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...
#MyositisLIFE - Page 6 of 7 - Myositis Patient and Caregiver Experience
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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...
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Prednisone: Friend and Foe
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...
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Stress and Myositis
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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Staying the Course
Although everyday life seems like a mad dash to the finish line honestly it’s all about staying the course and that is often easier said...
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Coping with Loss
Anyone dealing with a chronic health condition (whether as a patient or loved one/care partner) can tell you, illness makes you think about things that...
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Myositis Awareness and Mental Health Awareness Months Meet
Myositis and depression were not only affecting me, but they were also affecting my parents, my partner, my family members, and friends. The fact that...
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Road to Diagnosis: Acceptance and Mission
It took me five years to get a diagnosis, polymyositis, and different parts of my proximal muscles were getting weak every year. It started with...
