Facebook Page Suggestions

[Middlesista]

I have read a few posts about Facebook pages for GPA and there seems to be a few - wondering if folks could suggest which one(s) they find most helpful and informative?

Thanks!

[Birdie]

I have read a few posts about Facebook pages for GPA and there seems to be a few - wondering if folks could suggest which one(s) they find most helpful and informative?

The one close to you. Or just drag them all here.

[Alysia]

This forum is the best place on the globe for weggies.

[debra]

My sista in the middle, I gotta say although people aren't saying there leaving or anything, I just don't get it, with why someone would go further than here? Maybe its just me, since I am not a Facebook person, the regular I call fakebook, the groups I don't call anything. I saw it a couple times and it can't hold a candle to this group... However, I appreciate people have different likes, so its cool. This group is to me more family, supportive, professional, well except my thread, but that's ment that way. It's also more intimate, and just overall better here, in my opinion... What is it that you find lacking, Mr.c, and suista? Cause maybe whatever it is, we could try to include it here? Sista, sorry for that little mishap, can't correct sometimes, as u may know.... Any way, I strayed once, and when I came back, I felt somewhat defiled..... Even guilty......I almost couldn't post keeping eye contact.... Committing whoredom with other groups.... Deb.

[Middlesista]

This group is the best and I am thrilled I found it but I did not think this was a Facebook page and was reading a few posts were folks mention Facebook so thought I would ask for recommendations to perhaps augment the data here. I know this forum is amazing and I appreciate all the support and information. You are correct Deb - Facebook can be trivial however sometimes there are pages set up that are informative and helpful - just have to be selective

[debra]

My sista in the middle, hi! I've become somewhat attached to you, so don't want you to leave.... Actually I'm aware people go there, some like it some don't. Personal preferance, I'm just not a big fan of the book. Im also not a big fan of bugs, some people dig bugs,ant farms,ect. I however do not... I will give a shout out though to the fact they work together, carry their dead out of their little houses,store food, ect... It is pretty amazing, and they have no leader, this they just do as a team.... So, after all this? Don't leave sista... Visit there, but stay here... That rhymed... Deb. Who is for sure nuts.

[annekat]

I joined FB to reconnect with relatives and friends in other parts of the country as well as those geographically closer with whom I could share tidbits of funny stuff or important or interesting information. I was already on the forum and started to become aware of the FB groups for WG and other forms of vasculitis. I joined a few, but never "moved over there".... Since on FB anyway, I've happened upon discussions in these groups that I wouldn't have had here, and gotten to know new people. But I'd never see it as a replacement for the forum. For example, there is a group for my local region, where I've met some people who aren't on the forum, or have other forms of vasculitis, and we are all supportive of each other as "vascies". Then there is the Vasculitis Social Group, a group for artists and crafters with vasculitis, and a group for vascies of all faiths to discuss that side of things with mutual tolerance. There are a couple with frequent posts about scientific studies and such as well as just normal conversational and humorous stuff. A new one has started by a forum member who wanted to start his own group. It has been pretty active with info about diet and natural supplements, not as replacements for our meds. I just get email notifications when there are new posts in these groups, which I can ignore and delete or go to as I choose, as there is usually a title which indicates what the post or thread is about. So it is not a lot of work, I still mainly check the forum and just happen upon things in the groups. I would just do a search of WG or vasculitis groups on there and see what sounds interesting, and read a few posts if that is allowed without joining. Some are more open that way than others. I'd give more specific names but can't remember them right now... I'll keep you in mind for a heads up when I see a good one, and I think I'm currently your personal FB friend as well. I've kept in touch on a personal level, rather than through groups, with several who rarely come to the forum anymore, for what ever reasons. I hope this helps.

[debra]

Anne! Hello there.... Anne you gave details! And good ones, hell i actually thought of going there. Anne, why encourage them to go a whoring, on other groups? Anne what if they never come home!!! Anne, what if Birdie sees this? They will steal my people! Deb.

[Birdie]

Anne, what if Birdie sees this? They will steal my people! Deb.

Bye bye Birdie!

[debra]

Ha, ha... Real quick, clever, as usual..... So funny.... Deb. Xo

[annekat]

Anne! Hello there.... Anne you gave details! And good ones, hell i actually thought of going there. Anne, why encourage them to go a whoring, on other groups? Anne what if they never come home!!! Anne, what if Birdie sees this? They will steal my people! Deb. FB is what you make of it or don't make of it. You can always delete yourself from people and places that are not doing a thing for you. You just be very careful about who you accept as "friends" . Some people sign up and then never participate. I just got a thank you for a birthday greeting to my brother in law 9 months ago. That is OK. No expectations. A lot of the people who used to be on here and are now on there are not even on there very much. They got what they needed here, are doing OK with their Wegs, and just spend their time doing other things than being on the computer.

[debra]

Anne, what could be better than here, with you? Seeing you're beautiful face and talking with you, and others makes me happy. Why would I stray? I'm a very simple person. I hear ya though.Everyone has their own thing. I can dig it, Anne...... Xoxo

[annekat]

Anne, what could be better than here, with you? Seeing you're beautiful face and talking with you, and others makes me happy. Why would I stray? I'm a very simple person. I hear ya though.Everyone has their own thing. I can dig it, Anne...... Xoxo Trying something new isn't always "straying". And it is perfectly OK not to go there! No expectations.

[debra]

Nay, I'll stay here with you Anne. And if you're over there, I will be here waiting on you're return... Anne, New things aregreat, I agree, but so are some of the old... When you find what you didn't know, you were looking for, why look elsewhere? Me!

[annekat]

Nay, I'll stay here with you Anne. And if you're over there, I will be here waiting on you're return... Anne, New things aregreat, I agree, but so are some of the old... When you find what you didn't know, you were looking for, why look elsewhere? Me! They are two different things, not mutually exclusive. Not everyone is a Weggie, so wouldn't be on here. I barely knew my girl cousins and now know them a lot better, plus stay in touch with my lovely aunt and various other friends and relatives. if your whole world is Wegeners, then here is the best place to be. Now I have to get ready to do some other things, off the computer.

[debra]

Agreed Anne........ Good for people who have family..... WG, shouldn't be a major focus. Just something you deal with. Which explains the crazy thread, over there. Klondike bars and bedbugs, and now bewitched...... Me. Xo

[Middlesista]

... I'd give more specific names but can't remember them right now... I'll keep you in mind for a heads up when I see a good one, and I think I'm currently your personal FB friend as well. I've kept in touch on a personal level, rather than through groups, with several who rarely come to the forum anymore, for what ever reasons. I hope this helps.

Thanks Anne -I appreciate it!

[annekat]

Agreed Anne........ Good for people who have family..... WG, shouldn't be a major focus. Just something you deal with. Which explains the crazy thread, over there. Klondike bars and bedbugs, and now bewitched...... Me. Xo
True, in the FB groups people wander off topic, too, and there's no Putin. A lot of the members of the groups are my personal "friends" independently of the groups, and we share cool photos, funny stuff, and what's going on with our families and pets, trips people have taken, etc..... so its not all about WG all the time.

[debra]

Well there you have it Anne, nothing to share.... Ok, so I'm even more bummed out than previously.... I love you Anne..... Deb.

[annekat]

Well there you have it Anne, nothing to share.... Ok, so I'm even more bummed out than previously.... I love you Anne..... Deb. I often share things that other people have shared, that didn't originate with me. It's easy to overlook things you aren't that interested in, and just share or comment on the things you can get into. No one expects you to respond to everything,

[annekat]

I went into town to pick up meds and some other stuff and am pretty wiped out... due for some down time..... later, XXOO.

[debra]

Anne, I hear ya, its just not me, to even care to comment on people's pictures and stuff, I just don't get it, its fine for others, I'd rather read or something, to keep my brain alert! Or trying to reach that goal! My sister inlaw, spends all day, fakebooking her people...... You like tea, I drink coffee, that's what makes life interesting..... Me.

[annekat]

Facebook is not for everyone and no one is trying to push anyone into being there. Middlesista was asking about groups because she is probably already on FB with friends and family and would like to know what else might be recommended. Some of the groups are worthwhile if one is on there already, there are good people on them, and it doesn't mean one is choosing those groups over the forum.

[debra]

I know this, Anne... I'm not knocking anything, see my other post, were I say this. I was originally joking, but I need to learn, to leave that for Birdie........ Me....

[annekat]

I know this, Anne... I'm not knocking anything, see my other post, were I say this. I was originally joking, but I need to learn, to leave that for Birdie........ Me.... No problem, go ahead and joke, I can learn not to take everything so seriously.... Birdie's jokes are not always that easy to get, either....

[debra]

Anne, you kill me..... Well if you don't get his, I'm sh** out of luck! Do have to give Birdie a shout out, he's pretty damn funny..Anne seriously? Mine I can see, as again not very humorous at all, but Birdies a trip.... Interesting though, Anne... Deb. Xo xo.

[annekat]

Anne, you kill me..... Well if you don't get his, I'm sh** out of luck! Do have to give Birdie a shout out, he's pretty damn funny..Anne seriously? Mine I can see, as again not very humorous at all, but Birdies a trip.... Interesting though, Anne... Deb. Xo xo. I get most of Birdie's, when I can tell he is actually joking, which is usually. He does have a serious side, too, though, as do you. XOXO

[Birdie]

I get most of Birdie's, when I can tell he is actually joking, which is usually. He does have a serious side, too, though, as do you. XOXO

I originally read posts here for days and days... it was all doom and gloom. Doom and gloom breeds doom and gloom... Everything is serious about Wegener's, but that doesn't mean you have to be gloomy... we're all here now, so pull heads out of armpits and smile damnit. Ooops, sorry, didn't mean to get so serious...

[debra]

Birdie, healthy, happy new year... You weren't supposed to see this thread! Now, another one of my children, will get idea's, and leave me to go a whoring..... Don't do it Birdie, don't be tricked.. And when and if you choose to return, you also will feel defiled, and no longer be able to post, keeping eye contact.... Birdie, keep you're crazyness, with you're seriousness... It's perfect...... Deb, with love... Xo Xo Oh, forgive my typo, can't fix whole words, just a letter, here and there.