Having a rare disease such as neuromyelitis optica spectrum disorder (NMOSD), especially when it’s an invisible disease, is like being a double agent. While some people in my life know about my health challenges, I don’t broadcast them to everyone. In such cases, withholding my NMOSD thus becomes a…
Relationships
Sometimes I stand in the shower, and time just slips by. I numbly run my fingers through my thick hair, and I’m immediately brought back to reality by the chunk of hair in my hand. Hair loss can be a side effect of several medications, including prednisone,…
Life hasn’t always been easy for me, or for any of us, for that matter. I’ve seen and experienced things that no one should have to face. As the saying goes, what doesn’t kill you makes you stronger, right? A big part of my perspective comes from my youngest…
I recently celebrated my mother’s birthday, which was lovely because it was a chance to see family members I hadn’t seen in a while. Our adult lives are busy, so regrettably, we don’t get enough time to sit around, eat a meal, and check in with one another. I’m grateful…
Living with neuromyelitis optica spectrum disorder (NMOSD) often means navigating a journey filled with both triumphs and challenges. While some days I feel that I’m managing the disease well, I quietly suffer on others. For loved ones and caregivers, understanding the subtle signs that indicate a rough day for…
I sometimes feel like I’m laughing in the face of death. When I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), all my internet searches informed me that I’d have about five years to live. Now, more than 14 years later, I’m still going strong with no signs of…
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…
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…
Serving our community should matter to all individuals. I’ve always believed that if each person were to dedicate time to a charitable cause, our society could bring about profound change. Just imagine the kind of world we could create together. Even though I came of age in a household with…