Columns

Where My PH Diagnosis and Disability Identity Intersect

I haven’t always identified as disabled, even though I lived with disability long before my initial pulmonary hypertension diagnosis in 2016. Adjusting to life with a chronic illness that affects breathing awakened a connection inside me to disability as part of my identity — one I felt had been…

Turning the Tables on Caregiving

I will turn 50 in October, and I have ignored worsening symptoms alerting me to a possible health concern for many years. I finally decided it was time to face what I was avoiding and schedule a doctor-recommended upper GI endoscopy and colonoscopy. As the anesthesiologist was preparing…

Love Can Make a Broken Heart Feel Strong

I have read that the heart is the hardest working muscle. If you’ve ever seen an echocardiogram of a heart laboring against pulmonary hypertension (PH), you’ll agree. But anyone who doesn’t give the heart credit for being the strongest muscle has never met a grieving mother. In an email…

Always a Mess: Keeping Clean With Chronic Illness

I didn’t truly realize how messy of a person I was until I went to college and spent more than four years living in small spaces with others. Growing up, my room would always become quickly disorganized, but this was typical teenage behavior no different than my older siblings’. Every…

Rewiring My Mind by Focusing on Pride

My mind once seemed wired to focus on parts of me I wish I could change. Most of my life, I struggled to accept my reflection in the mirror. I spent a lot of time hoping for the scars to fade and the fluid retention to dissipate. I tore…

Treatment Cost Worries Make It Harder to Focus on My Health

Living with a chronic illness or rare disease definitely comes with a price tag. There are added expenses related to medical equipment and devices, doctors’ appointments, tests and procedures, and of course, the cost of prescription drugs, which can really pile up month after month. I remember feeling incredibly frustrated…

New Accommodations, Same Destination

The need for adaptation in my life began so quietly I often didn’t notice the accommodations I required. I started dancing at a young age, and at the end of each dance season, we had a big recital with different costumes for each performance. This created a problem when considering…

Celebrating 2 Years of This Column and Working From Home

Let’s celebrate! Come on, y’all, join me. Now, are you curious what we’re celebrating? This week, I celebrate two years of writing my column, “Worth the PHight.” I’ve mentioned before that I started this column to offer hope to the pulmonary hypertension (PH) community. This is still true. And…