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You can’t find it if you don’t know what you’re looking for. That’s how I feel every time my Facebook and Instagram communities related to neuromyelitis optica spectrum disorder (NMOSD) discuss a news topic I hadn’t heard about. I’m left madly searching the internet to get caught up. Meta,…
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…
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…
“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…
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…
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