Disability/Unemployment/Financial Difficulties Support Group

Crohn's Disease Forum

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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.
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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 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!
 
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???"
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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. :)
 
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.
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Call Berger and Green..be prepared to wait 14 to 18months
 
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.
 
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.
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Thank you so much for sharing! :hug:
 
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???"
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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!!
 
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.
 
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.
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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.
 
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.
 
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.
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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.
 
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.
 
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.
 
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.
 
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!
 
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!
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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.
 
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!
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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.
 
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.
 
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.
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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. :)
 
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!
 
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.
 
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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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
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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. :(
 
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
 
@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!
 
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
 
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
 
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
 
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
 
Sfrank check with your agencies. There may be welfare programs that can help
 
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
 
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
 
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!!
 
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.
 
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.
 
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
 
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:
 
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).....
 
Great news Lisa! Very happy for him. :D

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.
 
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
 
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?
 
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!:)
 
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?
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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.
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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?
 
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.
 
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!).
 
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 :poo:

Diagnosed: 2012 CD | Surgeries: laparoscopic cholecystectomy 2016 & resection of small intestine and colon 2017 | Medication(s): None – ran out of options
 
@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.
 
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.
 
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
 
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.
 
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.
 
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.”
 
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.
 
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.
 
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.
 
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.
 
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.
 
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!
 
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.
Click to expand...

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.
 
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.
Click to expand...
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.
 
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.
 
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.
 
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.
Click to expand...
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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