The Whispered Roar
— Shawna Barnes

Last week my husband and I celebrated an anniversary on July 20. It wasn’t the anniversary of when we first met (that’s Oct. 15). It wasn’t our wedding anniversary (that’s coming up on Aug. 10). So what was so momentous that we acknowledge it every year? On July 20, 2016,…

Nobody said this life would be easy. We all endure storms we barely make it out of alive. Throw an autoimmune disease like myasthenia gravis into the mix, and life can go from “not easy” to “WTF?” But then you adjust, and “WTF?” becomes your everyday life. During this…

Three years ago, after I had a thymectomy and before I started high doses of prednisone to treat my myasthenia gravis (MG), I weighed in at a comfortable 170 pounds. After I was prescribed 20 mg of prednisone a day, I managed my weight OK for a while.

It’s the last Monday of June. The last Monday of National Myasthenia Gravis Awareness Month. Last week, I shared some tips for both myasthenics and our friends and family on how you can continue to turn awareness into action long after this month is over. As the month…

“Hey, Shawna, I have a (friend/co-worker/family member) who was just diagnosed with myasthenia gravis. Can I connect the two of you?” One of the advantages — and sometimes disadvantages — of being as outspoken as I am about my battle with this crazy disease is that people turn to…

I traveled a long road to finally put a name to the crippling symptoms I began experiencing after my medical retirement from the Army in 2011. Once my diagnosis was confirmed in 2018, I began blasting my friends and family with facts about myasthenia gravis (MG) when…

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…

“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,…