Columns

A deep yawn escaped my lips before I even realized it, and I immediately regretted it. I reached for the left side of my face, cradling it like a baby animal. Pain shot through my gums, molars, jawbone, facial tissue, and even into my sinuses. It was just one of…

I pushed the door open and was met with blinding sunlight and strong sea winds. The smell of salt water and grilled chicken filled the air, as did the sound of Caribbean steel drum music. I traversed several decks on the cruise ship — moving around lounge chairs, descending multiple…

Note: This column describes the author’s own experiences with Soliris (eculizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I’ve endured five years of needles, regular blood work, IVs, bone pain, brain fog, loss of hair, eyebrows, and eyelashes,…

There I was five years ago, sitting in my car much longer than I should have. Just the thought of walking to the pharmacy was daunting, nearly panic-inducing. The longer I stared at the Walmart entrance, the farther away it got. I just wanted to go home, bathe, and get…

A dull but fierce ache swept through my left leg like wildfire. I was sound asleep until a charley horse ripped through my calf muscle and woke me. The pain was so intense that I gasped and ripped away the blankets to assess my leg. My fiancé and I watched…

Typically, when someone wishes you a happy anniversary, it’s to celebrate another year in a relationship, marriage, or even a career. It’s a time to reflect on all the effort put in, the adventures experienced, and the achievements made during that time. This week marks an important five-year anniversary for…

Being chronically ill and disabled long before I turned 40 is not how I expected my life to unfold. Rare diseases, permanent organ damage, and a multitude of comorbidities have forever changed my future. While it’s no secret that there are negative aspects to living with a rare, chronic illness,…

This column describes the author’s own experiences with Soliris (eculizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Dialysis, blood transfusions, muscle loss, isolation, loss of appetite, infusions with damaging side effects, and the hallway echoes of the slow…

Fifteen milliliters of children’s ibuprofen, a 75-count pack of Clorox disinfecting wipes, boxes of Kleenex with aloe, a large can of Lysol disinfectant spray, filled hand-soap dispensers at each sink, an empty trash can, rubber gloves, and antibacterial dish soap. That all may sound like an advertisement for a drugstore,…

It was the first time in four weeks I’d been hungry — actually, truly hungry. My mouth watered at the thought of a fresh, hot breakfast. During my stay in the intensive care unit (ICU), I’d lost 20 pounds and a great deal of muscle mass and was growing weaker…