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    • #33251
      Jen Cueva
      Keymaster

      Relationships are what our lives revolve around. But relationships can be challenging to build and maintain with PH.

      This week in my column, I share my thoughts o how my relationships have shifted and the challenges of creating and maintaining relationships with PH.

      Please give it a read, and let’s talk about this.

      Do you find that PH makes it challenging to build and maintain relationships?

    • #33295
      Randolph Reynolds
      Participant

      Jen

      All my life I have found that relationships just seem to come about and perhaps that has helped me with them since my life with PAH began.

      I read your experience of moving to a new place and suddenly becoming an outsider.  People who don’t know you will wonder who is this woman with oxygen tanks?  For many reasons they may not approach you.  Breaking into new relationships isn’t as easy but add to that trying to explain PAH to someone is like throwing dice.  You never know what you will come up with.

      However it made me think how fortunate I have been.  Everyone of the friends that I have here knew me before I was diagnosed with PAH.  So when I began pulling an oxygen tank around it was just a new thing about me but I was the same person as before.  The stigma of the disease has melded into more than an acceptance, my friends understand.

      I still get feelings of isolation and wish I could be free just to do what others take for granted. Therefore I cling to the relationships I have built up over the past years and trust that our mutual histories will overcome my limitations.

      I have not seen anyone in this town going places pulling an E size tank.  I still get stares from people but soon I’m just one of the crowd.  I hope that those Californians grow to appreciate you.  You will persevere as you have for all these years.

      Randy

      • #33297
        Colleen Steele
        Keymaster

        @ripple76 your message to @jenc is so powerful and much appreciated!

        When you said, “So when I began pulling an oxygen tank around it was just a new thing about me but I was the same person as before,” it reminded me of Cullen and his best friend, Keenan. I interviewed Keenan a few years ago and he had a lot of wise things to say about being a friend to someone who has PH. Here is the link if you haven’t read it before.
        My Son’s Friendship Was Not Defined By PH

    • #33315
      Jen Cueva
      Keymaster

      Wow, @ripple76, your words of encouragement touched my heart, my PHriend. I’m in tears as your kindness humbles me.

      Your friends are like some of my closest friends that did stick around despite my PH. I found out who my true friends were. Unfortunately, some could not understand or accept my new limitations and life with PH. I was hurt at the time but then later reminded myself that friends come for a season sometimes, and that’s OK.

      Thank you for taking the time to read my column and sharing your thoughts on this topic. So many things change when diagnosed with a rare and chronic disease like PH. Our caregivers struggle with these same changes, too.


      @colleensteele
      , I remember that column but reread it, and I’m grateful that Cullen has such a supportive and empathetic friend. Crazy, at such a young age, he didn’t allow that scare to run him off. This is true friendship; we all need a friend like Keenan.

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