Daily living

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…

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…

Ah, summer, the season of sunshine, sandy toes, and an overwhelming urge to leave our responsibilities — and occasionally common sense — behind. For most families, mine included, summer is a time to finally take a much-needed break. But as someone living with neuromyelitis optica spectrum disorder (NMOSD), vacation…

Having neuromyelitis optica spectrum disorder (NMOSD) means Mother’s Day hits me a little differently. It’s not just a holiday; it’s a milestone, a victory lap, and sometimes a quiet exhale of relief that I’ve made it to another year of being “Mom.” This year feels especially meaningful, because my…

What does it take to be a rare disease patient? An immense amount of time and patience. Buckets of both, preferably refillable. Even when you think things have settled and you’re managing your health well, something pops up. After many years with neuromyelitis optica spectrum disorder (NMOSD), I’ve come…

I’ve always loved bright lipstick colors. The bolder, the better, in my opinion. There’s something delightfully defiant that makes me smile about catching my reflection in a window and seeing a pop of fuchsia or fire‑engine red. It’s hard not to feel at least a little cheerful when your lips…

I’m a self-sabotaging, push-the-limits kind of gal. The worst kind of patient. The sort of patient doctors warn their interns about. Yes, I know I should be following their recommendations, nodding politely when I’m told what to do, but my neurologist and I both know that I probably won’t listen.

There are some days (or weeks) when it feels like the world is coming at you hard and there’s nothing you can do about it. Life can be messy. I had a day like that just last week. So how do you power through when everything is a priority, but…

I’ve been a list builder for as long as I can remember. Even as a kid, I found comfort in writing things down, mapping out what needed to be done, and crossing items off one by one. Lists gave me structure. They still do. I like to stay busy, not…

Ever get that quiet, nagging sense that something in your body just isn’t right? For me, it started with extra trips to the bathroom — nothing dramatic, just enough to make me pause. Before long, I realized I was dealing with yet another bladder infection. Living with a rare autoimmune…