Living with neuromyelitis optica spectrum disorder (NMOSD) means I’ve become something of a detective. I’m not the glamorous kind with a trench coat and a magnifying glass like Sherlock Holmes, but more like a tired, slightly bewildered Inspector Gadget who wakes up every morning trying to figure out what’s…
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As someone living with neuromyelitis optica spectrum disorder (NMOSD), I have learned that life is a delicate balance between caution and courage. There are times when rest is essential and times when I need to push myself beyond my comfort zone. Protecting my health doesn’t mean putting my life…
After a long and exhausting day at work, I drove in silence, first picking up my daughter from camp and then my husband from his office. I knew the inevitable question was coming: “What should we do for dinner?” When it did, I felt overwhelmed. It wasn’t that I didn’t…
I’m always reminding my friends to take whatever wins they can get, because life is hard. This is especially true when it includes neuromyelitis optica spectrum disorder (NMOSD). Before my life with a chronic illness, I took a lot of things for granted. I moved through the world without…
If you had asked me years ago what productivity meant, I would have rattled off the usual corporate nonsense: doing more, pushing harder, staying available, and proving I could outrun exhaustion like it was a competitive sport. I treated productivity like a personality trait, something I could earn through sheer…
When I was younger, I thought confidence was something people were born with. Some people just seemed to have it. They’d walk into a room without second-guessing themselves. They’d voice their opinions without rehearsing them in advance. They’d wear whatever they wanted and somehow never appear to care what anyone…
My best friends are my rock. They are my confidants, my vault, and the keepers of my dreams. They drop everything, no matter the hour, no matter the chaos, to be there for me. If loyalty were a sport, they’d be Olympic level. And while I live with neuromyelitis…
One of my earliest memories is of my mom balancing what seemed like an impossible load on a bicycle. Dad needed the car to work out of town, so Mom improvised. She’d hang grocery bags from the handlebars, tell me to climb into the baby seat, and then my younger…
A lot of people know who I am. They know my name and recognize my face. They might describe me as “busy,” “organized,” or “the one who always has a plan.” I’ve built a life that, from the outside, looks full of work, family, friends, and commitments. For a long…
Ever since neuromyelitis optica spectrum disorder (NMOSD) introduced pain into my life, I’ve been trying to exorcise it from my body. I’ve become a formidable opponent to pain, but parts of it still frighten me. The spasms were the worst. They once felt like someone was pouring boiling water…
Recent Posts
- Are those mystery aches and pains due to NMOSD or regular life?
- NMOSD therapy linked to fewer attacks, less disability in Chinese study
- Where I go to recharge from the daily challenges of NMOSD
- Clinical trial data show NMOSD treatment reduces relapses
- Living with NMOSD means learning how to combat decision fatigue