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...
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...
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...
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...
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...
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...
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...
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...
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....
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...
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...
In order to understand how Prednisone changes a person’s life, you need to know what physical activities their life consisted of before. What was modified...
We know we cannot avoid stress; it’s simply a part of life. Whether it’s stress over our finances, relationships, job, health, or the health of...
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