Overwhelmed with managing PH? You’re not alone.

Managing life with pulmonary hypertension (PH) and other illnesses can be overwhelming. Juggling appointments, procedures, pharmacy visits, and insurance calls leaves little time to focus on feeling well. Chronic pain, PH symptoms, and medication side effects can also affect my quality of life.

Since I was diagnosed with PH in 2005, I’m fortunate to have celebrated many “bonus” birthdays — milestones I wasn’t sure I’d get to see. But complications from chronic kidney disease have taken a steady toll. As a young woman, mother, nurse, and wife, I was full of life, but now I feel my body slowing down. It’s an unfamiliar and disheartening place.

Living with a rare disease for 18 years has taught me to make it a part of my routine, but managing PH and other conditions is an ever-changing process. During times of emotional turmoil, I rely on better days to remind myself why I continue to PHight.

Sometimes my husband, Manny, comes home after a long day, clueless about what I might’ve been through. He sees the “hot mess” that I am. And I, too, yearn to be the former version of myself that has vanished.

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It’s precisely this feeling of losing control over our body that can be overwhelming and isolating. We forget our body’s physical and emotional weight over time, with it often misfiring when we least expect it.

Last week, I told Manny I was tired of seeing so many doctors. Maybe my primary care provider and PH specialist could handle everything, allowing me to cut down on office visits. Juggling appointments and medical tasks requires so much time and energy, and meeting new specialists feels exhausting. Plus, some doctors simply want to suggest another pill — a Band-Aid for whatever issue I’m experiencing. Even so, I’ll always remember I owe my health to these necessary professionals. They’ve been pivotal in my journey.

How I cope with feeling overwhelmed

I remind myself to slow down and extend grace when I’m unsure how to proceed. Usually, this follows a good cry or some yelling. I tend to distance myself so that I won’t let others down. Life with a progressive illness is challenging, and the repetitive cycle of canceling plans takes a toll. It can be frustrating when others don’t comprehend the physical and mental turmoil within me.

With the help of oxygen, a short walk in the sunshine with our puppy, Zoe, can offer me a mood boost. Catching up with family and friends who may not be near but are always close to my heart is a much-needed break.

I also engage with my community by advocating for others, moderating the Pulmonary Hypertension News Forums, writing my column, and communicating with friends with similar experiences. They remind me that I’m not alone, and I’m grateful for our connection. However, when both parties have chronic health challenges, it can be hard to find a time when we’re both feeling all right and aren’t busy with work or appointments.

Frequently, I enjoy peaceful moments at the beach, burying my feet in the sand as the waves retreat and return. I relish the rush of salty ocean water on my skin and the sunshine’s warmth. These serene moments are essential, helping me to recharge my body and mind.

So as I hear my morning medication alarm, I ponder life’s absurdity. I grab a glass of water, pop the pills, and swallow the bitter truth with each gulp. My health is overwhelming sometimes, but this is where I’m at, and that’s OK.

We’ll keep PHighting together because hope guides us through the darkest tunnels. Are you overwhelmed with managing PH? Let’s face it head-on and keep our sights on the light at the end of each tunnel.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.