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When I first became sick with neuromyelitis optica (NMO), people often told me how sorry they were. I believe they genuinely meant it, but it’s always an uncomfortable and awkward conversation for both parties. As the patient, I never want people to feel sad, so my natural response…

Last month was my 41st birthday. A celebration is often a pipe dream, resulting in me feeling drained as the day approaches and then doing nothing. This year was different, though; I had no big plans except eagerly waiting while my husband installed my new birthday gift. I had requested…

There are so many things I still want to do in life. I never stop. Perhaps it’s because I feel that I’m up against a clock. I constantly wonder how long it will be until my neuromyelitis optica (NMO) takes over and I am further limited in energy and…

The greatest challenge I’ve had to overcome as someone with neuromyelitis optica (NMO) — something I’ve heard echoed by other patients — is the need for better support. This begins with the expectations we each have of those in our lives. When those expectations aren’t met, we…

Being diagnosed with a rare illness such as neuromyelitis optica (NMO) can be devastating, affecting everything from day-to-day life to relationships, work, and finances. When my youngest daughter, Bella, was diagnosed with NMO in 2017 at the age of 9, she spent six weeks in the hospital, and…

While here in Canada we celebrate Thanksgiving a little earlier than our friends in the United States, I feel it works to my advantage. I treat the Thanksgiving holiday — which falls on the second Monday in October in Canada — as the start of a period of…

I am scared of dying. This is a truth I have avoided saying out loud or acknowledging for the last 13 years. When I was diagnosed with neuromyelitis optica (NMO), I Googled the disorder, and the internet only gave me five years to live. My loved ones found…

Advocacy is the action of advocating, pleading for, or supporting a cause or proposal. I’m a firm believer that we’ve all been an advocate or benefited from advocacy at least once in our lives. Personally, I’ve been able to experience the blessing of both having an advocate and working to…

My family has recently become obsessed with the “Overcooked!” video game. With up to four players, we work against the clock chopping vegetables, frying fish or meat, and assembling plates, all while going up against obstacles like the frozen tundra or mice that steal your supplies. It’s incredibly…

It feels like there’s a test for everything. As I hit milestones with neuromyelitis optica (NMO), a rare autoimmune disease that can affect the spinal cord and optic nerves, I am subjected to more tests. The latest was a bone density test, also called a dual-energy X-ray absorptiometry (DEXA)…