Hi my name is Kim and I live in a small town in Kentucky. I am 25 yrs .old I have two small children who are two and seven. I have had scleroderma for three yrs. I am also a single mom.

When I first started getting sick, my stomach was upset all of the time and I was always really tired. One day while at work a fast food restaurant where I was one of the managers I was unloading a truck which came at 3:30 on the morning.(fun-huh? I noticed after being in the freezer for about 15 minutes that I could no longer feel my hands at all, they were blue and would not warm up even after I came out of the freezer and warmed them under the hand dryer - hot water - the hand dryer again… Nothing was working at all .I began shaking and was taken to the hospital and they gave me medicine to calm my shaking down but never gave me anything to warm my hands but warm towels. It really didn't work-but what could I do?

Soon after my family doctor sent me to see a hand surgeon he said he thought it was Raynauds because ulcers were also coming deeply onto my hands it was very painful to do anything at all. I went to the hand surgeon and he confirmed to me that I had systemic scleroderma, and wanted to do surgery right away. Of course this was all new to me and I did not want this not with a small child already ---how would I ever take care of him(it was called micro-surgery). I still have never had it done. He sent me to a rheumatologist who would soon become one of the best things that came into my life. She was very kind and tried to explain everything to me instead of holding back. I really appreciated that. We have tried everything-relafen-nifedipine-coumadin-cortizone shots (for the pains in the rest of my body.)

Today I have a new respect for life. I have 15% lung involvement and soon I will be starting cytoxan radiation treatments-1a month for 12 months, I am very scared over this. I have never heard of this before in scleroderma patients. My doctor says that it will stop further progression of my lungs and nothing is easy. I'll give it a shot the best way that I possibly can.

I would be very interested in hearing from others and what scleroderma treatments you may have had and what you are taking for it now. I would love to hear from anyone who has ever had the cytoxan radiation done. The word itself scares me to death. Well, thanks for reading my letter I do appreciate it. Hope to hear from someone soon. You can e-mail at this address, and I check my mail daily.