One of my greatest frustrations of living with a rare disease is how it affects my ability to exercise. Before neuromyelitis optica spectrum disorder (NMOSD), I enjoyed being an athlete and a dancer. When I graduated from high school, I weighed 94 pounds, and I maintained my small…
The Beginner's Guide to Walking - a Column by Jennifer V.
In the decade that I’ve lived with neuromyelitis optica spectrum disorder (NMOSD), I’ve connected with many other patients who say they’ve had trouble overcoming the heartache of not knowing who will show up for them in times of crisis. It’s easy to recall my similar pain when I’m speaking…
It’s been over two weeks since we were required to “spring forward” for the arrival of daylight saving time (DST). As a neuromyelitis optica spectrum disorder (NMOSD) patient, I’m not a fan. While the concept was introduced as a way to maximize daylight hours during the warmer months,…
I sometimes feel like I’m laughing in the face of death. When I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), all my internet searches informed me that I’d have about five years to live. Now, more than 14 years later, I’m still going strong with no signs of…
I’ve always been a tech nerd, falling in love with the newest tool in the Internet of Things, such as my Fitbit and phone, which can display various body statistics and control my transcutaneous electrical nerve stimulation (TENS) unit. Technology has become even more important…
Describing myself has always been a challenge. I’m as complex as the next person, but I feel like I’ve been a chameleon my entire life, always adapting to my surroundings to survive. That drive to survive is how I’ve become edgy, direct, and an advocate for various causes. This edge…
Sometimes while I’m waiting for my prescription, I find myself meandering through the aisles of our local pharmacy. At one point I found myself facing the wall of vitamin supplements. Rows upon rows of nondescript bottles greeted me, each distinguished only by a large letter on its front. The array…
I’ve been thin. Very thin. And I’m currently overweight. Very overweight. It’s not lost on me that in this lifetime, I’ve experienced both ends of the weight spectrum. I can make excuses for that, but the bottom line is that my body has endured sharp weight fluctuations for many reasons…
It had to be something special for me to break my silence on X (formerly known as Twitter). I had to share my support for actress Christina Applegate after she appeared at this year’s Emmy Awards in mid-January. Applegate has multiple sclerosis (MS), which has many similarities…
I consider my ability to swallow multiple pills at the same time both a skill and a necessity. Some days, I’ll look into the drawer of my nightstand and be overwhelmed by the number of pills prescribed to me. This realization can drag me into a moment of sadness, a…
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