Long, cold, myositis winter: The realities of living with myositis and germs
Viruses become personified. I see them as mean little soldiers standing up on door knobs ready to attack me. I watch them float through the...
#MyositisLIFE - Page 3 of 7 - Myositis Patient and Caregiver Experience
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Infection watch!
It seems silly going into ED for what turned out to be just a cold, but such is my life now. You never know if...
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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...
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The travels and tribulations of going on holiday with chronic illness
It could have all gone horribly wrong, but it didn’t. And yes, a lot of that is luck. But a lot of it is also...
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Facing rare disease alone
Somehow, when you are sick, there is that feeling of dread that comes with being single that just makes you feel like this is it....
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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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Take a hike Myositis
It can be scary . . . because if I don't read my body's signals right, I could get stuck.
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Going out of my head
Over the last 3 years of dealing with necrotizing autoimmune myopathy (NAM) I have really tried to get better at asking for help. It's still...
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Global Genes Patient Advocacy Summit Highlights Video 2109
Seth Rothberg, co-founder of Our Odyssey, and Lynn Wilson, VP of Myositis Support and Understanding (MSU), having some fun at the Global Genes Patient Advocacy...
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Month Five with Dermatomyositis
I’m starting to be able to leave the house again after a couple of weeks of being really exhausted and housebound. So, things do pass....
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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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You must be doing fine!!!
This image represents my determination, stubbornness, and desperation for something normal and happy in my #MyositisLife.
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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.
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MSU participates as sponsor of the 2019 TMA Annual Patient Conference
Check out some photos we captured participating as a sponsor of the 2019 TMA conference. Find information about our sponsors and partners that also attended....
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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...
