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Everything posted by 1961mom

  1. I love that guy too! I've added his facebook page to a list I've created called "Deep Brain List". Anyone who is a facebook user can subscribe to this list! https://www.facebook.com/lists/3006488728758 It's sort of an eclectic mix of pages. One page I particularly like is called "Lovely Clusters". It has nothing to do with CH, I just love the title. 98% of the pages are related in one way or another to our disorder. Examples are Neurology Now, Multidisciplinary Association for Psychedelic Studies (M.A.P.S.) and The Alliance for Headache Disorder Advocacy. I've included his page because of his research involving the hypothalamus & Parkinsons. I figure one of his many researching physicians may just discover something in a brain labeled "click here for CH" while in the lab! It could happen Nice post ClusterHeadSurvivor
  2. Hi Everyone! This years "Headache on the Hill" event webpage is now open! Last years event was incredible. The Alliance was thorough in their training that took place the day before the event at the Radisson Hotel and they were thrilled that we were able to send a team of 12 to take part in the event. I know I felt a teensy bit nervous, but they were so professional and accommodating that it only took a few moments to get into the rhythm of things. I videoed a portion of the training. I'll try to post a link to that tomorrow, but tonight I just wanted to share with you the link to the Washington DC Event before, the official event invitations arrive in tomorrows email. I would be glad to share with anyone who has questions about how the event went last year or what to expect. I urge you to consider joining us this year!! http://events.constantcontact.com/register/event?llr=asfwt7iab&oeidk=a07e6y8jz2d093250aa Honestly, the only thing I'm going 2 things I'll be changing this year are; 1. I will not leave my winter coat on the airplane! 2. I will take a taxi to the capital (I will not ride subway! lol)
  3. That's the spirit Jeff! Welcome Timm-Denmark, we're glad you found us!!!!
  4. Thanks for the compliment Bob! You guys ever read "Chicken Soup for the Soul"? There's a particular story about a kid on a beach... The beach is filled with thousands of stranded starfish. The kid is watching a man toss starfish back into the ocean one at a time. Finally the kid say's to the man, "Why? Why do you bother? Look at all these starfish! You'll never be able to save every one of them, it just doesn't matter!" The man, tossing another starfish back into the ocean said....."It mattered to him!" I'm sure I've come close to being blocked from a facebook group or two, lol! I know I've blocked one completely myself. It's just that there's 1 billion using the social networking site now and I only have 561 starfish on my friend list! http://mashable.com/2012/01/12/facebook-1-billion-users/ Those that wish to "learn" about alternatives usually find a way to send a private message.....if they're serious, they'll make their way to the boards  One star came to the conference from Canada!!!!! Wooo hoooo!!! But the real reason I stay, chat, friend and chat some more is for the Advocacy angle. An area in which I hope CB successfully triples or better yet quadruples this year. I've heard over & over again incorrect information regarding CB conference content. Shame and tsk tsk!!! This minimizing by fellow cluster headache patients who are aware of the scope of what's being done within this particular community coupled with NO mention of all our advocacy work by the naysayers and censoring types on FB confounds me. Those people are just speed bumps in this mission. No time for that crap. I'm in it for those who aren't aware of all the politics. They join us when they're informed. The areas Bob & the Board of Directors have successfully moved this group into in the past year provide something for everyone. The AHDA, SAMHSA, Blogs that were once dedicated to Migraines only now include our patient group regularly. Visit my facebook page to see the current action alert! lol https://www.facebook.com/cindy.reynolds.1961?ref=tn_tnmn Who can deny that our story is compelling. Yep, it's controversial too. CB has multiple sides emerging and that's exciting! Do you guys know that at least 3 of the attending DC advocates didn't connect that the invitation to "Join us in DC" was an email sent by Clusterbusters?!!! They asked me at the breakfast "How did you find me? Imagine their surprise when I told them "I didn't. You found us!" Wow. And yet they came! Speaks volumes to me. They're cluster headache patients who were thrilled with the opportunity to represent all of us! Makes me want to cry. I'm not kidding. I love this place. In my heart, busting was a beautiful discovery that launched an even more beautiful commitment. And if in 5 years all those "speed bumps' on facebook have an effective treatment because of all the work done here, It'll be worth it to me.
  5. Now wait a minute your lightening bolt was purdy Spiny! LOL Next year we'll take your donation offer & award your awesome bambi jerky to the person with the highest "Angel" donation!!!! Always working every angle!!!! Hope to meet you in Chicago!!!
  6. I've got a couple more.....damn it was late when I was doing last nights posts! More VIPS.....
  7. Jeff's flame must have been bionic! Moderator bounced that flame! LOL Damn it!!!
  8. True, so true! Siouz76, IMHO you explained it yourself as to why it's so understandably hard to stay connected. Fear. It's horrible. In fact it's the biggest thief ever! I sometimes think this fear has worked in favor of the medical/science community. Maybe it's subconscious on their part, but it's worked for years to keep us isolated from one another. I don't think science could have helped us 50 years ago, or even 25 years ago. I think science has only recently advanced enough to begin to dissect the complexities of cluster headaches! Sensing this to be true has taken a large portion of my fear away. In fact it's rather exciting!!!! One day we'll do 24 hour fundraising walks toting our portable 'e' tanks around middle school tracks across the world!!! Just a 'screaming and a' huffing 02....together!!!! ;D
  9. Sorry if ya'll missed the time & place of the last photo....my hubby really was going to buy you all a drink! Â
  10. Glad to see you on here Andrew! I'm happy to report that I can see again! Good Gawd, I wasn't sure I was going to be able to say that after all the neon lights!!! I still feel like I missed getting to really chat with many of you guys at the conference. I'd see you, want to start a chat and get distracted with something and poof, you'd be gone or the break would be over! Can we redo in SloMo? LOL Can't wait to see Molly's production!!!!! Best conference yet
  11. The mosaic is on it's way via UPS! I'm so excited! It's just beautiful Ms. Brew!
  12. [move] $345.00 So Far! THANK YOU, YOU GUYS ROCK! [/move]
  13. 8-) Jeebs!!!! Yes! We'll finally meet! 8-)
  14. [move] Bob sent a message this morning.....He's leaving now to warn Vegas of our arrival! [/move]
  15. Those Texas crabs made for one helluva good time whilst I lived in Louisiana! Saturday nights on red dirt roads, a Ford Pick up and migrating... Texas crab! Made for great fun or road bumps......yeee haw! Good times! Ps...They're 1000x smaller. We're viewing them under a microscope in Brews pix! Am I gonna recognize you Denny? lol :D
  16. Wow Denny's sure got a lot of 'good friends'...such a lucky man! I think an O2 Supplies Swap Meet is a great idea!! Put that one in the new suggestion box BB No need for anyone to bring the M tank regulator (unless you want to swap/sell/donate to another ch'er) We'll have just the one M tank in the meeting room and we've got that one covered. It goes up to 25lpm Dan! Now I'm off to watch Oregon beat Tennessee Tech today, going crabbing off the Oregon Coast tomorrow, work a day or 2 and Finally......be able to say "Vegas or Bust!" Can't wait to you allÂ
  17. "Angel Wings Fundraiser" This is for all who really want to be at the conference but for whatever reason, just can't make the trip! The link will get you to the "Clusterbuster's Causes" page and for a minimum donation of just $10 your name will go on a set of "Angel Wings" and prominently displayed at the conference! [smiley=evil.gif]We can do lightening bolts too!!!! Those are extra special..... lol [move]       [smiley=engel017.gif]       [smiley=engel017.gif]       [smiley=engel017.gif] [smiley=engel017.gif]       [smiley=engel017.gif] [smiley=engel017.gif]       [smiley=engel017.gif]       [smiley=engel017.gif]       [smiley=engel017.gif] [smiley=engel017.gif]       [smiley=engel017.gif]       [smiley=engel017.gif][/move] http://www.causes.com/actions/1681117?email_members=true&fb_source=message
  18. Now that's what I call a....... [move]Full Monty Conference![/move]
  19. I'm with Dan.....as far as favorites go! Clearly Lee Ann is with Dan, "the force" is with Dan and most likely the "men in black" too! Loved getting the special "group" therapy session led by a fellow CHer trained in psychology! I just felt so united & vulnerable at the same time....sort of the same as the year before when we all took the PTSD tests!!! Looking forward to Carter Lee's presentation this year for the same reasons!!!
  20. I predict it's new home may very well be in the Willamette Valley! Just sayin............ ;D ;D ;D
  21. Life has given us some pretty tart lemons.....thanks for making lemonade out of these lemons Bob, Kim & Larry.
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