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By Dorothy Vetrano In January, Shawna Nielsen posted about her “Top 10 Tips for the Newly Diagnosed.” One of her tips was to create a medical binder. I’ve done this, and I highly recommend it. It has become a lifesaving tool for me. Upon hearing the news of my dermatomyositis diagnosis back in 2020, I…
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By Mike Matthews At the end of 2021, Cambridge Dictionary announced their Word of the Year was “perseverance.” On top of all the profound collective challenges that everyone is currently experiencing, the myositis community has the added personal crucible of managing a chronic disease for which there is no cure. Despite the best efforts of…
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By Mike Bradbury Having lived with IBM for more than 20 years, I have a few suggestions for making the journey easier. [Editor’s note: Most of these tips are good advice for anyone, even if you don’t live with a chronic health condition.] 1. Do your chores. As best you can, continue your normal routine,…
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By Kim Murray RD, LDN Inflammation is your body’s natural way of protecting itself. If you scrape your knee, for example, the redness and swelling you see on the skin around the cut are signs that your immune system is working to heal the injury. But when low level inflammation doesn’t go away and becomes…
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When you’ve just been diagnosed with a rare, debilitating, chronic condition, it can be hard to find your footing. The whole terrain seems to be different, unfamiliar, confusing. Here are 10 tips for first baby steps on your myositis journey from a nurse who knows the territory well. Shawna Nielsen is a registered nurse who has…
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