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After experiencing all of the challenges that came with my 13-year-old daughter Bella’s neuromyelitis optica (NMO) diagnosis and the rareness of the disease, I wanted to find a way to connect with other NMO patients and caregivers. Bella was so young that I felt I needed the connections to…
As the COVID-19 pandemic rages on, many families are concerned about the holidays. I’m trying to approach the season with patience, but as someone with neuromyelitis optica (NMO), I’m also tired, frustrated, and scared. Living with this disease and taking immunosuppressants means I’m at a higher risk of becoming…
I noticed recently that my left eye was irritated. It felt sunburned, which seemed odd given that it’s late autumn on the west coast of Canada, which means it’s chilly and wet. It was bothering me enough that I looked in the bathroom mirror to see what the…
Tattoos have always been a form of expression. Throughout history, tattoos have been used to convey love and grief, depict religious symbols, and even serve as a form of punishment. The oldest known tattoo was found on “Iceman,” a mummified corpse who lived 5,200 years ago. The art of…
Some people are natural-born performers, leaders, artists, lawyers, doctors, or teachers. I like to say I was born to be a caregiver. Some of my first memories are watching over my younger sister and cousins while we were growing up. I like to think that caregiving is something that runs…
¿Cómo estás? 你好嗎 Ça va? How are you? With the holiday season upon us, people are getting together, hopefully safely, considering the persistent COVID-19 pandemic. While I always enjoy seeing friends and loved ones, I find it uncomfortable when I’m asked difficult questions like, “How are you?” While the phrase…
When we are diagnosed with neuromyelitis optica (NMO), it can feel like we’re being pushed into the deep end of the pool and left to sink or swim on our own. Navigating a whole new life with a rare disease can be confusing and overwhelming. Part of that feeling…
Gravity is my friend. Even if I’m tired, gravity will pull my snowboard and me down the mountain. I like to ride alone because I need to listen to music, which I only play in one ear so I can hear my surroundings. During the offseason, I build music…
Sometimes in life, the easiest decisions make the greatest impact. It probably wasn’t reasonable for a new couple to get a dog together, but that’s exactly how Marmaduke came into our lives. A wild idea led to an internet search, and as luck would have it, we were able to…
In the first five years after my neuromyelitis optica (NMO) diagnosis, my health took a sharp nosedive, which shook up everything I thought I knew about my future. Suddenly, my body was betraying me in a major way. My limbs stopped working properly, my vision was all over the…
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