Columns

“When thunder rolls through my life, Will you be able to weather the storm? There’s so much I would give ya, baby.”  While these lyrics to Pink’s “Love Song” aren’t about chronic illness, they remind me of the roller coasters we encounter in our lives. I am…

When driving to doctors’ appointments for my son Cullen, we often listen to “The Danny Bonaduce & Sarah Morning Show.” They make us laugh, and we enjoy the topics. Last week, we were headed to an appointment when the show asked listeners to “call in and share which profession…

Living with congenital heart disease and pulmonary hypertension has taught me to let my physical health “be what it is.” This past year, giving myself permission to “be” helped me accept my bad days as they happened. I had to learn how to rest, listen to my body, pay…

As I write this, I’m due for a hospital visit tomorrow for a day of tests. And I have some pretty major pre-appointment anxiety. I haven’t had a face-to-face appointment to monitor my pulmonary hypertension in almost six months. While…

If you are battling a chronic illness, odds are you have also battled health insurance. My son Cullen managed his pulmonary hypertension (PH), received a heart and double-lung transplant, and survived almost six years post-transplant without running into any major health coverage roadblocks. Any issues were quickly resolved with…

Since my recent hospitalization, I am not allowed to drive for a while. This may seem like no big deal to some, but for me, driving is my little bit of freedom; it’s my independence. Usually, I only drive for small distances near my house. Some days, this is…

Lots of people count their steps using a Fitbit device or their phone, but for me it has been a total lifeline.  Being less active during lockdown made me worry that my fitness had declined and that I had generally deconditioned. Putting on a bit of…

It’s challenging to develop healthy coping styles upon receiving a shocking pulmonary hypertension diagnosis. My 8-year-old son, Cullen’s, PH diagnosis was like a magic wand that instantly transformed our family’s lives. For roughly two years we had struggled to find the cause of Cullen’s distress, but once we had an…

“Life is tough, my darling, but so are you.” – Stephanie Bennett-Henry My husband pushed me in my wheelchair through the main hospital entrance. My pulmonary hypertension (PH) medical team wanted me to avoid chaos in the emergency room. I am grateful that he made my health…

“How have you been feeling mentally? How are your anxiety and depression with all that is going on?” Every week when my therapist calls me for our appointments, I am asked how I am doing. Usually I respond sarcastically and say, “Oh, you know, just living the dream!”…

About 14 years ago, our oldest son, Cullen, started showing signs of disease. For two years, we lived with the frustration of not knowing the cause. Finally, we discovered he had idiopathic pulmonary hypertension (PH). Although relieved to finally have a name for his condition, the challenges associated with PH…

Expressing vulnerability has always been difficult for me. I thought that “showing my brave face” would keep others from worrying. I have always been more concerned with how everyone around me was feeling, and never gave myself permission to show worry, sadness, or fear. I focused on the positive if…