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Lee_Ann

Portland Convention

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Just wanted to say thank you to everyone involved in putting together this meeting.  Dan and I had a wonderful time and met some of the nicest people in the world.  Hope everyone can make it to Chicago next year.  Believe me, it will be well worth your time.

Special thanks to BobW, Funguy, and Dr. Halpern.  Thank you for everything you do.  Your work is priceless.

Also, special thanks to everyone who attended.  It was so nice to meet you all.

Lee Ann

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Hi Dan & Lee Ann,

How priceless it was to meet the 2 of you!! Hearing Dan's story literally brought me to tears, as I sobbed my way through him speaking and you standing so solidly beside him it made me appreciate my family even more-so than I do already! They've truly been my rock as you have been Dan's! Makes me very sad for those that have no family/friend's to support them! CH's is a very sad, lonely, isolating disorder..

Im so grateful to have gotten to attend the conference & plan on attending next year in Chicago!! Can't wait!! Just to be in a room with other sufferer's..many times, I looked around and thought to myself.."Oh my God, I've literally come home.." It was like for the 1st time in 25 years, being truly at home with my REAL family..make sense?

Anyway..Thank you both so much for sharing your story & your selves!! You truly touched my heart. It was an absolute honor to meet the both of you.

Back to Phoenix tomorrow..This has been a great trip but Im so ready to get home & speak with my Dr. about busting. Will keep you all posted.

Be well,

Shellie

;)

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Hi Shellie,

It was so good to meet you too!  I am praying you will find some painfree time soon.  Hang in there, you can do it.

Looking forward to hearing about your progress.

Lee Ann

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Hi Shellie and Marsha,  It was a real treat meeting you both!

I second everything you said about Dan's presentation Shellie, but I also have to mention his incredible sense of humor.  Dan literally had the whole room falling off their chairs with laughter multiple times!  Here he is describing living with gut wrenching pain and one medical treatment disappointment after another, and he still manages to crack hilarious jokes every other minute. ;D

If that doesn't show strength of character I don't know what does!

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Dan's ability to captivate the room was priceless!!!  Damn Dan you may have missed your calling....but then again maybe not!!!  Mick really wanted to hear from you too Lee Ann.  He came home formulating a speech for supporters!  WAhooo!!!  That is huge coming from him and what's even huger is that he meant it from the bottom of his heart!

I can't wait to see what the years fund raising and research brings to us all for the next conference in Chicago.

Having another sufferer come back to Eugene and stay with me until her flight back to Arizona (yesterday) was an experience for me on the side of the supporters.  Witnessing her attacks made me feel helpless and of course more determined than ever to get more research.  Weird, I had heard what that feeling was like from my husband, but I never "understood" it fully until now!!!

WE are one tough, funny, thoughtful, caring, good-looking (just ask bobw) bunch!!!!

hugs to everyone :)

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Good for Mick!!!  I never thought about anyone wanting to hear how I felt.  Several people mentioned it later.  It is a very hopeless feeling watching someone you love in that much pain and knowing there is nothing you can do for them. :'(

I suffered with him(silently) for many years until I started talking to people on this board.  What a relief to find such caring supportive people here.  Thanks everyone for all your support!!! ;D

Lee Ann   

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I agree with everyone, great conference and compelling stories.  It was obvious to me (and probably everyone listening) that while Dan (dave :P) had to endure the pain, Lee Ann was the quiet strength that endured a different pain.  I know supporters come in all types and ya'll represent well on this site and CH.com. 

Cindy, I am glad that you are making positive steps with your supporter. He's a great guy.  We successfully got our new Arizona friend to the airport today for an early launch.  Hope the sawdust bucket toilet wasn't too weird for you ShellieNaz.

Maybe I should just say that I am hoping that we all took a few steps forward during and after the conference.  There was a lot to it.  I am guessing that people didn't even have to be there to get something good. :)

See you next year?? :D

Shaggy 

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Hi all:

I made it back home late Sunday to no internet and a crazy week at work.  I'm just getting caught up now.

First, as it's been mentioned several times before, if you've not been to one of these conferences you cannot imagine how wonderful it is to experience one.  So many new friends, good information and incredible conversations (and stories!) long into the night.  So if you've been hesitant about coming, don't give it a second thought.  PM one of those that was in Portland for the first time, they will reassure you just how great a time these conferences are.

During one of my parts speaking I said I always learn more at the conferences than I ever give or share during my presentation.  This was so true this year, thank you all for bringing your stories, ideas and thoughts. 

Chicago in 2011, be there!!

I'd like to thank a few people for making Portland 2010 a success.

Firstly, 2 local people, Cindy for arranging the oxygen at the conference and Chris for helping out in so many ways, thank you both.  It was great to meet you.

Joseph, you were such a big help.  Folks, this pleasant young man offered to help us during the conference and flew himself in from Georgia to do so.  He handled the registration and many other things in the days preceding the conference.  People like this are special in so many ways. 

To a Doc that was attending the conference, thank you for all your input, comment and questions.  You are truly a caring person, that is evident.  I know you've gone home with some new ideas and a revised outlook on clusters.  I'm certain your patients will benefit from your coming to Portland.

One of the high spots for me was Dr. Dale Carter from Portland, she related to the audience so well and was so very knowledgeable of CH.   Her ideas around conditions mimicking CH was relevant and something to keep in mind. 

Thank you for giving us your time, I trust you enjoyed coming as much as we did hearing you speak. 

There is little I can say about Dr. Halpern, he is such a good friend to ClusterBusters and we all appreciate him being here again this year.

Thanks also to Jack Sandweis for his time and thought provoking presentation

Denny did a great job filling in to the spot that became available at short notice.  Thanks buddy.

Bob, my friend and mentor, ya know I love ya.  Thanks for bringing me into this group and for all you do for all of us.

But the highlight goes to 3 people, Lee Ann & Dan, and Eddie.

I've never heard such wonderful talks, it was moving beyond word as they shared the story of their clusters and treatments.  Wow, just wow.

All 3 of you damn near had me in tears.  <big hug>

Thank you all for coming to Portland. 

Can't wait to see everyone next year in Chicago.

D ... aka FunGuy

PS:  SherriLynn, you thought I forgot you.  Didn't ya.  :-)

This lady organizes the hotels, the food, the rooms and everything else.  She truly does it all and there is a lot that goes on being behind the scenes and out of view to put these conferences together. 

Thank you SL, again this year the conference was a success due to your efforts.

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Hi all,

I hope to hear more inspiring stories next year in Chicago, Eddie, Dan and Lee Ann your personal histories with CH and your success makes everything worthwhile for those of us on the CB board.

1961 mom - I hope you find that mad scientist.  :-)

Alleyoop- BobB - I am enjoying a 6 year remission longest ever, do you think it could be the aging process?

Mast, if you are reading this I sent the wine glasses to you today.

And Eddie don't forget the letter openers that I won in the raffle.  :-)

Best wishes to you all and I hope to see you all in Chicago next year.

Marsha

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Alleyoop- BobB - I am enjoying a 6 year remission longest ever, do you think it could be the aging process?

Nope, with your pulchritude, no way!!  ;)

It must be from using alternatives. :)

Whatever it is, may it continue indefinitely!!!  :) :) :) :) :) :) :) :) :) :)

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Hello everyone! This is Dave!!!! Not really, this is Dan and I am finally on the board! The main thing that I wanted to say is that during my talk to everyone I failed to mention Lee Ann enough. Lee Ann, Lee Ann, Lee Ann! There.

LA and I have been lots of places but Portland was the trip of a lifetime. What great people! Cindy, I hope you got a new O2 mask...makes all the difference. Daniel, my brother, you and I could be trouble together. I cant wait. Denny...you know. To Bob, Dr. Halpern and Doug ...THANK U

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Dan & Lee Ann, As I listened to your story I thought to myself how ironic it was that our lives ran almost parallel for almost the same amount of time and we lived just a few hundred miles from each other and had we known we could have been such a help to each other. And then I began to think how many more that may be out there suffering the same hell we went thru and no one to help them ---and I cried.  When it came my turn I had not done any preparation since I had just been asked the night before, so all I could do was speak from my heart.  I'm sure I could have done better, and I will try to when I post my story.  Dan,  you and I both know what an angel looks like because we are both married to one; we would not be here today if we didn't have them by our sides.  We are a couple of VERY BLESSED DUDES!

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It is a very hopeless feeling watching someone you love in that much pain and knowing there is nothing you can do for them. 
It's not hard to imagine that you feel that way at all, but you

ARE doing an incredible amount for him, I can promise you that without hesitation.

you and I could be trouble together
I'm holding you to that... Oh man, there's some fun times to had in the future  ;)

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Eddie, I know I didn't give you much time to prepare but you were amazing.  Thank you.

Both you and Dave & Lee Ann were.

Dan, I meant Dan.

lmao, please Lee Ann, let me get past the Dave/Dan stuff.    ;)

FG

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hey Denny my main man! I never needed much help in the getting in trouble dept. but always "funner" with good buddies.

Had a fun trip but a bad case of the Green apple quickstep when I got back home. All better now. It actually may have been the "Oregon wild blackberry quickstep".

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Hi Guys- 

It was nice to get home but Im still feeling pumped up & excited from the trip! Daniel, I agree w/you about Dan's sense of humor..I literally was laughing my self silly one moment & the very next choked out some very long awaited sobs(Still sorry about that Chris, didnt mean to cry all over you & I really am NOT a cry-baby! ;)..I keep repeating that it felt like I found the long lost family I had been searching for! I was just chatting w/ a local sufferer telling him it was like I had finally "gone home!" I truly can't thank all of you enough.

The picture you posted is beautiful, Bob! Portland will always hold a very special place in my heart. Next year in Chicago will be even better although I cannot imagine how!

Had a bit of a tough night last night..It's our Monsoon season here right now so storms & rain..Dust storms more so than anything & the dust just kills me!! So, Im off to run a few errands before it gets too hot! Have a good day everyone!!   :-*

Hug & lots of love from Phoenix..Oh and btw, Chris, I told you...I have CH's, I can hack anything!! A little sawdust never hurt anyone!!  ;)

Be well All-

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