Now, three years later, I'm not so elated to have learned what that name scleroderma meant. I have just gone on disability from my job. I can't do even simple things like button a blouse, or zip pants. Elastic waists and pullover tops and slip on shoes are the only items in my closet. My hands are the worst. The thumbs are usless, the deformity or claws that I have make me miss the old days.
I have moved in with my sister and her husband, thank goodness. They help me with daily living and have given me a place to stay where I am loved and cared for. I have GERD, Raynauds, Sjogren's, fibromyalgia, and diffuse scleroderma. I was just taken off of Methotrexate Injections after two years due to issue with my labs. I now have to see an oncologist. I am so scared it is not even funny.
I try to stay positive and have courage because it can always be worse! I have had vision problems due to the dry eyes and now have another doctor to visit every month. The pain is really bad most days and it is hard to get up and start moving. My balance is off and my limbs hurt so bad when I put weight on my legs and feet.
Finally having to take disability from work is the hardest thing I have ever done. Working at least kept my mind on other things besides the pain. I don't know what to do anymore!
Email: [email protected]
Story posted 5-18-11 SLE
Story Artist: Shelley Ensz
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