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As I write this, it’s the evening before I start receiving Uplizna (inebilizumab-cdon) infusions, a preventive treatment for my neuromyelitis optica spectrum disorder (NMOSD). I’ll admit, I’m feeling anxious. Here’s how Uplizna works: Astrocytes are a type of cell that helps nerves work properly. On the surface of…
As summer winds down, I’m eagerly awaiting the return of fall. I love fall fashion, and I can’t wait for a break from the intense sunlight. After more than a decade of remission, my rare disorder, neuromyelitis optica spectrum disorder (NMOSD), reared its ugly head this summer, causing absolute…
Note: This column describes the author’s own experiences with preventive NMOSD medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I’ve always been afraid of heights. When I’m looking over an edge, my palms get sweaty, my heart starts to race,…
It’s not you; it’s me. That’s a way to explain the inevitable mood swings that come with neuromyelitis optica spectrum disorder (NMOSD), but it’s not the whole story. There’s a lot to unpack with an invisible disability. We who have a rare disorder may have trouble articulating how it’s…
Recovery is a long, windy road and I am not here for it. I deserve a break after having two optic neuritis attacks in the last couple months. Each episode was treated with a five-day regimen of Solu-Medrol (methylprednisolone) infusions, and then my medical team inserted a port…
“What doesn’t kill you makes you stronger,” as they say. Along those lines, my first experience with plasmapheresis for neuromyelitis optica spectrum disorder (NMOSD) was both intense and helpful. In May, I suffered an optic neuritis attack in my left eye. After five days of intravenous…
I’ve always believed that everything happens for a reason, but for me, it’s rarely convenient when it does. Is there ever a good time to have a neuromyelitis optica spectrum disorder (NMOSD) attack? Even if I could schedule when my body decides to have a meltdown, my life wouldn’t…
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…
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