I am thirty six years old. I was diagnosed, if you can call it that, with undifferentiated connective tissue disease (UCTD) when I was thirty.
I was ten, though, when things started happening. I was told I had juvenile rheumatoid arthritis (JRA). The doctors advised my mom to treat it with aspirin and exercise.
When I was thirty and working in an emergency room, I began to get sick often. I was hurting and aching a lot. I just wanted to lie down and sleep as soon as I got home from work, which was difficult with two very small children.
Since then, I have had to stop working. I may have a few good days where I am able to do a lot, and then I will have even more bad days making up for it. Holding down a steady job has not been possible. I am in my second year of trying to be approved for Social Security Disability. I would much rather be able to work as I miss it a lot, but I know that it will completely wear me down. On those days when I feel good, thoughts of, "I should be working like everyone else," can take over and then a few days later, I am back to, "What was I thinking?" Does this sound familiar? Wouldn't it be nice if those of us with this disease could job-share? When you are feeling good, you work, and then I will take over the next week and so on. Perhaps this is just a wish to be back in the real world.
Following my divorce, I went for over a year with no medication and no financial resources to see a rheumatologist. I had lost my health insurance with the divorce. It took me more than a year to get into an indigent-care program (what a horrible-sounding term). Now I am on several medications, which seem to be working somewhat.
The symptoms I have now are pain and stiffness in my feet, ankles, hips, hands, and wrists. My shoulders are beginning to bother me as well. I have visual disturbances where I see sparkles. I have tension headaches and a horrible rash on my arms and torso if I am exposed to the sun without sun block. I also have little red dots (petechiae) on my skin, and I get rashes and little bumps, almost like knots, under my skin. I always run a low-grade fever.For the past couple of weeks, I have been extremely tired again, wanting to sleep a lot, and I have an extremely difficult time waking up in the morning.
The rheumatologist I see now seems to think I havesystemic lupus erythematosus (SLE). I have negative rheumatoid factor with positive antinuclear antibodies (ANA), but until my symptoms better match the criteria for SLE, he cannot make a definitive diagnosis. He says treatment for undifferentiated connective tissue disease (UCTD) and SLE is the same, so it does not matter what it is called. I agree. So that is my story.
After two and a half years of Social Security Disability applications, interviews, paperwork, more paperwork, phone calls, and two denials, I was granted a hearing before a judge. I recently received a formal letter stating that I won my case and will receive Social Security Disability, as well as Supplemental Security Income. I finally feel, in a sense, that my illness has been validated. No, I am not lazy. Yes, I suffer from a chronic disease. Yes, I will continue to fight this disease. However, I have learned the hard way that part of that "fight" includes rest and it includes not only listening to my body, but doing what it tells me it needs. I still have a lot of pain in my feet.
I am now on more medications. Currently I am taking Plaquenil twice a day, Celebrex daily, Nexium daily, folic acid six days a week, and Methotrexate one day a week.
I am still seeing my rheumatologist in Galveston, Texas (under the indigent care program) and he and the P.A. are wonderful. They seem to truly care. They listen to me. I have the utmost respect for them, for they have helped me a great deal.
New email address needed 09-06-06 SLE
Old Email Prefix: Cigitex1026
Story posted 2-19-02
Story update posted 8-14-02
Story edited VH1: JTD 9-9-03
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Social Security Disability
Supplemental Security Income
Systemic Lupus Erythematosus
Undifferentiated Connective Tissue Disease
Voices of Scleroderma Volume 1
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SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.