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Do you ever feel like the punches keep coming? Living with neuromyelitis optica spectrum disorder (NMOSD) can sometimes feel a lot like that. I’m a boxer, stuck in a corner with no way to avoid those vicious and cruel punches landing square in the face. Life, especially one with…
I’m a prolific list-builder, and there should be a support group for people like me. From grocery lists to bucket lists, from daily to-dos to long-term goals, I have a list for nearly everything. Some might see my habit as overkill, but it’s a way of life for me. If…
After six hours of sitting in the ER waiting room, I wondered if, instead of coming here, my optometrist could’ve recognized my optic neuritis attack and prescribed me Solu-Medrol (methylprednisolone) and oral steroids. An emergency appointment with my optometrist certainly would’ve taken less time than waiting for a…
Note: This column describes the author’s own experiences with Solu-Medrol (methylprednisolone) and the Homepump Eclipse. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Initially, I took a blasé approach to my most recent neuromyelitis optica spectrum disorder…
“The Hare and the Tortoise” holds a special place in my heart among Aesop’s timeless fables. It’s a narrative I revisit often in my life, finding in its conflict and resolution a source of enduring hope. For patients like me who have neuromyelitis optica spectrum disorder (NMOSD), hope…
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…
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