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.
Let’s be honest right out of the gate: Grief stinks. It’s messy, exhausting, and sneaky. And if you live with a chronic illness like myasthenia gravis (MG), grief isn’t just about losing people…
Read more
Living with myasthenia gravis (MG) means I’ve spent more time in hospitals and clinics than I ever imagined I would. Most of the healthcare providers I’ve met have been kind, compassionate, and respectful.
Note: This column describes the author’s own experiences with the dietary supplement huperzine A. Not everyone will have the same response to it. Consult your doctor before starting or stopping a therapy. Before I…
Dear myasthenia gravis (MG), This note isn’t easy for me to write, but I think it’s time we break up. I could be cliché and say it’s not you, it’s me. But let’s…
This column describes the author’s own experiences with pyridostigmine bromide. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. A little-known fact about yours truly:…
Two hundred measly yards. If you had asked 14-year-old me to swim 200 yards, I would’ve laughed, flipped down my goggles, and knocked it out before you finished the question. I was a distance…
After every major flare of myasthenia gravis (MG), there comes a stretch of time that feels like limbo. I call it the “gray zone” of healing. It’s that place between being actively…
Healing doesn’t always look like rest and stillness. Sometimes it looks like kicking your legs with wild abandon in a murky lake while your husband looks on amused, wondering how his 41-year-old wife suddenly…
I’ve been in survival mode for so long that I forgot what it felt like to just be. To breathe without panic. To cry without consequence. To feel without falling apart. But over the…
It all started during a regular intravenous immunoglobulin (IVIG) infusion, part of my routine dance with myasthenia gravis (MG). I was mid-infusion when my eyelids started doing the gravity tango and my ability…
I’ve seen these questions pop up in myasthenia gravis (MG) forums more times than I can count: “Why do we get weak? Why do we fall?” If you live with MG, you’ve…
I used to think stress always looked like a dramatic meltdown. You know, ugly crying, yelling into a pillow, eating a bag of cheese curls while binge-watching trashy TV. (Been there, no regrets.) But…
Get regular updates to your inbox.
