Columns

“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…

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. “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…

Living with a rare and chronic illness is undoubtedly one of the hardest things I’ve ever done. Nearly dying in the hospital and spending almost two months in the intensive care unit was just the beginning. The experience changed everything in my life — but ultimately, it’s changed my life…

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. A few years ago, I lost my home and career, my car broke down beyond repair, and I nearly died from a rare disease. I was alone in the hospital and apart from my…

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…

I make short, feathery strokes with a dark brown eyebrow pencil. Then I apply two carefully guided, wet swipes with black eyeliner glue. Next come three rows of 3D eyelashes, combined and cut to fit my large eyes. Finally, I affix a long and layered dark brown wig with a…

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. Pain throbs from the tips of my toes to the top of my left thigh. It echoes the strong, solid melody of my heartbeat. The ache worsens no matter how much I rub my…

Pain shoots through my jaw and into my sinuses and eyes. The ache throbs to the rhythm of my heart like a drum getting louder and louder. Decay forces me to cover my mouth when I laugh. I never lean in close to a friend to whisper because of bad…

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. “Sometimes I worry about what life would be like if you died.” Upon hearing this, I felt a pang of pain in my heart and a knot in my stomach. I looked in the…

My mouth was dry and my throat burned. It was becoming hard to swallow. I hadn’t been allowed to drink or eat anything for hours because I’d been admitted to the emergency room and was hit with a barrage of tests. A young and apprehensive nurse came in holding a…