Tiny Hooves, Big Therapy
Suddenly I looked at my husband in the New Orleans hotel room at a myositis conference and said, “Maybe I could learn to drive a...
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.
Most Shared
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Unexpected lessons learned while facing my new reality
I don’t want dermatomyositis to define me or take over my life, but sometimes I’m vulnerable and not the strongest version of myself.
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Kept Promises – “Love Never Fails”
My husband honors his vow; in sickness and health. But for me, when will I no longer grieve the person I once was? The girl...
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My Life as a Vampire
I am not a vampire. However, at the direction of my dermatologist, I am living a “full vampiric life.”
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What does chronic illness mental fatigue feel like?
I’m overwhelmed. I’m scared. I’m tired. I’m tired of new symptoms, new scares, new tests. But I am not alone!
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Treat my symptoms, please…but don’t patronize me
Our symptoms and histories aren’t two second sound bites. We have complicated health histories and they matter, both for us to be heard and also...
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The pain med taper debacle
The opioid crisis is real and should be addressed, but there is no excuse for the damage it has done to people with incurable pain....
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Leg and Arm Exercises for Myositis
Ryan demonstrates some myositis leg and arm exercises and techniques he has used to help him regain strength.
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Long time coming…
These are the stairs from the condo that my family and I stayed last week for a vacation at the beach. "To be able to...
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Balancing rest and recovery with myositis
I must learn to accept that I cannot rush my body. It needs rest. I cannot change this. I can change my attitude to this...
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“Save Me” a song about #MyositisLIFE
"Save Me" by Alyssa Smith is a song about myositis, released on Rare Disease Day 2019.
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Finally
I don't let this disease define me. I respect it. I acknowledge it. I am actually proud at times knowing it tried to break me,...
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Easy tutorial for CDC recommended mask
Emily walks us step-by-step through making a fabric mask using a technique and design approved by the CDC.
