“The flower that blooms in adversity is the most rare and beautiful of all.” — Disney’s “Mulan” Being diagnosed with pulmonary hypertension (PH) is a daunting experience, like stepping into uncharted territory without a map. Unlike more common conditions, there’s no simple guidebook for navigating this rare disease.
At the start of the month, I embarked once again on something called the “Inktober” challenge. Created by artist Jake Parker, Inktober invites participants to make one piece of art per day during the 31 days of October. I’ve written previously about why I like to participate in…
Living with a rare or chronic disease is never easy, as it creates many emotional, financial, physical, and social challenges. One difficult aspect is learning that a particular condition has progressed. How are we supposed to cope with news that our health is getting worse? I face this unfortunate…
I grew up in Minnesota, the “Land of 10,000 Lakes.” In fact, my childhood home was located on one of the largest lakes in the state. The summers in our lake town centered on water activities, from tubing behind a boat to deep dives off the dock. Being in the…
In August, I had the amazing opportunity to attend the Pulmonary Hypertension Association’s (PHA) International PH Conference in Indianapolis. Meeting newly diagnosed patients and caregivers was a vibrant experience. For many, it was their first time attending such an event, and the energy was contagious. Even the…
Companionship and physical intimacy are universal needs that play an important physical, psychological, emotional, and social role in our lives. But living with a rare condition like pulmonary hypertension (PH) can complicate matters. Intimacy often becomes secondary when I am exhausted, in pain, or short of breath —…
The night before my 15th birthday, my mom looked at me and took a moment. Then with love and a bit of bluntness, she said, “Every year is a gift.” It could’ve been a general statement regarding the fragility of life, but I knew better. Instead, it was her…
Fear and anxiety are often among the first emotions we experience after being diagnosed with pulmonary hypertension (PH) or other rare and complex diseases. Recently, my therapist asked me, “Did you know that naming your fears is the first step in preventing them from controlling your mind?” Despite having…
In 2002, three years after my pulmonary hypertension (PH) diagnosis, my family and I made our way to the Pulmonary Hypertension Association’s (PHA) International PH Conference. I have no memories of this gathering, which was the first we’d attended, but it soon became a treasured part of…
Traveling with a rare disease such as pulmonary hypertension (PH) isn’t just about booking flights and hotels; it’s an adventure full of challenges! Once the plans are set, the actual logistics begin. Ensuring that I have all my treatments, preparing for possible emergencies, and navigating the complexities…
The pain caused my right knee to seize with every step. As I moved through the Indianapolis hotel room that morning, the day’s busy schedule simmering in the back of my mind, I knew I had to listen to my body and change my plans, so I ordered a car…
One day, when I was 15, I tagged along with my cousin and her partner to run a few errands. In the car, Ben Howard, an artist I’d never heard of, played on the CD player. Two songs later, I was hooked. I’d never heard music like his. When we…
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