Walking On Water - a Column by Shalana Jordan

Shalana “Shay” Jordan is a single mom of two boys who’s been adjusting to her “new normal” of aHUS for over two years. She also battles with Stage 4 Kidney Disease, Lupus, May-Thurner Syndrome, and severe Anemia.

She wants to take part in helping fellow rare disease patients adjust to and prepare for the new life that’s unfolding for them. Because life does end at diagnosis.

Shay also enjoys women’s health education, fiction writing, patient advocacy, photography, cruises, and international travel. She lives in South Carolina with her two boys.

As I Prepared for Surgery, I Dealt With End-of-Life Questions

End-of-life preparation: What a bleak and unsettling subject. Will you be buried or cremated? Who will take your children if you die young? How will your assets be dispersed? I didn’t think I’d have these concerns at age 36, when I almost died. Death is inevitable, unfortunately, but most of…

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…