Columns

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…

The world is re-opening. People are returning to bars, restaurants, and shops. They’re reuniting with loved ones and friends. I’m terrified. I’ve been locked down for over three months, but the last couple of weeks have been the most challenging. The pandemic has been…

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” – Matthew 6:34 I’m noticing that my pulmonary hypertension symptoms are raging throughout my body. For those who are unaware, stress can exacerbate PH and its symptoms. For…

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.