When I drive, the car is like a sold-out concert at Madison Square Garden in New York City. I love singing with a deep-rooted passion along with songs that either have meaningful lyrics or just a sound that somehow resonates with me. I have a wide range of musical tastes…
When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), I was intimidated by the idea of being treated with an intravenous medication and having to strictly follow an infusion schedule. I feared the unknown and wasn’t sure what to expect. Over time, though, I grew more comfortable…
As a patient with paroxysmal nocturnal hemoglobinuria (PNH), I experience a variety of symptoms every day. In a previous column, I discussed my most common symptoms, such as fatigue, headaches, and shortness of breath, but the list is much bigger. Sometimes it’s hard for me to figure…
The first months of the year are typically filled with New Year’s resolutions, early winter sunsets — and the sounds of coughing, sneezing, and nasal congestion. Every year, it seems like I or someone around me gets sick. Protecting ourselves in public isn’t easy, but we can take precautions like…
One of my favorite reality TV shows, “Selling Sunset” on Netflix, is about a real estate firm that sells luxury homes for millions of dollars. The agents celebrate each sale by ringing a huge bell that hangs from the ceiling and is loud enough to echo throughout the…
Comforting people when they’re going through difficult times or looking for support is hard to navigate. I’ve been on both sides of this situation, especially since I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH). It’s tricky to know the right thing to say or do. I recently connected…
One of my favorite hobbies is watching competitive reality television shows. “Survivor” and “The Amazing Race,” both on CBS, are two of my guilty pleasures to pass the time. I’ve been a fan of them for many years and dreamed of one day being a contestant. However, after…
Have you ever listened to a song and connected with the lyrics instantly? When you want to keep the song on repeat, or Google the words and sit staring into space while interpreting them? Listening to music has always been my favorite way to escape reality; in fact, certain songs…
We’re now well into the holiday season of celebrating, sharing family time, and offering gifts! As a person with paroxysmal nocturnal hemoglobinuria (PNH), I’m excited to put forth the following three items for your seasonal giving. I have two already and plan to ask for the third this year.
I recently accompanied my grandmother to one of her doctor appointments because she’d expressed feeling nervous and having boundaries when it came to her health. I asked the doctor questions, relayed his message in simpler terms to my grandma, and spoke up as her advocate. The doctor was impressed by…
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