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    • #30261
      Colleen Steele
      Keymaster

      I don’t know about you but I think of PH as the biggest bully I have ever known. My reaction to it over the years has been more like I’m dealing with a person than a disease. As I mention in my recent column, “Treating PH Like the Bully It Is“, I feel like I can reach into the shadows and shake PH like a rag doll!

      I’m willing to bet I’m not alone! Who else feels like you are always being chased by a bully?

    • #30269
      Jen Cueva
      Keymaster

      Wow, another excellent job, @colleensteele! I have never thought of PH as a person. But it makes sense; PH is a bully. I love the way that you have my thought process kicking in with each column.

      I do think it can be something that, at times, I want to “shake it like. a rag doll”. Of course, other days, I beg it to allow me to breathe or stop sitting on my chest.

      I love how you closed about thinking about what makes us happy and talking about PH with others within these forums.

      I never thought of PH like the Grim Reaper, but I will now. This is exceptionally written. Thank you, Colleen, for giving us all things to think about.

    • #30276
      Jill Upshaw
      Participant

      It is the Grim Reaper for sure. I talk to it on a regular basis and let it know that I want it to let go of me and leave me alone. I talk to my tubing also when it grabs me and tries to pull me back. I guess it is a coping mechanism. Maybe it keeps me from fussing at real people that I love.

      • #30287
        Jen Cueva
        Keymaster

        Hehe, @upshtcx, I love that! I, too, yell at my oxygen tubing when it gets caught on cabinet knobs, and the most recent was I closed it up in the fridge. I need the extra tubing around the house. But, in the kitchen, I almost hang myself all of the time because of that darn tubing!

        Maybe like you, I yell at it instead of like someone else. My hubby probably appreciates that tactic. Hehe

    • #30277
      Colleen Steele
      Keymaster

      Thank you @jenc. It took me a while to realize I was often dealing with PH as if it were a person. I think many of us do that at times without giving it much thought. I agree with @upshtcx that it is a coping mechanism. I know I try not to let my aggravation and emotions out on my loved ones so I have let loose on PH as if it can hear me.

      Have you ever lost it on Christmas lights…it’s kind of like that. LOL!

      • #30288
        Jen Cueva
        Keymaster

        LOL @colleensteele, I, too, have lost it with Christmas lights. I am grateful that Manny had them up for me this last year when I came home from the hospital.

        He does them most often as far as hanging them. My job is to get them all laid out with no kinks, etc. I prefer hanging them, as I yell at them if they tangle or a bulb blows.

        Too funny @upshtcx, I am laughing so hard at this vision. I see the lights all in the boxes waiting for you to get them out and nothing. I am happy to know that someone else put them up for you, too.

        These all are certainly coping mechanisms for sure.

    • #30281
      Jill Upshaw
      Participant

      I did not do the Christmas lights this past year. I got them out and they set there. I talked to them also but they would just not listen. Then someone else put them up. I just cannot get on a ladder anymore.

    • #30296
      Colleen Steele
      Keymaster

      @jenc and @upshtcx I’ve heard it said you can tell a lot about a person by the way they deal with tangled Christmas lights. All I can say is, “I will never let anyone watch me handle Christmas lights!”. I can handle the string lights but there are these blue snowflake ones I love and insist on adding every year, but no matter how I pack them, they hook onto each other, get tangled and are a nightmare to deal with. Let’s just say they wake my Irish temper every December. LOL!

    • #30297
      Jill Upshaw
      Participant

      You made me laugh. I have one of those Irish tempers myself. If I were not white-headed you would surely see the red in my hair. When I worked as a nurse, if I got mad, my ears would get bright red. Everyone noticed it and if my ears were red, things got quiet. I did not have to say a word……

    • #30326
      V.R. Peterson
      Participant

      Thank you, @colleensteele, for another excellent column! I never thought of PH as a person, but that’s exactly how I saw it — a bully to beat down until my son could recover. For the longest time, my son dealt passively with PH — merely doing what the doctor said, but he didn’t see the point in fighting when the doctor was happy with his “normal” rate of decline. After all, the doctor was the “expert.” All that changed when my son fell in love with a nursing student who wasn’t about to sit still while this bully tried to beat down the love of her life. She found a new doctor for him, who provided a new diagnoses (still PH, but the kind that is caused by clots), so the treatment was different than what his first doctor was willing to do. Now my son is up and at ’em. Together, he and his (now) wife are beating down the bully.

      • #30329
        Colleen Steele
        Keymaster

        @mamabear007 it makes me feel good when someone relates to what I write about. But I am sorry that you, your son and his wife have gone through what Cullen and I have. Really, I can’t think of a better way to describe PH than as a bully.

        Your daughter-in-law sounds like an amazing, compassionate and intelligent woman. I’m so happy for your son that he found his special someone. I can imagine how much she means to you as well, having someone who loves and cares for your son to the extent that she does.

        It’s always nice to hear from you. Have a nice weekend!

      • #31296
        Janet
        Participant

        Oh, that was a cute story! Hope your son and daughter-in-law are doing well! And thank you @Colleen for bringing up this column, even I couldn’t relate to PH as a person either.

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