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…
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Living in a big city like Denver has always had its perks. My office downtown is but a 10-minute drive from home, our food scene is incredible, and the city is diverse and always growing. And one of the biggest blessings of living in Denver is having good access…
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…
Passing through the Great North here in Canada reminds me of how much I love being connected to nature. I never get enough of it when living in a metropolitan city. Modern medications are saving my life, but I can’t help but wonder if the answer to neuromyelitis optica…
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…
“It’s like heaven and hell at the same time.” That’s my response whenever I meet another neuromyelitis optica spectrum disorder (NMOSD) patient who asks me about our Canadian healthcare system. Don’t get me wrong: I’m an incredibly proud Canadian. There are wonderful aspects to our “Great North,” including our…
“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…
The past few years have been challenging for me, my family, and especially my youngest daughter, Bella, who in 2017 was diagnosed at 9 years old with neuromyelitis optica spectrum disorder (NMOSD). At the time, the best course of therapy recommended by Bella’s neurologist was Rituxan…
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.
Recent Posts
- The pain of NMOSD nerve sensitivity means more than just a cold shoulder
- Most adults with NMOSD use biologic therapies: Registry study
- Every time I turn to Dr. Google, I get an immune system mystery
- Conventional NMOSD treatment effective in double-negative cases
- Grieving how NMOSD has left me uncomfortable in my own skin
- Enspryng outperforms standard immunosuppressants in NMOSD study
- Slow and steady: I’m ditching big resolutions and easing into a new year
- Late-onset NMOSD responds better to newer, highly effective therapies
- New biomarker may help gauge disease severity in NMOSD
- The longest night of the year offers hope of brighter days with NMOSD