Columns

Life Is Tough, but So Am I

“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…

Maintaining Mental Strength While Physically Weak

“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!”…

Rooted in the Love of Cullen’s Grandparents, We Are Strong

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…

Giving Myself Permission to Feel the Hurt

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…

Stress Is Piling On, Which Exacerbates PH Symptoms

“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…

My Son Is Taking Over His Own Care Management

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…

I’m Not ‘Lazy,’ I’m Sick

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…

The Three Words That I Find Most Difficult to Say

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…

How to Survive a Medical Move

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…

It’s Important to Be Your Own Health Advocate

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…