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.
I’m not ignoring you. I’m just ignoring the chance to talk to you on the phone. Cue phone ringing beside me. I look at caller ID and identify that it’s not an emergency. *send to voicemail* Then I wait…
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Last week, I was asked to respond to “Tell me about yourself” as it related to my disabilities and the help I needed around the house. The request came during an intake meeting to have an outside caregiving company…
I live in a little community in northwestern Wisconsin that boasts fewer than 1,000 year-round residents. This fluctuates greatly during the winter and summer tourist seasons. I had concerns about living in such a rural area when…
You take a deep breath but it gets stuck. So you take several smaller breaths to get it unstuck. It almost seems like you’re hyperventilating, but that would require air to actually go into your lungs. As your body…
Would you, could you, on the floor? I could not, would not, on the floor. I will not do it before four. I will not do it in the chair. I simply cannot on a dare … No, I’m…
Fear. Whether it stems from uncertainty over myasthenia gravis (MG), a lack of support from friends and family, the risk of losing an occupation or vocation, or possible disease flare-ups, living with fear seems to be common in…
How well do you really know your partner? Do you know their food or medication allergies? How about their favorite color? Can you rattle off the things that drive them nuts, both in a good and bad way?…
“How do you do it?” I’m asked this question a lot by friends, family, and even new acquaintances. I have myasthenia gravis (MG), so the topic usually comes up in conversation. After small talk, I’ll often end up…
H.I.T. Honesty. Integrity. Transparency. These are three values that I use as principles in my personal and professional lives. They were presented to me as H.I.T. by a friend, a fellow veteran and business owner. I use them when…
I cried. All day. Usually, no matter the level of sadness or grief, I can shut off my emotions because it’s necessary. Crying is one of the triggers that exacerbates my myasthenia gravis (MG) symptoms. I get…
“Breathe in. Hold the ball. Breathe out. Stroke the horse’s mane. Breathe in. Repulse the monkey.” OK, so maybe it wasn’t exactly like that, but last week, I tried tai chi for the first time in more than 20…
“Maybe if you just exercised, you’d feel better.” “You look tired today.” “I don’t know how you do it.” Mental health, particularly how we feel about ourselves, is a touchy subject, especially when you’re battling a chronic and…
Feeling so, so tired — the kind of fatigue that makes me wonder if I’m going to fall asleep standing up. Adjusting medication routines because the old timing no longer works. Questioning my sanity as my libido skyrockets. These…
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