These Life Hacks Help Me While Living with PH

These Life Hacks Help Me While Living with PH
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We don’t always have a choice about what life throws our way. But our response to challenges is something we can control.

Living with pulmonary hypertension (PH), I don’t always have control over my body. With that lack of control comes frustration. However, I’ve found some coping strategies that improve my quality of life with PH.

A chronic illness like pulmonary hypertension can affect someone in a variety of ways. Daily life with energy-depleting symptoms is taxing. Through trial and error, I have found some hacks that can help make life with PH a little simpler for me.

When discussing energy within the rare disease communities, we often mention that we are out of “spoons.” For those of you unfamiliar with the “spoon theory,” it comes from an essay by Christine Miserandino in which she describes how she explained to a friend her limitations while living with lupus. Like Miserandino, some days I wake up with no spoons. My main objective is to conserve my energy so that I can complete tasks planned for a particular day. But as you all know, even the best-laid plans can change.

While using these life hacks, I have noticed that I tend to have more productive days. Who doesn’t like checking items off their to-do list? Some of my life hacks have proved to be beneficial while I try to balance life with PH. I set alarms on my phone as reminders to take my pills. Currently, I have four pill alarms and a pillbox that I organize each week.

I started cooking dinner as a young tween for my parents and sisters. Cooking for my family has always been an enjoyable experience for me, but the physical demands of PH have forced me to develop some strategies to continue to do that. A small foldable stool in the kitchen helps me when I’m prepping and cutting vegetables. I sometimes buy prewashed and cut fruits and vegetables if I find them at a good price. Another favorite cooking hack is my Instant Pot. This is like your grandmother’s pressure cooker, but much better. I use mine to make soups, beans, chili, and shredded proteins for the week.

My local H-E-B grocer offers free, next-day delivery. Kroger stores also deliver, and they may offer coupons for a free service. If you’re fortunate to be an Amazon Prime member, you can order almost anything from there — if you have a local Whole Foods, look for prime savings.

When I feel up to going out to the store, whether it’s the supermarket or warehouse, I take advantage of the electric carts that are usually available. I haven’t always been so open to using these carts. However, after a few attempts to shop without them, that ended in frustration and my walking out with no groceries. I gave in.

Following are other hacks that help to make my life with PH easier:

  • Dry shampoo. Yes, I went there. I carry a travel-size bottle in my bag, as I don’t have the time or the energy to wash my hair as often as needed.
  • Comfy pajamas. Comfort is essential, and when you wear pajamas more often than street clothes, cuteness can’t hurt either.
  • Sticky notes. Keeping some of these around the house helps me when brain fog kicks in.
  • Naps. A short snooze can be beneficial for me — and those around me.

What life hacks help to make PH life a little easier for you? Please share in the comments below. 

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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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

Jen Cueva is a “ well -seasoned” patient who has been living with pulmonary hypertension (PH) since 2005. Although her favorite place is Southern California, she now lives on the Texas Gulf Coast. She lives with her supportive and comical husband and their Mini Schnauzer named Sasha. Prior to acquiring pulmonary hypertension (PH), she worked in nursing, which she wholeheartedly loved. She enjoys cooking for her family, listening to live music, and sitting by the water. You can also find her visiting local coffee shops with her daughter(as she writes or chills) or at a medley of restaurants. She’s a total foodie! In her weekly column, ”Worth the PHIght ”, she delves into the rollercoaster of emotions that she faces living with PH. She hopes to share her challenges and tips while touching on current topics with other PH patients and their caregivers. Her goal is that by sharing her PH journey, she will inspire and instill hope in others. Together, eventually, we will find a cure for pulmonary hypertension- Never give up hope.
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Jen Cueva is a “ well -seasoned” patient who has been living with pulmonary hypertension (PH) since 2005. Although her favorite place is Southern California, she now lives on the Texas Gulf Coast. She lives with her supportive and comical husband and their Mini Schnauzer named Sasha. Prior to acquiring pulmonary hypertension (PH), she worked in nursing, which she wholeheartedly loved. She enjoys cooking for her family, listening to live music, and sitting by the water. You can also find her visiting local coffee shops with her daughter(as she writes or chills) or at a medley of restaurants. She’s a total foodie! In her weekly column, ”Worth the PHIght ”, she delves into the rollercoaster of emotions that she faces living with PH. She hopes to share her challenges and tips while touching on current topics with other PH patients and their caregivers. Her goal is that by sharing her PH journey, she will inspire and instill hope in others. Together, eventually, we will find a cure for pulmonary hypertension- Never give up hope.
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8 comments

  1. Patricia Trapp says:

    Thanks for sharing your tips. I’m a brand new PHT diagnosis and struggling with fatigue and depression. Everyday is a struggle as you know. I’ll keep reading the newsletter and other materials and try to apply the hints offered

    • Jen Cueva says:

      Hi Patricia, I appreciate you taking the time to read my column. Fatigue and depression are not uncommon amongst those of us with PH. I am happy to hear that you found some comfort in my tips. If you’re interested, we do have a PH forum where others can talk about issues with other PH patients. I’ll share the link here.

    • Jen Cueva says:

      Thank you Dee for reading. If you are newly diagnosed and wnt to talk with others with PH, please feel free to join our PH forums.
      It is a simple log in. I will share the link here.
      Kind regards,
      Jen

  2. Deborah says:

    Thank you Jenn so much for sharing I too am newly diagnosed. I am about five weeks in, but probably closer to four years with symptoms. Thank you for your hacks. I do want to share that laundry is a problem. However, I bought a soft sided foldable wagon. Sounds crazy but it’s much easier to roll that laundry through the house to wash and even the folded laundry to put away, then try to carry it.

    • Jen Cueva says:

      Hi Deborah,
      Thanks for reading. I’m grateful that some of the life hacks are helpful to you. It’s funny that you mention the laundry. For me, bending over to get the laundry in and out of the washer and dryer is tough for me. My husband has elevated the dryer some so that I can get in there. The clothes hamper is also elevated. Your laundry wagon sounds like a great idea.
      Take care and I hope that you’ll continue to read.
      Kind regards,
      Jen

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