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Thread: pberggren memorial thread

  1. #461
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    When my sweetie was in the ICU, one of our previous roomates, a writer, wrote short story about him. She allowed me to post it. Here it is:

    “You are my sunshine, my only sunshine, You make me happy when skies are grey....”
    I was sitting on my hospital bed, curtains fully closed around me, when I heard this song being sung in a low, raspy voice that I assumed came from an older gentleman.
    I felt so tired. Just how sick was I? What ward was this, anyway? Why on earth did I need an ambulance to bring me to Calgary? I have work to do, I thought. I just don’t have time for this.
    Then I heard the gentle, raspy voice singing this very old, sweet song that my parents, and probably my grandparents, used to sing. I said, to whoever sat on the other side of the curtain: “That was beautiful". The voice answered: “She came all the way from Israel for me. It’s still a dream to me.” I didn’t say any more, I couldn’t, I just sat there crying.
    A few hours later, unable to sleep, the prednisone the doctor prescribed for me did its magical work. It was described to me as the “wonderful, horrible” drug during my stay, a corticosteroid medicine often used to effectively treat inflammatory disease, but with a list of possible side effects that reads like a horror story. Overnight I felt myself growing stronger, more alert; by morning I could breathe again.
    That morning I felt up to meeting my neighbors. I said good morning to Ted, the cranky old guy across from me who had had a pretty rough night. Then I turned to meet Betty, the older woman in the bed next to me who seemed to have a constant stream of family visiting, and whose husband I had assumed to be the singer. I said again that it had been beautiful to hear, but she had no memory of hearing a song; she had probably been asleep.
    A younger couple was sitting in the far corner of the room by the fourth bed, and I turned to look at them. The moment I saw a beautiful young dark-haired woman smiling up at me, I said, “It was you.” She was the woman who had come from Israel. A young man sat next to her, also smiling, and the various tubes and machines to which he was attached made me understand why the voice I heard had seemed older.
    This is how I met Alysia and Phil. Over the next few days I learned a few things about these two. First and foremost, I learned how very much in love they are. Alysia and Phil both have Wegener's Granulomatosis, which causes inflammation of the blood vessels, which in turn restricts blood flow to various organs. It often affects the lungs and upper respiratory tract and/or the kidneys, but it can affect other organs as well. There is a world-wide network of “Weggies” who connect online, and this is how Alysia and Phil first met.
    Alysia is a beauty, a woman in her early forties who could be thirty. She is one of the most open-hearted people I have ever met, and in action, a force of nature.... I watched over the course of three days how she would immediately assess and discuss any changes in Phil’s condition with him, and if outside help was needed, she would go out into the pulmonary ward to find the person she needed to provide that help. She sat with him throughout the day, accompanied him on walks, and sat again with him into the wee hours of the night. she would wander back to her room only to catch a few hours of sleep at the end of each day.
    Phil is, quite simply, the bravest soul I have ever encountered. This thirty-something, easy-going guy is known to friends as “the Batman” for his courage and strength. He is gentle, good-humored, extremely knowledgeable about his condition, and grateful for the care he receives from everyone – doctors, nurses, family, friends, and of course his great love, Alysia. When Phil was being wheeled out of the room to have a larger tube inserted into a collapsing lung, and the tears started welling up for me again, he grabbed my hand and was the one to put me at ease. He said it was going to be OK. And it was.
    I’m not going to pretend to know much about Phil’s condition. I had a good chat with his Dad, and what I do know is that it has been a battle hard-fought, an emotional one and an expensive one as well; Medicare just doesn’t cover all the costs associated with dealing with this condition. Phil’s family come from Swift Current and are happy to do whatever they can to help. The love and admiration are obvious; they know what a remarkable man he is. As part of Phil and Alysia’s community on facebook now, I see how that love and admiration has expanded. These brave people move and inspire so many.
    So, what does one do in the face of all this love and courage?
    I still wanted to vacate my much-needed hospital bed, I still wanted to get home to my own loved ones. But Alysia and Phil had catapulted me out of myself for long periods of my hospital stay, and something significant had shifted in my thinking. It just wasn’t about me any more.
    Phil's challenges over the past weeks have been many, but the strength this man has exhibited in beating the odds has been extraordinary. He has a rock-solid sense of faith, and a world-wide community continues to pray and root for him....
    I was sad to leave my new friends, sad for them…
    Sad because the romantic and the artist in me wanted to write an epic ending to this amazing love story.
    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.

  2. #462
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    That was beautiful, Alysia. Thanks so much for sharing it. I'm glad you are still in touch with this woman, a new friend, who is a wonderful writer. She really conveyed what it was like to be there.
    Anne, dx'ed April 2011

  3. #463
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    What a beautiful gift you have shared in your grief & pain
    Thank you & god speed xx


    Sent from my iPad using Tapatalk

  4. #464
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    I talk to my sweetie in my mind and I write to him many letters. here is one:


    My sweet beautiful Phil,

    Tomorrow it will be two months since heaven is more heavenly then ever….
    Since my sunshine was taken away…

    I miss you all the time, sweetie, in every breath that I take, with every beat of my heart, endless longing, endless tears….
    The wounded void inside my soul is just getting bigger, bleeding, impossible to heal,
    If you were here, you would have say that all I need for it is Dr. Phil,
    I am sure he could have healed it,
    only him, the first, the one and the only….

    So many memories are running in my mind all the time:
    some memories are a little bit comforting: memories of the joyful times we shared, of your sweet love and caring, and those memories making me feel so blessed and grateful to you and to God…
    other memories of the terrible suffering that you have being through, making me cry even harder, so many pains, so much agony and dread, and how bravely you fought, how heart breaking it was to see you through all this, how much I tried to fight for you but I couldn’t save you…

    but you are saved after all. I remember that you said that your hope is to get to heaven.
    So, my beautiful sweetie, you've got it.
    I guess you have a lot of work to do, so many weggies around still need you very much, maybe now you can help them even more then before…

    and I need you. so so so much.
    and I love you.
    to eternity.
    and beyond.
    Forever yours.
    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.

  5. #465
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    and a pic with me. I usually post pics with me inside my profile but in this one its just a bit of me.

    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. #466
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    i dont remember if I posted this pic or not, one of my fav: its from the first weeks in the hospital. my sweetie is reading something in his computer. maybe even the forum. the forum was the first thing that he usually opened when he was openning his computer.

    Last edited by Alysia; 12-02-2014 at 06:03 AM.
    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. #467
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    Thanks for sharing your beautiful words and pictures, Alysia. We all miss Phil, and there is a big void on this forum. But nothing quite as painful as what you and Phil's family are still feeling and will for the rest of your lives. Time may take the sharp edge off it and allow you to move on in your lives. But the pain will not vanish, nor will the joyful memories. He will be with you always, and none of us will ever forget him.
    Anne, dx'ed April 2011

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    Hi Alysia,
    Thanks again for sharing the pics.
    Did u ever find out what the normal protocol should have been in Phil's case for treatment?
    I hope you are feeling better.

  9. #469
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    Quote Originally Posted by annekat View Post
    Thanks for sharing your beautiful words and pictures, Alysia. We all miss Phil, and there is a big void on this forum. But nothing quite as painful as what you and Phil's family are still feeling and will for the rest of your lives. Time may take the sharp edge off it and allow you to move on in your lives. But the pain will not vanish, nor will the joyful memories. He will be with you always, and none of us will ever forget him.
    Thank you Anne from the bottom of my heart. your support means a lot to me.
    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. #470
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    Quote Originally Posted by mrtmeo View Post
    Hi Alysia,
    Thanks again for sharing the pics.
    Did u ever find out what the normal protocol should have been in Phil's case for treatment?
    I hope you are feeling better.
    I gave all my concerns to the lady from the hospital and they are going to investigate all the details. it sounds serious enough. she will ask for an inestigation in the pulmonary unit, the ICU and the ER. some of the fatal mistakes started already in the ER when they put him on the Fentanyl and insert wrong chest tube to the wrong spot. I guess it will take some time untill we will hear from them. I hope it will be decent and can help to save other patients lives.

    I guess he is not the only one who passed away because of malpractice.

    In fact, I remember that when we were in the ICU, every 2 days or so, someone passed away there. it was terrible. some families were screaming in their agony. we were mute. I am crashing again and again when I remember his last hours.

    as for me, thanks for asking. I appriciate your caring. it is not obvious, especially since you dont know me and Phil for long time.
    to be honest, I don’t feel better as the time goes, just worse. I called Phil "my oxygen man" and as the time goes without my oxygen man I am becoming more and more SOB
    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.

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