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  • Let’s Talk About The Gift Of Time

    Posted by Colleen on December 16, 2022 at 1:38 pm

    How do you make time for family, friends and PH when life places many other responsibilities on you?

    PH News columnist, @mike-naple, wrote a thought-provoking column this week, “They Say the Gift of Time Is Precious, so What’s a PHighter to Do?

    In it he shares his thoughts and experiences about making time in his life for a rare disease like PH. He questions and shares his opinion about whether a “life-life balance” can exist.

    But in keeping with the Christmas season, he talks about time as a gift.

    “Making more time often requires hard choices, which is why it can feel like such a wonderful gift.”

    Mike closes with, “I know it’s on my holiday wish list. Is it on yours?”

    So is time on your wish list and if it’s gifted to you, how will you spend it?

    jen-cueva replied 9 months, 1 week ago 4 Members · 7 Replies
  • 7 Replies
  • jen-cueva

    December 20, 2022 at 2:05 pm

    Wow, what an incredible piece was written by @mike-naple! I enjoyed reading this one, and it now deepens my thoughts.

    Time spent making memories with my family is on my wish list this year! That and eventually a cure for PH.

    Thanks for sharing this one, @colleensteele. I hadn’t had the chance to read it yet. @mike-naple, will you be coming to San Diego this year?

  • mike-naple

    December 20, 2022 at 5:39 pm

    Thanks for sharing my column! I am grateful that I will get to spend time with my family this holiday season. I also need to find some space for recharging and further reflection during the break from work. PH totally turned the tables on me, yet I still feel like I need to be so much so many different people that time disappears into thin air. As we look ahead to 2023, I intend to reallocate the things and people I make space for, thus trying create more time. Like catching lightning in a bottle.

    Jen, I will not be in San Diego for Christmas this year. More on that in a column that will run between Christmas and New Year’s Day. Happy holidays, y’all!

    • jen-cueva

      December 21, 2022 at 11:49 am

      Hi @mike-naple, like you, I will be taking time to relax and refresh and spend time with family.

      When you figure out how to catch that lightning, let me know.

      Aww shucks, well, happy that you will enjoy family time. I look forward to reading your next column. You certainly have a way with words, my PHriend.

      Happy holidays!

  • Colleen

    December 22, 2022 at 10:25 am

    @mike-naple I think it’s impossible to be everything to everyone when your healthy, let alone when you are living with a serious disease like PH. I wish you the best as you try to get through the holidays focused on what and who matters most. I am doing the same. I’m doing the bare minimum this season and minus the guilt pangs I sometimes feel, I noticed I calmer, appreciative and focused on my loved ones than when I’m rushing around trying to make everything “perfect”.

    Merry Christmas and Happy New Year!

    • jen-cueva

      December 22, 2022 at 1:59 pm

      Well said, @colleensteele! I am trying to relax a bit more during the holidays. Yes, it certainly allows for more peacefulness and less stress.

      Please take time with all on your plate for yourself! Too often, our extraordinary caregivers are the last to rest and relax. You deserve it.

  • jill-upshaw

    December 22, 2022 at 2:22 pm

    I started Christmas in October – no joke. I had things I really wanted and needed to get done and I am so slow these days. Now here it is 3 days before Christmas and everything is done and my stress level was actually better. I just slowly moved down my list. I don’t get out much anymore. Hope everyone has a Merry Christmas and a Happy New Year. I wish everyone the best.

    • jen-cueva

      December 28, 2022 at 3:18 pm

      Hi @upshtcx, I love that you had a plan to help alleviate the added stress that the holidays can bring us. It’s even more so stressful when we are fighting extreme fatigue.

      It’s great to see your post. I’ve decided to scale down the things I do at Christmas. But I do often get an early start. But usually sometime in November. I love that you could enjoy the holidays with your loved ones more after tackling your to-do list slowly. Kudos to you, and I hope you have a blessed and healthy new year.

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