Columns

Managing Acute Stress in the Days Before a Procedure

As I prepare for a small diagnostic procedure this week, I’m noticing that my anxiety has skyrocketed. This is happening for two reasons. The first is that I have a full memory bank of physically uncomfortable and painful procedures that have made me quite sensitive. My years with illness have…

Self-advocacy Is an Important Part of Patient Treatment

Living with pulmonary hypertension (PH) is a constant challenge. If I’m not educating myself, I’m educating my family and friends, and at times, even my medical team. Yes, the members of my medical team are experts in medicine, but I am the expert of my own body. Recently, I…

I’m Slowing Down Like My Life Depends on It

I’ve always considered myself an “on” person, somebody who says yes to the boss or co-worker, friend or relative, thing or event asking for my attention and energy. I’m like a faucet running all the time, never slowing down to make time for myself. Being on all the…

Celebrating 50 Years of Good Times and Bad

Have you ever met someone and instantly felt like you’ve known them forever? I’ve experienced a rather twisted version of this. In a previous column, I described pulmonary hypertension (PH) as a toxic person rather than a disease. PH had such an immediate impact on my family that by…

What Do Caregivers and Succulents Have in Common?

I appreciate the camaraderie among caregivers that I have experienced. We find understanding, support, and comfort from one another, no matter what illness we are dealing with or the age of our patients. Caregiving can be an emotional, challenging, and rewarding responsibility, and that reality alone is what unites us.

Feeling Different and Wanting to Tell My Story

The memory is impeccably clear in my mind, tied up tightly in the damp smell of chlorine. I’m sitting on a bench in a humid concrete room while my peers splash boisterously around in the pool. They in their swimsuits, me in the required gym uniform. They, “normal.” Me, “the…

Learning to Love My Body Despite the Effects of PH

Some days, as I catch a glimpse of the woman in the mirror, I find the reflection unrecognizable. The dark, weary circles around the eyes, the protruding cheek and collarbones, the pale, bluish skin — that’s me. This can leave me startled and discontented, with tears running down my face.

‘I Apologize Too Much! Sorry for That’

I think people in the pulmonary hypertension (PH) community tend to apologize too much. We are so good at it, and we often say we are sorry when it isn’t necessary or even appropriate. It’s a topic we have fumbled with often in the Pulmonary Hypertension News Forums. A…

Helpful Tips I Learned While Raising a Child With PH

Parents sometimes joke that they wish their child came with an instruction manual. If there were a manual for kids, I would’ve had to toss out my son Cullen’s manual when he was 8. That was the year he was diagnosed with pulmonary hypertension (PH). The PH diagnosis made…

The Challenges of Traveling With Chronic Illness

When we hear the question “Did you pack everything but the kitchen sink?” my family’s answer has always leaned toward “Yes.” Since being diagnosed with pulmonary hypertension (PH) in 1999, my family has never been able to travel lightly. But the efforts we’ve put into traveling have always outweighed the…

8 Months Later, My Post-COVID-19 Symptoms Linger

What happens when one still suffers from COVID-19-related symptoms long after infection? Unfortunately, I am one of those people. My medical team is comprised of multiple specialists, along with my primary care doctor. Most of this team is clueless about the long-term effects of the virus, cringing as we…