ANA Discussion Forum
AN Community => AN Community => Topic started by: Desilu on August 16, 2009, 03:52:17 pm
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Hi All,
Ann here aka Desilu, just wanted to say that although the Convention was very informative (it was my first one), my favorite part was getting to meet everyone that I have been in contact with for the past 4 years in person! Not only did I get to see everyone face to face but I was able to give tons of hugs too! I really enjoyed myself and hope everyone else did also. I have sent my photos to Phyl and hopefully she will be able to put them on line for everyone to see. Hope everyone has a safe trip home! Looking forward to seeing everyone else's photos. Have a great day, Ann
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Ann -
getting to meet my fellow forumites was a huge highlight of the symposium. It was SO great ;D
I also liked trying out the new BAHA device (BP100) and hearing how wonderful it is. I can't wait to upgrade!!!
Congratulations to our very own Phyl, who was given a much deserved award by the good folks @ the ANA.
Love ya, Phyl. Keep up the good work!
Great to meet you Ann.
Jan
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Ann and Jan... honestly, what a genuine pleasure to meet you both... and everyone from the forums that were there (as well as non-forumites... but I have a sneaky suspicion that things are going to be even MORE busy around here with new members as well!). I'm exhausted.... and the storms in Chicago did not help us fly out... Capt Deb is now stuck in Chicago overnight as her flight was cancelled due to the storms and she'll fly home early Monday am.
Ann, I got the pics and will post tomorrow for all to see. It was an exhausting trip, but exhausting in a major good way! Thanks for the congrats although I do not feel that I honestly deserved it... as I know many others that should have...... I just do what I feel helps... and for all that everyone does here... I share it with YOU all... as you all are what drives me to continue my efforts. Since I was not able to verbally say anything up on stage, I wanted to extent my thanks to everyone on the forums.. .and those from the WTT list... as its YOU ALL that are my driving force. I am very honored, very humbled, very blessed.
Anyway, glad to be home. I'm going to go snuggle with the bloke and the Queenie Beanie... and hoping everyone else gets proper rest.
Thanks again all!
xoxox
Phyl
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Hey Phyl,
I left early, can you please explain the award? I'm sure you were well deserving of it! Thanks, Ann
Sorry, Phyl, no need to explain, I just read Mary's post. Pretty Awesome! Way to go!
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I left early, can you please explain the award? I'm sure you were well deserving of it! Thanks, Ann
*notes humbly.......* 2009 Volunteer Achievement Award
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Well, let me tell you, after DRIVING home through that storm, Captain Deb is better off staying put for another night. For a while it was do I pull over or don't I . . . I could still see the lines on the road and the cars ahead of me so I kept on. It rained hard from Springfield to the Missouri line, then all nice again. Thing 1 and Thing 2 (Elbee and her frined) slept through it all but my elder daughter was kind enough to wake up to keep me company through the worst of it. We drove through a similar storm in Nebraska on her college tour trip which was even worse because it was at night, so we enjoyed a little reminiscing.
By the way, the Pirate Exhibit at the Field Museum was FABULOUS. I hope some of the rest of you were able to go. We spent two hours in the exhibit and nearly six at the museum.
Sara
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Sara, I meant to tell you good by Fri eve as forgot you weren't going to be there Sat. I enjoyed meeting you and was hoping you had a good trip home. We left at 1 today and am home and very tired! We did go thru some rain in IL.
The symposium was very good and glad to go again! Cheryl R
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Made it back to our little hill in the woods. Got lots to say about the wonderful people we met and great time we had in Chicago but my two functioning brain cells have gone comatose. Will scribble in the morrow.
..take care all... tim b
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Sorry to hear the good Captain is stuck in the Windy City, but there are worse places to be ;)
Incidentally she purchased a real kick-ass authentic pirate hat at the Field Museum - hopefully she'll post pictures for all to see.
Jan
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Hi all,
I enjoyed meeting everyone that was able to attend and hope that those that couldn't this time will be able to next time. Not only was the symposium informative, I agree with Jan the HIGHLIGHT was meeting so many wonderful people.
I hope everyone's trip home was or will be uneventful. I crashed into bed!
Thank you all for adding wonderful memories!
Cap't Deb......Take care and LOVE the new hat!
Mary
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Anyone else think Michael Gates Gill had a great singing voice??
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Anyone else think Michael Gates Gill had a great singing voice??
I DID! What a sweet heart he is. The captain and I stayed and chatted with him ...
Steve and I were delayed at the airport and waited around attempting to wi-fi connect my laptop, so to chat, with no luck, as we wanted to get on the forum while waiting for the flight...
It was so great to meet you all. What a a great symposium!
Way to go Pearly Whites on your big award! You rawk! Such a wonderful fun spirit you have! :-*
Hang in there Captain Deb- keep us posted. Hope you do not feel too land locked.
DHM
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I've managed to revive at least one of my two functioning brain cells and washed it off with a goodly amount of coffee. Having managed to kick start what passes as cogent thought with me I started to ruminate on this past weekend. First thought was "Wow, waaaay too much stuff, all good, happened to be able to get it all down in printed form. So I'll just stick to some random thought, arranged in no particular order....
A small standing ovation for all those who worked so hard to make this happen. Well done. The incredible variety of topics and speakers, the knowledge level of the various presenters, the smooth flow of the sequences of the events... all absolutely top-notch, primo, A-number-one, excellento, muy bien, brain cramping good. The only problem that I saw in the whole thing is how in the world can they possibly top that in 2 years in Cincinnati? I'm thinking the ANA staff will have a hard time topping this weekends event...I'm equally thinking, after having met them, they will certainly be able to pull it off and we'll all be even more astounded then.
Thinking about the work and effort of all those that put on the event leads me to start thinking about the recipients of this amazing display of professionalism, compassion, and effort... the attendees. I've attended quite a variety of different gatherings for various national level organizations. They are always an interesting experience. Bunches of people gathered together around a common interest. You may know a few people who are also attending but for the most part you wander around amongst a bunch of strangers. It's relatively easy to strike up casual conversations with these strangers due to the common interest, a few polite words, expressions of admiration for aspects of the gathering, exchanging "Yeah, it's too bad .... wasn't better" laments, and delving slightly deeper into some few issues.
The ANA Symposium was different. It felt different to me and after some thought I know why... it was the people attending. Everywhere I went, sitting in the hospitality room, waiting for the workshop sessions to start, in the buffet line, collapsed in mental exhaustion on one of the hallway couches, I would find myself next to a person I did not know and would strike up a casual conversation. Pretty normal national gathering experience except shortly into the conversation I would detect a consistently startling difference in these conversations. These weren't just people making polite, casual conversation with a stranger thrust into their presence...they were genuinely compassionate, accepting people truly interested in making connection between people that had previously been total strangers. It wasn't just polite chitchat, it was true conversation... thank you all who I was fortunate enough to have held these conversations with.
Alas though, as all good things do, the symposium did come to an end. Reluctantly, we made our way to the airport for the flight back toward our hill. Sitting in the gate area, not really able to concentrate on the book I was trying to read, I started to watch the folks moving around the area. My spidey sense started tingling a bit, something was odd about the situation, something a bit unsettling... I started trying to sort out the reason. I started looking closely at the people and realized what was wrong...it was the people.
I realized that the random folks swirling around the airport were lacking some things I had grown accustomed to seeing in the folks I was around all weekend. The people in the airport seemed to be lacking the lively sparkle of intelligence I saw in the eyes of my fellow attendees (though I will admit to the possibility that at least part of that sparkle was due to our copious use of eye drops, but certainly not all of it). I realized I no longer moved through a mass of people, as I had all weekend, that had so much acceptance and compassion that it couldn't be contained in their skin and enveloped those that came close to them.
I knew there had been no mass alien invasion which had replaced the rest of the population with pod people. I knew that the folks I was seeing in the airport were nothing more or less than ordinary people, just like I am around all the time. The difference was that coming out of the symposium, surrounded by all the amazing people I had spent time with for three days, I had shifted my perspective such that the extraordinary became my new ordinary and the old ordinary seemed hollow and cold.
I'm sure that over the next few days my perspective will slowly shift back to seeing ordinary people as just ordinary people but right now I'm content to simply bask in the comfort of my brush with the extraordinary... thank you all.
..take care.. tim b
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Tim -
as usual, very insightful post. You are so right about just being able to strike up a conversation with others at the symposium. I can't tell you how many times I just looked at someone's name tag and started to talk to them. We shared discussions on doctors, the symposium, our personal AN journeys, etc. - and many, many times I found myself talking about my BAHA; and yes, even showing it to them (abutment included).
I also told numerous people about the Forum, as most had never heard of it. I'm sure we'll have lots of new friends here very soon.
Jan
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Tim, I would like to pass on that this symposium is similar to the past ones I have attended. Some small variations here and there but all well planned and carried out. The good part is all who attend and I have never met anyone who doesn't right off tell their story as we all have our own story. It has always been interesting too in how each dr has their own idea of what a particular patient can do when each person with an AN is talked about. That is what shows how hard it is to make the right choice for everyone. The drs don't agree and say how it is up to each person to make the choice what is right for themselves in many instances. Some are for the wait and watch and others are not as big on it.
I did talk to one couple who this was their 9th symposium. I think it was posted that the next one is Cinncinnati. I talked to an education gal from there who had come to this one to know about it and what will be needed for theirs.
All of us with balance issues got a good workout from the Drakes quite over patterned carpet. Some were an interesting challenge. LOL! It was such fun to meet those who are here. Also super to heard of Phyl to receive the volunteer award. I haven't looked at my pictures yet and will pass some on to someone so can be posted due to my problem with not being able to. Now it is back to real life and my laundry is calling!
Cheryl R
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What Tim said!!!!
Can you belive I'm still trying to get home? I am extremely grateful not to have a migraine this time. The two headache workshops and personal round table discussion with Dr Ryzenman gave me an even deeper insight into the post-op headache phenomenon and I got a chance to meet a few folks who were where I was a few years ago and give them hope that they CAN get better and that things will change with the right meds, a positive attitude and a little time.
It was incredible meeting up with you all and doing a lot of hugging and laughing because you only have two choices--having fun or freaking out......
I love you all!!!!!
Capt Deb
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PS-I'm sitting at the airport wearing the kick-ass hat as it wouldn't fit in my suitcase--people are eyeing me like I'm a little nuts. Got the T-shirt and earrings on too--may as well go all the way! That way no one wants to sit near me. I was dressed the same at Saturday symposium lunch and head honcho Dr Wiet came and sat down right next to me! Goes to show ya that folks who "get" ANs are real special!
Capt Deb
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I'm so glad that some of the rest of you were able to take in that pirate exhibit. It was awesome. My souvenir was a little more subtle -- a pieces o' eight pendant. Would have needed my own treasure stash to afford everything I wanted. Deb - did you get the black shirt with the pink skull and crossbones. Very cute.
Sara
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Tim B,
SOOOH well said!!!
DHM
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Great words, Tim. Thanks!
Cindy
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Just saw an update from kay on Facebook...she's currently in Lubbock. They circled Amarillo for a while then had to divert to Lubbock to refuel. Hopefully, they will be on the way home in a bit.
Thank you to everyone for the kind words.
Cheryl, I have no doubt that past symposiums were equally great. There seems to be an overabundance of very high quality people in the world of AN's.
..take care.. tim b
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Captn Deb has FINALLY made it home... her rescheduled flight for today was... again... delayed... but she made it back early afternoon, stopped for some (and her word, not mine) mediocre Japanese food (since Thai wasn't open or sumptin) and then headed to her mountain..... She's all set! Will check on her later.
Phyl
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Please share Capt, about the insight on the post-op headaches.
Thanks,
Anne Marie ox
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Anyone hear from the Captain yet- as to if she got home safely yet?
Captain let us know when you land-ho!
DHM
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Hi all,
Sorry to hear about the weather delay. We just arrived back in Maryland after our drive from Chicago! I guess we missed the bad weather. I enjoyed meeting those of you face to face, and after looking at the picture posts there were many others of you I wished I had met in person to personally thank in getting me through this journey. I wasn't at many of the "social events" as I had the kiddie and hubby waiting for me most of the time. I was really emotionally touched by many of the speakers and got teary eyed more than once! We had a great time in Chicago and looking forward to Cincinnati.
Hope
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OMG, Hope!
You mean to tell me I missed you at the symposium??? I so wanted to meet you.
I thought you didn't make it. Sorry I didn't get a chance to talk to you in person :(
Maybe 2011 in Cincinnati?
Jan
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Jan I seemed to miss connecting with you too. I have pictures of us together but at the time I did not connect that it was you... too much noise and I was obviously missing out on names etc in the rush to take photos and run to the next workshop
Captn Deb has FINALLY made it home...
:-[Oh duh- I missed that when I posted. I have jet lag wonky head today- what can I say. It was such a high to be at the symposium I guess I am coming down and not too swift on the uptake here. ;)
SOOH glad the captain has landed. :)
Night all- I am pooped... not to mention rambling. ;D ::)
Sleep well all of you that got home ...later than you planned.
DHM
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Jan- I can't believe I missed you too. I thought you weren't there either! I figured out a few people from their pictures on-line, but realized I don't have any pictures of me (pre or post surg).
DHM- I sat with you at the brunch on Sun but I couldn't read your name tag from across the table. I didn't want to shout out "who are you from the forum".
It was a little overwhelming with all of the people and multiple conversations going on at the table.
Hopefully I will meet the rest of you in Cincinnati in 2011.
Hope
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Jan- I can't believe I missed you too. I thought you weren't there either! I figured out a few people from their pictures on-line, but realized I don't have any pictures of me (pre or post surg).
DHM- I sat with you at the brunch on Sun but I couldn't read your name tag from across the table. I didn't want to shout out "who are you from the forum".
It was a little overwhelming with all of the people and multiple conversations going on at the table.
Hopefully I will meet the rest of you in Cincinnati in 2011.
Hope
Hope, did I miss you?!?!?!?! *kicks self if its the truth.....* :-[
Phyl
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YES! Hope was the cute little blonde...
K
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I'm putting in my vote for Hope to put a picture of herself up in her avatar, at the very least...putting up pictures on the symposium picture thread would be much preferred.
Kay, your description doesn't narrow it down much...lots of cute blonds running around the symposium, and cute brunettes, and cute redheads, and cute silvery haired folks.. it was like we had stumbled into the initial rounds of "America's Next Top Model". For the life of me I can't figure out why some of you seem to be camera shy. If I looked as good as the folks at the symposium, you'd have to hit me with a shovel to keep me out from in front of the camera.
..take care.. tim b
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Yes, we definitely need a picture of Hope.
I'm betting some of us saw her at the symposium and didn't even realize it was her.
Kay, why didn't you tell me?
Jan
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Please share Capt, about the insight on the post-op headaches.
Thanks,
Anne Marie ox
A lot of it involves head position during surgery--all of my headaches involve or are preceded by severe neck pain. Dr Ryzenman now positions the head and makes sure that the neck is not overly flexed before anesthesia. I really think that the information garnered from the ANA patient survey, particularly involving post-op headaches, is getting the docs to take some more preventative measures i.e. head position, bone dust, etc.
Also I'm looking into a neck traction device as advised by Dr Leonetti.
You'll just have to come to the next one!! Or order the transcripts from the ANA.
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-smiley-12.gif)
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thanks Captn for sharing that! :-* It's funny that it was mentioned about head positioning during the procedure. It was of major concern to me in my initial AN treatment research... due to Chiari 1, I had to be VERY careful for AN surgery and quizzed the docs about it as well. Only one of the reasons (for me) that I chose radio vs. surgical.
Ok, back to harrassing each other about chicago... :D
Phyl
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Capt Deb,
I am going for very intense physio. At the end of all of my exercises and stretches the physiotherapist has me laying on my back. He holds my head in both hands than he gently massages than he press in along the back of my hairline until it is painful. He holds the pressure and than releases. It is painful, but it is a good pain. Today he went further and did my temple area and behind my ear. He told me that he really isn't pressing that hard, I am very tense and my muscles are tight as a result of the surgery, so this is rather intersting that the Docs are now taking precautions. I really hurt tonight from all the treatment.
I plan on attending the next convention. My father-in-law's condition is terminal and he is at the end. It is his heart what is keeping him going. I would have been in Chicago if the situation wasn't so bad. I think I will order the transcript. It will make for some intersting reading and I would like to give my Doctors each a copy.
Jan, do not be so critical of yourself. I too have put on a lot of weight since I have been off on disability. It is a combination of the drugs a lack of exercise and just maybe my age ;) From the pictures I saw everyone looks great.
Anne Marie
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Capt Deb,
Jan, do not be so critical of yourself. I too have put on a lot of weight since I have been off on disability. It is a combination of the drugs a lack of exercise and just maybe my age ;) From the pictures I saw everyone looks great.
::) :)
Oh Goodness JAN- you look great as you are!
You have good color in your face and unlike many of us (me for example) you have a nice symmetrical smile and no weird winking going on as you do so. (Thus I wear the dark rimmed glasses to hide this wink thingy) You have a beautiful forehead and you do not have to do the “bangs thingâ€, as I do, to hide the non-functioning brow (One surgeon called this not Botox- but the “Bangs-tox†approach :D LOL )
YOU LOOK FINE!!!
I just regret I did not connect who you were and give you a big ole hug- right there in Chicago!
DHM
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Bangs-tox . . . that's a good one. As you can see, I use that treatment approach as well.
DHM, while I did see that your smile is not symmetrical, I did not notice any weird winking. As a hemifacial spasm patient, I fully believe you when you say it's there, it's just not as noticeable as you think. So, I'm going to say:
Oh goodness, DHM, you look great as you are, too!
Sara
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Guys, truly I'm not having a pity party here, but I appreciate all the nice comments :)
Case closed - on to more interesting and important things!
Thanks,
Jan
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Finally back home and on the computer again! I, too, will have to agree with many of you that Tim said it all as to the super experience of being surrounded by fellow ANers at the symposium. It was my first symposium so I have nothing with which to compare it but Cincinnati is going to have to work hard to top it for presentations.
However, the greatest plus for the symposium was meeting all of you neat people. Now I am reading about several of you who were there that I did not get to meet and I am disappointed! Phyl and Steve tried very hard to alert us to gatherings of Forum posters, but it was very difficult to hear in the crowds so I missed some of the occasions to meet you. I did have some great conversations with several non-forum ANers and urged them to join this forum. Let us know when you join if we met in Chicago!
My head is still swimming with all of the new connections!
Clarice
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Tim, well said!
The highlight was definitely meeting all of you - I wish the event had been a little longer because I missed meeting a few of you, and I would have liked to have had more time to spend with everyone. However, hopefully we can all gather in Cincinnati in '11. In the meantime, thanks to everyone who posted pictures - whenever I need a smile, I will just go look at all the wonderful pictures.
You guys all ROCK!!
(And, Phyl? Sorry to disagree with you, but you TOTALLY deserved that award - you are the rockin-est chic on the forum!! ;D ;D ;D)
Debbi