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…
4 a.m.: I moan as I squint my eyes and cover them when every bright, overhead light turns on. I’m greeted by a bubbly young phlebotomist who’s here to draw blood. She raises the bed 2 feet, the lift inside making a slow whirling sound as it creeps toward the…
The slow, steady beep of my heart monitor echoed like a ticking clock. Sometimes the noise seemed to move farther away, while at other times, it seemed right next to my ear. Every 30 minutes there’d be a loud tick, followed by the hissing of my blood pressure cuff inflating.
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