Syl: Systemic Scleroderma/CREST/Pulmonary Hypertension/Sjögren's

It seems that I was a healthy person. My worst problem was being overweight. Even though I was overweight, I still had good blood pressure and good cholesterol. My husband teased and said it was the cholesterol of an athlete.

In March of 1995, I started having trouble catching my breath and walking short distances really made me feel winded. I went in to the doctor and they ran tests and told me I had congestive heart failure. They told me I would need to be put on oxygen twenty-four hours a day. I was really surprised. I was put on a bunch of medications and the oxygen.

About a year later, we were getting ready to have dinner and when I took a bite of it, I could not swallow. I tried to drink water and could not keep it down. I mean, not even a drop of water. The next day I went in to see a gastroenterologist. He did an endoscopy and said my stomach was a mess. My diagnosis was acid reflux. More medications followed.

In February of 1997, I woke up having trouble with my leg. I could not walk on it. I was having horrible pain in the back of my knee. I went in to the doctor and he x-rayed it and said nothing was wrong with it and gave me a prescription for pain pills.

Later that day, they called me from the orthopedist and told me that I had a fracture in my bone and I should come in to have it casted right away. I was surprised and went in. The orthopedist looked at the x-rays and said that it was not broken, but I had a slight bit of extra bone in there that was causing the pain.

His wife was his physician's assistant and she was to do the paper work on me. When we were in the office and she was getting my information, she noticed that my hands looked really blue. I told her I was on oxygen and had not brought any with me and that was probably causing it. She asked if it happened often and I said yes. Then she wanted me to give her some blood for some testing, if I did not mind. I said no and we ran blood tests.

She called me in the next day and asked if I could come in to see her. I went in and she told me that the blood tests had come up positive for scleroderma. She said that it was an autoimmune disease and that she had made an appointment for me with a rheumatologist and a new doctor we had that was a pulmonologist. She said that he would probably be better for me than my primary care doctor I had at the time.

I went home wondering what scleroderma was. I went to the library and looked in medical books and found out that I had approximately two to five years to live. I was terrified. I was not ready to check out of this world. I had not even seen grandchildren then.

I was so worried and anxious to see the doctor. I had a million questions for him. Well, they did not have very many patients with scleroderma (SD) and were new at this also. I got brochures and studied everything I could on it.

It was not until March of 1998 that I got online and was able to find out more information. I was thrilled to see that I was not alone. There were other people in the same boat as I was.

Now I am one of the moderators of SD World, which is a free email list where those who suffer from scleroderma and other autoimmune problems gather in a warm, friendly forum for an upbeat, open and free exchange of support and information, and where newcomers are always welcome.

~ Update 3/10/00 ~

To read more about Syl, please visit her new web site My Home Page and her story My Life Since Scleroderma. Her Poetry includes Scleroderma. Syl also wrote the poetry for the ISN Caregiver's E-Cards. SD World is featured in the ISN's Hope on the Horizon short online FLASH movie.

She had been admitted to the hospital last Saturday after her blood pressure took a big dip and she was very dehydrated. They had gotten her stabilized, or so we thought, but today her body started shutting down. There was nothing they could do.

She requested no services. She will be cremated in Gallup and her ashes sprinkled there.

jude