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If only I had a crystal ball that told me exactly how much time I have left, I’d know if I could spend my Sunday on the sofa or if I’d need to plan my dream trip to Indonesia and get on the next flight. When I was diagnosed…

I recently celebrated my mother’s birthday, which was lovely because it was a chance to see family members I hadn’t seen in a while. Our adult lives are busy, so regrettably, we don’t get enough time to sit around, eat a meal, and check in with one another. I’m grateful…

Living with neuromyelitis optica spectrum disorder (NMOSD) often means navigating a journey filled with both triumphs and challenges. While some days I feel that I’m managing the disease well, I quietly suffer on others. For loved ones and caregivers, understanding the subtle signs that indicate a rough day for…

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…

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,…

Biting into a raw lemon is always a shocking experience no matter how many times you’ve done it. The smell of a lemon may be fresh and inviting, but the taste? Not so much. Yet when you take a sip of fresh lemonade on a hot day, it’s pleasant and…

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…