I’ve come out a few times in my life. I came out regarding my sexuality as a member of the LGBTQ community. I’ve also come out as a disabled and chronically ill individual and a member of the pulmonary hypertension (PH) community. Coming out is a deeply personal experience.
For the past two-plus years, I’ve had to be alone because of COVID-19 for every hospital appointment for my idiopathic pulmonary arterial hypertension (PAH). A year and a half ago, I began a new relationship — so until very recently, my partner had never been to an appointment with…
As I searched for a new primary care physician (PCP) in March, I learned that finding my new healthcare team after relocating across the country would prove challenging. The first potential candidate spent three hours going over my medical background with me, only to inform me that my health…
Pulmonary hypertension (PH) patients use several analogies to describe what it feels like to live with the illness each day. One example is that it’s akin to breathing the air at the top of Mount Everest. Another is that the exhaustion makes us feel like we’re constantly running a marathon.
When somebody asked me how I was feeling a few weeks ago, I responded, “Well, I feel like Stretch Armstrong being pulled in too many directions.” Do you remember the action figure toy Stretch Armstrong? You might need to stretch your memory back to your childhood to visualize this…
After four years of living with pulmonary hypertension (PH), I’ve learned that there are good doctors, bad doctors, and doctors who fall somewhere in between. I’m lucky to have had mostly positive experiences, but the reality is that doctors who specialize in treating physical illnesses may not always be…
A friend recently emailed me an old list of winners of “The Washington Post Mensa Invitational” that has been circulating the web. According to the rules, participants must take any word from the dictionary, alter it by adding, subtracting, or changing one letter, and then supply a new definition.
Life after a pulmonary hypertension (PH) diagnosis is stressful. As a Type A personality, I’ve often defined my worth by my productivity. But since my PH diagnosis, I am now working to prioritize my health. We live in a society that praises productivity. Hustle culture is encouraged across social…
What is baggage? According to Merriam-Webster, it’s one of three things: suitcases, transportable equipment, or intangible things such as feelings and circumstances that get in the way. What kind of baggage do people living with pulmonary hypertension (PH) often take everywhere they go? The answer: all of it! In…
I often wonder what would have happened had I been born at an earlier time. If my life had taken form even a decade earlier, my story would have looked much different. Had I been a child living with pulmonary hypertension (PH) in the early 20th century or before,…
They say pictures are worth a thousand words, but sometimes they can be a one-sided conversation. Some photographers tell better stories, but it’s usually up to the observer to gather hints from the picture to understand what’s going on. Smiling people must be happy. Crying people must be sad.
My husband, Manny, and I celebrated our 30th wedding anniversary in March. If you know anything about my pulmonary hypertension (PH) journey, you know that 17 years have been with PH. That means that Manny has shared me with PH for over half of our marriage. Although I’m grateful…
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