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 Tesse Muldoon Myositis has had a profound impact on my life in many ways. After seven years of odd skin rashes and a number of other autoimmune conditions, I was diagnosed with cancer-associated dermatomyositis in 2017, and it drastically changed my path. Before becoming disabled, I was a certified nursing assistant (CNA) and was…
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By Julia Nickerson Noriel Cunanan lit up every room he entered. With his radiant smile and a generous, inspiring spirit, he brought energy and optimism wherever he went. A devoted friend, he always offered a helping hand, lifted spirits, and sparked fresh ideas. His battle with myositis began suddenly with a rash in late February…
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