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.

My comical attempts at shaving in the shower

Precariously balancing my right foot on the ledge proved difficult after having lost so much muscle mass over the past six months. My left leg, which was supposed to be supporting the bulk of my weight, began to tremble. Steam rose around me, setting the scene, but it made me…

Underestimating my medication regimen was a dangerous mistake

“Take one dose, three times daily.” “Take one dose, once daily with food.” “Take one dose every four to six hours or as needed.” “Take one dose with 8 ounces of water.” Like me, many people with chronic illness have to manage a complicated list of medication instructions every day…

The infamous question that always irks me

“How are you feeling?” Just hearing that question releases a hot flash up my neck. My stomach drops, and before I know it, my eyes are rolling. That’s because I know I’ll respond with a lie. I think most people with chronic illness are frequently asked that question. It happens…

Grappling with the cost of healthcare while managing a rare disease

Several years ago, terms like “deductible,” “in and out of network,” “PPO,” “Medicaid,” “Medicare,” “Medigap,” “SNAP,” “prescription coverage,” and “disability” were thrust upon me suddenly and without warning. I had to learn them quickly to continue receiving lifesaving care. I was sitting in a hospital…