Torn.. Please Help – Should I Go On Disability

Introduction:

Hi. I’m a single mom in mid 30’s diagnosed with UC in 2010. I’ve had one hospitalization for almost a month this past year and needed almost 6 months to recover.

My Symptoms:

Just recovering from an almost month long hospitalization last winter. I’m almost out of the woods with occasional pain and side effects from medications.

My Story:

This is a great website and not only have I learned a lot, but i don’t feel as alone with this disease. Besides my failing health, I’m most concerned about money. I know Ulcerative Colitis and Chrohn’s is on the ssi disability list and was wondering if anybody has applied or currently is on disability for it?  I have a very physically demanding job that has crazy hours during the night and am worried about future flares as well as dealing with side effects from all my meds, almost 20/day, and remacaide every 8 weeks. I barely work now as sometimes I need a full week to recover from other illness whereas before I could just work with a cold, sinus infection, bronchitis, etc. So I’m considering applying but am torn being a single mom and i can never get my job back… One of those rare jobs that once you are out that’s it. Plus this economy sucks and no one is hiring for anything anymore much less a job with good pay and benefits like I receive now.

I also am concerned about health care and if I would qualify for free health care. I would like to go back to school to work in another field that is less demanding too. Not sure what to do and if anyone has an insight or experience with this I would sure love to hear it! Also i own a home and not sure if that would affect any kind of benefits. Also what if god forbid they remove my colon and I’m ‘cured’ would i get kicked off disability? Is disability for life or can they kick you off? Ive never received a dime in any kind of aid.. Even college i paid outright! So I don’t know much about this whole process. Thanks! :)

Where I’d like to be in 1 year:

I’d like to be happy and healthy in one year! :)

Colitis Medications:

Imuran 150 mg/day (3 pills)
Balsalazide 6,750 mg/day (9 pills)
Prednisone 40 mg/day (4 pills) just finished a long/weighty :( run of that
Remacaide every 8 weeks

written by Betsy




disability

5 Responses to Torn.. Please Help – Should I Go On Disability

  1. Allison-3
    Allison September 30, 2012 at 5:20 am #

    Hi betsey-
    I am also a single Mom and I was in a very similar situation when I was diagnosed in Feb 2010. I owned my own green cleaning business and waitressed on saturday nights. When I got sick I was bed-ridden for 3 months and I had to slowly let go of my business and sell to my partner. I qualified for 6 months of state disability benefits (no extensions exist). I have always been EXTREMELY independent, so it was challenging (and humbling) to realize I needed to ask for a lot of HELP!!! I went through my savings in about a year, sold off everything I owned and eventually my boys and I had to move in with my Mom (YIKES!!!).
    I looked into federal disability and even though ulcerative colitis is listed- it is made nearly impossible… the parameters are crazy and seem pretty unfair. It’s crazy that this disease is not recognized for how truly limiting and financially devastating it truly can be. I am sure many others have had experience with trying to go for SSI and can fill you in more on the process.
    The good news is that I do receive Food Stamps and FamilyCare for myself and kids in my state. I took advantage of the time at my Moms to finish my BS in Biology (got my degree May 2012). It has not been easy to live at home but it has also been a relief to not have financial stress. Currently, I am getting over a small flare-up so I figure I’ll be starting a new career in the beginning of 2013. I have learned to be PATIENT from ulcerative colitis!!!
    Best wishes, I hope you have a good support system and you see a big improvement in your health and financial situation soon.
    Allison

  2. Adam
    Adam September 30, 2012 at 8:57 am #

    Hey Betsy,

    When back in 2008 just under 4 years ago, when i was super sick with severe UC, I had to stop working, work just wasn’t possible anymore right, and I easily qualified for 2 months disability with the state. All it took was a form signed by my previous GI doc, and I believe the company I worked for had to file some form as well. Two months later I was off disability, and working again(although not very well at that point), but for me, the disability process was very simple with the state. I don’t know if you have any type of human resoures department at your work or not, but that maybe a valuable resource to tap into to see what your benefits are/would be from that side. You may have some long-term disability insurance that might help you out which your company has already paid for (again, that all depends on your deal where you’re at).
    Another idea is, maybe you could contact a local insurance broker to find out what types of options he/she might have for you.

    Also, Allison above has got some pretty good ideas too:)

    NO matter what you do, I wish you the very best,

    -Adam

  3. alex September 30, 2012 at 5:03 pm #

    Hey betsy,
    I am on disability now. It took a year, a lawyer,an apeal, and a lot of blood. My advise is contact a disability lawyer (who doesn’t get paid unless you win) as soon as possible because its a slow process. Fact is there is no way to tell if you will need it by the time you get it, but its good to go for just incase you do. The hard parts for the courts to accept is being young (I’m 32) but keep a good copy of all your doctor visits, and keep going to doc and let them know you are not well.
    Lastly, the money is not a lot, but every bit helps when you can’t work.
    And I understand about moving back in with mom (or dad in my case), but I’m trying to look at it as an opportunity rather than a setback.
    Warm wishes to all
    Alex

  4. k.colney September 30, 2012 at 7:37 pm #

    hi betsy,i m from india,n due to ds ibd ihv to live in mumbai coz m fr a small town whr thr r no gud treatment,or thgs to buy in abundant. here im in a city single though most of d time m dad support me for m ramicad,pred..blah..im 33 whn m remission wtout any problem why should i depend on m dad,so i gt bk to work gt stress n m problem cums bk to me evry three years wt a month in the hospital.so now i decided to change m career into yoga n fitness,u cn do ds course evn in US d best part is u do wt an mlm bznz which im doing n eating thr supplement as well:-)for this u mailme :-)for yoga u cn train pple at ur plc n also adjust ur own timing according to ur convinient.i hvnt finish mine but now m doc toldme m fine i cn b release fr d hospital soon but ijus need albumin so once i tk ds drip il b bk in m new flat irent wt m sis who has cm to takecare of me :-)thn il put ad n teach at m flat for mkn it attractive il do wt a complimentary facial n skincare:-)n now in US its a hub thg anyone vl b interested so i advise dat u go for it evn bikram yoga,m doing more of hathe n pranayam yoga…plz mailme n il share u evrythg or findme on fb kawlnithangi colney

  5. Mrs Huds October 2, 2012 at 1:00 am #

    Betsy,

    I understand your trepidation. My hubby had to wrestle with the same decision, but before he could make it, one was made for him. He was let go from his job and has filed for disability and unemployment. We heard from unemployment, that was pretty quick, but it’s been months and we are STILL waiting to hear from disability. When he went into the hospital for surgery, unemployment wouldn’t pay, because he’s physically unable to go to work.
    We don’t qualify for food stamps, because I make too much. I don’t understand why the disability process takes so long and the unemployment does not have a contingency to pay for being in the hospital.

    I love that you have the presence of mind to ask all of these questions your answers are given to you. I wish you best of luck and keep us posted.

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