This is me being tactful.... but I'm seeing a trend on here that I want to address.....

For a lot of us "OLDTIMERS" here (and I'm speaking of those of us who come to this board everyday to help, support, see what's new, etc), we're seeing a whole lot of people come here who have just been diagnosed and want something to STOP the pain immediately. And we're also seeing a lot of people who were here years ago and got help when they needed it and just now got hit again and have come back after being absent while in remission.

I'm having trouble putting this into words, but I just can't understand why anyone would go away and not stay and help others or stay around and try to help find something to enlighten their docs the next time they're hit (we know we're going to get hit again) or just keep up with what's been done or what's new.

There are a handful of people (some episoidic - some chronic) who check this MB daily and help where they can (because of the help they received when they needed it), but so many just come - take what they need and leave and never give anything back. Those are the ones I don't understand. Then a year or so later when they get hit again they come back and when those of us who have been here try to help them they say, "Oh I tried that and it didn't work!" Well, things might have changed in the past year or so and if you'd read the NEW info on the left or stuck around you'd know that!

It just hurts me when I see someone say, "Hey, you guys have been wonderful. My cycle is over now and I don't need you anymore. Maybe I'll see you if this thing ever comes back." The real funny part of that one is - had the board moderator had that attitude we wouldn't have a board to come to anymore. Yep, for those of you who are new and don't know - our DJ (the guy who started this board back in April of 98 because he thought he was alone with his CH) doesn't get CH anymore. Hasn't for years, yet he keeps this board up and running for those of us who do so we can get and give the help that's needed.

For those who have stuck around after your cycle ended and for those that are in remission and are still here daily, that's what it's all about. Helping those who need help get the help they need.

Guess I just needed to get that off my chest. Thanks for listening.

Hugs BD

For many years I was one of the guilty parties. I sincerely believed even thinking about CH could trigger a cycle. Certainly not a logical place to be...no argument there...but that's how bad they scared me.

Like wih everything else on this board, it was one person reaching out to me..(that incedibly persistent Linda Howell chick)...that got me on board full time.

You just never know where people are coming from I guess.

Joe

Quote:


I really WAS a thorn in your side, wasn't I Joe?  Sorry about that.  I'm not sorry, however that it worked, because you have been such a help around here ever since.  Especially newcomers.  Your presence here has been a real attribute to this site.

While I understand folks getting on with their life when not in cycle...I just wish I could convince them to check in say...once a week.  See what's new and offer their unique insight to someone else who might be in the pits of hell. 

Linda

This REALLY hits the nail on the head.  I spent 4 years undiagnosed, having every kind of test imaginable and being told I had allergies, depression, stress, anxiety, sinus problems, inventive mind, etc.  When I finally did get the diagnosis, it was from a neuro who had a little but not enough knowledge, who prescribed the wrong oxygen dosage, laughed at me when I asked if this causes permanent damage, and flat out told me I was lying when I said it's one sided and that it wakes me up.  He insisted that doesn't happen! Now it's been 6 years - I just found this site a few weeks ago - I have never met of heard of anyone else who has this, and am ecstatic to find you all.  I feel like I found my long lost family.  I am completely chronic - 3 - 6 hits a day with a one or 2 day break about every 6 weeks for 6 years.  I have a full time job and a daughter in medical school.  I cannot imagine leaving this board now that I've found it and have every expectation of finding as much help as I possibly can, and sharing anything I find!  Thank you all for your unfortunate reason to be here! And yes, I think it would be great if we did come up with a reason to draw people back and am completely willing to get involved.

I can see both points of view. The veterans really helped me calm down a few ago when I read posts and saw options.  But at the same time, the more I think about CHs, the more anxiety I get and more hits. I can understanding people wanting to forget they exist when their cycle ends. But at the same time, who is going to help the newbies. Its a tough issue

jesbri wrote on May 5^th, 2009 at 6:32pm:

even out of cycle i get allot of help from people here on the board. there's allot of resourceful people here. even though i haven't had an atack in a year and a half theres other things i need help with and hopefully i'm helping others out with my posts.  i admit this board has become more of a social network for me but i try to advise on ch as much as i can. my advice probably isn't the best but it still feels good to identify with sufferers and try to help.

i feel that i need to hang out as much as i can and build up my credit for when i'm back in cycle cuz i know i'll be a big pain in the ass when i do.

i guess i can understand wanting to put a cycle behind them though. before i came here i aways did. but now i'm fascinated by this condition. everytime i log onto this site i learn something new.

edited to add: any of you remember when i was stuck in denver last thanksgiving and i needed a shoulder to cry on? didn't have anything to do with ch and yet you all opened up your hearts and told me it was going to be alright. even the lurkers sent me pms. being alone doesn't usually bother me but those family holidays can be rough on a fella.

I'm new here just found the site last week, but I have been in recovery for a good spell. So please pardon my cross references but I think they fit rather well here.

If it wasnt for the newcomers there would just be the same people talking about the same things over and over again. So the newcomer is the most important person in the group. They allow us to freely give what we have freely been given.

After a bit they are offering advice to others the same as it was offered to them, those that take and run are just that takers they got what they needed and feel they are free to go ... until another attack another crash another crisis. Hopefully they will understand after a few times they are needed to help others the same way they need help.

So I guess what I'm getting to is this:

You do not truly have something until you give it away, and to give away what you have freely received is divine. This is how I get recovery I may still be in pain but my soul is healed and ready to give to others in need.

my 2 cents

~James

Jimi wrote on May 5^th, 2009 at 7:19pm:

THAT was what I was trying to say... See Jimi just cuts thru the B$ for me....

Hugs BD

For you "OLDTIMERS" the one draw back about all us newbies hanging about is now and again we will get this inspirational idea for a new thread. As soon as we check our preview and then hit that "Post" button i can here the groans "Ahhh Jeessssuuuss"...! not this again, humour us like you continue to do

That's an excellent reminder.....it's another form of "cliqueshness" ...(anyone gonna call BS on that word? )....which is death for any kind of open forum. Thanks for the point Lefty.

Joe

Hello to all of you!!!!

I don't know where to start first so bear with me.  Thank you Barb for giving me the boot today that I  needed.  I am one of the old timers.  I am very proud to say that but not proud of the fact that I have been a lurker for the last 4 years.

One thing I can say is that I know for a fact...Once you have been here, once you have met these people in person you are changed forever.  When I came to this place 10 years ago I was stunned that there were other people in the world that were going through the same nightmare I was.  People who knew exactly what it felt like, people that had gone years without help, years without being understood.  There weren't that many of us 10 years ago but there were enough that all of the sudden the black cloud lifted and you knew that you had a place where you could go.  I'm sure that all of you can relate to what I am trying to say.  That being said, going from having it to not is more torture than should be allowed.

My reasons for being a lurker may or may not mean anything to those of you reading this.  It never had anything to do with taking and not giving back.  DJ and members of this board so many years ago gave me back my life, for that I would give mine to help another sufferer.   There is nothing I wouldn't do to help another sufferer.  There are a few here that know that and through them, miracles do happen.  Sometimes things aren't as they appear.  Sometimes you have to ride in the back of the boat just to keep the sailing smooth.  I chose to do that, and that my friends of old is why I lurk.

Lot's has changed over the last ten years and I will tell you that from where I sit today, all for the good.  If there is no retribution for this post maybe I can finally move from the back of the boat to getting an oar in my hand.

My heart goes out to all of you and I miss so many of you so much you'll never know how much you've meant to me.

Always in my thoughts!!!
Piper

Well,  I'm doing better and I'm guilty about the rarely back here thing. I check back once a week or so but rarely post.

In my defense, I've gone back to school and work and now that I'm doing much better I am planning on going for the premed requirements with the idea of eventually going for a MD/PhD in Neuroscience so I can study these things and hopefully find more reliable treatments or better.

Katy