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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Staying positive with dermatomyositis
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Pain Never Sleeps
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Why, why, WHY?
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Waiting
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Leg and Arm Exercises for Myositis
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I’m…so…FRUSTRATED!!
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My Life as a Vampire
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“You’re pregnant, get used to it”
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Long time coming…
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Poly Life
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Feeling like you need your Caregiver to substantiate...
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The pain med taper debacle
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Here I am
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A Light in the Dark: My Realities with...
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Treat my symptoms, please…but don’t patronize me
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Advocating for Yourself in the Midst of Insurance...
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New symptom whack-a-mole
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The Heart of Healing
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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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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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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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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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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New symptom whack-a-mole
New symptoms are not only an indication of a myositis “flare”, sometimes new symptoms mean an emergence of overlap of other conditions.
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Here I am
Living the #MyositisLIFE for many of us.
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The Other Pain of Living With Myositis
I’m feeling more and more isolated and alone because of this illness. I’ve held off writing publicly about it because then there’s pity and the...
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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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“You’re pregnant, get used to it”
My pregnancy journey with dermatomyositis.
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Advocating for Yourself in the Midst of Insurance Prescription Denials
We explain and highlight a personal account of how one patient fought the insurance company trying to deny a medication for myositis.
