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  • PH and Halloween: Do You Feel Like You’re Wearing A Costume Year-Round?

    Posted by Colleen on October 26, 2022 at 11:13 am

    Any plans for Halloween? Will you be wearing a costume? Do you feel like you’re wearing one year-round due to PH?

    What I mean by that is that year-round you do your best to mask how sick PH has you looking and feeling.

    A picture of my son at a hospital Halloween party when he was recovering from his transplant in 2014, inspired my recent column. I used it to give people a comical visual, but one that gets the point across, of what they don’t see and haven’t seen that Cullen has dealt with from PH to life post-transplant.

    Take a moment to read the column then share what “Names” you would give the cavemen in the picture and why.

    Column: My Son Has Been Followed From PH to Heart-lung Transplant to Today

    jen-cueva replied 11 months ago 2 Members · 3 Replies
  • 3 Replies
  • jen-cueva

    October 27, 2022 at 1:04 pm

    Wow, what a creative piece and at the perfect time for Halloween, @colleensteele! Your creativity blows me away, my friend.

    The names you give each caveman are genius and so fitting. I LOVE that pic with Dr. Cullen because he would make an excellent doctor. For such a young age, he is a compliant advocate for himself.

    I would say anxiety would surely be one caveman, maybe the larger. Fatigue, perhaps, and grace should be there with hope and Mr. SOB.

    I’m def guilty of wearing a “mask” when I am out in public. I think that is why I always want to be something fun, scary, or sexy on Halloween, LOL. Everyone is wearing masks, so we blend in, right?

    I can’t tell you how much I love this one; WTG, FWW!Happy Halloween y’all!

    • Colleen

      October 28, 2022 at 10:15 pm

      Thank you @jen-c I had this column in mind last year but for some reason didn’t write it. Had to get Cullen’s approval first, maybe that’s why. LOL!

      I love this picture and the more kept looking at the more I was somehow finding deep meaning in it. My brain is weird.

      When you mentioned that you would name one SOB it made me laugh. I remember the first time I wrote SOB on something when Cullen had PH and Brian started laughing. He um, he associated those letters with different words. So when you are talking about naming a caveman that I think it could mean the one because it cause the other…no what I mean? LOL!

      • jen-cueva

        October 31, 2022 at 1:29 pm

        LOL, @colleensteele, yes, SOB could mean either. That’s funny how Brian reacted. I recall tees a late PHriend made one year. It was “I’m a little SOB.” They were black with periwinkle words, and SOB was done in a much larger font text.

        Some of us wore them one year to the Houston PH Conference and during November for PH awareness. It became too big and severely worn. I wish I still had it since Ellen created them.

        I think we wear masks all year, so we want to have fun on Halloween. I anyone dressing up? I am a black crow this year. I wore it on a work Zoom Halloween call last week. The face mask is partial, but it was hot, so I can’t wear it for long periods.

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