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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> afraid to post
        
(Message started by: veryhurtnewbie on Aug 17^th, 2004, 4:41pm)

Title: afraid to post
Post by veryhurtnewbie on Aug 17^th, 2004, 4:41pm

Through no fault of mine, I'm ashamed of my very first (and second) thread.

I'm just an innocent clusterhead looking to excahange info and support with other clusterheads. It was the behavior I wanted no part of, not the family. (None of us want to be clusterheads!) We are all part of this family whether we like it or not.

I was not taking potshots at DJ. I appreciate all the effort and resources he put into setting up this site. I was glad to find it after wading through stuff on cluster bombs and cluster computing as well as migraine. This is the first and only message board I've been interested in, and I really didn't know what a moderator does. I was hoping for a little help, but I hear he prefers to let us work things out ourselves. Fair enough. It's his site, "the most caring, compassionate, supportive family of cluster headache sufferers (and their supporters) in the world". (And some of you have been very supportive.)

I'm not trying to take away anyone's freedom of speech. I'm just looking for a little corner where I can post a question and get relevent, supportive replies. There's nowhere else I can get the info I'm looking for. I don't care about status or who's fighting with who or why. I haven't said one wrong word to anyone, and yet I am afraid to post anything on any topic. I thought the sign on the door said, "Welcome".

If I post a question and you click on reply, you are always talking to me, regardless of who your remarks are directed at, as I am watching my thread. If the language and behavior is abusive, then I feel abused. I chose this board (cluster headache specific) because I thought I would be safe here. I choose not to go to restricted movies or porn sites, and if I thought that's what I'd find here, I wouldn't have come.

I pulled my posts, not because I was ashamed of what I said, but because I am ashamed to have my name on that thread the way it's turned out. I was hoping that without a topic the whole sorry mess would just disappear. It didn't work, and I can't get my name off the thread or out of the replies. Meanwhile, at least two important threads from newbies are getting lost in the shuffle.

I would like to publicly accept all apologies to me and thank everyone who has in any way offered me any expression of support. Thank you all very much.

Ex_pat_asia: I publicly accept your private apology to me. It sounded very sincere. Unfortunatley, you did me no favours by posting your public apology to the board on old thread. It's like some gruesome horror movie character that just won't die. If you have anything more to say, please start a new thread.

Title: Re: afraid to post
Post by pubgirl on Aug 17^th, 2004, 4:52pm

Bravo!

(keeping posts short so I don't get misread by anyone ;;D)

Wendy

Title: Re: afraid to post
Post by thomas on Aug 17^th, 2004, 5:00pm

If I offended you I am sorry.

Title: Re: afraid to post
Post by Superpain on Aug 17^th, 2004, 5:37pm

Damn... I missed it again! >:(

Don't be afraid to post...

Some people when getting their feet wet on a BBS seem a little over sensitive... Understandably.
But with time that should fade hopefully.

Take what you want and leave the rest... Getting upset over any thread is a waste of time and energy. There is far too much valuable information and support here to let a stray thread ruin your day. Suck it up newbie! :P

Welcome BTW... :)

Title: Re: afraid to post
Post by BlueMeanie on Aug 17^th, 2004, 5:51pm

First off, change your name.

Many of us, including myself, have felt a little discouraged at times when posting here. You've got to remember there are hundreds of people and you're gonna get some replies you may not want to see.

Be tough and stick with this place. It will get better as you get a little more comfortable. If you get Clusters, this board is here for you just like everyone else.

Welcome to Clusterville. ;)

Title: Re: afraid to post
Post by Superpain on Aug 17^th, 2004, 6:00pm

Yeah... The name doesn't lend itself to sticking around long...

Title: Re: afraid to post
Post by pubgirl on Aug 17^th, 2004, 6:02pm

Ang has already changed her name once. Do you mean change it again?

W

Title: Re: afraid to post
Post by Superpain on Aug 17^th, 2004, 6:13pm

Well... "veryhurtnewbie" doesn't sound right after the 5th post. :P

Title: Re: afraid to post
Post by veryhurtnewbie on Aug 17^th, 2004, 6:25pm

Relax, guys. The name change is temporary to make a point. It would look very silly on a hall-of-famer![smiley=laugh.gif] Whether I stick around or not will depend on whether it's possible to have a civil conversation. I'm not being oversensitive. I just live by a different standard than some, and if the obscenity level of a support group can force a clusterhead to give up and leave, that really would be "weird and sad".

Title: Re: afraid to post
Post by IndianaJohn on Aug 17^th, 2004, 7:04pm

Welcome back Ang!

So glad your still here and hope your future experiences are as helpful as mine have been. This is really a wonderful place to be and the people are truly great. Everyone has made my own struggle with the beast that much easier.

PFDAN to Ya!

Title: Re: afraid to post
Post by Kevin_M on Aug 17^th, 2004, 9:01pm

Most all posts get sidetracked, but of course there are many good answers. The humor and dedication to clusters is pretty constant though. Posts comment pretty much on any aspect of the conversation, there's a lot of people here. Just speak up whenever you feel like it, what's to fear. Some are good at talking to gentle ears.

My first day was a board stopping brawl. Sometimes it takes a couple of deep breaths to get accustomed.

Kevin M

*edit*
Quote:

Bravo!

(keeping posts short so I don't get misread by anyone )

Wendy

Wendy, you kill me! ;;D

Title: Re: afraid to post
Post by farmboy on Aug 17^th, 2004, 9:02pm

Damn i am lost again.

i will say welcome back , welcome here, who ever you are.

Title: Re: afraid to post
Post by thebbz on Aug 17^th, 2004, 9:15pm

I would not take any response personal. I figure its the prednisone or some other poison the docs have us on. I stalked this site for a year or so, as some of the conversation was deleterious. One thing for sure CH has contributed to our attitudes and sense of humor. Keep on keepin on. We are all in the same boat so to speak. BB

Title: Re: afraid to post
Post by alleyoop on Aug 17^th, 2004, 11:35pm

Welcome back Ang. It's nice to see someone who is not only intellegent, but also good at expressing herself on these boards.

.................................alley :)

Title: Re: afraid to post
Post by Gator on Aug 18^th, 2004, 4:17am

Welcome back. Glad to see you are still around. Everyone with Cluster Headaches deserves the help this site can give them. Many of us figuratively and literally owe our lives to the people here. They can be fiesty and hard-headed and down right rude sometimes, but they have hearts of pure gold.

As far as threads go, you really can't claim ownership of a thread. Once you hit the post button, that's it. More than one thread has been sidetracked, hijacked and/or just basically taken on a life of it's own. Nothing you can do to stop it. Don't take it personal - won't do any good anyways.

If someone does give you some guff (and sooner or later someone will - sorry, fact of life, deal with it), you can ignore or give back as good as you got - your choice. Some jokingly say you know you've made it when someone tells you to STFU. (I'll let you figure that one out) Happens to all of us at one time or another. Wear your thick skin and your flame resistant underwear and dive in.

Like has been said, I hate that you had a reason to look us up, bad damned glad you found us. Stick around, ask questions, read posts and join in where you feel moved to. That's pretty much the straight scoop on the poop.

Gator

Title: Re: afraid to post
Post by synergy on Aug 18^th, 2004, 5:37am

Welcome back and dont be afraid to post hun.....

The people on this site have me to help my partner (he is the sufferer) and i couldnt do without them now - im pissed off though cos i just got myself up to new board junior and had to change name etc... due to my computer going mental - so now im a newbie again!!!!

Hey - its all good!!!

luv sarah xx

Title: Re: afraid to post
Post by Sycamoetree on Aug 18^th, 2004, 7:54am

Don't know the details but I'm new to this message board too. I also get to watch the brawling on my company's message board which is primarily people with disabilities, many in chronic pain.

That's something to keep in mind with this particular community. We're people who are posting here specifically because of a horrendously painful condition. It puts people in a very bad state of mind.

But try not to lose heart. And enjoy the one great thing about this--how INCREDIBLY GOOD it feels when the pain stops!

Title: Re: afraid to post
Post by don on Aug 18^th, 2004, 10:38am

Quote:

Some jokingly say you know you've made it when someone tells you to STFU.

Christ! If thats true then I've been memorialized.

Title: Re: afraid to post
Post by alleyoop on Aug 18^th, 2004, 11:49am

on 08/18/04 at 10:38:19, don wrote:

Christ! If thats true then I've been memorialized.

Hey Don, STFU!!!

.........................................alley ;;D

Title: Re: afraid to post
Post by don on Aug 18^th, 2004, 1:48pm

Cast me in bronze and dangle me from your car mirror.

(Alleyoop sucks)

Title: Re: afraid to post
Post by Virginia on Aug 18^th, 2004, 6:38pm

Ang,

Unfortunately, you can't control what people write on any of the threads (including ones that you have started). We are a very mixed group of people here with a wide range of personalities.

So if you want to stick around (and I hope you do), put on a hard hat and jump right in. It probably won't be the first time you get your feelings hurt (but it's never intentional)! It just comes with the beast!

Virginia

Title: Re: afraid to post
Post by FZfan on Aug 19^th, 2004, 2:18pm

on 08/17/04 at 16:41:37, veryhurtnewbie wrote:

If the language and behavior is abusive, then I feel abused.

I'm sorry you feel that way. Hey, they're just words. I personally feel my tag line sums up my feelings on the subject.

Like others have said, sorry you had to find us, but glad you did. If other people's language and behavior is going to control whether you stay or go, then I feel very sad for you. That is not nearly a good enough reason to reject the help available here.

Title: Re: afraid to post
Post by ExplodingEyeBall on Aug 24^th, 2004, 9:46am

Ang...

The people on this message board bear an incredible amount of pain, some chronically. Sarcasm and humor are the ways most of us cope.

Sometimes, what gets typed and put into a post may seem a little harsh. I've been bitten myself. I've also been the one doing the biting. I'm not proud of it but that's just the way it is.

When people here go into attack mode, I let it slide as much as I can because I know that most of the time I am on the recieving end of someones venting.

If flaming me makes you or anyone else here feel better or shortens your CH by one second then flame away. I don't take any of it personally.

There were a couple of times that people flamed me and I thought it was a little out of hand. A quick personal message to the person who flamed me expressing how I felt about it always resulted in a very freindly exchange and usually an apology.

Take every thing you read here with a grain of salt and if something offends you, P.M. the person who did it and I think you will be surprised at the results.

Don't be afraid to post here.

Pat

BTW: STFU!!!!!!!!!!!!! (humor....arrr arrr arrr)

Title: Re: afraid to post
Post by Pinkfloyd on Aug 24^th, 2004, 1:23pm

on 08/24/04 at 09:46:51, ExplodingEyeBall wrote:

If flaming me makes you or anyone else here feel better or shortens your CH by one second then flame away.

Then again, to abuse someone else in any way just to make yourself feel better, is considered bad form in most societies.

Funny that we tell people to leave their spouses if they are verbally abused because it is just as bad if not worse than physical abuse, but actually advise people here to do the same, and it's ok just because they suffer from chronic pain?

People that use chronic pain as an excuse to abuse others most likely were abusive long before they were in chronic pain. Just a handy excuse IMHO.

In one thread we'll talk about how compassionate and caring cluster people are, and attribute it, at least partially, to life with chronic pain.
In the next, we excuse abusive conduct for the same reasons. I guess chronic pain is an explanation for all actions. Very convenient indeed.

Not picking on you EEB, just commenting on the subject at hand. I see these excuses every day, not just on the interent but in every day life. We all need to vent and sometimes we snap at people that don't deserve it, including me (snappER not snappEE). I just don't think we should use verbal abuse as a tool to make ourselves feel better.

PF

Title: Re: afraid to post
Post by tenacious? on Aug 25^th, 2004, 5:31pm

Just to be clear, I came here expecting and fully prepared to ignore the odd swearword. That is not what we're talking about here. I posted "frankly, I'm disgusted" only after page 3 of the original post got much more obscene than that. It was truly an assault on my senses!

I'm not sure exactly when (I've been trying to avoid rereading it), but that thread has been partially cleaned up (by DJ I guess? I can't thank you enough!!). Those of you who looked at it later didn't get the whole picture (and that's a good thing). That's probably why some of you think I'm being oversensitive.

I started that thread to be found by the next person who did the same search I did. That's why it bothered me so much. Even after it finally dies, someone will come along and find 5 pages of mostly irrelevant and often abusive posts that, unfortunately, obscure the valuabe and supportive parts of the replies. I wish I had never started it, and it still refuses to die because people keep posting to it, even when they say they want it to die. If that's really what you want, do us all a favour and just stop posting to it.

I realize I have no control or authority over what anyone else posts, but it works both ways. It would be a mistake for any of us to think we can control who is going to read what we post on any thread, so we would be kind to consider the "gentle ears" and eyes that are also a part of this very mixed group. We have just as much right to the help and info offered by this sight as everyone else here. The "Welcome" sign didn't say anything about thick skins, hard hats, etc... And for those who just like to give newbies a hard time, I thought the HAs were HAzine enough.

Some clusterheads lurk without posting because of this environment, and some just leave without saying goodbye. We have just as much right to the help and info offered by this sight as anyone else here, and we shouldn't be forced to make that choice.

Some of what happened here had nothing to do with pain or meds ( and I know what prednisone can do. I've seen it in action). I agree with Pinkfloyd. We cannot use it as an excuse for abuse. No one is forcing us to hit post.

Sorry this post is so long. I don't have full-time access, and I'm still not posting very often, so there's alot to say. If PMs counted, I'm sure I'd be a "hall-of-famer" by now. I have willingly accepted every apology, public or private, and have very much appreciated all the support I have recieved. It would be a shame to have to leave because of 1 or 2 people. Thanks and PFDAN to all. :)

Superpain: This is my 5th post (officialy, the program subtracted the ones I pulled). Did you notice I changed my name again? Hopefully, I'll be able to pull the ? later.

Title: Re: afraid to post
Post by Superpain on Aug 25^th, 2004, 6:54pm

;)

Title: Re: afraid to post
Post by Jonny on Aug 25^th, 2004, 7:13pm

on 08/25/04 at 17:31:15, tenacious? wrote:

I'm not sure exactly when (I've been trying to avoid rereading it), but that thread has been partially cleaned up (by DJ I guess? I can't thank you enough!!). Those of you who looked at it later didn't get the whole picture (and that's a good thing). That's probably why some of you think I'm being oversensitive.

DJ does not remove peoples individual posts, Ever!

He only removes complete threads that are way out of line.

If there are missing posts then they were removed by whoever posted them, not DJ.

It takes a lot for DJ to get involved, I can guarantee that if he did this whole thread would be gone.....POOF!

.................................jonny

Edit.....BTW....Ya think you can stick to one name?.....would make it a lot easier on all of us ;;D

Title: Re: afraid to post
Post by tenacious? on Aug 25^th, 2004, 8:10pm

Jonny: I don't know who pulled the missing posts. I'm just glad they're gone. The whole thread disappearing would be just fine with me.

I know from other threads that you've had a really hard time with the beast, and I know this site means a lot to you. I cried for you and everyone here when I read the homepage. I would gladly share my remission with you all. I'm sorry if I hurt your (or anyone else's) feelings when I said I wanted no part of it. As I said, it was the behavior, not the family that I was referring to.

I can't tell whether you're trying to be helpful or mean at this point. [smiley=huh.gif] Hard to tell tone of voice in text. I'm still waiting for you to say something nice. I'd like us to be able to support each other, but if that's not possible, can't we just leave each other alone? I'm sure you don't really want to be the reason I finally give up and leave.

It would be easier for me too, if I could stick to one name. I changed my name the first time because after what happened on the first thread, I wasn't feeling very gr8ful and it just didn't seem to fit anymore.

Title: Re: afraid to post
Post by Jonny on Aug 25^th, 2004, 8:16pm

If I was being mean you would know it, just trying to let you know how DJ works the board is all.

............................................jonny

Title: Re: afraid to post
Post by tenacious? on Aug 25^th, 2004, 8:25pm

OK. Thanks. I guess I can count you as a friend then?

;;D

Title: Re: afraid to post
Post by Jonny on Aug 26^th, 2004, 3:45pm

;)