Yay for June! Do you know why I’m so excited about the sixth month of the calendar year? It never meant much growing up except for the end of another school year. It’s not the month when my son and husband were born. Nope, not our anniversary month, either. I…
The Whispered Roar – a Column by Shawna Barnes
“Will my insurance cover it?” That’s a question I thankfully don’t have to ask when discussing various treatments with my care team at Veterans Affairs (VA). Its healthcare clinics have definitely gotten some bad press due to their care of our veterans, and I’ve been on the receiving end of…
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 the things, often to my own detriment. I’ll find the line of what I can do…
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…
Recent Posts
- My cousins’ love and loyalty remind me to choose connection, not division
- CAR T-cell therapy offers year-long relief for gMG patients in trial
- Corticosteroid use in MG raises risk of developing other conditions
- Guest Voice: I am stronger than my weakness from MG
- I’m learning to live with my MG body in a new way and love it anyway