“Life is tough, my darling, but so are you.” – Stephanie Bennett-Henry My husband pushed me in my wheelchair through the main hospital entrance. My pulmonary hypertension (PH) medical team wanted me to avoid chaos in the emergency room. I am grateful that he made my health…
“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” – Matthew 6:34 I’m noticing that my pulmonary hypertension symptoms are raging throughout my body. For those who are unaware, stress can exacerbate PH and its symptoms. For…
If I asked you which three words you find most difficult, how would you answer? Some may say, “I love you.“ Others may say, “there’s no cure.” But “I need help” are the three most difficult words for me to say, maybe because I’ve never been one to ask…
As a child, I enjoyed writing. My Moma always reminds me of the “I’m sorry” letters I wrote when I did something wrong. Writing cards and notes and mailing them is something I have always enjoyed. Once my parents divorced, we moved around often. This made it difficult for me.
I attempt to take a deep breath, but tightness squeezes my chest. Pain follows, as if someone is crushing not only my lungs but my ribs, too. I woke up the Friday before Memorial Day to this overwhelming yet familiar scenario. Because of pulmonary hypertension (PH), I also battle…
Have you ever walked in the door and immediately been greeted by your fur baby? If so, you know how good it feels to have been missed — even if you’re greeted with sloppy kisses and a hyperactive bouncy dog. Mine often gets twisted up in my oxygen tubing as…
In life, we often try to control things by trying to predict the future. But no matter how hard we try, we are not in control. There is only one person in charge: God. Living with a rare disease like pulmonary hypertension (PH), I relinquish that control more often…
If you have found yourself standing in a warm shower as tears stream down your face, you are not alone. It is no secret that living with a rare disease like pulmonary hypertension affects one’s mental health. Although I have touched on this topic before, I want to devote this…
When you hear May 5, do you smell warm chips and salsa? Or taste a tangy margarita? Most of us probably think about Cinco de Mayo. No judgment. I, too, typically enjoy Cinco de Mayo by celebrating at a favorite Mexican restaurant. But on May 5, the pulmonary hypertension community…
“I have watched fear change us. I have watched fear ride roughshod over our families, organizations, and communities.” – Brené Brown, “Braving The Wilderness.” In the above quote, lecturer Brené Brown was speaking about fear after 9/11. Lately, we are again learning to live in fear. We are…
I often hear that I’ve changed since my pulmonary hypertension diagnosis. I constantly speculate about whether this might be true, and then repeatedly realize it’s pretty accurate. Surviving every day with a rare and life-threatening disease like PH takes a toll not only on my body, but also my…
Based on recently conducted surveys, we know there is a subset of patients with pulmonary hypertension who are currently not on therapies approved by the U.S. Food and Drug Administration to treat their pulmonary hypertension. There is a wide range of possible reasons.
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