How to cure myasthenia gravis with yoga, and other myths
“You should drink celery juice and cleanse your body. It will cure you!” “I’m a distributor for this supplement company, and I know it will make you feel better and cure your autoimmune…
The Whispered Roar
— Shawna Barnes
Shawna N.M. Barnes is a writer, accessible website designer, and disabled veteran living in Cable, Wisconsin, with her husband. She was diagnosed with seronegative generalized myasthenia gravis (MG) in 2018 after seven years of advocating for herself within the VA’s medical system. She hopes that through her transparency, bluntness, and no-nonsense way of writing about life with her disease that she can help others see that there is hope after an MG diagnosis. Sometimes, we just have to get out of our own way to live our best lives.
Featured Post
How quicksand, elephants, and sirens relate to living with MG
Close your eyes and imagine that you’re in a diving suit, swimming in a warm and comfortable lagoon. You find yourself drawn into the depths of the beautiful teal water by a siren. At…
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Taking stock of my challenges and responses over Memorial Day
Being a teen mom, Iraq, husband No. 3, myasthenia gravis, moving halfway across the country, getting a new team of specialists, and a 5k. What do these random things have in common? They’re…
Piss-poor planning makes for poor performance in life with MG
The good ole Army still has a few things to teach me nearly 12 years after my medical retirement. “Piss-poor planning makes for poor performance” was drilled into my head as a combat…
Eeny, meeny, miny, moe, it’s a-prednisone tapering we will go
Note: This column describes the author’s own experiences with prednisone. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. What is a prednisone…
Myasthenia gravis taught me how to ‘fail forward’
I failed at being a business owner. Big time. I had to lay off employees and break contracts, and I felt like I had let a lot of people down because of…
What’s the difference between attention seeking and education?
“Would you stop sharing so much about mya … whatever the hell it is you have? All you’re doing is looking for attention.” Anyone else heard that before? Maybe from colleagues at work when…
What does well-managed myasthenia gravis look like?
Can you play outside with your kids? Do you need an ice vest? Did you run an ultramarathon in the desert? Are you able to work full or part time? Are you living or…
What myasthenia gravis taught me about being a business owner
The COVID-19 lockdowns had just started, and small businesses around the world were shuttering at an alarming rate. Many weren’t only temporarily adjusting, they were closing for good. Being in quarantine meant no…
My son speaks out on living with his mom’s myasthenia gravis
Last month, when my son, Caden Degen, turned 21, I celebrated it publicly by acknowledging my perspective on what it was like for him growing up, given my myasthenia gravis (MG). This…
The impact of ‘flare fear’ on my MG symptom management
I’ve lost 20 pounds in three months. Crazy, right? In previous columns, I discussed some of the “aha” moments I’d experienced while taking high doses of prednisone to manage my myasthenia gravis…
Why it’s important to celebrate the small wins with myasthenia gravis
Guess what I did last week? I took a shower standing up! Who cares, right? Well, I do. Because it was a win, however small. When you have a rare disease like myasthenia…
Comparison is the thief of joy when you have myasthenia gravis
We all do it. There’s a reason we have the phrase “keeping up with the Joneses,” which everyone knows and understands. For some reason, we want the outside world to see our lives through…
