I was diagnosed with scleroderma in the winter of 1986, in Calgary, Alberta, Canada. When I was about twenty years old, I started experiencing stomach problems and my fingers would turn a waxy white and feel so cold. I thought I would gotten frost bite on them or something at first.
Over the years I developed lumps on my knees, elbows, wrists and fingers. In 1985, while on vacation in Saginaw Michigan, visiting my husband's aunt with him, and his father, I awoke at 4:00 a.m. feeling fine. When I awoke again at 8:00 a.m. my left arm was swollen and I could not bend it. It was also warm to the touch. Every bump in the road on the trip home was agony.
I was given the wrong antibiotic at first and thought for sure I was going to lose the arm, since it had swollen to twice its normal size. Luckily that cleared up, but it took almost two months.
That started the long era of testing. I was sent for tests in Hamilton, Ontario and it was not until we moved to Calgary and a weeks stay in the hospital and numerous other calcium infections that I was diagnosed with theCREST Syndrome of Scleroderma.
Over the years it has gotten worse. I have had my hand operated on twice to remove calcium buildups, so I could keep on working. I love my job as a chef. Both of my knees have been operated on as well. There are days where it hurts to walk, get into the car, even shift or turn over in bed because of the buildup of calcium in my hips.
In fact I received a call a year ago from the doctor's office that the technician could not figure out what the white and gray shadows were in the X-rays of my hip. I knew, and once I mentioned it, they did too. I do not think there's a chance of removal there, because there's just too much.
I can't take a lot of the medications as I happen to be one of the people who experience side effects to a horrible extent, so I opted to suffer with the pain rather than feel sick all the time. It was a horrible time there for a couple of years because of drug side effects. I am still working and hoping that they will once again do my right hand so I can continue to work. My left hand that was basically free from deposits has now started to develop ulcerations as well.
Between GERD and all the complications of this disease it sure gets frustrating some days, but I figure it could be worse, a lot worse. I feel fortunate that I can still work and do the gardening that I love so much. It hurts to bend and what once used to be simple is now a chore, but the end results make it all worthwhile.
I'm also fortunate that my husband is very understanding and over the years he has been there through good and bad times, and my mother-in-law is a jewel. I know I would not have made it without either of their support. I know it will get worse, but trying to focus on happy times and good things and not myself or my disease makes it easier. I really wish that one day they will find a cure for this.
Email: [email protected]
Story submitted 6-9-02
Story posted 7-11-02
Types of Scleroderma
The story on this page is featured in our book, Voices of Scleroderma Volume 2! ISN.
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.