My Life as a Vampire
I am not a vampire. However, at the direction of my dermatologist, I am living a “full vampiric life.”
-
Take a hike Myositis
-
Going out of my head
-
Global Genes Patient Advocacy Summit Highlights Video 2109
-
Month Five with Dermatomyositis
-
Unexpected lessons learned while facing my new reality
-
You must be doing fine!!!
-
Getting up from a Toilet with Myositis
-
MSU participates as sponsor of the 2019 TMA...
-
Balancing rest and recovery with myositis
-
Getting Up from a Wheelchair with Myositis
-
Staying positive with dermatomyositis
-
Pain Never Sleeps
-
Why, why, WHY?
-
Waiting
-
Leg and Arm Exercises for Myositis
-
I’m…so…FRUSTRATED!!
-
My Life as a Vampire
-
“You’re pregnant, get used to it”
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
-
-
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.
-
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!
-
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...
-
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....
-
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...
-
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,...
-
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...
-
Getting up from a Toilet with Myositis
Ryan demonstrates what he has learned living with myositis to help to rise from a low toilet using some practical tips and tricks.
-
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.
-
Here I am
Living the #MyositisLIFE for many of us.
-
Leg and Arm Exercises for Myositis
Ryan demonstrates some myositis leg and arm exercises and techniques he has used to help him regain strength.
