The Whispered Roar
— Shawna Barnes

The caregiver. The parent. The big sister. The only child. The husband/wife/spouse. The honors student. The executive. The jock. The soldier. The patient. The flaky friend. The chronically ill. These are all titles and roles that society establishes for us, or we establish ourselves. We might be proud to…

Did you know that Sept. 21 is the International Day of Peace? The United Nations established it in 1981, and it’s celebrated every year on that day. When my world’s in chaos, as it’s been for the past several weeks (or months, really), do you know where I turn to…

Today I despise myasthenia gravis. I resent the eight years I had to fight for a diagnosis. I’m jealous of my able-bodied family members. But most of all, I loathe having myasthenia gravis. Some say there are seven stages of grief while other say there are five. Regardless…

It’s something I’ve always read about in my research on myasthenia gravis (MG). I’d always hoped it would never happen to me. I went so long trying to figure out MG that having to go down that road all over again is daunting. Quite frankly, I don’t want to…

When I first got out of the Army, I was unable to drive or take care of myself or my son, let alone work. I moved back in with my parents in July 2011 and met my now husband that October. I used as many Veterans Affairs programs as…

On Aug. 8, I had an appointment with a new neurologist. I was apprehensive about it because he would be the second neurologist I’d see at Veterans Affairs (VA) since our move to Wisconsin. I was quite happy with the neurologist I’d met when we got here, when I…

What do you do when after fighting for years you finally find a medical team that listens and a treatment plan that actually helps? Well, if you are anything like me, you take everything you know and safely push the boundaries as far as you can. Back in January,…

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…