self-care

New Hobbies That Test My Hand Dexterity? Sure!

Trying something new will always intimidate me. While my head might feel prepared, my body doesn’t always cooperate. This year my husband and I agreed to take in a homestay teenager who is studying dance at the same studio as our young daughter, Sophie. Sydney, our 15-year-old homestay daughter, is…

The Ongoing Process of Grief

It rained the day before and after, but on the day we buried Dad, the overcast weather parted for a picturesque blue sky, complete with rolling white clouds. For mid-April, it could’ve been a cold, miserable day, matching our mood. Instead, the sun warmed us, so we didn’t need…

Food for the Soul and the Body

When I walk through the doors of Satay Sate, a local Indonesian restaurant, the aromas that hit me instantly remind me of my childhood. I first ventured there after my dad died, and I was brought to tears at my first bite. It was like they had stolen Dad’s recipes.

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…

The Struggle Is Real: How I Cope With Patient Burnout

In my circle of friends, we often joke that being a rare disease or chronic illness patient is a full-time job. For me, living with not just neuromyelitis optica (NMO), but also several other life-altering diseases that require constant treatment, takes a lot of energy. I must attend numerous appointments…