quality of life

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…

Life hasn’t always been easy for me, or for any of us, for that matter. I’ve seen and experienced things that no one should have to face. As the saying goes, what doesn’t kill you makes you stronger, right? A big part of my perspective comes from my youngest…

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…