The Whispered Roar
— Shawna Barnes

I can’t even begin to count the number of times I’ve seen some version of the following statement in online forums: “I hurt, but my doctors all tell me that pain isn’t a symptom of myasthenia gravis (MG). Does anyone else have pain?” I see it in support groups,…

Blue used to be my favorite color. After I was diagnosed with myasthenia gravis (MG), I found myself being drawn more and more to the darker shades of teal. A beautiful blend of blue and green, teal holds a special place in the hearts of many,…

There’s no denying it: Living with myasthenia gravis (MG) can make a person feel insane. One minute I’m celebrating a new physical milestone achieved, and the next I’m lamenting and grieving how much I lost when I got sick. It’s these constant emotional ups and downs that make…

Six months can feel like forever. Using an elimination diet to detect food sensitivities can seem to last forever. Many such diets are restrictive at the start, which makes them difficult to stick with for long periods of time. But that’s sort of the point. In May, I started…

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 first you don’t realize how far you are from the surface; you’re too enamored by the…

Do you prefer a window seat or an aisle seat when you travel? Before I got sick during my deployment to Iraq (2009-2010), I used to love to travel. I never had to give much thought to flying. I always went with the cheapest ticket or the best deal.

It happened again. I received this comment, intended as a compliment, I think: “I don’t know how you do it.” It was made by a friend of mine who stopped by my business, The Nook, where I said I’d joined the board for a biathlon. I threw my name…

Note: This column describes the author’s own experiences with prednisone. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Do you like roller coasters? I used to — until my life became an emotional roller coaster fueled by health challenges…

Have you ever experienced a period of your life when the universe seemed to be sending signals that were subtle at first, but then — bam! — they were in your face and hard to ignore? That’s been my reality for several months now. Last week, I wrote about indulging…

For the first time in a while, I decided to do something that was low maintenance but would help me feel like the “old Shawna.” My thought process was good: I’d practice self-care by taking the afternoon to myself, first going out to lunch and then getting a set…

My husband, Justin, works in fitness. Six months ago he opened a small-group personal training gym in our little Wisconsin town, and he’s been working to grow his membership, which now includes me. Something Justin talks about often with clients — while he’s discussing training, nutrition, or other lifestyle…

Snow in September? Last week I got a new tattoo. The session was my husband’s gift for our anniversary this year. I told the tattoo artist that I wanted something to mark my myasthenia gravis (MG): a snowflake with the color teal, incorporated into some sort…