Walking On Water — Shalana Jordan

Walking on Water BANNER

Shalana “Shay” Jordan of central Florida, is a photographer, writer, retired educator, and mom of two boys. She’s navigating life with her “new normal” of battling atypical hemolytic uremic syndrome (aHUS), stage 4 kidney disease, lupus, May-Thurner syndrome, immune thrombocytopenia (ITP), Thrombic thrombocytopenic purpura (TTP), and uncontrolled hypertension. She received her aHUS diagnosis in 2020 at 36 years old.

Being a part of the company that publishes this website, BioNews, means she can take part in helping fellow rare disease patients adjust to the new life that’s unfolding for them. Hearing someone else’s experience with the “unknown” is invaluable. Being rare can be very lonely, but BioNews advocates daily to help patients realize they’re not so alone after all. Because life doesn’t end at diagnosis.

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The days surrounding my aHUS diagnosis were a lonely time for me

Life doesn’t get much lonelier than sitting alone in the intensive care unit (ICU) during the height of the COVID-19 pandemic, cut off from what was happening outside, yet the only patient on the floor who could move around. I went to the emergency room in September 2020, not feeling…

The warmer weather in Florida has made me feel alive again

I rub my eyes as sunlight bathes my face. I stretch and sit up, peering out of the floor-to-ceiling windows in our new home and over the balcony. My new view overlooks a lake here in Florida. As I stretch, I assess how my joints, bones, and muscles feel. Minimal…

Headaches and migraines are now a regular part of my life

I squint while looking forward, trying to get my eyes to focus. My head is throbbing so badly I can feel a pulse in my eyes. Every beat of my heart thumps pressure into my eyes, ears, and throat. I also feel it in my chest, feet, fingertips, and eardrums.

Establishing a new medical team after moving to a different state

Moving is simultaneously one of the most dreaded and exciting events in life. There’s the thrill of new beginnings, but trials and tribulations can also occur, especially during a long-distance move. Having just settled in a new state, I’m now in the thick of the next complication: finding a new…

A big move jettisoned my self-care and other healthy habits

The winds picked up, blowing ominous clouds into view. The blocked sun and cool winds made the temperature drop more than 10 degrees. We were hours behind schedule. I’d wanted to be on the road at 2 p.m. because rain was expected at 4. My legs and arms were hurting…

With aHUS, low platelet levels are my body’s alarm system

“We don’t believe that lupus is causing your medical emergency because you’re experiencing thrombocytopenia as well.” I blinked weakly at the doctor in front of me, puzzled by the news. I’d been admitted to the intensive care unit (ICU) just hours earlier and told I was dying of kidney failure.

Why I still worry about COVID-19 continuing to make the rounds

When I opened my eyes, all I could focus on was how much they were burning. They were watering, but that provided no relief because my tears were hot. No matter which position I lay in, I was uncomfortable. My skin was crawling and my mind was racing. My thoughts…