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JAN’S PERSONAL EXPERIENCE OF LUPUS
"Looking back," says Jan, who with her husband operates a computer-based design and promotion service in upstate New York, "I may have had a problem for years before it was diagnosed. I had a lot of things wrong from time to time, but I never connected them. The first thing I remember was a respiratory infection like none I'd ever had before. It went on for months. I went to three different doctors, all of whom concluded it was some kind of virus and none of whom could do anything about it. Eventually, it went away."
"Next," she recalls, "my feet started hurting. And there were changes in my menstrual patterns. My gynecologist said maybe it was early menopause—but I was only thirty-six. Then everything went back to normal—until I started getting wrist pains, which I figured had something to do with working at the computer. Then the foot pain came back, and then pain in my fingers. Then, my hair started to get thin, and I thought, well, I was forty by now, and my mother's hair has been thin for years, and I figured I was getting older. I decided that also accounted for the fact that the skin on my face was sort of dry and reddish. I was tiring very easily. And I was urinating very often—which could be a symptom of diabetes, except my husband, Charlie, has diabetes, and I tested myself with his glucose monitor, and it wasn't that."
"Well," she says, "my doctor didn't put these things together, either. I told him about the pain in my hands, and he said that often happened to women my age. About feeling tired, he said, 'You're no spring chicken.' He said I should talk to my gynecologist about the frequent urination, that it might be something called 'weak bladder syndrome.' I did, and my gynecologist said no, it wasn't. This was right before Thanksgiving, a very busy time for us, because clients are doing holiday promotions. And we had friends coming from out of town for Thanksgiving. Now, I am not the kind of person who normally lets anyone help out in the kitchen—but the pain in my fingers and wrists was so bad, I really needed help picking up pots and pans, and I was grateful for it."
As in Connie's case, it was another specialist who suggested the possibility of lupus to Jan: "I finally realized why I was going to the bathroom so often: My mouth was terribly dry all the time, and I'd gotten into the habit of keeping water, or juice, or a soft drink next to me all the time—next to my computer, and next to the bed at night—and I was drinking all these extra fluids, so of course I was having frequent urination. I'd also developed terrible gum problems. On my next visit to the dentist, he found some ulcers in my mouth—which I hadn't even been aware of, because they didn't hurt. I told him about my talk with my internist, and about some of my other problems. He said, T think you may have lupus.' He suggested I see a rheumatologist."
Jan's dry mouth may suggest a problem that plagues an estimated one in twenty of those with lupus, a condition known as Sjogren's syndrome.
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