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,…
Columns
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.
Employment: Dare I say it’s a necessary evil? American culture is very career-focused. Everything costs money, which most people earn by working. And with the cost of living creeping higher each year, many are working more than ever just to make ends meet. But what happens when you suddenly become…
What constitutes a rare disease? In the U.S., the Orphan Drug Act defines a rare disease as any disease affecting fewer then 200,000 people. The National Organization for Rare Diseases (NORD) reports that over 10,000 rare diseases exist. That’s way more than I would’ve imagined. Let’s compare a…
Star fruit: It’s sweet, crisp, bright, refreshing and, for me, potentially deadly. Starbucks’ Kiwi Starfruit Refreshers (now discontinued), star fruit margaritas, or any other star fruit treats I once enjoyed are all a “no” for me now. Sadly, the fruit, also known as carambola, is something I just can’t…
Thrombocytopenia, liver failure and hematoma, hysterectomy, end-stage renal disease, hypertrophic cardiomyopathy, uncontrolled hypertension, chemotherapy-like side effects, muscle atrophy, post-traumatic stress disorder, chronic fatigue, edema, May-Thurner syndrome, nerve damage, and anemia. That’s a “quick” list of the comorbidities that accompanied my atypical hemolytic uremic syndrome (aHUS). Being diagnosed with a…
Last in a series. Read parts one and two. A bead of sweat rolls down my forehead and over my brow. Flinging the bedsheets away gives me a blast of crisp cool air, and I realize how clammy and hot I am. I didn’t feel well when I…
Second in a series. Read part one. Which is more important, your cellphone or your internet? That can be a tough decision, driven by finances and circumstances. On one hand, imagine you have a chronic illness and you need a phone for emergencies. On the other, imagine your phone…
Recent Posts
- I’m in the midst of a fashion rebranding I didn’t know I needed
- aHUS patient, 25, makes full recovery with Ultomiris after virus: Report
- Sometimes we need to remind ourselves of the importance of rest
- Alcohol-induced pancreatitis triggers aHUS in man: Case report
- aHUS symptoms differ in children, adults with same C3 variant
- Brothers with shared mutations develop different TMA patterns
- The days surrounding my aHUS diagnosis were a lonely time for me
- Delayed complement inhibition resolves pregnancy-related aHUS
- What comes next: Telling my story after an aHUS diagnosis
- Hidden rare mutations may help explain mystery cases of aHUS