Learning to live with the ups and downs
If you are reading this in good health, I wish you more of the same. Those of you, like me, who are currently unwell, or...
Myositis Patient Experiences
Myositis Patient ExperiencesLearn about myositis from those who live with it every day. We learn a lot from the experiences of others.
Featured
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The Healing Power of Creativity
How creative outlets such as art and writing have helped me cope with difficult things such as Dermatomyositis.
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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...
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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...
