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The cruelest fact about autoimmune disease is that its symptoms may strike out randomly. Stomach cramps and a sudden fever of 103 can, without warning, dismantle the day's plans.
"Our motto," said Elaine Morgan, "is carpe diem: 'Seize the day.’ Sometimes it's carpe momentum: 'seize the moment.' " Homebound now after being diagnosed with scleroderma three years ago, she said, "I live by philosophy right now. I have scleroderma but it doesn't have me."
Marie (fibromyalgia, with lupus as a secondary disease) still maintains her job of 17 years but, "It takes all my energy to do my eight hours a day. One morning I spent an hour trying to get my teeth brushed so I knew I couldn't go to work. 1 pace myself.”
The up-and-down nature of autoimmune disease makes it hard for families and friends to realize that the suffering is real. The group members commiserated with one another about their "lack of credibility" at home and at work.
Thomas described one of the anxieties of being at the whim of a capricious disease. "It's like being diagnosed with cancer. With every ache or pain you wonder if that's it. And when we're having a bad day, nobody understands. They don't have to live it."
As he was talking, Thomas' watch alarm sounded, alerting him to take his medicine. If his insurance did not co-pay, his monthly medicine bill would total $1,000, he said.
Ann said, "Always with the blood and urine tests, you're afraid they'll say your kidneys are involved, or your brain or your
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