Columns

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…

Take This Job and Love It

This is my penultimate column. That sounds very important and distinguished, doesn’t it? In fact, it simply means this is the next to last column I will write for aHUS News. I started last May with the thought that I could commit to it for a year, then reassess. By…

Happy Birthday, and Many Happy Returns

Shhhhhh! Today is my husband’s birthday. I’m throwing him a surprise party, and you’re all invited! In fact, you’re already here, because it’s virtual and I’m hosting it remotely. So let’s get planning … Editors: Hide behind the colon. Friends and family (who loyally read my column) can all conceal…

Abstinence Makes the Heart Grow Fonder

It’s just about two more weeks until Easter. I am, of course, looking forward to the annual celebration of the greatest miracle of all time. But due to the sorry state of my spiritual development, I’m also counting down the days until we return to our vices. Long before I…

A Time for Everything Under Heaven

My wise old grandfather used to say, “You’ll know you’re old when your priest and your doctor are younger than you.” And so it has come to pass. My husband, Ronald, and I noticed it a while ago, actually. Not only that, even the bishop and the medical specialists are…

It’s Time to Reconsider Daylight Saving Time

Here we are again, recovering from the annual biological burglary of daylight saving time. It snuck into our home a week ago, in the wee hours between Saturday night and Sunday morning, and made off with a perfectly good hour while we slept. As if we wouldn’t notice. Ha! The…