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...
#MyositisLIFE - Page 6 of 6 - Patient and Caregiver Experience
-
-
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...
-
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...
-
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...
-
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...
-
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...
-
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...
-
“Save Me” a song about #MyositisLIFE
"Save Me" by Alyssa Smith is a song about myositis, released on Rare Disease Day 2019.
-
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...
