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…
Daily living
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…
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…
Over the weekend, I took my daughter to her first in-person birthday party in almost three years. Fate can be cruel sometimes, which is how I found myself at an indoor jungle gym. I forgot how loud children’s screams and high-pitched voices can be, especially when amplified by the warehouse-turned-gym…
Five years ago, Aug. 28, 2017, began like any other day. I had taken the day off work to run errands, and I got up early to help my youngest daughter, Bella, get ready for school. She had just started fourth grade at a new school and had a long…
You’ve probably heard that we need to drink six to eight glasses of water a day. How many of you successfully hit that target? Don’t beat yourself up if you struggle to meet that quota, or, ahem, meet it with coffee instead. It may be an unpopular opinion, but I…
In my early 20s, I decided to drop everything and travel across Europe with my close friend Phil. Our trip was memorable for many reasons, including the fact that it was in Italy when I first felt unwell. It was a hot summer, and 14 years ago, most of Europe…
Europe is under an extreme weather alert. It’s so hot that certain trains between countries are not operational — the tracks are buckling under the extreme heat. This makes me think of climate in general and in particular how green space, plants, and gardening have positively affected my…
Recent Posts
- Living with NMOSD means learning how to combat decision fatigue
- Immunosuppressive treatment may lower DN-NMOSD relapse risk
- NMOSD has a way of opening our eyes to the little luxuries in life
- Adult brain can replace key cells lost in NMOSD, study finds
- Trial finds NMOSD treatment prevents disease relapses for years