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Here in the United States, the richest nation in the world in terms of nominal gross domestic product, medical expenses are the No. 1 cause of bankruptcy. People in the rare disease community are well aware of this and among the hardest hit. Seven years ago, I went…

Around age 5, I began having difficulty walking. A couple of times a day I would get a strange, pins-and-needles sensation in my right leg. I was young and didn’t think much of it. When my parents became aware, they were concerned. Multiple doctors told us not to worry. My…

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…

In the book “Man’s Search for Meaning,” Viktor Frankl writes, “If there is meaning in life at all, then there must be a meaning in suffering. Suffering is an ineradicable part of life, even as fate and death. Without suffering and death human life cannot be complete.” A…

“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…

On March 4, 1933, U.S. President Franklin Delano Roosevelt told a fearful nation that “the only thing we have to fear is fear itself — nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance.” Roosevelt’s words didn’t immediately end the financial chaos in the U.S. at…

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…

“I’d trade all of my tomorrows for one single yesterday.” The soulfulness of Janis Joplin’s voice and poignancy of Kris Kristofferson’s lyrics in “Me and Bobby McGee” have always resonated with me. The despair and longing are raw. Is there any return from that wasteland? Against my…

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…