Note: This column describes the author’s own experiences with intravenous immunoglobulin. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Let’s be real: Living with myasthenia gravis (MG) can be a roller coaster. One day, you’re hunky-dory-peachy-keen, and the…
The Whispered Roar – a Column by Shawna Barnes
Listen up, my fellow seronegative warriors. This is your wake-up call. I know the fight you’re in with myasthenia gravis (MG) because I’m in it, too. You’ve been poked, prodded, and told, “But your tests are normal.” You’ve seen the raised eyebrows, felt the silent doubts, and…
Living with myasthenia gravis (MG) can feel like riding an unpredictable roller coaster. Some days, we coast along smoothly, while on others, it’s like the track was built by a mischievous toddler with a love for loops. With fluctuating muscle strength and fatigue, learning to love and care for…
Mornings and I have an understanding: If I allow myself the time I need to ease into the day, things go relatively smoothly. If I don’t? Let’s just say it’s a recipe for disaster. I know myself well enough to acknowledge that because of my myasthenia gravis (MG), I…
This week, I turn 41. Some days, I’ll catch my reflection in the mirror and feel a deep sense of pride in the person looking back at me. I’ll see the strength I’ve built, the lessons I’ve learned, and the resilience that has carried me through these 41 years. Then…
Pride. This short noun has many definitions, depending on its use. I’ve found two primary meanings repeatedly in various memes and articles online: a feeling of deep pleasure or satisfaction derived from one’s own achievements, the achievements of those with whom one is closely associated, or from qualities or possessions that…
Living with a chronic illness like myasthenia gravis (MG) is no walk in the park. Sometimes I roll. Some days, just getting out of bed feels like a herculean task worthy of a medal. Yet among the challenges that come with living with MG, I’ve discovered some unexpected…
I can’t even begin to count the number of times I’ve seen some version of the following statement in online forums: “I hurt, but my doctors all tell me that pain isn’t a symptom of myasthenia gravis (MG). Does anyone else have pain?” I see it in support groups,…
Blue used to be my favorite color. After I was diagnosed with myasthenia gravis (MG), I found myself being drawn more and more to the darker shades of teal. A beautiful blend of blue and green, teal holds a special place in the hearts of many,…
There’s no denying it: Living with myasthenia gravis (MG) can make a person feel insane. One minute I’m celebrating a new physical milestone achieved, and the next I’m lamenting and grieving how much I lost when I got sick. It’s these constant emotional ups and downs that make…
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