September 21, 2005
... wait, DON'T give me any of those things, PLEASE!
I am a woman in my early 40's who has lived with a few mysterious health problems for almost 20 years. I started with a severe lung infection that just wouldn't go away. It sapped me of my stamina, at 24, and I developed numbness and color changes in my fingers the following winter. I went to my family Dr. and he prescribed antibiotics, which didn't work, so I had to go back several times. I also went to a Lung Specialist, who said I didn't have anything wrong with me. My GP finally ran a test for Lupus and it came back positive so I was sent off to the local teaching hospital. It took several months to get an appointment so I used the time to study Bernie Siegel, take vitamins and stayed out of the sun. When I finally went there they said I was sent "on a wild goose chase". Yay, for me! Some time passed and I realized that I still hadn't regained my stamina and I still had the circulation problem (Raynauds). Looking at the medical books of the period, one disease that came up repeatedly with this condition (Raynauds) was Scleroderma. Sounded just awful! Your skin was supposed to encase you like a "hidebound" book and you'd be dead in 7 years or less, unable to open your mouth or use your hands. Whew! I knew I didn't want that, but without a final diagnosis, how could I be sure? Well, 7 yers passed and I didn't die or harden so I thought I was home free. I had a cousin die of Diffuse Scleroderma during that time and he did harden. I KNEW I didn't look like that! My raynauds worsened to finger ulcers (painful open sores that take months to heal and get infected easily) and I started to get red spots on my hands and face (telangiastica). Then heartburn. I did some interet research and found that there had been great advances in Scleroderma research over the last 20 years and one of the notable things was that it was now recognised that there was a "limited" form of the disease. Oh, oh! It had the symptoms of: Calcifications, C; Raynauds, R; Esophageal problems, E; Sclerodactly, S (hard finger skin); and Telangiastica (red spots). I had 3 of those items. But not all, so, hey, still safe, right? Wrong! More research, you only need 2 of the 5 for a diagnosis. Supposedly. This leads me to the turning point at which I will ask my readers to stay tuned. I intend for this blog to focus on the difficulties one can face when dealing with established medicine with this medical condition and the helpful things that you can do for yourself. I also intend to share the resources that I have found helpful in my research into this medical condition. LESSON 1: Limited Scleroderma is not a disease, it is a medical condition that can be lived with and, hopefully, eased by science and lifestyle. Stay tuned!
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