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vdub
07-14-2011, 04:16 PM
The forum has 956 members. Of those, 480 joined but made no posts. Another 270 joined and made less than 10 posts. Only 200 people have more than 10 posts.

So, what happens to people who come by the forum, join, and them, I'm guessing, never come back, or, at least, they don't participate? Is it people who possibly have mild cases or are under total control or they don't have wegs at all and they are looking because a friend has it?

Maybe we are just the chronic whiners.... :-) Maybe we have particularly bad or interesting cases or we just enjoy sharing our experience to help out someone else.... Any theories?

Sangye
07-14-2011, 10:21 PM
It's an interesting number, but I don't see how anything can be gained by speculating. We have no idea the reasons and couldn't possibly know what another person is thinking.

Jack
07-14-2011, 10:30 PM
It would indeed be speculation based on no facts at all, but I guess that people join with the best of intentions of taking part but then find that the world of internet chat is not for them. Even my wife thinks that it is slightly odd to chat with people who you know so little about and have no close connection with. She prefers "real" friends.

Psyborg
07-14-2011, 11:05 PM
Probably slightly odd, but it would be difficult to find any group of Wegs patience this size otherwise as well :) In the end I feel like I've made friends here, even if it is of the virtual friend variety, at least its a real human on the other end.

mishb
07-14-2011, 11:09 PM
I haven't made many posts but certainly enjoy reading all posts and trying to gain knowledge of this ..... oh so wonderful....disease.
I didn't make any posts for months but read as much as I could. I would enter a random key word to search and then read every post from 2008 onwards.

I was actually reading some posts the other day and the forum showed as 105 people online with 4 of them being members .... I think this is more startling than the idea of a member not participating, at least they are still gaining knowledge.

I know my husband and my mum look on here and are not members but they are still learning. I guess a lot of families and friends of members are doing the same.

Chris G
07-14-2011, 11:21 PM
Many of us joined pre-diagnosis. I think it's very possible that many people joined thinking they MIGHT have wegs, but in the end, it turned out to be something less sinister (lucky buggers!).

Red
07-15-2011, 12:27 AM
I am here lol

vdub
07-15-2011, 01:28 AM
forum showed as 105 people online with 4 of them being members .... I think this is more startling than the idea of a member not participating
WOW! That is an interesting observation.....

NicShaf
07-15-2011, 03:31 AM
I think the family members theory is a valid one. I know my husband signed up for this forum first, and posted a couple things in the first weeks after my diagnosis. Now he just checks every once in a while, but never really posts anything b/c I'm the one asking the questions and posting thoughts and experiences. He will just read now for knowledge.

delorisdoe
07-15-2011, 03:41 AM
It's an interesting number, but I don't see how anything can be gained by speculating. We have no idea the reasons and couldn't possibly know what another person is thinking.


I spend 3 quarters of my spare time speculating all kinds of things. I can not help but to speculate-on everything.

Psyborg
07-15-2011, 05:09 AM
I think I spend 4 thirds of my time speculating :p

delorisdoe
07-15-2011, 06:26 AM
I am speculating that comment. lol. long day

Thakator
07-15-2011, 07:22 AM
Hey Dub - - - Don't know about the non-returners, but i will say that those of us who stay are not those who like to whine. In fact, given the severity of many of our predicaments, there's actually very little of that. And even then it's much more of a necessary venting process. Personally, I come to this site every day for education on a topic which has become rather central to my life (unfortunately) and I find it hard to imagine why a dxed Weggie or a Weggie caregiver wouldn't make it a daily ritual - - - the site, to me, is that important. The fact that we come to know a fair bit about the personality, the spirit and about other aspects of various forum members along the way is a nice bonus because we who wear the dx are, (after allissaid and done) brothers and sisters of a special sort. Ron

pberggren1
07-15-2011, 02:06 PM
Very well said Ron. I feel the same way.

mishb
07-15-2011, 02:08 PM
because we who wear the dx are, (after allissaid and done) brothers and sisters of a special sort.

Ron, this is a perfect quote and I second that, and I also agree with this being a daily ritual.

Thankyou for putting it in these words.

vdub
07-15-2011, 02:47 PM
Very good! We are indeed all in the same boat. And, you're right.... It's not whining, it's venting and ranting over frustration and uncertainty we deal with every day. The site is much better than paying to see a shrink.... I take away a lot more from the site than I give.... It's just part of my day anymore..

Rini
07-15-2011, 03:18 PM
I am here lol

HI! (me 2)


I think a lot of people end up not having it or get better and stop posting 4 a bit or just read and don't ever comment. I do know lots of people benefit from this sight even if we never get to talk 2 them and in the end that is kinda the hole idea anyway. I think some may be doctors who need to know more or like said earlier family. once people get an idea of what WG is they probably move on.

vdub
07-15-2011, 03:49 PM
I have often wondered if a few docs frequent the site. I hope they do as it will let them know how much we really appreciate the specialists who take care of us. All the people at SLC go way above and beyond the call of duty to meet my needs. They are just great! My path people are great too. They nearly hog-tied the courier so he would wait for my blood samples today even tho anothe courier was due by in about 20 minutes. Same with the imaging people. Everyone is just fantastic! So, yeah, I hope they read this.....

delorisdoe
07-15-2011, 08:03 PM
i dont think doctors visit this site ever.

freakyschizogirl
07-15-2011, 08:58 PM
I think you should realise those people who are never online and never post are stalkers! :ohmy:
Or Weggie groupies. :hug2:
Who knows?
lol

MCC
07-15-2011, 09:09 PM
I guess some people join and then recover and there seems less reason to post again.

Regarding the number of people browsing the forum at any one time, many of those guests are actually search engine bots gathering info - not sinister - just recording things for search engines like google.

renidrag
07-15-2011, 09:46 PM
I check with you guys every morning although I sometimes don't sign in. I am in remission and feeling pretty well right now and question if my input would be valuable to most. I did post today though, because I felt I did have something to add. I guess I am a stalker but I keep up on things every day. Like Jack's laundry issues and batman's condition. As far as Doctors visiting this site I believe her name is Sangye. I hope you all well and good things.
Dale

Sangye
07-15-2011, 10:08 PM
(LOL Dale, I was wondering if anyone would get that! :wink1: ) I love your posts, btw. You always have something to offer-- I admire that.

I enjoy getting to know everyone too, and feel as if I "really" know each of you. I understand why people who don't use social media think it's odd. It can be. But our little group is special. We know much more about each other than who's got inflamed sinuses or who's on rtx. Thanks to Jack, we even know where many members' washing machines are located. *still giggling* :laugh:

Hal
07-16-2011, 01:34 AM
I tend to browse the posts for the most part, and contribute if I feel I have something worthy to say that might help someone else.

Other than that, I am foccusing on trying to get my strength back, which is turning out to be harder, longer and a bit more frustrating than I imagined. It guess we really must learn to live within within our physical limits and let the body heal at it's own pace.

Cheers for now!

vdub
07-16-2011, 01:57 AM
I guess we really must learn to live within within our physical limits and let the body heal at it's own pace.
I think that is sooooo right..... When I was confirmed for the 2nd time, I seriously started reviewing my bucket list. I had to knock a few things off simply because I was no longer physically capable of doing them and I don't think the future is going to change that. But, it's a long list, so I have plenty of stuff to do.

freakyschizogirl
07-16-2011, 07:57 AM
I'd love to hear whats on you bucket list vdub.

vdub
07-16-2011, 09:25 AM
Well, scuba diving is one that has been crossed off the list. Another that will potentially be crossed through is getting a couple ATV's and heading across the Rockies. Still on the list; visit Russia, cruise down the Rhine, visit Duxford, UK, snorkeling in the Virgin Islands, snorkeling at BoraBora.

drz
07-16-2011, 12:33 PM
for education on a topic which has become rather central to my life (unfortunately) and I find it hard to imagine why a dxed Weggie or a Weggie caregiver wouldn't make it a daily ritual - - -

I had also speculated on why so few people became members and why so many left but think the above quote in one of the keys. If GPA or Wegs has become a core theme in your life and you are willing and able to discuss what that means to you, then you might be one of the few who share their thoughts here. Those who post a lot are probably also the type who enjoy the support they receive her.

I would guess that some people are lucky enough to have a milder case of GPA which did not change their a life a great deal so they might be busy leading their regular life. Some others are too sick to post or even check in and read the posts. Some may have computer or internet access problems that keep them off. Some may be too busy doing other things with face to face contacts and activities. Some may be phobic about social media things or computers in general. Some may come for help with a certain question and when they find the answer they leave. I suspect many are using denial in coping with this horrible illness and reading these posts undermines this coping strategy so they avoid it. Some may read a lot but not have time to post much or feel they nothing worth while to contribute. Some of us like to speculate out loud for the world to see so we put it down here in black and white to see what reaction we get.:unsure::wink1::biggrin1::scared::eek::confuse d: last smiley is broke

RudiK
07-16-2011, 01:56 PM
I was diagnosed in April and discovered and joined this site in May. I check it every day, but only add "my nickel's worth" if I have something to contribute.
Rudi K.

vdub
07-16-2011, 02:40 PM
I guess some of us use the site as a social network. Talk among friends with something in common -- wegs. I can't talk to friends or family, aside from my wife, about the disease or how I feel. They don't understand and probably get quite bored with the discussion anyway. Everyone on the forum knows where you are coming from. I pick up so much good information on this forum and the interaction gives me tid bits of info that I really hadn't considered. Or, as Dobi Gillis would say, "good stuff, Maynard"......

freakyschizogirl
07-17-2011, 02:05 AM
Well, scuba diving is one that has been crossed off the list. Another that will potentially be crossed through is getting a couple ATV's and heading across the Rockies. Still on the list; visit Russia, cruise down the Rhine, visit Duxford, UK, snorkeling in the Virgin Islands, snorkeling at BoraBora.

I go past Duxford all the time on my way to Addenbrookes...we saw them practising some manouvers last time we went past, they fly right over the motorway!

vdub
07-17-2011, 08:45 AM
My father-in-law flew P-47's and P-51's out of Duxford during WWII. Always wanted to see it. Do they have a museum there?

pberggren1
07-17-2011, 03:12 PM
Physicians are needed in our case. They removed the impedements necessary for our bodies to naturally heal on their own.

I would like to think that at least a small number of docs visit sites like this. I have never asked my doc if he does. He seems like the kind of person that would. I remember another member on here saying that her doc visited this site from time to time.

Fran
07-17-2011, 06:50 PM
Hi vdub - Yes to your question regarding Duxford museums. If you google 'Duxford American Air Museum ' there are lots of leads. I hope you get to visit soon. I achieved my lifelong ambition in 2004 when I came to America - New York, Washington, Vermont, Hyanis, P-town, Niagara Falls and all the places inbetween. ( I generally bore my family to death with it !!!! ) Makes me feel good to think I achieved it though. You sound as if you have had and still have, a very interesting life anyway, but I hope you can cross some off your ambition list soon.

Fran