Myasthenia Gravis News Columns

May 16, 2022May 16, 2022

Sometimes I Push Past My Line in the Sand, and It’s a Good Thing

COVID-19 Columns, Myasthenia Gravis News Columns

I want to do everything! Especially after a period of time when I’ve not felt well enough to do anything. So when the stars seem to align and I’m feeling ... Read more

May 9, 2022May 9, 2022

IVIG and Me: How Having a Port Has Improved My Treatments

Myasthenia Gravis News Columns

One common treatment for myasthenia gravis (MG) is intravenous immunoglobulin (IVIG). I was initially treated with IVIG for my symptom flares and exacerbations. Thanks to detailed notes kept by my ... Read more

May 2, 2022May 2, 2022

Hobbies Keep Me Sane When Managing Chronic Illness

Myasthenia Gravis News Columns

Hobbies can be a funny thing. It feels like some of us have many and could go broke supplying them, while others have no idea how to relax or do ... Read more

April 25, 2022April 25, 2022

My Dinner Plate Theory Helps Explain Daily Energy Levels

COVID-19 Columns, Myasthenia Gravis News Columns

“Stick a fork in me, I’m done!” “I don’t have enough spoons for this.” We’ve all heard various quips involving silverware. When one becomes part of the chronic illness family, ... Read more

April 20, 2022April 20, 2022

What to Look For in a Neurologist

Myasthenia Gravis News Columns

When I was 6 years old, I had a pair of brown leather fisherman sandals I was obsessed with. I wore them with every outfit, regardless of the event or ... Read more

April 18, 2022April 18, 2022

Building a New Care Team Is Tricky, but It’s Going Smoothly

Myasthenia Gravis News Columns

Yee-haw, what a wild adventure that was! If you’ve read the last few columns I’ve written, you’ll know that starting in February, my husband and I were preparing for a ... Read more

April 11, 2022April 11, 2022

A New Home Base Despite an Old Set of Woes

Myasthenia Gravis News 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 ... Read more

March 28, 2022March 28, 2022

Here’s to Breathing Easier, Eventually

COVID-19 Columns, Myasthenia Gravis News Columns

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 ... Read more

March 23, 2022March 23, 2022

Why Is MG Such a Large Part of My Identity?

Myasthenia Gravis News Columns

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 ... Read more

March 21, 2022March 21, 2022

Trouble Eating and Speaking: Center Stage of My Bulbar Issues

Myasthenia Gravis News Columns

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. ... Read more

March 14, 2022March 14, 2022

Lobster to Cheese: Minimizing Stress While Moving Across the Country

COVID-19 Columns, Myasthenia Gravis News 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 ... Read more

March 9, 2022March 9, 2022

Moving Forward Starts With Speaking Out

Myasthenia Gravis News Columns

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 ... Read more

March 7, 2022March 7, 2022

Tools of the Trade: How I Live My Best Life With MG

Myasthenia Gravis News Columns

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? ... Read more

February 28, 2022February 28, 2022

How Can Hospitals Better Serve Rare Disease Communities?

COVID-19 Columns, Myasthenia Gravis News Columns

“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 ... Read more

February 24, 2022February 24, 2022

After the Diagnosis, Is My Life Over?

Myasthenia Gravis News Columns

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 ... Read more