Columns

Putting My Fear of Needles to the Test

I used to pass out at the sight of blood. As a toddler, I saw the blood from my mother’s suicide attempt. The images from that night will forever be 10-second flashbacks in my brain. Fainting was my body’s way of protecting myself from more trauma. As I grew older,…

I’m Fortunate to Be the ‘Right Talent, Right Now’

Did you know that October is “National Disability Employment Awareness Month“? I hadn’t realized it until midmonth, though I’m legally disabled and employed as a writer. This year’s theme, “The Right Talent, Right Now,” jumped out at me as thoughts swirled in my head about having a month dedicated…

IVIG Is a Key to My Success with LEMS

We’ve all been there. Our doctors suggest a new treatment for our rare disease, and after consulting with other patients through social media, we decide that the option is too scary. I did this with intravenous immunoglobulin (IVIG) replacement therapy. For more than a year, I held my neurologist…

Children of ‘Rare Parents’ Give Me Hope

One of the first Lambert-Eaton myasthenic syndrome (LEMS) patients I had the pleasure of meeting in real life was Romy Braunstein. Romy is taller than me, which is no small feat because I am pushing 6 feet. Her personality is larger than life, and her sense of humor has…

Not All Superheroes Wear Capes

I wasn’t diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) until my sons were grown. Upon his return from serving in the Navy, one of my sons remarked how happy he was that I could make weekend plans with friends instead of “just recovering each weekend after working all week” like…

My Mental Health Safety Net

In my last column, I shared wording that I’ve used to explain Lambert-Eaton myasthenic syndrome (LEMS) to my family, friends, and medical providers. However, I feel that I would be doing the LEMS, rare disease, and chronic illness communities a disservice if I didn’t admit that, at times,…

Was My Fibromyalgia a Misdiagnosis?

I was in my mid-30s when my painful, yet vague Lambert-Eaton myasthenic syndrome (LEMS) symptoms began to interfere with my daily life. I was unable to walk any distance, had widespread bone pain, and experienced extreme fatigue. My career had transitioned from public health education to pharmaceutical sales…