Getting through the fog of grief to see clearly on the other side
When pulmonary hypertension (PH) crashed over me, it caused me to mourn the loss of my health, my life’s work, and my dreams. It left me with a crazy mess of grief. When…
The PHlip-side — Jolie Lizana
Jolie Lizana is a Louisiana woman with a strong sense of hospitality and humor. She was diagnosed 12 years ago with systemic sclerosis, pulmonary hypertension, and heart failure. Jolie advocates for invisible, chronic, and rare diseases, and she is a certified legislative advocate. Her perspective as a former sonographer and EMT breaks barriers between doctors and patients. Jolie volunteers with nonprofits and hosts awareness events. Jolie hopes to bring raw truth and vulnerability to her column.
Featured Post
The high cost of time spent managing a chronic illness
My rear end is sore from the gurney, my headache is growing roots thanks to the beaming fluorescent lights, and my chest feels no better than it did when I arrived at the emergency…
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A PH advocate finds hope in new research, anxiety at the airport
As someone living with pulmonary hypertension (PH), I am dedicated to advocating for the needs of the rare disease community. My advocacy efforts span various platforms: patients, healthcare professionals, and the broader public.
Sticky bras are good for the heart
Pulmonary hypertension (PH) can feel like a hand is squeezing my lungs, and my arteries are tentacles of fire. Sometimes I feel like a large iron block is sitting atop my heart, squashing…
How ‘flashing the boobs’ is helping to save women’s lives
Heart disease is the leading cause of death for women in the United States. As pulmonary hypertension (PH) progresses, patients may experience heart failure, a form of heart disease in which the…
Why a day of rest is a victory with pulmonary hypertension
Those of us in rare disease communities have learned one lesson particularly well: We all must listen to our bodies. That’s why a celebration like National Relaxation Day — which happens to be…
The Pandora’s box of making plans and managing friendships with PH
My body allows me to do many things on some days, and not much on others. Because I never know which days will be fair to partly cloudy, making it to appointments and keeping…
My delayed PH diagnosis reveals a lesson in claiming victory over loss
Philosopher George Santayana famously said, “Those who cannot remember the past are condemned to repeat it.” This means that if we don’t learn from our mistakes and the mistakes of others, we may continue to…
Since my pulmonary hypertension diagnosis, I’m tragically blessed
We all want to feel a sense of belonging and connection. The tricky part is learning that we can’t force a genuine connection; it has to find us. Real human connection comes with shared…
