A new round with an elimination diet to check my food sensitivities
What’s the first thing that comes to mind when someone tells you they’re “doing the carnivore diet”? If you’re like my husband, who works in the fitness world, it might just be an…
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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A cautionary tale about the medical uses of artificial intelligence
“Review scientific articles only and summarize the content to explain what treatments are available for a person with myasthenia gravis experiencing breathing difficulties due to diaphragm and intercostal weakness.” This was the…
Hard truths about my MG are pointing us to consider the future
The past 12 months have been eye-opening for me, bringing opportunities to accept hard truths about my mortality and independence while living with myasthenia gravis (MG). Both of my husband’s parents passed…
10 things I wish I knew after my diagnosis of myasthenia gravis
The first time I heard those dreaded words, “You have myasthenia gravis” (MG), I felt such relief. That was quickly followed by an intense desire to learn everything I could about the condition.
Why does myasthenia gravis awareness matter?
“Is there anything I need to know to help you in an emergency situation? What does an emergency look like for you?” A client of mine recently asked me those questions as we chatted…
3 ways to create awareness in this month that recognizes MG
It’s crazy to think that I’m approaching my 30th month of writing my column, “The Whispered Roar,” for Myasthenia Gravis News, as well as my seventh year of raising awareness for…
4 environmental considerations I keep in mind with MG
Because of myasthenia gravis (MG), not only do I have to keep track of the food I eat, the amount I talk, and the schedule for my treatment plan, but I also…
I was pleasantly surprised by my first hypnotherapy session
As you watch the scene unfold, you see someone standing before a person who’s seated. The person who’s standing swings a pocket watch in front of the other, whose eyes are closed, and chants,…
With myasthenia gravis, uncertainty is the only certainty
When explaining myasthenia gravis (MG) to someone, I often describe it as a “fickle [expletive].” With MG, there seems to be no rhyme or reason for anything. At the start of my…
To those recently diagnosed with MG, you’re in the right place
If you’ve been recently diagnosed with myasthenia gravis (MG) and you’re looking for a website to help you understand what that means, including how to explain to family members what your life is…
3 analogies to explain what it’s like living with myasthenia gravis
I admit it. I’m a nerd. I like the science gobbledygook. I thoroughly enjoy digging into the PubMed catalog of biomedical articles, part of the National Center for Biotechnology Information. But even…
Comparing ourselves to others doesn’t make the journey easier
“Disabled.” It’s a word with many meanings that trigger a gamut of feelings. Myasthenia gravis (MG) is considered a rare and disabling disease. It qualifies those of us who have it to collect…
