My best friends are my rock. They are my confidants, my vault, and the keepers of my dreams. They drop everything, no matter the hour, no matter the chaos, to be there for me. If loyalty were a sport, they’d be Olympic level. And while I live with neuromyelitis…
caregivers
At 44, I’ve reached the age where life starts handing out plot twists no one asked for. Parents get sick. Friends, the same ones I once stayed out too late with, now text me about big health issues. And every so often, someone disappears entirely, leaving a silence that feels…
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…
Neuromyelitis optica (NMO) is the illness that robbed my youngest daughter, Bella, of her innocence and a big part of her childhood. It’s the illness that appeared to us overnight in 2017, changing our lives forever. It’s what I was instructed to Google when Bella was diagnosed. NMO…
Most people can agree that life is one big roller coaster of highs, lows, twists, and turns. This is especially true for anyone living with or caring for a loved one with neuromyelitis optica (NMO). When my daughter Bella was diagnosed with NMO in 2017, our world…
In the weeks between Thanksgiving and Christmas, I usually spend some time thinking about my loved ones and what they mean to me. This year, I thought I’d share a love letter to my husband of 12 years, Mike, in hopes that other neuromyelitis optica (NMO) patients might relate.
When I first became sick with neuromyelitis optica (NMO), people often told me how sorry they were. I believe they genuinely meant it, but it’s always an uncomfortable and awkward conversation for both parties. As the patient, I never want people to feel sad, so my natural response…
Being diagnosed with a rare illness such as neuromyelitis optica (NMO) can be devastating, affecting everything from day-to-day life to relationships, work, and finances. When my youngest daughter, Bella, was diagnosed with NMO in 2017 at the age of 9, she spent six weeks in the hospital, and…
A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt be an integral part of discussions on Rare Disease Day 2022, which brings international awareness about the more than 300 million people living with rare disorders. Part of that…
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When the Caregiver Needs Care
At first glance, many might say that our family appears totally healthy. However, my daughter Bella, 13, fights neuromyelitis optica (NMO) every day, and despite being her caregiver, I have health issues of my own. When Bella got sick in August 2017, I was almost done with the classes…
Recent Posts
- 2 approved treatments for NMOSD may work better than off-label one
- It’s important to realize when the caregiver needs care
- MRI scan of waste system in brain may track NMOSD severity, progression
- My mom’s example of strength still guides me in life with NMOSD
- Short course of approved drug effective for treatment-resistant NMOSD