Re: My Facebook Phobia

October 27, 2011

I just requested to join but I'm not sure how much time I'll have to keep up with it. I just started online courses this week to get my Master's Degree in Professional Counseling. I am also seeking employment and once I find a job I'll have even less time!

PeggyOn Thu, Oct 27, 2011 at 5:19 PM, <elizabethrgonzalez@...> wrote:

Tricia, you wrote about the shock of seeing a new surgeon and getting a

recommendation for more revision surgery to correct a failed fusion. I

hope you have found someone good for a second opinion by now. You are so

right not to rush into major surgery after consulting with just one

doctor. I personally find it amazing that people hear such different

things from different surgeons -- it seems to be a reflection of how

little we (that is, our medical advisors) actually know about our spinal

deformities after all this time.

In writing about your experience, you mentioned in passing:

> I already posted this on facebook page but not sure if everyone is a

member there.

You and me both! I can't really tell how many of us are involved with

both groups, or " who is reading what and where. " I guess it's no secret

that I am, ahem, sort of ambivalent about the whole Facebook idea --

even though I finally decided we'd better get on the bandwagon and open

up a Feisty outpost at FB. , who is such a trooper, spent a great

deal of time and effort setting us up over there, and I am very

grateful. I am also grateful that has been checking up on that

group and has gone in and done battle in response to weird or

questionable posts. That has given me the luxury of playing " diplomat "

and trying to find some good in people's wilder comments, although I am

wondering now if I should maybe go stomping in there in a more assertive

way. I am still fuming over one post I read late last night which I

felt I could not begin to question or correct -- the person seemed so

sure of what she was saying, although most of it made little or no

medical sense to me; and because she was in that vulnerable,

scared-witless phase we've all been through with our flatback, I

chickened out and did not really question any of her highly questionable

facts. I am torn between alienating however few people may have signed

up for the Feisty Facebook group and spending way too much time

correcting all the misperceptions and nonsense that may be getting

posted to that group.

I wish I could say the Facebook group has the knowledge, quality, and

class of this Group. Of course it has taken us more than a decade

to get where we are now, with a nice balance of opinions thanks to

active, well-informed members who are glad to counterbalance an

occasional questionable post. I am frankly having trouble reading the FB

posts at all. That is one reason I do not monitor the site nearly as

closely as I probably " should. " (Another reason is that Facebook is

still making me go through an elaborate signup each time I try to go

there, filling in the " name " of my computer, etc.)

I guess I am sending out a kind of appeal to the rational and articulate

members of this group who may not have participated much at the Facebook

site. Can I enlist any of you outstanding and knowledgeable Feisty

members to help us to monitor that group a little better? I'm afraid the

only way we can really manage or moderate the group is for more of us to

look over the comments and jump into the discussion when we read

something truly off the wall. There is no way to impose any rules or

recommendations on the group, and it seems like kind of a free-for-all

--whoever posts the most comments automatically dominates the

discussion. I have to admit I am pretty irritated at the seeming

overload of ignorance I am seeing over there. (Or maybe I just chose to

make my last " visit " on an unusually bad day for common sense and

reliable medical facts?)

Any input on this situation? Does anyone think the Facebook Feisty

group might have been a mistake? Do most people prefer posting at the

Group? I guess it's obvious that I'm still kind of at a loss about

this whole social media thing. Help, help!!

Thanks,

October 27, 2011

Hi ,

I really like the Facebook site, and I got some good support and ideas regarding

an up-coming MRI to diagnose my hip pain. is doing a fine and patient

job. I like the immediacy of responses and the ability to almost have a

conversation. I agree there are some wildly different opinions and there seems

to be a lot of misinformation. I did correct some of the info one time, and I

felt that I was respectfully acknowledged as being more factual. It would be a

huge job, however, to monitor all of it. Perhaps some frequent reminders that

these are people's opinions and not medical facts? I will give it more thought,

as I think it has value for us Feisty Facebook Fanatics

>

> Tricia, you wrote about the shock of seeing a new surgeon and getting a

> recommendation for more revision surgery to correct a failed fusion. I

> hope you have found someone good for a second opinion by now. You are so

> right not to rush into major surgery after consulting with just one

> doctor. I personally find it amazing that people hear such different

> things from different surgeons -- it seems to be a reflection of how

> little we (that is, our medical advisors) actually know about our spinal

> deformities after all this time.

>

> In writing about your experience, you mentioned in passing:

>

> > I already posted this on facebook page but not sure if everyone is a

> member there.

>

> You and me both! I can't really tell how many of us are involved with

> both groups, or " who is reading what and where. " I guess it's no secret

> that I am, ahem, sort of ambivalent about the whole Facebook idea --

> even though I finally decided we'd better get on the bandwagon and open

> up a Feisty outpost at FB. , who is such a trooper, spent a great

> deal of time and effort setting us up over there, and I am very

> grateful. I am also grateful that has been checking up on that

> group and has gone in and done battle in response to weird or

> questionable posts. That has given me the luxury of playing " diplomat "

> and trying to find some good in people's wilder comments, although I am

> wondering now if I should maybe go stomping in there in a more assertive

> way. I am still fuming over one post I read late last night which I

> felt I could not begin to question or correct -- the person seemed so

> sure of what she was saying, although most of it made little or no

> medical sense to me; and because she was in that vulnerable,

> scared-witless phase we've all been through with our flatback, I

> chickened out and did not really question any of her highly questionable

> facts. I am torn between alienating however few people may have signed

> up for the Feisty Facebook group and spending way too much time

> correcting all the misperceptions and nonsense that may be getting

> posted to that group.

>

> I wish I could say the Facebook group has the knowledge, quality, and

> class of this Group. Of course it has taken us more than a decade

> to get where we are now, with a nice balance of opinions thanks to

> active, well-informed members who are glad to counterbalance an

> occasional questionable post. I am frankly having trouble reading the FB

> posts at all. That is one reason I do not monitor the site nearly as

> closely as I probably " should. " (Another reason is that Facebook is

> still making me go through an elaborate signup each time I try to go

> there, filling in the " name " of my computer, etc.)

>

> I guess I am sending out a kind of appeal to the rational and articulate

> members of this group who may not have participated much at the Facebook

> site. Can I enlist any of you outstanding and knowledgeable Feisty

> members to help us to monitor that group a little better? I'm afraid the

> only way we can really manage or moderate the group is for more of us to

> look over the comments and jump into the discussion when we read

> something truly off the wall. There is no way to impose any rules or

> recommendations on the group, and it seems like kind of a free-for-all

> --whoever posts the most comments automatically dominates the

> discussion. I have to admit I am pretty irritated at the seeming

> overload of ignorance I am seeing over there. (Or maybe I just chose to

> make my last " visit " on an unusually bad day for common sense and

> reliable medical facts?)

>

> Any input on this situation? Does anyone think the Facebook Feisty

> group might have been a mistake? Do most people prefer posting at the

> Group? I guess it's obvious that I'm still kind of at a loss about

> this whole social media thing. Help, help!!

>

> Thanks,

>

October 29, 2011

Hi, .

I share your Facebook phobia. I groaned when I read that a flatback page was going to be opened on Facebook. I thought "Oh no, we're going to lose our group!" I hope I'm wrong about that!

I have a Facebook page, but I go to it as little as possible -- probably once every couple of months. I just can't stand it!! I think what bothers me most is that it's a free-for-all. There doesn't seem to be any structure to the pages. I can't delete individual posts that I don't want (at least I don't think I can), I can't organize the posts, and I just hate that I have to sign on to it to see anything. I have Facebook notices piled up in my email mailbox that I haven't responded to because I just don't feel like having to find my user id and password to sign on to Facebook. I also feel that Facebook pages are not as "safe" as the group. That may not be true, but with Facebook management playing around with its privacy policies on a regular basis, I just don't feel comfortable talking about personal medical issues on Facebook.

I love our regular group. I get daily digests that I can read without having to sign onto anything but my email account. I can save things, organize them in folders. I can find an entire stream of a conversation/topic if I want to. I am very happy with the current system. I have not looked at the flatback Facebook page yet mostly because of the problems you cited in your post.

I have to admit part of my Facebook phobia may come from my age -- 58. And also because I like things to be organized and structured, which Facebook is not. Thanks for letting me rant a bit about my gut-level distaste for Facebook. Please, please don't ever move everything "feisty" over to Facebook. I love our feisty group!

Pat

November 4, 2011

Hi,

I haven't posted in a while. My name is Carol, New york, flatback surgery at

NYU in 2008. I am still doing very well. Little to no pain any more, and I can

walk very well now.

I just wanted to second the notion of the need for this group. I am on

facebook, but the format is so different. I would not be comfortable posting

important messages on facebook like I would here. This group helped me gain

information, and courage as to the different aspects of flatback syndrome, and

helped me find terrific doctors who I still hold in great esteem.

I don't believe this would have meshed the same way for me had it been in the

Facebook format. Facebook is fun, but it is more of a social media that is for

snippets of things going on in peoples lives. Not for the in depth discussions

like we share here. I really hope the Feisty group continues. It has been an

invaluable resource to me over the years, and one in which I hope will be there

for us " Feisties " in the future.

Shout out to . One of the best old time Feisties of us all. God

Bless.

Carol

Still doing well in NY, (almost 4 years post op flatback surgery.)

>

> Hi, .

> I share your Facebook phobia. I groaned when I read that a flatback page was

going to be opened on Facebook. I thought " Oh no, we're going to lose our

group! " I hope I'm wrong about that!

> I have a Facebook page, but I go to it as little as possible -- probably once

every couple of months. I just can't stand it!! I think what bothers me most

is that it's a free-for-all. There doesn't seem to be any structure to the

pages. I can't delete individual posts that I don't want (at least I don't think

I can), I can't organize the posts, and I just hate that I have to sign on to it

to see anything. I have Facebook notices piled up in my email mailbox that I

haven't responded to because I just don't feel like having to find my user id

and password to sign on to Facebook. I also feel that Facebook pages are not as

" safe " as the group. That may not be true, but with Facebook management

playing around with its privacy policies on a regular basis, I just don't feel

comfortable talking about personal medical issues on Facebook.

> I love our regular group. I get daily digests that I can read without

having to sign onto anything but my email account. I can save things, organize

them in folders. I can find an entire stream of a conversation/topic if I want

to. I am very happy with the current system. I have not looked at the flatback

Facebook page yet mostly because of the problems you cited in your post.

> I have to admit part of my Facebook phobia may come from my age -- 58. And

also because I like things to be organized and structured, which Facebook is

not. Thanks for letting me rant a bit about my gut-level distaste for Facebook.

Please, please don't ever move everything " feisty " over to Facebook. I love our

feisty group!

> Pat

>

November 4, 2011

Hi, Pat --

Thanks for your salient comments re Facebook. I coudn't agree more, and

I couldn't have said it better!

And a shout out to Carol, too -- nice to hear from you again, and glad

to know your own thinking on this whole general subject. It's always a

pleasure to get your posts, Carol.

Hear ye, hear ye: There are NO plans to reduce or eliminate the Feisty

Group!

Best,

>

> Hi, .

> I share your Facebook phobia. I groaned when I read that a flatback

page was going to be opened on Facebook. I thought " Oh no, we're going

to lose our group! " I hope I'm wrong about that!

> I have a Facebook page, but I go to it as little as possible --

probably once every couple of months. I just can't stand it!! I think

what bothers me most is that it's a free-for-all. There doesn't seem to

be any structure to the pages. I can't delete individual posts that I

don't want (at least I don't think I can), I can't organize the posts,

and I just hate that I have to sign on to it to see anything. I have

Facebook notices piled up in my email mailbox that I haven't responded

to because I just don't feel like having to find my user id and password

to sign on to Facebook. I also feel that Facebook pages are not as

" safe " as the group. That may not be true, but with Facebook

management playing around with its privacy policies on a regular basis,

I just don't feel comfortable talking about personal medical issues on

Facebook.

> I love our regular group. I get daily digests that I can read

without having to sign onto anything but my email account. I can save

things, organize them in folders. I can find an entire stream of a

conversation/topic if I want to. I am very happy with the current

system. I have not looked at the flatback Facebook page yet mostly

because of the problems you cited in your post.

> I have to admit part of my Facebook phobia may come from my age -- 58.

And also because I like things to be organized and structured, which

Facebook is not. Thanks for letting me rant a bit about my gut-level

distaste for Facebook. Please, please don't ever move everything

" feisty " over to Facebook. I love our feisty group!

> Pat

>

November 4, 2011

I agree with everything said in this post.

Facebook is not a good forum for Flat back syndrome. I wouldn't feel safe or

good about posting my medical problems there. Please keep the Feisty site here

on . It has always served us well here.

thanks again.