I was diagnosed with scleroderma/pulmonary hypertension, in 1999.  It was progressing so fast that I was near death, thank God for my doctors. I had to take cytoxan infusions once a month and other medications.  It slowed it down but I am now on tracleer it has helped my lungs and the pulmonary hypertension.

I had to go on disability.  I still have a lot of pain and my breathing has stabilized. I am on oxygen and the inhalers and several types of strong pain medicine. My arms and legs are tight and dark and I am very dry.  The rheumy gave me evox (probaly spelled wrong) for dry mouth.

Some days I am so tired I have to stay in bed. My life changed because of this disease. but I still thank God for being alive and coping with this unusual disease.  I too had never heard of it and went through so many test and problems its too long to write it all.  I was 46 when diagnosed and I'm 51 now. I just take it a day at a time.

My husband is very supportive but sometimes I think he's in denial, my children son and daughter are very supportive and my sisters and brothers. No one knows how I really feel but another person with scleroderma - please feel free to e-mail me because I have thus far never talked to anyone where I live that has it. I know there are people out there with it but I have not met anyone with. please write me.