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Gail: Undifferentiated Connective Tissue Disease (UCTD)

I always had a routine; now I have none, because from hour to hour I do not know how I will feel.

I am thirty-four-year-old female who worked as a nurse since 1987. In 1996 I worked around sick people a lot and noticed I would get sick easily. I started getting weaker physically. I had headaches, got a lot of bladder and kidney infections, and was sent to kidney and bladder specialist at a university hospital.

They did a series of tests and blood work and found I had interstitial cystitis (IC), a positive antinuclear antibody (ANA) test, and gastrointestinal dysmotility. I was referred to an arthritis doctor, who did more tests and blood work, and then told me I had undifferentiated connective tissue disease (UCTD) with scleroderma symptoms.

I thought my life was over. I missed a lot of work due to weakness and sickness. I felt lost because all I knew was nursing and what would I do now? I did not adjust well. I cried and was depressed for a year.

I was put on Social Security Disability in 1997. I have to get steroid shots in my shoulder muscles and neck for lockjaw and tightened muscles. I have a lot of bad days, which means I am very weak and it is hard just to get out of bed. I do good to do simple house work now, when before I worked eight hours a day, then came home and cooked and cared for two children, and kept up the house.

I now need help from everyone. When I do feel good, I try to do too much, and then I am flat on my back for days. I always had a routine; now I have none, because from hour to hour I do not know how I will feel.

My finger and toenail beds turn blue, and I lose nails from time to time. My hands get numb and I cannot seem to hold a glass; at times I lose my grip. My hair is falling out and breaking off. Sometimes I have problems swallowing. I do not tolerate the cold at all.

I try to do water exercise, when feel better, for my arthritis. It is miserable to have all these things going on with my body at this age. I still get down and out at times and think why me! Sometimes I feel helpless.

I see lots of doctors, including a skin doctor. I get so tired of them. I take several medications. I would like to talk to anyone who knows what I am going through.

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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.