The Whispered Roar
— Shawna Barnes

Yee-haw, what a wild adventure that was! If you’ve read the last few columns I’ve written, you’ll know that starting in February, my husband and I were preparing for a cross-country move from…

We made it! Seven states, 35 hours, and five weather types later, we arrived at our destination. Moving cross-country is not for the faint of heart, but with a little planning and a…

LOL. Some days all you can do is laugh out loud. In January I got very sick with COVID-19. As I mentioned in a February column, it took a lot out of me,…

Bulba what? Bulbar muscle group symptoms include losing the ability to speak — every man’s dream come true for his spouse, if ya believe all the comics, memes, and jokes. And it is…

“Nope. That needs to go in the other box, darling. Don’t forget to label it the way I showed you, please.” “I added dinner with your friends and a dump run to the calendar.

It’s 4:30 a.m. on Thursday, and I have been awake since 3 a.m. My deadline for turning in this column is less than four hours away. Why does this matter? I’ve been wanting to…

“It’s just anxiety.” “It’s just stress or PTSD.” “You just need more rest.” For many of us in the rare disease community, these comments aren’t uncommon. As someone with seronegative myasthenia gravis…

With a prevalence of 14-40 cases per 100,000 people in the U.S., myasthenia gravis (MG) is considered a rare disease. Plus, early-onset MG can mimic other diseases like multiple sclerosis, amyotrophic lateral sclerosis,…

“Let’s talk about sex, baby/ Let’s talk about you and me/ Let’s talk about all the good things/ And the bad things that may be.” Am I aging myself by referencing a Salt-N-Pepa…

Last month, I began experiencing symptoms of COVID-19. My husband had tested positive two days before that, but we thought I might get lucky because I was fully vaccinated and boosted. Alas, it…

I wrote last week about how the inaction and silence of others can be deafening. The opposite is also true. When help is offered and the offer is followed up on, it can…

One of the hardest things about living with a chronic illness like myasthenia gravis (MG) is the dialogue that doesn’t happen with people we know. The eye rolls we perceive when we try to…