Finding Balance Between Living to the Fullest and Taking Precautions

Finding Balance Between Living to the Fullest and Taking Precautions
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Recently, it seems that all we hear about is the coronavirus. Between that and the cold or flu that many are dealing with, I must take preventive measures. But how many measures can I take while still living a somewhat normal life? I’ve noticed that others tend to go to the extreme with this.

Living with a life-threatening illness like pulmonary hypertension (PH) means that I must take precautions all the time, not only when an outbreak of the newest superbug occurs. Because of PH and my coexisting illnesses, I have a compromised immune system.

Despite this, I want to live my life as “normally” as possible. For me, this may mean that I take extra vitamins. Or the several times a year that I have chronic bronchitis, I take precautionary steps. My medical team provides me with nebulizer treatments (which I stockpile in my pantry) and a backup supply of antibiotics to take at the first sign of bronchitis.

Struggling to maintain my health as much as I can while living my life is complicated. I want to go out and do things with my family and friends, but during a superbug outbreak, part of me wants to hibernate at home. During the typical cold and flu season, I often take these same precautions.

Honestly, I do not want to wear a mask because it makes my breathing more difficult. I want to live my life the way I want and enjoy the days that God gives me. Hibernation is no way to live. “Bad PH days” already cramp my lifestyle. For me, the best solution is to take some precautions while doing all that I can when I feel up to it.

Maybe I have FOMO (fear of missing out) syndrome. In reality, I have missed out on many fun things in my life. It wasn’t always like this, though. About 10 years ago, I was the young lady on the back of a motorcycle donning oxygen. Walking into bars and other hot spots, I would hop off the bike and join the crowd as we jammed to live music. Laughing, singing, and dancing were the norm. Everyone knew me as the girl with oxygen.

Jen and her husband, Manny, prepare for a Sons of Anarchy ride at the Lone Star Rally in Texas in 2012. (Courtesy of Jen Cueva)

Thinking back to those days, I was a little “wild and free.” But it was enjoyable, and I didn’t think as much about the reality of my PH. I hugged everyone and chilled with them, often not thinking about taking the precautions I do now. Hugging is just a huge part of me, and I continue to be a hugger. I took immune-boosting vitamins when I knew that I would be around a large crowd.

This was short-lived once my PH progressed and required a different class of medication. First, my PH team prescribed Orenitram (treprostinil), and then Uptravi (selexipag) when that was approved. These new medications did not mix well with alcohol. Partly because of this and a few horrific trials, I started to slow down.

Today, I take some added precautionary measures. While working, I got a flu shot every year, and now my PH team requires it. They also require me to stay updated on my pneumonia shot. As mentioned, I keep the necessary medications on hand to take as needed. I wash my hands often. I also carry antibacterial gel with me and ask others not to come around if they are sick.

But I try not to let PH and my other illnesses take over my life entirely. So, yes, I go to the grocery store and actually enjoy it. I know most of the workers and chitchat with them. I also go out to eat and shop when I feel up to it. As you can see, I struggle with finding a balance between wanting to protect my compromised immune system while still enjoying life. Life is meant to be lived, and not in hibernation mode. PH won’t hold me down.

Do you struggle with taking precautions to protect yourself while living your life despite PH? 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 is a columnist and forum moderator for PH News Today. Jen worked in nursing before the script changed upon her diagnosis of PH in 2005. Advocating and meeting those with PH has always been an essential part of her life. Her passion is to instill hope and remind others in the PH community that they are not alone. In her weekly column, she delves into the roller coaster of emotions that come along with PH. Jen lives on the Texas Gulf Coast with her husband and mini-schnauzer. Together we PHight stronger.
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Jen is a columnist and forum moderator for PH News Today. Jen worked in nursing before the script changed upon her diagnosis of PH in 2005. Advocating and meeting those with PH has always been an essential part of her life. Her passion is to instill hope and remind others in the PH community that they are not alone. In her weekly column, she delves into the roller coaster of emotions that come along with PH. Jen lives on the Texas Gulf Coast with her husband and mini-schnauzer. Together we PHight stronger.
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6 comments

  1. Jo Ann white says:

    That is how I feel. Need to take sensible precautions but also want to maintain my old lifestyle as much as possible. No hugs, no visits from people who are sick, flu and pneumonia shots, hand wipes, and major grocery deliveries during flu season. But I still shop at fresh market and our Amish farmers market, go out to dinner with friends, and go to ballet, symphony, and theater (in new seats with room for oxygen tank on wheels). Isolating myself in the house is no way to live if I can possibly avoid it.

    • Jen Cueva says:

      Hi Jo-Ann,
      Thank you for reading. I’m happy that you can relate to my story. It’s a difficult balance, certainly. It sounds like you have found that balance and what works for you.

      Grocery delivery is quite helpful, I use that when my PH is giving me a tough time. Otherwise, I enjoy going to the grocery store and farmer’s markets are fun, too.
      Kind regards,
      Jen

  2. James Kindle says:

    Hi everyone , I just live for the day do what I can am not worried if it ends today take it one day at a time enjoy wish everyone the best. I am 63 been dealing with ph 3 yr

    • Jen Cueva says:

      Hi James,
      Thank you for reading my column. So true, we must live for the day.
      I hope that you will continue to read and will find my writings helpful.

      Kind regards,
      Jen

  3. Linda Laver says:

    What wonderful positive inspirational people and thanks for sharing your stories. I am newly diagnosed and of the older generation (70 years young) but I still want to enjoy life and my wonderful grandchildren. I don’t know what to expect from this illness but I have joined the UK PH Group and have been given a lot of information that helps me understand it. I am the sort of person that needs as much information as possible, it is just who I am!! I have other multiple conditions that contribute to my daily life and yes I am definately not mixing or going out as much as used to because of the effects of my other health issues. I can’t get travel insurance and have just had to cancel a holiday that I was really looking forward to but once my tests are completed I am hoping that I can re-book. Does anyone else have problems getting medical cover for holidays?
    Kind Regards.
    Linda

    • Jen Cueva says:

      Hi Linda and thanks for reading. I appreciate your kinds words and support. I love that you describe yourself as “70 years young”. I am sure that you are a joy to your family.

      We have a forum for PH patients and families that you may enjoy. You can also ask your question there, or I can ask for you.

      Kind regards,
      Jen

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