 I am 55 and was diagnosed with CREST Syndrome in 1990. At the time, I was an elementary physical education teacher at a primary school and taught about 300 5-10 year olds a day. We were living in the mountains of North Carolina, near Asheville. I had a bad sinus infection and when I took penicillin for it, I suddenly swelled in all my joints. I had to have prednisone to bring the swelling down. My doctor was very concerned because when they started running blood tests to find the reason for the penicillin reaction, I was getting a very high reading of my ANA. Like off the scale. She couldn't figure it out; and sent me to a rheumotologist in Asheville. After reading my chart and doing his own tests and seeing the red dots on my fingers that are such a visible sign of CREST, he told me the news.
He was so cute. He asked if I wanted to know if I wanted the good news or the bad news first. I said the bad- he told me I had a chronic condition called CREST which was an anacronysm for five different conditions. The good news was I had a better chance of getting hit by a truck than I did of dying of it. The parts that really effect me are the Reynaud's Syndrome and some scleroderma. I had to take early retirement from teaching (27 years) because I just couldn't take the kids out on those cold winter days any more. The scleroderma has effected my right hand and around my mouth. I notice it more than anyone else does. The doctors told me when I went to the University Medical Center in Charleston to see Dr. LeRoy that I had probably had the disease since I was young, but because I had always been so active, I thought my aching joints and muscles were due to overwork, not the disease. God knew what he was doing when he made me a gym teacher!! I am retired now; but have a little part time job two days a week as a hostess at a model home. It is not difficult and I enjoy it. We live in a duplex villa in a complex of 400 units.
I try to take a nap or at least rest every day for an hour. I also try to stay as stress-free as possible. Both of those things can cause me to swell or have very painful joints. I can't open bottles any more and getting up from being on my knees is really quite difficult. I now have only 60% capacity in my lungs where the oxygen and carbon dioxide is exchanged. But that doesn't stop me from doing what I want to do. I don't eat as much as I used to; and I did lose quite a bit of weight when we moved down here. Now I stay about the same.
I take tranzene every night to help me sleep. Otherwise I feel like my nerves are going to jump out of my skin. I have two grandchildren down in Miami that I see every few months. One is 5; the other 2. I always overdo when I am with them; so now I stay in a motel when I go. That way I can get my nap in and some quiet time for me. I would love to talk to someone who does have CREST or someone with Reynaud's. I always feel like such a fool when I am in a turtleneck, long sleeve shirt and everyone else is in shorts!! You can reach me at: kennedy@gte.net Copyright © 1996 Pat Wilkins |
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