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.
New email address needed.
Old Email Prefix: pamie1966
Story posted 2-24-01
Story edited 7-13-03 SLE
Email comment posted 7-13-03
Story Artist: Shelley Ensz
Depressed Difficulty Swallowing
Raynaud's (cold intolerance)
Social Security Disability
Undifferentiated Connective Tissue Disease (UCTD)
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.