3 tips for applying makeup without exacerbating MG symptoms
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…
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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When chronic health diagnoses cloud the treatment of acute issues
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…
New household help eases the burden on my spouse and caregiver
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…
Don’t tell anyone, but an MG diagnosis gives us superpowers
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…
My experience seeing double with myasthenia gravis
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…
Education is a part of living with a rare disease like myasthenia gravis
Q: What is myasthenia gravis (MG)? A: It’s a neuromuscular autoimmune disease. Q: What is a neuromuscular autoimmune disease? A: It’s when your immune system attacks the junction where nerve cells meet…
Navigating the VA healthcare system with presumptive conditions
“A service-connected condition means an illness or injury that was caused by — or got worse because of — your active military service.” Did you know that the U.S. Department of Veterans Affairs, also…
Learning to practice the most important kind of love: self-love
Love. It’s a four-letter word that can mean a hundred different things, depending on how and where it’s used. One of the things that sets my husband, Justin, and I apart from some…
When I stumble, my husband is there to catch me
It was 11:50 p.m. Wednesday night, and I was just getting ready to head up to bed after a long, frustrating day at the office. Meetings that ran late and frustrating tech issues…
I’m living with disability, but I’m still more than ‘the things I cannot do’
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…
I’m living with MG, and my best life, where everybody knows my name
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…
What causes air hunger for me as someone with myasthenia gravis?
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…
