quality of life

“The world breaks every one and afterward many are strong at the broken places.” — Ernest Hemingway, “A Farewell to Arms” One of my favorite things to do is prepare a meal while a good friend is seated at my kitchen bar, a wine glass or cup of tea in…

One of my greatest pet peeves since my diagnosis with neuromyelitis optica spectrum disorder (NMOSD) is when people tell me it’s OK to be sick. I don’t need their permission to be who I am. What they’re really saying, though, is that they expect me to be a…

When you’re newly diagnosed with a rare disease, you have no idea what you’ll need to endure for the rest of your life. The shock of the diagnosis takes up all your energy, and you’re forced to live in the moment. There isn’t time to think about your future.

I never wanted to be a disability advocate. I don’t know anyone whose childhood dream involved advocacy of any sort, but something happens, or you witness an injustice you can’t turn away from, and a champion is born. I was born an advocate, except I didn’t know it until that…

Neuromyelitis optica spectrum disorder (NMOSD), my rare autoimmune disorder, forever throws new symptoms at me when I least expect them. To combat these surprises, I’ve had to create several unconventional coping mechanisms, many of them funny, awkward, or downright silly, especially to others who might witness them. Following…

“Mama, can we ride one more roller coaster, please?” I looked at Sophie’s desperate face and could see her excitement waiting to boil over. At 10 years old, my daughter is a tiny daredevil. The bigger and faster the ride, the louder she laughs. I knew she wanted to…

A 15th birthday is a special event for a teenager. Whether you have a big celebration with lots of friends and family, or a small gathering with loved ones and furry friends, having the opportunity to celebrate another trip around the sun is memorable and fun. In my Mexican culture,…

I’ve always loved driving, especially highway driving late at night. Watching every dash on the road zoom by with the hum of the car is both an exercise in concentration and a form of meditation. I was once an occasional smoker (it was short-lived), and I’m embarrassed to admit…

Plasma exchange, a blood-cleaning procedure, is safe and helps to ease symptoms in elderly people with neuromyelitis optica spectrum disorder (NMOSD), despite the presence of other health conditions. That finding is from a Chinese study that assessed the safety and efficacy of plasma exchange in elderly NMOSD patients (older…

Dear Reader, It’s me, Jennifer, hoping you don’t mind if I occupy the tiniest space in your mind for the shortest amount of your time. This request is because I feel insignificant right now. When people point out that I’m sick, when they comment on visible symptoms of my…