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Thread: My new plans - I'm sharing my crazy ideas so I can be held accountable

  1. #21
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    Just sneaking in some forum time for a quickie update.

    I am very happy to announce that I have a TV crew of 15 or so coming up to Jasper to film their Breakfast Television show (3.5 hours) in their PJ's and the whole show will be around autoimmune disease awareness.
    Bang! I was so happy when they called me with the OK, that I did a crazy happy dance and tweaked my back - ha ha ha hah.

    I have a few other pokers in the fire, but I'm over the moon about this one. Over the TOP!

    I will keep you updated on what's going down.

    Marta

  2. #22
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    Great news! Congrats!

  3. #23
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    That's awesome ,Marta
    Life isn't about how you survive the storm, but how to dance in the rain !

  4. #24
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    OK, here's the first of the media coverage I'm getting on this... you guys are my buds, my first buds in this world of Wegener's and autoimmunity, so you better all be wearing PJ's March 1st and take some pics and send them my way. The more I have from all over the globe the more power we have for the next events getting media coverage and various sponsorship.

    Al (Rest in Peace) and I spoke at length about how looking for a cure for autoimmunity is the way to go if we want to see a cure for Wegener's. I actually had a reading (Angel reading) and she said that Al was there in the room and backing me up all the way. She described him in a gray sleeveless sweater talking about all the great music on the other side and he said he can go to any concert he wants to... it was Al for sure. I can tell I'm getting help because I got that crew to do a whole show on autoimmunity, I just managed to score them free hotel rooms (13 of them for three nights - a tough task in a small town that's full for a Junior Olympics event that weekend) and everything seems to be falling into place. I'm definitely getting some sort of help that's way beyond my capabilities.

    Here's a link to the Health segment on a different TV station than the one that's coming up: Pajama day - News Hour - Videos | Global Edmonton
    ...and I look forward to some PJ photos.

    We can't complain about not being able to see a cure in our future if we don't do anything to make that happen, and in this case it involves nothing more than keeping your PJ's on that day, and maybe talking some of your friends into doing the same and getting some photos and sending them my way. It's a small effort for a very big goal, but it's when we combine all of our small efforts that it becomes something worthwhile.

    Thanks y'all, and know that I am making it my life's mission to do what I can so that our kids never have to suffer with this stupidity known as Wegener's or autoimmunity.

    Love you all.
    marta

  5. #25
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    Marta, you are so amazing! I've made friends with a good friend of Al's, whose name is Judith. She had talked to him at length about his Wegener's, about the forum and the people on it, and about music and recording. She has been following the forum as a guest and I know she will be thrilled to read about your "Angel reading" with Al. It thrilled me, too, of course!
    Anne, dx'ed April 2011

  6. #26
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    I miss Al. I looked forward to his messages every day. He helped me a lot with my hearing. We talked a lot about electronics and music in general. He was so nice to chat with.
    Phil Berggren, dx 2003

  7. #27
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    Quote Originally Posted by pberggren1 View Post
    I miss Al. I looked forward to his messages every day. He helped me a lot with my hearing. We talked a lot about electronics and music in general. He was so nice to chat with.
    He could articulate a lot of my concerns and issues in a much more cogent manner and also provide the scientific basis for such concerns. He also had a nice positive and very kind helpful attitude and seemed willing to try help others even when he wasn't feeling good. I wonder if he knew Jack since they had a lot in common in their temperament. But we need to help Marta get back to her PJ day on this thread.

  8. #28
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    It's time for me to get out of my PJs and go kick some butt at pool.
    Phil Berggren, dx 2003

  9. #29
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    Thanks Anne. You go Phil! Do a Pool night in PJ's. I know you're respected in that community so you should convince your friends to wear PJ's to the bar and play pool. I think you'd make quite a statement... and don't forget to take some pictures.

    On a different note... I just heard about Light! Pardon my language but holy ****. Brian mentioned it yesterday while we were having dinner company and it rattled me. I'm still in a bit of shock. I'm so pissed off at this disease and now there are three amazing people that I know personally and have made great connections to that are gone... there are about 10 others that I knew but not as well that have passed since I got diagnosed.

    A little bit of Light in all of us keeps getting snuffed by WG and I will do whatever it takes to eliminate this disease from our consciousness. I know I have support from the 'other side' and I know we can do it. This is total bull. We (not just Weggies) keep accepting the line we're fed by doctors and researchers, that this is our lot in life and we have to take toxic crap that exposes us to other deadly things and there's nothing else to do but live with it. I will NOT ACCEPT. No way!!!!! There is an answer and it's waiting for us, and unless we look, we won't find it. I will stir the pot until we get someone to seriously look, and from today on, I will stir harder, faster and with all the vigor I have.

    Silent no more. Invisible no more. Sick no more. Vulnerable no more. Passive no more!!!!!!!!

    Lightwarrior, Al, Jack, and the countless others, I feel your strength and it pushes me forward. I promise!

  10. #30
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    Thanks Marta. I really do think Phil and his buddies playing pool would make for a great news story on PJ day!

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