When I was eighteen years old, I was diagnosed with linear scleroderma. It changed my life because it affected my left arm by leaving a big shiny scar on the outside of it.
People always asked me what happened? They would ask if I had been hit as it looked like a bruise or if I had been burnt. I used to tell people the truth when I first was diagnosed, but then it became embarrassing as people thought that it was contagious. So I made up a story that 'when I was little, a pot of boiling water fell on my arm.' People seem satisfied with that.
The pain that I would feel in my left arm was very hard to describe as it hurt from the inside rather than on the surface. But on the outside, it would sometimes become very itchy and inflamed. My doctor prescribed methotrexate which I took on a weekly basis. I was not one of the lucky ones with this medication as I became very ill and sick all the time. I had no immune system and picked up every bug that went around.
I lost over six kilos (about thirteen pounds) in a month, and weighed only forty-eight kilos (about one hundred and five pounds). I am one hundred and seventy-four centimeters (about five feet and seven inches) tall. People would often comment on my weight and refer to me as anorexic. I was too embarrassed to tell them that I was ill and on very strong medication.
My feet were always cold and sometimes they would appear almost black in color. If I ever got a bruise on my leg, it would stay there for months. My linear affected arm was much smaller than my other arm, and I became very self-conscious when wearing singlets (tank top) or tee shirts.
My health was so bad that if I had a late night, by the next morning I would have an infected throat or a bad cold which would eventually turn into the flu. I was always on antibiotics and trying new sorts of medicines to help me cope with the methotrexate, but generally, I had to cope with the nausea and side effects twenty-four hours a day.
When my doctor told me that I was going into remission, I was over the moon. My whole family was happy. But less than six months later, I was told that it was spreading again.
I continued with my life as normally as I could, trying to build up my immune system. I found that if I cut the circulation off in my arm with a watch or carrying a bag, my arm would flare up and become very itchy. My skin looked like I had lots of red lumps on it. My condition was more annoying than anything, but the medication that was used to treat my disease was the main thing that I could not cope with.
Now I am twenty-one-and-a-half, and I have been off my medication for over a year. I have been in remission for the same amount of time. I have to have check up appointments regularly and monitor any changes that may occur, but other than that, my life is back to normal. My immune system is a lot better now, but I have to be careful not to get sick as a simple cold still turns into a very bad flu.
My main concern these days is my legs and feet. They are always stone cold due to bad of circulation, and if I ever get a cut or a bruise on my legs, it takes months for it to heal.
The scar on my arm still bothers me, but I am very lucky that that is all I have. Others have the scar on their face or other parts of their bodies.
I would love to speak to anyone who has a condition that is similar to mine. None of my friends or family really understand the physical and emotional effect that this has had on me. I never appreciated my health until this. I would love to be completely healthy.
New email address needed 07-19-06 SLE
Old Email Prefix: lmcgowan
Story posted 7-15-03
Story Artist: Ione Bridgman
Story Editor: Judith Devlin
ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series.
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