2023 was an incredible year for my family and me, full of growth, learning opportunities, job promotions, travel, mostly good health, and advocacy. At the beginning of last year, I set a goal to use my voice and spent the year advocating for my 15-year-old daughter, Bella, and everyone…
Daily living
It had to be something special for me to break my silence on X (formerly known as Twitter). I had to share my support for actress Christina Applegate after she appeared at this year’s Emmy Awards in mid-January. Applegate has multiple sclerosis (MS), which has many similarities…
I consider my ability to swallow multiple pills at the same time both a skill and a necessity. Some days, I’ll look into the drawer of my nightstand and be overwhelmed by the number of pills prescribed to me. This realization can drag me into a moment of sadness, a…
Second in a series on visiting Disney World with a disability. Read part one. Big crowds make me nervous. Should someone bump into me, I can easily lose my balance. And the risk of infection weighs heavily on me, given my weakened immune system. A nearby sneeze triggers…
First in a series. Christmas, a bustling time for all, becomes particularly challenging for patients like me who have neuromyelitis optica spectrum disorder (NMOSD), as it can take us out of our routine and add unwanted stress. One holiday memory stands out and is yet to be beat:…
As November closes, I’m reflecting on how grateful I am to have my family. Dear Family, I know none of you chose this life as a caregiver. Neither did I, but that doesn’t change the guilt I feel about you having to help me manage my health. The day…
The snoring emanating from my dog, Magnus, is distinctly different from a human’s. His gentle, rhythmic purr, characteristic of pugs, has a mesmerizing yet endearing quality. It’s seamlessly woven itself into the fabric of my daily life, serving as a comforting soundtrack to my existence. When my previous pug,…
Knowing when to make that crucial trip to the emergency room is a concern that plagues everybody with neuromyelitis optica spectrum disorder (NMOSD). It’s a dilemma that leaves us anxious and unsure. I’m battling a bladder infection, and admitting I have one typically fills me with embarrassment. But each…
As I do on any typical morning, I peered at my reflection in the mirror, squinting until I managed to insert my contacts. On this particular morning, however, despite my blurred vision, I couldn’t help but notice a peculiar bump on my right ear. “What fresh nightmare is this?” I…
I love the fall. It’s the perfect balance of weather between the summer’s heat and the winter’s snow. I love wearing layers of clothing, and when the leaves on the trees change their colors it means we’re closer to my favorite holiday, Thanksgiving. I also love the fall because there…
Recent Posts
- NMOSD patients report lower sleep quality, study shows
- The bra line battle is a wardrobe crisis for women with NMOSD
- New antibody may explain mystery cases of NMOSD-like disease
- Are those mystery aches and pains due to NMOSD or regular life?
- NMOSD therapy linked to fewer attacks, less disability in Chinese study