Columns

We made it! Seven states, 35 hours, and five weather types later, we arrived at our destination. Moving cross-country is not for the faint of heart, but with a little planning and a level head when problems crop up, it’s doable. Our home sale in Maine had some hiccups…

LOL. Some days all you can do is laugh out loud. In January I got very sick with COVID-19. As I mentioned in a February column, it took a lot out of me, but at the time I was slowly beginning to recover. It’s now the end of March,…

I wouldn’t describe myself as a nervous person. I’m plagued by anxiety, sure, but I’ve become pretty good at managing it. There is, however, a particular sentence that makes me break out into a sweat: “Tell me about yourself.” We’ve all heard this before, whether during a first date or…

Bulba what? Bulbar muscle group symptoms include losing the ability to speak — every man’s dream come true for his spouse, if ya believe all the comics, memes, and jokes. And it is something my husband and I joke about, mostly because it’s one of the more frustrating…

“Nope. That needs to go in the other box, darling. Don’t forget to label it the way I showed you, please.” “I added dinner with your friends and a dump run to the calendar. Am I missing anything?” Any idea what these conversation snippets are about? If you guessed moving,…

Normally, I don’t have a hard time talking about various subjects. I could spend hours discussing Academy Award nominees, arguing about why Slack is better than Microsoft Teams, or gossiping about the British monarchy. Speaking up isn’t the problem — it’s the subject matter that trips me up. When…

It’s 4:30 a.m. on Thursday, and I have been awake since 3 a.m. My deadline for turning in this column is less than four hours away. Why does this matter? I’ve been wanting to write about the tools that can help those of us with myasthenia gravis (MG) live our…

“It’s just anxiety.” “It’s just stress or PTSD.” “You just need more rest.” For many of us in the rare disease community, these comments aren’t uncommon. As someone with seronegative myasthenia gravis (MG), I hear them almost every time I go to the emergency room. I experience bulbar…

A week or so after spending three days in the hospital, I found out I had myasthenia gravis (MG). My symptoms were raging. They included severe double vision, slurred speech, and extreme fatigue, and eating, chewing, and swallowing were next to impossible. All of it was terrifying. Getting up to…

At some point in everyone’s life, we all feel misunderstood. One of my earliest memories is from when I was 6, and a group of kids made me feel like I didn’t fit in. I don’t remember exactly what they did, but I do remember how lost I felt. It’s…