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.
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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Shedding tears in frustration. Missing football games. Giving foot rubs and having heart-to-heart conversations. Being teased because I was in a wheelchair. Raising a boy to become a young man is hard enough without…
What do you do when you are awakened by your son telling you that a dead tree just fell on his stepdad’s head? For me, a switch flipped, and I went into medic mode,…
So you have myasthenia gravis (MG). Some of your friends or family have distanced themselves from you. You take handfuls of pills every day to kinda-sorta function. Life isn’t what it used…
For the first time since my medical retirement from the U.S. Army in 2011, my myasthenia gravis (MG) is stable enough that I felt comfortable traveling 12 hours to North Dakota to go…
The eye roll. The “I’m not listening but want you to think I am” head nod. The silence. The outbursts. Any or all of these have been responses I’ve received from people who…
“Umm … are you OK? Why does it look like you’re having a stroke? It sounds like you’re drunk. What’s going on? Why are you choking on our dinner?” When your date has…
My hygiene sucks. All of it. It’s better now, but that’s because I swallowed my pride and admitted to my husband (and caregiver), Justin, that I needed more help than I was asking…
Sixty-one days, 8.7 weeks, two months, or one-sixth of a year — that’s how much time I spent at medical appointments in 2022. When I stop to look at the numbers, it’s…
Neon green snot runs out of my nose and down the back of my throat. A cough sounds like I’ve been smoking two packs of nonfiltered cigarettes a day. Exhaustion hits a bit differently…
“Red light!” “Green light, … red light!” Are you smiling as you remember playing Red Light, Green Light in the schoolyard as a child? I have a smirk on my face as I sit…
I’m fat. My body mass index (BMI) is currently 37.9 kg/m2. (The National Heart, Lung, and Blood Institute notes that a BMI of 18.5–24.9 indicates a normal weight, while a BMI of 30…
Refresh. Renew. Reflect. Reset. It’s the time of year when folks tend to reflect on the months gone by and create resolutions for those to come. Those of us in the world of chronic…
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