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…
Coping methods
It’s been some time since my last neuromyelitis optica spectrum disorder (NMOSD) attack, and lately, I’ve started to realize just how traumatic the previous year was for me. I recognize that I’m holding in this trauma and still fear another attack, and it’s adversely affecting my life. With more…
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…
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…
A lot can change if you give it time. Seven months ago, I stood on a beach in Mexico, looking out onto the vast ocean. I remember wanting to feel hopeful after enduring flare-up after flare-up of neuromyelitis optica spectrum disorder (NMOSD), and yet also wondering if it’d just…
Last week, I was fired from my job. I’m still disappointed and angry but mostly confused. I can’t talk about the specifics, but I can share that major life stressors — particularly situations that can’t be undone, such as losing a job, enduring a divorce, or grieving the death of…
Note: This column describes the author’s own experiences with acupuncture for pain management. Not everyone will have the same response to the practice. Consult your doctor before starting or stopping a therapy. It’d been 14 years since I lay on a table, acupuncture needles gently placed along meridians meant to…
Last weekend, my older brother and I took a sibling getaway to Tampa, Florida, for his birthday, something we’d never done before. I was excited for the chance to connect with him, but with only three days, we had to be strategic about fitting in all of the activities. Due…
I thought I had put on a brave face and spoken in a calm tone. I’d told my daughter that I’d been to the emergency department at the hospital many times before, so it wasn’t a big deal. I’d be home before her bedtime. Three hours in, she started to…
During my recent family vacation, I made sure to take several mental pictures of the beach, sunrise, and calming blue skies. Over the past 15 years of living with neuromyelitis optica spectrum disorder (NMOSD), I’ve found it important to incorporate complementary therapies such as visualization, which has gotten me…
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