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…
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
We need to address verbal, sexual harassment in healthcare settings
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.
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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?
Columnist Shawna Barnes discusses air hunger with MG, its causes, how it differs from other shortness of breath, and strategies for managing this symptom.
Getting my definition of adequate sleep is vital to manage my MG
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…
How I’m living with the fear that accompanies myasthenia gravis
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…
Marriage, communication, and intimacy in life with MG
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…
How I respond when people ask me, ‘How do you do it?’
“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…
Being a business owner while living with myasthenia gravis
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…
How grief is helping me measure my progress with myasthenia gravis
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…
Surprisingly, exercise with MG also requires a bit of mental resilience
“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…
