Michelle Watson was only 27 when she found herself unable to get up out of a chair. She was working at a hospital at the time, and after getting bloodwork, her doctor called her and said “Drop what you’re doing and come to my office.” One of her labs was 100 times the normal range. Soon she was diagnosed with polymyositis.
A year later, she found The Myositis Association (TMA). “TMA is so wonderful – they have really changed my life. They gave me a scholarship to attend the TMA International Annual Patient Conference. I still have friends from that conference more than 20 years later.” She found “a room full of people just like me!” who shared concerns, advice about medications and doctors, and support for each other.
“In the old days,” Michelle said, “Black people stayed quiet about health problems, but this disease doesn’t have color. I was inspired by people of all backgrounds and abilities learning about their disease and encouraging one another.”
Michelle’s patient, wonderful husband found support from other care partners whose honesty and authenticity helped him navigate his own path. He and Michelle’s sister, who has dermatomyositis, provided her unconditional support.
Michelle became a support group leader, giving back to this community that has helped her for so long. “People helped me realize it’s up to me to make lemonade out of lemons. This is a long game – I learned to be patient. My TMA friends have been with me through everything.”
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May I ask what lab was 100 times normal? This seems like a difficult disease to diagnose and I would love a guideline to look for.
Lori, usually it’s the CK level that is so elevated. (Creatine Kinase)
Grateful Evening
I am new to this site and learning more about this dis-ease because my 83-year-old mother was just diagnosed with Polymyositis. As a result, she has lost about 50+ pounds over the last few months due to an inability to swallow. She has also been diagnosed with Amyloidosis of the heart and I now suspect it’s all been triggered by Covid-19.
She is currently on steroids, which seem to help, then not help, then help, and not help as much as we would like. We are waiting on the insurance to tell us that she is approved for the infusion her doctor has prescribed, which I am praying is now approved and she can begin.
Her CPK numbers had been 1400+ but after leaving the hospital they have dropped to the 640’s less than half of what they had been.
Today was a rough day for her and I would love to know what other people’s experiences have been along this journey.
Thank you
I feel so angry about my diagnosis. It has taken 15 years and 9 physicians to determine I have myositis. I only learned my diagnosis yesterday. I’m 66 and feel like those 15 years have been taken from me. I’m unable to tolerate any type of steroids, leaving me with immunosuppressant therapy or IVIG my only options. There’s no support group near me. My wife of 41 years has been my loving support through it all. I found this site today and will return to it like a friend. Thank you, Michelle, for your story.
Hello Jeremiah, We are so sorry you have had such a challenging journey. Please know that you are not alone. We have many virtual support groups you can connect with as well as webinars, videos, and information sessions accessible online. If you join our mailing list, you will receive regular information about activities and events. Join here: https://www.myositis.org/join-tma/
Find and register for our virtual meetings here: https://www.myositis.org/calendar/
Find our YouTube channel here: https://www.youtube.com/feed/playlists
Best wishes!