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Thread: I found a support group!

  1. #11
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    I have just gotten a PM from a new forum member who actually lives in my town. More later on that, as we progress in our communications. Very exciting!
    Anne, dx'ed April 2011

  2. #12
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    Hi all, I've been MIA here for too long and just popped in to tell y'all something and can't believe how much I've missed. I will try to get back here more often! I'm headed to a Lower Mainland (British Columbia, Canada) support group dinner In a couple of hours! And I'll be meeting Christina, who has come over from Victoria (on Vancouver Island) with her hubby. Hoping to also see another mom from our school (can't believe another Weggie in our tiny little school) who was diagnosed this past year and been through a very rough ride. I will try to get a couple of pics and let you all know how it went. There will be a guest speaker who is a new vasculitis specialist starting a practice in town. She's speaking about maintenance therapy and a new trial. I'll post whatever I learn. Excited to see some real in-the-flesh weggies again! (And have kid-free dinner cleaned up by restaurant staff.. That's always high on my list of things I enjoy. ) I hope everyone is feeling as well as possible and I will be back soon!
    Last edited by LisaT; 03-20-2015 at 10:09 AM.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  3. #13
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    Hope you have a good night and enjoy being waited on !
    Life isn't about how you survive the storm, but how to dance in the rain !

  4. #14
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    That's awesome, Lisa! Is this right in your town? I wish something like that would happen here, including the new vasculitis specialist starting up a practice. Can't wait to hear all about it.
    Anne, dx'ed April 2011

  5. #15
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    Very excited for you!!!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  6. #16
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    Quote Originally Posted by annekat View Post
    That's awesome, Lisa! Is this right in your town? I wish something like that would happen here, including the new vasculitis specialist starting up a practice. Can't wait to hear all about it.
    Not right in Ladner but a 45-minute drive from me. The presentation and dinner were great and it was very nice meeting Christina and her hubby Barry. I have a couple of very poorly-lit pics that I will post when I have more time later. (Kids home on spring break). The new doc will be doing a trial of orencia (which is an RA drug) for treating people like me! (Limited or simmering disease activity, no major organ- or life-threatening involvement but no remission), and she is starting a vasculitis clinic at the Arthritis Centre in Vancouver. Very exciting news! She will send a copy of her presentation and I will post it here under an appropriate thread when I receive it. I thought I recognized her and it turns out she was helping at my rheumy's office as a resident/student when I came in with my subglottic stenosis and lots of tears and anxiety after injections of steroids into my vocal cords made my throat close up to a pinhole-sized airway.. She's the one who suggested imuran which has thus far worked. (At the end of the evening, when we were taking the pics of me, Christina and the leader of the support group, I asked her husband to try with his phone because mine doesn't have a flash, he pulled out his phone and it was in a BATMAN case! Hi, Phil! Thanks for stopping by our Weggie group dinner, as if we could ever forget you... ) So fitting. More later!
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  7. #17
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    Quote Originally Posted by LisaT View Post
    I asked her husband to try with his phone because mine doesn't have a flash, he pulled out his phone and it was in a BATMAN case! Hi, Phil! Thanks for stopping by our Weggie group dinner, as if we could ever forget you... ) So fitting. More later!
    Thank you !
    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. #18
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    Hi Lisa
    I am new to the group just as of now. I am waiting for more testing to confirm GPA, but told I most likely do have it. I live in British Columbia, Canada also Not sure what area you are in. I live in Surrey BC..if your close to me please do let me know.

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