quality of life

Some days I feel like I’m made of symptoms. Living with neuromyelitis optica spectrum disorder (NMOSD) means navigating a body that’s constantly shifting beneath me, unpredictable in ways that defy preparation. Speaking of symptoms: One moment, my spine burns with relentless pain. The next day I’m ravenous, only…

People diagnosed with neuromyelitis optica spectrum disorder (NMOSD) who lose their jobs or cut back on their hours likely contend with vision loss, worsening pain, the use of walking aids, and frequent fatigue or depressed mood, an international study reports. “Developing a robust set of disability guidelines to protect…

It’s been some time since my last neuromyelitis optica spectrum disorder (NMOSD) attack, and lately, I’ve started to realize just how traumatic the previous year was for me. I recognize that I’m holding in this trauma and still fear another attack, and it’s adversely affecting my life. With more…

Before I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), I never gave much thought to routine. I’d sleep when I felt tired, exercise when I had the motivation, and take life as it came. But after NMOSD entered my world, I quickly learned that unpredictability was no longer…

In the morning, I like to wake up a few minutes before my family does. As I sip my tea and watch the sunlight spill through the windows, I usually use that quiet time to mentally prepare for the day ahead. But lately, things have shifted. I’m 43, and this…

A lot can change if you give it time. Seven months ago, I stood on a beach in Mexico, looking out onto the vast ocean. I remember wanting to feel hopeful after enduring flare-up after flare-up of neuromyelitis optica spectrum disorder (NMOSD), and yet also wondering if it’d just…

When my neuromyelitis optica spectrum disorder (NMOSD) was stable, I dreaded having annual medical checkups. They felt like an unnecessary hassle that required me to take time off work, fight downtown traffic, hunt for parking, and wait for an hour to see my specialist, only to learn that nothing…

Last week, I was fired from my job. I’m still disappointed and angry but mostly confused. I can’t talk about the specifics, but I can share that major life stressors — particularly situations that can’t be undone, such as losing a job, enduring a divorce, or grieving the death of…

Volcán de Fuego, a volcano in Guatemala, has been struck by lightning while it erupts. Just think about that for a second — a volcano already spewing lava and ash getting electrified by the sky. It’s one of Mother Nature’s most breathtaking and fearsome displays of power. Some brave souls…

In the last year, I’ve gone from battle to battle, surviving one attack after another of neuromyelitis optica spectrum disorder (NMOSD). I didn’t have time to figure out how all of this made me feel. Instead, I focused on work, the closest thing I have to normal, and put…