Facebook

[navydad]

Anyone on that,, ?

[eyeamdry]

Yes, I was also thinking of asking that.  I hate to give our our real names.  Maybe there could be an avatar for Sjogrens World and we just "join" on Facebook like we do other things.  Our real name, or the name we use on FB would show.

Anyone who wanted to remain anonymous would obviously not take part.  I think it would be fun and I found another group on there, but nothing as ood as this.  I even gave out the link name a couple of times.      Lucy

[lesmom]

I am on FB. But find this a special bonding site because there are only certain people that get what it is that we are dealing with. There is only so much that I would put on there because of the people that I work with and other people that would have access.

[eyeamdry]

Good point Les's mom.  But, others who might want to befriend each other on FB, still could.

You have to remember when it's on there.everybody reads it.  I am surprised at what people do put on there.  Lucy

[Epson]

Lucy I agree, I have never posted on FB, I only use it to retrieve photos from my brother, I just don't feel it's safe to let everyone and their brother read about you.

[Billydude]

I use facebook alot.   There is even a Sjs group on Facebook.

[Scottietottie]

I use FB a lot too!   

[inga]

I am on Facebook but am only open to my family and friends.  It has privacy settings.  It is nice because I can get pictures of grandbabies and keep up with news without my kids having to always call me....they do anyway, but, it is good to see things on Facebook.  Make sure you keep your settings at private.  That said, there is really no privacy anymore.

[Blue Kat]

I use facebook alot.   There is even a Sjs group on Facebook.

I'm on Facebook and I have joined the SjS group on there, but I don't post on it...I just prefer this place for some reason.   

[ruby52]

I am on Facebook too but with family and friends.I didn't know there is a SJS group.I check messages and updates but everybody I know is on there playing those games.They always send me messages wanting help with their farms,cafes,aquariums,cats and such.
I quick get off now whenever I see names of people signing on lol.I just am not interested in any of that.I can't concentrate long enough and would rather we sent messages.Guess I'm getting old.
                                                                                            Ruby

[Jesse88]

I'm on FB too and also on two of the Sjogren's sites.  I find there are very nice people over there too.   

[beej]

Since all the posts on this forum are open to search on the Internet, I hesitate sometimes to be very specific in what I write.  That is how I found this forum, a search with google took me straight into the group and I could read any thread I wanted.  It did make me leery of joining, but I decided that it is more important to have a place to come for companionship and answers than to worry what I reveal.  I'm on FB, but I'd not recommend it for members of this forum because it is too flaky and has too many changes of web navigation that make it pretty challenging to follow, sometimes.

[Scottietottie]

As far as I know, there is more than one SjS group on FB about SjS. Ome was set up by a woman who used to post here often.

[Jesse88]

Yes, I am on two of them, both of which I believe are the links you listed.  Thank you!

[Joe S.]

While I am on Facebook I try to avoid spending much time there. Skype is my new toy.