Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Myspace or Facebook?

Oh Brad,

That makes me sad but I TOTALLY understand...it would be each individuals choice if they wanted to be a member or not. Would not make a difference one bit. I think the facebook thing would be more friends, pictures and support but alot of fun. There are already 3 or 4 people here that I am friends with on facebook that are members here and I think it is neat.

My thinking is that it would be by invitation only or request because I think the group would need to be for fun, friendship and support and I wouldnt want any trolls or people that just wanted to cause trouble. It would be kind of like it is here if someone does happen to slip thru the cracks then you have the choice of deleting that person and then they would be out.

Facebook has groups for everything else from Elvis fans to Ice Cream fans why not an AS group?

Hugs,

Lisa

Hi Lisa,

Yes, if someone does start a group, it absolutely, positively, 100 percent MUST be a members only group; otherwise, I fear the group will be overrun by trolls and rendered useless.

I've done a search on ankylosing spondylitis on Facebook and there are a few groups there already, some seeming to be fairly active.

Brad

www.myspace.com/tierneybridge

barngoddess84@yahoo.com Bridget Brister

=)

I"ve joined a couple LDN groups on Facebook . . . I'm totally gonna spread the word

Brad - I have to agree with you that I've opened up on KickAS more than I ever imagined I would (ladies - you only have to read the women's forum to know that). I feel a tremendous trust in members, perhaps because they are all struggling like me and in a way that those who are always healthy may not understand. I have moments of panic because I've revealed enough personal details for casual readers who know me to identify me but I carry on believing that most people who read KickAS do so for very legitimate reasons - it's not exactly the place you want to hang out if you or your loved ones have no experience of AS or inflammatory arthritis.

Your personalities shine through here - I sometimes feel that I'm in the same room with you all.

I think I feel the same way as Brad & Wendy, that FaceBook is fun, and useful to learn about what's going with civilians, but KickAS is much more about these particular people here, and what's on our minds. The tools here don't get in our way, there aren't ads, you don't get harrased by emails that say "Bob has written on your wall! To see what Bob has written on you wall, click here! and then finally you do, and you see: "Hi, hows it goin?"

THen there is the problem, of getting a nice group of friends, and you all like similar things, you know, whatever, blowing up buildings or something fun. But now Aunt Sylvia wants to be your friend too. Now you realize that she is going to read all your postings about the beer party on Saturday. (Bad because Aunt Sylvia can drink a keg all by herself!) Or that girl you went to high school and you had the mad crush on she but hates you, is now a part of the group. I also can't stand things like click this button "I like this" or "I don't like this" What if I like 30% of it, and the rest is complete munkfish? Can I write that in?

And twitter of course, is just encouraging to have shorter and shorter thoughts, so pretty soon our brains will shrink to only 140 character thoughts, because what would be the point of longer?

It is really interesting to observe how societies recreate themselves in a new medium. Find ways to create hierarchies and that, a new class system, and keep other people down.

I think things are going to get really weird when we all have video chat on our phones!

I just wanted to add my new friends Whatever happens, happens

Thanks to all of my new myspace/facebook friends I appreciate the adds/acceptances and look forward to chatting more

sometimes ya just gotta take the risk and just jump in if ya dont like it dont join in but for me i found a niece i have seen or heard of since 1985 and we are gettin alone just fine.....for me its the thrill of the unknown its a challenge that i gotta take when the weather is bad and im housebound i turn to the net and bein able to talk to friends and family really perks me up.....oak

Good post, as usual Dow! I resisted Facebook for a long time, only joining when I had to if I wanted to find out how to attend a speaking engagement by the guy who runs one of my favorite websites called Postsecret.

(I'd like to interrupt this post for a brief word from our sponsors--in other words, I'm about to be a human advertisement for Postsecret! If you've never visited this site, I encourage you to do so with all my might! It is just an amazing place where you will experience human feelings at their purest--people send in postcards, usually hand-decorated or selected to fit a theme--upon which they have written one of their most personal secrets, something few, if any, people know about the sender. Trust me--one visit, and you will be SO hooked on it that you will instantly want more, which you can get at the bookstore in the 3 or 4 Postsecret books that are out. OK, end of commercial, back to my post.)

Ok, now where was I? Ah yes, joining Facebook. The Postsecret founder was speaking at nearby Eastern Michigan University, and there was no way to find out when or how to get tickets without joining Facebook, so join I did. Almost immediately I was astonished to find out many of the people in my email contacts list were already members. Not only were a ton of my former coworkers there, but friends from Michigan and even a couple friends from high school who I already stay in touch with via email and phone calls. Almost immediately I had 50 folks on my friends list, which, frankly, astonished me. At that point, I certainly thought I would only add a new friend every great once in a while, as I couldn't imagine many of my other friends signing up, but then I discovered the high school alumni search feature and bam, I was in touch with some old friends I hadn't spoken to in 15-25 years. And, I got lucky--they were all people I actually wanted to talk to again! (I have since had to decline the invitation of one person from my high school for the simple reason that we never talked at all when we were in school; no snobbery or anything going on here, it's just that we had a big class of over 400, and I simply did not know everybody. I simply do not see the point in adding someone who you never talked to, and unlike some of my friends, I have NO problem turning down a friend request if it's someone I don't feel I want to be in touch with.)

Since that initial burst, I bet I've added a couple new friends every week. Some have been friends of friends who I've gotten to "know" by reading their responses to items our mutual friend has posted, others are simply folks from every chapter of my life who just recently decided to join. The cross-section I have now is fairly amazing: there's a friend I grew up with in my first neighborhood in my old hometown, from which I moved away when I was 13; there's all those ex-coworkers, many of who are the wittiest and funniest people I've ever met, meaning I just love being in touch with them and thus feeling less out of the loop; there's people I knew well back at U of M, including one woman who was one of my closest friends in the world before we just lost touch about 5 years after we graduated--she's one of my favorite finds on FB, and she feels the same way; can't forget my relatives, from my brother and niece to my ex-sister-in-law, all of who I felt the most "weird" about adding for the very reasons you mention Dow, but have really not had any kind of problem with any of them; and oh, let's see, there's poker buddies, friends of friends I knew at U of M and in the years immediately after graduation, my high school prom date (a great person!), and even the love of my life, the woman who is unquestionably my soulmate. She joined after I told her how much fun I was having, and while the Facebook experience is a bit different for her, I think it's been fantastic for her because she was feeling rather isolated in her day-to-day existence. I'm sure I'm forgetting some folks, but you get the idea here. I'm now up over 110 friends, which just astonishes me--I wouldn't have guessed there were that many people I even *wanted* to be friends with, let alone was happy to talk to! LOL

Yes, there are a lot of annoying things too, like the constant app invitations and the horrid new redesign (thank goodness they did listen to their users and roll back some of the more annoying changes), but those are a small price to pay for the enjoyment the site brings me. This could change over time, especially if some of my friends start to slip away, something that is bound to happen as the years pass and the next big thing comes along. If and when that happens, I'll roll with the punches and adapt, as we all know you must do when using the net.

One thing I will NOT do, however, is join Twitter. Ever. I totally agree with your assessment of that site, Dow, and cannot believe that the entire point of that terrible Facebook makeover I mentioned above was to make the site more like Twitter. Personally, I cannot imagine a more ridiculous site to emulate, and if the powers that be had not undone some of the changes, I was seriously considering just shutting down my Facebook page. Luckily, it did not come to that. The biggest problem I see with Twitter, if I understand things correctly, is that your friends can't even respond to your "tweets" (ugh--just saying that makes me shudder in annoyance!). Isn't the whole point of social networking to foster the give and take between people so that fantastic lines of communication are opened? To me, if those lines are totally one way, and you cannot get a dialog going as a result of something you post, then what Twitter offers is the perfect site for narcissists! (And I apologize to those of you who use Twitter and like it, or those of you who have to use it for work or school--I'm sure it has it's redeeming features, it's just not for me!).

Brad

That's just it oak--I totally agree with what you're saying, which I really clarified in my most recent response to Dow. I completely love what I've gained from Facebook, and it has become my second-most visited site (right behind good ol' KA, of course!). I did dive in headfirst, and I have thoroughly enjoyed re-establishing contacts with friends from college and high school, along with all the great coworkers I left behind when I took my disability retirement. That's what I was trying to make clear in my original post, but must have failed: I am not at all worried about adding my KA friends to my Facebook list because of what they might read about me there, rather, just the opposite is true. If I were to add my KA friends to my Facebook friends list, it is inevitable that AS and KA would be mentioned frequently on my profile page, and hence, on my friends' live feed page. Because of how I have completely opened myself up here at KA and exposed secrets that I've never told anybody, I really don't want my non-KA friends wandering over here to KA to see what's what at this site. I would be very easy for my friends to spot (totally forgot about the little matter of my picture being on here, the same pic I use on my FB profile!), and I really don't want the vast majority of them poking around in this part of my life. A select--very select--few, sure, no problem, but not my entire friends' list. This is my most private and most sacred space on the net, and hey, what can I say, I selfishly want to keep it to myself so that I can decide when I let my friends into this world and control how much they get to see.

I hope that clears things up, because I do totally agree with your "dive in" attitude toward Facebook. I have no doubt that by keeping my FB and KA worlds separate, I am missing out and making some good friendships even better, but to me, that is the price that has to be paid to keep KA to myself.

Make more sense that way?

Brad