Seronegative Polyinflammatory Arthritis

Hello, I am new to this site, so I apologize for the long comment. I’m a 57 y.o. female web designer at a major medical center in Chicago. I became ill 12 years ago when I was 45 y. o. with what I thought was the flu. Total body aches. This morphed into cervical and lumbar spine pain, bilateral joint pain in hands, wrists, elbows etc.

My current diagnoses are: I am seronegative so my RA diagnosis turned into by Psoriatic Arthritis default, Bilateral carpal and cubital tunnel (told that it is caused by my immune system, so no surgery) Fibromyalgia, Hashimoto’s Thyroid disease (my thyroid is mostly scar tissue) Eosinophilic Esophagitis ( I have had 4 esophageal dilations due to strictures) Raynaud’s disease (hard to control) DD cervical and DD lumbar spine disease and Osteopenia.

I have tried an exhausting list of alternative and conventional medications and types of physical therapy over the last 12 years. I was on Enbrel for 6 weeks, and had to stop due to the horrible neurological side effects and a severe upper respitory infection. I will start Humira next week.

My job requires long hours of keyboarding and mousing, which aggravates the inflammation in my hands, wrists and elbows and spine. I am in constant pain.

I am to the point of applying for disability. My job provides me with health insurance (husband is on my policy as he is self employed), short term disability, and long term disability.

I am terrified of this process and want to go about this with armed with as much knowledge as possible. Since a few of you seem to have experience with this I was hoping to get some input. Any advice is appreciated. Thanks for reading this.

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Comments

View Comments (5)
  • sc author
    4 years ago

    Thank you all for your replies and the suggestions. I truly appreciate your support.

    Sofia, HR suggested that I register as a disabled employee. I have not done so because I am afraid of being labeled and, for some reason, I really don’t think of myself as having a disability. I am also, in all honesty, still in denial about my illness(es) and continue to think that one morning I will wake up and feel like my old self– the avid runner, exercise enthusiast…

    I have decided to hold off on starting Humira, and will go back to trying alternative therapies and reduce my work hours. I already telecommute, but have found that the only thing that helps with my symptoms is staying off the computer. I will check out the eeoc gov site. Thank you all for your suggestions and support.

  • SofiaRA
    4 years ago

    SC have you thought about asking for a reasonable accommodation due to your RA at work to see if you could maybe work a reduced or part-time schedule to see if that would help reduce your symptoms. If you get really fatigued maybe you could also ask to telework from home, as part of the reasonable accommodation. RA/Psoriasis arthritis are considered disabilities under the ADA as they affect the major bodily function of your immune system. If you could possibly work a reduced schedule and improve your symptoms, hopefully the employer could still provide your health insurance at what you pay now. The Job Accommodation Network through the Department of Labor’s website may offer you ideas you have not thought of so that you could continue to work with your disability. Also the website http://www.eeoc.gov give more details on requesting reasonable accommodations from your employer if you have a disabilitythat that is covered under the ADA.

  • Carla Kienast
    4 years ago

    I’m with Jenn in thanking you for sharing your story. Yes, I can understand what a scary time it is for you. The link to Mariah’s Social Security benefits information should be helpful. One thing that she does not mention is that if you are not old enough for Medicare (65 years old), then you have to be on disability for two years before you qualify. This means you have to provide your own health coverage during this time. As your husband is also on your policy (instead of vice-versa), this is an immediate concern. You very probably are eligible for COBRA benefits with your employer (where you can stay on their health insurance by paying the premiums directly). That generally is available for 18 months after you terminate your employment. You can then find health insurance either directly or via the healthcare marketplace. Unfortunately, both COBRA and direct health insurance is pretty expensive. I know you have some serious decisions in front of you. Know that you’re not alone and that, per Jenn’s post, you’re always welcome here for advice or just to share. Thanks again and good luck.

  • Jenn Lebowitz
    4 years ago

    Hi sc-

    Thanks so much for sharing your story, and sorry to hear you’ve had to deal with so much pain. Our thoughts are with you!

    While you may get more feedback from the community here, I wanted to share a few things with you. First, this article might help with applying for disability: http://rheumatoidarthritis.net/living/rheumatoid-arthritis-social-security-disability-benefits/.

    Secondly, I thought you might like knowing that you are welcome to post in our forums, where you may get more potential community feedback. If you’d like to do so, the forums can be accessed here: http://rheumatoidarthritis.net/forums/.

    I truly hope this helps!

    Best,

    Jenn (Community Manager, RheumatoidArthritis.net)

  • sc author
    4 years ago

    Hi Jenn,

    I appreciate the information and links. I will check out the link and post in the forum.

    Thanks,
    Susan

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