Pulmonary Hypertension News Columns

July 10, 2020July 10, 2020

Giving Myself Permission to Feel the Hurt

Pulmonary Hypertension News Columns

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 ... Read more

July 6, 2020July 7, 2020

In a COVID-19 World, It’s Not ‘Back to Normal’ for Those With Chronic Illnesses

COVID-19 Columns, Pulmonary Hypertension News Columns

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 ... Read more

July 6, 2020July 6, 2020

Stress Is Piling On, Which Exacerbates PH Symptoms

Pulmonary Hypertension News Columns

“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 ... Read more

July 6, 2020July 6, 2020

My Son Is Taking Over His Own Care Management

Pulmonary Hypertension News 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 ... Read more

June 29, 2020June 30, 2020

I’m Not ‘Lazy,’ I’m Sick

Pulmonary Hypertension News Columns

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 ... Read more

June 29, 2020June 29, 2020

The Three Words That I Find Most Difficult to Say

Pulmonary Hypertension News Columns

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 ... Read more

June 29, 2020June 30, 2020

How to Survive a Medical Move

Pulmonary Hypertension News Columns

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 ... Read more

June 26, 2020June 29, 2020

Learning to Love Myself Is Challenging With Chronic Illness

Pulmonary Hypertension News Columns

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 ... Read more

June 22, 2020June 22, 2020

It’s Important to Be Your Own Health Advocate

Pulmonary Hypertension News Columns

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 ... Read more

June 22, 2020June 22, 2020

How to Become Obsessed with Survival

Pulmonary Hypertension News Columns

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 ... Read more

June 22, 2020June 22, 2020

Celebrating My First Anniversary of Writing ‘Worth the PHight’

Pulmonary Hypertension News Columns

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 ... Read more

June 19, 2020June 19, 2020

As My Life Changes, ‘Recharged and Rewired’ Takes on New Meaning

Pulmonary Hypertension News Columns

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 ... Read more

June 15, 2020June 16, 2020

How COVID-19 Is Shining a Light on Ableism

COVID-19 Columns, Pulmonary Hypertension News Columns

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 ... Read more

June 15, 2020June 15, 2020

Tips for Battling Bronchitis When You Have PH

COVID-19 Columns, Pulmonary Hypertension News Columns

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 ... Read more

June 15, 2020June 15, 2020

Why I Speak For Cullen

Pulmonary Hypertension News Columns

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 ... Read more