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    • #32622
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you all are enjoying the holiday season.

      Today is our first community Zoom social. This will take place at 4:00 pm EST, and all forum members are welcome to join. Here is the meeting linkSimply click on the link at the designated time and a host will let you in.

      Colleen and Jen will lead the meeting. It’ll be an informal, meet-and-greet session. Please post here if you have any issues joining.

      See you then!

    • #32640
      Jen Cueva
      Keymaster

      Good morning; I hope that everyone had a lovely Thanksgiving weekend. Can you believe that the holiday season has now begun?

      I am so excited for the Zoom social in a few hours. Several of you mentioned that you are interested, so tagging y’all here. But I am hopeful that several others will hop on and join us on our first Zoom social meet-up.

      See you there. @tervo, @mamabear007, @mknevada, @mainegal, @vanessavaile, and @wheeldog. Others who may have missed the announcement, please come and join the conversation.

      Thanks, @kevin-schaefer, for the link and reminder.

      • #32644
        Sue Collin
        Participant

        Just sawthe link in a post on this site! Thx…

    • #32642
      Colleen Steele
      Keymaster

      Thank you @kevin-schaefer for supporting us through our first PH News Zoom social meet-up. I hope everyone is looking forward to this as much as I am. It will be a pleasure getting to see forum members faces and hear their voices.

    • #32647
      Jen Cueva
      Keymaster

      What an incredible opportunity we had yesterday with the Zoom social! It was so lovely to see your faces and connect you with your names. Thank you @vanessavaile, @scollin, @mainegal, @tervo, @wheeldog & Mary Ellen, and @mknevada for joining us.

      The conversations were compassionate and informative. We covered a variety of topics, but here’s a small recap for those who missed it.

      * Brief introductions
      * Resting when your body needs it is OK.
      * Newly diagnosed struggles, including the stages of grief
      * You are not alone; we understand.
      * Hope

      “We must be willing to let go of the life we planned so as to have the life that is waiting for us.” -Joseph Campbell

      Each day your love and support fill my heart. But yesterday, watching the support you all offered one another, my heart was overflowing.

      I hope that each of you enjoyed the call as much as we did. What takeaways do you have from the Zoom social?

      Thanks to each of you again.

    • #32652
      Jen Cueva
      Keymaster

      Thank you so much for your kind words, @scollin. It was such a pleasure to host this event and see all of your smiling faces. I am sharing your comment here since you added it, not here on this topic. I want to be sure that others can also view your comments.

      Sue commented, “Hi Jen, Colleen, and everyone, thank you as well for hosting the meeting for all of us. I agree with everything you wrote Jen and it is amazing that even though we all belong to a club we would rather not have a membership in, the support is amazing. In varying degrees, we have walked in each other’s shoes – so it helps as we try to share our experiences and relate them to someone else’s concerns. I meant what I said regarding taking every day as little or big wins. How we measure our lives moving forward once receiving a diagnosis, or your loved one receiving one, does become different, doesn’t it? For me, it doesn’t mean it’s better or worse, but perhaps there are different goal posts as well as different ideas on what brings us joy on a day-to-day basis. As one of the attendees said on the call, after a diagnosis like this it does take some time to feel like yourself again, or maybe a new self, so give yourself some Grace and hopefully others will as well. Wishing you all a wonderful holiday season, whatever you celebrate. If I can help in any weigh based on my experiences as a caregiver (and as a fellow rare disease person), I am happy to. Again – thanks for putting this together and I hope at the next meeting I will be able to stay on more of the call! Best, Sue

      Sue, you had some excellent points to share with us all. As a caregiver a rare disease patient, yourself, you are a superstar!

      I love the goalposts and that keeping in mind that this may change daily. I often have to step back and remind myself to offer myself the same grace I provide to others. As a nurse/caregiver before PH, I was always on the other side. Boy. have the tables flipped. But PH has taught me so much about life that I would not have known without it. Plus, meeting each of you has been one of the best parts of my PH journey.

      I wish you a wonderful holiday season, too. I hope that you will contribute any time. Your inputs are beneficial for us all. Thank you for taking the time to join us.

    • #32663
      Sally Hoffman
      Participant

      Hi Colleen and Jen,

      Thank you so much for hosting this event, as well as all the other work you do for all of us.  I’m sure I speak for the others as well as myself when I say knowing you are there makes this easier for all of us.

      Yesterday was a treat.  I hope we can do it again.

       

       

      • #32666
        Jen Cueva
        Keymaster

        Thank you so much, @mainegal, for such kind words. I know that I speak for Colleen, too; we love our PHamily here. It is such a pleasure to see that you find the PH forums beneficial.

        It’s for the incredible people like yourself that the forums are successful. Our goal is to educate, support, and empower those affected by PH.

        The Zoom Meet-up was a huge success, and I thoroughly enjoyed seeing you all live.

        Have a great rest of your week, Sally.

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