I found out I had Raynaud's when I was about thirty-one. I wasn't particularly careful about it because the vascular doctor said, "Oh,my wife has it and she just lives with it, just don't be rough when trying to warm up your fingers and toes."
Years later, at fifty-six, my family doctor said he thought I had scleroderma because I was having trouble with my hands, and my fingers looked like sausages. I said to him, "No way, I don't want it." When I found out I had Raynaud's years before, they also tested me for lupus. The two weeks waiting for results made my nerves go haywire! I didn't have it, but while I was waiting, I was looking for any information I could find on lupus and I was also finding info on scleroderma…so I wanted no part of it! The words hard skin and disfigurement kept running through my head. Yikes, my vanity kicked in…and horror!
After a sclero specialist confirmed it, I had to get a good grip on my nerves and let my faith kick in. I have CREST (my letters are, "R"aynaud's, "E"sophagus, and "T"elangiectasia). I already talked about the "R". The "E" is being kept nicely under control with Nexium. Watching my spices and my portions are a terrific help also.
My specialist pokes my tummy and tells me to lose fifteen pounds, even though it should be more like thirty. It is also important to keep my weight down because of my lung function. By that I mean, if we are big, we use more oxygen; it's easier on our lungs if we are smaller.
Now let me tell you about the "T". It's all over my face, but Cover Girl and a little cover stick do an okay job. Did I mention "vanity"? I love to craft, sew, crochet, knit, and a million other things, I refuse to stop no matter how painful. I'll keep searching for the one thing creative that I can still do. \
My fingers are puffy, not painful, just annoying. I've had carpal tunnel in both hands for twenty years and in the past two years have developed very painful arthritis in the base of both thumbs. My latest thing is pain in my lower left leg in the back. And get this, a pain in my lower right leg in the front. No kidding, it really puts the skids on my daily desire to walk.
My husband keeps telling me he's going to slap an abandoned sticker on my forehead…all this is said very lovingly. I'll be fifty-eight this year. The doctor said I've probably had this for ten or more years at least! I've had a great life. I have way more to share. I'd love to help people. I'm faith-filled and it has been my saving grace!
I devour all the information I can get on it. I look for the positive stuff, especially all the exercises to keep flexibility and mobility (mouth, tongue and all.) I see my primary, who is a knowledgeable and supportive doctor. I have seen rheumatologists, and a scleroderma specialist. Most of my information came from the Internet and my primary doctor. I feel like the others don't tell me anything so I can be a guinea pig for their research.
Sorry, I don't want to wait for what may come. I want to bathe with the best soap for this condition. Cream with the best creams for this condition. Take supplements that may be helpful. Eat, or avoid foods that may exacerbate the condition. Raynaud's is a secondary to scleroderma and most scleroderma patients have it. Tell us the best socks, shoes, gloves. What foods play havoc with our blood vessels. I think with a diagnosis of scleroderma should come a script for physical and occupational therapy, at least to train us to help ourselves. They are the specialists? There should be a handout to all newly diagnosed patients. But most of all, as with any other life-threatening disease, the patient should be instilled with hope, not just for a cure, but with the knowledge that with the proper care and self help we can continue with productive lives. They say it's not over till the fat lady sings…and I'm not singing.
Love and Luck To All.
Story edited 12-15-08 JTD
Story posted 01-16-09 SLE
Story Artist: Ione Bridgman
Story Editor: Judith Thompson Devlin
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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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