In the decade that I’ve lived with neuromyelitis optica spectrum disorder (NMOSD), I’ve connected with many other patients who say they’ve had trouble overcoming the heartache of not knowing who will show up for them in times of crisis. It’s easy to recall my similar pain when I’m speaking…
quality of life
It’s been over two weeks since we were required to “spring forward” for the arrival of daylight saving time (DST). As a neuromyelitis optica spectrum disorder (NMOSD) patient, I’m not a fan. While the concept was introduced as a way to maximize daylight hours during the warmer months,…
Biting into a raw lemon is always a shocking experience no matter how many times you’ve done it. The smell of a lemon may be fresh and inviting, but the taste? Not so much. Yet when you take a sip of fresh lemonade on a hot day, it’s pleasant and…
A significant proportion of neuromyelitis optica spectrum disorder (NMOSD) patients in the U.S. lost employment, work hours, and wages after their diagnosis, as motor and visual disability and symptoms like pain and fatigue hurt their productivity, a study has found. Older patients, those using mobility aids, and those…
I’ve always been a tech nerd, falling in love with the newest tool in the Internet of Things, such as my Fitbit and phone, which can display various body statistics and control my transcutaneous electrical nerve stimulation (TENS) unit. Technology has become even more important…
March 1 kicks off NMOSD Awareness Month, which aims every year to shed light on the experiences of people living with neuromyelitis optica spectrum disorder (NMOSD). The Sumaira Foundation (TSF) has led the month-long advocacy initiative in the U.S. since 2016, promoting efforts to spread knowledge about the…
Describing myself has always been a challenge. I’m as complex as the next person, but I feel like I’ve been a chameleon my entire life, always adapting to my surroundings to survive. That drive to survive is how I’ve become edgy, direct, and an advocate for various causes. This edge…
I’ve been thin. Very thin. And I’m currently overweight. Very overweight. It’s not lost on me that in this lifetime, I’ve experienced both ends of the weight spectrum. I can make excuses for that, but the bottom line is that my body has endured sharp weight fluctuations for many reasons…
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…
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…
Recent Posts
- Early trial of experimental CAR T-cell therapy seeks people with NMOSD
- Because patients are the reason for the research, we deserve a seat at the table
- Disability in NMOSD patients may worsen even without relapses
- Aging with NMOSD: How I’m facing the future with hope
- Smoking hinders NMOSD relapse recovery, review study shows