Columns

In last week’s column, I discussed my son Cullen’s transition from pediatric to adult care at a medical center not associated with his previous team. My focus has been on preserving the level and quality of treatment that led to almost six years of post heart and…

One of the hardest parts of having chronic health problems is the guilt. Many people struggling with complex conditions are branded “lazy.” And sometimes we even brand ourselves. Before I was diagnosed I was always exhausted, had very little energy, and would often take naps in…

If I asked you which three words you find most difficult, how would you answer? Some may say, “I love you.“ Others may say, “there’s no cure.” But “I need help” are the three most difficult words for me to say, maybe because I’ve never been one to ask…

It was a bittersweet experience when my parents sold my childhood home. I grew up and left for college, and my parents were moving into the home of their dreams — life was moving forward as it should. But packing up memories and leaving the familiar hallowed halls of my…

Whenever I am feeling defeated by my body or mind, I throw on some Whitney Houston classics. One of my favorites is the song “Greatest Love of All.” The lyrics to this song are so uplifting and positive. They have the power to help me reflect and make changes…

Before I got sick I thought doctors knew everything. I thought doctors would know exactly what to do if I was ever unwell, and that I could just mindlessly follow their advice. My experience with chronic illness couldn’t be more different. I remember the first time…

Among the many challenges of living with a life-threatening condition are the daily demands it places on both the patient and the caregivers. A life-threatening illness isn’t something one can push to the back of the mind. Every day, people face the need to assess and address myriad symptoms, side…

As a child, I enjoyed writing. My Moma always reminds me of the “I’m sorry” letters I wrote when I did something wrong. Writing cards and notes and mailing them is something I have always enjoyed. Once my parents divorced, we moved around often. This made it difficult for me.

When I first named my column “Recharged and Rewired,” the word “recharged” referred to my use of oxygen. I was thinking of my oxygen home filler system I needed to “recharge” my portable oxygen tanks. At the time, I didn’t go anywhere without making sure…

Society doesn’t make it easy for people with disabilities and health conditions, including in the workplace. Historically, people with disabilities have struggled to hold down jobs. People with pulmonary hypertension (PH) rarely work full time, as it can be physically…

I attempt to take a deep breath, but tightness squeezes my chest. Pain follows, as if someone is crushing not only my lungs but my ribs, too. I woke up the Friday before Memorial Day to this overwhelming yet familiar scenario. Because of pulmonary hypertension (PH), I also battle…

The lyrics in Natalie Merchant’s song “Wonder” make me think of my son, Cullen: “Newspapers ask intimate questions / Want confessions / They reach into my head / To steal the glory of my story.” Not that there is glory in living with pulmonary hypertension (PH) or receiving a…