Daily living

Even though summer isn’t officially over yet, it already feels like the end. This year, I’m feeling a bit emotional about it, and I’m sure my neuromyelitis optica spectrum disorder (NMOSD) has something to do with that. Living with NMOSD has made me hyperaware of the effects of…

Note: This column describes the author’s own experiences with medical marijuana products. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Living in Colorado is a dream for many reasons, including the fact that there are over 300…

I’ve been trying to stay active, but after a long family bike ride, I was exhausted. I opened my fridge looking for a fast and easy snack and audibly cheered when I found the strawberries I’d washed, chopped, and neatly placed into Tupperware earlier that day. Had I not found…

There’s no way to fully prepare for a flare-up of neuromyelitis optica spectrum disorder (NMOSD) when I’m traveling, though I try. I’ve invested in additional travel insurance when out of the country, thankfully never having to use it. I bring records of all my medications should a treating…

Summer for most teens is a time to relax, stay up and wake up late, enjoy time with friends, and be free from the demands and stress of high school. For my 15-year-old daughter, Bella, though, summer has been a time to catch up on schoolwork so she’ll pass ninth…

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.

My obsession with clean teeth started long before my neuromyelitis optica spectrum disorder (NMOSD) diagnosis. As a child, I had more than my share of visits to the dentist — enough that as an adult, I’d do anything to avoid going. Unfortunately, I had braces as a child…

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…