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…
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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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…
Words matter, especially to loved ones living with a chronic illness
“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…
How I’m navigating symptoms of both early menopause and MG
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…
How I maintain independence in my personal hygiene, despite MG
People tend to take certain abilities for granted, refusing help even if the need arises. Call it pride, embarrassment, stubbornness, or denial, but the result is the same: Some tasks may not get done if…
Why it’s important not to downplay or ignore new symptoms
Do you ever just sit there, staring into space, wondering which diagnosis you can attribute your latest symptom to? Maybe you don’t even bring up new issues with your doctor, simply chalking them up…
What does ‘disabled’ look like with myasthenia gravis?
“That spot is saved for someone who really needs it, someone living with a disability.” You can unclench your fists and stop gritting your teeth now. If, like me, you’re a young(er) person with…
