For the past three weeks, my struggles with fatigue have greatly affected my life. I think others who, like me, have been diagnosed with myasthenia gravis (MG), as well as those who care for them, understand this experience. One minute life is rolling along and everything seems…
Soon after I was diagnosed with myasthenia gravis (MG), my neurologist told me that keeping track of my symptoms could be an important factor in successfully treating it. She recommended I keep a daily journal. She told me that MG is a snowflake disease: Just as…
I was caught off guard recently when a friend asked me what one word describes my ability to cope with the ups and downs I’ve had since my 2020 myasthenia gravis (MG) diagnosis. I asked if I could give my answer after dessert. As we ate, we reminisced about a…
Every year, I reflect on my diagnosis of myasthenia gravis (MG) on June 24, 2020. As I look back on the past year, I see that MG forced me to reconsider my understanding of certainty. I like predictability. Schedules and timetables are comforting, providing an order that appeals to…
June 25 marks four years since I was diagnosed with myasthenia gravis (MG). Looking back brings to mind the ancient Greek dramatist Aeschylus, who observed that “he who learns must suffer. And even in our sleep pain, which cannot forget, falls drop by drop upon the…
Note: This column describes the author’s own experiences with Ultomiris (ravulizumab-cwvz). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. “I dabbled in words and found they were my life,” Irish poet Patrick Kavanagh once wrote. I get…
Four years ago, I met up with a cousin who had recently moved to Texas. I hadn’t seen Margi since a Fourth of July celebration three years earlier. I’ve gotten to know her better over the years and have developed a love and respect for her that continues to bless…
Note: This column includes thoughts about suicide. Resources for help are listed at the end of the column. This week I did a self-inventory, as I’d become concerned about a few things. I noticed there are times when I sit in a chair, stare out the window, and do nothing.
“Watch, therefore, for ye know neither the day nor the hour wherein the son of man cometh.” — Matthew 25:13 These words have been at the forefront of my thoughts in the past few weeks, following the sudden deaths of two family members. The quote reminds us that everyone has…
One of my catchphrases, stolen from my father, is “there are worse things than being alone.” I’ve always known these were borrowed words, but yesterday’s Rare Disease Day provided the impetus I needed to discover their origins. As I reflected on what the awareness day meant to me, I…
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