ANA Discussion Forum
AN Community => AN Community => Topic started by: Puppylove on January 06, 2011, 11:54:20 pm
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Is anyone a member of any facebook groups relating to AN's? I've seen a handful, and I was curious if any of them are good. I'm not sure I want to join one, but I'm thinking about it. Is anyone a member of the Acoustic Neuroma / Vestibular Schwannoma Group with over 1,000 members? It seems to be private, so I can't really tell how active it is.
Thanks!
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I am a part of that group and there are a few other forum members as well.
Anne Marie
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Same here. Alot of us are 'friends' on f/b. I find that is great as I dont frequent the ANA site often but do keep in touch with others on f/b
JO
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I am on both Facebooks AN sites but actually don't look at them very often. Several of us are on regular FB and enjoy those who post. I have a feeling there are some who are not here but are regulars on the AN ones. Probably depends on how much time one has to be on them. Cheryl R
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I am on the the personal FB site but not the other one. Most of my corresponding on FB is actually AN friends! Join the fun on the personal FB-would love to hear from you!
Maureen
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I think I may be part of that but NEVER hear from it or go on it. Just friends with a lot of my AN buddies from here!
K ;D
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I'm on some of the facebook groups too, but don't have a lot of AN f/b friends. If anyone wants to add me as a f/b friend send me a private message.
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I too am on FB AN but do not go on it as often as I would like I did fine some very nice people on it that we still keep in touch....
Best Wishes,
Pat
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If anyone wants to add me on facebook, my name is Leslie Schleider Hyman.
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I did search on Facebook and found AN groups. I made a decision to keep this aspect of my life off Facebook for now. Although I wouldn't call my status a "secret", I kind of feel that I don't need to post my AN status there. A lot of my Facebook friends are from the distant past and we really have very little contact. I just didn't want to advertise to the world. Plus I'm not really happy with the lack of privacy on Facebook. I wouldn't be too thrilled if someone could put my name and acoustic Neuroma in a google search and get hits. I've been in IT for over 20 years and I understand how all the data mining works, etc. I don't want the AN status to impact me negatively any more than necessary. Does anyone else feel similarly?
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How funny...I NEVER even thought about that. I am on FB to be in touch with many, many friends - some even from elementary school. I certainly don't see my AN as "owning me" - that is a part of me, but CERTAINLY doesn't define me. I rarely EVER post about my AN (maybe once about being SSD & even that was a funny observation that i would have put whether I had any AN "friends" or not). I feel like I know certain things about my FB friends from here, better/different, and I know that they probably know me better (I'm even more blond and goofy) and I put lots of pictures of funny things or my kids. I have a blog (that I haven't kept up very well) so my life is an open book. I know that some people would disagree with me doing that and that is OK. I have my FB all "private" but I am not naive enough to think people can't get around that. HOWEVER, I also know that if someone wants to find out about you, they can find out anything that they want, whether you are on FB or not OR whether YOU have a computer or not!! :o
K ;D
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The regular just plain Facebook doesn't mentions ANs unless you write about it. The AN groups are a whole separate type and one must join that too so the friends on regular FB won't know you are on a AN one unless you mention that on your profile. I am a member of all of them and it does not show on my profile. So you can be on a regular one and AN one and the non AN friends will not know unless they look specifically which is doubtful. Does this make sense? I am going by looking at my profile and seeing no mention of the AN ones. Cheryl R
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I have been on Facebook for a long time but have consciously chosen to keep it as private as possible. I use it primarily for family, some close school friends, and my church family. I have never explored the AN groups on it. This Forum is so vast with many posters/friends that I see no need to open myself up to being more exposed on Facebook.
Clarice
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I'm not on Facebook based on (a) privacy concerns and, (b) lack of time to devote to another internet website. However, my wife is 'on' Facebook and enjoys it. (PM me for her Facebook moniker) She has urged me to sign up - but I've resisted and will continue to do so until or unless I can find more time to devote to the internet, which isn't likely. However, even if I registered on Facebook, I doubt that I would mention my AN experience. Not because I wish to keep it a 'secret' but because it was almost five years ago and doesn't really have much bearing on my life, today. Besides that, I can discuss ANs right here with folks that I may be able to help in some way, as opposed to just relating a personal medical experience that most people don't really understand and so, haven't a lot of interest in reading about. Here, it's more like 'family' and my AN experience has some meaning to others that I might venture to counsel. Realistically, I probably won't be an active member of the ANA website forums indefinitely. If and when I give up my seat on the ANA Moderators Lear jet (not in my immediate plans) then I might consider becoming a Facebook member.....maybe.
Jim
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The issue isn't just what other Facebook users can see. Facebook sells your information to companies that data mine the internet. They make money by identifying you and everything about you. Once you put something on Facebook it's there forever, whether you delete it or not. Sounds like I've got a case of paranoia, I know. This forum is a little less accessible to the monsters.
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Facebook can be a black hole of time consumption. When I first got on, I was finding so many friends from high school that I hadn't seen, i felt like i was obssesed by it. Now my time is spent jumping on it for small segments of time just checking in. I also found some relatives. I'm not on it in an AN group, because I like all the people here so much! But a lot of the people here are my FB friends. But sometimes I get confused because they have different names.
I get irritated with FB sometimes... all the game junk scrolling by and other stuff. But it is so easy to see pictures of my friends frm here (way easier to post pics) and I've enjoyed getting to know the people from here better on FB.
I feel that this site is more 'helpful' than FB.. that is its purpose.
And I can't imagine the ANA forum without JIM as a moderator!!!
Keri
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I feel that this site is more 'helpful' than FB.. that is its purpose.
And I can't imagine the ANA forum without JIM as a moderator!!!
Keri
I wholeheartedly agree ...... as well as the other moderators!
As for FB, I long ago "hid" all of the game posts. As I recall you can mouse over a Farmville (or some such game) post and the word "HIDE" comes up. If you click on it you will no longer see those posts. Not my thing to play those type games. Now, Words With Friends is different (right, Kay??? :-*) ......
Clarice
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I wouldn't call it PLAYING, really...more like STOMPING REPEATEDLY and the crazy thing is, I keep coming back for more!!
K ;D
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Guys, this news story recently came up on Yahoo. I'm posting it because of it's relevence.
http://finance.yahoo.com/family-home/article/111722/what-your-facebook-profile-may-be-telling-id-thieves?mod=series-m-article-a