“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…
Are you seeing double? I was. And I still do if I push myself to a certain level of weariness. When I first experienced double vision, I thought that either my crappy vision was worsening (I’ve worn bifocals since I was 18) or that my new symptom, a droopy…
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…
Q: What is myasthenia gravis (MG)? A: It’s a neuromuscular autoimmune disease. Q: What is a neuromuscular autoimmune disease? A: It’s when your immune system attacks the junction where nerve cells meet muscle cells. Does anyone else feel like they’re giving a lecture when explaining this thing we…
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