There are days when I feel like every day is Halloween because of the way I must live my life while navigating myasthenia gravis (MG). Is it a trick or a treat? Sometimes it’s hard to tell. Stability Now that I’ve been on a solid treatment plan that…
The Whispered Roar – a Column by Shawna Barnes
“I haven’t showered in a week. Can you come over and hang out so I can safely take one?” At 38 years old, these were not words I had anticipated having to string together for someone I’ve known for only six months. With my spouse as my…
“I wish I could stay home all day and take naps.” Does anyone else want to reach through your screen and give me a knuckle sandwich when you see that statement? Does it bring up an immediate negative reaction like anger? It used to for me, as well. Until I…
What do you do when life just gets to be too much? Too heavy? If you’re reading this, then I feel it’s safe to assume that you’re a fighter, so you likely do the same thing I do and just keep fighting, pushing forward. There is no throwing in of…
“My pet Fido makes me feel so much better. Where can I get him a service dog vest?” You can’t. Well, you can, but unless Fido is specifically trained to perform tasks related to your disability, you shouldn’t. And I’ll tell you why. I’ve had two trained service dogs since…
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…
Recent Posts
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- The dangers of misinformation in a world that craves certainty
- Being silent about my MG symptoms is like wearing a mask
- Urinary incontinence may affect about half of MG patients: Study
- New study explores when MG patients can taper immunosuppressive therapy