The Whispered Roar
— Shawna Barnes

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. What is a prednisone taper? Technically, it means to gradually lessen the dosage of the corticosteroid over time. But if…

I failed at being a business owner. Big time. I had to lay off employees and break contracts, and I felt like I had let a lot of people down because of myasthenia gravis (MG). I’m still paying debts a year and a half after closing the business…

“Would you stop sharing so much about mya … whatever the hell it is you have? All you’re doing is looking for attention.” Anyone else heard that before? Maybe from colleagues at work when you’re trying to explain why you’re requesting accommodations? Or family members who roll their eyes…

Can you play outside with your kids? Do you need an ice vest? Did you run an ultramarathon in the desert? Are you able to work full or part time? Are you living or barely surviving? The answers to these questions will be different for many of us with…

The COVID-19 lockdowns had just started, and small businesses around the world were shuttering at an alarming rate. Many weren’t only temporarily adjusting, they were closing for good. Being in quarantine meant no customers wandering around downtown to shop on a lazy Sunday afternoon. There were no lunchtime meetings,…

Last month, when my son, Caden Degen, turned 21, I celebrated it publicly by acknowledging my perspective on what it was like for him growing up, given my myasthenia gravis (MG). This month, he wanted to share his own thoughts, so we communicated via email and phone conversations…

I’ve lost 20 pounds in three months. Crazy, right? In previous columns, I discussed some of the “aha” moments I’d experienced while taking high doses of prednisone to manage my myasthenia gravis (MG) symptoms. I gained weight — a lot of it — and blamed the medication.

Guess what I did last week? I took a shower standing up! Who cares, right? Well, I do. Because it was a win, however small. When you have a rare disease like myasthenia gravis (MG), the ability to celebrate big wins becomes a rare event of its own. Those…

We all do it. There’s a reason we have the phrase “keeping up with the Joneses,” which everyone knows and understands. For some reason, we want the outside world to see our lives through a specific viewfinder, one that shows the highlights with filters. Because of this, as a society…

Shedding tears in frustration. Missing football games. Giving foot rubs and having heart-to-heart conversations. Being teased because I was in a wheelchair. Raising a boy to become a young man is hard enough without throwing myasthenia gravis into the mix. But I like to think we made the best…

What do you do when you are awakened by your son telling you that a dead tree just fell on his stepdad’s head? For me, a switch flipped, and I went into medic mode, something I hadn’t engaged in for years. Yet I returned to it in a split second…

So you have myasthenia gravis (MG). Some of your friends or family have distanced themselves from you. You take handfuls of pills every day to kinda-sorta function. Life isn’t what it used to be. Get over it. Yup, you heard me. Get over it. But hear me out.