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Thread: just to say I love you

  1. #11
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    I’m back!

    I just needed to take a mini breather after everything that happened. Nothing after the original post should've ever been posted. I’ve been away from this site far too long and am glad to finally be back. After reading this, I just want to say that you are all awesome, and I love everyone here! I don't know where I would be without you or this amazing forum.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

  2. #12
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    Whoopee! So glad to have you back, Rebekah!
    Anne, dx'ed April 2011

  3. #13
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    We are really glad to have you back, we will all have lots of time to catch up. You need to eat and get strong and think positively. Lots of hugs y mucho ánimo, Barbara
    My blog: Animo

  4. #14
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    Hi Rebekah,
    Im glad you are here. I missed you. I was so worried about you.
    I hope that you read what we all wrote to you.
    thanks everybody for your "likes". thanks for being here. thanks for being the way you are.
    I posted that thread and then went to sleep. (it was evening) and then I had a dream. I think the dream was about the forum.
    In my dream Im coming to the hospital, holding RTX with me to get IV. there is a new department there, and on the door it is writen (in hebrew) "wegener" and Im so happy that finally I have a place to treat what I have. it looks so nice there, new and welcoming.
    this is my feelling here. it is weggies home here. warm and welcoming.
    and I even feel as if we speak the same language...
    Last edited by Alysia; 04-25-2013 at 02:40 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.

  5. #15
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    I missed everyone so much too! I wish I could turn the clock back and go back to last week and have kept everyone updated... this is 2013, we should have flying cars and time machines by now right? haha I did read all the nice notes in the thread and in the guestbook. Seeing how everyone worried about me when it wasn't necessary was hard, but it made me realize just how amazing and caring the people in this forum are. There was some good info about comas, but nothing after my original post should have ever been posted. I was just so mad and angry at what happened at the time I wanted it deleted as it should've never gotten to that point.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

  6. #16
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    We still have the time and ability to revisit anything positive that was in that thread, such as info about comas, blood tests, what it might be like to donate or receive a kidney, etc. Deleting the thread was the right thing to do. It is now in the past and we don't have to see it again!
    Last edited by annekat; 04-25-2013 at 03:23 AM.
    Anne, dx'ed April 2011

  7. #17
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    Jasper, Alberta, Canada
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    Wow, it looks like I have missed some significant stuff. Sounds like it's probably a good thing, but I also want to add that I would be a completely different patient and probably in a much worse place had I not found this forum. You guys are like a second family and I've not been on here much lately, so there is a bunch of people who have joined recently that I don't know, and I'm so bummed that the situation is such that more and more people have to join. It means our governments, science and research are not doing enough to get society out of this hole.

    I stumbled on a photo on my Facebook account yesterday that Christi (Lightwarrior) had commented on and I hadn't seen it until just yesterday. I saw it and started to cry, then Hana (my daughter for those who don't know me) saw me and she started to cry, so we had a little cry for a lost warrior who made a difference in so many of our lives and was a friend (amongst so many others) that I had never met in person.

    It's a funny situation but life has a funny way of introducing us to cool people and teaching us cool lessons (sometimes the very hard way)

    I too love everyone on here and think of you often and send you big hugs and healing energy.

    Peace.

    marta

  8. #18
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    I am so glad to hear from you, Rebekah and that you are doing ok. I echo everything everybody says about the people on this forum. I really don't know what any of us would be doing without it. We all have our own personal support at home, but they still don't understand like you all do, about all the thoughts and feelings we constantly have about wegs and what might come up for us in the future. Thanks to each one of you for your kind words, compassion and wisdom,love you all!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  9. #19
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    I agree wholeheartedly about the value of this forum. I ask myself over and over, what would I do without it? It is the one good thing about having Wegener's! And a REALLY good thing, at that!

    Marta, it's probably good you missed that thread. You would have gotten involved and wasted your time with a fake situation set up by a probably mentally ill person. And yes, doesn't it seem like more and more people are being diagnosed and joining the forum? I'm hoping it's not that the numbers are increasing, though they may be, but that there is more awareness of WG and that therefore doctors are more likely to diagnose it instead of passing it off as other things. I'm sure it's not all one thing or the other, and you are right to keep up your good work of raising awareness so that our governments, researchers, etc., will take notice and do something.
    Anne, dx'ed April 2011

  10. #20
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    I am new to the world of wegeners granulomatosis, my girlfriend of a year has had this since she was 24, along with a failed kidney transplant and many trials of different meds. i have been very supportive in her trials and tribulations, my heart goes out to her and anyone else who suffers from this disorder. i love her more than life itself and always will. i am constantly on the look out for as much information on any part of the subject as possible. i want to help as much asi am able too, and then some. if anyone knows where i can find more information on wegners and the drug cytoxan i am all ears. thanks, Brandon.

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