Building a New Care Team Is Tricky, but It’s Going Smoothly
Yee-haw, what a wild adventure that was! If you’ve read the last few columns I’ve written, you’ll know that…
Articles by Shawna Barnes
A New Home Base Despite an Old Set of Woes
We made it! Seven states, 35 hours, and five weather types later, we arrived at our destination. Moving cross-country…
Here’s to Breathing Easier, Eventually
LOL. Some days all you can do is laugh out loud. In January I got very sick with COVID-19. As…
Trouble Eating and Speaking: Center Stage of My Bulbar Issues
Bulba what? Bulbar muscle group symptoms include losing the ability to speak — every man’s dream come true for…
Lobster to Cheese: Minimizing Stress While Moving Across the Country
“Nope. That needs to go in the other box, darling. Don’t forget to label it the way I showed you,…
Tools of the Trade: How I Live My Best Life With MG
It’s 4:30 a.m. on Thursday, and I have been awake since 3 a.m. My deadline for turning in this column…
How Can Hospitals Better Serve Rare Disease Communities?
“It’s just anxiety.” “It’s just stress or PTSD.” “You just need more rest.” For many of us in the…
My Quest to Name the Beast That Is MG
With a prevalence of 14-40 cases per 100,000 people in the U.S., myasthenia gravis (MG) is considered a rare…
‘Let’s Talk About Sex, Baby’
“Let’s talk about sex, baby/ Let’s talk about you and me/ Let’s talk about all the good things/ And the…
The Trials and Tribulations of COVID-19 and Rare Disease
Last month, I began experiencing symptoms of COVID-19. My husband had tested positive two days before that, but we…