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Thread: just to say I love you

  1. #21
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    Welcome to the group Brandon,

    We have many parents, partners and other loved ones on this forum to try and gain knowledge of this crazy disease.

    Anything you are looking for, you can find in the search engine.

    In the little box, type cytoxan or CTX and you will find many different threads talking about it.
    The same goes for any one of the medications that your gf may be taking, or even type kidney and see whats going on there.

    I hope we can help you and your gf - all you need to do is ask.

    Glad you found us.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  2. #22
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    Welcome, Brandon. Michelle pretty much said it all. In your time on here, you'll find there's a lot of variation in the disease, symptoms vary in location throughout the body and in severity from one person to another. I was on cytoxan and it did a good job of decreasing my worst symptoms in a couple of months time to where I could go out in the world and function again. But it does take time for most people to go into remission, if they are going to. We'd be glad to hear more about your girlfriend's WG experience and we'd love to hear from her, too. If she isn't up to it, we understand. Keep us posted on how she is doing and feel free to ask us specific questions about the disease or the treatments. Many on here are quite knowledgeable.
    Anne, dx'ed April 2011

  3. #23
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    Hi Brandon,

    Anne and Michelle said some good information. I'm sorry you had to find us, but this is a family of very supportive and knowledgeable people and there's a ton of great information that can be found throughout this forum. I'm sorry to hear about all the trouble she is having... I just had a kidney transplant in December but can't imagine what she's going through. I hope they can find the right treatment for her, so she can feel better soon.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

  4. #24
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    Hi Brandon.
    welcome to the best forum in the world.
    maybe you should open a new thread because in this thread you can be missed.
    eventhough it is nice that you introduce yourself under the title of love. this is love.
    I dont know what is more difficult: to have WG or to take care of someone having WG.
    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. #25
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    Quote Originally Posted by marta View Post
    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

    I also have been gone to long and probably would have missed it ether way but i really value that everyone hear is so patient and willing to explain and teach when i panic or reach a breaking point in my life again. Lots of inspiration and I realize leaving was not the right way to heal
    Experience is the only way to survive. <3 Rini Orange

  6. #26
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    Quote Originally Posted by blove78 View Post
    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.
    ooo nooo u found the mother load! hehe nice to be introdue, i am Erin and 20 going on 21 and have had it official for 2 years this mount. my bf is also floating around hear somewhere and may like to hear from a healthy person looking in perspective. I would say EVERYONE hear has a lot of good advice and your best start is learning to navigate the sight some, it is a tad ticky at the get go, and reading a\ stories. posting threads with questions or a highlighted topic can help you too It is very sweet for you to join and be so active in understanding!
    Experience is the only way to survive. <3 Rini Orange

  7. #27
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    Quote Originally Posted by Rini View Post
    I also have been gone to long and probably would have missed it ether way but i really value that everyone hear is so patient and willing to explain and teach when i panic or reach a breaking point in my life again. Lots of inspiration and I realize leaving was not the right way to heal
    Rini, you only JUST missed what prompted this thread, and it was only a week or less where an impostor hacked an account, took over a thread, and got some of us swept along in a very convincing but fake scenario. The entire thread was deleted, and you are lucky to have missed it. In the overall scheme of things, it was a blip in time and insignificant to the forum. We are glad you are back posting again!
    Anne, dx'ed April 2011

  8. #28
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    Me too, Hurray for the chief and everyone on this fantastic forum. It is even teaching me a new skill, the computer. I never thought I would learn and didn't really care before. When I figure out the photo albums watch out guys. AWESOME was a great word to pick. You are Awesome Rebekah. For a forum full of sick people, I don't think I have ever met a more upbeat group of people. ANIMO for WEGGIES It sound as if I also have missed a lot while I was away.
    Last edited by Barbara N; 05-02-2013 at 04:40 AM.
    My blog: Animo

  9. #29
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    thank you all for the information and kind words, i appreciate it very much and do plan to investigate this disease further to try to understand as much as i possibly can about it.

  10. #30
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    Quote Originally Posted by Rini View Post
    ooo nooo u found the mother load! hehe nice to be introdue, i am Erin and 20 going on 21 and have had it official for 2 years this mount. my bf is also floating around hear somewhere and may like to hear from a healthy person looking in perspective. I would say EVERYONE hear has a lot of good advice and your best start is learning to navigate the sight some, it is a tad ticky at the get go, and reading a\ stories. posting threads with questions or a highlighted topic can help you too It is very sweet for you to join and be so active in understanding!
    I am ALMOST ready to put "Honorary Weggie" into my signature. The labs from my bronchoscopy are taking FOREVER to come in. My expectation, based on my pulmy's comments after the procedure, is that there will be no Wegners. We believe my problem is probably bronchiectasis (say that 5 times fast)....probably brought on by a childhood bout with meningitis, along with yearly bouts of bronchitis. But, I have received so much help from this group - and have come to feel that I have a new circle of friends. So - I plan to hang out here no matter what!!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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