The Whispered Roar – a Column by Shawna Barnes

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 at the Veterans Affairs (VA) clinic in Maine, where I received those infusions, and because of…

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 of enjoyment. I personally have fallen into both categories at different points in my life. When…

“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 term “spoonie,” based on the spoon theory, a metaphor coined by lupus patient Christine Miserandino. Essentially,…

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 Maine to Wisconsin. We officially landed in the Great Cheese State on April 2. The…

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 level head when problems crop up, it’s doable. Our home sale in Maine had some hiccups…

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, but at the time I was slowly beginning to recover. It’s now the end of March,…

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 something my husband and I joke about, mostly because it’s one of the more frustrating…

“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. Am I missing anything?” Any idea what these conversation snippets are about? If you guessed moving,…

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 write about the tools that can help those of us with myasthenia gravis (MG) live our…

“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 (MG), I hear them almost every time I go to the emergency room. I experience bulbar…