The Whispered Roar
— Shawna Barnes

I want to do everything! Especially after a period of time when I’ve not felt well enough to do anything. So when the stars seem to align and I’m feeling good, I do all…

One common treatment for myasthenia gravis (MG) is intravenous immunoglobulin (IVIG). I was initially treated with IVIG for my symptom flares and exacerbations. Thanks to detailed notes kept by my infusion nurses…

Hobbies can be a funny thing. It feels like some of us have many and could go broke supplying them, while others have no idea how to relax or do something for the sake…

“Stick a fork in me, I’m done!” “I don’t have enough spoons for this.” We’ve all heard various quips involving silverware. When one becomes part of the chronic illness family, they may adopt the…

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,…