Kathy GR: Scleroderma Patient
The doctor who had been doing the nerve blocks had told me I had scleroderma, but never mentioned that I needed to see a rheumatologist.
In 1994 I was hospitalized with my blood pressure going through the roof, my systolic pressure was over three hundred!
I was in intensive care for two weeks and the doctors were unable to tell me why my blood pressure had soared so high. They felt at one time there was a blockage going into my kidneys. They did a catheterization and found nothing.
After three weeks of being in the hospital, I was released with no diagnosis. I felt so weak, just walking from my kitchen to the living room exhausted me. I was sent to a nephrologist (a kidney doctor) and he diagnosed me with hypothyroidism. Nothing new was discussed.
In 1996 I got this hard piece of skin on the pointer finger of my right hand. This was very small, but painful. It really bothered me while bowling. I was given a name and telephone number for a local dermatologist and I went to see him.
He gave me this bandage-thing and told me to put it on during the day and take it off at night.When I took it off, it t a wad of skin from my finger. Within two weeks the end of my finger was so sore that when I bumped it, it took my breath away.
At my second appointment with the dermatologist, he was quite worried. He explained to me this looked like a finger ulcer due to scleroderma. I had never heard of this before. He sent to a pain management doctor. The next thing I knew, he was doing nerve blocks on me three times a week.This made life almost impossible, since I could not work and my mother had to take me in for the treatments. After a month of these blocks, only one or two treatments actually worked, and I had had enough. I demanded to have the finger taken off, and I found a surgeon who did remove the tip of my finger.
The doctor who had been doing the nerve blocks had told me I had scleroderma, but never mentioned that I needed to see a rheumatologist. He never told me to keep my hands warm to ease the pain. He told me nothing except just come back for more nerve blocks and take heavy pain medications and antidepressants, and pills to help me get up and go. I was very very lucky to not become addicted to any of these drugs.
I then found some information on the Internet about scleroderma. Several sites said most people die within ten years of being diagnosed, the pain was unmanageable, and it would be a painful death. I was thirty-seven at the time and I thought my life was over.
I made an appointment with a rheumatologist and he was nice enough to straighten it all out for me. I am now forty-three. I still get painful finger ulcers, and I just recently had a heart attack. No one can tell me if the heart attack had anything to do with the scleroderma.
There could have been more details to my story, but it hurts my fingers to type. I hope this story helps someone, now or in the future.
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ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.
ISN Story Editor: Judith Thompson Devlin
Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.