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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Welcome to our world
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Finding my happy place with IBM
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Back to square one?
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Watch An Introduction to the PRESIDIO Clinical Trial...
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Coronavirus concerns with Myositis
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Volunteering is a great thing for the mind!
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Parenting with the winter yucks
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Long, cold, myositis winter: The realities of living...
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Infection watch!
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Tiny Hooves, Big Therapy
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The travels and tribulations of going on holiday...
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Surviving the Holidays with Myositis
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Facing rare disease alone
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Caring for Caregivers Webinar
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Surviving the Holidays with Myositis
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Watch Intro to Ra Pharma & the Potential...
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Kept Promises – “Love Never Fails”
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Take a hike Myositis
I Care
I Care -
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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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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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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...
