ANA Discussion Forum
AN Community => AN Community => Topic started by: CHD63 on April 03, 2009, 04:38:57 pm
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As a relative newcomer to posting on this forum, I want to thank those of you who have responded with such positive solutions and outcomes. It helps so much to be continually reminded that things could be a whole lot worse ….. and most certainly will get better with time.
However, I still feel like an outsider eavesdropping on a wonderful group of friends’ conversations. I guess that is inevitable at first on a forum such as this and perhaps that will change as I post more. But, it does make me reluctant to jump in mid-thread.
Not being quite clear about this; is the forum sort of a separate support group, almost outside the functions of ANA? Also, do very many of those posting on the forum attend the ANA symposiums? My husband and I are registered to attend the symposium in Chicago in August, but I am wondering if that is actually a different group of people than those posting on the forum. It would be fun to actually meet some of you that I have “met� via the forum. Is there a gathering for “forumites?�
Clarice
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Clarice,
First of all, welcome to the Forum.. NEVER be afraid to jump into a conversation on one of the threads. We're all hear to share experiences and therefore we all learn from that shared experience. You have your own unique journey and the rest of us can learn from that.
Secondly, there are many people on this forum that attend the Symposiums.. There has even been talk of dawning a scarf, or pirate gear or something to differenciate Forum people from non-forum people at the Symposium. If you and your husband are already going, then you'll very likely have the chance to meet many people that particpate in the forum. Captn Deb, Jan, Phyl, and Steve are going for sure (sorry if I left you out, but those came to mind).. there are LOTS of others. I'm still a "maybe" on going or not.
I'm sure there will be a gathering of sorts of forumites there, but nothing that I've seen is set in stone. Perhaps drinks in the Hotel bar or something.. A bunch of us owe Steve a drink for knitting us this beautiful hat (seen in the picture by my name)..
Jump in, have a ball.. Ask questions, answer questions.. Here, the world is your oyster. :)
Regards,
Brian
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We find each other quite easily and usually we end up sitting together and eating together at the symposium. We are always on the look out for the other forumites! Plus get what group picture we can at some point. It is such fun to get to meet those we get to know thru here!
Cheryl R
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Hi Clarice!
Please don't ever feel like you don't belong here - everyone is welcome!! Unfortunately, as with any group of friends, there are a few "inside" jokes - not because we want to exclude anyone, but because we have experienced these things together! Like it is NO SECRET that Jan and Lori seem to always stir up trouble, while I on the other hand, am the angelic one of our trio! ::) Many people are going to the symposium - I am still unsure whether I will be able to attend due to other family commitments but I sure hope so because I want to meet everyone!! I have to buy Steve (who is fast becoming the biggest lush here) a drink for the great hat he knit me!! ;D
Give us your 2 cents!!
K
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I will add that the symposiums usually have over 200 people attend. I have been to the last 3 since I have NF2 and like the info. Never knew I would traveling the AN way! LOL! The last one in 2007 had the most posters. Maybe 20-25. A few was there that I did not know were posters as most of us found each other. there are the large sessions and then the small ones of the type you picked out.
So know you will enjoying yourself, learning some possible new AN info and meeting those who know what it is all about!
Cheryl R
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Yes, Clarice, Angel Kay will be busy out saving the world the same weekend of the symposium, so if she can't get some other angel to cover for her that weekend, we won't be able to see her! Which, of course means that Jan and I will be completely out of control! ;D
This will be my first symposium and I'm looking forward to meeting my forum family in person. And rumor has it, Jan is buying drinks for all of us and then taking us on a shopping spree! Talk about an angel! ;)
I expect the symposium will be a nice mix of information and socializing with other AN-ers. For a whole weekend, we'll all feel "normal" again!
Welcome to the family!
Lori
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WOW! Talk about speedy responses!! :o You all make me feel much better. Before I was just vicariously (sorry for the big word ..... couldn't find another way to express it :-[) feeling supported, but now I am feeling actually supported. Thanks so much!!!
We are really looking forward to the symposium ..... drinking with our AN forum friends will be a hoot ..... don't we have enough balance problems already! :D
Clarice
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However, I still feel like an outsider eavesdropping on a wonderful group of friends’ conversations.
Hi Clarice,
It rhymes with Paris, right? ;)
I'm a little worried by your feeling of being an outsider; we are supposed to be an open an inviting forum. But, you did post about it, which is the right thing to do, and now you have been properly welcomed into the group.
Not being quite clear about this; is the forum sort of a separate support group, almost outside the functions of ANA?
The ANA hosts this forum, along with all the other activities it pursues to support AN patients, provide information to patients and doctors, and promote AN awareness and education. The director of the ANA even posted here recently, commemorating the 100,000th post; I fully expect her to post again when we reach 200,000. :D
Membership in the ANA, local support groups, and this forum are all independent of each other; you can find people who do all three, only one, or any combination. I hope many of us will make it to the symposium in Chicago; I look forward to meeting you there.
And seeing you here more as well, now that you are an insider. 8)
Steve
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Clarice -
As for participating and jumping right in - please do. You can probably tell, although someone may ask a question of Jim, for example, most times the rest of us will give our two cents worth too. Anyone can answer any post, so don't hesitate. We're a tough bunch to keep quiet - despite Kay and Lori claiming to be angels :D
The symposium in August will be my first - I missed the one two years ago since I had my surgery in late May and was pretty much oblivious to the fact that the symposium even existed. I am definitely going to be there this time - as are several others - and I am definitely planning on getting together with forumites. I am a symposium sponsor (yes, the only real "angel" out of the JKL - Jan/Kay/Lori - trio LOL) and I am working in some capacity as a volunteer, but I plan on having plenty of time to socialize.
Don't believe the rumors. Although lots of us owe Steve a drink or two for our beautiful knit hats, it's a well-known fact that all other drinks will be purchased by Steve for the rest of us. So please make sure you and your husband stop by the bar ;)
As for the shopping spree, I'm not taking the crowd to Michigan Avenue, but I will make a trip to the Jade Dragon Tattoo parlor if anyone wants. We'd have to arrange transportation, but it's doable.
Pooter - what do you mean you don't know if you're attending??? I thought Phyl already had a seat for you on the Moderator's Jet. We'd be very disappointed not to see you in Chicago :'( And we all want to meet Jenni. But on the bright side, if you can't make it Lori, Kay, and I will have drinks - compliments of Steve - in your honor.
Steve - thanks for actually answering some of Clarice's original questions - as some of us were too busy horsing around to do so ::)
Okay, my fingers are getting tired of typing - someone please tell Clarice what a hijack is. Lori - this is your cue, since you and I can hijack with the best. Kay's not too bad at it either ;)
Jan
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Steve and Jan .....
Thanks for the welcome and answers to questions. Now I am really looking forward to the symposium to meet those of you who will be coming. (Think I'll pass on the tattoo parlor, however ..... ::))
OK, now I'm curious .... what's a hijack???
Clarice (rhymes with Paris ;))
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You people are too funny! I'm sorta new to the forum, Clarice. I'm still trying to figure this out, and the people/personalities.
I too felt kinda weird just jumping in. My original post was "Need support with facial paralysis issues...." And that got me jumping into all sorts of topics.
I'm almost 3 years post op with some nuances, so enjoy supporting others.
Basically, you sign up, the cyber sky is the limit.
Hope to hear more from you.
Maureen
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Clarice or Paris or whatever your name is.. ;) A hijack is just what it seems.. You're going your merry way down the path of a conversation and whammo someone jumps in and takes a totally different path than the conversation dictates.. e.g. hijacks the thread of questioning. JKL are notorious for hijacking. I, on the other hand, NEVER do it. :)
Jan, I'm still working on getting Jenni to commit to going. We have childcare to worry about also, so it's been difficult to get her to commit. I'm still working it though. Right now, I'm slightly better than 50/50 to attend by myself but worse odds are that Jenni will be there. I do want to go, though.
Regards,
Brian
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I'm almost 3 years post op with some nuances...
What a lovely way of putting it. :)
Steve
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Hi Clarice
I always thought it rhymed with Maurice. Sort of.
Anyway, welcome and don't be intimidated by anything that goes on here. You will find this Forum covers the Human Condition quite adequately. Sadness, grief, pity parties, coping problems, information and medical nuances that I don't think your average intern knows, dissecting every twitch, pain, throb, "wonky headed" issue, victories, set-backs, births and sadly deaths (not AN people, but relatives/friends of AN people) and silliness, black humor, any humor (because as I said some time ago, "What good's a tumor if you can't use some humor to get you through the day or the night."), and often some good old fashioned belly laughs. Along the way some sincere friendships have been formed and I do think it will last a long time, if not forever for these folks. Some people like to stay and help others and enjoy the camaraderie of the AN Forum. Others come, get what they need, and then go quietly back to private life after their treatment.
And you can use big words! Jim, Steve and LADavid do! ;D ;)
Anyway, Clarice, welcome.
Sue in Vancouver, WA USA
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Clarice ~
As is often the case, I'm a little late to this discussion but I'd like to add my agreement with what has been stated by others.
You're very welcome to post on any thread, at any time. There is no 'pecking order' here, in terms of who can post, although we do have specific categories and prefer to keep messages in the appropriate category. That is why I'm putting on my moderator's chapeau (an old '30's-style leather football helmet) and moving this thread to the 'AN Community' forum, which is intended for messages that are not specifically related to acoustic neuroma and related issues and/or drift into personal exchanges, which are not a problem and even encouraged, but preferably in our 'AN Community' forum. I'm sure you'll understand the rationale behind this move. Frankly, it's one of the main functions of the moderators position because - most of the time - our members are quite well-behaved and little moderating is necessary.
Clarice, at any time, if you feel you have something to add to an ongoing thread, please do so. All comments are welcomed. Yes, some of the 'veterans' (like me) may be a bit more familiar with each other or occasionally post what may appear to be 'inside' jokes but in reality, we're all friends with a common bond. Unfortunately, that bond is an acoustic neuroma but we support each other and use our collective experience to inform others and our sense of humor to keep things from going all dark and dreary. Occasionally, we'll have an opportunity to get together socially such as the upcoming April 19th 'AN Brunch' being held at Maxwell's in Worcester, Massachusetts. I'll be attending that brunch, with my wife, the lovely and gracious Tina. As a resident of Connecticut, I'm able to attend and I always enjoy the camaraderie. Regrettably, I'm not able to attend the Chicago symposium in August but I know my AN friends will be posting lots of information and photos here, which I'll enjoy. I can guarantee you that you'll receive a warm welcome from other 'forumites' when you meet them in Chicago this summer. Let me add that it's good to have you aboard, Clarice, and I look forward to seeing more from you in the weeks and months ahead. :)
Jim
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Hi Clarice-
And, a welcome from me, too! Add me to the list of symposium attendees - my hubby, Willie, and I are already registered and paid up. I can't wait to meet the other folks from this forum - they are wonderful people who held my "virtual hand" and dried my virtual tears and calmed my very real fears on more than one occasion. Can't wait to meet you, too, Clarice.
And, Pooter - please convince Jenni to come to Chicago! You are a special member of my AN family and I would so love to meet you both.
hugs to all,
Debbi (sneaking up on my one-year anniversary!)
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Hi One and All ....
Sorry if I sounded a bit "wall-flowery" on my original post. I guess the school teacher in me came out ..... When I was teaching I tried to always be aware of that student who hung back from the group and then do something to bring her/him back into the mix and feel as though they counted. Well, you all have done just that and I thank you!!! :-* :-* :-* :-*
No problem to move this thread ..... I debated about whether to use AN Community in the first place. (I'll learn my way around here eventually. :-\)
My husband, Truman, and I sat down this afternoon and plotted our trip westward this August/September. Although we live in West Virginia now, I went to high school in Minot, North Dakota (YES, WINTERS WERE COLD THERE!). A significant reunion is planned for September after the symposium in Chicago in August, so we decided to make a swing to the National Parks in Utah in between. Here's hoping I remain upright while looking at the majestic highs and lows of the scenery!!
Clarice
P.S. Deb, "Maurice" can be pronounced two ways, as well ..... oh my, that's another whole story ..... truly, I answer to anything, but thought I would try to get it started here the way my mother wanted it. :D
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JKL are notorious for hijacking.
Ha, Pooter! Surely you jest!!! :D
Hope to see you - with or without Jenni - in August.
I, too thought Clarice was pronounced like Maurice (sort of). Didn't realize you could pronounce it like Paris ???
You know, that's one of the best things about this forum - you learn new things every day. And not just about ANs, either.
Yeah to Debbi and Willie on the symposium attendance ;D
Jim, we'll miss you - and the lovely and gracious Tina also.
Jan
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Clarice,
Funny you should mention the pronunciation of Maurice! My mom's maiden name was Maurice and it was pronounced like "Morris" - like the cat from the 9 lives commercials. The people in her hometown near Boston could say it right, but once she moved to NJ, no one did. Of course, by then she was married and it didn't matter much since she had a different last name anyway - which was Italian, and no one could pronounce that right either. She just couldn't win, I guess. :D I always assumed it was a Canadian or French pronunciation.
Anyway, sounds like you have a great trip planned. Glad you're not attending a reunion in North Dakota in the winter! Or is it already winter in September? But, to quote Larry the Cucumber of Veggie Tales, "Minot be so bad - if it wasn't for the Badlands".
Lori
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Boooooooooooo to Lori ..... just kidding ;D Actually I am just getting reacquainted with Veggie Tales via our 4-year-old granddaughter so I'll have to ask her where Larry says that.
Clarice
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(http://i540.photobucket.com/albums/gg341/kaybo_09/IMG_0669.jpg)
The promised "Larry & Bob" picture!
K
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Clarice,
There's all kinds of involvement here -- I jump in every once in awhile, especially if I happen to come to the forum and see a 'newbie' who hasn't gotten the grand welcome yet (like, they posted about a minute ago!!). I just remember so vividly how this forum was my lifeline when I was first diagnosed and how important folks' responses were.
It does take awhile to get used to the inside jokes -- there's the pirate thing, and the 'drinking' thing, and the scarf thing, and the knit caps by Steve. Occasionally we get into a "West Coast" vs "East Coast" thing, but mostly we back away from that because we know we might really get serious about that one (both we "Best Coast" folks, and those from the East Coast....:-)
I would love, love, love to go to the Symposium; if paychecks from my new job pay off enough bills that went unpaid after I got laid off in November, maybe I can. I think everyone from the Forum should wear a scarf or a pirate insignia or something like that.
I'm getting my 1-1/2 year post-GammaKnife MRI soon, so fingers crossed............ I've been so lucky with no worsening symptoms, whereas some folks have many things to search for and talk about here. And, of course, God bless those who are willing to be moderators. It's really a phenomenal forum and group of people, balanced information and lots of emotional support all wrapped up in one package!
Love to all,
Dana
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Oh, I forgot why I started to post before -- Sue used "tumor" and "humor" in the same sentence....maybe it's already been coined, but we certainly do display TUMOR HUMOR !!
Dana
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Debbi,
Thank you so much for starting the Magic Scarf, Scarlett really drew strength from it's magical powers.
4/30/09 is just around the corner,
Rich
P.S. sorry for the hijack Clarice ;D
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Clarice,
I'm very glad you decided to join in. As you already know from following along the different threads, the people on here are just the best. Although I am just the spouse of an ANer, they have welcomed me just the same.
Hope I wasn't too out of line with the hijack, I just couldn't resist ;D Though it was just in fun, the sentiment, Debbi, was from the heart.
Scarlett and I will finally get to meet some of these wonderful individuals in Worcester on April 19 at the brunch.
I hope you enjoy the Symposium along with the others this summer,
Rich
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Kay -
very nice picture of the Veggie Tales guys. Did you purposely coordinate your daughter's outfit to match both of them? (Sorry, I couldn't resist asking :D ) Seriously though, it IS a nice picture.
Dana -
great to see you again. Did you notice that Steve's hat knitting isn't just a joke now. He's actually knitting up a storm, even as we speak. His hats are all over the forum - and he has a very nice website dedicated to them also. Check out his profile; there's a link.
It would be wonderful if you do get to the symposium. The more the merrier ;D
Good luck with the upcoming MRI. I'll keep my fingers crossed for you. Please make sure you let us know how it goes.
Jan
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Jan,
Yes, I've noticed that Steve is busy knitting! In fact, I'm close enough to Portland, I can almost hear the click of his needles if I listen closely!!!
Dana
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Hi Dana,
I haven't said hello to you in a while, so I am now. You were diagnosed the same time I was, and had radiation just two months ahead of me. We are in the same part of the country and on much the same AN journey. I just had my 18 month MRI, reported as unremarkable, thank you very much.
I will have to work you into the hat list. Got a favorite color? ;)
Steve
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Kay, what a delightful picture of your daughter, Larry, and Bob! :)
Dana, I sure hope you make it to Chicago!! Too bad we don't have redeemable coupons to use for it ...... it's a steep one!
Rich, I have been following all of the pirate things, drinking things, scarf thing, knit caps, regional things, etc. ..... I just did not feel a part of them, when I jumped in the middle of it all ..... but I am gradually becoming more comfortable as a fellow forumite.
Maybe when I get more stars I can get on Steve's hat list ..... ;)
I've been fighting a lousy sinus infection this week ..... first one since surgery and the returning headaches are not much fun. This too shall pass!
Clarice
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Ooooo, how about orange to go with my snuggly windbreaker... believe me, both the windbreaker and a knit cap will be WELL USED in Ocean Shores. Man, it's cold here. I moved here from San Diego for L..O..V..E, but even love doesn't keep we warm enough!!!
Glad your MRI was "unremarkable" ... does that mean, to you, that the AN is just dying in place? I'm not looking forward to the MRI, but I am looking forward to the results.
Cheers...and thanks for the hat offer!
Hugs,
Dana
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Jan~
I noticed that Kendie matched Bob & Larry after we got back & I was really looking at the pictures! We didn't even know that they were going to be there. That is her favorite PARROT shirt that we got at the Margaritaville Cafe in Cancun - she still has it but I think it is probably too small now. She has inherited Emee's "Cheeseburger in Paradise" one now! She LOVES Jimmy Buffet...wonder why??
K ;D
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Dana, I sure hope you make it to Chicago!! Too bad we don't have redeemable coupons to use for it ...... it's a steep one!
Clarice -
the ANA does offer financial assistance for the symposium. I'm not sure if you have to be a member of the ANA to take advantage of it or not, but registrants are able to make donations towards this fund so that others can afford to attend. I believe the assistance only goes towards the registration fee which isn't as steep as the hotel, but every little bit helps.
Jan