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.
For the first time in a while, I decided to do something that was low maintenance but would help me feel like the “old Shawna.” My thought process was good: I’d practice self-care by taking the afternoon to…
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It’s crazy to think that I’m approaching my 30th month of writing my column, “The Whispered Roar,” for Myasthenia Gravis News, as well as my seventh year of raising awareness for myasthenia gravis (MG). Over the…
Because of myasthenia gravis (MG), not only do I have to keep track of the food I eat, the amount I talk, and the schedule for my treatment plan, but I also must pay attention to everything…
As you watch the scene unfold, you see someone standing before a person who’s seated. The person who’s standing swings a pocket watch in front of the other, whose eyes are closed, and chants, “You are getting sleepy. Veeeeeeeery…
When explaining myasthenia gravis (MG) to someone, I often describe it as a “fickle [expletive].” With MG, there seems to be no rhyme or reason for anything. At the start of my diagnostic journey, I asked my…
If you’ve been recently diagnosed with myasthenia gravis (MG) and you’re looking for a website to help you understand what that means, including how to explain to family members what your life is actually like, you’re in the…
I admit it. I’m a nerd. I like the science gobbledygook. I thoroughly enjoy digging into the PubMed catalog of biomedical articles, part of the National Center for Biotechnology Information. But even I can admit that when…
“Disabled.” It’s a word with many meanings that trigger a gamut of feelings. Myasthenia gravis (MG) is considered a rare and disabling disease. It qualifies those of us who have it to collect disability benefits. (The ease of…
Makeup is one of those things that we women use to “put our face on,” so to speak. But when we start having trouble holding our arms up due to myasthenia gravis (MG), applying makeup is one of…
For the first time in a long time, I was frustrated with care that I had received. I recently had to go to a hospital emergency room, where, unfortunately, I didn’t feel that I was being heard as I…
If you were given the gift of nine extra hours a week, what would you do? This was the situation my husband and caregiver, Justin, and I found ourselves in last week. In February, we met with the…
Stepping out of the phone booth, I put my glasses on and look around to make sure I’m not spotted. I look to the left and then to the right one more time before hobbling into the darkness and…
Are you seeing double? I was. And I still do if I push myself to a certain level of weariness. When I first experienced double vision, I thought that either my crappy vision was worsening (I’ve worn bifocals since…
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