Relationships

I am scared of dying. This is a truth I have avoided saying out loud or acknowledging for the last 13 years. When I was diagnosed with neuromyelitis optica (NMO), I Googled the disorder, and the internet only gave me five years to live. My loved ones found…

My family has recently become obsessed with the “Overcooked!” video game. With up to four players, we work against the clock chopping vegetables, frying fish or meat, and assembling plates, all while going up against obstacles like the frozen tundra or mice that steal your supplies. It’s incredibly…

In the weeks after my youngest daughter, Bella, was diagnosed with neuromyelitis optica (NMO) in 2017, work and finances weighed heavily on my mind. I’d started a new job a month before Bella got sick, so I didn’t have any paid time off and didn’t qualify for the Family…

If there were a spot on my social media profiles that asked me to describe my position on religion, I’d write, “It’s complicated.” That’s because I’ve had a few too many falling-outs with my God. ‘Why me?’ I was in my early 20s when I suffered my first major…

August 2017 was a busy and exciting time for our family. My youngest daughter, Bella, and I had just spent the weekend helping my oldest daughter move into her dorm room and begin her freshman year of college; my son had just begun his freshman year of high school; Bella…

“Let’s talk about sex, baby/ Let’s talk about you and me/ Let’s talk about all the good things/ And the bad things that may be/ Let’s talk about sex.” — Salt-N-Pepa My friends and I used to giggle every time this song came on the radio in the early 1990s.

March 25 was a day I won’t soon forget. My 13-year-old daughter, Bella, and I jetted off to Boston to attend The Sumaira Foundation’s 5th Annual NMO Awareness Gala at the Mandarin Oriental Hotel the following day. The trip took a few years of planning and preparation, including surviving…

People say that dogs are man’s best friend. In our family, Roxy, our 3-year-old Australian ridgeback rescue, is my 13-year-old daughter Bella’s best friend. Bella has always loved animals, which thankfully runs in the family. When she was hospitalized in 2017 due to a major neuromyelitis optica attack, she…

Bionews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…

During the six weeks that my daughter Bella, 13, was hospitalized at Children’s Hospital Colorado for a neuromyelitis optica (NMO) attack in 2017, my husband and I kept vigil at her bedside. Too worried to sleep, we prayed for a miracle every night. As soon as we received Bella’s…