Hi, my name is Mark and I was diagnosed with systemic scleroderma in 2003.
I first noticed Raynaud's in the early 1990s, but I had no idea what was causing this numbness and discoloring of my fingers. As time went by I noticed more fatigue and joint pain thinking nothing of it, because a man has to earn a living. I continued this until I could no longer force myself to work.
It wasn't until 2003 when I finally saw a doctor. They told me I had scleroderma and that I would live maybe five years.
By 2004, I had to move in with my dad and he helped me through the worse months. I could not do anything for myself. I was in and out of hospitals because of internal problems and I was ready to give up.
Today I thank my dad and the doctors for their hard work and putting up with me.
At one time my pain was so intense I had to take a lot of painkillers daily, not to mention handfuls of other meds. I feel the cytoxan helped me get to where I am at today.
My biggest issue now is loneliness and depression since there are no support groups in my area. I only wish I had a significant other to help in my day to day living.
Scleroderma has changed my looks drastically, so I am on my own. My weight is down to one hundred and twenty pounds, I used to weigh one hundred and ninety pounds.
This story took me forty-five minutes to type, but at least I am still fighting this thing called scleroderma.
To those of you new to this disease please do not give up, there is hope.
Email: [email protected]
Story edited 07-28-07 JTD
Story posted 08-17-07 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
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