Daily living

The first time I sat in the infusion chair to receive Ultomiris (ravulizumab-cwvz), I felt something I hadn’t experienced for a long time after being diagnosed with neuromyelitis optica spectrum disorder (NMOSD): hope. I needed this therapy to bring stability back to my life, to spend less time in…

The moment I slip into a pair of high heels, something shifts. Not only do heels lengthen my legs, but they also boost my confidence, improve my posture, and give me a sense of power. It’s not just about fashion, but also what I associate with high heels: the ability…

I always know when it’s been a busy week because my body tells me so. My muscles ache, I feel weak, and a burning sensation finds new areas of my body to light up. I can’t just power through my weekend like others might, enjoying fun activities after the mundane…

My friend Liz flew in from Texas for a long weekend here in Toronto, and together we crossed something special off our lists: seeing one of our favorite bands live in concert. It wasn’t just a reunion, but a reminder of how music, friendship, and shared experiences can bring light…

After ordering my double-double coffee, I wait patiently in the second line for my order to be called. (If you’ve been to Canada, you know my double-double reference could only mean I’m at Tim Hortons.) Two patrons later, a woman places her order. I expect her to join the…

Some days I feel like I’m made of symptoms. Living with neuromyelitis optica spectrum disorder (NMOSD) means navigating a body that’s constantly shifting beneath me, unpredictable in ways that defy preparation. Speaking of symptoms: One moment, my spine burns with relentless pain. The next day I’m ravenous, only…

People diagnosed with neuromyelitis optica spectrum disorder (NMOSD) who lose their jobs or cut back on their hours likely contend with vision loss, worsening pain, the use of walking aids, and frequent fatigue or depressed mood, an international study reports. “Developing a robust set of disability guidelines to protect…

Before I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), I never gave much thought to routine. I’d sleep when I felt tired, exercise when I had the motivation, and take life as it came. But after NMOSD entered my world, I quickly learned that unpredictability was no longer…

I was born in a small town two hours away, but Toronto has been my home for more than two decades, and it’s where my husband and I are raising our daughter. Recently, while hosting one of her schoolmates for the week, we decided to play tourists in our own…

In the morning, I like to wake up a few minutes before my family does. As I sip my tea and watch the sunlight spill through the windows, I usually use that quiet time to mentally prepare for the day ahead. But lately, things have shifted. I’m 43, and this…