*** “Just when we think we figured things out, the universe throws us a curveball. So, we have to improvise. We find happiness in unexpected places. We find ourselves back to the things that matter the most. The universe is funny that way.
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With pulmonary hypertension, I have been through a variety of difficult days, including days when I feel I can’t fight this disease anymore. They are the days that make me question my own physical and mental strength. On these days, I think to myself, “How…
I’ve been quiet in this space for longer than I intended to be. Call it writer’s block or an exceedingly busy work schedule or no particular reason, really. I just didn’t put fingers to the keyboard in a way that produced any writing worthy of sharing with the…
During my senior year of high school, a teacher assigned the task of creating a “bucket list.” I was furious. A term popularized by the 2007 movie of the same name, a bucket list is a list of things one wants to do before dying —…
On Sunday, one of my longest friends with pulmonary hypertension received a heart-lung transplant. I met Camille at the first PH Conference I attended in 2000. I was 6 and she was 10, so it was a big deal that she even talked to me, let alone befriended…
For most of my life, “being brave” meant that I had to be tough. For me, this looked like hiding my true feelings with a smile, fighting tears when experiencing pain, learning to just live with the physical feelings I was experiencing, and complaining only when…
“At least you don’t look sick.” I’ve heard this comment before — meant as a compliment, I’m sure. As if saying “you don’t look sick” is a good thing. As if it makes up for feeling like I got hit over the head…
My sister and I fell asleep in our flannel nightgowns as my mom drove our minivan the 14 winding miles home. Dad was on a work trip, and we’d spent a full day enjoying the treasures of our adoptive grandmother Verna’s home. Not wanting to disturb…
“You shouldn’t be sitting around all day. If you don’t get up and do something, people will think you’re just lazy.” “You shouldn’t use your illness as an excuse to rest and take a break.” “Why can’t you get the…
When asked to help launch the Pulmonary Hypertension News Forums, I was honored, excited … and I felt like a fraud. “I don’t even have PH, anymore!” I reasoned. Surgeons wiped a 16-year-old diagnosis from my record…
“You just have to be patient.” I can’t begin to count how many times I’ve heard this throughout my years of managing chronic illness. Although I have 26 years of experience with doctor’s appointments, testing, surgeries, medications, and the many joys that…
I’ve written before about the importance of community while battling chronic illness, especially rare diseases. The advice and support I’ve received from other patients through online groups and in-person PH conferences have been invaluable to my…
