Comorbidity. Just seeing that word makes me cringe. It means having two or more coexisting, and often chronic, health conditions. For many of us in the rare disease community, comorbidity means additional struggles, headaches, and heartaches. Additionally, too often, comorbidities become a lens through which others see us. Before my…
When I was younger, I created what I call my “time capsule.” I made a point of preserving moments that felt beautiful, thrilling, or special by fully engaging all my senses, while also taking note of my emotions. In those fleeting instances, it felt as if I had frozen time.
There’s something truly rewarding about knowing you’ve helped someone. There is no final goal or checklist to accomplish when that happens — it’s an immediate feeling of success and fulfillment! It’s one way that I, along with others in our PH community, know we are doing meaningful work. As…
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 room. So why did I come? After being curled up in my blankets at home for…
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 a social worker came to see me at the hospital a few days after my…
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. My work includes continuing my education and collecting resources for everyone in the rare disease community.
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 it and causing heart failure. The pressure can get intense. This disabled heart of mine is…
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 heart is unable to keep up with its workload and pump blood to adequately meet the…
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 Aug. 15, the day this column was published — is such an apt reminder. Many will…
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 plans with friends is like hitting a bull’s-eye on a dartboard while wearing a blindfold. I…
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 make poor choices. But if we use our failures as opportunities for growth, we claim victory…
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 dreams or experiences and is often filled with intense emotions. I didn’t find a sense of…
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