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
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Pam Hop, Margaret Roof, Winifred Schillberg, Arnold Slotkin, and Juliet Youkhana. Plus donations in honor of Kim Thwaits, and in loving memory of Marta Marx, Jim Miller, and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: