I wanted to start a new thread so as not to hijack the other 'jonny' thread.

I am taking a risk here getting flamed or seeming like a 'victim'  something that annoys the heck out of me personally.   It makes sense to me to pay attention to Jeannies comment in the other thread and I am glad to see that several people validated her with their kind posts.  

I am relatively new myself.  I joined march of last year but I am on the board everyday.  While I don't necessarily post everyday, I read just about every post everyday.    It is clear to me that there are some very deep relationships that have been built on this site.  Amazing actually and inspiring.   I have noticed that those members who have met each other person and connected through meet and greets etc have forged even stronger relationships .   I have noticed the deep sense of friendship amongst that group.  

I have also noticed what Jeannie has noticed.   I sort of feel a little nervous sometimes as well about stating a strong opinion etc  for fear of being disregarded or flamed .    Am I thin-skinned?   Maybe...   Am I a little  shy perhaps?   Thats more likely.  


However, this is a tough group to 'get' in with.   I have seen many other folks post the same thing so I feel confident that it isn't just my perception.  I wonder if some( please note I said some.... ;) newbies leave because of the difficulty  making connections.  It was certainly noticable to me within the first few days of joining,  but I wasn't using this board as my social connection but rather to get help.  

For you guys who are vets ... do you have suggestions or thoughts on how to crack this nut?    ;)


Kelly

Kelly....

Five years ago I was a noob and felt much the same way. It took a while to become comfortable around here. I posted some, but wasn't "high profile". I went to a meet and greet close to my home and met a good cross section of folks. Some are still here, some have moved on for a number of reasons. That day started several friendships. One in particular was with a individual that had given me a rash of poo about something I said in one of my very first posts. I now consider him like the brother I never had. He could call me right now needing help and my truck would be pointed towards his location in less than 30 minutes.

Even after meeting folks that day and becoming more active on the boards, I still had the feeling that I was "just here" to many people. That was ok......heck I've never won a popularity contest in my life, nor do I intend to try.

When I rolled into Nashville for my first OUCH convention, I really didn't know what to expect. Some of the people I had met before would be there, but mostly it was to be a collection of folks that I "knew" but didn't really know. When I arrived I checked in and started searching for our group. The first person I found was someone that to my knowledge I hadn't spoke directly to before. I was shocked......after a big hug and a "I've been looking forward to meeting you." I was dragged  by the arm to where everyone was.....and didn't stop talking for 3 days. After that, I've felt at home here.

I guess the moral of the story is that people that have been around a while do notice newbies and in their own way accept them in without being as verbal about it as perhaps they should......until you meet them. I for one can't speak to everyone here like I'd wish to, but do reach out and offer help and friendship as much as possible. I think most everyone is that way....at least I hope they are.

Hope this in someway helps...

Bill

Kelly:

I'm not exactly a vet here, but been here a year and a half or so.

The concept of "rowing the boat" has to do with rendering information to those seeking it.  Some have gone beyond this and volunteered their time to OUCH, or are sometimes willing to send materials through the mail or to call others on the phone.

Those would be good ways to build up one's reputation and provide assistance.  I'm sure there are other ways as well.

Wishing you well,

Ray

Kelly...
I set back and contemplated what you were saying..and it's true. Not on purpose mind you, but true non the less.

You are right..there are very strong relationships that have been bonded here and just like Bill said, much of that has come from the numerous meet and greets and OUCH conventions that we have attended.

When I came on years ago on the old board we had a chat room that most all of us used. We stll have one but it isn't used as much. Just by some. That helped us to bond even before we met.

There were not near as many new people coming on the board daily back then and fitting in was a little easier.

I don't know what the answer is. But I am sorry that you have been made to feel this way. The best thing that will ever happen to you is to start saving up for the next OUCH convention and I feel certain that you will come away feeling just like Bill described. I know I did as well and have not missed one since.

I noticed you live in the same state as Bill. Have Bill pick you up and come on over to St. Louis in January. You will meet many of us then.

Thanks for posting this.

Hey Bill and Ray....
Thanks for the responses.  I think these hints will encourage others who are newer to hang in there.  I see the value in the connections and certainly cannot expect that  for those of us that are newer to happen without lots of meaningful exchanges.

I feel like I am rowing the boat and do get much satisfaction out of helping newbies.   It is amazing to watch real newbies get right in there and start 'rowing'.  Its what I like to see.. :)  

I think this validation helps more people out  than you know.

Kelly

Kelly, I'm not a "vet" in terms of being a CH.com alumnus (I think my title says I'm a vet?), but I've got a thought about your question.  I've been around and posting here since some time in 2006.  I have learned SO MUCH from this site and gotten a lot of support for myself and for Gary (Thank you DJ and Steph!!!!!!!)  

...But I've also gotten my share of shit - some of it I deserved.  Some of it I still don't think I did - BECAUSE people don't know me or Gary, and I don't owe anyone any explanations.  So I get stomped on, I take a break, I come back.  I always come back because Gary has a problem and docs haven't been able to find him any relief.  Yet.  And they're still calling it CH.  

Two-plus years later and I've connected with a few people, but CH.com isn't my "home."  Maybe that's because I haven't actually met anyone in person and I'm "just" a supporter.  Or perhaps it's because I only just recently started reading and posting in this, the general forum.  But because I've started participating here, I've added quite a few people (and families) to my "prayer list," and I really care about what happens to them, even though I don't know much about them beyond the trouble they've posted here.  But it's because I took the time to read, and my nature to care.  However, in any site that's dedicated to a topic that's been around for some time and has a "general posts" kind of forum, people are going know each other, be friends, or become friends, and as a newbie you have to be willing to just "jump in."  If it's too hot or too cold - either you adjust, you try again, or you get out.

For the people who come and go because it's hard to "break in" to that circle of friendship?  As you point out, it's not a social networking site.  It's here for people to learn and to share experiences.  If we're shy, it's not the board's responsibility to help pull us out of our shells.  If we're thin-skinned, it's our loss.  

Friendships form - from people meeting each other, from the conventions, from people reaching out to each other, from people connecting because they're like-minded, because they can tell they like someone from they way they post and what they say....  

You put yourself out there publicly, you subject yourself to public opinion - and either you have the personality to stand up to what comes or you don't.  There's absolutely nothing to do about "cliques" in a place where they exist simply because the sites have been around for a long time and people have had the chance to meet each other.  ...and I'm sure DJ and Steph do their absolute best to make sure that everyone gets treated fairly.  Because there was a problem, they enlisted the eyes of others.

IMO there isn't anything to do about people leaving because it's tough to make connections.  Maybe they should go to the O.U.C.H. convention!  But as you so aptly point out, the site is still here for us to learn from, whether we chose to participate or not.   [smiley=heart.gif]

Laurie

Jimi wrote on Dec 4^th, 2008 at 7:56pm:

I don't know what the answer is. But I am sorry that you have been made to feel this way. .

Jimi

How kind of you to say....   Your post is appreciated.   etc   .   I like this board and being a part of it.   I don't like feel like any  person intentionally engages in behavior to leave me out or others for that matter.  

I do believe it simply  happens naturally as a result of connections .  

I've thought about going to a convention.  I may have to put my money where my  mouth is one day and woman up and make it happen.   I am probably a little too protective of my time off these days.....

Thanks again Jimi-

edited because not sure why etc was there?

laurie

thanks for insight

Quote:

However, this is a tough group to 'get' in with.

I have heard this numerous times before and I still scratch my head at this question.   Get in with?  Clique?  All of us here are here for one reason.  To help, or be helped.  sometimes both.  This isn't high school where you have to dress like, talk like, act like the p[opular people to fit in.  This is a headache forum that DJ created to let EVERYONE know they are not alone.



Just because,  as has been mentioned....some of us have been here a long time and have made life-long friendships due to that, I have this sense that newer people want to diminish that and call us cliqe-ish.   I don't believe that is fair at all.  I apologize to no one because I have very good friends here.  

The old-timers here especially,  WANT and DO (for the most part)  welcome and try to help the newbies every single day....for me it's been 10 years.  


No flaming from me Mezza..I just hope you take my words in the manner I meant them.  As a  friend.  :-*

Linda-

I actually am not real sure how to take your post  :-?.  I'll have to think more on that.    I am not interested in dressing , acting , talking etc like anyone  and if I perceived that that was what this board was all about all the time, not sure I'd be here as that would be pretty darn dull.  Not really my style either.  

Sure everyone comes in the beginning to be helped and many stay on to help.  But clearly it is more than that for some.. I don't expect anyone to apologize for that and I certainly wouldn't want anyone to think I have asked for an apology, because I haven't.

Its difficult to articulate  because its subtle  and its tough to nail down.   I'll think more on it and I have more insight I'll share.  Thank you for your response

Kelly

Linda, to me it's just that when we're new it's easy to feel left out because we don't know the personalities and the jokes related thereto, and a lot of that (not a criticism, just a fact) goes on in all the forums, not just this one.  It makes it "feel" like a clique when we're on the outside looking in - e.g. new.  :)

That said - when people (like me) show up with legitimate questions, it is a VERY welcoming group.  But when people don't agree with what someone's saying or how they're saying it, people here get real honest about it, which can reinforce that feeling of being "not part of the group."

But..... if you stick around long enough, it becomes apparent that a lot of what "feels" personal in an attack or criticism or not-necessarily-so-nicely-phrased suggestion isn't (usually) meant to be personal, per se, it's just someone's "way," and being part of what many of you experience as a large, extended family, relate to that stuff differently than those of us that are new to experiencing the mix of personalities.

Laurie   [smiley=wave.gif]

Kelly,

I'm glad you brought this up.  Not because I think you are "right" and we are "wrong", or vice versa, but so that we can clear the air a bit with you and with other newbies.  

first of all, a lot of times newbies post and are offended at the "tone" of the answers they get.  Understand that you are only looking at squiggly lines on a phosphor screen that are typed out quickly and must be abbreviated so as not to write a book.  You are NOT seeing body language, hearing tonal differences, hearing voice modulation that makes up over 85% of "verbal" communication.  What is written by one person can be totally misperceived by another due to cultural, language (dialect), or even misreading.  That is unfortunate, but one of the biggest differences we who have been here longer have over the newer person is that we have had the opportunity to read a lot of threads and posts by the other posters.  This gives us the opportunity to get to "know" them and what they mean when we read it.  That is one of the reasons it is suggested on the welcoming pages that you read for a bit before posting a lot.  this helps you get familiar with us.  By no means do I feel we are "cliquish".  I know it can feel that way at first, but I have learned over three times coming here that it isn't.  If you say or do something stupid you will get an equal opportunity chewing.  But at the same time if you participate in a constructive way you will get an equal opportunity welcoming.  It might not be overt, but it is there.

Secondly,  DO make the time to get together with another clusterhead, even if you have to drive across the state just to have coffee.  Even if for some reason you don't like the person you will develop a bond.  Also, the next time you read their post, even if you totally disagree with it, it will resonate with you.  The first time I ever met another clusterhead I drove 3 1/2 hours to sit down for 45 minutes with a bunch of crazy people at the first Davcon.  The first person I met was Thomas and he about broke my ribs with a hug and we both cried.  (Man tears :))  Then I had to turn around and drive back.  It was three years before I was able to make another one, but I was homesick for that bunch the whole time, and can't wait to make it to St. Louis in Jan.  I may have to drive the 5 hours down and back the same day, but it is WORTH IT!

Hope this helps.  If it helps, PM me, and I'll give you my cell number and we can talk about it in person.

Jerry

Jerry-

Great Post... Lots of good insight that I very much appreciate.  I am thinking more about meeting other clusterheads- I've heard it said so many times that it is a 'life changing' experience.

Its interesting because I never came here for any sort of social connection.  I came here because my head  hurt so bad and I just knew there had to be something else that could help besides prednisone and immitrex.  What I found when I came here was exactly what I needed, great information , knowledge and hope that I could get through it.    

Of course once I got here,  I just sort of stayed.  I like to follow the rules so at first I didn't up and leave because I didn't want to be one of 'those ' newbies who took help and just left.   Once I stayed it just sort of became habit.  

Your seem very kind and I appreciate you taking the time to respond- I may just pm you soon for the number....

Kelly

This "newbie" feeling isn't new here.

The answers to my first couple of posts back in '99 were pounced upon by none other than Drummer (who we've been complimenting here tonight). I was totally crushed......thought I'd never post again.

After a couple of weeks reading the posts daily, I kind of got to know some of the personalities and bravely posted again.....and again.  I must have posted some good stuff because Drummer softened up.  I soon joined a committee, Drummer was President and we got to be very good buddies.

Drummer wasn't easy on newbies, but after my initial shock, I learned to love and respect him.

When he left, I was in mourning for sometime.

I don't know about the "kind" part! :)  there are those who would differ.

Meeting other clusterheads is not about socializing.  Yes we socialize, but it is more of a bonding.  Meeting another person in the flesh and having them UNDERSTAND you and where you are coming from will change your whole thinking about CH.  To sit with a group and get hit and no one look at you like you are weird is totally liberating.  You go from feeling like an oddball who has this weird condition to being accepted as an individual with worth who suffers with a rare disorder.  I had been there only a very few minutes when I got hit with about a K7.  All anyone said was, Do you need Trex?,  Oxygen?,  Water?, a private room?.  I just sat there and rocked and tried to take in all that was going on around me with tears running down my face.  I just tried to make them think it was due to the pain.   :)

Jerry

Jerry, you need to stop that now. You are starting to make my eyes run. :'(

Good post
and hello to Kelly, Jeannie and other new(ish)

I don't suppose it makes you feel any better to know that this feeling has always existed, and it isn't just here, it happens on most forums.

It also might not help to know that people leave and return on a regular basis (I have, I've been around far longer than my profile suggests, many others have too)

This should happen less now perhaps as it used to be almost an initiation ritual to be really flamed by someone- hopefully the moderators will make sure it doesn't happen any more as it is pretty dreadful to be on the receiving end of.

Just keep posting if you want to, just read when you don't. Express opinions, life would be very dull if people were TOO careful.
Try and offer help but I would add a proviso- (sorry for saying this  :-[) only give advice if you know what you are talking about, or it is quite hard work for other people to undo misinformation given by new people who haven't read enough yet.

Wendy

pubgirl wrote on Dec 4^th, 2008 at 11:32pm:

Try and offer help but I would add a proviso- (sorry for saying this  :-[) only give advice if you know what you are talking about, or it is quite hard work for other people to undo misinformation given by new people who haven't read enough yet. Wendy

Thank you for your post wendy  and your thoughts too.  

If you are referring to the post to brian about verap and indomethicin-  I really don't think I was giving misinformation.  Sorry if you  thought you had to 'undo' something.  Its great though that you had something to add to enhance that thread though...  

Kelly

Wendy said, "It also might not help to know that people leave and return on a regular basis (I have, I've been around far longer than my profile suggests, many others have too)"

Every time we run her off she comes back! :)

I'm really glad you are back this time Wendy.  Missed you while you were gone.

Jerry

mezza wrote on Dec 4^th, 2008 at 11:41pm:

pubgirl wrote on Dec 4th, 2008 at 11:32pm: Try and offer help but I would add a proviso- (sorry for saying this  :-[) only give advice if you know what you are talking about, or it is quite hard work for other people to undo misinformation given by new people who haven't read enough yet. Wendy Thank you for your post wendy  and your thoughts too.   If you are referring to the post to brian about verap and indomethicin-  I really don't think I was giving misinformation.  Sorry if you  thought you had to 'undo' something.  Its great though that you had something to add to enhance that thread though...   Kelly

No Kelly - wasn't at all referring to that- I promise. That wasn't misinformation and I think your posts always seem very sensible to me (unlike mine sometimes!!)- I was thinking more of the new people who pile in and advise people to take their own personal "cure" in their first or second post. They are asking for trouble!!!

W

AHH  ... Thanks for clarification wendy...  Yes ... I've seen that too.  

Callico wrote on Dec 4^th, 2008 at 11:43pm:

Wendy said, "It also might not help to know that people leave and return on a regular basis (I have, I've been around far longer than my profile suggests, many others have too)" Every time we run her off she comes back! :) I'm really glad you are back this time Wendy.  Missed you while you were gone. Jerry

;D ;D ;D ;D Jerry

See Kelly- it's true!

These bu**ers have run me off or pissed me off so badly I have deleted myself before- forgotten how many times.
I think there should be a "cooling off" period after you hit the "delete" button in total fury or if really upset, a bit like after you have ordered a kitchen, you get two weeks to change your mind and get a refund!!!

W

pubgirl wrote on Dec 4^th, 2008 at 11:48pm:

[quote author=64464B4B4E4448786C4E43270 link=1228435468/18#18 date=1228452209]I think there should be a "cooling off" period after you hit the "delete" button in total fury or if really upset, a bit like after you have ordered a kitchen,

Yep.. I found the great little email feature at work where you can retract your emails .. of course you have to get to it before they do ;)  Its working like a charm for me so far since I found it a couple of weeks ago.   Several jerks at work have  narrowly escaped my wrath  

Mezza, It would be nice if there was a “are you sure you want to do this?” box to at least give ya a second or two to contemplate what you are about to do in the heat of the moment…Rolo… :)

Add: or a confirm email link you have to respond to… 8-)

Mezza, I am sure that we do look like a clique, and I suppose, in a way, we are.  Not that we try to be, nor are we an exclusive clique.

Maybe those of us that have actually hugged (and groped ass) in person, DO tend to seem cliquish.  But, the bonds are SO strong, you can't help it.

Many have mentioned about meeting another clusterhead.  That is truly an AWESOME experience!  There are several of us, here in the Carolinas, that have been talking about getting together.  It has been a while, since we have.  It is time to do it again.  We have had them in South Carolina (the first one I went to), a couple of them here in North Carolina, and a couple up in Virginia.  The last one was this summer, up at Jen's house.

I have now been to five O.U.C.H. conventions, and hope to go to many more.  I never made it to DavCon, but already have my flight and hotel reservations for LouCon.  I will continue to meet with clusterheads, whenever I can.  I feel that strongly about it.

I will send you a PM with my phone number.  I am not afraid to give it to any clusterhead or supporter.  I spend a LOT of time, either on line (via skype or other instant messenger forum) or on the phone with people from this site.  I never regret it.  Don't be afraid to use the number I send you.  

And, for anyone else that would want to talk to a fellow clusterhead, I am more than willing to talk to you, as most others are too.  Just get your nerve up, and ask for our number.  Most of us will gladly give it to you.

To all you newbies:  Welcome to our clique!

Chuck

I know exactly what you mean. I've gotten in trouble only once, eons ago but I stuck around anyway. I've pretty much outlasted the players in the episode.

Someone always seems to add a sentence or thought that sounds worse than it is when a noob first posts. I never understood it but it's rarely meant to drive you away.  All you need are some friends.....you have a shitload of them right here no matter what you may think. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Charlie

There is only one piece of advice I'll give anyone here - be yourself. There is nothing else you can be, nothing else you should try to be and nothing else that will ever mean anything to be accepted as.

This is like starting a new job, you're new and it takes time to settle in, for others to get to know you and for you to get to know them. I know EXACTLY what you meant, I was new once and I remember it vividly. It took me months to feel really comfy here but - I was learning and making more friends every day, getting into conversations, getting to know people, them getting to know me. It was slow, but it was sure. I wouldn't change how I started here but that's just me.

We get to know you by your posts just as you get to know us by ours.

I think we need one of those huge big questionaire things again we all get by email - someone post one and we can all fill it in, them's fun!

In the meantime - I quite like the "me's" I'm getting to know day by day.. hope that helps!

Helen

Hi Kelly,

You have done a wonderful job articulating exactly what I was feeling.  I tend to be an emotional person, acting on my feelings, sometimes before I think.  Not a great quality, mind you.  

Looking back, when I first posted here, I was terrified.  I was so consumed with fear of facing another cycle that I was just about paralyzed.  I felt like the people here wrapped their arms around me and comforted me.  Then, when it was time, they gave me a swift kick to get on with my life.  I was grateful for that as well.  I then faced another medical scare and there they were again to encourage and support me.

All in all, this place has helped me much more than it has ever made me feeel unhappy.  Two of the people that I felt that I had bonded with are now gone and that has made me sad.  I'm glad to have found this place and look forward to meeting so many in Jan.  I REALLY hope that you can come!  I also hope that anything I have said in other posts doesn't make me unwelcome at that gathering.

For me, maybe I should get back to helping other newbies who are terrified like I was.  I have learned a lot here and I know that I have the ability to help at least one person.   I'm glad that you are here, Kelly.  I hope that I didn't hijack your thread...It wasn't my intent!

Take care,

Jeannie  

Jeannie,
I can't wait to meet you in January.  
Sitting around with a bunch of clusterheads is great.  Your bond will become even stronger.  

It's hard to read between the lines on the internet sometimes.  But, I can tell you this....you ARE a member of this family and I hate that you've felt otherwise at times.

Can't wait to hug your neck..

Much Love,
Jackie

They say old solders never die, they just fade away… I’m going to fade away for awhile.

I love this place too much to drive others away. If running my mouth has hurt anyone here, I truly am sorry…..

:-X

Well, this keeps getting worse and worse.  I didn't get angry at one particular person.   I certainly didn't want anyone else to feel the need to leave this place!  Truly there is not one person here that I wish was not.  My point was that ALL personalities are needed here.  I hope you reconsider.....

Jeannie

Quote:

I love this place too much to drive others away. If running my mouth has hurt anyone here, I truly am sorry…..

Well I don't know where that came from. Rolo, I really enjoy your posts. If you must leave, you must leave, but I have not seen any of your posts that would drive someone away.

Come back when you need to.  You are part of this community and we will miss you until you come back.

Rolo-man,
Check your PM's, please......

Sorry folks, don’t get in an uproar… My mom called and her furnace is going out… I’m dealing with a vintage 60’s wall unit at my mom’s lake cabin and so on…

I am just going to take a break for a bit and reassess things… I am not leaving, just gona let some slack in the rope so to say and fade to the back posts a bit…

My PM’s are forwarding to my Email and I do LYG!!... Rolo…PF’s to all!!

:)

Just so everyone doesn't start freaking out, Jeannie didn't delete herself.  She was having trouble with her original profile so I helped her out.  she didn't need two profiles so I had her delete the newer one.

wrote on Dec 5^th, 2008 at 1:18pm:

I love this place too much to drive others away. If running my mouth has hurt anyone here, I truly am sorry….. :-X

Rolo

I have never gotten that impression from any of your posts ....
:)

Kelly

Jackie wrote on Dec 5^th, 2008 at 2:07pm:

Rolo-man, Check your PM's, please......

Yes, please do.

With your PMs forwarding to your e-mail, you're not going to get much of a break!

Good luck with the furnace.  :)

Laurie