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Have you ever had someone tell you you “must” do something for your illness, but your doctor has advised against it? Or, had someone say, “I know someone with [your illness], and he/she is really healthy.” [implying, “what’s wrong with you?”] Or had one person say, “I don’t have any problem taking [medication],” when another…

The first book about chronic illness that I wrote, with rheumatologist David Hallegua, MD, was called “Taking Charge of Lupus: How to Manage the Disease and Make the Most of Your Life.” This was not the book’s original title; I’d titled it, “Lupus in Daily Life.” But, my very wise editor had a better idea,…

I saw it the other day. Had to blink and clear my eyes to make sure I’d seen correctly. Yup. It was there. Plain as these springtime-lengthened days. What was it? An advertisement for bathing suits. What is a lupus patient who cannot go out in the sun, let alone go to the pool or…

Yesterday was a tough doctor day for me. I had to have retests of my retinas for a problem that may or may not be related to one of the medications I take to treat lupus and keep it (moderately) at bay. Unfortunately, the tests were, once again, abnormal, and I’ll be seeing another doc…
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