In a recent column, I shared something I’d been too stubborn to say before: Pushing through fatigue with pulmonary hypertension (PH) almost always costs me more than it gives. The harder I push, the harder I crash. After that column, several readers reached out to say they sometimes…
Worth the PHight - a Column by Jen Cueva
Living with a rare disease like pulmonary hypertension (PH) brings sudden, overwhelming changes. If you or a loved one recently received a diagnosis, you likely know the intense emotional weight that follows. Fear, stress, and anxiety frequently accompany the physical symptoms in those early days. Because May…
You wake up exhausted. A long night of chest pains and other pulmonary hypertension (PH) symptoms meant you barely got any sleep. Work and daily tasks take monumental effort, or they just don’t happen at all. By the afternoon, frustration sets in. You feel behind and worry about what…
Driving to a doctor’s appointment recently, I pulled up to a red light, where a bumper sticker on a nearby car caught my eye. Framed by purple hearts, it read: “A high pain level day is also a low stupidity, low tolerance day.” As someone managing chronic pain due…
Unless you’ve been hiding under a rock lately, you’ve probably noticed how astronomical the cost of living has become. I’m talking about the basics: keeping a roof over our heads and food on the table, and securing the everyday necessities we all need to get through the day. Honestly,…
If you’re looking for March Madness stories, you won’t find them here. But if you want to talk about food, now that’s my jam! I grew up in the South, where food was more than just nourishment; it was our love language. From backyard barbecues to Sunday fried chicken dinners…
A few weeks ago, a close friend who also manages a rare disease asked for my thoughts on artificial intelligence (AI) in healthcare. She sounded anxious — AI was suddenly appearing in her medical appointments, and she wasn’t sure what to make of it. This issue has actually been on…
If you’ve ever felt like your body has a built-in weather app that predicts cold fronts with an extra side of aches, you’re not alone. Chronic pain is a relentless companion for many, and for those of us in the pulmonary hypertension (PH) community, it can feel like…
For many of us, the new year doesn’t bring hope or promise. Instead, it arrives with a heavy weight, filled with uncertainties that feel more threatening than exciting. We worry about declining health, medical bills burdening our families, and the persistent fear that insurance companies will deny us the…
Just as life seemed to be moving smoothly for me and a new treatment was showing promise, I unexpectedly found myself “on vacation” at my local hospital. For those of us navigating the complicated world of chronic and rare illnesses, these unplanned hospitalizations are sometimes inevitable. Living with a rare…
Before I was diagnosed with pulmonary hypertension (PH), my life moved at full speed. I worked full time as a hospice care nurse, a job that was both emotionally demanding and deeply fulfilling. I was an active wife and mom, constantly on the go. Many of my mornings started…
If you saw my husband, Manny, on the street, you might think he looks angry or even a little intimidating. With his love for Harleys, T-shirts, and plaid, he fits the biker persona well. But what you can’t see is the immense heart of the man who has been my…
