Overwhelmed with managing PH? You’re not alone.
How a columnist copes with the stress of disease management
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.
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.
About the Author
Comments
Larry Stevens
Thank you for writing that, yes I too have those off moments sometimes and worry about how much it also effects those around me and especially those most loved and closest to me, I know it is hard on my wife even when she's says not...I'll stop and think to myself a little phrase she taught me a long time ago, She'd tilt her head, give me one of looks then say, "Is that your biggest problem to-day" So I just shake my head and whisper back, thank you my love. She knows me best.
Jen Cueva
Hi Larry, thanks for taking the time to read through my column. Like you, I, worry about those closest to me, mainly my hubby and daughter. I hate they have to go through this, but know they are my biggest supporters. It sounds like your wife is a loving support for you, too. That's a huge help when life throws us curveballs.
I love that cute saying your wife taught you. You two sound so sweet together. How long have you been married?
If you haven't yet, we would love to have you join us in the PH News forums. We offer a safe place where we can share our experiences and others get it! Below is the link and as a co-moderator, we would love to have you join.
PH News forums
Thanks for taking the time to read my column and share your thoughts. It means the world to me. Take care, my PHriend.
MamaBear007
Thank you for writing this column, Jen! While PTE surgery has given my son's health back, it likely wasn't a permanent cure because the surgeon couldn't remove the most distal clots. I will definitely share this article if the time ever comes. Thank you, again.
Jen Cueva
Hi Mamabear, I'm grateful to hear that you found this column beneficial. There is often a misconception that PTE surgery and transplant offer a "cure" for disease. However, it's important to recognize that both come with their own limitations and regulations.
I'm hopeful that your son won't develop issues with the distal clots in the future, and please feel free to share your thoughts or concerns any time.
Thank you for taking the time to read and engage with my column. I truly appreciate it. My dear friend, please do take care of yourself and your son! It must be so hard to be apart, especially with busy schedules. I can imagine how much you miss seeing him since the move.
Please keep me updated on both of your well-being!
Bonnie
Jen, great article. I too know how life is because I celebrate my second birthdate on 8/11.I too had the PTE surgery and it can only help so much. I was given 6 months to live and beat that. I used to have 2 appointments a week and now I only have a couple a month. What a change. Still on 35 pills a day but I'm still alive and that counts. Jen, I remember when you and I had covid at the same time. That was hell but we both made because of our hubby's and our children. You and In are tough and getting even tougher. Hoping the days get better for you. One thing I won't let PH make me cry. Love you Jen.
Jen Cueva
Hi Bonnie,
We are lucky to have loving and supportive hubbies and kids. Through all the challenges, one thing is certain - our resilience shines through. It's comforting to hear other people's experiences when we're struggling, to remind us we're not alone. Together, we make a great team, battling PH and the monsters it brings.
Thank you for reading my column. Your comment means so much to me. Love you, my sweet PHriend. Take care, and keep PHighting!