I always know when it’s been a busy week because my body tells me so. My muscles ache, I feel weak, and a burning sensation finds new areas of my body to light up. I can’t just power through my weekend like others might, enjoying fun activities after the mundane…
There’s a lot of things that people don’t see about me. I deal with fatigue, pain, and other unpredictable symptoms that come with having neuromyelitis optica spectrum disorder (NMOSD). Even the simplest tasks can require monumental effort to complete. That’s why “bed rotting,” as it’s called, has become an…
Last weekend, my older brother and I took a sibling getaway to Tampa, Florida, for his birthday, something we’d never done before. I was excited for the chance to connect with him, but with only three days, we had to be strategic about fitting in all of the activities. Due…
There are so many things I still want to do in life. I never stop. Perhaps it’s because I feel that I’m up against a clock. I constantly wonder how long it will be until my neuromyelitis optica (NMO) takes over and I am further limited in energy and…
In my circle of friends, we often joke that being a rare disease or chronic illness patient is a full-time job. For me, living with not just neuromyelitis optica (NMO), but also several other life-altering diseases that require constant treatment, takes a lot of energy. I must attend numerous appointments…
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