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...
#MyositisLIFE - Page 6 of 6 - Myositis Patient and Caregiver Experience
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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...
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Care Giver, A Poem
For Mavis, Love Stella. A Caregiver poem for a dear friend. I am the care giver you see me every where, but what you don’t...
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This is our life now
Inclusion Body Myositis does not change the way you love your parent. It should not change the way you look at your parent. I had...
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Sadly my mum lost her battle as an IBM warrior
Mums journey with inclusion body myositis was a very difficult one.Following her first fall mum noticed she was falling more and more often, she saw...
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An Open Letter: Dear Dermatomyositis
In January 2015 I was diagnosed with Dermatomyositis at the age of 36. Of course, I never heard of it. My initial reaction was mixed...
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Myositis Awareness Day And My Husband’s Diagnosis
I thank God for each day that I’m able to love and support him the way that he’s always loved and supported me. We still...
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A Few Words for the Moment Before Myositis
Myositis Awareness Month got me thinking…and really, reflecting about a time before my initial flare-up almost three years ago, when Myositis wasn’t at the forefront of...
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Trapped
I was diagnosed with dermatomyositis (DM) in early 2015 when I was 22 years old. I always considered myself very healthy up until I was...
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“Save Me” a song about #MyositisLIFE
"Save Me" by Alyssa Smith is a song about myositis, released on Rare Disease Day 2019.
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The Most Suckiest but Best things about my Mommy having Myositis
I feel peaceful because I usually behave well because I know how hard things are for my mommy. I am peaceful because I have learned...
Hi, I’m Sage and I am nine years old. My mommy has dermatomyositis. I have a list about the best and suckiest things about having a mommy with Myositis. (originally posted in 2015) Q1. What is the suckiest thing about my mommy’s disease? Having her stay in bed all day because of her pain, migraines, and...
