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…
I admit it. I’m a nerd. I like the science gobbledygook. I thoroughly enjoy digging into the PubMed catalog of biomedical articles, part of the National Center for Biotechnology Information. But even I can admit that when I tried to explain the science behind how myasthenia gravis…
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…
“Disabled.” It’s a word with many meanings that trigger a gamut of feelings. Myasthenia gravis (MG) is considered a rare and disabling disease. It qualifies those of us who have it to collect disability benefits. (The ease of collecting these benefits is an entirely different topic that I’ll not…
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.
Makeup is one of those things that we women use to “put our face on,” so to speak. But when we start having trouble holding our arms up due to myasthenia gravis (MG), applying makeup is one of the first things to go. MG takes many things away from…
“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…
For the first time in a long time, I was frustrated with care that I had received. I recently had to go to a hospital emergency room, where, unfortunately, I didn’t feel that I was being heard as I tried explaining that something other than myasthenia gravis (MG) was…
If you were given the gift of nine extra hours a week, what would you do? This was the situation my husband and caregiver, Justin, and I found ourselves in last week. In February, we met with the owner of an organization that we were referred to by the…
Stepping out of the phone booth, I put my glasses on and look around to make sure I’m not spotted. I look to the left and then to the right one more time before hobbling into the darkness and blending in with that which is unseen. What does that remind…
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