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Thread: pberggren memorial thread

  1. #441
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    Quote Originally Posted by freakyschizogirl View Post
    I remember when Jack died, it hit me straight away and I was crying over the keyboard of my computer, inconsolable.

    Phil being dead just doesn't seem real or possible. I am finding I so hard to believe. Me and Phil didn't always see eye to eye but I know he was a kind soul who was always there for people. I wish he were still alive now, he always seemed to have a positive spin on things.

    Alysia I kinda missed you and Phil falling in love while I was absent from the forum but oh my, did you make a cute couple.
    thank you. I wanted to tell you and the others something:
    Phil had a notebook in which he was writing notes before going to meet his docs. sometimes we prepared the notes together on skype. when I was with him in the batcave and before we drove to his lung doc, we preprared the last list. I also wrote in that notebook notes from the meeting we had with the transplant team.
    Phil's parents allowed me to take this wg-notebook to memory.
    what is heart-warminig in this beautiful notebook, besides his neat beautiful handwriting, if that in each visit to each doctor there are also couple of questions about other weggies. he was so kind and caring. I found question about me and also, Sam, questions about you, about the dillema that you had between the ENT and your wg doc couple of months ago considering your nose.
    he was so amazing. even more then you all knew. the more I got to know him, the more I was amazed from his kindness and caring and courage and more.
    I will post here one page from his wg-notebook.

  2. #442
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    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  3. #443
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    Thanks for posting about Phil's notebook, Alysia. It is nice to learn more about him and the way he managed things, to see his handwriting, and to know that he asked questions about other Weggies' issues in his docs visits. His caring really shows. It is nice that even in your current pain, you can share these things with us and help us get to know him better.
    Anne, dx'ed April 2011

  4. #444
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    Thanks Alysia, I remember him saying he would ask his doc about my predicament.

    I wonder what he would think about my flare now.

    The main thing me and Phil disagreed on was he thought my Wegs was not severe enough to have RTX, clearly Dr Jayne disagreed. I hope Phil saw that my Wegs, altho not as severe as some was rather persistent and resistant to the charms of MTX and Pred.

    I will miss him. He is another one of the greats of the forum who will be deeply missed.
    I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps. Jack

  5. #445
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    Quote Originally Posted by freakyschizogirl View Post
    Thanks Alysia, I remember him saying he would ask his doc about my predicament.

    I wonder what he would think about my flare now.

    The main thing me and Phil disagreed on was he thought my Wegs was not severe enough to have RTX, clearly Dr Jayne disagreed. I hope Phil saw that my Wegs, altho not as severe as some was rather persistent and resistant to the charms of MTX and Pred.

    I will miss him. He is another one of the greats of the forum who will be deeply missed.
    I know that he was pro-rtx allways..... and that he was pro-dr. Jayne...
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  6. #446
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    btw, there are still 2 bottles of rtx in his fridge at the batcave.... if anyone wants I can ask his parents to check if it is not expired yet and to give it.....

    so many things remain in the batcave: the water pipe that he irrigated with, the nebuliser, baking soda, so many stuff for nebulising and meds and vitamins....
    his father told me that they talk with the place where he was going to set his cochlear implants, and they will give his aids, which costs fortune, to a needed one who can't afford to buy it.
    Phil will be happy about it.... he is helping all the time....
    it is so nice to do this charity but it made me cry again....

    he called the aids "ears" .... they were so part of him.... so many memories from him and his "ears".... how I helped him to change batteries every morning in the hospital .... and to find safe place for them every night before I went to sleep.... how he fixed them to hear better after he got back to consciousness 2 days before he passed away.... how he took them off when there was too much noises... and how we knew each other so well, no need of words, no need of ears.... we just communicated without them for hours..... being very happy together just quietly....
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  7. #447
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    and how I was so happy to hug him when I saw him for real first time at the airport, and took them off by mistake....

    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  8. #448
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    a pic I took on skype months ago.... it was such a pleasure to make me sweetie smile.... and I made him smile all the time, the most beautiful smile on earth... now on heaven ....
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  9. #449
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    another cute smile.... and it was after tough day of inserting chest tube number 7

    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  10. #450
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    Hi Alysia,
    How are you doing with the weg's and all this stress?
    I hope you are doing well.
    You and Phil sure shared some great moments and made an awesome couple.

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