Pregnancy and Dermatomyositis
My mystery disease actually shows up as a result of the loves of my life. A mystery that is so worth each 9 months. No...
#MyositisLIFE - Page 6 of 7 - Myositis Patient and Caregiver Experience
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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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That D**n Pay Stub
I put it in the back of my drawer...thinking that would lessen the sting of seeing it and being reminded of all I’ve lost...
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Myositis ‘n Me
I have Inclusion Body Myositis (IBM); a rare and degenerative muscle wasting disease. It is an autoimmune disease with my symptoms starting when I was...
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A Day in the Life of Someone with Myositis
This was more like “A Month in the Life” since I filmed almost every day this month for Myositis Awareness. I am extremely fortunate to...
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Adventures with Polymyositis: My experiences and recommendations
At 63, I thought the weakness was age-related until a vacation in Europe, where it became increasingly difficult to rise from a seat and climb...
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Myositis and Motherhood: We are capable
I have had dermatomyositis, a rare, autoimmune and chronic illness all my life. What’s important, to me, isn’t my limitations. Rather it’s about showing her...
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Fay’s Journey with Polymyositis
I had a trach, feeding tube, and had lost 26 pounds of muscle mass with the onset of Polymyositis. I came home with the feeding...
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In sickness and in health
In the 11 years that I have had Dermatomyositis, I’ve lost weight, gained weight, lost hair, sweated a lot, mastered the art of napping, had...
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Getting Past The Physical
As I write this, I realize that a year into this diagnosis, I am finally starting to believe that I have not lost myself. In...
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Faith in the Midst of Dermatomyositis
The difference in being sick with this disease and being healthy is having to make choices or continuously think about things when the rest of...
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My new life with Polymyositis
People look at me and say, “Oh there is nothing wrong with you. You are exaggerating or you want attention.” Well, we may look great...
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5 Week Road trip to Yellowstone with IBM Adventurers
Here are our lessons learned for traveling with an IBM’r who requires a patient lift for transfers: Finding suitable hotel rooms was the biggest challenge....
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Confessions of a Myositis Mom
It is terrible to feel as if you have disappointed people you love, failed to follow through on promises, or are just plain missing out...
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Polymyositis: How to Soar Above the Disease
Before polymyositis (PM) I was like a caterpillar just consuming life. I prided myself on being busy and being the queen of multitasking. I would...
