Columns

Sick and Unemployed: What Do You Do When the Money Dries Up?

Those of us living with a rare or chronic disease frequently talk about hospitalizations, medications, symptoms, fears, near-death experiences, and so much more. But something we don’t often talk about are finances. When the COVID-19 pandemic descended upon us, the International Labour Organization warned in April 2020 that nearly…

My Real Medical Journey Began After I Left the Hospital

As my eyes slowly opened, I realized my vision was blurry. My head was throbbing, and I could taste blood. My right cheek felt itchy from the fibers pressed against it. But I could feel warm sunlight bathing my left cheek. I blinked hard to get my vision to clear…

You’re Not Letting Others Down; You’re Letting Yourself Down

It’s my favorite time of year: holiday season! That’s when we have Halloween, Thanksgiving, Christmas, New Year’s, and December birthdays for me and my kids. Having two autoimmune diseases and subsequent medical issues, however, makes it hard for me to participate in all holiday events. It’s easy to feel I’m…

Navigating Immunosuppression in a World Full of Germs

I can’t think of a worse personal fear then having two autoimmune diseases during a pandemic. Every cough I hear in public sends me into a panic. I hold my breath while walking past someone wiping their nose on their sleeve. I’m filled with anxiety when someone behind me in…

Being Rare: A Curse or a Golden Ticket to Good Medical Care

Expensive or subpar healthcare is the norm in the United States. There’s a staggering number of inadequacies in our system. But having a rare disease can suddenly give you a golden ticket to exceptional medical care. I became ill in September 2020 and assumed I had COVID-19 for a…

Living With aHUS Has Taught Me to Wear My Battle Scars With Pride

Escaping death doesn’t come easily. While my severe health issues resulted in emergency medical care and a rare disease diagnosis, they also left scars — physical and emotional. I’d been unwell for much of 2020. My whole family had gotten COVID-19 in March, so when I started developing random…

How My Miraculous Health Journey With aHUS Began

“You’re dying.” That was my first introduction to atypical hemolytic uremic syndrome (aHUS). I didn’t have a diagnosis yet, but that’s how my journey began. Rewind to April 2020, when my family had COVID-19. My oldest child was very sick, but my youngest child and I had zero…

One More Thing … or a Few

When I took this column on a year ago, I wasn’t sure I would have enough to write about each week. Once one learns to say “atypical hemolytic uremic syndrome,” how much is there to say about living with it? So before I committed to the gig, I did a…