Myositis Awareness Month Honesty
I admit that I’m very very tired. It’s been a long 6 years of steadily worsening symptoms, especially pain and weakness, and lung involvement again...
#MyositisLIFE - Myositis Patient and Caregiver Experience
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Navigating ambiguity, building resilience, and celebrating wins: what I have learned after three years with a rare disease
We are all doing our best to navigate ambiguity and build resilience, and we are trying to find joy and reasons to celebrate - some...
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Rituximab – what to expect
Getting a rituximab infusion and not sure what it will involve - I share my recent experience
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My Top 10 Practical Tips for Living the Myositis Life
We can learn so much from each other so I thought I'd share some ways I have adapted to living the #MyositisLIFE and I hope...
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Preventing frailty: What Myositis Patients CAN Do
Important takeaways from Dr. Conrad Weihl's presentation, "Navigating the Long Term Effects of Myositis," specifically on movement/exercise and nutrition for building and preserving muscle mass...
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I Forgot to Grieve
Lisa Sniderman shares the story of her realization that we actually are grieving because of our chronic, rare illness and realized she hadn't grieved her...
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Rainbow
My niece is 18 and has never seen me healthy. She has looked to me for strength and determination as I fight this tiresome, horrible...
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Reflection – 20 Years Living the Myositis Life
I am so thankful that each day I face with Myositis, I am given the strength to keep going, one day at a time.
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When your body says, “NO!”
In the process of dealing with Dermatomyositis, there are flares, painful aches, and weakness. I try to own it. Boss it. Then my body says,...
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Vaccines, Freedom, and Loss of the Pandemic Cocoon
I hope by telling my story it helps to normalize that it is okay to be scared, to even miss the time of being “stuck”...
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But Muscles I Love
I suffer from Inclusion Body Myositis, so I decided to write this poem last year after starting to experience some of the symptoms of this...
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Returning from rock bottom
People keep telling me how resilient I am, but really, I'm just too stubborn. Too stubborn to take no for an answer. Too stubborn to...
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Coronavirus Precautions: Where Freedom and Empathy collided
Any interaction with the outside world is fraught with danger when other people in the world are not careful, because of the insidious and invisible...
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‘Anti-Maskers’ Actually Infringe Upon My Freedom
"We take our shoes off, we go through metal detectors, we do so many things that “infringe” upon our previously understood everyday freedoms. But we...
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Support and Understanding
Support and Understanding, featured in MSU's 3rd Annual A Day of Remembrance, speaks to myositis patients and caregivers both, letting us all know that we...
