ANA Discussion Forum
AN Community => AN Community => Topic started by: Nancy Drew on September 24, 2008, 02:20:35 pm
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Just curious . . . . I have noticed that some of the folks who have had treatment in the past six months are not posting any more. Is this usual? I have definitely picked out the regulars on this board, but it seems to me, and I may be wrong, that some people "hit and run" once they have treatment. Is this because they are doing well and no longer feel the need to be here. But still, it would be nice to get the positive updates. I am curious as to what I will do once I have my treatment.
Nancy ???
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Ah, Nancy - you'd miss us too much!!! ;D
Some people just come to get the information they need and once they're satisfied, just move on. Some seem to just read up every now and then, and some people are probably just too busy. I don't think that necessarily means they didn't have a good outcome. I think it's nice to be able to give and take what you need from this forum without feeling obligated.
And some of us just enjoy having other adults to talk to every now and then! ;)
Lori
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Nancy -
Lori's right (boy, I say that a lot these days ;) ) Lots of AN patients use this forum to gather their information and do their research and then they move on.
Then, there are those who are truly addicted to the forum (including me) who just can't seem to "let go" ;D
Personally I stick around to help others - and get help right back - plus I find the humor here extraordinary :D
Jan
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Yes, hopefully I will be back with positive post GK feedback! And, since I was W&W for awhile, I have looked back and noticed that I had some "dry spells". I have gotten a lot of good info and support here. And, I hope I haven't made too much of a fool of myself at times. Thanks everyone. Nancy :) :) :)
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I too stick around because I'm addicted. I feel like we are a family. We laugh ;D, we cry :'(, we support one another and when one needs cheering up or encouragement we are all there. It breaks my heart to read the newbies first posting. Knowing first hand the fear and uncertainty of the diagnoses ???
Thank you to everyone on this forum for all of your support. It has helped me so much and I hope I to have helped others.
Anne Marie
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I too stick around because I'm addicted. I feel like we are a family. We laugh ;D, we cry :'(, we support one another and when one needs cheering up or encouragement we are all there. It breaks my heart to read the newbies first posting. Knowing first hand the fear and uncertainty of the diagnoses ???
Thank you to everyone on this forum for all of your support. It has helped me so much and I hope I to have helped others.
Anne Marie
I'm here.. what more could you ask for? ;)
I have to "ditto" AnnMarie.... not only are we family, but I've noted to others how the "torch has been passed along". Many (esp. radio-treated patients) that I have spoken just move along in life. Many do fine... and just move along... many, such as myself and so many others, feel the need to help give back when there were so many here for us when we were first diagnosed. Many here are truly "addicted" to the site and others just plug along. I know of many here that are no longer as active as they use to be....but I still keep in touch with many as best as I can, whether by phone or personal email. Some pop back here from time to time to check on things... and that's ok too. For the Mods, this is a daily reminder of the journey we didn't sign up for since we are here daily.... for so many, it is easier to just move along... or take breaks for a while.
In the long run... you still got us... and that is all that matters :)
Phyl
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Hello to all of you,
I only check in once a week or so to pick up on any questions that I think I can offer help on. I found that by 2 years post op I needed to pull away from the daily reading of symptoms, etc. The break has helped me to think of myself as normal. I don't use the phone any more than is absolutely necessary. Anybody who wants to talk can pm me. Best wishes to each of you.
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I must be one of the truly addicted. I'm been on here nearly daily for three years now! I chime in when I think I can help. It's been a great support for me. And thanks to Boppie, I learned about the TransEar which I truly like. I feel like as a group we know so much about ANs. Thanks to all for the info.
Jean
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I need all the encouragement I can get, and once treated, will continue to have squillions of questions. I t helps me to hear how each of you who has been treated has picked up the pieces of your life and moved on. It gives me courage to face what is ahead of me.
Mags
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I would'nt abandon my AN "family". I know I was MIA for a few months....my excuse is I have a baby ::)
I am currently 8 months post CK and finally today I am feeling prety good....as oppose to the past few months....UGH....
I do hope my 1 year MRI shows good signs.....I REALLY REALLY HOPE.
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I'm here for the Jan and Lori Show. Is there something else? ;D
In all seriousness, I've noticed that if most people don't have post-op issues, they move on. They gather pre-op facts, have their surgery, sometimes give us an update, but drop off the radar screen. Sort of a wham-bam-thank you ma'am jilted lover thing.
I can tell you why I am here. When I was alone and desperate last winter, this family was there for me. No one else was. No one else understood. No one else cared. I am very loyal to those who care for and about me. And I want to make sure that I can share my experience and what knowledge I have, with everyone who is facing surgery or dealing with the aftermath. Of course I still have my "why doesn't anyone get the wonky-head" issues and why is there no genetic research being done regarding ANs, but at the bottom of it all, I, like other family members on this Forum, want to do the best I can to make sure that every newbie and postie is treated with respect and concern and that their questions can be addressed as best as possible. I feel the more that stick around, the better -- even if there aren't post-op issues. One can always give back to the community like several members who really haven't had post-op issues. In addition, I have discovered a lot of bright, humorous, entertaining, diverse, loving, caring, informative, supportive friends here. Friends that I hope to have for life.
David
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DITTO DAVID....DITTO ;)
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i look forward to being a postie!!
this safe place has been so healthy and helpful that i look forward to being able to give back!!
in the meantime us "preposties" will just have to stick together and look to the future!
xx
carrie
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What a nice topic. I am glad to hear that Mindy is feeling better at last, and that Mags has a "squillion" questions. :)
As David said, having more regulars stick around is great, and we do seem to get more as we go along. I like the members like Boppie, who drop in regularly, but don't spend all their time here. It gives me reason to believe that life after AN can be reasonably normal.
As long as some of us are willing to stick around and keep it alive, my view is that others are welcome to move on, knowing that we will still be here if and when they need to come back. Forum life is not for everyone, and not being wired to the Internet all the time can be a good thing.
Personally, though, I wouldn't miss it for the world. Except next week, when I'll be on vacation. 8)
Steve
PS: Hey, maybe "prepostie" can become an official term?
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I'm a 1 year postie now and I was always here just don't have much to say. I think I will always be here so that I can help if needed, maybe just not always actively. From what I have seen there are alot of people out there like me. They don't have much experience with ANs except their own but maybe have one special area they will always respond to when the subject is brought up. Me for example, I will be here if anyone needs help in Germany.
Dan in Germany
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I'm here for the Jan and Lori Show. Is there something else? ;D
*smack*
I have found on many internet discussion forums (regardles of health, political, etc sites) that members tend to be "cyclical" (did I spell that right?) There is a "wave" of newbies that post... and those that stick around.... then those that stuck around tend to dwindle away while the newbies become "those that stick around"... etc, etc, etc.... I think it's also part of the internet age of discussion forums......
Phyl
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I just want to try to help someone! I went through the main part of my AN journey all alone and I wouldn't wish that on anyone else when there are so many people willing to help. I feel like I missed out for so long that I have a lot of catching up to do!! Of course, David (our author), stated it beaurifully!
K
*I'm here for the Jan & Lori show too!!* ;)
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i compulsively go to this site at least twice daily. i have been doing it for 8 years. on the occassion i have felt i needed help i have gotten so much support from everyone. i am very interested in and feel compassion for everyone's issues. i just don't really have advice-you regulars are good with that-and when i need advice i turn! to you and am so glad you are there! i guess my advice would be that i had a pretty bad outcome, but now i have found a great life and my husband has never waivered in his devotion to me and still finds me sexy with a crooked face and wabbly walk and funny eye and one sided deafness and fatigue and years of seeking acceptance (from myself) at the loss of my teaching career. You guys may not remember, but you have helped me with so much. thank you. patti
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It takes time to heal foremost......Cant speak for all, but I guess some just read for encouragement or curiosity instead of posting their updates, they are many reasons but gaining strength emotionally from this forum is what counts..
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Hi there! I`m just waiting and watching but will definately be around AN forums and meetings. I wish I could have more imput as far as post operations but havn`t got to that point yet. I`m just amazed to read and see such nice people which I can relate to what they are going thru. I`m pulling for everyone and if I can thow in some feedback now and then. The best, Mickey P.S. ANANJ has a meeting on Oct 25th. maybe I`ll see ya there!
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I plan on being here for a very long time...Once an ANER always an ANER!!! ;D Now of course when I'm in Mexico for 6 weeks I wont be on here..may be able to check in once in awhile and give updates on the nice weather there...lol...The same when I head to Florida for the month of March...PC stays at home but i do o to the librairy to check in....
This site is the second one I open in the mornings...after facebook...lol
JO
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Jan,
I think we need to start charging admission! ;)
Lori
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The question of why some AN patients seem to abandon the website once past their treatment and back on track is relevant. Fortunately, the answers are clear and have been stated in prior posts from the astute folks that post here.
I've stated before that I fully understand the reasons some post-treatment AN patients choose to 'move on' and no longer post. They obviously feel that they have no reason to frequent a website dedicated to acoustic neuroma issues when they no longer have such a problem due to having had surgery and/or radiation that dealt with it. That is certainly their prerogative. Some feel that they want to share their experience and in the process, help others. For most AN patients, the experience is a major part of their lives and cannot simply be forgotten, as even in the best outcomes, some residual issues remain. I speak from experience.
I have continued to contribute to the forums because I feel that my surgery and radiation treatment that resulted in a good outcome is worth sharing with others recently diagnosed and frightened about their future. I also have some knowledge that can answer a few questions for those considering a form of treatment. Frankly, I like internet message boards and have contributed to them for years. I still post on other boards totally unrelated to AN, so I don't feel I've lost touch or am confining myself to only one issue. However, I do believe that whatever I can contribute here has some value that my comments on other forums on other websites may lack, as being an AN patient is clearly unique. That being the case, I soldier on, even when I suspect my comments may necessarily be repetitive or simply part of a chorus. I feel I'm accomplishing something worthwhile. If that perception ever passes, I'll quietly fade away, like so many others. For now, I don't see that happening. I'm proud to be a part of the 'community' and intend to remain a part of it for the foreseeable future. I hope many others feel the same way. We need all the help we can get. :)
Jim
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I feel this is like Acoustic Neuroma University, and some of our graduates go on into the world and never go back to the class reunions, while others have developed friendships and feel the "kindred spirit" kind of thing and still like to meet at the malt shop* ::)* daily or once in a while to chat and advise, while a very few become tenured and stay on as the beloved professors to help guide the freshman class from Orientation Day to Graduation. Some drop out, but not many. I like to feel that I'm more on the Welcoming Committee, since I know my knowledge is limited to only my experience and I like to leave it to the Professors (Phyl, and Jim, and Steve and others who really study this stuff) to fully educate our students.
And I think that the faculty and administration here at ANU are truly wonderful and caring people who help the student body graduate with honors.
I might nominate this as our official ANU Cheer - - - Cheerleader tryouts set for next week. Somersaults in the air are not mandatory. School spirit is a must, of course.
Go Team, Fight Team, Win Team
Die AN DIE!!
I think it's a given that our school mascot is the Pirate. So we can be the ANU Pirates, and I suppose that makes our school colors black and white, unless you have another idea.
More cheers welcome! School song? Anybody? ;) ;D
Sue in Vancouver USA
** Well, THAT shows my age! HA :D Maybe Student Union is more relevant for 2008! ;)
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Sue~
I LOVE it!! ANU Pirates - Go Team!!
K
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I guess that would make Jan and me the class clowns? :D
Can't wait til spring break! ;D
Lori
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Geez, already wanting Spring Break! ;D Haven't even got to Halloween yet! Of course, now we have to have Homecoming, Winter Formal, Spring Break, Prom and Graduation. Sheesh! ;D ;D
Sue in Vancouver
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WOW,
I am so glad this post got so much attention especially since I just posted it yesterday. Just shows what a supportive bunch of people you are. Sue, I loved what you said about the University comparison. For me, I feel like I have researched, studied like crazy, and have had a really hard time declaring my major (GK, I have finally decided). Now I am waiting for the big test, and I hope I get a passing grade. Hopefully it will be one of the top grades in the class, but if not, then there is always room to learn more. Hopefully I will be able to make it back for reunions, but if nothing else, I have the knowledge that there are professors and classmates here to support me. And, if I don't check back on a regular basis, it just means I am busy with graduate school.
Thanks for all of the replies. Go team!!!
Nancy ;D ;D ;D
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Nancy, you are ANU's top student! Certainly Summa Cum Laud, baby!
Sue in Vancouver, USA
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Great analogy, Sue! Cheerleader tryouts? I always wanted to be a cheerleader, but I wasn't LOUD enough...you guys won't care, though, right? Just love saddleoxfords (sp?)!
GO ANA!!! (said very loudly)
cindy
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This University will beat out everybody else's Pep Squad, that's for sure. Waaaay back in the early 1960's we had the elite Cheerleaders and then there was the Pep Squad, a group of girls that sat together in there Pep uniforms and helped make the cheers louder. We had pretty good school spirit at good old Roseburg High School.
Sue in Vancouver, USA
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sorry gang, had to move this out of AN Issues forum based on the direction of the conversation. Thanks for understanding... and U of AN rawks! :) Phyl
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Oh, man!!! Phyl's picking on us again :D How come she gets all the dirty work? Aren't joef, Jim, and Steve moderators too? I hope you get paid more than they do Phyl for all the censoring and moving of threads you have to do.
Lori -
I was going to suggest charging admission too. I think we should get a suite at the Symposium in August and institute a cover charge; heck, it would pay for our drinks and sightseeing costs. Think about that one and get back to me ;)
Jan - aka Class Clown ;D
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Oh, man!!! Phyl's picking on us again :D How come she gets all the dirty work? Aren't joef, Jim, and Steve moderators too? I hope you get paid more than they do Phyl for all the censoring and moving of threads you have to do.
I don't censor! >:( I just... um... per the rules... um.... do my job...er...... well, someone has to keep you class clowns in line! :)
Phyl
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Just for the record, I'm here (almost 5 months post op) but I mainly lurk and help where I can. For the last couple of weeks, I've been absolutely swamped with closing down one company and opening another. The good news about a small company (there are about 10 of us so far) is that I can get involved (and do) in things that I would never be allowed to touch as an IT type of guy. I'm intimately involved in helping getting the company going outside of my hefty IT load. I've been super busy lately, but it's fun! Now, if I'm truly being paid (even at half-salary that I excpect) for the last week and the next 1.5 weeks, I'd be even more grateful! :)
For now, you'll only see me post sparingly. You all are in my thoughts daily though!
Regards,
Brian
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Brian,
It's good to be busy! And even better when you get paid for it! Good luck!
Jan, a suite sounds like a much more comfortable prospect than sleeping on your couch! We may need to hire a bouncer to keep people in line at our hospitality suite though. Maybe Phyl can do it. She's pretty good at putting things and people where they're supposed to be! :D It's a good thing she has us around to help her earn that big moderator salary she's raking in!
Lori
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Phyl
Did you just smack me several posts and a page or two back? Why I think admission should be charged for the Jan and Lori Show. What an unique combination of the droll and straight. The Smothers Sisters. Rowan and Martini. The Blues Sisters. As long as it's down here in the Community basement, let er rip ;).
Just had a great get together today with Nancy (NL) and Lainie. I don't know how to better say this but I have never met an AN patient that I didn't adore. Nancy, Lainie, Kathleen. I am in awe. There is no better way of saying that. I am in awe.
David
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David -
I can't wait to meet you in person - it's been a long time since I've been adored! :D
Seriously, it's great you are getting to meet so many ANers in person. I'm jealous. Guess I'll just have to wait for the Symposium.
BTW, if Phyl doesn't agree to the bouncer job, maybe Lori & I can hire you ;)
Jan
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Phyl
Did you just smack me several posts and a page or two back?
Yeah she did. Take it as a good thing; it means you're in now - you've been initiated. ;)
Steve
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stop egging them on! geesh! ;)
Phyl
Did you just smack me several posts and a page or two back?
Yeah she did. Take it as a good thing; it means you're in now - you've been initiated. ;)
Steve
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I thought egging us on was part of Steve's job ???
Jan - "initiated" a few times ;)
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When I first found the forum in my early research days, I expected to find lots of information and first hand experiences of other AN patients. It didn't take me long to realize I'd found something even better...a compassionate, supportive group of people willing share so much more than their AN experiences. The forum became a place I continued to visit not only for information, but camaraderie and entertainment (the Jan & Lori show ;)) as well.
Even though I'm somewhat new to postie status, I do feel a strong desire to give back to others beginning the same journey. So, like many posties, I'll continue to chime in whenever I feel I have any helpful info to offer. :)
I have to agree with David that every AN patient I've met, both on and off the forum, have been amazing people!
And Steve, I think the "preposties" term is catching on!
Nancy
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For me, I feel like I have researched, studied like crazy, and have had a really hard time declaring my major...
I think prepostie Nancy Drew has my favorite line of the whole topic. :D
Steve
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I'm liking "prepostie" - good thinking, Steve!
Prepostie Cindy
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Postie Marci here, reporting! Nothing is going according to plan, which is predictable, and I continue to be impatient (also predictable), BUT, I have now worked for two consecutive weeks with no major disasters. Side-effects of surgery are driving me batty but I'm taking drugs when needed. Back to the doctor on October 7 to have my hearing checked (I think it's mostly there, but who knows) and I plan to pepper him with questions I've been saving up. I hope he's had his Wheaties.
Best,
Marci
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I hang around to make up silly words like "wonkyhead" and "postie" and take you scallywags on vitual Caribbean cruises when you are feelin' funky! Why else would I hang around wiv a bunch o' landlubbers like you? Jeez!
Besides whose gonna take care of the wenches and scallies who end up with headaches? Those suckers hurt! The docs are stumped! I bin there. Gotta get the right help! AAAAARRRRR!!!!!!!!!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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Hey Steve,
Glad you liked my line. My first day of class is Oct. 7th. Not dropping out. And, when they pull me out of that machine, I can't change my major. Done deal. Thank goodness for the scholarship (insurance) otherwise don't know what I'd do!!!
Prepostie,
Nancy ;D ;D ;D