Columns

My son’s pulmonary arterial hypertension (PAH) was idiopathic, which means it developed suddenly with no known cause. He was healthy until he became symptomatic at 6 years old. Before then, we only brought him to the doctor for checkups and the occasional ear infection. He was an early walker…

Life with chronic illness is not easy. My days are unpredictable, and I often feel unsure and uneasy about what lies ahead. Some days I feel productive and physically able, and I have sufficient energy for the things I want to accomplish. At other times, I feel completely…

I wish I had a dollar for every time I’ve been described as strong, but what if people knew my weaknesses, unfathomable sadness, and heartbreaking mistakes? As a caregiver to my son, I’ve had to accept his reality and mine. I’m not a pillar of strength or perfect in what…

In the last few months, I have spent more time in the hospital than at home. When I am discharged, I feel the anxiety that is normal for me after a hospital stay. After a few days of being home, I begin to feel relief…

I struggled with the title for my column because what I write about will be from my perspective as caregiver to my son. However, using the word “caregiver” was bothering me because who I am above all else is his mom. When someone refers to me as a caregiver, it…

A month ago, I wasn’t sure when I would be writing again. I wrote my last column prior to a life-changing surgery, hoping that it wouldn’t be my last post. Three weeks ago, I was heading into the biggest surgery I can remember having.

My pain levels vary. Some days I feel “OK,” and I can go outside and enjoy myself. At other times, my pain levels are higher, and any activity leaves my body screaming by day’s end. I have moments when the pain becomes all-consuming.

When I was younger, I was always “waiting” for something to happen. I can remember at 10 years old counting down the days and hours until the next big social studies test was over. I would think, “By this exact time two days from now I will be…

“Hi, this is Brittany calling again. I’m sorry to bother you, but did you get a chance to speak with the doctor?” I have repeated that line numerous times while calling doctors’ offices. I have spent countless minutes on the phone with and sending emails…

“Rate your pain on a scale of 1 to 10, 10 being the worst you ever felt.” If I have learned one thing over the past few decades, it’s that pain is almost guaranteed when living with chronic illness and pulmonary hypertension.

My anxiety skyrocketed last month without any medical triggers. I celebrate my 26th birthday this weekend, and my third transplant anniversary is a couple of months away. I’m doing great physically, but I don’t feel like…

“It could be worse.” It’s amazing how quickly these four words make my head spin. People living with chronic illness are well aware of the fact that “it could be worse.” I know that I could be in a hospital…