Welcome to our world
We are going to be here for a while. So, make yourself comfortable. Dig out those blankets for the sofa. Stock up (but don’t hoard)...
#MyositisLIFE - Page 2 of 6 - Myositis Patient and Caregiver Experience
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Finding my happy place with IBM
Having a disease like IBM has made doing almost everything I once took for granted very challenging. Here is how I have managed to keep...
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Back to square one?
I feel like I am back to step one, after nine months of pushing through. Fighting every side effect. Fighting every symptom. I’m tired now.
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Coronavirus concerns with Myositis
Coronavirus (COVID-19) and myositis, resources to keep you informed and protected. Practicing good hygiene and not panicking are important tips.
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Volunteering is a great thing for the mind!
Jason details how volunteering with Myositis Support and Understanding improved his attitude and depression and helped him find a passion in helping others.
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Parenting with the winter yucks
Parenting with myositis is no different than parenting without. There is no time out, no free parking! It just has a few more obstacles.
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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...
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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...
