# Disability/Unemployment/Financial Difficulties Support Group



## nogutsnoglory

This support group is for those who are out on temporary or permanent disability or whom are unemployed. We can offer one another support and guidance on the issues we face.


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## nogutsnoglory

Is anyone familiar with the unemployment pay system in the U.S. 

Do I file in person or online? How long does it take to get approved? 

I also need to apply for COBRA. I believe my former job is mandated by law to send me the appropriate paperwork?


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## Jennifer

Husband says you can apply for unemployment online and that its faster that way.

I receive SSI for Crohn's and don't work. If anyone needs help with applying for SSI I can help answer questions.


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## ryansbronco

nogutsnoglory said:


> Is anyone familiar with the unemployment pay system in the U.S.
> 
> Do I file in person or online? How long does it take to get approved?
> 
> I also need to apply for COBRA. I believe my former job is mandated by law to send me the appropriate paperwork?


yes on the system for almost two years

online is the best way. It takes about two weeks. Once you file you have a wait week. Then the next is cash. Also apply for food stamps. I got almost 200 a month. Check with your hospital theyll get you on cobra


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## nogutsnoglory

Ill definitely apply online than. I didn't think of food stamps, good idea. 

It's very frustrating being unemployed but also not being fully healthy and up to go on interviews and be proactive in the job search.


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## ryansbronco

long long shot but some states have a medical plan


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## Jennifer

So do some counties Ryan.  You can google search health care for low income in your city and state.


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## DougUte

Hi guys. I work in the Unemployment Insurance program here in Utah. I am in the side that collects the funds from the employers, but I have some knowledge. In Utah applicants are required to apply online. If somebody comes into an office to apply they are sat at a computer to file online. 

You will have a waiting week, then will start getting benefits. Here the applicants get a card and the benefits are posted on that card every two Weeks.

In Utah the claimant is required to search for a job, but it is only 2 or 3 job applications a week they have to report. The job search can be problematic for us Crohnies.


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## Jennifer

Don't newspapers count though? I remember my dad only looking for jobs in newspapers when he was on unemployment and he never applied anywhere because there was nothing in his field.


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## nogutsnoglory

My concern is I think I need to show up weekly at an office to prove I have been looking for a job. I know my parents said that's how it used to be but maybe it changed.


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## DougUte

nogutsnoglory said:


> My concern is I think I need to show up weekly at an office to prove I have been looking for a job. I know my parents said that's how it used to be but maybe it changed.


That has probably changed. Most likely that is handled online now. I can't guarantee it, but the trend is to move away from people physically coming in. everything is done online.


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## ryansbronco

In my old  state (ive moved since unemployment)  online is fine. You'll need to keep a log of how where when you looked for work. The state will call you in for an audit.  So when you look for work online use the email as the person you contacted. Otherwise phone or on site grab the persons name. 
We have a program that you will do online that puts your resume on the sate employment web site.  Every now and then they will send you a job match. You don't have to apply, but you should. Those job report back to the state. In theory if you don't apply for the jobs they sent you could loose your funding.


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## Dragonfly72

Hi there, I hope you guys don't mind me asking a question.... How long have you not been able to work?  I have been out of work now since my hospitalization for 2.5mos and may have to be out the rest of June.  I have just completed my 3rd remicade infusion but had a lot of pain/pressure 1 week prior to it and my GI is afraid it wore off and I didn't make it the 6 weeks, so we are going to see how I will do throughout the next 8weeks... Watch and wait!  Anyway, I was wondering is it normal to have to be out this long or longer?   My energy levels zapped by the afternoon and i am still trying to get my bowels regulated and put on weight.  I am a nurse who works 10 -12 hour shifts.   I am currently collecting short term disability but, I just worry about my employer getting to the point of enough is enough.... Does this make any sense?   Thank you,  I hope I posted in the right area.  Thank you, Michele

Meds:
Remicade 
6-MP
Hycosamine
Prozac
Vit-12
Calcium with D
Zofran
Birth control
Klonopin
Tylenol
Colace
Mirilax


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## DougUte

The longest I have been put was for my surgery.It was 6 Weeks. I was officially on FNMA leave and was paid through my accumulated sick leave. 

If you are on FMLA they need to hold a position for your return. It doesn't have to be the same job you left, but it has to pay you the same wages.


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## Ya noy

nogutsnoglory said:


> My concern is I think I need to show up weekly at an office to prove I have been looking for a job. I know my parents said that's how it used to be but maybe it changed.


If you still live in New York, I'm fairly certain that has changed and you shouldn't have to physically go to the unemployment office, and should be able to take cre of everything on-line.  Yes, technically you have to be looking for a job, usually unemployment requires you apply for at least 2 jobs a week, but applying for jobs on-line counts -- just make sure you keep a record of the jobs you apply for, just in case you are ever required to produce proof of your job search, but they rarely check up, and no, I doubt that you will have to actually ever provide proof of your job search.


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## nogutsnoglory

I can apply but I'm not healthy so part of me hopes I don't get called for interviews till I'm fully ready.


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## ryansbronco

My old roomate was on the system for almost two years. Just set your job profile super high like only want $12 an hour or higher, no travel, must have medical, only put in a few skills and the minimuim info they require


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## Paddy Holmes

I've been away from the forum for a while, I've been having an attack of the blues and lost all interest in communicating. Having come across this thread I notice that there are no posts from the UK. I've tried to get some sort of benefit as I'm seriously barely able to leave the house , quite apart from doing a job. Agrophobia brought about by my ileostomy which is VERY active. I've got short bowel syndrome as they've had to remove such a lot of bowel...so how does anyone think I am in the benefit stakes? 
I feel I should qualify for disability as I cannot function out of my home. The present UK government has made it almost impossible to qualify for that beneit. Does anyone have any advice for me?:ybatty:


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## nogutsnoglory

While filing my application for unemployment I noticed a section that said are you disabled? It was mandatory to fill out but the options were yes, no or decline to comment. 

I read the criteria and disability refers to not just physical handicaps but diseases like Crohn's. I felt unsure how to answer the question not knowing if it could help or hurt me so I declined to comment. I'm not sure if that is seen as a red flag.


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## Jennifer

Paddy Holmes said:


> I've been away from the forum for a while, I've been having an attack of the blues and lost all interest in communicating. Having come across this thread I notice that there are no posts from the UK. I've tried to get some sort of benefit as I'm seriously barely able to leave the house , quite apart from doing a job. Agrophobia brought about by my ileostomy which is VERY active. I've got short bowel syndrome as they've had to remove such a lot of bowel...so how does anyone think I am in the benefit stakes?
> I feel I should qualify for disability as I cannot function out of my home. The present UK government has made it almost impossible to qualify for that beneit. Does anyone have any advice for me?:ybatty:


I see no harm in trying Paddy Holmes. Have you read through this? http://www.crohnsandcolitis.org.uk/downloads/disability/AdultGuide.pdf It walks you through how to apply and explains how you're eligible.


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## Kit

Hi all, I am sorry to hear that so many of you can't work!  I actually decided to quick my job of 15 years.  I went down to part time after being diagnosed, and was only working 20 hrs a week.  I sympathize with Dragonfly on not being able to work for long hours of time. I too was in the health care field (Physical Therapist Assistant).  It became too mentally and physically challenging for me and I couldn't do much else than work.  @Dragonfly, i had a surgery in Feb 2012 and was off work 8 weeks after surgery and then went back with very limited hours, 9 hrs working up to 20 hrs in a 6 week period of time. I had disability time built up so I only had to not be paid for a couple weeks.  FMLA is 12 weeks, but that only guarantees a job, not payment for the time off.  You also cannot have taken any large amount of time off that year, or it counts as part of the 12 weeks.   I am  actually doing well intestinal symptom wise and all blood work looks good, but energy levels vary and I need a lot of breaks. I am blessed that I have a husband who can support us for a while.  My physician didn't even say anything about disability, so I am thinking he thinks my symptoms don't warrant it.   Ok sorry the rambling and I hope this has some helpful info.


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## xxjemmamxx

Just thought I would post on here as I am going to be leaving my part time job soon. I have been really struggling with it for months and it is making me unhappy. Fortunately now I am in a position where I can afford to not work and we can sufficiently survive on my husbands income. I'm looking at this as a positive thing for a number of reasons; I'm not in a job I can see myself doing for the rest of my life anyway, I can concentrate on finishing my degree, I can have the time and flexibility to travel, rest, volunteer and study from home and I have an opportunity to really get my disease under control before I venture back out into the world of work. Plus my job is just not suitable for a Crohnie at all and my employers have really harsh sickness policies meaning that I have to go through disciplinary processes for having 3 or more absences in a 12 month period and at the minute I am at 2 in the space of 6 months...(one for surgery one for coming down with a bad cold that I still can't get rid of)

My job is very physical and I really struggle with fatigue and some symptoms even though I'm in remission. I am incredibly nervous about handing in my notice though - I keep putting it off! I'm really scared about leaving employment as I've always worked.


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## Kit

@jemmam---Thanks for sharing your story!  It sounds a lot like mine, except for going back to school and you look younger!  I am 48 and have not worked for almost 2 months now.  It is so nice to be able to rest when you need to and do things in life again.  I would consider myself in remission as well, but fatigue still seems to be a problem, though it has improved since surgery.  
I hope all goes well with handing in your notice.  I had the support of my employer, family and friends which helped.  I am just trying to get a healthy routine and balance rest with doing things.  Not so good at it yet!

Good luck to you Jenmam and keep us informed on how things go!

Kit


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## xxjemmamxx

Thanks for that lovely reply Kit  It is so good to actually hear from someone who has been there and done that.

I have the full support of my husband and most of my family (not including the ones that think Crohn's is a walk in the park or a different kind of IBS) which really helps. Fatigue is my biggest enemy right now! It's only been 6/7 months since my surgery after a bad flare so I'm still trying to get everything under control and figure out where I stand at the moment. Bloods show vitamin deficiencies so I'm working on those and hopefully when I have a scope and CT scan later this year things will become more clear. I'm not sure I will have the support of my employer as I don't believe they take me very seriously and I will be leaving them in a very difficult situation by leaving (short staffed etc). 

When you left your workplace did you explain to them why you were choosing to leave? I'm expecting them to ask me why I'm leaving/what I'm doing next and I'm not really sure how to answer that. They know I'm struggling as I've told them many times and even got my IBD nurse to write to them but I don't think they realize how unhappy I am.


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## Kit

@jemmam----Well I had an advantage that I worked for a hospital system and I have worked with my manager 15 years.  All that said, she knew exactly what I was going through and was watching my performance which was getting worse.  I couldn't keep up the pace,  and my mind didn't work as fast as it needed too for being a Physical Therapist Assistant.

As for what I told people, my closer friends I told them the job had become too mentally and physically challenging for me.  My manager knew everything, but we chose to tell people I was retiring from the hospital system.   On my resignation letter I put that I needed to take care of myself for a while and the job had finally taken a toll on me mentally and physically.  I might have shared too much,  but I am a pretty honest person.  

I did have people tell me I need to take care of myself and no one else will.  Employers think about the business and need to make decisions accordingly.  They can have compassion to a degree, but the bottom line is that they need follow what upper management has outlined for the business.  Also you will just find people who aren't supportive.

Unfortunately Crohn's is very hard to explain to someone that doesn't understand sicknesses in general.  Here is something my sister found for me.  It isn't about Crohn's but another auto-immune disease lupus.  It made soo much sense to me.  http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

I hope this helps and feel free to ask me questions or private message me if you want.  I would love to support you through this.


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## xxjemmamxx

Hi Kit,

Thought I would let you know that I handed in my notice today! I just explained that I thought it was the best thing for me and although my manager was upset that I'm leaving she understands. I'm going to be helping my husband with his business as well so I also said that I wanted to work from home which is ideal for me. She actually said that I had done so well this past year considering how difficult it has been for me. I honestly feel like the weight of the world has lifted off my shoulders 

You have it spot on about business and the extent of their understanding. This is something we have to face wherever we work unfortunately.

I have read the spoon theory before, I love it! It explains everything so much better than I ever could myself.

I have 4 weeks left to go at my job now!


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## twokatmew

I had to stop working in 2004 after a 20+ year career in IT.  I was diagnosed with Crohn's is 1975 at 13, and I always have to be on at least 5mg prednisone to keep Crohn's relatively well controlled. It was getting more and more difficult to work, and when I finally had surgeries in 2004 & 2005, that was it for my career.  I was devastated at first, but once I started to reap the benefits of not practically killing myself by working and not having the energy to take the best care of myself, I began feeling much better about not working.

Anyway, just thought I'd say "hi" and offer any advice to those applying for SSDI.  Because I had to go to court to get approved, I get reviewed every three years.  I'm due for another review this year.  Every review is a bit nerve wracking, but my docs support my disability status, and deep down I know I wouldn't be here if I hadn't finally given up working.


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## xxjemmamxx

Sorry to hear that Crohn's put an end to your career in IT but it does sound like it was the best choice for you and your health is so much more important.

I'm sure there are some people on here who could benefit from some advice about SSDI and best of luck with your next review.


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## twokatmew

Thank you!  :smile:

 4 Beta


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## Kit

@twokatmew   Thanks so much for sharing your story!    I am glad you were able to take the steps to be able to take care of yourself.  Those are hard decisions to make when you think you should be working.  Thanks for the encouragement for the forum.  Unfortunately I don't think disability is an option for me due to the fact I really am in remission, I just have fatigue issues still and was stuggling with work and life.  
@jemam  I hope things are going well for you and you can make it through the next 4 weeks.


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## nogutsnoglory

What do you guys think are the easiest or best jobs (positions or fields) for someone with IBD to look for when applying? 

I am thinking in terms of jobs requiring little energy, flexibility in working from home etc?


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## xxjemmamxx

A lot of jobs working from home would be great for Crohn's. I don't have experience of working within an office, but I think that could work for some people with Crohn's too. In my opinion, the best job for people with Crohn's is anywhere where the employers are understanding and respectful.


Ughh...I can tell some people in my family don't respect my decision to leave my job. They don't understand what it's like to have Crohn's and their ignorant comments are hurtful. Really have to restrain myself sometimes to stop myself from saying something back. I get that some people are ignorant about IBD but it hurts that my family are when they should be supportive. They saw me when I was really ill in hospital so they should know better. I am 100% certain that leaving work is the best for me, even though I'm reluctant to do it, and they just keep making me feel bad for doing it. Like I'm lazy when actually I put so much effort into being able to even work a single shift that I'm exhausted to the point that I can't do it any more. Sorry for the long post, but I'm feeling a bit low at the minute and writing it down helps.


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## nogutsnoglory

Jemma don't get down, I'm sure it's frustrating when people don't understand. My family sees firsthand how bad things are so they fully understand it but I think my friends and even less immediate family don't get it and possibly think I'm just a whiner. Nobody ever said that but I get the sense some can't believe one can be so ill so long and that I must be making it up. At the end of the day you know your truth and you need to get yourself better and sometimes that means leaving work.


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## Kit

@Jemam  I am soo sorrry that you are feeling down and you aren't getting the support you need from your family.  Big hug to you!  My husband always tell me you need to listen to your body and figure out how to adjust what you do as needed.  For us that means constantly reevaluating what we need to be doing for ourselves to keep healthy.   Unfortunately people don't realize when we push too much it throws us in a flare and then more chance of being in the hospital.  I have confidence that you will find a career that will be more compatible with the Crohn's and maybe even let you work part time.  I am glad you feel like you can vent here!
:hug:


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## Donk4263

twokatmew said:


> I had to stop working in 2004 after a 20+ year career in IT.  I was diagnosed with Crohn's is 1975 at 13, and I always have to be on at least 5mg prednisone to keep Crohn's relatively well controlled. It was getting more and more difficult to work, and when I finally had surgeries in 2004 & 2005, that was it for my career.  I was devastated at first, but once I started to reap the benefits of not practically killing myself by working and not having the energy to take the best care of myself, I began feeling much better about not working.
> 
> Anyway, just thought I'd say "hi" and offer any advice to those applying for SSDI.  Because I had to go to court to get approved, I get reviewed every three years.  I'm due for another review this year.  Every review is a bit nerve wracking, but my docs support my disability status, and deep down I know I wouldn't be here if I hadn't finally given up working.


I saw your post and was wondering if you had a LTD policy at your job?


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## twokatmew

Donk4263 said:


> I saw your post and was wondering if you had a LTD policy at your job?


Yes,  thank goodness. It pays a small portion of my prior salary in addition to what social security pays. The total is nowhere near what I earned while working, but my needs & wants are modest. 

 4 Beta


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## Donk4263

Good for you!

I'm kinda in the same boat but I don't think I am ready to file yet.


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## twokatmew

Donk4263 said:


> Good for you!
> 
> I'm kinda in the same boat but I don't think I am ready to file yet.


I didn't want to, but complications and sepsis from a botched resection made the decision for me. I was so sick in hospital for so long that my friends got the forms and helped me fill them out. I was still there when SS called for my phone interview. I remember being flat on my back with two pumps and multi-lumen PIC *and* central lines.

I'm sure I never would have made the decision to apply had I not been so ill and not really expected to survive. Looking back, I know I should have applied long before I did. I just never dreamed I'd become so ill. It's a very tough decision to make. Best of luck in whatever you decide!

 4 Beta


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## Donk4263

Wow, my heart goes out to you for being so strong. It's story's like this that make me realize just how serious this disease really is!!!

Thank you so much for sharing!!!


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## bumdeal87

I was very interested to come across this thread as I have just applied for disability.  I am just at the beginning of the application process but for me everything so far has been online. I am coming off a 5 year remission and have been really sick the past 4 mo.  It was at the suggestion of my doc that I decided to apply...would never have thought of it on my own since I just figured this was my life.  I felt almost guilty applying...but since I can not leave my house I figured it was worth a shot. No reason not to hope for the best!


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## Jennifer

Be sure to appeal bumdeal87 if you're denied. Most people are denied their first time applying. Always appeal.


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## twokatmew

Jennifer said:


> Be sure to appeal bumdeal87 if you're denied. Most people are denied their first time applying. Always appeal.


Yes, definitely appeal, and if that's denied, get an attorney and go before a judge. It took three years before I finally got it, but it was retroactive once the judge ruled in my favor. He said I never should have been denied in the first place. 

 4 Beta


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## twokatmew

Donk4263 said:


> Wow, my heart goes out to you for being so strong. It's story's like this that make me realize just how serious this disease really is!!!
> 
> Thank you so much for sharing!!!


Yes, if I've been doing fairly well for even a short while I start to forget just how serious Crohn's can be. Unfortunately I usually get a strong reminder from these guts of mine. ;-)

I'm glad I found this forum. It's important and comforting to have support from others who really understand! 

 4 Beta


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## twokatmew

bumdeal87 said:


> ...  It was at the suggestion of my doc that I decided to apply...would never have thought of it on my own since I just figured this was my life.  I felt almost guilty applying...but since I can not leave my house I figured it was worth a shot. No reason not to hope for the best!


I think many of us have to be prodded by others to apply. My rule for myself was "if I can drag myself out of bed, I am fit for work." As my health tanked, my worst fear was that I'd end up unable to work and on disability. Having to fight for it when I was terribly ill (and housebound) while feeling guilty about not being able to work was horrible. It took years to overcome my guilt over being unable to work. Even now I sometimes miss my former career, but honestly, ending up on disability probably saved my life. And sick or not, I'm glad to be alive. 

Docs don't suggest patients apply for disability without good reason, and without the stress and strain on your body from pushing yourself so hard to work, you just may regain some health. 

Best of luck to you!

 4 Beta


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## Kit

@bumdeal87  Support and hugs go to you during this process.  I agree with twokatmew "without the stress and strain on your body from pushing yourself so hard to work, you just may regain some health"  

@Twokatmew  I felt guilty about not working too, but I didn't have much of a life outside work and was stressed all the time.  Unfortunately I don't feel like i can apply for disability since my Crohn's symptoms and bloodwork seem to show I am in remission.  I just don't have the energy anymore to continue with the career I was in.  

Thanks for listening.  sigh.

Kit


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## nogutsnoglory

It's so unfair that the process is so brutal and long and 80% are denied at first. I found through experience with insurance and other areas persistence is key. You need to be a bug up their behind and let them know you aren't going away till you have justice


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## Donk4263

My rule for myself was "if I can drag myself out of bed, I am fit for work." As my health tanked, my worst fear was that I'd end up unable to work and on disability. 


This sounds so familiar...I too use the same rule. 

My biggest fear is the inevitable fight with SSDI and my employer. Plus I fear not being able to pay for my infusions.

Just seems to be a lot of worry all of the time.


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## nogutsnoglory

I wonder if Obamacare will make it easier to apply for disability.


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## Donk4263

nogutsnoglory said:


> I wonder if Obamacare will make it easier to apply for disability.


That's very good question???

Or will I be penalized for not having health care coverage if I am out of work!


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## bumdeal87

Donk4263 said:


> That's very good question???
> 
> Or will I be penalized for not having health care coverage if I am out of work!


Those are both very good questions!!


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## bumdeal87

twokatmew said:


> I think many of us have to be prodded by others to apply. My rule for myself was "if I can drag myself out of bed, I am fit for work." As my health tanked, my worst fear was that I'd end up unable to work and on disability. Having to fight for it when I was terribly ill (and housebound) while feeling guilty about not being able to work was horrible. It took years to overcome my guilt over being unable to work. Even now I sometimes miss my former career, but honestly, ending up on disability probably saved my life. And sick or not, I'm glad to be alive.
> 
> Docs don't suggest patients apply for disability without good reason, and without the stress and strain on your body from pushing yourself so hard to work, you just may regain some health.
> 
> Best of luck to you!
> 
> 4 Beta


Thanks for the encouragement!
I feel the same way...so very guilty and non productive!
My husband doesn't want me to work either but I see the stress he's under so it's a vicious cycle.
I haven't heard anything back but I picked up my own medical records to drop off at the SS office. Maybe that will speed the process along?

I agree with the whole doc suggestion.  Just still hard to sit back.

Thanks for your input makes me feel better and I do need the rest at this time!

Hugs to you and I hope you have a great day!


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## bumdeal87

Kit said:


> @bumdeal87  Support and hugs go to you during this process.  I agree with twokatmew "without the stress and strain on your body from pushing yourself so hard to work, you just may regain some health"
> 
> @Twokatmew  I felt guilty about not working too, but I didn't have much of a life outside work and was stressed all the time.  Unfortunately I don't feel like i can apply for disability since my Crohn's symptoms and bloodwork seem to show I am in remission.  I just don't have the energy anymore to continue with the career I was in.
> 
> Thanks for listening.  sigh.
> 
> Kit


Sorry Kit, I loved my career also and just couldn't keep up with the stress and demand. Applied for less stressful jobs and I am over qualified.  I wonder if SSI will take that into consideration??
I hear you on the exhaustion.  Can hardly drag myself out of bed to feed the kids let alone make it to a job.  Anyway...thinking of you and I hope you find a solution soon!


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## Kit

Thanks for the encouraging words!  I am feeling better not working, but still feel a little disorganized.  At least now i feel like I have some time to try to take care of myself.  I am hoping at some time to feel like I can think of different career choices.  thanks for this feed!


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## Donk4263

I have a question about ADA and my employer. Do I need to officially declare my Crohn's diagnosis with my employer in order to be protected under ADA or am I protected simply because I have been diagnosed?


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## nogutsnoglory

You only need to declare it if you seek accommodations. 

"Do I have to declare my disability?
No, the ADA says you aren’t required to declare your disability. This applies to people with noticeable disabilities as well, such as those who are blind or use wheelchairs. However, until you disclose your disability to the appropriate person, such as a supervisor, your company is under no obligation to provide you with accommodations."

http://www.resumeadvantagepro.com/2011/07/13/declaring-a-disability-to-an-employer/


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## DLTooley

'ObamaCare' rolls out in full at first of the year, 2014.  

I'm on an early expansion of it in Colorado after being on an indigent care State program here, a better State program in Washington, self-employed insurance through Blue Cross, and, first, a superb Teamster Union based plan.

I lost my house in 2010 in Washington State - in part due the financial crisis, in part due non-IBD health reasons (maybe not entirely unrelated!) and I've been doing a lot of hiking and camping since - in drier climes than Washington State.

Stress issues have unfortunately pursued me here, but I'm still much happier being a 50 year old version of the stereotypical outdoor 'ski bum' type than I was before.  If you live a simple life, food stamps combined with a food bank and an occasional soup kitchen can go a long ways - I've been living on a very small disability payment and slowly selling off my old possessions via ebay and craigslist.

The relation between stress and IBD is a big concern of mine as it applies to social security as my stress is definitely workplace related.


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## nogutsnoglory

Does anyone know how much disability pays on average? I don't know if its a federal or state thing. Also I think you need to have worked 10 years to be eligible. I don't have that much time under my belt because I'm younger and went to school. I did hear about another disability plan SSDI? I don't know if I want to go this route because I'm praying in time ill be ok to return to work and I know the process is insane. I feel like applying is saying I'm not going to get better and I'm basically giving up.


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## Donk4263

nogutsnoglory said:


> Does anyone know how much disability pays on average? I don't know if its a federal or state thing. Also I think you need to have worked 10 years to be eligible. I don't have that much time under my belt because I'm younger and went to school. I did hear about another disability plan SSDI? I don't know if I want to go this route because I'm praying in time ill be ok to return to work and I know the process is insane. I feel like applying is saying I'm not going to get better and I'm basically giving up.


It's very difficult to pin down an average because it's based on your past work history. You could go to SS website and login to find out your exact history and I believe it will inform you on your eligibility.


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## Kit

@nogutsnoglory  I agree with Donk on it depends on how long you have worked and what you made for social security disability.  I get a statement normally once a year that will state the social security benefits and disability benefits.  

Here is a website I found that defines the two types of Disability.
http://ssa-custhelp.ssa.gov/app/ans...social-security-disability-and-ssi-disability

Check the links underlined in descriptions for more detail.  

I hope this helps.

Enjoy the Day!


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## bumdeal87

Hey All!  Like several of you mentioned I was denied.  It seems like even though we lost my full income my husband makes to much for me to qualify. Not sure if it would pay to seek the help of a lawyer at this point. Still can't pay the bills but they didn't really care about that to much.  I am not surprised after reading what others went through...not sure what to do now.


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## Kit

@bumdeal---If you are applying for one type of disability his income factors in, but social security disability doesn't.  You have to have worked and paid into Social Security (not sure how many years) and be disabled.   This is what I briefly understood from the SS website.  

Here is the link:
http://ssa-custhelp.ssa.gov/app/ans...social-security-disability-and-ssi-disability

I hope this helps you some.  

Kit


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## twokatmew

Correct, social security disability is not dependent on income, but you must have worked long enough (and earned enough) to qualify. I don't know how many "work credits" are required, because it wasn't an issue for me, as I'd worked full time for 25 years. SSI is dependent on income, but that's a whole different animal. 

 HD


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## xxjemmamxx

Sorry, I can't give any advice about disability as I know it works a lot differently in the UK as it does in the US.

I just wanted to post that it is my last day at work tomorrow. I have been counting down the four weeks notice as it's been very tough at times. Had 2 or 3 really bad shifts where I just wanted to give up and walk out or cry, but I didn't . A bit apprehensive about not doing anything and where I'm going from here, but I'm just relieved that I won't have to struggle in that job anymore. Thanks for all your help when I posted on here before.


----------



## Donk4263

xxjemmamxx said:


> Sorry, I can't give any advice about disability as I know it works a lot differently in the UK as it does in the US.
> 
> I just wanted to post that it is my last day at work tomorrow. I have been counting down the four weeks notice as it's been very tough at times. Had 2 or 3 really bad shifts where I just wanted to give up and walk out or cry, but I didn't . A bit apprehensive about not doing anything and where I'm going from here, but I'm just relieved that I won't have to struggle in that job anymore. Thanks for all your help when I posted on here before.


I wish good luck and improved health.


----------



## Kit

:hug:  Thanks for the update Jemmam! I wish you much health in your next adventure.  Take care of yourself!  Keep me posted on how you are doing.  

Kit


----------



## nogutsnoglory

Xxjemma happy you can relax and focus on your health.


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## Morrish

*Help*

:rof:I sent in an online application for SSDI and not even 24 hours was up and I got a phone call denying me because I have not worked and paid social security for the last 5 out of 10 years. I put in 24 years at a school district that didn't pay SS. So I'm thinking do I get a lawyer, didn't understand why they wouldn't let me use my husbands, but not until he files, and he's younger than me, I'm 57 and I use the bathroom constantly and have back and neck problems from a wreck a year ago and I'm very depressed. Have a scheduled colonoscopy tomorrow.
Any ideas out there as far as SSDI ?


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## Morrish

Apparently I don't know how to post, I was hoping that everyone would see this on page 1


----------



## nogutsnoglory

Morrish you posted fine. Posts show up in the order in which they are posted, so your new post is going to be last but people will see it. I don't know the answer to your question I'm sorry but hopefully someone knows more on SSDI.


----------



## Jennifer

Hi Morrish I don't know much about SSDI so if it were me I'd want to talk to a lawyer to see what your options are and they should be able to make the process go by faster. I receive SSI and about a year back or so I got a letter in the mail from Social Security that informed all people who receive SSI that if they are still getting it after the age of 55 then they will have to start paying back money they received. I can't find the exact information on the Social Security site and no longer have the letter but it may be a good idea to speak with a lawyer before trying to apply for SSI if you can't get SSDI. This member hasn't been active in a while but I'm going to try tagging scifi-enthusiast anyway. They applied for and eventually received both SSI and SSDI. 

Here's quick info on both SSDI and SSI: http://www.crohnsforum.com/wiki/Social-Security-Disability-Benefits


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## Kit

I am sorry, I don't have any information on SSDI as well.  I would find a lawyer or Social Security person who has information on what are your options.


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## Tiger09

I'm getting reviewed again because I work part time and changed jobs.  My lawyer said to fill out paperwork honestly and if anything goes wrong I can appeal.  I mean, I'm about to go on tysabri and I have a med port in my right ventricle of my heart.  Losing this would be a death sentence for me.  Has anyone ever dealt with this?


----------



## Jennifer

Tiger09, if its for Social Security then talk about your worst days possible only. I'm surprised your lawyer isn't filling it out. Mine filled out all of my paperwork. 

I receive SSI and go up for review from time to time. Its usually a phone call with them asking if I've been hospitalized in the past year for at least 30 days or more. They never ask about my medications or my health in general. All that ammo is used during the appeal. I've only lost SSI once due to working part time but I got a lawyer and he took care of everything. It took about 3 months to get it back but I got it back on the first try.


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## Tiger09

Yeah they want my work history and how I take breaks and what kind of work I do.  I had to take a job as a bartender/server and it sucks.  I'm trying to get an office job, but its hard.


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## LodgeLady

Subscribing to this thread! I may be entering this unemployment territory, just don't know how bad this Crohn's is going to end up being. Trying to get all the info I can. Thanks all!


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## lblair

Good luck I applied a month ago still waiting to hear didn't get a denial letter yet so they are looking into it!!! Usally in MN if you get denied you get a letter within 2 weeks.


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## PDXDave

I applied for disability and got approved after about 7 months. Luckily I had 401k to lean on during the arduous process.

Crohns or colitis does not automatically qualify you for disability. 

Some folks make the mistake of doing little else in their application than proving they have IBD, and get denied. When answering the questions on the forms, it is important to go into detail about how it affects you and your ability to work.

Lots of people have IBD and are able to hold a job just fine. You must describe and demonstrate that not only do you HAVE IBD, but that the condition prevents you from working, or gets you fired for absenteeism or drug side effects, or any of the 1000 ways IBD can wreck our ability to work.


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## nogutsnoglory

Glad it worked for you PDXDave, I know many are struggling to qualify for disability, not just for IBD but a range of debilitating conditions. It's probably best to err on the side of including as much information and proof as possible and be ready to appeal and fight for your case.


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## nogutsnoglory

Does anyone know what happens when you are on unemployment but file your weekly claim and answer "no" to the questions were you ready, able and willing to work this week? I wonder if my claim won't go through or someone will call me. I have no clue what happens but I wanted to be honest.


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## PDXDave

The people in both agencies seem to realize that there is a built-in catch-22 in the unemployment/disability process that "forces" people to either become homeless or provide "flexible" interpretations to certain questions.

If states went back and audited every person who was approved for disability and prosecuted them for fraud because they claimed they were able to work, the whole process would become a train wreck. We don't see them doing this for the most part. In certain cases, they may do it because there are other red flags that make them think fraud is happening, but in the vast majority of cases, they understand the harsh reality of this catch-22, and they look the other way.

It is also important to know this: During the disability process, you do not legally KNOW FOR A FACT that you are disabled. You aren't disabled until they SAY you are disabled. So when you report to unemployment that you are able to work, you are accepting that your legal "default" status - until deemed otherwise - is "able to work" for the purposes of unemployment insurance. Not until you are officially found to be disabled are you officially unable to work. 

Until then, you will gladly accept a job even though you are almost certain to be fired immediately when they learn you have serious limitations due to your disability.

It is a gray area of opinion versus legal status. You may be of the OPINION you are disabled, but your LEGAL status, until proven otherwise, is that you are able to work.

So you are being honest within the framework of the convoluted legalese that the various bureaucracies have created.

I'm not a lawyer, so don't make any decisions based on what I say..... I'm just giving you my layman's interpretation of a very conflicted system.


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## taylorali

Hi All,

I am hoping someone can help me out here. I'm 28 years old. I have severe Crohn's Disease. I've had two bowel resections already and I was diagnosed in 2010. I worked for a company for 2 years, but was let go after having to go on disability due to a massive flare I had back August '12. I couldn't return to work until November. In December, I was let go from the job and applied for unemployment insurance, as I know getting SSI is very difficult. In January I went back on short term disability through unemployment because of my second bowel resection. In May of this year, I began to get extremely sick - I lost 30 lbs. I had almost every test done in the book to find out what was wrong with me. Finally, after ruling everything else out - I had to have my gallbladder removed on September the 6th. I am back on disability through unemployment. I report every week that I have been unable to work for 4 or more days. (My 26 weeks of unemployment are up though because I was unable to report to my local office for Emergency Unemployment because the day I had to go was the day of my surgery.)

Even when I was working - I had to take so many sick days. So many managers would tell me that I needed to be there, etc. But what can you do when you have a fever, your vomitting, going to the bathroom every 5 minutes, feel like your stomach is going to rip apart, and every joint you have is enflamed? It's so difficult. (Which I'm sure you all know)

I have a Crohn's Advocate who has told me that I need to look into SSI - as I also suffer from Migraines that 3% of the country suffer from. (Lucky me.) I have 3 herniated discs in my lower back. My arthritis - which is said to be assosciated with my Crohn's - never feels better. I am also severely anemic and have to begin getting iron infusions weekly (ordered by my GI when I was in the hospital. I was .3 away from needing a blood transfusion.) 


1 Week following my surgery I began to have severe back pain on the left side of my body. I literally cannot stand up straight. I'm going to my surgeon on Tuesday, but it doesn't look good. :/

I also suffer from Panic Disorder, Depression, & Severe Anxiety. I take so much medicine, I could open a pharmacy. Yuck! 

What are the first steps you need to take in order to get SSI benefits? I've been told that because I have so many other health issues, I will most likely qualify, but who knows. Any help would be so much appreciated!

I'm a New Yorker too if that helps. I genuinely don't know what else to do because I cannot support myself in any way, shape, or form - and my parent's really can't either at this point. 

Thanks in advance!!


----------



## nogutsnoglory

Taylor so sorry for the hell you have been through and continue to suffer. Fellow New Yorker here suffering and can't work either. I'm on unemployment but am honest each week saying I was unable to work the 4 days. Are they deducting these from the overall time we are allotted unemployment? That seems unfair. I'm not sure how much we get anyway but think its 18 months. 

If you only worked two years, you are like me as we are both young and don't have the 10 years work experience to be eligible for SSI. I haven't explored it deeply since I pray I can get better eventually and resume a job. I think you need to look into SSDI. Someone else can correct me if I'm wrong but others here have a lot of experience with the hassle and rejections they faced. Good luck.


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## Jennifer

Switch those around nogutsnoglory and you've got it right. 

You do not have to work a certain amount of time to qualify for SSI. You do however for SSDI. http://www.ssa.gov/disability/

taylorali, if you're thinking about possibly applying for SSI, then just start the process now by applying because getting accepted can take a long time. Plus if you're denied your first time applying (which many people are mainly to weed out the people who don't really need it) then the appeal process also takes time (ALWAYS APPEAL). If you decide that you don't want it by the time you're accepted then you don't have to take it and no harm done.

You need a good doctor to back up your claims. You could have a lawyer in the beginning if you want or you can wait until you're denied then have them file the appeal (or solo it the whole time without a lawyer). When filling out any forms talk about your worst days possible. Here's information on how to apply: http://www.ssa.gov/ssi/text-apply-ussi.htm

This is the Americans with Disabilities Act (ADA) as of 2008 http://www.crohnsforum.com/wiki/Disability-and-Crohns-USA

We all qualify under 2A and 2B for Major Life Activities.


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## nogutsnoglory

Oops thanks for the correction. This is an intimidating area that I hope I won't have to pursue. Disability and unemployment claims have been stressful enough when you are sick as a dog.


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## Jennifer

nogutsnoglory said:


> Oops thanks for the correction. This is an intimidating area that I hope I won't have to pursue. Disability and unemployment claims have been stressful enough when you are sick as a dog.


That's why I prefer a lawyer to handle my SSI case.


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## Donk4263

What about someone who is working now but feels that they are wearing down as a result of the many illness surrounding Crohns? 

Any advice?


----------



## Donk4263

Donk4263 said:


> What about someone who is working now but feels that they are wearing down as a result of the many illness surrounding Crohns?
> 
> Any advice?


I guess what I am asking is do I need to get my GI doc on board with me wishes first or should I see a lawyer first.


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## twokatmew

Donk4263 said:


> I guess what I am asking is do I need to get my GI doc on board with me wishes first or should I see a lawyer first.


Doc first. Without a sympathetic doc on board, a lawyer can't be much help. 

 4


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## Jennifer

I'd talk to your doctor about it Donk4263. You can still be working and apply for SSI and/or SSDI as you do need money to pay for rent, bills, food, etc. Some lawyers work with their own doctors as well (mine does) and wont need your current doctors to say anything at all.


----------



## RosaleeMae

Thankyou for all the info on this subject. I want to file for disability because I had a diagnosis and others for other things, I cannot work a fulltime job, no way. I need to get help for this and going to apply. I apreciate your help.


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## LylahJean

Jennifer, I live in Oregon and am facing having surgery very soon. I am currently in the process of applying for SSI but don't have a hearing until sometime next year. I'm curious as to if I will be eligible for short term disability? Or even if such a thing exists, I don't know.


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## Jennifer

You can stop receiving SSI at anytime. They also have programs to help you get back to work or college. I don't know anything about disability benefits for now until you're accepted through Social Security but what you could do is go to your local Social Services (might be called Department of Human Services) office and see what programs they might have for low income individuals (such as Cash Aid, food stamps, programs to help with utilities etc). http://www.oregon.gov/DHS/assistance/Pages/index.aspx


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## Kit

Good Luck Rosalee and be persistent.  That is what I have learned from this forum!


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## Amy2

My mom had a job helping needy people get assistance and she would try again and again and finally, it would usually happen.  Then, when she became disabled, she made one attempt to get on disability and gave up.  Thankfully, her father had set up a small trust fund for her.


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## Donk4263

Jennifer said:


> I'd talk to your doctor about it Donk4263. You can still be working and apply for SSI and/or SSDI as you do need money to pay for rent, bills, food, etc. Some lawyers work with their own doctors as well (mine does) and wont need your current doctors to say anything at all.


I guess I will need to discuss with my doc during my next appt.

Thanks for your help.


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## Annieor24

*SSDI for me?*

Hi. I was diagnosed with Crohns in 1987 (but my mother swears I've had it since I was a kid -- probably right). I've had three major surgeries (first surgery bowel perforation while six months pregnant -- bag for six months thank God son was born perfect especially after anethesia and pain meds); two bowel resections.

I've been dealing with minor blockages due to major inflammation at resection sites.  Also anal stricture.  Last colonoscopy had to use pediatric scope and would not pass through.  Now due for another colonoscopy.  

I am on short term disability now but I am considering applying for SSDI.  51 now and fighting this disease for more than half my life is starting to take a toll on me physically and mentally.  

I am nervous to apply since my family has always told me to "buck up" and fight it.  They don't realize how exhausting this disease is and now that my parents are falling in health (since I am only daughter I take care of parents) I am exhausted not to mention joint pain.

Any thoughts would be greatly appreciated.  Or SSI.  I don't know which one is the correct one.  Thank you.


----------



## Amy2

I'm 51 too and it's no time to let family dictate our lives.  You are a grown up and you need to do what's right for you.  Don't let them make you feel bad about applying for SSDI.  

It's sexist to have only the daughter take care of the parents.  Your brother(s) should be helping as well, since many hands make work light.  Why is sexism any more acceptable than racism?  What if the black child was 'supposed' to take care of the parents?  Everyone would freak.  Females are people and should be treated equal to males.

:hug:


----------



## Annieor24

Thanks Amy. I agree but since my parents were there for me when I was sick I want to be there for them now. It is sexist but they are in their eighties and my mom was just diagnosed with cancer ( fast spreading) I want to be here.


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## Jennifer

Hi Annieor24 and welcome to the forum! 

It can take a while to get accepted for SSI or SSDI so the best thing to do now would be to just go ahead and apply and if you decide that you don't want it later on you can always change your mind. 

Here's the difference between the two (it is possible to get both): http://www.ssa.gov/disability/

Go in to your local Social Security office and start the process right away. A lawyer can help to speed up the process and they only get a percentage of your winnings (this includes back pay from when you first applied but I believe Social Security only gives a few months of back pay). If you're denied don't get discouraged. Most people are denied their first time applying so you MUST appeal. Good luck.


----------



## Kit

Annie wishing you strength to take care of yourself and your parents.  Good advise from Jennifer!


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## Annieor24

Thank you.  Quick question, can I apply on line?


----------



## Crohn's gal since 1989

Is anyone familiar with the Canadian disability tax credit?  I am going to ask my doctor to fill out the paper work.  Any info would be appreciated!


----------



## Jennifer

Annieor24 said:


> Thank you.  Quick question, can I apply on line?


No you cannot. You can start the process online though here: http://www.ssa.gov/pgm/ssi.htm#a0=0


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## Annieor24

Thank you.


----------



## Stardust_Fiddle

Hi, all. I was just approved for SSI due to Crohn's and am waiting for the final paperwork to go through. This is a major relief and I am so glad that I was approved! Because of the state I live in, I have to apply separately for Medicaid so that I will have insurance when I turn 26 and lose my dad's insurance next month. Has anyone else done this, and does it cover most doctor/hospital/prescription costs? Thanks!


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## lblair

Stardust that is wonderful news still waiting to get on mine I applied in July and live in MN!!! Good luck!!!!!!


----------



## Jennifer

Stardust_Fiddle said:


> Hi, all. I was just approved for SSI due to Crohn's and am waiting for the final paperwork to go through. This is a major relief and I am so glad that I was approved! Because of the state I live in, I have to apply separately for Medicaid so that I will have insurance when I turn 26 and lose my dad's insurance next month. Has anyone else done this, and does it cover most doctor/hospital/prescription costs? Thanks!


It can vary from state to state I think but here in California it pays 100% for everything minus having to pay $5 every time you go to the ER. 100% for doctor visits, medication, tests, hospital stays, physical therapy etc (for dental in CA it only covers extractions now).

My husband recently applied for it and he said that the questions were easy.


----------



## lblair

I heard from SS today they want me to see one of there Mental health Dr has anyone ever had go do this??????? I'm sort if nervous and stressed about it I hope I don't get a flare over this!!!!!!!!!!!


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## Mike58

This is my first time writing this group.  So glad I found this.
I just submitted my online SSDI application.today.  Now it's my turn to be nervous. 
I was diagnosed with Crohn's late last year and it's been a whirlwind ever since.  4 hospitalizations,  1 major surgery to remove 18 to 20 inches of small bowel, on Remicade, Imuran, Prenisone, diabetes meds and high blood pressure meds.  
Doc just started me on Welchol for the diarrhea. 
I haven't been able to work since July 9th of this year.  I've been on STD with my company but that is running out end of this month.   I have LTD but it has a preexisting clause in it.  I'm still going to apply with the LTD carrier just to cover my base.  Any suggestions on getting thru with this process would be greatly appreciated.


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## lblair

I applied I July 19 long process I was DX in March of this year and I agree what a mess!!!! It seems my body is going to hell diabetic so on Meds and now neuropathy and fibermyalgia ostopinea from to much sterods !!! High blood pressure!!!! Depression anxiety and borderline personianilty disorder!!

Someone will call you if you applied on line to go over some info but that took forever!!!!!

Good luck


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## Mike58

Thanks for your post.  It somehow doesn't seem fair that any of us has to not only fight our diseases but we also must fight for benefits that we helped pay for all of our working careers. 
Oh well, it should be worth it for all who have to go onto SSDI to continue the battle.


----------



## Jennifer

lblair said:


> I heard from SS today they want me to see one of there Mental health Dr has anyone ever had go do this??????? I'm sort if nervous and stressed about it I hope I don't get a flare over this!!!!!!!!!!!


Yes I have. Its normal procedure. :hug:



Mike58 said:


> This is my first time writing this group.  So glad I found this.
> I just submitted my online SSDI application.today.  Now it's my turn to be nervous.
> I was diagnosed with Crohn's late last year and it's been a whirlwind ever since.  4 hospitalizations,  1 major surgery to remove 18 to 20 inches of small bowel, on Remicade, Imuran, Prenisone, diabetes meds and high blood pressure meds.
> Doc just started me on Welchol for the diarrhea.
> I haven't been able to work since July 9th of this year.  I've been on STD with my company but that is running out end of this month.   I have LTD but it has a preexisting clause in it.  I'm still going to apply with the LTD carrier just to cover my base.  Any suggestions on getting thru with this process would be greatly appreciated.


Glad you submitted your application Mike58.  Basically now you play the waiting game. IF you are denied though do not discouraged, many people are denied their first time applying. You MUST APPEAL. Hope you get it and hope you don't have to wait too long. :hug: Welcome to the forum!


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## Emmy

Hi, I'd like to join this support group.
Just recently had to switch off job seekers allowance and go onto employment support allowance... was kind of depressing really... felt like admitting I was too weak to work in alot of jobs... which right now I am... a sedentary job I could do most likely, but I have no experience in being a receptionist or something like that, I'm used to rushing about kind of jobs, more active stuff...


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## Kit

Welcome Emmy! I hope this all works out for you.  I am sorry you feel like you can't work like you want to, but unfortunately that is the nature of this disease.  We have to learn how to change our lifestyle to work with our disease.  Good Luck to you!


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## exit4

Some good info that helped me in approval of SSD the first time I applied. 
1 - Locate the original and any subsequent copies of your policy. Maintaining good records of your contracts will be highly useful, should you need to go through an administrative appeal or litigation. Do not rely on your employer's HR department or insurance broker to have your contracts.
2 - Don't go it alone. Working with an experienced professional who understands the complexity of the policies could mean the difference between a properly prepared claim and one that gets tied up in insurance company doublespeak, or worse, gets denied. 
3 - Watch the relevant dates and deadlines carefully. If your policy requires a 60 day filing, make every effort to be several days or even weeks ahead of the curve. Filing even a day late could turn a solid claim into a denial.
4 - Your medical records are an important part of your claim presentation. You have a right to have a copy of all of your tests, records and reports and you need time to review them. If there are things you don't understand - ask your doctor. If you still don't understand, keep asking. If your doctor or the office doesn't cooperate, don't be intimidated - ask a trusted friend or professional to help. If there is information that does not seem right to you, insist on discussing it and when appropriate, request that corrections be made in the proper manner.
5 - Your doctor(s) are not insurance professionals and may not understand the nuances that dictate so much in determining claim decisions. *Your records must clearly indicate limitations and restrictions that relate specifically to your occupation and very clearly describe how these problems prevent you from performing the tasks necessary to do your job.*
6 - *Your medical records must also include documentation that could also serve as evidence of your inability to perform the necessary tasks associated with your job, whether it is physical labor or pure brainwork.* Insurers tend to intentionally fail to consider the cognitive requirements of work, so you must be vigilant to present those aspects of the job.
7 - Every time you have contact with the insurance company and/or its agents, be careful. Have a pad and pencil and take detailed and legible notes on who you spoke with, the date and the details of the conversation. If you are unable to do this, have a trusted friend or professional on the phone or in the room who can serve as a witness on your behalf. Tell the insurance company representative if another person is on the phone line with you, and make a note that this has been made clear to all parties. After each phone conversation, send a letter by registered mail that describes the conversation and all of the details. Request that the insurance company respond if there is any difference of opinion as to the conversation or the details.
8 - Protect your claim. No matter how sympathetic and friendly the insurance company representative may be, they are not your friends - and their job security, bonus or career advancement may depend on how many claim denials or delays they can rack up.
9 - Filing a disability insurance claim immediately opens the possibility of surveillance and investigation. If your claim involves being unable to travel to get to work, you may be videotaped if an investigator sees you driving or travelling. If you call the insurance company from a phone not located in your home, Caller ID records can be used to prove that you are able to travel. Think like an adversary. BE CYNICAL.
10 - Keep your claim, your disability and the claims process private. Today's insurance company watches public posts, forums, bulletin boards, chat rooms, social networking sites, and any online source where information could be gathered. 
11 - The claims process is a minefield. Filling out forms is equivalent to an attorney preparing for trial - every piece of information is a chance to build or destroy your claim. Be 100% honest, but do not leave yourself exposed to evidence contrary to what you have stated. If you have days where you are fine, be prepared to state how many days a week you are able to function. If your disability leaves you unable to do much of anything except between 1 - 2 PM, say so. If the forms are not long enough or you need additional space for more details, make a note on the form that clearly indicates that more information is on the attached page.
12 - If the insurance company tells you to go for an IME (Independent Medical Examination), understand that you are going to be examined by a doctor who is NOT independent - he or she is paid by the insurance company or a third party administrator. 
12 - If you are ordered to go to an FCE (Functional Capacity Evaluation), review your policy line by line to determine if this test is specifically in the language of the policy. These tests are not necessarily required, and they can be dangerous. If you go for the test and you are asked to perform a task that you know you cannot do without pain or discomfort, say no. Be sure to document how you feel following the testing, and consider seeing your treating doctor shortly after the testing for a further evaluation.


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## Kit

thank you good info!


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## Mike58

Merry Christmas and lets all hope for a Happy New Year in 2014.

Mike58


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## nogutsnoglory

I'm so pissed off with this do nothing congress that won't extend unemployment benefits to those who are jobless. It really sucks being lumped into the label of bum. Many of us are looking but have challenges such as lack of access and disability. This is not very in line with the Christmas spirit ;(


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## Kit

NGNG how frustrating!  I hope something transpires for you!  May God direct your path.


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## nogutsnoglory

Thank you it's upsetting and more so knowing that there are others not as lucky as I am. Thankfully I have my family's support and I won't be without a roof and food on my plate but some really don't have that luxury. I hope when they get back in session the two parties can agree on something.


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## indianhart

Jennifer, I would appreciate a Q & A about SSI, SSDI.  applied 2x already and was denied.  I have Crohns and work 35 hours weekly.  I'm exhausted and it I exhaust my sick/vacation time yearly.  Could use some help with this.
Thanks.


----------



## lblair

Jennifer how long did it take for them to denie you each time??? Just wondering I have applied in July and still waiting??? Thanks Good luck!!!


----------



## Jennifer

indianhart said:


> Jennifer, I would appreciate a Q & A about SSI, SSDI.  applied 2x already and was denied.  I have Crohns and work 35 hours weekly.  I'm exhausted and it I exhaust my sick/vacation time yearly.  Could use some help with this.
> Thanks.


Putting something like this together will take some time.

Did they give you a reason why you were denied both times? Were you going it alone or using a lawyer?




lblair said:


> Jennifer how long did it take for them to denie you each time??? Just wondering I have applied in July and still waiting??? Thanks Good luck!!!


From what I recall it can take around 6 months or longer to get a reply. Try contacting them to check the status in case your letter was lost in the mail or something (you only have about 60 days I think, to appeal if you were denied).


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## lblair

Okay so I got my your not approved letter from SS a little upset the Dx are not right one of the main dr that have treated me for depression and anxiety are not even listed as files requested and they have my job all wrong??

Umm no wonder why you have to appeal a number of times for them to get everything right takes you hours to apply and months for them to say no!!!

Thanks needed to vent


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## pink&green

Sorry to hear that Iblair, my husband applied this past September and we are still waiting. Definitely appeal keep fighting till you are approved.


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## kristihelene

Good news! My GI 100% supports me applying for SSDI! That was the most nervous I've ever been for an appointment and so incredibly thankful to have a doc that gets it!!!


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## misterdave

I'm trying to wait out the process until the disability trial...but my family is running out of money supporting me. How are people paying their bills who can't work? What sort of Crohn's grants are people getting? Any advice would be appreciated.


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## exit4

I am on disability because of Crohn’s and Crohn's complications - abcceses, fistula, back pain, depression. It is not an easy process, but if your doctors support you and you can document your disability for at least a year, it’s possible. It took me 1 ½ years and I was not able to work at all – not few months here and there. First, I was on short term disability from my work, then that rolled over to long term disability. The long term disability insurance made me apply for SSDI and assisted in filing the paperwork. I was approved the first time. 
All my doctors were on board and I had all my documents from multiple doctors that stated -I am unable to work, that my complications prevented me from holding a job. 
Here is a link to more info I posted that also maybe helpful: http://www.crohnsforum.com/showthread.php?p=730493#post730493


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## Mike58

Found out this morning that my private LTD company will be denying my claim because they have a pre-existing condition clause in their policy.  I now have an attorney working with me to determine what is really a pre-exsisting condition.  I still have not heard from SSDI.  My attorney wants me to call SSDI and ask where I am in the process.  Guess it can't hurt.  Has anyone else called SSDI to check on their claim?


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## Jennifer

Is your lawyer not handling your SSDI claim (if so can't they call?)? I'm sure Social Security will likely say that the decision is still pending but no harm in checking.


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## Mike58

I've been doing the leg work on my disability claims so far.  It gives me something to do.  My attorney is a good friend of mine who has offered to help and represent me to both disability sources.  I am very fortunate to have him as a resource in this long battle.


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## kristihelene

Mike- how long ago did you apply online?


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## Mike58

I appied to SS on 12/5/2013 for my SSDI.  My case is still under medical review.


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## kristihelene

Mike - I applied shortly after you!! If you don't mind, can you throw up a reply on this thread when you do hear back?? Selfishly, that'll give me an idea of a timeline.


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## kristihelene

Also - does anyone know if I can add info to a submitted app? I got a port placed after I submitted and wanted to add it in - figured it could only strengthen my case


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## Mike58

I'll do that.  I am going to call SSDI just to inquire of any progress.  I'm sure they won't be able to update my status but I thought it might be worth the try.


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## exit4

To Mike - wow LTD denied you!? Definitely ask/or have your lawyer get to see your policy - you paid/or your employer paid in to this for years! It's there for exactly that! There should be a review process or some type of legal action you can take!
Who is your LTD? My is Prudential and they actually made me apply to SSD - this way they only have to pay portion that SSD does not cover - it's in their interest for you to be approved.


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## Mike58

Exit4,
My LTD is with Hartford.  They have a preexisting clause in their policy.  I started working for them on October 8, 2012.  The LTD policy started on 11-1-2012.  I was diagnosed with Crohn's on 10-31-2012.  I went onto STD on 7-9-2013 with no problem.  That lasted until 1-5-2014.  That's when they started talking about the preexisting condition.  My lawyer is looking into the policy as we speak.  And yes, I did pay separately for the LTD coverage.  Unfortunately,  the company I worked for did not provide us with a copy of the policy when I signed up.  There is an appeal process that we will be looking at.  Keep me in mind if you have any other ideas come up.  Thanks,  Mike


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## Write2bheard

Exit4 I also have Prudential but they denied my LTD. What did you provide to convince them?


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## exit4

I went on STD after I had a fistula surgery, it would not heal for month’s. I couldn’t sit due to the pain, I leaked post BM and was very depressed. Mind you, I lived for years with belly pain, urgency, dria,fistula, arthritis, depression and all the other lovely Crohn’s gifts. It’s the fistula surgery (fistulatomy) that put me over the edge.
When my STD ended, HR at my last employer (I worked for the same company for over 10 years) send my file over to LTD (Prudential).  Prudential sent me and my doc’s daily regiment questioner/form.  I told then the truth - Because of my situation at time – non healing fistula, leaking post BM, unable to sit for any prolong time, depression, fatigue, arthritis I can’t be in the office and do my job.  I also worked in IT and was responsible for business critical applications. Not being 100%  24/7 pretty much made me useless in that capacity. In that form I had to document my typical daily: How long I typically sleep, how is my sleep, do I wake up during the night to go the restroom due to my pain, etc. Then what do I do after I wake up: how many and what types of pills I take, do I forget to take pills, how often I forget, Do I have depression, how does it affect my cognitive and mental ability, do I feel confused and unable to concentrate. Can I make my own breakfast, how many times per week can I make my own breakfast. Can I do any chores and what type I can do in the house, can I drive myself to the doctor, how long can I sit in the car, can I take a walk outside, how often and how long, etc. Basically I described my worst day as that were most of my days per week anyway – some days I feel better and I can make breakfast, take a walk with my dog for one hour, then I need to lay dawn due to pain, dizziness, etc 
I went to all the hospitals I was admitted for the past year and had them make me a copy of my records (some I had to pay 10c per page) that showed my surgeries, infections, complications, etc. I also got copies of my record from my surgeon, my GI, my family doc, my therapist, my second and third opinion surgeons and GI’s. All that info was added to the package and sent to Prudential. All my docs were on board with me and agreed to fill in their parts in the forms. Then my wife got a form to fill up because I listed her as a person I live with that helps me on daily basis. She described my worst day and my best day – I am able to do few things 2 times per week, the rest of the week she does house chores, walks the dog, etc.
Can’t stress enough how important documentation is – that is all that I had to prove that I AM UNABLE TO WORK. It's been now 3 years and few more hospital stays, fistulas, remicade, humira and now MTX. Most days I am ok - I learned to deal and live with my issues, but NO WAY I am able to go back to the stress and daily grind of work. I am very lucky that I have a wonderful wife that has been with me for 30 years. We had many great years and many terrible years, and I am not talking just about my Crohn’s – many deaths in the family, addiction, financial trouble, marriage issues.
All the best to you all!


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## Write2bheard

Thanks for the detail.


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## Jennifer

I'm going up for review again tomorrow at 1:30pm PST to see if I still qualify for disability. These phone interviews are always so stressful for me. I'm not looking forward to it. If they decide that I'm no longer disabled then I'll have to contact my lawyer which I've had to do once before years ago. I'm hoping it goes well. I'll post what sorts of questions they ask after the interview if anyone is interested.


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## Mike58

Jennifer,
Best of luck with your phone interview.   I'm filling out a packet that SSDI just sent me requesting more info.  It is stressful just doing that.  It's kind of humorous when they ask for a list of your medications and they give you 10 spaces.  I need double that.

Exit4...thanks for your insight.   It really helped when I was filling out that section where they want to know what my day is like.  Also, it amazes me how us Crohnies get use to our limitations and think of them as normal.  No one else would be doing that.  Again, thanks.

Mike


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## carbuncle

Hi Jennifer,

I would be interested in the quesions asked, as I maybe goint that rouute later this year.

Best Regards,
Carbuncle.


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## valleysangel92

Hello all 

Ive been out of education/work for roughly 15 months after leaving university due to severe symptoms. Since my surgery in June last year, I have been on Employment Support Allowance (ESA). I filled in the questionnaire straight away and then didnt hear anything except for being asked for sick notes which my GP provides every month or so. Last month, i got called in to do an informal interview with my jobcentre, the person I saw was very sympathetic and understanding, and told me if i dont feel well in future and i'm supposed to have an interview, just call them and say no. However, she did say that I am on the waiting list for an ATOS assessment which is the fit/not fit assessment we have, to be honest, a lot of people here dont trust them very much, they have proven to be unfair in many cases. 

I was wondering if anyone knew if having a letter from a consultant or GP carries any weight in assessments like this, and if being deemed fit for work means that you have to pay any of the money you've been getting back?


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## Jennifer

The interview is over. It lasted for about 15 minutes. Keep in mind that I already receive SSI and that the interview is meant for determining if I still qualify for disability benefits.

A lot of it was verifying information at first. After that I was mainly asked about any income or assets that are in my or my husband's name. They need to know if you have any stocks or bonds, life insurance policies, how much is in your bank account/s currently (checking and savings or any other accounts you have although I was not asked how much is currently in my husband's account, just mine but they would have asked the amount if we had a joint account but we don't), if you own any property such as a house or vehicles. If you recently got rid of your vehicle they need to know how and if you sold it they want to know how much it was sold for (my husband's car was sold for $200 to a junk company and she wrote it down that it was, "junked"). They also asked if I have any other health insurance besides the one they have listed. They asked if my husband is also disabled and if not they asked where he works currently. I was asked how much my rent is but they didn't ask about utility bills which they usually did in the past. 

The only health related question I was asked was, "have you been hospitalized either in a hospital or institution for a month since 2012?" Being hospitalized for 3 days with a blockage doesn't count apparently but I mentioned it anyway since the call was being recorded. 

Basically the purpose of these phone calls is to find out if I'm in financial need of disability benefits. If they find that I don't need the money then they will take away my disabled status. Makes a lot of sense huh? If I have enough money then I don't need the extra cash and that means that I'm not disabled. :yrolleyes: You don't get a chance to prove that you're disabled until you're denied benefits. I'll find out if I still qualify for SSI by mail.


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## valleysangel92

Wow...  I thought the UK system was bad..  But at least most of the questions we get are at least health related (if a little stupid and overly broad) .. I think I was only asked maybe 3-4 financial questions.  Do they even inform you of the threshold at which they deem you have 'enough ' money and aren't disabled/ don't need the help?  

I hope they wake up and give you what you're clearly entitled to!


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## Jennifer

There is a financial cut off but I don't know the numbers off hand (could even vary from state to state most likely) yet I think the financial side can be overlooked if you're EXTREMELY disabled like being hospitalized for a month straight or more. Honestly if I were in the hospital that long these days, I'd want to be transferred to another hospital. :tongue: I was in the hospital for well over a month before I was diagnosed in 1991 but that was because they didn't know what I had and they kept me to continue testing and keep me on TPN. 

I doubt my husband's part time job at CVS (a chain pharmacy) is enough for me to lose my disability status. I guess my main concern is that I haven't been hospitalized for a month.


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## kristihelene

Jennifer - to be clear, this was for SSI not SSDI, correct?? I am awaiting their first decision for SSDI - which I am pretty sure is not income based, right?


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## Write2bheard

SSDI is based on work history and is not income based.


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## Jennifer

kristihelene said:


> Jennifer - to be clear, this was for SSI not SSDI, correct?? I am awaiting their first decision for SSDI - which I am pretty sure is not income based, right?


Yes that was for SSI not SSDI. I spoke with someone at SS today and they mentioned that SSDI is not income based (so my husband's income wouldn't matter, now I'm wishing I had that).


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## kristihelene

Is it too late to apply? They're separate benefits - my lawyer wanted me to apply for both until he learned my hubby's incine


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## kristihelene

Edit: income**


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## Jennifer

I honestly have no idea. I started getting SSI in 1995 and I believe SSDI is based off of your income (work) so not so sure about that one.


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## kristihelene

Jennifer,
According to my lawyer, SSI is solely income based where as SSDI is a SEPARATE benefit that is solely disability based - I filled out a lengthy (several hour long) questionairre with medical history info and my GI and PCP had to fill out functional inventories for SSDI.  The determination is based solely on my ability to perform my/a job.  My lawyer said he encourages all of his clients to apply for both, because SSDI is only a percentage of your average income from your lifetime.  Not sure if that is something you are interested in, but figured I'd share the info.


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## pink&green

Hubby received a call from SSA asking about his fistulas he goes to the CRS Wednesday he also has an abdomen X-ray scheduled for Thursday( he's having pain where his resection was). Hopefully we here something soon.


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## mdd

Hi.  I was blessed .I did get my DISABILTY  only after my heart  bypass ready to back to work after 4months one collapsed . That was it!  I filed and everyone said I would have to fight .And it would take a long time.  I got it ! It hit me hard knowing how sick I was  when I got D. I thought I was fine!  I got depressed for a long time. Having D. Reminds me that I'm REALY SICK!  I do want to do something like help in the food bank . But cannot commet because do not know flair up I will have! So I work around the house, shop( realy,walk ) around the stors. Go to the gym. ( that's my job)haha. And talk to you nice people . I feel I can help  just one. As you guys help me . But would say  I copy everything any thing I get in the mail Anything. From SS . I keep in a folder. Doctors , hospital records . They are our reports . They may charge  you . So I have copy's to new doctors saves time!  Take care you all! Maria


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## yosemitegirl

Generally, SSDI is more $$$ than SSI. I was a stay-at-home mom, with a history of only part-time work. Still, I receive more from SSDI than SSI.

Also, once Crohn's was added to the federal list as a disability in 2010, it has become easier to get approved. I didn't have any problems and was approved with first submission. It is an added burden for you that have had to fight. 

I still miss work, but hit my tipping point despite my best efforts. I did not give a reason why I left... wasn't required to. Pretty obvious by my poor attendance. Management was not understanding and despite reducing my hours and getting some protection from the disability people, I was tired of the struggle.

Crohn's can affect every part of your life. That's what many on the outside don't even think about.

The best to everyone...      Michele Lea


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## afidz

Not really sure why I am not in this support group. I am unemployed and about 2 months away from my court hearing (been denied twice)


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## Jennifer

You'll get it soon afidz!


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## 2thFairy

afidz said:


> Not really sure why I am not in this support group. I am unemployed and about 2 months away from my court hearing (been denied twice)


I'm sure you've already been told this, but in Texas, it is almost automatic that you will be denied twice.  I'm glad that you kept with it.  Do you have a lawyer?  Unfortunately, it is your best chance of succeeding.  I went through the whole disability thing 15+ years ago and did finally get it.  I'm not on it now, but it was a good thing when I needed it.  Don't give up!!


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## afidz

Yea,  I do have a lawyer,  can't imagine doing it on my own. Really hoping I get it!


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## yosemitegirl

Afidz... have followed your posts on different forums. If anyone is a no-brainer to qualify, it's you.

I qualified 1st time, and hearing others' struggles really angers me. Like you need that stressor.

What really is mind-boggling is even when approved you have to pay for your insurance for 2 years before Medicare kicks in. And COBRA lasts only 18 months. So for 6 months I paid almost $700 a month for coverage. Almost my entire SSDI benefit. Insane...

Best wishes to you all... don't give up.

Michele Lea


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## afidz

Everyone I have talked to says that I should get it.  And I really hope I do.  I am just afraid to get my hopes up and then be let down.  
However,  I got a letter from the judge who is hearing my case explaining what he looks for in a case,  if my lawyer does what I hired him to, I do qualify under what the letter said.  About 2 months to go!


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## Kit

Good Luck Afidz!


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## Stardust_Fiddle

yosemitegirl said:


> What really is mind-boggling is even when approved you have to pay for your insurance for 2 years before Medicare kicks in. And COBRA lasts only 18 months. So for 6 months I paid almost $700 a month for coverage. Almost my entire SSDI benefit. Insane...


Same here. I had to pay $851 per month for my health insurance, which was more than my SSI payment, until I was approved for Medicaid. Ridiculous.


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## Write2bheard

Very frustrated and depressed. Tests don't show the issues I am having and I feel like doctors think I am making stuff up. I manage, coordinate, and write proposals for government contracts. The fatigue and brain fog make it difficult to do this time constrained and stressful work. How do I prove that I am not just too lazy? Not working has put huge financial stress on my family. Why would I give up a $100K job?  I've been offered several consulting jobs but always fear I'll flare and not be able to perform. Is anyone else having this problem. In afraid my LTD Appeal will be denied because there is no medical test to prove my problems.


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## afidz

Have you hired a lawyer?


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## Write2bheard

Yes


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## afidz

I have been working on disability stuff, and let me tell you, I am stressed out. 
I HATE all of their stupid paperwork. I am 25, so when it asks for 15 years of work history I have to go back to when I was 16. I had so many pointless jobs that I don't even remember and they have nothing to do with my inability to work.
My lawyer sent me a video of a  mach hearing, I guess it eased my mind a little bit, but I want to know about your experiences during your hearing. ANyone?


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## kristihelene

I got my initial denial yesterday. They didn't even get my surgical history correct as they cited my most recent surgery being in 2011 as a reason that my disease is "working toward being under control" when my most recent surgery for crohn's was Nov of 2013 ... My last day of work! Ugh! Anyway they definitely don't get the brain fog aspect... My lawyer said that will be the benefit of the trial, I can explain all of that! The letter says to expect about 12 months till the hearing, and it's frustrating to be left in limbo and not making ANY MONEY in the mean time so as not to hurt my case  I just wish they could spend a few days with me and see that I can barely get through showering and getting ready, much less work for 8 hours ... Sigh!


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## exit4

Sorry to hear you got denied, but like you said, it will be one more  plus on your side during a hearing. Also, when you do start receiving disability it will be prorated and you will get a big back pay check. I know, it does not help you now – not having an income – hang in there!


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## afidz

Kristihelene, it took about 12 months to get my hearing (well, 9 months, but by the time I get my hearing it will be 12 months)
I found babysitting jobs to keep me floating until I am granted disability


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## kristihelene

afidz said:


> Kristihelene, it took about 12 months to get my hearing (well, 9 months, but by the time I get my hearing it will be 12 months)
> 
> I found babysitting jobs to keep me floating until I am granted disability



Thanks... I'm assuming a 12 month wait as well. I heard they monitor you on the interim so I'm afraid to do anything like babysitting... Idk if that's true though? Ugh its so disheartening that it's not understood!


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## afidz

I am not sure how much they look into your daily activities, I have heard of different things. I am cautious about what goes on facebook and I have my privacy settings set to the tightest perameters (which isn't much) just to be safe


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## jumpingjacks99

My crohns hit right after I graduated from grad school, and I spent a year in a period of intense crohns pain.  It was a full time job, seeing doctors, arguing with insurance companies, losing blood, resting, extreme pain.  And after a year when I started getting out of the woods... I am now long-term unemployed.  I can't even get callbacks.  It wasn't easy before in this economy, and now it's impossible.  And since the last thing I did before this period was school, I don't even qualify for unemployment benefits.  I'm living off my dad's social security that he is gracious enough to share with me.

It's been rough folks.  Not gonna lie.  There was a LOT of depression.  There still is but I have been seeing a therapist.  Which has its own difficulties.


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## jumpingjacks99

Got my diagnosis just as I was turning 24.  I'm 26 now.  Unforunately because I'm not a minor, and because I decided to go into grad school, and because my last two jobs were unpaid internships, I am just THREE MONTHS shy of the work experience required to go on social security disability.  If I don't have a financial caretaker I just.... I don't know what to do.  I'm feeling better now and I've been looking for jobs for months and nothing.  It's really depressing


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## afidz

There are 2 different types of disability. SSDI and SSI. I get them mixed up, but one of them is for people that have not contributed enough to the system. Have you sought out legal advice? Disability lawyers don't get paid until you win, so its beneficial to hire one from the beginning


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## jumpingjacks99

afidz said:


> There are 2 different types of disability. SSDI and SSI. I get them mixed up, but one of them is for people that have not contributed enough to the system. Have you sought out legal advice? Disability lawyers don't get paid until you win, so its beneficial to hire one from the beginning


Thanks! Yeah, there are definitely two and I always mix them up also.  It's been a while since I've tackled this particular issue, but I recall talking with an SSI rep about the other one and their conclusion was because I had over some certain amount of savings and assets, I was ineligible for the second kind as well, and the stipend they offered wasn't even enough to pay my rent anyway.   So I missed the first one because I didn't work enough and the second one because I worked enough to have some savings.  Crazy right? But savings don't mean income.  

I guess they want me to burn through it all and lose my apartment and then call back


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## afidz

Try to talk with a disability lawyer, like I said, they don't get paid unless you win so it doesn't hurt to see if they would take on your case.

EDIT: Jumpingjack, I copied our conversation from young adults support group into here because I think its beneficial to both support groups


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## jumpingjacks99

afidz said:


> Try to talk with a disability lawyer, like I said, they don't get paid unless you win so it doesn't hurt to see if they would take on your case.
> 
> EDIT: Jumpingjack, I copied our conversation from young adults support group into here because I think its beneficial to both support groups


Thanks for the tip, I will give that a shot.  I'd much rather go back to work than be on disability, but siphoning off my dad just doesn't feel right.


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## kristihelene

SSDI is solely disability based and your household income is not relevant. If the government determines you are medically disabled, you can then collect SSDI if you meet their work experience requirements (there are certain # of months per age range). A lawyer is the best route for SSDI, and if they accept your case, most will only take a portion of your first check (back check). SSI, on the other hand, is completely income dependent and looks and your household income for eligibility. Hope that helps a bit.


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## misterdave

Hello, I am going to my first public hearing for Crohn's Disability and wanted some advice from those who have done it. Will they be attacking me at the hearing? Will my lawyer defend me? What do the SSI people attack at the hearing to prevent the victory? Keep in mind, I also suffer from anxiety, depression, PTSD and perianal disease. Any advice would help. I just want to beat this thing so I can have the proper financial "bridge" to defeat Crohn's. Thanks.

Btw: This hearing has me very nervous. I'm vomiting and going to the toilet a lot because of it. I dread it.


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## afidz

My hearing is coming up in June. My lawyer sent me a video of a mock hearing so I can prepare myself and know what to expect. 
In the video, it was a very calm atmosphere. Its just the judge, your lawyer and you. The judge asks a few questions but really its your lawyer asking you questions about your health and the judge just listens, they may ask you questions on something they were unclear of.  The judge that is going to be hearing my case sent me a letter of what he looks for when he decides disability cases. One of the things he is looking for is if the person has been unemployed for 12 months and if they will continue to be unemployed for an additional 12 months and if he can understand why you can not get gainful employment. 
If you can try to get a meeting with your lawyer to address all of your concerns, you definitely don't want to go in blind


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## misterdave

Thank you. I will ask my lawyer for a mock hearing video. I just want to get it over with. I hope they are compassionate. It would give me the bridge I need.


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## Jessi

I just did an online application for disability. I have done it once before and was denied. My problem is that I pretend to be super healthy when I am around people. I have never been a complainer, and my optimism is getting in the way of qualifying. 

I live by the "fake it til you make it" philosophy, but strictly in a high-standard way. I can't seem to get myself to show my illness in an interview... not even with my own doctor.

Even writing this, I feel like I am whining. Am I the only one that does this? Any advice?


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## 2thFairy

Jessi said:


> I just did an online application for disability. I have done it once before and was denied. My problem is that I pretend to be super healthy when I am around people. I have never been a complainer, and my optimism is getting in the way of qualifying.
> 
> I live by the "fake it til you make it" philosophy, but strictly in a high-standard way. I can't seem to get myself to show my illness in an interview... not even with my own doctor.
> 
> Even writing this, I feel like I am whining. Am I the only one that does this? Any advice?


I'm the same way and also had the same problem as you when I went through the whole disability process  many years ago.  I found a lawyer who wanted to see medical records before he formed an opinion about anything, and with this, I was successful.  So many doctors wouldn't take me seriously because I never showed any obvious outward discomfort.  It is a very difficult way to live, but I do understand you.


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## Kit

Hi Jessica,

We have been taught to just keep going, so we feel bad when asking for help or explaining how we feel.   I really almost denied having Crohn's for about 2 years after being diagnosed.  Unfortunately to get disability you need to be honest (from what I have heard) about what is going on in your life.  Is your physician helping you with information?  

Now that being all said, I have never applied.  I would put myself in remission, but still with fatigue issues. Blood work looks good.   

I don't feel I have enough going on that they would think disability would be warranted, even though I don't feel physically or mentally able to perform my chosen profession (Physical Therapist Assistant) anymore.  

Hang in there Jessica.  Maybe even keep a diary of symptoms and how you feel to give you a better grasp on yourself that way you can interpret it better for the disability.  There are many trackers out there that can help you quantify how you feel.

My last thing is I told my patients that telling me what was going on was not complaining.  Complaining is repeating to me many times.  

Good Luck Jessica and take care of yourself!  
Hugs to you

Kit


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## Jessi

Thank you Kit and 2thFairy. You are both a great help.


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## DougUte

Jessi, you and I are too much alike. I have the bad habit of not telling the docs what is really going on. Luckily my GI knows me well enough to realize I do that. I've never applied personally for disability. (After all, somebody in my house needs to work and cover us for insurance.) But I have helped Sandy and my brother apply. And succeeded in getting benefits. When you apply for disability you need to complain about everything. You don't have to stretch the truth, but you do need to complain. I know it is hard, but it can be done. 

You are not the only one who puts on a facade when out in public. I think it is hard not to.


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## misterdave

I threw up 40 times this weekend. My hearing is Friday and I'm scared to death. I'm taking a barf bag and my tablet of notes. My lawyer put me through an intense 2 hour mock trial preparation. It helped my confidence. Even the head guy at the firm stepped in and cross examined me. There will be myself, my lawyer, the judge and some court reporter person/ssa secondary in the room.

I'm tryin to be strong. I'm listening to Curtis Mayfield and playing with my cats. Watching 70s and 80s cartoons also helps.  

Peace. If I win...you will hear from me again.


----------



## afidz

Does your GI know you are throwing up so much? If not, I would let them know and maybe even go to the ER
Good luck on your hearing. Mine is exactly one month after yours and I am shaking in my boots thinking about it. 
I hope that we hear from you regardless of the outcome of your hearing! Did they say how long it will take for you to find out if you won?


----------



## 2thFairy

My lawyer gave me the unofficial word that I had won right after my hearing, but it seems like I didn't get the official declaration for about 3 weeks after the trial.  It was about 20 years ago when I did mine.

Going through the process can be really humiliating, but if you need disability, you need disability.  

This is jumping ahead, but also know that if you decide to take yourself off of disability, the process to stop payments can take up to a year, and then you are expected to pay back whatever they sent you since you first requested to be taken off of it.  I had a really hard time getting them to stop my benefits when I no longer needed them.


----------



## afidz

Thats good to know 2thFairy. I hope my lawyer can unofficially tell me whether or not I won. This whole process is probably the most stressful thing I have ever done.


----------



## 2thFairy

I was really stressed out too.  I almost passed out in the middle of it.  

The judge didn't ask me very many questions at all.  It was mostly just the lawyer presenting my medical files and referring back to disability laws, and showing how the criteria matched up.  It didn't take long at all, but felt like forever.


----------



## Jessi

Thanks Dougie. I appreciate your input. :hug:


----------



## afidz

My lawyer had mentioned hiring an expert witness I am not sure if they have or not.


----------



## Jennifer

Sounds like your hearing will go well misterdave.  Let us know how it goes no matter the outcome. We're here anytime if you need to talk.


----------



## pink&green

Listening to Curtis Mayfield will ease the anxiety misterdave. Make sure you get a good night sleep Thursday night praying for a favorable decision.


----------



## Kit

May God's peace be with you MisterDave.  Continue to take care of yourself and I agree you need to get something for throwing up.  If anything an IV to replace fluids.  I don't think people realize how much stress will aggravate our symptoms!


----------



## exit4

You said the magic phrase 2thFairy!
"Presenting my medical files". Records. Paperwork. That is what crucial from the very first time you applied for SSDI and all the way to disability hearing.  Must! Must! Must have all your doctor visits, doctors records, aches, pains, surgeries, procedures, disabilities (difficulties performing in home, at work, etc) – all you medical history presented that shows “you can not perform YOUR CURRENT job at all, (not, I had a bad week/month's) or ANY similar work equivalent with your education and job experience. Good luck to you all!


----------



## 2thFairy

My lawyer had two doctors that worked in his office, that he hired specifically to comb through medical files and select the most pertinent parts.  They were husband and wife from another country who wanted to improve their English and become more familiar to the whole American routine of practicing medicine.  The process was beneficial for all parties involved.  I thought it was a really cool thing.


----------



## misterdave

I got through it, gang.  My lawyer was confident afterward. I will click my heels when the verdict comes. Which could take 8 weeks. 

BTW: Threw up twice before the hearing. I was pale as a ghost...but got through it. The judge was gentlemanly and had kindness in his voice. I'm praying still.


----------



## Kit

I am so glad you made through it and I hope you get a favorable verdict soon!  Take care of yourself!  Maybe with some of the stress gone you will feel better!


----------



## afidz

13 days and counting until my hearing.  Trying not to think about it too much but how can I not?


----------



## Kit

Afidz, May calmness surround you!


----------



## pink&green

Praying for a favorable decision afidz.


----------



## afidz

I just got off the phone with my lawyer, hearing is on Monday. I am SO NERVOUS 
Basically what she said with my case, the biggest challenge is my age. We went over her plan to try to prove that despite me being young, and the fact that I could easily find a job, I would not be able to keep it because of my health. She feels like I have a strong case, its just my age that is going to be hard to get passed.


----------



## 2thFairy

I think I was 26 when I did the whole court thing for disability (in Dallas, even).  Age didn't seem to play much on the mind of the judge.  

You shouldn't have any troubles on Monday, afidz!


----------



## Ali29

Good Luck Afidz!!!  I hope you feel better soon.  Keeping you in my thoughts - please don't stress, you have so much going on now certainly the judge will see that age or not!  :ghug:


----------



## nogutsnoglory

My COBRA is almost up and I can't work right now. Does medicaid have an enrollment period and how long does it take? I'm really scared of losing coverage. I could apply for Obamacare but would need to wait for the enrollment period to open which isn't till the fall. Even than im not sure insurance kicks in right away.


----------



## Mike58

NGNG,
Not sure about Medicaid as that is state ruled.  I would contact your Medicade office and get the scoop.

I also wanted everyone to know that SSDI may be catching up with their backlogs.   I applied on 12/4/2013 online and the only contact I had was a letter dated 3/7/2014 introducing my examiner to me.  I received a phone call on 6/4/2014 from my local SSA office telling me that I was accepted for SSDI.  At first I thought this had to be a scam call but after the caller answered some of my questions, I thought this may just be real.  SSA just deposited my back payment today.  You could push me over with a feather. I didn't have a hearing or anything.

I was told by the adjuster that because I filed online and had multiple qualifying medical conditions that it was actually easy for them to make the decision.  
Everyone still needs to hang in there.  If you have other illnesses comes up, send in a doctors report.  That's what I did.

Mike     :ylol2:


----------



## afidz

I think in Texas the enrollment period is 2 years ( I really honestly don't know) Are you under 27?


----------



## afidz

OH! but I did just think of something. Most of the time you can't get insurance unless you have a qualifying event or you enroll during the enrollment period. One of the valid qualifying events is if you get dropped from your current insurance policy. Which, you will if your COBRA is going to run out. Look into it, that loophole saved me a few years ago


----------



## nogutsnoglory

Yeah im too old to go on parents insurance but I did see the qualifying event and was wondering if that applied to losing COBRA. Thanks, that definitely takes off the edge a bit. I hope whatever insurance I find covers all my expenses.


----------



## Kit

Hang in there Afidz!  God is in Control!


----------



## LodgeLady

Praying for both of you Alfidz and NGNG.


----------



## Kit

NGNG try looking into the big insurance companies and see if they have a group policy that isn't connected to your employer.  I don't know what is out there, or who has them, but I thought I had seen some somewhere.  It is scary to think of no health coverage, especially for us.  Good Luck and sorry I couldn't be of more help.


----------



## pink&green

Congratulation Mike. NGNG try your state for meidcaid or other state insurance in Oklahoma they don't offer medicaid but they do have SoonerCare.


----------



## DougUte

SSI did a review on my wife last fall. In November they issued a decision that she is no longer disabled and they would cut her off after January 2011. We had 10 days to file an appeal if we wanted benefits to continue during her appeal period. We filed the appeal timely, but it was months before we heard from the social security office. I expected that because of their backlog, especially after the government shut down last fall. 

After February 2014, with no further communication, SSI cut her off. We had some cash in our account, and stupid me, I did not realize the SSI deposit was not in our account until after March. We contacted the social security office in Salt Lake and were told they never received the appeal. We were also told that her case would have been handled out of a different office (Ogden).  They gave us paperwork to file a late appeal.  Last Friday we received a phone call from Social Security in Ogden and was told........ They found our original appeal. But they are claiming it was not received by Social Security until January 2014 (I can't remember the date) so... because it was not received in 10 days from the determination, they will not continue benefits while the appeal period is in process.   This has been so frustrating.  It is effecting our ability to pay our bills.


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## Write2bheard

Was approved for SSDI. Got a check last Friday and the letter today. Didn't even have to have a hearing. Now if only my insurance company would bite the bulletin and approve my LTD, I could breathe easy. Don't know how they can deny it since only requires I not be able to do my current job and SSDI requires I not be able to do any job.


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## afidz

Congrats on winning! 
Its been 8 days since my hearing and I am all but going mad waiting to find out.


----------



## Write2bheard

We are all rooting for you afidz.


----------



## pink&green

Sorry that you are having a difficult time Doug praying for a favorable decision for your wife and afidz. Congratulation Write2bheard.


----------



## DJW

I'm hoping to start working again.  Does anyone have experience getting off disability?  What happens if another major flare happens & I have no benefits?  Do I go through the application process again?

Part-time may be my reality going forward. 

Thanks.


----------



## afidz

Was just about to respond and then I saw that you live in Canada, my response would be pointless! Hope you find the answers you are looking for


----------



## DJW

Thanks.


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## Ali29

Did anyone see the 60 Minutes Segment on SSDI in US tonight?  No wonder we have a hard time with SSDI?  It was very interesting.


----------



## afidz

I did not,  maybe I can find it online
Just watched it on you tube.  I found that segment very upsetting.  Especially that lawyer that is being investigated


----------



## Jennifer

Post the link Afidz.


----------



## afidz

Just saw this,  I will post it tomorrow
On another note,  it's been 30 days since my hearing.  I have yet to find out if I won or not.  My patience is wearing thin...


----------



## Ann Morgan

afidz: In April 2011 I applied for SSD. I used an attorney/lawyer. Choosing a lawyer was the best thing I ever did. Medical records are the key to qualifying for the disability benefits. It took me 21 long months to get a hearing. I had my hearing in January 2013 and I won my case. The judge told me right then and there, in the courtroom, that I had won my case !  Not only that, but I was told that I was going to be receiving two years of backdated pay and I would qualify for Medicare Insurance right away !  I took a cab home from the hearing and I cried all the way home. I was so exhausted from the whole process.  Sure, I had to pay the attorney a fee, but it was worth it. I was found disabled for physical and mental health issues. I have major depression. I have been physically and mentally falling apart for several years now. I am only 54 years old and I feel like I am 84. Is anyone sick and tired of being sick and tired ?  I am !


----------



## pink&green

Afidz have you heard anything? From what I read 2-4 weeks is the norm to get a response has your attorney said anything?


----------



## Jennifer

Last I spoke to Afidz her attorney told her that it can take up to 90 days for a decision. They called her last week I believe to say that they hadn't heard anything yet. Maybe it's a Texas thing to make people wait so long for a decision. Every state is different.


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## DJW

I'm joining this group.


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## afidz

Sorry I haven't responded.  No I still haven't heard anything.  Coming up on 8 weeks since the hearing.


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## nogutsnoglory

Thanks to DJW suggestion I added financial difficulties to the group to broaden it's reach since it's on topic.


----------



## nogutsnoglory

Someone told me yesterday that there is a window to apply for disability and Medicare when you have a chronic condition. She begged me to apply, but im fighting on not giving in yet. Is it true that you can be denied if you don't apply within a set time of diagnosis? Can't I just claim that even though I'm diagnosed for years that the disease took a turn for the worse?


----------



## afidz

There is no way that can be true. Most people that are sick don't go from fine one day to not being able to work the next. It takes time for a disease to progress to the point that they can no longer work. I have been dx for almost 7 years, I am sure if there was a window, I would already passed it and wouldn't be waiting on a decision now


----------



## nogutsnoglory

I'll have to ask this woman what she was talking about than. It doesn't make sense to me either. I know with medical malpractice you have 3 years but I hope that's not with medicare or social security.


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## afidz

And for medicare, you have to be disabled for a minimum of 2 years before you are eligible


----------



## Solidsam

Hi not sure if i'm in the right place.... I'm a  student - uk citizen does anyone know what financial help i can get after getting diagnosed with ibd? Thank u!


----------



## sarahh5397

does anyone know how dificult it is to recieve disability or social security of some sort in the U.S. for crohn's I've had to stop working and can't afford insurance and apparently missed the deadline for this obama care stuff I've applied online but am told it takes around 4 months to find out if you can even get anything. Desperate for some good news!


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## Write2bheard

Sarahh -- I was approved for SSDI first time without even a hearing, but that appears to the exception. I used Heard & Smith from the start. You have to be out of work for a period, but I filed as soon as I was sure it was going to be a long term thing. It took 6 months. By the time it was processed, I'd met the period for having not worked. As to health insurance - a lot depends on the State you live in.


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## Jennifer

afidz said:


> And for medicare, you have to be disabled for a minimum of 2 years before you are eligible


You guys are a little young for Medicare. You'd be getting Medicaid and every state has it's own rules (assuming that's where you got the two year rule because I've never heard of it). You can apply at anytime if you meet the requirements of either being disabled or are low income. Contact Social Services in your area NGNG for more information.


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## sarahh5397

Write2bheard said:


> Sarahh -- I was approved for SSDI first time without even a hearing, but that appears to the exception. I used Heard & Smith from the start. You have to be out of work for a period, but I filed as soon as I was sure it was going to be a long term thing. It took 6 months. By the time it was processed, I'd met the period for having not worked. As to health insurance - a lot depends on the State you live in.


Thanks! I guess that is some good news I will have been out of work about 6 or 7 months when there 4 month period is up. I had never even thought of applying or even that I could until a friend mentioned it. May I ask how far into diagnosis and everything were you? I've only just been diagnosed this year with no surgeries at this point but steroids aren't working so were about to move to some of the more serious meds. and I can't afford any of the bills I already have.


----------



## Ann Morgan

I have read several posts here. One post said that they had had their SSD review and were determined to be eligible to go back to work and so the government quit paying them their monthly benefits.  I just started receiving SSD benefits in January 2013, but I was backdated to two years before that, so I don't know when my three year hearing will actually be ?  Is the hearing three years from the time I start collecting my benefits. If they say I can go back to work and take my benefits away I would be homeless. I am on SSD for physical AND mental health reasons, not just the Ulcerative Colitis. I have had no colon surgeries and I am only taking one medication, Lialda. I had diarrhea for 17 years until 3 months ago I started having severe constipation, which I thought was very strange. I just saw a new Gastroenterologist and I am having a colonoscopy on August 21st. I am not sure I like my new doctor, but I have new health insurance this year and I have to chose doctors within the "network" I signed up for. Anyhow, I hope SSD does not take my benefits away. I have plenty of current medical records that they could review. I already suffer from joint and arthritis pain, but it is becoming way more severe than ever. I cannot move my neck, I cannot lift up my arms and I have hip pain. I also have foot pain, gastro issues, kidney issues, thyroid issues and mental health issues !  I have it all.  I think the mental health issues would be the main thing that would keep me qualified for the SSD.  I am really messed up and I don't think I could ever work a job again because of it. Sorry this is so long. I feel like venting today. I just had a one hour crying jag. ( Sigh ).


----------



## Write2bheard

sarahh5397 said:


> Thanks! I guess that is some good news I will have been out of work about 6 or 7 months when there 4 month period is up. I had never even thought of applying or even that I could until a friend mentioned it. May I ask how far into diagnosis and everything were you? I've only just been diagnosed this year with no surgeries at this point but steroids aren't working so were about to move to some of the more serious meds. and I can't afford any of the bills I already have.



I was diagnosed in 2012 and struggled through most of 2013 including a stay in the hospital and numerous fistulas. I went on short term disability the end of August and was denied LTD. My appeal was submitted in May and the insurance company has extended their response time once already. In January I decided to go ahead and file for SSDI and contacted one of the firms listed on CCFA web site. I was surprised to be awarded benefits without even requiring a hearing. According to the letter I received I will be eligible for Medicare after 2 years. Fortunately I am covered on my husband's insurance. All States have Medicaid, but it depends on the State what income requirements they have.


----------



## sarahh5397

Write2bheard said:


> I was diagnosed in 2012 and struggled through most of 2013 including a stay in the hospital and numerous fistulas. I went on short term disability the end of August and was denied LTD. My appeal was submitted in May and the insurance company has extended their response time once already. In January I decided to go ahead and file for SSDI and contacted one of the firms listed on CCFA web site. I was surprised to be awarded benefits without even requiring a hearing. According to the letter I received I will be eligible for Medicare after 2 years. Fortunately I am covered on my husband's insurance. All States have Medicaid, but it depends on the State what income requirements they have.


thats helpful information I will look the website I know a lot of states changed there policies for medicare and madicade but of course Indiana wasn't one of them and since I am not married and have no kids and am not currently pregnant I can't get any help alone the only way i could receive it is through disability but other than applying I dont know what else I should do in the mean time to help my case along.


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## Jennifer

What about the Healthy Indiana Plan (HIP) program sarahh5397? http://member.indianamedicaid.com/am-i-eligible/eligibility-guide.aspx


----------



## Kit

I think I read that you need to apply for Social Security Disability within 5 years after you stop working.  Not sure where I read that, but that is what was in in head.


----------



## sarahh5397

Jennifer said:


> What about the Healthy Indiana Plan (HIP) program sarahh5397? http://member.indianamedicaid.com/am-i-eligible/eligibility-guide.aspx


waiting list I honestly tried every avenue I know of.


----------



## pink&green

Kit said:


> I think I read that you need to apply for Social Security Disability within 5 years after you stop working.  Not sure where I read that, but that is what was in in head.


That's correct Kit I believe the 5 years is for work credits. Your benefits are based on your work history.


----------



## Jennifer

SSDI is based off of work history but not SSI.


----------



## Kit

thanks pink and green.  I have thought about looking into SSDI, but I don't think I have the medical conditions/paperwork to back up the claim.  I haven't worked for over a year due to fatigue, but I think my Crohn's symptoms intestinally are in remission.  

Hang in there Afidz!


----------



## mixiestar

does anyone know of a good disability lawyer in VA? I was denied in TN and I think I underplayed my symptoms.


----------



## afidz

Depending on when you were denied,  toy might not be able to start a new application. What stage were you denied in?


----------



## Ann Morgan

dear mixie: The lawyers I used were Binder and Binder. They did a good job for me, but every case is different. Medical records were very, very important in my case. I think they only went back 3 years for my medical records. I had been seeing a lot of doctors and Binder and Binder got all of my medical records from all of my doctors. I hate to bum you out, but it took me 21 months to get my hearing before a judge. But the judge ruled in my favor right there in the courtroom after the case was heard. I also received two years of back-dated settlement pay. I was very lucky. It was worth the wait. A couple years before I got an attorney I applied by myself, online, and I got denied. I did not appeal at that time because I had no idea how the whole SSD thing worked. I received my settlement in January 2013, Thank God. My sister had been supporting me financially for about nine months. I got let go from my job of 24 years at a bank due to workforce reduction in April 2009. I have not worked for five years and I am now physically and mentally disabled. I made pretty decent money before I was let go, so I think I receive more SSD than some of the folks I have met. I don't ever tell them how much I receive but sometimes they tell me. Some folks only get $700.00 per month. I don't know how they live on that. Well, I am rambling on. Oh, yeah, I forgot, I did have to pay the lawyers a fee and it wasn't cheap but it was based on the amount of my settlement. Since I received back-dated settlement pay, their fee was a good chunk of change, but I was still left with a decent amount of cash.


----------



## afidz

In regards to the fee that attorneys can collect:
All disability lawyers charge a contingency fee, you don't pay unless you win.  Per federal laws,  an attorney can only charge you UP to 6k or 25% of the back date amount.  Which ever comes first.  My lawyers are now working for free on my case because they have maxed out at 6k. They CAN under special circumstances, collect more if you won your case,  but it has to be reviewed by the government to do so.  (If your case cost more than the average case for them to produce). I have never heard of anyone paying more than 25% or 6k, but I only discuss such a topic with people on here. 
I would recommend not going with a large firm.  I feel I could of won in first appeal if my lawyer would of spent more time with me.  Go with someone local.  (But experienced) 
Also,  since your in that area,  don't hire Eric Conn as he is under investigation for fraudulent disability cases.  
I'm going to go and try to find the sixty minutes segment, I will post it when I do.  Everyone should watch it


----------



## afidz

Here is the link to the 60 minutes segment
http://m.youtube.com/watch?v=5Fpjcbc4dxY


----------



## Write2bheard

I used Heard&Smith. Got their info after reading about firms specializing in CD. I contacted them in January. I had been on a medical leave of absence from my job since the end of August and was appealing denial of LTD. I was awarded SSD in June with back payment to Feb (when I met the length of time being out of work). According to my award letter, the firm received 1 month of my benefit, which Social Security said was the max under the law. I was awarded SSD without a hearing or being denied. I highly recommend the folks at this firm. I only had to make one trip to the local social security office to provide proof of citizenship. The lawyers took care of everything else.


----------



## afidz

The shorter the amount of time it takes for you to win,  the less money they get


----------



## nogutsnoglory

Anyone know anything about NY Minicobra? Are there any qualifiers or can anyone extend COBRA to 36 months?

I'm thinking anyone. I want to keep my plan because it has been comprehensive and I cost a lot these past few years.


----------



## Ali29

I have been battling my Long Term Disability Company and received my 2nd Denial of benefits.  :ybatty:

Their reasoning is this:  While we agree that you are unable to perform your own occupation as your condition is unpredictable - medical information fails to document any functional impairment that would prevent you from sitting for any period of time using your upper extremities to perform a sedentary physical demand.  (Guess they believe driving or working under the influence of Phenergan/Hydrocodone is acceptable or throwing up and being doubled over in pain at my desk is ok that any employer would accept)

I can appeal again they say or bring legal action and to contact the US Dept of Labor Office or State Ins Dept.   

Can anyone offer any advice - I am at a loss and so upset.  Any assistance would be appreciated - you can also PM me.

Thanks.


----------



## Jennifer

Have you been using a lawyer Ali29? If not then definitely appeal with the help of one.


----------



## Ali29

Thanks Jennifer - no I have not been using an Attorney - I thought that was for SSDI only but I'm guessing for regular Long Term Disability that can be used for also.

Would you suggest one of the SSDI Firms that I've seen advertised or heard of on this forum as I don't have the money to hire a private attorney.

Thanks.


----------



## nogutsnoglory

I am still debating whether to apply for disability but still cling to the hope I can work again. I heard it's bad to attempt part time because they will consider any future disability pay based on the position right before applying for disability and not my previous full time and higher pay one. This seems so unfair and counterproductive to helping people try to get on their feet.


----------



## Jennifer

Ali29 said:


> Thanks Jennifer - no I have not been using an Attorney - I thought that was for SSDI only but I'm guessing for regular Long Term Disability that can be used for also.
> 
> Would you suggest one of the SSDI Firms that I've seen advertised or heard of on this forum as I don't have the money to hire a private attorney.
> 
> Thanks.


You can get an attorney if you're applying for say SSI or any disability claim. I haven't used any of the ones mentioned in this thread so I'm not sure how good they really are. I had a private attorney when Social Security tried taking my SSI away claiming that I was no longer disabled. My lawyer didn't get any payment until my case was won and only took a small percentage which he allowed me to make payments on as I had to pay other bills and rent. They take a percentage of your back pay and do a free consultation. Hope you're able to find someone that works for you.


----------



## mixiestar

afidz said:


> Depending on when you were denied,  toy might not be able to start a new application. What stage were you denied in?


I was denied twice and the last thing I filled out was for "reconsideration of a claim" so I never went before a judge or anything. Things got busy when we were getting ready to move.


----------



## mixiestar

Write2bheard said:


> I used Heard&Smith. Got their info after reading about firms specializing in CD. I contacted them in January. I had been on a medical leave of absence from my job since the end of August and was appealing denial of LTD. I was awarded SSD in June with back payment to Feb (when I met the length of time being out of work). According to my award letter, the firm received 1 month of my benefit, which Social Security said was the max under the law. I was awarded SSD without a hearing or being denied. I highly recommend the folks at this firm. I only had to make one trip to the local social security office to provide proof of citizenship. The lawyers took care of everything else.


Thank you! I will check them out!


----------



## afidz

mixiestar said:


> I was denied twice and the last thing I filled out was for "reconsideration of a claim" so I never went before a judge or anything. Things got busy when we were getting ready to move.


Most people get denied twice. A lot of people finally get through in the 3rd attempt.  Definitely hire a lawyer from here on out


----------



## Ann Morgan

I think that my case is supposed to be reviewed after three years. Now would that be three years from the time they found me disabled ( backdated ) or three years from the time I started to receive benefits ? I think some people get reviewed every seven years ? How does this whole review process work? I am already getting quite anxious about it and I just won my case in January 2013. If my money was taken away I would be homeless. I get scared about everything.( I am getting SSD ).


----------



## afidz

Jennifer was reviewed not that long ago, when she comes on I am sure she will be able to give you an idea of what it was like.


----------



## mixiestar

afidz said:


> Most people get denied twice. A lot of people finally get through in the 3rd attempt.  Definitely hire a lawyer from here on out


Thank you! I am looking into that now. I do not look forward to filling out paperwork for 3 hours but maybe it will go smoother now since I have already done it once. It's awesome that there are people like you that will take time to help others in similar situations. Having been diagnosed with UC about 10 years ago, I never joined any online groups or anything related to Crohn's/Ulcerative Colitis until about a year ago. It's so cool! Usually I feel like nobody understands. 

Thanks everyone!


----------



## Ann Morgan

dear mixiestar: What really won my SSD case was all of my medical records. I think the SSD people just wanted the past three years worth of medical records. Since I had been seeing doctor after doctor about many health issues, I had quite a bit of medical records for my attorneys to collect and for the court/judge to review. I also have mental health issues, so I am convinced that the combination of physical and mental health problems helped me win my case. I wish you luck. Don't quit trying. I know a lot of people give up because they get so tired of applying over and over again or they get sick of the appeals process. I tried to apply online myself a few years back and I got denied. After that I thought it was all over for me and I did not re-apply or appeal or get a lawyer at that time. Make sure that the SSD or your lawyers collect all of your medical records from all of your doctors that you are seeing. Well, this is all I know based on my experiences with this stuff.


----------



## Andysmom

My son is 13 and was diagnosed at age 3. Should I get him on Ss now or is it better to wait till he is older?


----------



## Stardust_Fiddle

Andysmom said:


> My son is 13 and was diagnosed at age 3. Should I get him on Ss now or is it better to wait till he is older?


I could be wrong, but from what I understand, he will likely get more money if he is considered disabled before age 21. I wasn't considered disabled until I was 24, and as a result I get less money than I would have otherwise. The amount is based on the parent(s) income, I believe. Hope this helps!


----------



## afidz

My lawyer called today and said my case has been closed and to look for it in the mail. I'm so nervous!


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## Kit

Hang in there Afidz!  Good Luck!


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## juggys69

Andysmom said:


> My son is 13 and was diagnosed at age 3. Should I get him on Ss now or is it better to wait till he is older?


 Now, right away. Its a lot harder to get on SSI now than it was in the past, and its far easier if you have been diagnosed with a disability before you even reach working age.

 I have two documented disabilities, and this atm is "unknown stomach issues", I was on GPA which does not cover specialists or the tests needed to find out whats wrong. On Medicaid now, so I can actually finally get it documented. This will make three documented disabilities when it is.

 Even with the first two, both on their list, I am now in year seven waiting for them to decide whether or not I am eligible. Even their doctor said I was, yet that isn't enough. What they do is sit you down, look at everything and check off all the jobs you can't do, then see if they can find one they decide you can. They decided at my last one that I could do a ticket sales job, where the boss allows one to lay down and rest at need. Only job they could find, that one, which, as far as I know doesn't even exist, LOL. To top that off, my lawyer made a motion saying that wasn't eligible as a job either as I can't sit for long periods, as even their doctor documented. They noted it and said will send decision. Came back denied, I am in the appeal of an appeal now, LOL.

 I will say, I was stupid and went into the process without an advocate to begin it, as I thought, I have two documented and one that would be once I got SSI and could see the doctors I needed to. I was very, very wrong, a lawyer is needed.

 Before you are 18, the process is a lot easier, so do it now.


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## pink&green

Hoping for a favorable decision Afidz....


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## Ann Morgan

dear juggy: The first time I applied for SSD I just did it on the computer all by myself. Of course I was denied right away. I did not appeal and I figured that was the end of it. A year or two later I reapplied but I got a lawyer. I used Binder and Binder. I went online and started the process. They sent me a lot of paperwork to fill out so that they could get ALL of my medical records from ALL of my doctors and hospitals too. The records that really mattered were the ones that were from the past three years. Those medical records won my case. I also, under advisement ( but not required ) went to a doctor that Binder and Binder works with and had him evaluate me ( for a cost, of course ). I never saw anyone in person from Binder and Binder until I was in the courtroom !  I had just been communicating with them via phone and mail. It took me 21 months to get a hearing date. I had my one hour in court, with my representative. Some other folks that work for the court were in there too ( one guy, I think, was in there trying to determine if I could work the same kind of job that I had previously worked at. Well, the answer to that was no). The judge decided in my favor right there before I left the room. I started to cry because I was so relieved. Then when myself and my representative left the courtroom he informed me that I was getting back-dated settlement back to 2 years and that I would already qualify for Medicare. I sobbed all the way home during my cab ride. My sister had been supporting  me for about 9 months and I had no health insurance at the time of the court decision. I think my case is supposed to be reviewed every three years. My case was not only about my physical health, but also about  my mental health. I think it was my Ulcerative Colitis and my mental health issues that won my case, but I am just speculating. I wish you the best of luck, but don't give up. It is a crazy process. Don't stop appealing.


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## juggys69

Ann Morgan said:


> dear juggy: The first time I applied for SSD I just did it on the computer all by myself. Of course I was denied right away. I did not appeal and I figured that was the end of it. A year or two later I reapplied but I got a lawyer. I used Binder and Binder. I went online and started the process. They sent me a lot of paperwork to fill out so that they could get ALL of my medical records from ALL of my doctors and hospitals too. The records that really mattered were the ones that were from the past three years. Those medical records won my case. I also, under advisement ( but not required ) went to a doctor that Binder and Binder works with and had him evaluate me ( for a cost, of course ). I never saw anyone in person from Binder and Binder until I was in the courtroom !  I had just been communicating with them via phone and mail. It took me 21 months to get a hearing date. I had my one hour in court, with my representative. Some other folks that work for the court were in there too ( one guy, I think, was in there trying to determine if I could work the same kind of job that I had previously worked at. Well, the answer to that was no). The judge decided in my favor right there before I left the room. I started to cry because I was so relieved. Then when myself and my representative left the courtroom he informed me that I was getting back-dated settlement back to 2 years and that I would already qualify for Medicare. I sobbed all the way home during my cab ride. My sister had been supporting  me for about 9 months and I had no health insurance at the time of the court decision. I think my case is supposed to be reviewed every three years. My case was not only about my physical health, but also about  my mental health. I think it was my Ulcerative Colitis and my mental health issues that won my case, but I am just speculating. I wish you the best of luck, but don't give up. It is a crazy process. Don't stop appealing.


 Oh, I don't plan on it, I'm actually pissed, because I know I am disabled, all the doctors say I am as well and even theres gave me a favorable report ( Binder and Binder tells you not to see the states doctor at all } oddly enough, I first started out with Binder, but they had me doing all the leg work, and even missed a date, which caused me a denial. I switched to United after that, and I haven't had to do anything, they do absolutely everything. They also advised me to see the state doctor, and he gave me a favorable review ( favorable for me, not the state, though his report does gloss over stuff more than my primary ). United got my case on the appeal of Binders denial, I really thought it was a done deal until I got the second denial, now its and appeal of and appeal, if you understand that.

 Even if this second appeal fails, United already said they will immediately refile, and this time my case will only be stronger. There was a lot I didn't know going into the process, like being a dumbass, I answered my questions as best case, my lawyer has already told me that was a no, no. You always fill them out worse case, assume the worse because there's almost no chance it will be best case anyways.  

 Even with that, I was one "job" away from getting it on the spot, for some reason they think I can get that job I doubt exists, never mind the fact, I couldn't hold it if it did. Like my lawyer say's to me, its not a matter of if, its a matter of when. Just pissed it has already taken this long, and there's a chance I may have to start over. Even if I do, my lawyer said it will go much faster that time around if it comes to that. Its just frustrating. If I didn't have my 65 year old mother around, I'd literally be on the street.

 I'm glad you had a good experience with Binder, but I did not. I am very happy with United though.


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## Robrich

nogutsnoglory said:


> I'll have to ask this woman what she was talking about than. It doesn't make sense to me either. I know with medical malpractice you have 3 years but I hope that's not with medicare or social security.


Those things have nothing to do with Medicaid, Obama care
Medicaid is income based, if you make less than a certain amount you qualify period!
You should apply ASAP as it can take months for the paperwork to get processed. Here in ca it takes 6 months. Then you get 100%coverage but restricted care docs etc.
If you don't qualify based on income you can buy a health ins. policy from any of the local healthcare providers based on the life event of the cobra ending. I just did that very thing no problem.
Obama care with the subsidy not sure but you may have to wait for the next open enrollment.
Btw the policy I  bought was better and cheaper than the cobra one.
Go for it and good luck


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## Ann Morgan

juggy: Thank you for sharing your story and I am glad you found representation that is

working out well for you. I think I saw a "state" doctor too. I saw a doctor for my

 physical disabilities. I remember seeing him for only 15 minutes !  Then I

 saw some folks that assessed my mental health. THAT evaluation took the entire day. I

 was so exhausted after all of questions they kept asking me.  Yeah, you have to always 

present the worst case scenario when dealing with the courts.  When I had my

hearing before the SSD judge I spent an hour before my hearing 

with my representative going over 

my case and what would happen in the courtroom. I spoke very little in the courtroom.

I did pretty well when the judge brought up something that I did not think she would 

bring up. Her question caught me off guard, but because my representative had 

a meeting with me before I went into the courtroom I knew exactly how I should answer

her question.  Yeah, I think the same as you.....I KNOW I am disabled. But one of the 

factors in my case was my mental illness. I had a major mental breakdown in 2007

and I was hospitalized three times in three months. My life only went downhill from there. 

I went back to work after a 5 month leave of absence from my job due to my breakdown.

When I returned to work I had no ability to focus or concentrate. I also forgot how to do 

my job. I was basically doing entry level work when I returned to my job at the bank and 

I had worked there for over 20 years at that time. What a mess. So guess who was 

chosen to get let go from her job due to "workforce reduction" in 2009......ME, of course

( the sick one ).  Keep on being pissed off, that way you won't be giving up - - -you will 

be fighting the fight until the end !


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## afidz

Well. I lost. 
I'm on my phone so much of the details will be left out. But basically the judges ENTIRE opinion was in my favor. Everything was spelled out plain as day.  My doctors statements,  my medical records,  even his expert witness was in my favor.  
He disregarded his expert witness (then why bother hiring one? ??) And said that his decision was unfavorable because I have insurance.  No joke. I read it out loud to Jennifer. She can vouche that it said that.
So right now,  I'm getting through the weekend. I'm going to start looking into a new lawyer on Monday.  I am at a loss as to what I should feel right now.  But let down is a big word right now


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## nogutsnoglory

That's ridiculous Afidz,  I'm sorry to hear that. So, only people who are most unfortunate should be eligible? There are people on insurance who can't afford it but can't afford not to be covered. Sigh.


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## afidz

I've NEVER heard of that. So im supposed to be completely helpless before they approve me? My health insurance isn't padding myliving expenses for fucks sake!


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## Kit

so Sorry Afidz!  Everyone says the first try gets denied.  Are you trying for SSD or SSDI?  I hope the new lawyer can help.  Hang in there!


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## Write2bheard

I used Heard&Smith. I never saw a judge or had a hearing. I was approved the first time. Don't know if it was because of my age (60) or because they specialize in Crohn's. They are on the web. Try them.


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## Polaris

Write2bheard said:


> I used Heard&Smith. I never saw a judge or had a hearing. I was approved the first time. Don't know if it was because of my age (60) or because they specialize in Crohn's. They are on the web. Try them.


Was this for SSI or SSDI?


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## Write2bheard

SSDI.


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## afidz

I'm going to hire a local lawyer, but thanks. 
This will be my 3rd appeal


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## Write2bheard

Good luck. I am still fighting Prudential for my long term disability. You would think they'd give it up since social security has a much higher bar and now they can reduce how much they pay by what I get from social security. But they are still fighting it.


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## Ann Morgan

dear afdiz: Did you have to pay these lawyers any kind of fees even if you lost your case ?  I thought these Social Security Disability lawyers would not even take a case unless it was solid and they knew they could win it ?  I don't really know how it all works. You certainly deserve to have a favorable verdict. Yeah, my lawyers suggested going to an independent doctor guy ( one they suggested of course ) to be interviewed and examined ( of course for a large fee ).  Even though I did not think this doctor they recommended would help me win my case, I paid the fee and went to see him anyhow....just in case it would help my case. At the time I had to borrow the money from my mom and then pay he back.


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## afidz

I do have a very solid case,  if you hadn't read that it was "unfavorable" and you read the rest of the report you would think that I won.  It days in several different places on my report that I can't work.  I don't owe my lawyer any money because I didn't win


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## pink&green

:ghug:afidz, definitely hire a local attorney continue to strengthen you disability claim list new medication(side effects)procedures, Crohn's related ailments etc....Hubby is at the reconsideration stage we expect a decision within the next 2 weeks they are waiting on GI last visit & CRS notes.


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## javanov

God awful reading these stories, such unfair systems in our amazing 'free' countries'

Our ESA (employment and support allowance) system has a supposedly 'fair' WCA (work capability assesment) where they make you do ****ing star jumps and see how far you can walk unaided, then award you points for these things. People have been denied it when they've had terminal cancer or worse, nevermind major bowel disorders.

The only advice I can give is tat if you know what you are suffering from is fair game for you to claim these benefits, project it onto your tests and MAKE them believe that you deserve it. I know that sounds daft but if you have any doubt, they will probably pick up on it and you won't be treated fairly


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## Ann Morgan

Yeah, it's a b*tch when you KNOW for a fact that you are really, really sick and that you cannot work, but you cannot convince the courts of this fact.  How many tests does a person have to have and how many doctors notes do the courts have to read before they are convinced. I know that there are some folks out there who fake a disability and then they get the benefits and ruin it for the rest of us who ARE sick and know we cannot work. 

I am on disability for physical and mental health reasons. If they think that I can work while running to the restroom all day long and also suffering from a mental illness that makes it almost impossible for me to complete tasks, focus, concentrate and remember anything well they are the ones that are "nuts" ! :ack: I have anxiety when I go to the grocery store or have to make appointments, so no one is going to tell me that I can "multi-task" and work 40hours a week with the way my health is.  I have depression too, so my motivation is almost at a stand still. It takes all of my physical and emotional energy to go to all of these doctors right now and still maintain my sanity ! I am just tired all of the time.


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## Polaris

I'm trying to decide if I'm "sick enough" to apply for SSDI. Did any of you go through this before you applied? 

I haven't had to have surgery yet (although I'm heading in that direction since my body doesn't respond to meds; Humira is failing after a year, Remicade before that and every other med), and the only complication recognized by SSDI would be anemia, although not true anemia, just very low ferritin and saturation/iron levels, with iron infusions. I haven't lost 10% of my body weight. I don't have fistulas or abscesses. Severe fatigue, joint pain, depression, and anxiety don't seem to matter. You start to feel like you're creating this in your head and maybe you're not really sick.


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## Ann Morgan

stelarjess: 

It probably wouldn't cost you anything to just consult with a law firm to see if they would take your case. I have not had surgery either. According to my law firm,medical records were the key to winning a case. I had been seeing A LOT of different doctors at the time that I filed again and I signed medical releases for all of them ( physical health doctors and psychiatric doctors/hospitals ). I have Ulcerative Colitis, but as we all know that this disease just does not affect one part of our body - - if effects every part of our body and every day of our life ( physically AND mentally ). Don't give up. Lot's of folks here have some great advice and insight. PS: I have fatigue, anxiety, depression and joint pain too. I have seen ten different kinds of doctors since March 2014. I haven't worked since 2009. 

I first applied for SSD online all by myself. I was denied shortly after that. Then I gave
up and did not appeal. I figured that was the end of it. I gave up. 

Then in 2011 I applied again, but through a law firm. 
I knew I was sick, I knew I couldn't work any longer. 
When I did apply for SSD through a law firm, they collected tons of medical records from all of my doctors. It took me 21 months to get a hearing in front of a judge ( although some folks here on this site never even had a hearing and they got approved ). The judge decided in my favor right in the courtroom. Not only that, but I received back-dated benefits  and I qualified for Medicare right away. I started collecting benefits in January 2013.  Everyone has a different story with different results. 

Don't give up.


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## Polaris

Ann Morgan said:


> stelarjess:
> 
> It probably wouldn't cost you anything to just consult with a law firm to see if they would take your case. I have not had surgery either. According to my law firm,medical records were the key to winning a case. I had been seeing A LOT of different doctors at the time that I filed again and I signed medical releases for all of them ( physical health doctors and psychiatric doctors/hospitals ). I have Ulcerative Colitis, but as we all know that this disease just does not affect one part of our body - - if effects every part of our body and every day of our life ( physically AND mentally ). Don't give up. Lot's of folks here have some great advice and insight. PS: I have fatigue, anxiety, depression and joint pain too. I have seen ten different kinds of doctors since March 2014. I haven't worked since 2009.
> 
> I first applied for SSD online all by myself. I was denied shortly after that. Then I gave
> up and did not appeal. I figured that was the end of it. I gave up.
> 
> Then in 2011 I applied again, but through a law firm.
> I knew I was sick, I knew I couldn't work any longer.
> When I did apply for SSD through a law firm, they collected tons of medical records from all of my doctors. It took me 21 months to get a hearing in front of a judge ( although some folks here on this site never even had a hearing and they got approved ). The judge decided in my favor right in the courtroom. Not only that, but I received back-dated benefits  and I qualified for Medicare right away. I started collecting benefits in January 2013.  Everyone has a different story with different results.
> 
> Don't give up.


Thank you Ann, this gave me a lot of hope. I've decided to consult with a lawyer before I do anything else.


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## Polaris

I'm SO relieved. I applied for state disability (CA) last week, and it's already been approved! My doctor put me off work until December, although hopefully I can return to my job before then. I was not expecting this to go through so quickly.. I'm beyond thankful.


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## sarahh5397

question for people in the U.S. who have applied for disability or social security benefits I have my medical evaluation in a week what exactly should i expect from seeing this doctor? most of the diagnosis is internal and if meds are working and I have my humira shot the day before does that mean blood work will come back normal? obviously that wouldn't help my case any advice or personal experiences would help thanks


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## DJW

Stelarjess, that's great to hear.


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## juggys69

sarahh5397 said:


> question for people in the U.S. who have applied for disability or social security benefits I have my medical evaluation in a week what exactly should i expect from seeing this doctor? most of the diagnosis is internal and if meds are working and I have my humira shot the day before does that mean blood work will come back normal? obviously that wouldn't help my case any advice or personal experiences would help thanks


 You mean the evaluation done by a state doctor ? Stress to him or her how you feel and do on your worse days, and then rate how you feel on this particular day that you are seeing him/her. Thats really all you can do during the state exam, sounds sadistic, but hope you are having a bad day on the day of your exam.


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## sarahh5397

kind of what I was thinking too was sort of hoping I'm having a really bad day when I go see him! lol


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## Ann Morgan

sarahh5397 said:


> question for people in the U.S. who have applied for disability or social security benefits I have my medical evaluation in a week what exactly should i expect from seeing this doctor? most of the diagnosis is internal and if meds are working and I have my humira shot the day before does that mean blood work will come back normal? obviously that wouldn't help my case any advice or personal experiences would help thanks



My advice would be to never lie. You just have to be

careful about how you answer the questions.  A few

years back my physical exam took about 15 minutes.

How can they come to a conclusion about anything in

that amount of time ?  I also have mental health issues

and THAT evaluation took all day long !  I don't get it.

I also had another evaluation done, recommended but not

required by my attorney, by a "private" doctor that works

with my attorney. Basically he was a somewhat retired,

doctor that spent an acceptable amount of time on my

evaluation and he seemed to be asking me all of the

right questions ( for my physical and mental health issues ).

I DID pay him a good amount of money. I am not sure

how much his contribution made to the judges decision

but it was my decision to spend the money just in case

his evaluation DID have some leverage. The most important

part is that I won my case.


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## Ann Morgan

Sarah: I believe what won my case were all of the medical records that my attorney collected from ALL of my doctors. I mean ALL of my doctors. All of my doctors treating me for physical illnesses and mental health issues too ( I suffer from Major Depressive Disorder ). They also obtained hospital records. I think they only went back three years, they did not care about the records that were older than that.


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## jazzygirl52

Hi all...

I have had Colitis/Crohns since a teenager (now 61).  I was on Pentasa for years and years and occassional prednisone.  Diagnosed with colon cancer large intestine in 2011 and a wonderful dr at Brigham Womens did the surgery with no need for external ostomy bag.

I had to leave high paying, high stress jobs, and relocated to MA from CA at the same time.

After working and earning very little money, and having restrictions on how far I could be from bathroom etc, I finally stopped working and went on UE and finally am qualified for Disability in MA.  They dont pay for first 5 months but now am on it, have MassHealth (medicaid), and yes, did apply for MA version of food stamps.  I am not working, but getting treatment now for Crohns and also am limited to no roughage, no dairy, gluten free etc.  

tapering off Entocort and starting Remicade in November.  But after paying $500 a month for Cobra for two years, the Disability Insurance has been a blessing as well as Mass Health for saving that money and not drawing on my dwindling cash reserves.

The doctors have to all send in data and you cant hardly ever get your case worker via phone, but if you have patience, apparently it works.

UPDATE:  Insurance changed to Humira which I started in December.  Tummy feels a lot better.


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## pink&green

Hubby just got approved I checked our bank account this morning and his back pay was deposited in today. We have not received his letter but I did go on to SSA.gov and printed his benefit letter. I did everything myself no lawyer I just documented everything made sure the Dr. wrote down everything that my hubby said. I also sent in a copy of my FMLA papers to the SSD examiner to show how I have to leave to take car of him and sometimes work from home when his flares are really bad.


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## darubo

Hello,

I'm new to this group and need some guidance, encouragement, etc.

I'm 52, female, and live in East Texas.  I was finally diagnosed in 2011 with Crohn's disease and had a bowel resection in 2012.  I couldn't work for 3 months, but did go back to work.

In addition to Crohn's, I have several other illnesses/conditions, including severe osteoarthritis in my knees, back and feet/ankles.  

I started feeling nauseous every morning a few months after the bowel resection, and none of the tests the doctors ordered showed that anything was wrong; all came back as "normal"...I had to start using a wheelchair to get around at work in September 2013.

By March of this year, 2014, I just couldn't force myself to go to work any more; I just felt too sick.  My employer was also trying to find a way to fire me, and I felt like they forced my hand, so to speak.

I was on Short Term Disability until early June 2014, and when my FMLA was exhausted, the company that administers the STD at my job denied my STD claim.  They had been approving it and paying it almost 3 months, and nothing about my conditions had changed; I was actually feeling worse.

So I've had no income since June, and had to sell my house and move in with my sister who lives in the small East TX town I grew up in.  

I had knee replacement surgery 8/19/14 and am still recovering from that, plus I still have daily nausea that is extremely debilitating.  I filed for Social Security Disability in March, right after I went out on STD.  I got a letter from SS denying my claim last week.  The letter says my conditions are not severe enough to keep me from performing my daily work duties.

My employer terminated me 9/16/14 because I couldn't go back to work.  I contacted an attorney for help with the SS Disability denial and asked if I should file for unemployment, and he said yes.  I filed for unemployment.  One of the questions asked when an unemployed person requests unemployment is "do you certify you are mentally and physically able to work?"  I answered "yes" because I didn't know what else to do; I have no money and no income, and am too sick to work.

A TEC employee called me Friday to tell me my unemployment compensation request would not be considered until my doctor sent a fax to them releasing me to work.  It's a Catch-22 situation...

I don't know what to do?  What do I do for money while I appeal the SS Disability denial?  I'm going to lose my car because I don't have the money to pay the monthly payment!  My sister is providing me with a roof over my head, but I don't know what I'm going to do for healthcare, because COBRA is $655/month!

I need help -- does anyone in this group have any suggestions about what I can do for healthcare?  I have several maintenance medications I take daily, and I can't just stop taking them!

I can see how people become homeless and lose their minds -- it shouldn't be this way; this is America!

I would really appreciate any and all comments, suggestions, information, etc.  I'm feeling really hopeless about my situation...

Thank you,

Dana in Lufkin, TX
:sign0144:


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## darubo

Please subscribe me to the Disability/Unemployment/Financial Difficulties Support Group.

Thank you.


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## jazzygirl52

Sorry darubo....

The system is so hard.  I too struggled with this work vs disability after years of colitis/crohns and a colon cancer surgery in 2011.  But earlier this year I took a new job that was high stress and long hours.  I could not properly have time to eat/ go to bathroom/ relax enough to go to bathroom in a shared bathroom, etc that it stressed me out.  I had a huge anxiety attack that made me dizzy and gave me horrible headaches on top of tummy woes.

I applied for unemployment immediately and then was convinced I should apply for long term disability --I put the claim in for stress/colon cancer and bathroom needs and variety of other physical issues.  

Technically you cant apply for unemployment and disability at the same time.. one says you are okay to work and one says you arent.  But I did cause like you, I needed income.

It took 5 months to get disability to approve me.  I also went on Mass Health's version of medicaid vs my $500 month cobra.  And I should start getting my disability payments end of October.

I had all of my doctors send in reports of medical issues they were treating me for, and I went to a therapist and emphasized the stress and the lack of control of bathroom needs.

And I was persistent.  It worked.  I would suggest you try again with a lawyer and  in the mean time apply for medicaid health benefits and food stamps...and tell your doctor that you need a note saying you cannot work full time, and have physical disabilities that require you to have time and access for bathroom functions....

Check with the state, they must have financial resources like welfare.

So sorry you are going thru this.


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## Ann Morgan

jazzy: My job was a high stress job too. I have not worked since 2009. I also had the Cobra Insurance after being let go from my job in 2009 due to "workforce reduction" because of the poor economy. I did not pay as much as $500.00, but the cost was a lot for me to pay.


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## Ann Morgan

pink&green said:


> Hubby just got approved I checked our bank account this morning and his back pay was deposited in today. We have not received his letter but I did go on to SSA.gov and printed his benefit letter. I did everything myself no lawyer I just documented everything made sure the Dr. wrote down everything that my hubby said. I also sent in a copy of my FMLA papers to the SSD examiner to show how I have to leave to take car of him and sometimes work from home when his flares are really bad.


I am so happy for you and your husband !  Good Job !  It was smart of you to print out his benefit letter. I actually carry my letter around in my purse. I have a copy of the letter at home. I received a letter in the mail.


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## Ann Morgan

darubo: I have gone through so many of the same things that you are going through now !  The Cobra Insurance. The Unemployment Benefits. Short Term Disability at my job. Applying for SSD on my own the first time around and I got denied, I did not appeal and I gave up. Finally I tried again and I got an attorney and I won my case. I got let go from my job due to "workforce reduction" in 2009 because the economy was bad. But I did have physical and mental health issues at that time that were severely affecting my job performance. Of course they picked me to get let go, I was the "sick one". After my Severance and Retirement money was gone, I applied for Unemployment Benefits and after the initial Benefits ran out I got an extension. So, it was 2012 and I had no Unemployment Benefits and no Health Insurance. I was still waiting for my SSD hearing before a judge at this time. I thought I was going to be homeless. Since I had no health insurance I had to discontinue taking my psychiatric medications ( I had several prescriptions ). I only kept taking the bare essentials as far as medications. My sister saved me from being homeless. She paid all of my bills ( the bare minimum ) for probably nine months. She gave me the money, I did not have to pay it back. It took me 21 months to get my SSD hearing and I won. I started to collect SSD in January 2013. I started to get Medicare right away because I got backdated settlement pay. But I screwed up and I did not apply for the Medicare Prescription Insurance in 2013. So, I had to pay full price for all of my prescriptions. How stupid of me, but I did not know how the "system" worked. I now have AARP Medicare Complete insured through United Health Care and I DO have prescription insurance. Since I did not take my psychiatric medications for a year, of course I ended up in the psychiatric hospital one year after going off of my medications. I had been isolated for an entire year and severely depressed. When I applied for Unemployment I actually felt like I could somehow qualify for some kind of job somewhere, but not the same type of job that I was let go from. I thought I may find something easier and less stressful, but I didn't. Jobs were hard to find, and most jobs wanted a person to multi-task and to be able to use every Microsoft program ever made. My advice is to get a reputable attorney. Since I won my case I DID have to pay the law firm a fee. I was diagnosed with Ulcerative Colitis in 2006 but I had had symptoms since 1997. I also have many other illnesses other than the Ulcerative Colitis. Some are physical problems and some are mental problems. I had no health insurance for the entire year of 2012. I was also on Short Term Disability from my job in 2007 for five months. I don't know what kind of services that your city or state could provide for you. Jazzy has some great advice and some great insight. There ARE services out there, it is just hard to find them. Take Care and Keep Writing.


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## Ann Morgan

Jazzy: I used to have panic attacks at work all of the time before I had a breakdown and ended up in the hospital in 2007. I did not know what a panic attack was at all at the time. I just felt "icky" and I had migraines and my balance felt "off". One time my boss even called the fire department people to come to check me out at work !  How embarrassing. They checked me out and I was okay, of course, physically. I was a "frequent flier" at the Emergency Room because of the panic attacks.


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## pink&green

Ann do you know when your CDR is scheduled? We still have not received hubby benefit packet from what I read the his CDR date she be in that packet I also read that it could take 1-2 weeks after the back has been deposited to receive the packet.


----------



## Ann Morgan

dear pink&green: I received some very basic information from the Social Security

 Disability people after my case was won. Somewhere in this information I believe I read

 that some of the cases are reviewed every three years and some are reviewed every

 seven years. I believe it said my case was going to be reviewed every three years

 because there could be a possibility that I could return to work at some kind

 of a job. I did not save that SSD booklet or the pamphlet ( stupid me ! ).

 Of course I also received my letter from the Social Security Disability 

 people about my case being

 won and the settlement amount and more details like that. I keep this letter in my purse

 just in case someone may ask for a copy of it.

 I know so little about how the system works. I wish I would have saved my booklet

 and my pamphlet. I suffer from anxiety, so I am always worried that they will

 review my case and say I can go back to work at a job. My previous job included

 dealing with millions of dollars, dealing with daily mandatory deadlines, 

 internal accounting-type responsibilities, cross-training, multi-tasking, rotating

 job duties. I worked there for 24 years. 

 Keep In Touch so that we know what is going on.


----------



## pink&green

Thanks Ann, I'm shocked that he has such a quick CDR from what I read 3-5 is the norm.


----------



## ChrisCrohn's

I get ssd,applied for ssi also.i was told i earn  $20 too much to qualify for both!my son turns 18 soon,so less $ for me.i got a notice from ssd stating i am 145% below poverty level.i am deeply concerned about my future.as it is now,i can't even afford co pays or dr visits anymore.
I feel helpless


----------



## Ann Morgan

My SSD case is supposed to be reviewed every three years. I just started collecting regular monthly SSD benefits in January 2013, but I received some back-dated settlement pay also ( a lump sum ). So, will my case be reviewed three years from January 2013 or will my case be reviewed based on the date of the back-dated settlement pay ? I have some mental health issues that were included in my case, so my case alone was not won based on JUST the Ulcerative Colitis chronic diarrhea issues. Well, I recently saw a new GI doctor and had a colonoscopy, the colonoscopy came back normal. I am afraid that the reviewers will see the new colonoscopy results and will come to the conclusion that I am "cured". I had terrible diarrhea for 17 years until May of this year when I started to get bad constipation. Without my Questran I would not be able to leave my apartment. I am still taking the Questran, but I am taking one packet a day instead of two. And I am still taking the rest of my Lialda pills. I already have terrible anxiety and I worry so much about them taking my benefits away. This may sound terrible, but I would rather be dead than be homeless. I don't want to be homeless. 

Thanks for listening.


----------



## ChrisCrohn's

Hi Ann,reviews  are based on the date of your first payment.the lump sum is seperate a


----------



## nogutsnoglory

I'm trying to keep my pride and not file for disability but it's too long and I'm not healthier. 

How does the SSA define date of disability? Is it from the day I apply, the day I'm accepted? I've had crohns for years but really bad in the last 4 so not sure how to file. Also, can I list multiple conditions?


----------



## Ali29

I would suggest finding a local SSDI Attorney.  It is a nightmare to file, along with lots of paperwork and as you know most are denied initially.  The whole process causes lots of stress.  I'm not positive but I think the date of disability is the date after your last date worked, I think that is what my attorney said.  Yes, all disabling conditions are listed.

Good luck and hopefully you can get approved quickly!!!!!


----------



## jazzygirl52

nogutsnoglory said:


> I'm trying to keep my pride and not file for disability but it's too long and I'm not healthier.
> 
> How does the SSA define date of disability? Is it from the day I apply, the day I'm accepted? I've had crohns for years but really bad in the last 4 so not sure how to file. Also, can I list multiple conditions?




_Hi all... I applied for disability and they approve you (if they approve you) with payments to start coverage (may be retroactive) 5 months after filing.   Then the first payment was a month later ... so they determined my benefits start in October, with payment being November 26th and 26th of the months following....  

I listed major stress that created havoc with my med schedule, my stomach, inability to wait when urge strikes, panic attacks that disabled me physically at my job and lack of adequate time to use the restroom in the high stress job. Also past injuries with my back ,shoulder, knee that prevented me from a lot of jobs...( list any and all that you have, and provide a list of doctors, they do check w each doctor to verify your condition/diagnosis/therapy).

I am in MA and qualfiied prior to disability for MASS HEALTH which waived copays, had $3.25 prescriptions , etc.  Not sure if there is anything like that in other states.  

GOOD LUCK!

_


----------



## Ann Morgan

Hi Noguts:
I would recommend getting an attorney, that is what worked for me. Although I have heard about people applying on their own and winning their case the first time around. But also have heard of other folks that had to appeal more than once.


----------



## Jennifer

nogutsnoglory said:


> I'm trying to keep my pride and not file for disability but it's too long and I'm not healthier.
> 
> How does the SSA define date of disability? Is it from the day I apply, the day I'm accepted? I've had crohns for years but really bad in the last 4 so not sure how to file. Also, can I list multiple conditions?


The day you apply. I'd apply as soon as possible if you're thinking about it because it can take a very long time to get approved. You can always stop the process if you're able to work without difficulty again. Yes you can list multiple conditions.


----------



## nogutsnoglory

I just am afraid to bother my doctors if I apply and then can work and then need to apply again.


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## Jennifer

It's not a bother to your doctors at all.


----------



## nogutsnoglory

Ok I'm gonna do it. I haven't been able to work in a long time and I'm not getting better. I feel like what life will I have if I accept this and I'm on disability but I need to work within my means. 

Am I forced to accept medicaid until I get medicare or can I keep my insurance that my parents are helping pay for? I want to keep my insurance if possible.


----------



## UnXmas

Just thought I'd repost these two posts I made here as it probably would have been better to post them in this thread in the first place:



> I've read a lot of unhappy stories about people having to fight to get approved for various disability benefits. I'm not sure this will apply to many on this forum, as IBD was not the reason for my application and I wouldn't have thought many would qualify for this with IBD alone, but I recently got reassessed for PIP (in the UK, it's non-means-tested payment for those who need help getting around and/or help with personal care).
> 
> The nurse who assessed me could not have been lovlier. The complete opposite of the horror stories you hear - she literally told me I was downplaying my condition and that I should say I need more help (I didn't think I was downplaying anything, just trying to be honest - I think I'm more capable than my medical records suggest, so she thought I must be downplaying things). She's not the one making the decision though, and I won't know the result for a while yet, but since it's natural that people go online to vent about bad experiences, where assessors give them a hard time or don't seem to understand people's difficulties, I thought I'd share something a bit more encouraging.





> Well I got approved for the full amount, so being honest paid off.
> 
> Btw, if anyone in Britain on this forum thinks they may be entitled to PIP, I'm happy to answer questions about it, having just gone through it, I know a bit about what qualifies, what the assessments involve, etc. If you're relying on other people due to health issues - to help you travel, get shopping, at work, around the house, with dressing and washing, etc. for an extended period of time (so not just for a few weeks while you recover from surgery or something, but for months), or if you require equipment - e.g. aids to help you walk or supports to get you in and out of the shower - you may be entitled. It includes psychological issues too, such as needing support to go out because of bad anxiety.


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## jazzygirl52

NoGuts--- doctors are not bothered by disability certification 
- they have staff that work on that - take care of your disability claim start and furnish dr names and contact info


----------



## nogutsnoglory

Thanks I will, I just want to make sure I can keep my insurance and not go on medicaid or Medicare.


----------



## DougUte

nogutsnoglory said:


> Thanks I will, I just want to make sure I can keep my insurance and not go on medicaid or Medicare.


When my wife has been on disability we were able to keep her on my insurance through my work. She was also on Medicare as a secondary insurance. I don't think your case would be any different. You could call them and ask.


----------



## nogutsnoglory

Should I list every doctor I visited since becoming disabled? I'm afraid if I put too many it will delay the process since they will need records from all of them. I'm only listing ones related to my issues. 

Do I list every condition and symptom? For example I have migraines but never went to a dr for it.


----------



## Ann Morgan

nogutsnoglory said:


> Should I list every doctor I visited since becoming disabled? I'm afraid if I put too many it will delay the process since they will need records from all of them. I'm only listing ones related to my issues.
> 
> Do I list every condition and symptom? For example I have migraines but never went to a dr for it.


This is why it is sometimes a good idea to seek representation from an attorney when applying for diability benefits. I did not have to do anything except provide my law firm with the name, address, phone number of all of my doctors that I had seen during the the past three years ( any doctor that was treating me for ANY of my symptoms related to my Ulcerative Colitis and my Major Depressive Disorder. I had seen MANY doctors during those three years. ) The judge determined that I would not be able to work at a job ( equivalent to the one I had been let go from due to "workforce reduction.) 

My case gets reviewed next year. I am very scared they will take my benefits away. I went to a new GI and had a colonoscopy and he said it was "normal". He even said to discontinue my colon medication. He is an idiot. I DID have some major changes in my UC in 2014, I had constipation instead of diarrhea during part of 2014. Well, now my diarrhea is back 100%, but I have no documentation of the changes. I have had a hospitalization for my mental illness since I won my case, so I think the documentation for my mental health is complete.  Thanks for listening.


----------



## UnXmas

Ann Morgan said:


> My case gets reviewed next year. I am very scared they will take my benefits away. I went to a new GI and had a colonoscopy and he said it was "normal". He even said to discontinue my colon medication. He is an idiot. I DID have some major changes in my UC in 2014, I had constipation instead of diarrhea during part of 2014. Well, now my diarrhea is back 100%, but I have no documentation of the changes. I have had a hospitalization for my mental illness since I won my case, so I think the documentation for my mental health is complete.  Thanks for listening.


What was the medication your doctor wanted you to stop? If tests showed no sign of UC, he wouldn't have been able to keep you on UC medication, as he'd be putting you at risk of the side effects, which with many meds can even be quite dangerous, without being able to claim the potential benefits of the med outweighed them. If he'd done adequate tests and found nothing that could justify prescribing you the medication, his hands would have been tied. Did he look for other causes of diarrhoea after the colonoscopy?


----------



## nogutsnoglory

I'm not seeking a lawyer at this time. 

Do I have to send complete records from every dr I listed or can I just send what I find is vital? 

Do I just mail it to SSA, do I include some cover letter stating it's partial records?

This process is so confusing and stressful.


----------



## Brear

I just wondered if there was anyone from the UK who had experience of what someone with Crohns might be entitled to, if anything, to help? 

  I am having to take a 50% cut to my wage at the minute, every day I am absent my monthly wage packet is taking a serious hit and after 50 days that will then go down to 0% pay if I am still absent. I am getting very worried about mortgage payments whilst I wait for my operation and during recovery time. I'm desperate to get back into work but at the minute I can't be running out of the classroom mid-lesson to go to the toilet


----------



## DougUte

nogutsnoglory said:


> I'm not seeking a lawyer at this time.
> 
> Do I have to send complete records from every dr I listed or can I just send what I find is vital?
> 
> Do I just mail it to SSA, do I include some cover letter stating it's partial records?
> 
> This process is so confusing and stressful.


Hi NGNG. 

Do you have the packet from Social Security with all the forms that need to be filled out? I am not sure where you are at in the process. You can start your disability claim at http://www.ssa.gov/dibplan/dapply.htm. 

Once you apply, Social Security will send you a packet with the forms that need to be completed. In those forms are copies of releases you can fill out for each doctor. You send the releases to Social Security and they will request medical records from your doctors, clinics, hospitals, etc.. That is how it worked when my wife was approved. I would send a release form for every doctor, clinic, etc.. you have been seen by for the time period they are asking for. The more documentation supporting your disability the better off you will be. 

We have been through this twice with my wife. I also have a brother with Ausberger's Syndrome whom I helped apply for disability. I have been through the application process a couple of times with those two. I am willing to give advice if needed.


----------



## nogutsnoglory

Thanks Doug. I applied online a few days ago. I didn't know I was getting a packet so that's helpful. 

I thought my e-signature was permission for them to seek medical records from doctors. 

I'm debating whether to ask doctors to write letters on my behalf or maybe I'll only do that if I need to appeal.


----------



## DougUte

Have them write the letters. Social Security weighs letters from doctors very heavily in these determinations.


----------



## nogutsnoglory

How much should the Dr charge for the letter?


----------



## DougUte

nogutsnoglory said:


> How much should the Dr charge for the letter?


I've never seen a doctor charge for that so I really don't know.


----------



## durwardian

nogutsnoglory said:


> I'm not seeking a lawyer at this time.
> 
> Do I have to send complete records from every dr I listed or can I just send what I find is vital?
> 
> Do I just mail it to SSA, do I include some cover letter stating it's partial records?
> 
> This process is so confusing and stressful.


They think they know what is best to look at, and complain about withholding stuff if you don't just give them access to your records. A lawyer usually won't charge you unless you win. The process is then so much easier. But, I tried twice without one, and didn't get anything. Then with one it went through really fast.

So, you send them everything, and then they want to be able to talk to your doctors anyway. But it is all part of the frustrating process they put people thru. They claim too many people are abusing it, but I don't know how that would be possible when it would be easier for me to try and find a door to a parallel universe.

And yes, if it is partial, say so. They will drill you over and over with trick questions. And try like the dickens to make you look like a lazy complainer. It is horrifying. I finally started asking to speak to a supervisor. Asked them why they were calling me when they had everything they needed? There shouldn't be any questions at this point. They may have you go to court. The problems with Crohn's, are that the rule book says 6 continuous months where you cannot work due to your disabiliity. Flares can last that long, and we go to work so we can pay the rent, no matter how much pain we are in, or how much torture it is. If you do, you are disqualified. If you don't, you go broke and end up on the street waiting for social security to pull it's head out of the sand and be real about it.
I, for one, would dismantle social security the way it is today. We are sharing the social security money with people who come from other countries and never have participated, like it is some sort of welfare for everyone. I think we need separate piles of money to deal with the costs of things that they keep throwing into the social security pile. In addition, I don't think Social Security should be able to second guess our doctors. If more than three doctors say I'm sick and can't work, it should be done, and fly through. The people on the other end are not even doctors until maybe the 4th or 5th stage. In the beginning, it is simply people checking to see if you meet all of the qualifications, and that all of the paperwork is together, and that you are who you say you are, and that you have worked in the jobs you worked in, and if any of those jobs can be done from the seat of the toilet.. it is insane.
And to top it all off, once you do qualify, they give you less than half of the known bottom of the poverty income, and can still deduct from that for medical bills owed and other government things. So you can be left with $700/month for everything. HUD housing is 2 to 5 years waiting list almost everywhere, so you try and figure out how to survive until cheaper rent kicks in. If you have anything of value, none of the help agencies will assist you until that is gone or sold. I can't see why anyone would want to try really hard to get into social security, unless it is the last resort, like in my case. At least something to try and survive on. But it doesn't work, front to back I have to ask people for help to get by.
Anyway, good luck with the application. Let me know if you run into snags I can help you with.


----------



## durwardian

The doctor's don't like to write the letters, but they do, and it is no charge. There are also forms for them to fill out, best if you do it with them or it may never get done.


----------



## durwardian

By the way, the more ER visits you have in the last year, the better. The more incapable you are of performing tasks that have to do with your last jobs, the better. They will try to force that issue if at all possible. I got a "back to work" ticket in the mail before I got my social security. A plan where you can work and it is somehow ok... so they contradict what the requirements are... Government... I figure the back to work is a scam to entrap people,


----------



## durwardian

And, btw, to make it through the SS flaming hoops, I had rheumatology, gastro, psychiatry, immunology and VA, with primary care, physical therapy, home nursing, and pharmacist letters, all explaining how impossible it is for me to maintain any regular employment in my condition. My uncle died a month after he was accepted. It took years with cancer, finally at stage 4 they said yes. So if and when I ever meet the policy and procedure person, I will probably be arrested for my actions.


----------



## nogutsnoglory

It's really tragic how hard it can be and sick people need to work so hard to get what they deserve. There are people abusing the system with stupid things like saying high blood pressure. Yeah, that's a problem but high blood pressure never stopped anyone from working. Shutting yourself and being to weak to sit up is a problem.


----------



## nogutsnoglory

this disability process is making me so anxious but I think the rest is out of my hands. I provided the info, sent my records and the rest will come from docs and hospitals. Now I just need to relax and hope for a positive outcome.


----------



## Ann Morgan

durwardian said:


> And, btw, to make it through the SS flaming hoops, I had rheumatology, gastro, psychiatry, immunology and VA, with primary care, physical therapy, home nursing, and pharmacist letters, all explaining how impossible it is for me to maintain any regular employment in my condition. My uncle died a month after he was accepted. It took years with cancer, finally at stage 4 they said yes. So if and when I ever meet the policy and procedure person, I will probably be arrested for my actions.


I got a lawyer the second time I applied. The first time I applied was online and got denied. I, also, had many, many doctors I was seeing, so my attorneys had me fill out a WHOLE BUNCH of medical release forms for ALL the doctors I was seeing. Medical records are the key to winning your case. I was also going to the ER and in the hospital. I went to court with my lawyer. I did not talk a lot or babble. I answered the questions very honestly but with very short replies. I kept myself composed during my hearing. Unfortunately my life had to go down the toilet by the time I got a hearing and got approved....at that time I was broke, my sister was paying my bills and I had no health insurance. 4 years before all of this I had a good job at a bank for 24 years. My case , I believe, was strongly based on my Ulcerative Colitis and my Major Depressive Disorder. This psychiatric disorder is like being in a prison I can't get out of.

Good Luck to everyone here.


----------



## Ann Morgan

nogutsnoglory said:


> this disability process is making me so anxious but I think the rest is out of my hands. I provided the info, sent my records and the rest will come from docs and hospitals. Now I just need to relax and hope for a positive outcome.


It IS a very stressful process. I hate to say this, but, it took me 21 months before I got a hearing before an SSD judge with my attorney and I.  I almost went totally crazy when my hearing was scheduled in September 2012 and then the day before my court date I got notified that the judge was sick or somethIng. My new hearing date was in January 2013, 4 months later. I still cannot believe I was psychologically strong enough to get through this. I was not on any psychiatric medications because I was broke with no health insurance. I was very unstable. 

I sobbed all the way home in my cab after I got approved in the courtroom by the judge AND my lawyer said I was getting 2 years back-pay and also that I qualified to get Medicare right away. It took so long, but I was seriously blessed by the end of the process.


----------



## nogutsnoglory

Wow that's intense Ann. I thought 1 year back pay was the Max. Is that because a judge ordered more?


----------



## Ann Morgan

nogutsnoglory said:


> Wow that's intense Ann. I thought 1 year back pay was the Max. Is that because a judge ordered more?


I do believe the back-pay decision is up to the judge.


----------



## nogutsnoglory

During the decision making process, does SSDI ever call and ask questions? I just want to be prepared on how to answer. Not sure if they do this kind of thing.


----------



## jazzygirl52

nogutsnoglory said:


> I'm not seeking a lawyer at this time.
> 
> Do I have to send complete records from every dr I listed or can I just send what I find is vital?
> 
> Do I just mail it to SSA, do I include some cover letter stating it's partial records?
> 
> This process is so confusing and stressful.


_ For my disability claim, I listed all doctors and medical conditions.  Figured the more disabled the better.  But stress/nerves/uncontrollable bowel movements, stomach pain, need to access bathrooms were primary.  Job I had most recently at that time was in an old building, in a room with no air circulation, one person bathrooms... 2 on the floor.... pressure to work and not take breaks.. _


----------



## Ann Morgan

Ahhhhhh.

My 3 year SSD review will be next year. Had a new Gastroenterologist last year. Colonoscopy came back NORMAL. Now I worry that SSD will see a NORMAL colonoscopy and want to take away my benefits. I HATE the 2014 Gastroenterologist and will not return to him because he is an idiot and basically just makes his money ( I believe) by doing a lot of colonoscopies. So, if SSD sees those test results it will appear that I am "cured" ?  I DID have some unusual severe constipation issues last summer, but now I am back to my diarrhea ( that I have had since 1997). All the courts care about is the facts as they are on paper. I am going to have to find a new Gastroenterologist THIS year. In the meantime, I am going to see my old Gastroenterologist for just one appointment ( I am paying cash, he is NOT on my new health insurance plan). I trust my old doctor. I don't know if it is unethical to go to old doctor to get his opinion of what is going on with my Ulcerative Colitis after I have seen a NEW doctor. My old doctor is the one who finally properly diagnosed me with Ulcerative Colitis in 2006, after I had already been having terrible colon issues for 9 years! A few years previous to seeing him I had seen an Internal medicine doctor who just did a Lower GI and a Flexible Sigmoidoscopy, but NEVER a colonoscopy.

I also have some mental health issues that were part of the SSD decision in January 2013 when I started to receive my benefits. I have had ER visits and hospitalization for my Major Depressive Disorder/Anxiety since the SSD decision in January 2013. I think my mental health records alone would probably prove in my favor during a review next year ?  Maybe the review people will forget about me ?  Of course, because I am an obsessive worrier, I have worried about my three year review since the day I started receiving SSD benefits !  

So much to worry about !  No wonder my jaw is clenched up right now !  I don't want to be broke and homeless !

Thank you for listening.


----------



## UnXmas

Even if your bowel symptoms are one reason why you need benefits, if all recent tests on your digestive system are normal, couldn't you still get the benefits just on your mental health diagnoses? No objective tests to worry about there. Do you have a good psychiatrist who can support your claim? Maybe a psychiatrist could write a letter saying that even though your test results don't show active colitis anymore, you are still getting bowel symptoms that contribute to your depression. Switch the emphasis onto the psychological impact rather than the physical test results, plus the psychiatric issues you have that are unrelated to UC.


----------



## juac

How hard is it to get disability started? Will your doctor help you? It's got difficult to hold up for 8 hours a day now. Thanks!


----------



## UnXmas

What country are you in, juac?


----------



## Wildmtnhoney

Well, I guess I'm here now, too.  

I just officially started the process to file for disability in the US.  

I had to leave my latest job because it was only part time, I had no benefits, no leave, and I was racking up too many absences due to dr's visits.  I was going to get fired.  So I left.  

I have letters stating that I needed more frequent bathroom breaks, etc.

I started the process over the phone.  I am going to go in to the local office here in a bit with a bunch of paperwork, including my latest w2 and paystub, because I barely have enough work credits.

This is rough on the self esteem


----------



## Kit

Good Luck Wildmtnhoney!  I hope the process goes well for you!


----------



## cantthinkstr8t

Last week my dr had the "not working" talk with me...AGAIN.  My job has been great-they dropped me down to part time, I make my own hours-the only requirement is that I am never alone(seizures).

I came home today in tears.  I am so tired!!  I have been sick and still working-last week I missed 3 days and this week I am going to miss one.  We don't have the money for me to not work and wait for disability.


----------



## UnXmas

I'm sorry to hear that, Wildmtnhoney. I hope the process goes smoothly for you.

cantthinkstr8t - do you mean your doctor thinks you should be able to work?


----------



## cantthinkstr8t

UnXmas said:


> I'm sorry to hear that, Wildmtnhoney. I hope the process goes smoothly for you.
> 
> cantthinkstr8t - do you mean your doctor thinks you should be able to work?


Sorry, no.  He mentioned it briefly last year.  We compromised and I went to part time.  Now, he is back to not thinking I can/should work at all.  He thinks it is too much for me and my body.


----------



## Kit

cantthinkstr8t said:


> Sorry, no.  He mentioned it briefly last year.  We compromised and I went to part time.  Now, he is back to not thinking I can/should work at all.  He thinks it is too much for me and my body.


That is good for getting disability, that means he is on your side.


----------



## Ann Morgan

cantthinkstr8t said:


> Last week my dr had the "not working" talk with me...AGAIN.  My job has been great-they dropped me down to part time, I make my own hours-the only requirement is that I am never alone(seizures).
> 
> I came home today in tears.  I am so tired!!  I have been sick and still working-last week I missed 3 days and this week I am going to miss one.  We don't have the money for me to not work and wait for disability.


I want you to know that I know EXACTLY how you feel.  A lot of unexpected things have happened in my life during the past ten years. I have been trying my best physically and emotionally and mentally to handle these changes, but it has been a hard road to travel.

I was at my lowest in 2012. I had no job. I had no health insurance. My unemployment benefits were all used up. I have mental health issues and I could not afford my medication ( which eventually landed me in the hospital in 2013). I was isolated for a year and never went anywhere or did anything. I had hired a law firm to handle my SSD application and to deal with the entire process. The worst day was September 10th, 2012. I was supposed to have my SSD hearing on September 11th, 2012 and it had been cancelled and rescheduled for January 2013!  I had waited 21 months for my hearing by January 2013. Those were the longest 21 months of my life. 

My sister was my life saver. She supported me financially for several months until I had my SSD hearing. Without her I would be homeless. I still cry when I think about it. I did not have to pay her the money back. At first I felt guilty, but it was not actually a financial hardship for her to give me the money. My mom wouldn't let me live with her, so without my sister helping me where would I go ?

Don't give up. There are probably programs or assistance in your community that you may qualify for but you just don't know it. There must be someone in your city that you can contact about getting resources. Don't give up. :welcome:


----------



## Ann Morgan

UnXmas said:


> What was the medication your doctor wanted you to stop? If tests showed no sign of UC, he wouldn't have been able to keep you on UC medication, as he'd be putting you at risk of the side effects, which with many meds can even be quite dangerous, without being able to claim the potential benefits of the med outweighed them. If he'd done adequate tests and found nothing that could justify prescribing you the medication, his hands would have been tied. Did he look for other causes of diarrhoea after the colonoscopy?


As of today I am taking one or two Questran packets a day and two Lialda pills a day.


----------



## Ann Morgan

DougUte said:


> I've never seen a doctor charge for that so I really don't know.


Certain doctors that I had been seeing wanted money to fill out some of the special forms that my Attorney had sent me. I went to three doctors to hand-carry the special forms to them. I believe only one doctor filled out the forms and returned them to my Attorney. I want to thank my wonderful Gastroenterologist for filling out those forms.:dusty:


----------



## Ann Morgan

durwardian said:


> They think they know what is best to look at, and complain about withholding stuff if you don't just give them access to your records. A lawyer usually won't charge you unless you win. The process is then so much easier. But, I tried twice without one, and didn't get anything. Then with one it went through really fast.
> 
> So, you send them everything, and then they want to be able to talk to your doctors anyway. But it is all part of the frustrating process they put people thru. They claim too many people are abusing it, but I don't know how that would be possible when it would be easier for me to try and find a door to a parallel universe.
> 
> And yes, if it is partial, say so. They will drill you over and over with trick questions. And try like the dickens to make you look like a lazy complainer. It is horrifying. I finally started asking to speak to a supervisor. Asked them why they were calling me when they had everything they needed? There shouldn't be any questions at this point. They may have you go to court. The problems with Crohn's, are that the rule book says 6 continuous months where you cannot work due to your disabiliity. Flares can last that long, and we go to work so we can pay the rent, no matter how much pain we are in, or how much torture it is. If you do, you are disqualified. If you don't, you go broke and end up on the street waiting for social security to pull it's head out of the sand and be real about it.
> I, for one, would dismantle social security the way it is today. We are sharing the social security money with people who come from other countries and never have participated, like it is some sort of welfare for everyone. I think we need separate piles of money to deal with the costs of things that they keep throwing into the social security pile. In addition, I don't think Social Security should be able to second guess our doctors. If more than three doctors say I'm sick and can't work, it should be done, and fly through. The people on the other end are not even doctors until maybe the 4th or 5th stage. In the beginning, it is simply people checking to see if you meet all of the qualifications, and that all of the paperwork is together, and that you are who you say you are, and that you have worked in the jobs you worked in, and if any of those jobs can be done from the seat of the toilet.. it is insane.
> And to top it all off, once you do qualify, they give you less than half of the known bottom of the poverty income, and can still deduct from that for medical bills owed and other government things. So you can be left with $700/month for everything. HUD housing is 2 to 5 years waiting list almost everywhere, so you try and figure out how to survive until cheaper rent kicks in. If you have anything of value, none of the help agencies will assist you until that is gone or sold. I can't see why anyone would want to try really hard to get into social security, unless it is the last resort, like in my case. At least something to try and survive on. But it doesn't work, front to back I have to ask people for help to get by.
> Anyway, good luck with the application. Let me know if you run into snags I can help you with.


Wow, you sure know your stuff !
You are true in all that you say.
One of my neighbors just applied for HUD housing. I don't know how many people applied, but she is #268 on the list. She is so happy that she is on the list, even though she knows it may take a long time to go through the process. She receives a very small amount each month in benefits, I actually have no idea how she can afford the rent here without having any assistance. She utilizes every resource and assistance and program that she can. She does not own a vehicle.     Everyone have a great week.:drink:


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## Ann Morgan

nogutsnoglory said:


> During the decision making process, does SSDI ever call and ask questions? I just want to be prepared on how to answer. Not sure if they do this kind of thing.




Always be honest when answering any questions, but don't ramble on and on and talk too much. Be focused and stay on point. Act smart and educated and confident ( even though you may be very, very, very nervous ).  I had an Attorney at my hearing and that really helped me out. :study:


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## Jennifer

What kind of law firm did you use Ann Morgan? Was it one that's nation wide like Binder and Binder?


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## Wildmtnhoney

OMG! 

I just filed on MONDAY and now I'm already on the phone with someone -- I thought this moved slowly!!


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## Scoocha

Sorry you have to stop working. I'm in the same boat. I think you should gather all your medical records and apply for disability. IBD is on the list of disabilities. Include in your application ANY deficit related to the disease. Before you discount SSD, really look into it. Haven't posted before, hope it works.


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## Ann Morgan

I used Binder and Binder. I am glad I did. I have mental health issues and I was not taking any psychiatric medications for a year due to having no health insurance. They did all the work and took care of things that I could never had done myself because of my Major Depressive Disorder and Anxiety.  Yes, they did get paid after I won my case, but it was worth it. Now I have the SSD benefits and I won't be homeless. I also qualify for programs now to help me with a free psychiatrist, free psychiatric medications and also programs to help me learn coping skills/socialize.  Thanks for listening.


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## Wildmtnhoney

Ann, 
I'm so glad it worked out well for you.

I'm kinda worried about not going w/lawyers right now, but I can't justify it in my head for a first try.  If/when I get denied I figure I'll need to get them for the 2nd attempt.  Likely flawed logic there.  

I'm still reeling from the phone call this morning.  It wasn't a big deal, but it was to me.  I had applied online, so the rep from the office called me today to go over my work history over the phone, and verify some of my Dr's addresses.  He was nice and calm.  I felt bad, though.  We were on the phone so long I had to put him down and run to the toilet!! :-O 

I have mental health concerns as well.  In fact, my date of onset is way back in '07.  I haven't held a steady job since then  I've just been too stubborn to file. But now, with everything I've got going on, and having failed a trial of work AGAIN...it was just too much.  I had to do something.  

We talked about my most recent attempts to work, from 07 to this last job that just ended in March.  He asked how my performance was.  I explained that it was "normal" when I was able to sit at the desk, but that my time sitting was limited by various conditions (bathroom breaks, walking breaks for bad viens, etc etc) and days off for other reasons, etc etc.  He said that all works in my favor, and he was making notes as we talked. 

He said he was sending my file off to the "medical determination" people today - is that fast, or normal, or what??


----------



## Jennifer

Ann Morgan said:


> I used Binder and Binder. I am glad I did. I have mental health issues and I was not taking any psychiatric medications for a year due to having no health insurance. They did all the work and took care of things that I could never had done myself because of my Major Depressive Disorder and Anxiety.  Yes, they did get paid after I won my case, but it was worth it. Now I have the SSD benefits and I won't be homeless. I also qualify for programs now to help me with a free psychiatrist, free psychiatric medications and also programs to help me learn coping skills/socialize.  Thanks for listening.


I've been hesitant about using them for my husband's case as another member hasn't had a good experience with them. They don't seem to be very proactive in some cases. If he's denied again then we'll look into using them. We should be getting a decision maybe this month.


----------



## Ann Morgan

Wildmtnhoney said:


> Ann,
> I'm so glad it worked out well for you.
> 
> I'm kinda worried about not going w/lawyers right now, but I can't justify it in my head for a first try.  If/when I get denied I figure I'll need to get them for the 2nd attempt.  Likely flawed logic there.
> 
> I'm still reeling from the phone call this morning.  It wasn't a big deal, but it was to me.  I had applied online, so the rep from the office called me today to go over my work history over the phone, and verify some of my Dr's addresses.  He was nice and calm.  I felt bad, though.  We were on the phone so long I had to put him down and run to the toilet!! :-O
> 
> I have mental health concerns as well.  In fact, my date of onset is way back in '07.  I haven't held a steady job since then  I've just been too stubborn to file. But now, with everything I've got going on, and having failed a trial of work AGAIN...it was just too much.  I had to do something.
> 
> We talked about my most recent attempts to work, from 07 to this last job that just ended in March.  He asked how my performance was.  I explained that it was "normal" when I was able to sit at the desk, but that my time sitting was limited by various conditions (bathroom breaks, walking breaks for bad viens, etc etc) and days off for other reasons, etc etc.  He said that all works in my favor, and he was making notes as we talked.
> 
> He said he was sending my file off to the "medical determination" people today - is that fast, or normal, or what??


Wow, you are doing a GREAT job!  I have heard MANY folks tell me that they won their case the first time they applied. It sounds like everything is going your way. I had to wait 21 months for a Hearing, it sounds like you won't even HAVE to have a Hearing at all ?  

The first time I applied I did the application online and I was declined and so I gave up and did not appeal or reapply. I had no one to guide me or help me with the process. I was tired. I was not working. And I had mental illness issues in addition to my Ulcerative Colitis.

I got an Attorney the second time because of my inexperience with applying online the first time.

I had a bad mental breakdown in 2007 that has changed my entire life. I was laid off from my 24 year job at a bank in 2009 due to "workforce reduction". 

I think I won my case because the judge/court determined that I could not work at a job like the one I previously worked at because of the Ulcerative Colitis ( running to the bathroom all day long, causing me to take a lot of time away from my work at my desk). And with having Major Depressive Disorder AND Anxiety I would have to take more breaks during the day for that too so that I could rest mentally.

I wish I would have appealed the first time around. After being laid off from my job due to the terrible economy in April 2009 : I spent my entire Severance Pay, and spent my entire Retirement Pay and used up all my Unemployment Insurance Benefits. THEN my sister had to support me for several months. I started to receive Social Security Benefits and Medicare and SSD back-pay in January 2013. THAN GOD !

I wish everyone here success !!!!!


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## Jennifer

My husband received his 2nd denial letter in the mail today. He does not have Crohn's but another illness that's not on the disability allowance list. Hard to prove what can't be seen. We're going to apply for a hearing with a judge after Easter. Hopefully we won't have to wait for too long because we're not financially stable. His state disability runs out in early May. I might get forced back into work myself.


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## nogutsnoglory

Sorry to hear Jennifer. I also got my first denial which pisses me off given that ive had so many surgeries and procedures. They gave me the bullshit excuse of insufficient evidence. I'm sorry but would they like jars with my old intestines in them?


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## Jennifer

That's awful. I'm disgusted with the system right now.


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## nogutsnoglory

It's very frustrating, not to mention the amount of work they make a sick person do. I understand people take advantage and they have to knock off the fakers but it's a very unfair system.


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## afidz

Sorry you guys got denied  this process sucks.  NGNG don't take it to personally,  there are only very special circumstances that gets someone approved on the first time. It also really depends on who your case worker is and when you get to hearing,  who your judge is. I found out that having a severe non repairable hernia IS considered a disability.  They have a listing for it. I SHOULD of been declared disabled. I also found out that my judge put his own personal feelings about obesity in America into his decision.  I was denied because I'm over weight and he doesn't like fat people.  I am an intern for a social security lawyer,  she has proof that he does this sort of thing. And it sucks even more that these judges are practically untouchable, unless they do something really bad. So it doesn't matter that they put there own personal feelings into the decision.  They can do what they want.  There is another judge in my district that doesn't believe in mental illness!  

Long story short.  Filing for disability is demeaning and awful.


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## nogutsnoglory

That's absurd that anyone would discriminate based on someone's weight or mental health. For all the advances in society and awareness we sure are pretty backwards. It's very sad that people don't care about invisible disabilities.


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## Ann Morgan

nogutsnoglory said:


> It's very frustrating, not to mention the amount of work they make a sick person do. I understand people take advantage and they have to knock off the fakers but it's a very unfair system.


I understand what you are talking about.....

In 2007 I was on short term disability from my job due to mental health reasons and the headquarters for my employer wanted me to fill out paperwork and then deliver paperwork for doctors to fill out. That was a lot of work for me. I had just had a mental breakdown and couldn't think much at all.....I was sick. I do inderstand that paperwork is neccessary but I had no one to help me....no friend, family or advocate. 

THEN the short term disability lady from my employers headquarters would call me on the phone CONSTANTLY to ask me when I was going to return to work !!!!!  These calls made me very stressed. I WAS seeing a Psychiatrist. I told the lady to call my doctor to find out when I would be returning to work, after all it IS up to him to sign a release form for that says I am capable to return to my job. 

THEN some Aetna Health Insurance lady ( a nurse or counselor ? ) would call me all the time wanting to talk. After two or three of her calls ( yes, I did talk to her) I told her I did not want to talk to her anymore. I had constantly been going to the hospital and emergency room prior to her calls  due to my mental illness ( AND I had kidney surgery too. )  I honestly think my Health Insurance people were sick of paying for all my health insurance claims and wanted to know what was going on.  

My Employer WAS paying me 100 percent pay for 5 months short term disability and I used it all, but THEY set up that policy not me. I had worked for them since 1984 so I surely earned the right to have the short term disability coverage. 

Anyhow, I went back to work after 5 months even though I was NOT mentally stable at all, I still needed to be on the correct medication "cocktail" and I needed counseling. If I had not been suffering from mental illness at the time I may have realized that I could have tried to qualify for long term disability through my employer. Less than two years after my mental illness short term disability I was let go from my job due to "workforce reduction". What a roller-coaster ride.

I started receiving Social Security Disability benefits in January 2013.

Thanks for listening.


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## Ali29

My regular health insurance company is now regularly making calls to me, finding out what I'm going through, offering services (free counseling, dietician -but don't know what diet as the ones I've tried have done nothing, 24 hour nurse line, etc) that are free for me through the EAP.  I wonder if this is a good thing or bad  (CAN THEY STOP COVERING ME - THESE CONVERSATIONS ARE SCARING ME - SHOULD I KEEP TALKING TO THEM?  However I may take advantage of the 5 free counseling sessions.

I don't receive any income from Disability or SSI.  I've had so many procedures they keep coming up with things that it might be and when I research them, some of them I would have bet my life on it that it was it.  I have so many different pieces to many different diseases.

Long Term Disability (Cigna) denied me - even citing items that I had proven to them exist, I talked to a lawyer who has gone up against them - she said they are relentless and won't back down - denial 3 times - no more appeals.  This was extremely upsetting, SSI has denied me twice - awaiting appeal in front of a judge.  I have lost and continue to lose weight from the nausea, D, and pain.  I'm tired of results coming back within the normal  range or elevated but not enough to prove without a doubt - for me apparently they are not normal as they are causing illness.  I have so much bile in my stomach (which could account for nausea/pain and BAD.  Lots of mucos on severe D days.  Some days I feel so defeated and just have a crying day -  have GI appt this week to get results of last tests.

One big thing I have done is the Celiac Plexus Block - 1st time didn't help at all, last week another one but they injected on both sides of the spine - this one has helped with some of the pain (in the actual stomach) but the burning in the esophogus is extreme & I still have pain in the upper right quadrant - liver & kidney area.  They do these shots sometimes in series - however we are just masking the problem which is why the Pain Dr has waited to do them (and I was petrified).

I have not received a single penny since I have been unable to work - I'm so greatful I have a husband who has a job obviously significantly altered our lifestyle & retirement plans.  I do not get how they keep denying me when I had a great 30+ year career with nice money - without a final diagnosis with technical backup (I have lots of things going on that can be documented) - I don't know what else to do.  I do have an SSI Attorney so we will see.

This whole process has disgusted me - I get they have to weed out but I read/hear about what has happened to others and angers me that those of us who are sick are reduced to playthings with government - it is sickening and I believe the stress of it makes us even more sick.

Good luck to all - thanks for letting me vent!!


----------



## cantthinkstr8t

Ali29 said:


> My regular health insurance company is now regularly making calls to me, finding out what I'm going through, offering services (free counseling, dietician -but don't know what diet as the ones I've tried have done nothing, 24 hour nurse line, etc) that are free for me through the EAP.  I wonder if this is a good thing or bad  (CAN THEY STOP COVERING ME - THESE CONVERSATIONS ARE SCARING ME - SHOULD I KEEP TALKING TO THEM?  However I may take advantage of the 5 free counseling sessions.
> 
> !


My insurance company is doing the same thing-they have even offered me my own NP to come to the house.  I do not think they can drop you this year-when it comes time to sign up again, they might be able to.  It still scares the crap out of me though. I have met my deductible and out of pocket already so I imagine they are not liking all my bills.


----------



## nogutsnoglory

My insurance is constantly calling for this service. They have called me 30+ times over the past year. I'm sorry but I'm not signing up, they don't care about me it's got to be a way to cut costs by getting info and sending me to cheaper providers. I have a brain, if I have a question I'll ask my doctors or come here. I'm not calling the company that wants to decline anything that will cost them another Penny.


----------



## Ann Morgan

nogutsnoglory said:


> My insurance is constantly calling for this service. They have called me 30+ times over the past year. I'm sorry but I'm not signing up, they don't care about me it's got to be a way to cut costs by getting info and sending me to cheaper providers. I have a brain, if I have a question I'll ask my doctors or come here. I'm not calling the company that wants to decline anything that will cost them another Penny.


I agree.......why should I talk to a Health Insurance Company Nurse when I have a pretty decent Primary Care Physician and 7 Specialists that can surely answer all of my questions ( that is what they are there for.) I just started United HealthCare in January 2014, but have never had a Nurse call me or anything. 

I see all of my Specialists when needed. My Endocrinologist twice a year. My Urologist twice a year. My Gynecologist once a year and a mammogram. My Rheumatologist and Orthopedist as needed. And my Gastroenterologist as needed. And my Psychiatrist is paid for by a program our County has here. And I saw a Podiatrist for a one time visit last year. What a list !

Well, this is enough chatting for me today. Have a good week.


----------



## Wildmtnhoney

Husband brought in yesterday's mail and social security had already sent the functional assessment!  Just finished filling it out, he's putting it back in the mail, and I'm trying not to panic.


----------



## peluchde

twokatmew said:


> I had to stop working in 2004 after a 20+ year career in IT.  I was diagnosed with Crohn's is 1975 at 13, and I always have to be on at least 5mg prednisone to keep Crohn's relatively well controlled. It was getting more and more difficult to work, and when I finally had surgeries in 2004 & 2005, that was it for my career.  I was devastated at first, but once I started to reap the benefits of not practically killing myself by working and not having the energy to take the best care of myself, I began feeling much better about not working.
> 
> Anyway, just thought I'd say "hi" and offer any advice to those applying for SSDI.  Because I had to go to court to get approved, I get reviewed every three years.  I'm due for another review this year.  Every review is a bit nerve wracking, but my docs support my disability status, and deep down I know I wouldn't be here if I hadn't finally given up working.


Hello, there.  I am getting to the point that I think I need to give up my teaching job.  After 4 plus years on Humira, it has stopped working.  I'm now on Imuran and Entocort and still in pain.  Hard to teach/prepare for a bunch of children each day.  Hard to miss school for the many doctors' appointments.  Exhausted everyday...  I would like to apply for disability, but I don't know how to start.  I am 59, soon to be 60, but I don't think I can do this much longer.  I'm constantly getting infections from the children.  If you have time, please tell me the best way to get started on all of this.  Thank you.


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## nogutsnoglory

I would speak with a lawyer peluchde, the fact that you are currently working means they are likely to immediately toss your claim. I know that isn't fair but they generally only give credence to claims for people who Fahrenheit been working for a significant amount of time due to disability.


----------



## Jennifer

Agreed with talking to a lawyer. The process without one can potentially take years whether you're currently working or not.


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## AutumnKirsten

Jennifer said:


> Husband says you can apply for unemployment online and that its faster that way.
> 
> I receive SSI for Crohn's and don't work. If anyone needs help with applying for SSI I can help answer questions.


How long is the typical amount of time to get approved for SSI. I finally after 9 months got approved for Medicade and my social worker said that would make it easier for my SSI to be accepted this time.


----------



## cantthinkstr8t

I was just fired today after spending a week in the hospital. I guess I will be applying sooner than planned.


----------



## Ali29

Sorry to hear cantthinkstr8t - Good luck!!


----------



## nogutsnoglory

cantthinkstr8t said:


> I was just fired today after spending a week in the hospital. I guess I will be applying sooner than planned.


That's illegal. Where are you located?


----------



## AutumnKirsten

cantthinkstr8t said:


> I was just fired today after spending a week in the hospital. I guess I will be applying sooner than planned.


So sorry to hear that! It is totally illegal, but I have had it happen 3-4 times depending on how you look at it. It isnt fair, but everything I have tried to do about it was shot down. Thinking of you


----------



## cantthinkstr8t

nogutsnoglory said:


> That's illegal. Where are you located?


Texas, it's an at will state.


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## nogutsnoglory

According to Wikipedia's at will state page they can't fire for needing medical leave and they also must comply with federal law in which case you are protected under the Americans with disabilities act. 

"family or medical leave – federal law permits most employees to take a leave of absence for specific family or medical problems. An employer is not permitted to fire an employee who takes family or medical leave for a reason outlined in the Family and Medical Leave Act of 1993."


----------



## Wildmtnhoney

It's not entirely illegal.  It's why I quit my job.  I was a part-time employee with no benefits, no access to FMLA because I hadn't been there a year yet, and my absences  were piling up.  I was also under a union contract, so there was little wiggle room for my boss to "work with me" to prevent me from being terminated.


----------



## afidz

nogutsnoglory said:


> According to Wikipedia's at will state page they can't fire for needing medical leave and they also must comply with federal law in which case you are protected under the Americans with disabilities act.
> 
> "family or medical leave – federal law permits most employees to take a leave of absence for specific family or medical problems. An employer is not permitted to fire an employee who takes family or medical leave for a reason outlined in the Family and Medical Leave Act of 1993."


She probably wasn't fired for needing a medical leave. They can fire you for anything with out cause. "I didn't like her "attitude yesterday" "Her hairstyle doesn't fit in with company standards" I was fired under the same pretences. What they did was legal.


----------



## AutumnKirsten

afidz said:


> She probably wasn't fired for needing a medical leave. They can fire you for anything with out cause. "I didn't like her "attitude yesterday" "Her hairstyle doesn't fit in with company standards" I was fired under the same pretences. What they did was legal.


Exactly. They get around the laws.


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## afidz

Like I mentioned above, I started interning for a social security attorney. (I am about to get a degree in paralegal studies) It has been an eye opener for me in so many ways. I just want to share my experience with you guys, maybe it will help 
1. HIRE AN ATTORNEY. It doesn't matter if you hire one from the beginning or hire one at the hearing level. They are going to get paid the same so you mind as well have one from the beginning. DO NOT hire an advocate. Again, it will cost you the same as hiring an attorney, so you mind as well hire an attorney to make sure that your case is being handled correctly. All of the fees are strictly regulated by the government. It isn't until after you get denied at hearing that they can petition for more money, and even then, that is regulated. 
2. Unless it is a clear cut, there is absolutely no way this person could even dream of working kind of case, you are going to get denied on your first try. There are a very small amount of diseases that get this kind of approval. Don't let it discourage you, its just part of the process. 
3. The second stage is more or less the same, except this is where they would accept a few more types of illnesses. With Crohn's, you will probably still get denied. Don't let it discourage you. 
4. It is IMPERATIVE that you go to the doctor on a regular basis. If there is a gap in care, the judge in the next step will likely deny you. If you aren't going to the doctor on a regular basis, you must not be that sick. 
If you are filing for a mental disability, you need to go to the doctor at least once a month, if its physical, they aren't so strict about it, but at least every 2-3 months. 
When you go to the doctor, tell them what your worst days are like. They will type it into their notes...your MEDICAL RECORDS. 
5. When you are filling out your function report, think about your worst days. Don't ever talk to social security about your good days or days where you are "ok". To them, those are the days that you can work. 
6. Understand that this process is AWFUL an exhausting. Getting to hearing level alone takes up to a year, maybe even more depending on your district it takes a year to 15 months to get scheduled for a hearing, if you get denied at hearing, it takes 15-18 months to get a remand, after that it goes back to the judge that denied you. After that is just a whole nother process that I don't really know anything about. 
7. If you hired an attorney, DO NOT speak to the SSA. You might incriminate yourself. They aren't even supposed to be talking to you with out your attorney's permission, but if you call them...well thats on you. All contact with them should be through your attorney. 

Obviously, this is not legal advice. I am speaking soley on experience that I have gained through my own disability claim and through interning with a social security attorney. I hope this info helps.


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## nogutsnoglory

Good advice thanks. In what ways might one incriminate themselves by talking to SSA? I spoke to them and they were shady asking if I filled out the function report. I hope they don't say because I can fill it out that somehow I can work.


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## afidz

You could imply that you are feeling well enough to work with out realizing it, or on your function report do the same thing. If you have an attorney (which you should) only communicate with them. Even if you think its a simple question, they know how to trick you. Don't risk it.


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## nogutsnoglory

I think I'm gonna hire one. I already sent my function report and was too honest by saying I have better and worse days and said there are times I can drive. I should have said I can rarely drive and with difficulties.


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## afidz

You might have incriminated yourself, but don't worry because you will fill one of those out every 6 months. On the next one, don't ever talk about a good day. Your good day is still 10 wrose than a normal persons bad day, keep that in mind. We have to deal with more than what people realize. Shop around for attorneys. I wouldn't hire binder and binder, but thats just in my opinion. You get a more personalized experience with someone local.


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## shambeyla

Hi everyone,  I just got home from my job. I was let go because I've been hospitalized every month since Nov 2014. I told my New boss when he hired me, that I have Crohns, and he's always been ok with it. Until today. I had a GI bleed last Wednesday and was ambulanced to a bigger hospital where I received the 3rd blood transfusion in 3 months. I don't know what to do! I'm a single Mom of 3 kids, on medical and food benefits, and don't know how this is ok?! Help!!

Katie
Diagnosed in 2001, Crohns Colitis. GI bleeds more often each year. Currently on Humira and Imuran.


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## Kit

Katie, I think you are on the definite road to Social Security Disability.  At least for now.  Read though the thread for help on how to get started.    I am not on disability, but this thread is very helpful!


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## shambeyla

Thank you so much!


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## Ann Morgan

afdiz: You are absolutely right. I hired an attorney. I never talked to SSD. My medical records absolutely won my case for me, everything was documented on paper from a healthcare professional. I DID have to wait 21 months for my hearing, but that is because it was cancelled once and  rescheduled. During the hearing I answered all of the questions honestly, but kept my answers short and did not ramble. I DID hire Binder and Binder. I won my case in January 2013. I got backdated settlement pay and qualified for Medicare right away. I cried a lot during those 21 months. 

I believe my review is every 3 years. I already have seen A LOT of doctors since winning my case ( at least 6 Specialists and I have even been admitted to the hospital ).  I have already made a list of every doctor, hospital and healthcare professional that I have seen since I won my case because I know that is probably what they are going to ask for during my review?  I have to stay ahead of the game.I don't want to be homeless and without health care.

Thanks for listening. Best of luck to all of you out there who are dealing with this whole process. I have Major Depressive Disorder and Anxiety. Also Ulcerative Colitis. I have arthritis in my neck with VERY LIMITED mobility. I have osteo-arthritis in my shoulders and I cannot lift my arms above my head. Also arthritis in my hips and in my lumbar spine. Etc !

The good thing is that last year I caught up on seeing all of my Specialist Doctors and I have had numerous x-rays, ultra sounds, scans, and lab tests which I am sure will a great help as far as my review ?

I always keep a list of all of my health conditions, surgeries and medications in purse to give to any new doctors that I see.

Ugh, right now I have c-diff and this has never happened before. I don't understand why I am so sick and I am only 54 years old. All these illnesses started years ago but little by little got worse. I honestly feel like I am 90 years old and I hate it. Neighbors ask me if I need help, strangers open doors for me and people older than me volunteer to reach something in the grocery store for me. I even need a step stool to stand on to reach my mailbox at my apartment complex ( my mailbox is about a foot over my head, I am only 5 foot 2 inches and shrinking every year ). Sorry this got so long. Have a good week.


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## peluchde

Ann, I'm glad you finally got your benefits.  I keep pushing myself and usually go in the hospital once or twice a year.  I've had no surgeries, but 10 obstructions/hospitalizations.  I wish iould stop working and get stronger, but we need my salary and health insurance.  I was told I couldn't even apply for disability until I'm no longer working and if I'm not working, I can't pay the doctors or for my medicine.  Terrible spot to be in.  Hope I don't die at my desk.


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## Ann Morgan

Yeah, you can't be working. 

I was let go from my job due to "workforce reduction" in April 2009, so that is the last time I worked. 

I had a serious mental breakdown in April 2007. When I went back to work after 5 months Short Term Disability I could not even remember how to do my job. Pretty sad. My brain was truly "broken". I tried my best at work from August 2007 until April 2009......but of course I was the person picked to be let go because of the recession . My work performance sucked at the time I was let go. Embarrassing.

I was at that job for 24 years. I had spent my entire life working hard, being an excellent employee. I was smart, reliable and responsible. I worked well with other employees and my bosses. I could handle huge responsibilities, large amounts of money and strict deadlines. I came in early, stayed late, skipped lunches, skipped breaks and brought work home and did not get paid for it. I had drive, purpose and value.

Today:  My memory and focus sucks. I used to love to read books, now I can't even read a book. I loved movies at the theatre, but now I cannot do that either. I cannot focus during a 2 hour movie. And I cannot remember what I have read and I have to keep re-reading the first 100 pages of a book. I give up. 

I used to have a job AND handle all the health crap that is wrong with me....plus groceries and laundry and driving and phone calls and money and gas stations, etc. Now I get anxiety if I drive more than 10 miles from my apartment and if I am gone from my apartment for too long, if I am in the grocery store for over 1/2 hour. And the depression has sucked all the joy out of my life. I was in the hospital 1 1/2 years ago and I am still looking for that joy. When I was in the hospital they asked me "what do you like to do". I told them nothing. And then I said "That's why I'm here ! ".  Later on in a Partial Hospitalization Program I was asked during a class " what is one thing you like about yourself". Everyone at the table listed something. When it came to my turn I said that I could not think of one thing. I still can't.

I am rambling tonight. I will go watch."Jeopardy" now. Maybe I will get smart again ?

Good Night.


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## UnXmas

> I honestly feel like I am 90 years old and I hate it. Neighbors ask me if I need help, strangers open doors for me and people older than me volunteer to reach something in the grocery store for me.


At least it's nice to see that there are some kind people where you live. Sorry you had to find that out this way though.


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## Kit

I am so sorry Ann.  I am glad you have this forum to be a companion to you.  God has a purpose for us, though we may not know what it is.  Hang in there and find the small joys in life.  Birds/Butterflies/sunshine/friends (virtual and other)/family/a place to live/even just being able to get up in the morning.  We are here for you and thanks for sharing your story.


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## afidz

Ann Morgan, 
I don't know anything about the review process. I am in the Appeals Council Stage now and I don't ever hear my attorney talking about representing people in review. But I would imagine that keeping documentation of everything is beneficial. They like to see that you are going to the doctor regularly. If MHMR is listed as a disability, make sure you are getting regular treatment for that, they are big ole sticks in the mud about that stuff when it comes to MHMR. If it isn't listed, I would still make sure to be getting regular treatment. When it comes time to review, if your mental health state has decreased, that would want to see documentation of that along with consistent care. 

Peluchde I am dumbstruck by this whole process. I haven't been able to work since January 2012. If I didn't have a very loving financially able boyfriend to help me with my expenses, I would be homeless. And the sad thing is, most of the people that I talk to all day are homeless. They bounce from shelter to shelter just waiting to hear if they won their case or not. Its heartbreaking. But, its the govt, can't make them go any faster.


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## CD mom

Can anyone give advice in finding an attorney in the Pittsburgh area for help in filing for Social Security Disability?


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## Stardust_Fiddle

I used Berger and Green in Pittsburgh and did everything over the phone with them. They take a percentage of your initial payment if you win, and if not, then they don't get paid.


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## CD mom

Thanks Stardust. I will give them a call.


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## Stardust_Fiddle

Good luck!


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## afidz

My attorney called me today, my case has been in appeals council since October, it is supposed to be in AC for 12 to 18 months. I don't know why they called me, anxious about calling them back. I REALLY hope they remanded my judge's opinion. He made a decision based on my weight. The SSA has a list of things that they consider a disability, the 3 things that play the biggest role in my poor health are on the list. I should have won last summer. Keeping my fingers crossed. I will update tomorrow when I call my attorney back.


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## Ann Morgan

afidz said:


> My attorney called me today, my case has been in appeals council since October, it is supposed to be in AC for 12 to 18 months. I don't know why they called me, anxious about calling them back. I REALLY hope they remanded my judge's opinion. He made a decision based on my weight. The SSA has a list of things that they consider a disability, the 3 things that play the biggest role in my poor health are on the list. I should have won last summer. Keeping my fingers crossed. I will update tomorrow when I call my attorney back.


I know you will get approved !!!!!


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## Scoocha

After 30 years of Crohn's, I decided to apply for SSDI. This is different from unemployment compensation. With SSDI your saying you can't work but with unemployment you're saying you can work. It sort of puts you between a rock and a hard spot. Both entities have case judges and some don't care if your collecting UC as you apply for SSDI. It was a hard case your me but I am not collecting UC and waiting for SSDI to make their decision. A good thing about SSDI is you can try going back to work in which case your SSDI will be put on hold and if you can't continue to work you go back on it. SSDI also allows you to work part time and make a certain amount of money. If you search the net you can pick up info on SSDI. Your state site should give you info pertaining to UC. Also see if your Doc has a person in their off that you can talk to. If you need to lawyer-up, choose wisely.  It's a shame we have to jump through these hoops when our health is failing. Hang in there and try to smile.


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## afidz

Keep in mind that there are two different types of disability. SSDI or Social Security Disability Insurance tends to be the higher amount. If you are eligible for this type, it is based off of how much you have contributed to the system. Your payments are not effected by spousal income or how much your bills cost every month. SSD (I think thats what its called, correct me if I am wrong) is similar to welfare. This is for the people that have not been able to work enough and considered disabled under the government's standards. Things like your spousal income, the number of people in the home, children under 18 and total monthly bills are taken into account to determine how much benefits you receive every month. This number changes all the time and with out warning. 

As for getting a lawyer, in all honestly there is absolutely NO POINT in waiting until you you get denied a certain amount of times to hire one. They are going to get the same amount of money if you hired them on day one or the day before your hearing so you mind as well hire them right off the bat so they have adequate time to build  your case. I also would stay away from advocacy centers. They aren't licensed attorneys but they get paid the same amount that an attorney does and most of the time, they will mess up  your case because they really don't know what they are doing. Just hire an attorney. Save your self the trouble. 

On another note, I was able to get a hold of Binder and Binder, they are starting to prepare my case for when it comes back from appeals council. Apparently, when you reach the stage that I am at, Mr. Binder HIMSELF takes on the case. I found that interesting. It gives me hope. A big shot like that wouldn't proceed with appeals council if he didn't think he could win. They sent me a bunch of reports and questionnaires to  give to my doctors. I am more than willing, the doctors that they have requested from are incredibly supportive, knowledgeable and understanding about my entire situation. Just sucks that I have to pay them to write the dang reports.


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## Ann Morgan

cantthinkstr8t said:


> I was just fired today after spending a week in the hospital. I guess I will be applying sooner than planned.


Stay Strong !

I got let go from my job in 2009 due to "workforce reduction" ( I had worked there for 24 years ! ).   But I had major mental health issues in 2007 that greatly affected my job performance. I had been a very hard worker all of my life and it hit me like a ton of bricks when they let me go. I hate to say this, but I am still feeling the pain of being "laid off". Still trying to find my place in the world and it is 6 years later. :yfrown:


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## Ann Morgan

afidz said:


> She probably wasn't fired for needing a medical leave. They can fire you for anything with out cause. "I didn't like her "attitude yesterday" "Her hairstyle doesn't fit in with company standards" I was fired under the same pretences. What they did was legal.


I was let go from my job in 2009 but they called it "workforce reduction" because it happened right after the economy crashed and they were also letting go of other people in other departments  ( not just the department I worked in ).  I had a mental breakdown in 2007 and was on Short Term Disability for five months. After I returned to work I could not remember how to do my job and my job performance pretty much went down the toilet. I tried as hard as I could to do my job at the same level as I had before the breakdown, but it never happened.  My brain had "broke". After I returned to work my managers kept track of all of my mistakes and documented them. I was on the radar. I was being watched. It only made my anxiety worse to know that they were monitoring me.  I KNEW I was going to be fired, I just did not know WHEN. It was a sad situation because I had always had excellent performance reviews for the entire time I worked there. l am sure that they kept track of my job performance so that they could have some kind of proof or reason for "letting me go". Anyhow, I am still disappointed and bitter. I was friends with everyone there, even the Regional Manager and National Manager. We were all friends and we all hung out with each other outside of the workplace...........and......we had all worked for the bank for years and years ( some gals for 30 years ! ).   Thanks for listening. 
PS: My brain is still "broke". :frown:


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## Ann Morgan

peluchde said:


> Ann, I'm glad you finally got your benefits.  I keep pushing myself and usually go in the hospital once or twice a year.  I've had no surgeries, but 10 obstructions/hospitalizations.  I wish iould stop working and get stronger, but we need my salary and health insurance.  I was told I couldn't even apply for disability until I'm no longer working and if I'm not working, I can't pay the doctors or for my medicine.  Terrible spot to be in.  Hope I don't die at my desk.


I understand, this whole SSD thing can be very overwhelming.  The worst days of my life were when I was no longer working, all of my money was gone and I had no health insurance. I did not suffer at first. Actually I was very spoiled by an excellent Severance Package when I was let go from my job. Then I found out there was some Retirement Money somewhere that my employer had in an account for me, so I took that money out early ( I was not 59 1/2 years old yet, so I paid a penalty ). Then I actually collected Unemployment Benefits because I actually thought, for some stupid reason, that I could find a job that I would be able to perform ( I never found any ). I am so afraid that the Unemployment people are going to try to get me to pay back my Unemployment Benefits that I collected ( I knew of one person who had to do this after he started collecting SSD ). But I honestly felt like I could do SOME kind of job......something low stress with very little responsibilities and no multi-tasking and no Microsoft experience required  ( how ridiculous my thoughts were ! ).  In 2012 I had no more money and no health insurance and I was waiting for my SSD hearing. I cried every day. My sister gave me money to live on ( how horribly embarrassing, especially after being totally independent my entire life ).  I even started going to Church, but that didn't ease the pain. I now have SSD and I have health insurance. You would think I would feel "secure" but due to my anxiety and depression I worry every day......it is called "catastrophizing". I just want to relax and take care of my health, and then hopefully find some friends and activities to do so that I can take my mind off of all of the things that are wrong with me.    Thanks for listening. :heart:


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## Ann Morgan

Stardust_Fiddle said:


> I used Berger and Green in Pittsburgh and did everything over the phone with them. They take a percentage of your initial payment if you win, and if not, then they don't get paid.




I did everything on the phone too  ( and the computer ). ( I live in Arizona ). I did not even see my attorney until the day of my hearing. My attorney got a good chunk of money from my case because it was back-dated two years. And I got a good chunk of money because it was back-dated two years, and I qualified for Medicare right away. After the hearing I cried all the way home in the cab. 21 months of suffering. Finally it was over. :drink:


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## Ann Morgan

afidz said:


> Keep in mind that there are two different types of disability. SSDI or Social Security Disability Insurance tends to be the higher amount. If you are eligible for this type, it is based off of how much you have contributed to the system. Your payments are not effected by spousal income or how much your bills cost every month. SSD (I think thats what its called, correct me if I am wrong) is similar to welfare. This is for the people that have not been able to work enough and considered disabled under the government's standards. Things like your spousal income, the number of people in the home, children under 18 and total monthly bills are taken into account to determine how much benefits you receive every month. This number changes all the time and with out warning.
> 
> As for getting a lawyer, in all honestly there is absolutely NO POINT in waiting until you you get denied a certain amount of times to hire one. They are going to get the same amount of money if you hired them on day one or the day before your hearing so you mind as well hire them right off the bat so they have adequate time to build  your case. I also would stay away from advocacy centers. They aren't licensed attorneys but they get paid the same amount that an attorney does and most of the time, they will mess up  your case because they really don't know what they are doing. Just hire an attorney. Save your self the trouble.
> 
> On another note, I was able to get a hold of Binder and Binder, they are starting to prepare my case for when it comes back from appeals council. Apparently, when you reach the stage that I am at, Mr. Binder HIMSELF takes on the case. I found that interesting. It gives me hope. A big shot like that wouldn't proceed with appeals council if he didn't think he could win. They sent me a bunch of reports and questionnaires to  give to my doctors. I am more than willing, the doctors that they have requested from are incredibly supportive, knowledgeable and understanding about my entire situation. Just sucks that I have to pay them to write the dang reports.


Okay, I thought I was getting "SSD". I will have to look at my paperwork again ( I keep it in my purse, believe it or not........that letter I got from the government saying I won my case). Or am I receiving " SSDI ".  I worked for many, many years and got good pay. My monthly benefits are way more than a lot of the folks I hear talking about how much they receive monthly. I paid in a lot of money over the years. So, according to your definition above, I am receiving "SSDI".  Anyhow, I can look it up and figure it out.


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## Ann Morgan

afdiz:   Any updates to share with us on your case.    I was thinking about you today.

You mentioned benefits were based on what you put in, and in my case that was true. During my most recent work history I had worked for 24 years at a bank. I have worked regularly since I was 17 years old. I got good pay at my last job since I was there for such a long time ( but never saved a dime :ybatty

I have met some folks that only get half of what I get for monthly benefits, but I have no idea what their work history was or if they are getting SSD or SSI.

Thanks for listening.


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## afidz

I haven't heard anything new, thanks for asking. 
I probably have mentioned this before, but I actually am going back to work. Being on Remicade has Tchanged my life in so many ways, I feel like I have the ability to work for the time being. 
I am still going forward with my case. I will ask for a closed period instead. That means that I am only seeking back pay from the time I was fired from my last job, to the time I get hired (whenever and where ever that might be). I honestly don't care about the back pay. Yes it would be nice, it adds up to a lot of money. We are talking about 3.5 years worth. But what I really want is just the title. I want to be deemed disabled. That way, when I get sick again, it would be easier for me to get benefits. Not only that, but opportunities for scholarships arise, and there are companies that have to hire disabled people because they do business with the government. Maybe I sound like I am trying to take advantage of the government, sorry if I do, but the life we lead is not easy and if I can get help from someone in any way, I am going to do it.


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## Ann Morgan

afdiz:  You are a very smart young lady and I think you are headed down the right path. Getting a good education is a great idea. Never stop learning.  I am so happy that you are finally finding relief from your symptoms !  Thank you for sharing all of your knowledge with us, what you write about may have helped a lot of people.  

When I went into my hearing I did not even know anything about back pay. I burst into tears in the hallway after my hearing when I found out that I was getting two years back pay and that I would immediately qualify for Medicare. Before the hearing I was broke, had no health insurance, was not able to take any psychiatric medications because I was broke and my sister was paying for ALL of my bills. 

Lynda


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## nogutsnoglory

I don't think that's taking advantage at all Afidz. You are being practical and know you may need SSDI in the future and want an easier way to secure it.


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## pink&green

afdiz, I am praying for a favorable decision for you.


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## pink&green

cantthinkstr8t said:


> I was just fired today after spending a week in the hospital. I guess I will be applying sooner than planned.


Sorry this happen to you, this will show that it is very hard with your condition to keep a job. My hubby got approved last October I did all his paperwork for him on line. If you have any questions don't hesitate to ask.


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## pink&green

peluchde said:


> Ann, I'm glad you finally got your benefits.  I keep pushing myself and usually go in the hospital once or twice a year.  I've had no surgeries, but 10 obstructions/hospitalizations.  I wish iould stop working and get stronger, but we need my salary and health insurance.  I was told I couldn't even apply for disability until I'm no longer working and if I'm not working, I can't pay the doctors or for my medicine.  Terrible spot to be in.  Hope I don't die at my desk.


Peluchde, my hubby was the same way. After 24 years of working with this disease he called me at work and said he could not do it any longer. I will keep you in my prayers.


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## pink&green

Wildmtnhoney said:


> OMG!
> 
> I just filed on MONDAY and now I'm already on the phone with someone -- I thought this moved slowly!!


Praying for a favorable decisions Wildmtnhoney!!!!


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## pink&green

nogutsnoglory said:


> Thanks I will, I just want to make sure I can keep my insurance and not go on medicaid or Medicare.


Hubby is on my insurance you have the option to decline Medicaid/Medicare but I told hubby not to.


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## gadgetninjette91

Hi all, this is my first post in this thread and I'm here to ask a question. After a four-year long battle with social security, I was awarded SSI in August of last year for severe mental health issues, primarily bipolar disorder. The judge felt that my condition would improve and wanted to reevaluate 2 years from then. Fast forward to April of this year, got diagnosed with Crohn's. When I'm due for my reevaluation, if by some chance I need an extension due to my Crohn's, will they take that into account assuming I bring in all of my paperwork, scans, biopsy, etc.? I realize it will be an entirely different type of disability case but would this help me qualify for an extension if I really and truly need one?


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## nogutsnoglory

I don't think the crohns will qualify you because it's unrelated to your approved disability. Unless you could tie your crohns to a major uptick in your bipolar issues.


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## Ann Morgan

gadgetninjette91 said:


> Hi all, this is my first post in this thread and I'm here to ask a question. After a four-year long battle with social security, I was awarded SSI in August of last year for severe mental health issues, primarily bipolar disorder. The judge felt that my condition would improve and wanted to reevaluate 2 years from then. Fast forward to April of this year, got diagnosed with Crohn's. When I'm due for my reevaluation, if by some chance I need an extension due to my Crohn's, will they take that into account assuming I bring in all of my paperwork, scans, biopsy, etc.? I realize it will be an entirely different type of disability case but would this help me qualify for an extension if I really and truly need one?


I have Major Depressive Disorder and Anxiety, in addition to my Ulcerative Colitis. I won my SSD case in January 2013 after waiting 21 months. Medical records are the key to winning an SSI/SSD case, so visit your doctor/doctors on a regular basis so that you have current medical records for the court/judge to look at. I believe my case is supposed to be reviewed every 3 years because they thought I may be able to return to work. Part of me is very nervous about having a review. But another part of me knows that I have a lot of current medical records that would be available to the court/judge if needed. If they say I can go back to work they are wrong. I have focus, concentration and memory issues. I suffer from fatigue. I am very depressed, despite seeing a psychiatrist every two months and taking medications. And I physically am not able to do a lot of things due to my arthritis in my neck and shoulders. I used to be smart and have a job, until my breakdown in 2007.  But now I don't even have the ability to read a book or remember things. I want my old brain back but that is never going to happen. Sorry this is so long.


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## CD mom

Incredible! My son applied for SSD in early April and was approved in May. He is 24 and was diagnosed at 8. So glad we didn't have to go through appeals and hearings. 
So relieved, as he has already been hospitalized 4 times since March.


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## afidz

gadgetninjette91 said:


> Hi all, this is my first post in this thread and I'm here to ask a question. After a four-year long battle with social security, I was awarded SSI in August of last year for severe mental health issues, primarily bipolar disorder. The judge felt that my condition would improve and wanted to reevaluate 2 years from then. Fast forward to April of this year, got diagnosed with Crohn's. When I'm due for my reevaluation, if by some chance I need an extension due to my Crohn's, will they take that into account assuming I bring in all of my paperwork, scans, biopsy, etc.? I realize it will be an entirely different type of disability case but would this help me qualify for an extension if I really and truly need one?


Everyone has to go under review at some point, I think more now than ever. There was a big investigation in the Kentucky/ Tennessee area because there was a lot of people that got it under false pretenses (a lawyer and a doctor teamed up). They review cases to make sure that the person is still disabled according to their terms. Keep up with doctor appoints, be honest, and when the time comes for your review, hire a lawyer to help you through it. If you do have more conditions preventing you from working, and those conditions are on their list of disabling conditions, then it can only help your case.


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## Wildmtnhoney

So my update is I was denied, not because I'm not disabled NOW, but because the last time I qualified with enough credits for SSDI was a long time ago and I failed to provide enough medical records that showed I was severely disabled back then, too.  So I'm calling MORE dr's, and gathering old records for my appeal.


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## afidz

Have you hired a lawyer? At what stage were you denied?


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## Wildmtnhoney

No, I haven't retained a lawyer yet.  

This was my first application.  But I'm a bit confused - I thought you had to go through a first appeal, then another to be seen before a judge?  but the paperwork I got seemed to say that this appeal would be to prepare to be seen by an the judge?


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## afidz

Yes, going before a judge is the 3rd stage. Almost everyone gets denied the first time, and a lot after teh second. I would hire a lawyer now. It doesn't matter if you hire them now or later, you will pay the same amount so you mind as well hire them now and make sure your case is being built the right way


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## duh panda

Wildmtnhoney said:


> No, I haven't retained a lawyer yet.
> 
> This was my first application.  But I'm a bit confused - I thought you had to go through a first appeal, then another to be seen before a judge?  but the paperwork I got seemed to say that this appeal would be to prepare to be seen by an the judge?


Disability processes differ according to what state you're in. 

Colorado eliminated first appeal bumping things directly to the court process, but in the mean time they hold a reconsideration review, then appeals hearing, then finally you'd be seen by a judge if they haven't ran you off with the legal hoops. I'm not sure what the reasoning is for it, but guess someone figured this would be a good way to manage the state's applicants?? 

I found it beneficial following denial in CO and before the reconsideration review had a chance to occur to have my GI write a letter and submit it on behalf of my case outlining her experience of how the disease had impacted my life resulting in inability to maintain simple responsibilities let alone work at the level necessary to disqualify me. Since it's not your GI but a general dr. who reviews case info and medical charts/ histories it can be helpful to have "witness" letters from personal docs. if they know you, have been involved in your disease management for a significant period of time, and are willing to vouch for your need.


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## peluchde

I started My FMLA a few weeks ago.  The Entiviyo isn't working, yet.  I'm exhausted and usually in the bathroom.  I'm having frequent UTI's and I'm just miserable.  I'm going to apply for SS Disability, but I was overwhelmed just filling out the papers for my insurance, so there's no way I can do those.  After 21 years of teaching, I never thought it would end this way.  My doctor knows I'm suffering, but then he suggests maybe they could just let you do some clerical work!  I couldn't even manage that now.  I just had my 60th birthday and i feel like crap.


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## Jennifer

I'm sorry peluchde.  Can you go to your local Social Services office and ask for help filling out the forms? They have representatives there who can help you with the forms. You could also get a lawyer and they will help you with the forms as well. They don't get paid until you do and they only take a small portion of your winnings.


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## peluchde

Thanks Jennifer, I thought by letting the lawyer handle most of it, I would have some relief.  Everyone tells me that I will more than likely be turned down the first time.  Is that the case with everyone?  I have Crohn's and urology problems combined and so my time in the bathroom feels like half my life.  Teaching 3rd grade is impossible when you can't use the bathroom.  I hope I don't have a hard time with this process, too.


----------



## lookame

So I'm starting to think applying for disability might be a good idea. Since having my daughter a little over a year ago I haven't been able to do much. I had 3 infections right after her birth and the antibiotics lead to cdiff infection around Feb and another cdiff infection I'm battling now. Along the way I've had 2 rounds of iron infusions. Now hospitalizations since her birth but it's been rough going. My husband is working 2 jobs to try to make ends meet yet he's still over drawing his account. My ex stopped paying child support 2 months ago as well. We're in a really tough spot right now.

I'm 28 yrs old, have had crohns for 5 years, about 98 lbs and hospitalized once. I'd probably get denied for ssi (ssdi?) Disease not "severe" enough...


----------



## ginar695

Hi, I'm wondering if anyone has had any success being on long-term disability for Crohn's Disease through their employer and how long they have been on disability for?  Working for me is becoming quite difficult and I know I have to make a decision regarding my work status but I also know how lengthy of a process this might be, although I know it will be worth it to be able to get this disease under control.  TIA


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## peluchde

I am on FMLA right now and have just sent in the papers for my long term disability insurance.  I hope to hear something from them soon.  I, too, need to get back my life and my job as a teacher was not conducive to getting well.  Good luck to you.


----------



## pink&green

peluchde said:


> I am on FMLA right now and have just sent in the papers for my long term disability insurance.  I hope to hear something from them soon.  I, too, need to get back my life and my job as a teacher was not conducive to getting well.  Good luck to you.


I know some LTD Insurance require you to apply for SSDI so they won't have to pay the benefits. Keep us posted.


----------



## peluchde

I just contacted a disability attorney and he took all the information.  I guess I'm applying for SS disability, too.  So much paperwork!


----------



## TrustingNHim

Jennifer said:


> Husband says you can apply for unemployment online and that its faster that way.
> 
> I receive SSI for Crohn's and don't work. If anyone needs help with applying for SSI I can help answer questions.


I do not know much about SSI.  Is it available for children or just adults?  Does it help with costs of medical care?
Thanks in advance


----------



## my little penguin

Trust 
Ssi is available for kids but it's based on the parents financial assets 
There is medical insurance in most states for kids with crohns
It doesn't take into account parents income and can serve as a secondary insurance for kids through the state
But......
State Medicaid limits where you can take your kiddo
It will not cover out of state second opinions
Limits amount of drugs 
And lots of paperwork


----------



## my little penguin

One more thing
Get fmla if you work full time.
The Gi will fill it out your companies paperwork
Comes in handy for testing appts and hospital stays


----------



## sriramkaimal

hi dears,
my name is sriram with from India .living Crohn's with last seven years now a days steroids and mesalamine tablets are not working .looking for better treatment (costly).
unemployment and financial probs .any one can help me in unemployment


----------



## afidz

I am unfamiliar with Indian law, but I am sorry you are having problems. My best to you


----------



## peluchde

So now I've been out of work since 9/28/15.  I've had to use all my sick time and have had to use the "sick bank" at work, so I've been able to pay my bills. My LTD has been approved as of 12/24,  but I won't get my first check until 1/24.  They will cut my sick bank benefits on 12/24, so things are going to be very tight next month.  Just when all the holiday bills come.  I'm still on Entiviyo, and headed back to the Mayo Clinic Jan 4th for another Double Balloon Enterography.  I can't do a pillcam anymore because it doesn't want to come out!  MRI's don't show ulceration and I believe that is what's causing my daily pain.  My doctor wants me to take Miralex daily (up to 6 times) as constipation is my biggest problem.  Now I can hardly leave the house because of diarrhea! Backed it down to twice a day.  Told me not to take Bentyl or Levsin for the pain as they both contribute to constipation.   "Just take Tylenol for the pain."  Ha, ha! You know he doesn't have Crohn's


----------



## Ali29

Can anyone describe what happens when you go before a SS Judge?  Do I need to bring my own paperwork with my notes of the last 3 years, etc.  What kind of questions should I expect?  I want to be prepared and have everything they might as for as I keep all my records which is about a foot tall.

Thank you!


----------



## afidz

Have you hired a lawyer Ali?  If Yoy hired a lawyer,  then you shouldn't need anything but best to contact them. If you haven't,  I would hire one tomorrow so they can postpone your hearing and have time to prepare. You shouldn't go to a heading without a lawyer or advocate,  they will take advantage of you and ask you questions they know you don't know how to answer.  I don't remember your situation, that's why I brought up both sides.  Good luck!


----------



## sriramkaimal

afidz said:


> I am unfamiliar with Indian law, but I am sorry you are having problems. My best to you


IN INDIA THERE IS NO ACTIVE GROUP FOR Crohn's. MED INSURANCE ALSO NOT COVERING THIS DISESES . NO SUPPORT FROM GOVERNMENT ,LOOKING FOR A LOW INCOM ONLINE JOB THAT ALSO HELPING ME VERY MUCH,
EXPECTING MIRACLE ON THIS XMAS DAY:rosette1:


----------



## Ali29

Thanks Adfiz,  I do have an Attorney and we will be discussing things next month.  I was hoping from patient standpoint if there were any pointers.  I'm hoping my Attorney is good with the Judge but you never know.  I know they are there to advocate for me but hoped anyone might have any pointers from their experience.

Obviously, this is going to be a stressful day.

Thanks for your help!


----------



## afidz

That's good that you have a lawyer. Don't talk unless you are asked to.  Let your lawyer do all of the talking.  When you are asked questions,  make your answers as short as possible,  you don't want to accidentally incriminate yourself.


----------



## nogutsnoglory

My lawyer told me we will meet an hour before the hearing and he will rehearse me. I'm gonna be so drained, why can't we rehearse on another day.


----------



## afidz

I forgot to tell you guys,  the SSA remanded my case! They found the judge's decision to be erroneous. I have to go to one of their doctors again on the 4th and then I will be scheduled for another hearing after that. 

NGNG when is your hearing?


----------



## nogutsnoglory

No word yet but I'm hoping by the spring. This process is crazy.


----------



## afidz

It is. I have been at it for almost 4 years. I think it will be 4 years in April


----------



## nogutsnoglory

Totally unfair.


----------



## Jennifer

I'm currently under a medical review to see if I'm still disabled enough in Social Securities eyes to continue receiving SSI. I'm filling out the paperwork right now. I'm not looking forward to this.


----------



## fuzzy butterfly

Hi all I dread to think about if the time comes I need to go on disability here. You have to be practically dead these days to get it. I feel so sorry that we have to go through all this it's a nightmare. Wish you all the best of luck


----------



## ccsysto

I'm back (unfortunately)...after resection in 2013 things are acting up again and another resection scheduled 2/5/16. I'm thinking disability is around the corner, fortunately I paid for it through our group benefit plan through The Hartford. I've read several posts about SSI, but has anyone dealt with disability through work maybe even with The Hartford? Did you get approved the first time, did you use a lawyer and at what point did you hire them?


----------



## fuzzy butterfly

So sorry you are back. Welcome back though.. I am afraid that I don't know much about the system over there, but I do wish you the best of luck with it all. Sending support n hugs and


----------



## jkd1111

*Applying and getting approved for SSDI*

Please Please Please if you think you need to apply for SSDI, do so.  I'm here to tell you, you can get approved first time through.  Yep, it happened.  Shocked the living you know what out of me but it happened.  My private LTD insurance required me to apply and go through the company they contracted with to be the SSDI advocates.   I originally applied back in June 2015 (on my own and online) and went with the advocate company in December 2015.  Got a call this last Thursday I'm approved.  Now just waiting to see what is what and where I go from here.  I do think that I was pretty lucky with the Disability Determination guy here in Wyoming.  He was very nice and we worked well together.   Not that that helped the outcome, but it sure made the process better and easier as far as I'm concerned.  Good luck to all.  Please don't give up.   Attorneys and advocates can be your best friend through this.


----------



## fuzzy butterfly

Hi jkd so glad you have been approved, hope all goes smoothly for you now. Best wishes


----------



## itsmebabs

I'm so sorry for all those who are having difficulty getting SSDI with this dreaded disease. What do you do if one's self employed without making any money for the last 41/2years. Didn't want to apply because I kept thinking I won't need it and I'd be giving up my dream but realize I'm too sick to continue this path and financially can't go on like this. Anyone know a great lawyer in New York?
Thanks really appreciate any help!:sign0085:


----------



## ccsysto

Jkd1111-Ar should in any meds for Crohn's, have you had any surgeries? I'm happy for you and your quick SSDI approval.


----------



## jkd1111

ccsysto said:


> Jkd1111-Ar should in any meds for Crohn's, have you had any surgeries? I'm happy for you and your quick SSDI approval.


Hi ccsysto, Hmmmm, meds where do I start.  I was diagnosed with Crohn's about 40 years ago so the list is long....6MP, Flagyl, Imuran  (I'm sure there were others, but I can't recall them at the moment)  and in the last  10 years or so, Remicade, Humira and currently on Cimzia.  I'm also on a high dosage of prednisone (which we have been trying to taper off now for the past 8 months and not having much success) for the pyoderma that I currently have.   Gotta love this stuff!

Surgeries....right colectomy when I was diagnosed and about 6 surgeries for the perianal fistula which has not cleared up in any way shape or form.... oh well.

Yeah, I was totally shocked at the "rapid" decision (only took 8 mos) for the SSDI.  I was totally prepared to go the long haul for it as there is no cure for this stuff and as we all know we never get any better.   At least now I can stop stressing about this which just may help.


----------



## itsmebabs

I am so very happy for those who were able to get SSD and so sad for those having difficulties. 

Jennifer or someone please help me! I'm beside myself and need help. It has not been easy finding a good lawyer here in NY and was wondering PLEASE someone tell me what the doctor said to get them SSD for this horrible disease. I am besides myself and so sick and tired and have no one to help but all of you. I guess I will somehow get forms and need your help in filling out. I came from the doctor yesterday since I haven't eaten in over 6 months and just able to drink Peptamen 1.5 he feels I'm eligible but in contacting CCFA the person there said not eating is not enough and neither is pain because people still can work. I'm a mess and need help. 
Please someone help!
Thanks so much!
Wishing you all the best day possible and hopefully one day I can help you all.
Thank You from the bottom of my heart.


----------



## fuzzy butterfly

Hi babs. Im so so sorry you are stuggling so...
Im not in the US. So i cant advise you there. Just really want to send big hugs your way :hug:. It can be as hard here in the UK to get help to. I dread when that time comes . So i really hope that someone on here can help you know what to do next. 
Much love Mandy


----------



## Lisa

Babs - what part of NY are you in? Feel free to message me if you don't want to post it...my brother is going through the process himself, and it is verrrrrry slow....



itsmebabs said:


> I am so very happy for those who were able to get SSD and so sad for those having difficulties.
> 
> Jennifer or someone please help me! I'm beside myself and need help. It has not been easy finding a good lawyer here in NY and was wondering PLEASE someone tell me what the doctor said to get them SSD for this horrible disease. I am besides myself and so sick and tired and have no one to help but all of you. I guess I will somehow get forms and need your help in filling out. I came from the doctor yesterday since I haven't eaten in over 6 months and just able to drink Peptamen 1.5 he feels I'm eligible but in contacting CCFA the person there said not eating is not enough and neither is pain because people still can work. I'm a mess and need help.
> Please someone help!
> Thanks so much!
> Wishing you all the best day possible and hopefully one day I can help you all.
> Thank You from the bottom of my heart.


----------



## DougUte

Babs - While my Crohn's is not severe enough to warrant my being on disability, I have had experience with getting disability for my wife. You can feel free to work with me. Either in this thread or in private messages. However you prefer it. I would definitely get a lawyer who specializes in Social Security Disability.


----------



## Jennifer

itsmebabs said:


> I am so very happy for those who were able to get SSD and so sad for those having difficulties.
> 
> Jennifer or someone please help me! I'm beside myself and need help. It has not been easy finding a good lawyer here in NY and was wondering PLEASE someone tell me what the doctor said to get them SSD for this horrible disease. I am besides myself and so sick and tired and have no one to help but all of you. I guess I will somehow get forms and need your help in filling out. I came from the doctor yesterday since I haven't eaten in over 6 months and just able to drink Peptamen 1.5 he feels I'm eligible but in contacting CCFA the person there said not eating is not enough and neither is pain because people still can work. I'm a mess and need help.
> Please someone help!
> Thanks so much!
> Wishing you all the best day possible and hopefully one day I can help you all.
> Thank You from the bottom of my heart.


I'm surprised that someone from the CCFA would say that. Was it just a random person from their forum or an actual member from the CCFA? While in a way they may have a point since it can be really difficult to be approved, it's a bit harsh and not really helpful. 

Are you able to go to your local Social Services office? They have people there who can help you fill out the forms and help you through the process. I forget what their title is but Social Services will know and can help you set up an appointment. I'm not sure if you need to be denied first to see them but it's worth a shot. My husband has been denied twice now and is currently waiting for a hearing with a judge (Social Services told us about this service a little late in the game after I filled out all of his paperwork).

When filling out the forms you want to think about your worst days possible. Sometimes we have days that aren't as bad and sometimes we go into remission but that doesn't mean those rough days won't return or that a flare isn't around the corner since this disease is so unpredictable. SSI and SSDI help us get back on our feet and hopefully be able to take care of ourselves in the future once our disease is better under control. 

Be sure to apply as soon as possible though because it takes a while to fill out the forms and even longer to get a decision. If you're denied then appeal immediately. Don't get discouraged. If you're unable to work then see if your local Social Services offers General Assistance/Cash Aid to help you out financially if you don't currently have state disability. If you need help with any questions on the form then let us know but hopefully you'll find a lawyer or other representative from Social Services who can help you fill out the forms.


----------



## Momoftwo

What if your young, never worked, almost 18? Is there anything out there to help these teens with this horrible disease who are not in remission? Still covered on parents insurance for now.


----------



## itsmebabs

Sorry I haven't checked email lately but so appreciate your replies.....you have no idea how much! Well actually you do since you're unfortunately the only ones who get it whereby I'm so sorry that we all have to be here. Ummm how do I get in touch with some of you privately? I have brain fog now and apologize.
Please help!
Thanks so much in advance!
Also I'm so sorry I don't know the answer for an 18 year old who hasn't worked but I hope you get an answer.
Looking forward to finding out how to email privately since this is my last hope of anything and can't thank you enough.
Hugs
Babs


----------



## Jennifer

Momoftwo said:


> What if your young, never worked, almost 18? Is there anything out there to help these teens with this horrible disease who are not in remission? Still covered on parents insurance for now.


They can receive SSI (Supplemental Security Income). That's what I've been getting since I was around 14 years old. Apply at your local Social Security office.


----------



## duh panda

Hey babs, 

Sounds like you're pursuing some good avenues to find out what needs to happen in your state. It can take a long time and is frustrating as hell in the process. I waited a year from point of filing and took about 6 months to line everything up for application. It's not a fast process.

The big point in disability is whether or not an applicant could produce sustainable work activity with their disability or not. It's not the easiest thing to prove - but a supportive doctor and well-documented information will help. Capability of not being able to provide sustainable work is what anyone is arguing in disability applications. 

For me, I'd been working with my dr. 8 years since I was still in high school. I've heard impact of a dr. letter or witness letters offer more impact the longer/ better they know you. There were multiple hospitalizations throughout college - one of the criteria for Crohn's as a disability. I've also been steroid dependent majority of the time since diagnosis - clinically one can't be in remission while on steroids, another qualifier for disability. There are several main points that can make Crohn's a disability - check that list and see what applies, then focus there to support your claim. 

My dr. in addition to pointing out the above and additional disease complications, essentially wrote that work would be detrimental to my already fragile health, increase my risk of infections which I'd already struggled with, steroid dependency w/ inability to taper, joint issues limited mobility, and long-term complications resulted in extensive malnutrition - low energy, fatigue, and exhaustion that would limit any work activities, including basic tasks. 

Those I live with also wrote letters to help document how, for me, historically any work ended in hospitalizations and could not be sustained before seeing health deteriorate. They also wrote as witnesses to the amount of work and effort that goes into managing symptoms/ disease on a daily basis and attest to the more ambiguous symptoms like fatigue and exhaustion.

Make copies of anything sent in addition to required application material. Things get lost. 

Key for me was addressing whether or not I could manage any form of sustainable work including work from home options, not just work itself, and then explaining my case and experience of Crohn's in a way that focused on that.

Best of luck and hang in there. It's not an easy fight, or a short one usually, but you got this!


----------



## DougUte

itsmebabs said:


> Looking forward to finding out how to email privately since this is my last hope of anything and can't thank you enough.
> Hugs
> Babs


Hi Babs. For a private message, just go to the top of your screen. In the top right corner is a link to private message.


----------



## itsmebabs

Can't thank you all enough for the info. Just don't know if my mom and I have the strength and fortitude to fight so hard since it's been an awful battle for the last 25 years and we've always been so hopeful until now. We never gave up and fought tooth and nail for everything but now we are exhausted. Also lost my dad to cancer between my battle with this disease. Feel like my dreams are all gone.I don't know what I would do without all your help. Having a really bad day today.
Bless you all and there are no words to express my gratitude.


----------



## Momoftwo

Jennifer, I guess ssi varies from state to state? Do I need to get dr papers before applying?


----------



## Rylan

My girlfriend who is 23 only has a little bit of work history, she was 18 when diagnosed with CD and was working at her first and only job when she had to quit because of her Crohn's. She has since not worked and is just now finally going to apply for disability (her mom was too proud to let her apply for this in the past). Anyone have any advice on if she should be applying for SSI or SSDI?


----------



## Jennifer

Momoftwo said:


> Jennifer, I guess ssi varies from state to state? Do I need to get dr papers before applying?



No you don't. Your child's doctor will have paperwork to fill out but you bring it to them once you get the paperwork from Social Security. Start by getting the paperwork and look it over. After everything gets sent in then your child will have a mental examination with a doctor of Social Security's choice and they will have their own doctors look over their medical history. It's a long process but well worth it plus they'll qualify for Medicaid so no more copays even with the other insurance.



Rylan said:


> My girlfriend who is 23 only has a little bit of work history, she was 18 when diagnosed with CD and was working at her first and only job when she had to quit because of her Crohn's. She has since not worked and is just now finally going to apply for disability (her mom was too proud to let her apply for this in the past). Anyone have any advice on if she should be applying for SSI or SSDI?


I honestly don't know how long ago she would have had to work to qualify for SSDI but it is possible to apply for both. If she doesn't qualify for SSDI then that's fine because she'll have SSI to fall back on. I'd just start the paperwork for both.


----------



## Jimmy Lee

:sign0085:Wow! I thought I was overwhelmed BEFORE I started reading all of these testimonials. I know of no other way to ask for advice except state what I'm going through. It's hard for me because so many of you have been through hell and back. My heart aches for you. But even though I've not had any surgeries related to Crohn's or UC, I'm at wits end.

I was diagnosed two years ago with Crohn's after begging a friend to do a colonoscopy. I explained what I was going through and even though I didn't live in that town anymore, he agreed it was necessary. My colon was picture perfect of what you DON'T want it to look like. I have dealt with chronic diarrhea for years...nobody told me it was not normal to go to the bathroom 20x a day. I haven't known what a normal bowel movement looks like for years. He diagnosed me with Crohn's disease and ulcerative colitis. It took months to get in to my new GI. In the meantime I was rushed to the ED with a fever of 105 degrees, fatigue, horrible diarrhea, and dehydration and stomach pain. After discharge, I saw my new doctor. He listened very intently and immediately prescribed Humira every other week. He also put me on 40mg. of prednisone and Apriso 4caps daily. I was already taking Oxycodone for an unbelievable pain in the ass, no pun intended. Long story short on that one is I finally had to go to Duke University Hospital and have a specialist examine me and proclaim I had an anal fissure (that should have clearly been visible to the other doctors, EM included, who had examined me. I'm the guy who wrote the post about the doctor who walked in and looked me in the eyes and said, "There's nothing I can do for you.)

I realize this is rambling. I'm still on oxycodone for pain, have upped the Humira to one shot a week because my levels were too low, according to Prometheus labs, tapered off of the prednisone twice (first time adrenal glands refused to produce the expected 7.5 mg of cortisone necessary to stave off joint pain), and yet the diarrhea is worse now than ever. I have heartburn so bad I wake up in the night. I went from Prilosec to Nexium to no avail. I'm having strange rashes and raised places on different parts of my body. One day my tongue swelled up on one side so badly that I had a lisp! I got scared and went to an intermediate clinic. (The doctor said "your tongue isn't swollen! lmao) It did it again about two weeks later on the OTHER side. Go figure. I'm so tired I can hardly make it throught the day. I've gone through two intermittent LOA's and have exhausted all of my time and vacation. I'm 60 years old and for the last two years my W2 reflects $14,900 each year! That's how much work I've missed. I have major anxiety disorder, and I take Xanax 1mg 4x day and 1 at night. My psychiatrist has worked with me since 1993. I see a counselor where I now live about every two weeks. It's gotten to the point that I either cannot go into work due to the cramping and diarrhea, or when I do, I can make it perhaps 1/2 day. The people I work with don't understand why I must go to the bathroom all the time. They question me. I wish it were not so. 

I've finally realized that I need to apply for ss disability. I cannot go on like this. If I have no job, I have no insurance, and I cease to exist! I don't qualify for Medicare yet. I have not had the surgeries some of you have, but it's very real. I told my doctor that maybe he had made a mistake. He started laughing and said, "Jimmy, I know you don't want to hear it, but you DEFINITELY HAVE IT, and a particularly nasty and stubborn case." And the Prometheus lab work proved it. I'm at the point I want to give up. I don't feel like I can fight the system on all fronts. People really don't understand unless they have the same thing. I don't know how I will survive with no income, but I'm told by my lawyer that I make too much to qualify. Just a kind word from someone, any encouragement possible will help. I've applied for another job which would require my staying in a position for hours at a time. I have no idea how I could do that job!!! So sorry this rambles and is so long. I'm going to get my lawyer to apply for me. But from all I've read, I can expect a long journey.


----------



## Kit

Thanks for sharing your story.  Please find a lawyer that specializes in SSI and SSDI.  I don't know much about it, but I would think that finding a lawyer that can help with the paperwork and give sound advise would be wise.  Here is a website for the social security admin that might help.  https://www.ssa.gov/disabilityssi/   here is the site on there that tells about the difference between the two.  https://www.ssa.gov/planners/disability/    I hope this helps.


----------



## Jimmy Lee

Kit said:


> Thanks for sharing your story.  Please find a lawyer that specializes in SSI and SSDI.  I don't know much about it, but I would think that finding a lawyer that can help with the paperwork and give sound advise would be wise.  Here is a website for the social security admin that might help.  https://www.ssa.gov/disabilityssi/   here is the site on there that tells about the difference between the two.  https://www.ssa.gov/planners/disability/    I hope this helps.


Thank you so much just for reading my diatribe! I will follow links. Here's what's so weird: Today is absolutely gorgeous. It's my day off. I feel great. Now I feel guilty, like "why am I seeking disability?" But brain says, "and you think this is going to last???"


----------



## itsmebabs

I am so sorry what you are going through I too am experiencing a terrible time and scared out of my wits. First time I don't know what's going on with me and losing hope. I too think if I have a few hours that I can go to a movie then I can't get SSD I may have problems getting it anyways but scared if this continues as it has I will not be able to exist. I'm impressed that you are still working Bless you!


----------



## Jennifer

Jimmy Lee said:


> Thank you so much just for reading my diatribe! I will follow links. Here's what's so weird: Today is absolutely gorgeous. It's my day off. I feel great. Now I feel guilty, like "why am I seeking disability?" But brain says, "and you think this is going to last???"


Crohn's does have it's ups and downs. You could go into remission but you can never predict a flare. I'd continue with trying for disability until you're in a stable remission and feel that you can go back to work later on. Sometimes we have good days during a flare but the disease itself is very unpredictable. There's nothing to feel guilty about.


----------



## Jacksik

itsmebabs said:


> I am so very happy for those who were able to get SSD and so sad for those having difficulties.
> 
> Jennifer or someone please help me! I'm beside myself and need help. It has not been easy finding a good lawyer here in NY and was wondering PLEASE someone tell me what the doctor said to get them SSD for this horrible disease. I am besides myself and so sick and tired and have no one to help but all of you. I guess I will somehow get forms and need your help in filling out. I came from the doctor yesterday since I haven't eaten in over 6 months and just able to drink Peptamen 1.5 he feels I'm eligible but in contacting CCFA the person there said not eating is not enough and neither is pain because people still can work. I'm a mess and need help.
> Please someone help!
> Thanks so much!
> Wishing you all the best day possible and hopefully one day I can help you all.
> Thank You from the bottom of my heart.


Call Berger and Green..be prepared to wait 14 to 18months


----------



## duh panda

I wanted to share something positive with my experience regarding disability.

The disability process isn't easy, to put it lightly. It is long, it is stressful, often those who need it are experiencing a level of illness that makes keeping up with jumping through all the hoops downright difficult, if not impossible without additional assistance and/ or legal aid. The struggle doesn't stop just because you get approved.

This last year has been a struggle for me being on disability. I think all of us can probably share in the sentiment that none of us planned on needing to apply for, let alone be receiving disability assistance. The social stigmas attached run deep. At first, I thought I was broken, my sense of self-worth had been completely demolished by the time I was finally approved. 

It's challenging - knowing something is needed but wishing it wasn't. It is exhausting coming face to face against the stigmas. The fight doesn't stop with approval. 

I have learned disability is not a symbol of inadequacy or lack of worth, if anything to me, it is a symbol of the diversity that exists within humanity - and the differing nature of everyone's needs. Disability helps me meet my needs, it does not limit my worth or do the work for me. It is not a free ticket. 

I wanted to share with the group what's given me some peace of mind regarding my disabled status. The above sentiment has revived me in many ways. I never imagined I would still be needing disability now. I thought I would be off of it within 6 months. I thought I could not give back, could not engage, could not participate in my community like I wished as long as I was on disability - not true. My ability to participate in life and my local community has increased since receiving disability. It has not devalued me, but given me an opportunity to exercise my full worth without exhausting my diverse limits. I hope this view might give those who are wavering the courage to move forward in the process, and those on disability the perspective that disability is not a negative, rather an opportunity.


----------



## Kit

duh panda said:


> I wanted to share something positive with my experience regarding disability.
> 
> I have learned disability is not a symbol of inadequacy or lack of worth, if anything to me, it is a symbol of the diversity that exists within humanity - and the differing nature of everyone's needs. Disability helps me meet my needs, it does not limit my worth or do the work for me. It is not a free ticket.
> 
> I wanted to share with the group what's given me some peace of mind regarding my disabled status. The above sentiment has revived me in many ways. I never imagined I would still be needing disability now. I thought I would be off of it within 6 months. I thought I could not give back, could not engage, could not participate in my community like I wished as long as I was on disability - not true. My ability to participate in life and my local community has increased since receiving disability. It has not devalued me, but given me an opportunity to exercise my full worth without exhausting my diverse limits. I hope this view might give those who are wavering the courage to move forward in the process, and those on disability the perspective that disability is not a negative, rather an opportunity.


Thank you so much for sharing! :hug:


----------



## valb

Jimmy Lee said:


> Thank you so much just for reading my diatribe! I will follow links. Here's what's so weird: Today is absolutely gorgeous. It's my day off. I feel great. Now I feel guilty, like "why am I seeking disability?" But brain says, "and you think this is going to last???"


I totally get everything you said!!!  Crohns does have it's ups and downs for sure.  Today I feel fantastic and energetic and normal but just a few months ago I felt like I was dying and in so much pain!  Crying everyday and not able to move or take care of my children properly.  Take full advantage of the time you feel great!!!  It can and will get better.  Just believe that.  It is not easy at all.  Diagnosed 11 yrs ago and it has been a bumpy road!!  Take care!!


----------



## Ann Morgan

Ok. I have not been on this site for a while, so I may be asking this question in the wrong place.

I started receiving SSD on January 10, 2013. I received my 3 year SSD Disability Update Short Form on February 22nd, 2016. I mailed this form to SSD on February 23rd, 2016.

Now what ?  What happens next ?  And how long do I gave to wait to hear from SSD again ?

I have a cousin in Minnesota who just fills out the Short Form and she is done. No long forms because she has terrible Juvenile Diabetes Type 1. Sometimes she passes out from her diabetes.

But then one of my neighbors says she receives the Long Form. She suffers from a Mental Illness and has been "in the system" since 2003. 

I suffer from Major Depressive Disorder and Anxiety and Ulcerative Colitis ( etc ). 

Would it be OK if I called the 1-800 phone number for SSD to find out the status of my Disability Update ?  Or should I never call them ?

Thank you for listening. 
I am crying and in a panic, thinking the worst, that they will discontinue my benefits and I will be homeless.


----------



## duh panda

Ann Morgan said:


> Ok. I have not been on this site for a while, so I may be asking this question in the wrong place.
> 
> I started receiving SSD on January 10, 2013. I received my 3 year SSD Disability Update Short Form on February 22nd, 2016. I mailed this form to SSD on February 23rd, 2016.
> 
> Now what ?  What happens next ?  And how long do I gave to wait to hear from SSD again ?
> 
> I have a cousin in Minnesota who just fills out the Short Form and she is done. No long forms because she has terrible Juvenile Diabetes Type 1. Sometimes she passes out from her diabetes.
> 
> But then one of my neighbors says she receives the Long Form. She suffers from a Mental Illness and has been "in the system" since 2003.
> 
> I suffer from Major Depressive Disorder and Anxiety and Ulcerative Colitis ( etc ).
> 
> Would it be OK if I called the 1-800 phone number for SSD to find out the status of my Disability Update ?  Or should I never call them ?
> 
> Thank you for listening.
> I am crying and in a panic, thinking the worst, that they will discontinue my benefits and I will be homeless.


Good to see you back around here Ann Morgan. I hope the panic and anxiety over waiting on the process to move forward has eased. I've wondered these same questions myself since being approved - how the update process works/ functions, etc. and look forward to (hopefully) seeing someone share their first-hand knowledge or experience. 

I would imagine you would be fine calling to check the status of your paperwork. No need to give whoever is on the other end personal information about the case, just that you are verifying that the papers you sent in have been received and that you would like an update on what you can expect regarding the update form and when to contact SSD again in case you do not hear anything for a while.


----------



## Ann Morgan

Panda : I DID call the 1-800 phone number the other day just to verify that they received my Disability Update Form ( the Short Form ).  They did receive it and it is being processed. Just a warning for anyone who wants to call the SSD 1-800 phone number.......I was on hold for 50 minutes before I got to talk to them !  Yikes. 

Now I guess I just have to wait. Saying that I have anxiety about this process is an understatement, I am fearful that they will take my benefits away.

Thanks for listening.


----------



## Ann Morgan

duh panda said:


> I wanted to share something positive with my experience regarding disability.
> 
> The disability process isn't easy, to put it lightly. It is long, it is stressful, often those who need it are experiencing a level of illness that makes keeping up with jumping through all the hoops downright difficult, if not impossible without additional assistance and/ or legal aid. The struggle doesn't stop just because you get approved.
> 
> This last year has been a struggle for me being on disability. I think all of us can probably share in the sentiment that none of us planned on needing to apply for, let alone be receiving disability assistance. The social stigmas attached run deep. At first, I thought I was broken, my sense of self-worth had been completely demolished by the time I was finally approved.
> 
> It's challenging - knowing something is needed but wishing it wasn't. It is exhausting coming face to face against the stigmas. The fight doesn't stop with approval.
> 
> I have learned disability is not a symbol of inadequacy or lack of worth, if anything to me, it is a symbol of the diversity that exists within humanity - and the differing nature of everyone's needs. Disability helps me meet my needs, it does not limit my worth or do the work for me. It is not a free ticket.
> 
> I wanted to share with the group what's given me some peace of mind regarding my disabled status. The above sentiment has revived me in many ways. I never imagined I would still be needing disability now. I thought I would be off of it within 6 months. I thought I could not give back, could not engage, could not participate in my community like I wished as long as I was on disability - not true. My ability to participate in life and my local community has increased since receiving disability. It has not devalued me, but given me an opportunity to exercise my full worth without exhausting my diverse limits. I hope this view might give those who are wavering the courage to move forward in the process, and those on disability the perspective that disability is not a negative, rather an opportunity.


I almost cried when I read this, as I have been struggling for a while now trying to figure out what to do with my days, weeks, years. There have been many life changes for me during the past 11 years. I need to use those experiences to my advantage somehow, instead of seeing them as a roadblock........easy to say this, but way harder to put that into action. Thanks for listening.


----------



## CD mom

This is such a great discussion. My son was diagnosed at 8 y/o. He is 24 and has been on SSD since June 2015. He was approved within 45 days of his application. He met the criteria as described by Social Security. This website helped us to clarify what we needed to include in the questionaire about his daily activities etc. Also we were sure to include ALL the GI docs/surgeons he has been treated by. Mayo Clinic was stellar in their response and inclusive of complications he has suffered: anemia, arthritis, depression, PTSD, anxiety, low albumin levels, difficulty with using hands and walking due to arthritis, need for TPN due to malnutrition, accommodations required at school and multiple school and employment fails due to health issues. Inability to drive due to illness. http://www.ssdrc.com/crohns-disease.html
I hope this helps.


----------



## Jennifer

I still haven't gotten a decision from Social Security on whether or not they think I'm still disabled but I did receive a letter saying that they are letting Social Services decide my case. I had to fill out the Adult Functionality report and have my husband fill out the third party report. Sent off the completed forms in the mail today. My doctor told me that they requested all of my medical information recently so hopefully I'll get a decision soon. I'm not sure if it's better or worse for Social Services to make the decision than Social Security but I'm trying to not stress about it too much because there's nothing I can do about it right now. I do have a lawyer I can contact in case my SSI does get taken away.

For those who don't know, Social Security randomly reviews people's cases to check and see if you still qualify for SSI and SSDI. I'm up for review right now and have been since January of this year.


----------



## Ann Morgan

I mailed my 3 year review paperwork to SSD in February. It is being processed at this time. This is my first review.


----------



## Ann Morgan

I sure hope that the Social Security Disability people make their decision to continue my benefits based on the Short Form that I mailed to them. If they send me that Long Form and if I have to collect all of my medical records I will just be a mess emotionally. I had a Law Firm doing all of the work for me when I first applied for SSD in 2011. It took 21 months to get a hearing before a SSD judge. The decision was in my favor and I also received 2 years back-pay and I qualified for Medicare right away. Of course my Law Firm collected a good chuck of money for representing me. But I cannot afford a lawyer this time around. I just keep looking at my checking account at the end of every month now to make sure my benefits are still deposited.


----------



## tired and sick

Please help, I have had Crohn's since I was 30 years old,or at least diagnosed then.  I am now 59 and have been a teacher.  I am so exhausted now, can't not leave the classroom to go to the RR.  Sick and tired. B12 bottomed out.  Trying for disability now.  Have forced my self to work for many years. Can't do it any more.  I have had no surgeries.  Do I still qualify for Disability.  Any information would be helpful!


----------



## Kit

tired and sick said:


> Please help, I have had Crohn's since I was 30 years old,or at least diagnosed then.  I am now 59 and have been a teacher.  I am so exhausted now, can't not leave the classroom to go to the RR.  Sick and tired. B12 bottomed out.  Trying for disability now.  Have forced my self to work for many years. Can't do it any more.  I have had no surgeries.  Do I still qualify for Disability.  Any information would be helpful!



I am soo sorry you are having to deal with this!  Here is the Social Security Disability Site :  https://www.ssa.gov/disabilityssi/     I have not applied myself for because I don't feel like I have enough symptoms/medical evidence to apply.  After reading this site it seems like getting a Social Security Disability Attorney is a good way to go.  At least find one that will consult with you for a small/no fee.  Someone posted a few posts up a link to Filing for Social Security Disability or SSI with Crohn's Disease. If you have paid into the Social Security System then you should be able to apply for Social  Security Disability.    

I hope this helps you to get started and reading some of the posts may help as well.


----------



## Jennifer

tired and sick said:


> Please help, I have had Crohn's since I was 30 years old,or at least diagnosed then.  I am now 59 and have been a teacher.  I am so exhausted now, can't not leave the classroom to go to the RR.  Sick and tired. B12 bottomed out.  Trying for disability now.  Have forced my self to work for many years. Can't do it any more.  I have had no surgeries.  Do I still qualify for Disability.  Any information would be helpful!


Go to your local Social Security office and apply for SSI and SSDI (you should qualify for both). Your local Social Services also offers free help in filling out the forms for Social Security or you can contact a lawyer if you prefer to work with one and you'll only have to pay them a small percentage once you win your case (definitely worth it). If you're unable to work at all right now then you'll want to apply for unemployment or get state disability. Contact your local Social Services if you aren't sure what to do. Good luck and keep us posted.


----------



## DebiM

*Info on disability*

I've been on temp. disability for 3 months & if anyone has info or suggestions or permanent disability as I've heard it can take a long time & there's a lot of red tape.  Any help would be greatly appreciated.


----------



## Jennifer

DebiM said:


> I've been on temp. disability for 3 months & if anyone has info or suggestions or permanent disability as I've heard it can take a long time & there's a lot of red tape.  Any help would be greatly appreciated.


DebiM, the sooner you apply the better. Apply for both SSI and SSDI at your local Social Security office. Having a lawyer can help. Your local Social Services office should have people there who can help you fill out the paperwork. Good luck. If you have any specific questions feel free to ask.


----------



## Marie23

Also please make sure your medical/mental health professionals agree with you about your inability to work. There is a 6 month waiting period before you can receive SSDI benefits. So filing now is good so you will hopefully be approved by the time the 6 months is over. Also use every medical oroblem/disease/syndrome you have when applying.  They all add up to support your claim. Sorry if this was already in this thread. I didn't read them all over again.  Good Luck!


----------



## afidz

My reconsideration hearing is scheduled for next month. I've gone back to work and intend on working as long as I can, but at the time of my unemployment I was truly not able to go to work, so I'm asking for the back pay. This judge is an ass, makes his decisions based off of the weight of the person he us judging against. True story.


----------



## Jennifer

Good luck with the hearing afidz. 


I finished with my mental exam. The lady I saw was really nice. The doctor at the physical exam was all business though so I'm not sure how things will go. Now I play the waiting game. Worst game ever when your only income is on the line.


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## Taysyd1231

Was it really difficult to get SSI? I'm hearing a lot of things about having to get a lawyer or something. I don't have health insurance and I just had to quit my job today because it was making my crohns flare up. I just really need something to work for me because I may be making some hospital trips soon and without any money or coverage of any type I feel like I'm at a dead end.


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## afidz

After almost 5 years... I won. My 2nd hearing was all but 4 minutes long. He said "This is an awful process and I don't wish it on my enemies". He didn't ask about anything, just went off the facts they've had since the last hearing 2 years ago. Sent couldn't he just save me the trouble and grant me disability then? Oh well. It's over now.  Time to move on. I have so much work to do to get to a healthier state.


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## Ann Morgan

On July 18th I received a letter from SSD that said they will not be reviewing my case at this time. I had mailed them their short form on February 22nd. I am very happy about their decision, my anxiety and stress was off the charts for 5 months while I waited for their reply. I started collecting SSD in January 2013, so this was supposed to be my 3 year review. I hope they put my file away for a while, but of course they can do a review whenever they want to. Thanks for listening.


----------



## Ann Morgan

I have a question. Ok, so right now I am 56 years old and have been collecting SSD for 3 years. When I get older will my SSD automatically change to SSI ?  Or would I have to apply for SSI when I get older ?  My sister started collecting her SSI at 63 1/2 years old when she retired from her job.


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## Jennifer

I honestly don't know Ann Morgan. Might need to call SS and ask them. 



I received the decision for my review in the mail yesterday. I'll continue to receive SSI as they felt that I'm still disabled but the doctors also stated that they expect me to improve so I'll go up for review again in July 2018.


----------



## Kit

I have a question if just have Crohn's Disease and technically in remission can you get SSD?  My only symptoms are fatigue in which I got to the point of not being able to perform my job.  Has anyone gotten on SSD with so little medical problems?  Unfortunately my fatigue can't really be documented, it is mostly subjective and what other people see. Just wondering.


----------



## MissLeopard83

Kit said:


> I have a question if just have Crohn's Disease and technically in remission can you get SSD?  My only symptoms are fatigue in which I got to the point of not being able to perform my job.  Has anyone gotten on SSD with so little medical problems?  Unfortunately my fatigue can't really be documented, it is mostly subjective and what other people see. Just wondering.


I have no personal experience with applying for disability income, but I have two family members who have had to go through the process - one with chronic severe back pain and the other with Multiple Sclerosis.  Both had to fight tooth and claw to get approved for income.   The one with back pain has been under review numerous times.  The one with MS just recently received approval after 2 years of denials and appeals.  It is almost 100% certain that you will be denied the first time you apply and will require a lawyer to present your case.  The problem with fatigue is, like you said, subjective.  I know of a doctor in my former clinic who represented a patient with fibromyalgia and wrote a letter confirming her diagnosis.  The problem was, he was the medical director - not her treating doctor - and the case was denied on a basis of lack of medical evidence and treatment.  Fibromyalgia is a tricky diagnosis, anyway, much like Chronic Fatigue Syndrome.

If your Crohn's is in remission, it may be even more difficult to prove that it interferes with your everyday life.  The most important thing is to have a good doctor and a good lawyer on your side willing to work with you.  It may take a few years before you are able to be approved for SSI.


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## afidz

Basically you need to prove that even though you are in remission, your life is still severely impacted by Crohn's making it impossible to hold a job. But you have to find a way to document it. Talk to your doctors about it every time you g go. Discuss treatment options, try them. You need to show that you are doing everything in your power to fix it. You will get denied the first and second time, regardless. It takes 2-3 years to get before a judge. In that time is when you need to be doing all of this. You need to have medical records showing everything. Get a lawyer right away too so they can start building your case from the get go. It's stressful. I just won after 5 years and most would say that I have a clear cut case. My attorney was sure that I was going to win 2 years ago. The proof was all in my medical records. I just had an arrogant  judge. Good luck to you


----------



## Kit

@Afidz and Miss leopard.  Thank you so much for the information.  You both are confirming what I already thought.  I was just gathering information before it would be to late to apply.   I don't think it is worth the hassle and stress to apply.  Fortunately we are doing fine on my husband's salary.    I appreciate you taking time to reply!


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## Sfrank

Are there any other programs out there that can help financially? It has been 2 years since I applied for disability. Any information would be helpful. Thanks


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## Nbca

Hi im new to this is my first time posting here i applied  for ssi i forget how many years ago but i seen the appeals judge in August and she said that she wanted to see the look into the GI part and get my recent medical records cause she only had my records from 2014 and ask me if i can get a letter from my doctor but my doctor just put in my record that i can't work still haven't heard anything its been almost 3 months have this happen to anyone else


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## Nbca

I was diagnosed with ulcerative colitis over 10 years ago but now there thinking it's crohns  been have abscesses and a fistula and now i have a seton going for more test next month to see if i have crohns


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## afidz

Are you managing your case on your own? Once you get to the hearing level, you really need an attorney to manage your case. You might have to start over, to be honest because the appeal after the hearing level is only if the judge made a mistake so it's unlikely that you will be able to get your case to go further. I hate to be the bearer of bad news, but unfortunately that is what is going to happen. Disability is a very complicated involved process, and unless you have a clear cut case that gets approved before hearing level, you really can't do it on your own. There's just so much to know and do


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## afidz

Sfrank check with your agencies. There may be welfare programs that can help


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## Nbca

That was my first time at an hearing im in California and they say if your denied its usually within the first 30 days i still haven't heard anything


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## Nbca

No i don't have a attorney and when i called they say the judge is still viewing my case


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## Nbca

And that was my first appeal hearing


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## MizzSarah

I started receiving disability assistance when I was 18. In Canada you can apply at 18. I had a very different diagnosis than Crohn's but at that point I didn't think I'd be able to work ever. It was crushing for my self-esteem.

Forward a few years I was able to work more but then was diagnosed with Crohn's.  Haven't been able to manage full time work so I've been part time since then. 

Seriously rethinking my career. 

I'm not married so I'm living off of disability along with whatever I make on the side(you have a certain amount you can make additionally in a year). As a single income I can't not work.

Getting sick so young has dramatically changed how I see my future


----------



## Wildmtnhoney

Been away from this thread a long time, but it's time for an update!

Quick catch up: Applied April 2015, denied July 2015 not because I'm not currently disabled, but because my work credits were too old, and I needed to prove I was disabled as far back as 2008.  

There is no reconsideration step in my state, so I have had to wait for a hearing.  I just got the letter with the date - Dec 5th!  I *think* I have enough documentation now to show that things were that bad back then, but either I do or I don't, I'll know soon enough!  Interestingly, the only "witness" that has been called to my hearing is not a Dr to prove I was/am disabled, but someone to verify if someone with my conditions could have been working during that time - I think from what I've read that is typical?  I'm also hoping it's a good sign, though.

Thanks for all in this thread!!


----------



## Wildmtnhoney

Hearing day has arrived.

So torn.  I both do and don't want to "win" - because that feels like such a loss!

If you're the type, I could really use all positive, and even some calming "what will be will be" thoughts/vibes/whatever.


----------



## Wildmtnhoney

No decision today. The judge wants more, older medical records, because my last insured year for SSDI is 2008.


----------



## Kit

Prayers Wildmtnhoney for peace with the decisions and guidance to continue to find medical records.  May you have the energy and motivation to continue on this quest.


----------



## cmack

Hey Wild and MizzSarah,

I have been through a lot too and am looking to secure disability status in Canada. Maybe we can help one another. Even if it is just for emotional support. I tend to think we are, all three of us, in similar situations.

Feel free to pm me any time. I enjoy talking to people. (especially the sick ones)

All the best,

cmack


----------



## Ali29

I feel for everyone who goes through the disability process.  It is a difficult and emotional journey.  Just remember, this too shall pass.  Since I became so ill in 2012, I have kept a daily journal on how I feel, everything from bowels to vomit & pain, accidents.  At times, Drs have asked for food in the journal also.  This helped me with SSI.  I can produce a 5 inch thick folder if anyone asks.  It is a bittersweet journey but you mostly likely have to continue to be reviewed every 2-3 years depending on the judge.  It is difficult but honestly, this Forum has helped me through some very sad days and feel blessed to have these wonderful people to encourage us.

I pray that you find the courage and hope to get through this part of your life.  I am here for you too if you need to talk.  :ghug:


----------



## Lisa

Some words of encouragement for all.....some of you know my younger brother has been going through a LOT health wise.  He had his appeal back on Oct. 16th which was in front of a judge.....then the waiting.....well, this past week he received his decision which was YES - disability benefits finally!!!!  Now he does have to wait for payments to start, but this was a huge relief for him, he can now try to start moving forward with finding his own place to live (he has been back living with our parents for the last 2 years).....


----------



## cmack

Lisa,

That's AWESOME NEWS! So happy for your Bro! Let the good times start to roll again!

all the best to you and yours,

cmack


----------



## Jennifer

Great news Lisa! Very happy for him. 

My husband is waiting for a judge as well. Problem is that SS didn't have all of my husband's medical records. They were missing 2014-16. Basing their decisions off of old records and we have no idea why. They received everything they needed to get his records but just didn't so now we're working with a lawyer cause SS tried to do the hearing next month with a judge while still not having all of his records so the lawyer pushed the date back until everyone is on the same page. We're fine with some money going to a lawyer cause honestly we're tired of Social Security's bullshit. It's far too mentally draining.


----------



## cmack

Jennifer,

That really sounds like a bugger of a situation for your family. I too agree that that bag of B.S. is ten pounds in a five pound sack. 

"First they ignore you, then they laugh at you, then they fight you, then you win". Mahatma Gandhi

I wish you all well and the best of luck,

cmack


----------



## Wildmtnhoney

So, I have a strange update.  I recieved a letter from SS with a packet from a doctor (that I've never met) who went over my history then basically said I have no physical limitations to working most jobs.  They did ignore all my comorbid psych conditions.  I could have sent in more information rebutting that, but frankly I'm worn out, and they already have everything anyway.  Well, I thought that meant it was "over" and I'd be denied any day now.  

However, today being the 31st, I just went to the SSA.gov site, and it says I have a *new* hearing scheduled for July!  Why would that be?  Just so they can turn me down then?  I am so confused!  I guess I have to wait for the new packet to arrive in the mail, to see if there is anything else new in it, but does this sound like I still have a chance?


----------



## peluchde

I was turned down the first time and I think most people are.  I appealed and got my benefits the next time.  Hang in there!


----------



## MizzSarah

I was turned down the first time because my diagnosis was not 'suffient enough. Their was no way to say yes my condition will continue to last more then 12 months etc. Finally got it with the same diagnosis but I had to go see an advocacy group who helped me reapply with more documents to support how debilitating it is. I used a checklist that included the points I had to prove in order to get it and I believe that's what sealed the deal. 



Wildmtnhoney said:


> So, I have a strange update.  I recieved a letter from SS with a packet from a doctor (that I've never met) who went over my history then basically said I have no physical limitations to working most jobs.  They did ignore all my comorbid psych conditions.  I could have sent in more information rebutting that, but frankly I'm worn out, and they already have everything anyway.  Well, I thought that meant it was "over" and I'd be denied any day now.
> 
> However, today being the 31st, I just went to the SSA.gov site, and it says I have a *new* hearing scheduled for July!  Why would that be?  Just so they can turn me down then?  I am so confused!  I guess I have to wait for the new packet to arrive in the mail, to see if there is anything else new in it, but does this sound like I still have a chance?


----------



## emilyt804

nogutsnoglory said:


> I can apply but I'm not healthy so part of me hopes I don't get called for interviews till I'm fully ready.


If you want to game the system, this isn't really ethical I guess, but you can do it: 

Apply for jobs you're totally not qualified for.

Any job counts.  That's the rule.

So, apply to be president of a university.  Apply to be the Librarian of Congress.  Apply to be a hospital administrator.

Chances are, you're not qualified, but all you have to do is apply to three jobs a week.  As long as you follow the rule, they won't deny you unemployment.

You're right; it's totally pointless to apply for work when you're flat on your back; how would you even work the job if they flat-out gave it to you?


----------



## itsmebabs

Besides being really sick from Crohn's and all its complications I have been denied SSI. Never received the denial letter in the mail and when I called my case manager to send her my latest bloodworm,,,anemia etc.she never said anything to me and I was already denied and she never told me!!! So now I missed the 60 day time to appeal and the SS office said they will write a letter explaining that and I have to wait 21/2 years to go before a judge to see if he'll allow me to appeal!! Yikes! I think the whole system stinks and so unfair.


----------



## ronroush7

I am so sorry.


----------



## itsmebabs

I am so sorry this disease has brought on other issues nonroush for you as with me. Sending you healing energy.


----------



## ronroush7

itsmebabs said:


> I am so sorry this disease has brought on other issues nonroush for you as with me. Sending you healing energy.


Thanks.


----------



## Kit

@itsmebabs  So sorry.


----------



## Wildmtnhoney

Thank you all for all the kind words throughout this difficult journey -- my final verdict: denied.  Mostly because we had to go back SO far (2008) to find me enough credits, because I haven't been working in so long, and didn't apply in all that time because I didn't think I was "sick enough" -- blah!  

Anyway, I have thoughts on what I *can* do -- I can try to work, even if I can only stay employed for just a teeny tiny bit, I just need to earn the required 4 credits each year, for the next 3 years (I am pretty sure that will catch me up, I need to check once again, because I did do work the past few years, too) then, if needed, and qualified, apply again.  

I am super lucky in that my husband can (mostly) support us while I go through this.  It's just hard (I know you all know that!).


----------



## MarexoBear

Hello all,

Has anyone had an issue with their GI not signing off on the medical statement requirement for California SDI? My GI told me flat out I am too sick to work and have no other options for treatment but he refuses to sign off on my claim because, "I am not truly disabled".

- Mare oo:

Diagnosed: 2012 CD *|* Surgeries: laparoscopic cholecystectomy 2016 & resection of small intestine and colon 2017 *|* Medication(s): None – ran out of options


----------



## Kit

@MarexoBear  I am so sorry you having to go through this!  How frustrating!  Maybe it is time for a new GI with an IBD specialty.


----------



## curlywurly

Hi All
    I thought I would give you an up date on my financial situation.
    I was turned down  by the ESA after my recent medical, so now I am on JSA
    I went on extended sick for the first three months which is allowed but now that has run out I am back to having to look for work.
    I cant tell them I am not fit they will stop my money and my husband has only recently found work himself after illness, he works 21hrs a week so his money pays the bills and no more.
  I have applied to release my work pension early on ill health grounds I have been for a medical with them and now I am waiting for the reports from the GI and my GP.
  I get so fed up with having to fight for everything I have worked all my life & this disease has left me unreliable as an employee.
Sorry it is so long winded but I have to vent now & again.


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## tots

Jennifer-

I applied at the end of Sept for SSDI-  I was sent to a Dr in Dec for SSDI I asked her what she thought- she said she felt I was disabled from both the CD and arthritis. Also autoimmune. Waiting for a response. How much does their Drs opinion matter do you suppose? How long does it usually take do you think after the appt?


Lauren


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## thike1966

I'm nervous as Hell. I want to work again but can't. So I surrendered to apply for disability after 9 monh. I hired a lawyer who will charge 25% of my initial payment and work through any appeals. It's been three months since I applied. The lawyer now handles the paperwork. I am waiting to be scheduled with a consel doctor. I'm currently flaring due to food poisoning and stress of my knee dislocating and waiting on results from an MRI. My orthopedic doctor is pretty sure I'll need surgery. Scared to death about general anaesthesia and being in a flare.

I've always had misaligned knees called dysplasia. It was no problem when me legs were strong from 50 to 100 miles a week bicycling and playing competitive park volleyball in the summer. But with 10 months of inactivity, everything is galling apart. My muscular legs are as thin as they were when I was 8 years old 

I've got an expensive Donjoy brace that keeps my leg together., So I'm surviving when I crave so deeply to be thriving.


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## rrhood1

Thike1966 - so sorry for all you’re going through. I hope it works out for you. Canadian Disability has been easier to get although they don’t give you enough to live on. We’re here for you if you need to vent.


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## thike1966

Thank you. Stupid idiots in America so scared of socialized medicine and sold out by greedy money mongers that the great start of Obamacare is stalled like a scooter going over a mountain pass in winter. As Winston Churchill said, “America always does the right thing after trying. everything else.”


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## curlywurly

Hi thike 1966

I am so sorry to hear the many things you are going through at this time.
The benefit system has changed in England we now have Universal Credit.
I recently went for an assessment and would you believe it I got it.

I don't understand the system you have but why would you have to pay to get
 a reconsideration to your claim.
I think the whole benefit system where ever you live is designed to keep people
like us who want to work but can't in poverty.
I am lucky in the fact I have an husband who is understanding of my condition and able to work to help keep our heads above water (just)
I feel for people on their own having to deal with their condition and fighting for
 money to help you live.
Sending you lots of love.


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## thike1966

Update:
The doctor I was sent to by Social Security I saw today and he is actually a psychiatrist.  I had no idea what I was getting into. I thought it was a medical review. When I applied the guy who took my application at the Social Security office has Crohn's and because of the anger issues Prednisone causes and my script for Welbutrin, he said putting mental issues on the application would enhance my chances. My lawyer agrees.

It was a 18 page report he filled out on a computer. I was In pretty bad shape, the stress causing a flare, 8 times a night bathroom visits, before Imodium AD starts to solidify and slow down. The appointment went well, a compassionate man suggested I get on anti-anxiety meds and confirmed my mental state is exacerbating my dissability. I may go back to see him for therapy, his office takes Medicaid.

I was not able to solve all the cognitive function questions. I could not connect egg and seed. My IQ and Elvis have left the building. I usually love analogies and get them all correct. When I was a computer support engineer, we used to play games repeating strings of digits. One time I repeated 32 double digits. Today I got lost three times on 4 double digit strings. Of course eventually on the way home I connected egg and seed as reproductive. 

I got four hours of sleep afterwords, still nervous but somewhat relieved. I guess it's a good sign that they question mental issues not only physical. I know they are actually extremely connected.

I will call my lawyer tomorrow to update her. 

I saw my GI yesterday, he believes I might be rejecting Humira, as happened with Remicade. My GI wants me on Stellara, but until I fail one more drug, Entivio, I won't get the $17,000 to $30,000 a year Stellara.  So four blood test yesterday and today. I took my Humira shot after the blood test as my GI instructed. Stay the course until blood test come through. So continue Prednisone, blurry vision and vitamin supplements and Metformin to counter the insulin steeling, calcium robber and shaking hands with the devil that keeps me out of the hospital. 

We all have to keep on fighting until we get what we need, we are too important to do otherwise.


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## thike1966

Update:
The doctor I was sent to by Social Security I saw today and he is actually a psychiatrist.  I had no idea what I was getting into. I thought it was a medical review. When I applied the guy who took my application at the Social Security office has Crohn's and because of the anger issues Prednisone causes and my script for Welbutrin, he said putting mental issues on the application would enhance my chances. My lawyer agrees.

It was a 18 page report he filled out on a computer. I was In pretty bad shape, the stress causing a flare, 8 times a night bathroom visits, before Imodium AD starts to solidify and slow down. The appointment went well, a compassionate man suggested I get on anti-anxiety meds and confirmed my mental state is exacerbating my dissability. I may go back to see him for therapy, his office takes Medicaid.

I was not able to solve all the cognitive function questions. I could not connect egg and seed. My IQ and Elvis have left the building. I usually love analogies and get them all correct. When I was a computer support engineer, we used to play games repeating strings of digits. One time I repeated 32 double digits. Today I got lost three times on 4 double digit strings. Of course eventually on the way home I connected egg and seed as reproductive. 

I got four hours of sleep afterwords, still nervous but somewhat relieved. I guess it's a good sign that they question mental issues not only physical. I know they are actually extremely connected.

I will call my lawyer tomorrow to update her. 

I saw my GI yesterday, he believes I might be rejecting Humira, as happened with Remicade. My GI wants me on Stellara, but until I fail one more drug, Entivio, I won't get the $17,000 to $30,000 a year Stellara.  So four blood test yesterday and today. I took my Humira shot after the blood test as my GI instructed. Stay the course until blood test come through. So continue Prednisone, blurry vision and vitamin supplements and Metformin to counter the insulin steeling, calcium robber and shaking hands with the devil that keeps me out of the hospital. 

We all have to keep on fighting until we get what we need, we are too important to do otherwise.


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## rrhood1

I’m glad there is some good news for you. The psychiatrist sounds like a decent guy - it’s  hard to find a good counsellor. The hoops the government makes us jump through are amazing.


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## Jennifer

I wanted to let everyone know that I went up for review for my SSI again (they review you every two years now, not sure if that varies from state to state) and lost my disability status but I got it back without a lawyer and here's how.

I got a lawyer who at the time said he would take my case and after finally getting all of my records he decided he didn't have the time to take my case just weeks before it was due. He suggested some other people and I contacted them but they were the wrong kind of lawyers and I didn't feel like attempting to contact the long list of lawyers that Social Security attempts to supply which I imagine wouldn't even be up to date knowing them. He also suggested that I go to the SS office and request my records (*this is the most important thing that helped my case, you need to do this*).

I went in personally to request my records and I was told that they don't give those out. I said there must be something they can give me in order to appeal the decision. So the gentleman working there said that he could give me the *notes of the person who decided my case*. I didn't know that was a thing I could do and I was shocked when I read what they had to say. I'll share it all at some point. The main thing is that I could now refute every single garbage point they attempted to make about me as a person and about how disabled I really am. They also admitted that some of my records were lost so what were they even basing this decision on?

I wrote my own appeal and requested a hearing with a judge (*see a judge, no one else*). I also provided reports from a test they claimed was false. I wrote the thing to make that person who decided my case feel like an idiot in case they ever read it. I won my appeal without a lawyer and I don't think that's common. I think the only thing that helped me was getting the notes the person made who decided my case. I received a letter saying that I didn't need a hearing because they decided that I was still disabled. *This decision took 8 months.*

They clearly can't read, they don't look at your records and only rely on a "doctor" who also clearly can't read, they're extremely rude and they assume everyone is lying. Don't give up. They aren't trying to help you. They aren't following some guidelines that I'm sure all of us assumed they did. I'm pretty sure everyday is Friday in their minds and they're just a bunch of assholes.


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## Irishkelly

Jennifer,    Great news!  I appreciate sharing all that you went through to win your appeal and continue your SSI. My son applied in 1995 and was denied. We appealed because he was a minor. Hired a SS lawyer and the hearing was set for 1998. Meanwhile we had moved from Georgia to the Midwest.  He won the appeal and he did not have to appear at the hearing.  That got me curious because that meant they were relying solely on paperwork. Since that was the case, they had the same paperwork they used to DENY.  Difficult to predict their decisions, especially when there are hidden handicaps to be considered. In 1995 we reached out to the CCFA but there were few incidents where CD was allowed SSI.  Obviously that is no longer the case.  But it took 3 years for that reversal.  Since that time he has been reviewed every 3 years, and was also examined by a doctor SS selected. He continues to receive SSI. Even though this is an incurable disease, a CD patient has to present each and every symptom he or she suffers from in order to continue. I get why some patients never apply in the first place. Thanks to this forum and to the patients willing to share their journey!


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## Jennifer

Irishkelly said:


> Even though this is an incurable disease, a CD patient has to present each and every symptom he or she suffers from in order to continue.


That's not true Irishkelly. Since Crohn's is unpredictable and can cause extraintestinal manifestations that alone can continue your claim for disability even if you're in remission. The hard part is arguing that with someone who doesn't understand and that's how lawyers can help but it is possible to do on your own as well.


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## Tubes

Jennifer said:


> That's not true Irishkelly. Since Crohn's is unpredictable and can cause extraintestinal manifestations that alone can continue your claim for disability even if you're in remission. The hard part is arguing that with someone who doesn't understand and that's how lawyers can help but it is possible to do on your own as well.


I apologize if this is rambling as its been a few days since I’ve slept due to insomnia and this is a topic I’ve had 1st hand frustrations with the past few years...

Arguing with people that don’t understand is the worst.It took me forever to get SSI in 2006 after over 12 years of crohn’s flares,constantly being in the hospital for more than a month each time and a bunch of surgery.I didn’t have the energy or the money to take them to court but after one of my doctors wrote them a letter detailing what was going on with me I finally got SSI.

Once I had SSI things ran pretty smooth they gave me a specific person in charge of my case she was on the ball and really seemed to genuinely care.she’d call me a few times a year to see how things were and it got to the point I would get automatically renewed not having to do a thing.She left SSI in 2013 and things started to go to hell because then you got whoever you got each time you called and 9 times out of ten they didn’t want to help and they’d pass you off to someone else leaving you waiting on hold to forever and leaving you to have to re-explain everything to a new person.

For the last 2 years they’ve screwed with me a bunch of times first when my mom died I had to close out all her accounts and while talking to the SSI people for my mom they told me I should be getting more money in my check from them so I did everything they asked of me and I got approved a week later for pretty sizable increase in my monthly SSI check only problem it took them 9 months to actually give me my money.About a month later I received a letter from them detailing my new monthly amount and a considerable amount of that they claimed them owed me for about 12 or 14 months before that to be rationed out over 3 payments over the course of 6 to 9 months.

I got my 1st back payment and it was considerably less then the letter told me it would be and about 4 months later I got my second and it was less than the 1st and then the 3rd one never came.For months I called the new guy in charge of my account he never answered his phone or returned my messages so I just called the main line but they told me they couldn’t help me.While all this is happening about a year in I received to renewal application and requests for other info from me so I faxed it all over the next day got conformation they received it then about 3 months later I got a letter saying my SSI was renewed but the next day I got a letter saying my SSI was declined so I called them and I was told to disregard to one that says I was declined and only only pay attention to the one that says I’m renewed.

3 months later I received a letter on my birthday informing my SSI had been canceled due to them never receiving my application & requested documents only was I sent them everything they requested 6 months prior and I had received conformation they received but now they can’t find it.For like 6 or 7 months I got the run around on the phone nobody seemed like they wanted to help me.Then I finally got someone that wanted to help on the phone I arranged for me to have a bunch of tests and then I had to see a doctor who i’d never met before that was 2 hours away from me and he would decide it I was permanently disabled and he said I was so My coverage was back and due to me keeping the forms they originally sent me I was able to be paid the total backpay they owed but never gave me 2 years prior.

It shouldn’t be that hard to get and retain coverage when your ill especially when your permanently disabled.I’ve had over 20 surgeries and I’m only in my mid 30’s I’m running out of things for them to remove and the hassle of dealing with the SSI people was aggravation I did not need.


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## Jennifer

Definitely Tubes. Dealing with anyone from SS these days is a nightmare. They don't have one person who handles your case anymore (which was awesome back in the day) and it appears that none of the current workers even understands basic math. I haven't received any letters regarding my back pay, just a random amount I noticed in my bank account one day (less than half the amount I should be owed) and I started receiving my normal monthly amount again. The only way for me to find out exactly what's going on is to go into my local office, take a number and ask a random worker there after waiting for hours. They don't have a direct line you can call anymore at my local office and even said that you're not allowed to make an appointment to "ask questions" which I did before to get information about my case but they had me take a number instead and I got to wait for hours even after making an appointment. Calling the 800 number is completely pointless because only the local office can provide more detailed info about your case and it doesn't even give you the call back option anymore so be sure to have your charger handy and a few hours to spare.


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## curlywurly

Hi Jennifer
I have been looking at the problems you all are having with your benefit system it is as bad as here in Britain with our new system
We have to apply on line now it is called Universal Credit and if you are ill you have to be assessed like you to qualify for Employment support allowance if you qualify you don't have to look for work. Then after two years you are re assessed again depends on who you see and what questions they ask sometimes they ask stupid questions as they don't understand what  Crohns is.
I start to dread the time when they send out the new medical form you have to fill in.
I recently applied for my pension from my old employer which was local government I had to go to a private assessment they passed me unfit to work
& I am now getting a works pension.


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## Tubes

Jennifer said:


> Definitely Tubes. Dealing with anyone from SS these days is a nightmare. They don't have one person who handles your case anymore (which was awesome back in the day) and it appears that none of the current workers even understands basic math. I haven't received any letters regarding my back pay, just a random amount I noticed in my bank account one day (less than half the amount I should be owed) and I started receiving my normal monthly amount again. The only way for me to find out exactly what's going on is to go into my local office, take a number and ask a random worker there after waiting for hours. They don't have a direct line you can call anymore at my local office and even said that you're not allowed to make an appointment to "ask questions" which I did before to get information about my case but they had me take a number instead and I got to wait for hours even after making an appointment. Calling the 800 number is completely pointless because only the local office can provide more detailed info about your case and it doesn't even give you the call back option anymore so be sure to have your charger handy and a few hours to spare.


I’m glad your getting your money.About 5 months ago after getting nowhere by phone I went to my local office after being told by someone on the 1800 number I waited 5 hours to see someone and then they told me they had no power to help me and couldn’t tell me who could it was infuriating.

On the back pay front when I first got approved for SSI in 2006 I wasn’t notified ahead of time I just went to the ATM when I had like $40 to my name and checked my balance to make sure I didn’t overdraw and to my surprise I had like $10,000 dollars in my account and I then received a few letters a week or 2 later detailing what I was getting and that I was in fact approved.What was sad was once I figured out what was going on I sat down to pay some of my hospital bills and the money was gone in about an hour and I had barely made a dent in my debts.This was during a period where I had 7 surgeries in less than a year and half and my 2 most recent surgeries where about 4 weeks prior the 1st being my J-Pouch burst so I had emergency surgery then 24hrs later I needed a second surgery due to a really bad infection then post surgeries they kept me in ICU for a month and I got pneumonia while in ICU.When I finally got home I had a $3,500 ambulance bill and that hospital stay and surgeries was more than triple what I received in SSI back pay.


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