Columns

Sometimes I stand in the shower, and time just slips by. I numbly run my fingers through my thick hair, and I’m immediately brought back to reality by the chunk of hair in my hand. Hair loss can be a side effect of several medications, including prednisone,…

Note: This column describes the author’s own experiences with Uplizna (inebilizumab-cdon). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I had a rough summer. After enduring three major attacks from my neuromyelitis optica spectrum disorder (NMOSD),…

There are 168 hours in a week. That’s quite a bit of time to accomplish life. But what if many of those hours are robbed from you? Let’s examine my schedule, for instance. I’ve worked since I was 14 years old. My first job was at McDonald’s, where I loved…

Note: This column describes the author’s own perspectives on several potential treatments for pain. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I’ve said it before, and I’ll say it a thousand times more: Living with pain is the worst.

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…