Columns

“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…

With a prevalence of 14-40 cases per 100,000 people in the U.S., myasthenia gravis (MG) is considered a rare disease. Plus, early-onset MG can mimic other diseases like multiple sclerosis, amyotrophic lateral sclerosis, and others. If a patient is one of the “lucky” ones who has autoantibodies indicative of…

“Let’s talk about sex, baby/ Let’s talk about you and me/ Let’s talk about all the good things/ And the bad things that may be.” Am I aging myself by referencing a Salt-N-Pepa song? Maybe. But I think the topic of sex is important to discuss. Yet it often…

Last month, I began experiencing symptoms of COVID-19. My husband had tested positive two days before that, but we thought I might get lucky because I was fully vaccinated and boosted. Alas, it was not to be, as I tested positive shortly afterward. I am a disabled veteran,…

For most of my life, I’ve had a complicated relationship with my weight. I played sports in my early years, but because of my deep and abiding love for sugar and white bread, I was always a chubby kid. And while I wish I could get back to the svelteness…