Employment with this Illness?

[dino]

What do people with severe UC/Crohn's do for employment? Please don't tell me just use ADA, state, or medical leave options- I've exhausted all those options.

I worked so hard, got my masters, and now I can no longer do my career anymore. I was in the health field, but working for a school district with special needs kids. I tried staying in it as long as I could but my symptoms were too severe. I do not have UC/Crohn's, but I have the symptoms of it, and no doctor (I've traveled all over the US to various hospitals) can figure it out.No medication or diet has helped. Daily symptoms with severe flares every 5-9 months.

My funds are now depleted. What do people seriously do for work with this illness? I tried going back to school to get a computer degree/ graphic design but I'm so bad at it, it's torture. I do not want to do some virtual minimum wage data entry job. Help! What to do!

 

[ronroush7]

I don't have an answer for you but I am sure there are people on here who probably will.

 

[cmack]

Can you apply for social assistance? Maybe it would help allow you to see a specialist and get treatment and diagnosis. There is no shame in asking for help, you have my support.

 

[dino]

Hi Cmack- I have tried that. Because my last job was a government job they said I am not eligible. I was shocked- I had no idea that could be possible. I tried fighting it, but they said I already used the programs funds with my last job when I kept going on leave.

For anyone else out there that does not yet have a diagnosis but knows something is going to hit soon, go get Disability Insurance. I wish I knew about it earlier in life. It's like liability insurance. You put in money each month, and if you get sick/diagnosis they can pay you even 6-10,000 a month, non-taxed.

It's too late for me now because my medical records show too much and I am not working full time. But man is this my biggest regret. If I got this when I was younger it would've been a safe back up plan for me now.

 

[cmack]

I would still keep trying to apply anywhere you can for financial assistance. I'm sorry to hear this is happening to you. Sometimes it takes a while, but you should qualify under some program. I hope this is the case anyways.

 

[ronroush7]

I would still keep trying to apply anywhere you can for financial assistance. I'm sorry to hear this is happening to you. Sometimes it takes a while, but you should qualify under some program. I hope this is the case anyways.

I agree. Keep trying

 

[Lisa]

I have had Crohn's/colitis since I Was a child, and have had some type of job or another since I was probably 12 years old....even when in flares, I have managed to keep myself afloat thankfully, although it wasn't always the best for my health.

Jobs I've worked at over the years -

Shelf stocker (pack-out person) for large wholesale company - didn't pay a lot, but I got to make my own hours and schedule...which was great.
House/pet sitter
Groom/farm hand on horse farms
auto parts delivery person (I knew where every clean bathroom was on my routes!!!)
911 dispatcher
Fire department dispatcher
EMT
State Fire Marshal (my current job since 2002)

I would keep trying to get a diagnosis, have you kept food and/or symptom diaries to see if there is anything that makes things worse or better? What kinds of medications HAVE you been on so far? Maybe someone here has some additional input for you....

 

[cmack]

That's an impressive resume!

 

[Dyana]

I believe you need a job with flexibility- that works best. Sit when you need to and move when you need to. I have had very physical jobs for many years- I couldn't do them anymore. With Crohn's for 30 years now I work a desk job and go to court only 4-6 times a month for the last 10 years. Look for something in state or town government and let them know you have issues when you are hired.
I have a large caseload and only 1 person qualified for SSA benefits for Crohns- with an attorney helping him. I have 2 others who have been denied repeatedly. I have never attempted assistance but if you do you really need medical documentation to support your claim and you will usually be denied at least once. Good Luck and I hope you get what you need.
-Dyana

 

[Anna's Bandit]

Lisa: you are a strong and brave person. Your story is amazing and I am glad you shared it.

 

[Anna's Bandit]

Dino, don't give up. I started receiving SSD benefits in January of 2013. I hired an attorney. my SSD case focused on mental health issues and my ulcerative colitis issues. sometimes I feel guilty for collecting the SSD benefits because many people are worse off than me with their health. suffering from major depressive disorder anxiety and ulcerative colitis is a vicious circle as one thing can cause the other to worsen as far as my health is concerned. I worked extremely hard during my 30-year career and I am now 57 years old and I consider myself retired because saying handicapped or disabled carries such a Negative tone to it. there is hope for everyone out there who suffer and don't stop trying to get help because you deserve the help.

 

[cmack]

I agree, if you are truly deserving of help take it if you can. These programs are designed to get you working again, so you can look at it as a temporary means to improves things in the long term. You sure don't sound like you want to receive a handout just to be lazy. I also agree with maybe looking into jobs with other government agencies as was suggested. JMHO

 

[Lisa]

Lisa: you are a strong and brave person. Your story is amazing and I am glad you shared it.

Thank you.....I've had my ups and downs in life, but I guess I'm just stubborn! lol.....

I totally agree with trying to find a government job, I started with a County government job in 1994, and eventually worked that into my current NYS government job (Fire Marshal)......if it wasn't for that, who knows where I would be with health insurance and my health overall.......

Oh...and that isn't even my 'full' resume lol...lots of other stuff I've managed to do over the years, and continue to do!

 

[Max's Mom]

My hat's off to you Lisa,you give hope to all of us( I am just a mom who worries about my son's future with this terrible disease)

 

[Kendra2276]

systemic mast cell? I know there is one for the gi tract. Have you tried to get tested for food allergies and food sensitivities? I know food sensitivities can be a controversial test however when you are desperate it can be a good starting point.

 

[dino]

Thanks Kendra- yes I have a million times. I've done the food diets I can't even count now. SCD, AIP, Paleo, GAPS, FODMAPS, diets from ALCAT and MRT leap... nothing works. At one point I even was only eating 4 foods for 4 months... it did nothing at all besides make me lose weight. Every nutritionist I have worked with gives up and says it is no way can be just your GI and every GI doc goes back to watch what you eat. Drives me crazy. I can now officially rule out food, although food can make it worse.

Mast cell I have been tested for... and I'm going in for another test in 2 weeks. It's always negative.

The work stuff isn't realistic for where I live... in a big city. I can't uproot my whole life and move to a farm just because of this illness. It's so depressing. I have worked in govt jobs... it does not matter- still the same problem. I worked so hard, got a masters, was making good money... and now I feel really stuck and lost.

 

[Anna's Bandit]

Hi Cmack- I have tried that. Because my last job was a government job they said I am not eligible. I was shocked- I had no idea that could be possible. I tried fighting it, but they said I already used the programs funds with my last job when I kept going on leave.

For anyone else out there that does not yet have a diagnosis but knows something is going to hit soon, go get Disability Insurance. I wish I knew about it earlier in life. It's like liability insurance. You put in money each month, and if you get sick/diagnosis they can pay you even 6-10,000 a month, non-taxed.

It's too late for me now because my medical records show too much and I am not working full time. But man is this my biggest regret. If I got this when I was younger it would've been a safe back up plan for me now.

I didn't know about Disability Insurance either. I worked at a bank for 24 years and it was surely something that would have been available to me while I was still working there.

 

[Anna's Bandit]

I agree, if you are truly deserving of help take it if you can. These programs are designed to get you working again, so you can look at it as a temporary means to improves things in the long term. You sure don't sound like you want to receive a handout just to be lazy. I also agree with maybe looking into jobs with other government agencies as was suggested. JMHO

I collect SSD benefits and I do not consider it a "hand-out." I had a desk job, but I don't think my company was too keen about me being in the bathroom all day long while I was supposed to be doing my job (and I have other physical health issues as well.) Oh, yeah, having my mental breakdown didn't help either because I lost almost all of my memory, focus and concentration abilities. Add panic attacks and here I am today. This is my short story. Don't look down at folks who collect disability benefits or unemployment benefits or food assitance. 15 years ago I never imagined I would need help, but this help is sure better than being homeless.

 

[cmack]

I'm really sorry to hear you have been through so much. I would never look down on anyone for a reason like that. Sadly though, there are some who would. You have my support, Lynda. I don't judge any book by it's cover, I go by what's on the inside. You seem like a very nice person to me!

 

[Bufford]

I would keep applying for benefits if I were you. One is more likely to be successful if one can get a firm diagnosis of the illness and hire a lawyer. Depending where you live legal aid maybe available. These lawyers work for little more than a donation and are good at these kinds of cases.
Don't get discouraged when they deny benefits, they usually do this to discourage the applicant. Be persistent and you should win your case.

 

[Pixie13]

Hi Dino,

I agree with the advice contained in the other posts. Do you have a physician who might be able to help manage your symptoms until a firm diagnosis is eatablished?

With your Master's degree, might you be able to secure contract work doing research and/or writing from home? I am just finishing up post-graduate studies and do contract work that allows for flexibility. I wonder about engaging in some networking activities (even online) that might open the doors to a flexible job.

Wishing you the best.