The state of BT-CP

[Peter B]

Hello All,
I hope everyone is feeling well.

I just wanted to bring up the fact that while I know nothing ever remains at a constant level, the amount of posts here (as compared to years past), has dropped off considerably.

Back in the day you could expect at least a whole page of new posts, everyday. Sometimes there would be 2 pages. I know that it's true that people come and go, all the time but, considering how many people are registered here, there should be more people with issues that need addressing. Is it just me or do any of you agree? I'm just curious.

I'd much rather a site like this become unnecessary but the fact of the matter is chronic pain has been around since the beginning of time and doesn't seem to be going away anytime soon.

I believe that, evolutionarily speaking, our bodies have not adjusted to walking upright, resulting in the wide spread condition of back problems. It's probably true throughout the world. Back problems are probably the most common reason for chronic pain. I could be wrong but I don't think so.

Pain free days,
Pete

[slipnslide]

Pete,

I agree with you. Especially with having lost the archives to the old BT, it is much harder to read up on other people's experiences, questions, and answer's. Since not much is being posted (as compared to when I first started here), I often search previous posts and not find what I am looking for.:(

Best wishes all,

Kim

[Mark N]

Pete, we are in a down cycle right now and a big part of it is that our conditions haven't changed much so there isn't much to talk about. It will cycle back up as something happens to one of us or we have another life changing event. I know for me, I don't want to talk about my pain and daily restrictions very often as working on other things keeps me from getting depressed.

[Diandra]

Hi Pete,
The # of posts do ebb and flow quite a bit and there is less traffic than the old days of BT.

Don't know how long you have been around Pete but, Braintalk was around for years and then went down for quite awhile and in the interim, Neurotalk popped up and lots of people used that Chronic Pain forum. Then Braintalk came back and I think some folks just stayed with Neurotalk. Hope this makes sense Pete, I just took an Ambien and am getting pretty dopey(or should I say dopier than usual!)

I do miss some of the spirited, interesting and intelligent exchanges we used to have and I think between people getting a bit too sensitive or others being overly critical or nasty forced the Mods to have to drop the hammer a bit more. This makes everyone now feel they have to be so careful with what they say I think it has taken some of the edge and personality out of this forum as people are now concerned about having threads closed or being banned. I miss so many folks who used to be here all the time like David and Blondie and Key West Willie and Wade and Ronnie/Yvonne and Beachbrat, etc etc. Although, I do like to think they are all doing so well they don't have a need for the forum anymore(Although David(C4quadinc) did pop up for Christmas.)

As Kim mentioned, losing the archives has left a hole too. We used to be able to research all kinds of info because the archives were huge.

Sorry for droning on so...you just made me nostalgic for the old BT days.
Lets just hope people have less pain and they don't need the forum so much.

Have a good night Peter...all my best, Diandra

[suede]

Peter,

Your right about how slow it has gotten here.

After the last crash many moved on and right before that there was a lot of serious conflicts going on and I believe a lot of people are reading but have given up on posting for fear of both.

Linda

[slipnslide]

Peter,

Your right about how slow it has gotten here.

After the last crash many moved on and right before that there was a lot of serious conflicts going on and I believe a lot of people are reading but have given up on posting for fear of both.

Linda

Linda,

I happen to agree with you & Diandra on the negative behavior that was apparent right before the "crash". Everyone has the right to express their beliefs on here without being personally attacked. It's sad that it got to that point and may have pushed people to feel uncomfortable posting any more. It's a shame because I'm sure that not only would they benefit from it, but all of us here would have too....if for no other reason than to not feel so alone.:cool:

Best wishes,

Kim

[ErinENj]

As one of the people who was here before the crash, I completely agree with you Pete. I think the crash was a piece of why the board is a little different from then to now, and I think the situations that were going on here was another big piece of it. I can remember days where I was afraid to post for fear that saying hello to someone would get me nasty words in return, or avoiding threads because I just knew it was going to turn messy. I had started to spend some more time on other boards and the crash really just pushed me over the edge to where I moved in other directions. And I think that may be the case for a bunch of the old members (I don't know for sure, but that is something I think may contribute to it).

Like everything, this board has trends. One month, there'll be dozens of posts, at least ten or more new threads each day, and then the next, there'll be no one here and the board will be practically dead comparatively speaking.

I really hope that the board comes back around to what I may call the 'glory days.' And I do keep my eyes open to see if some of the old names I remember pop up on the board. There are definately some people I miss from here who brought such great things to the board. But, I am happy to see that we have a lot of new members, new people to get to know, as much as I wish they had no need of it. I think if the crash hadn't happened, there'd be a bit of an easier transition, simply because anyone who wanted could go back and see how the board was in the past, the types of threads that were posted. It may have helped keep what I remember as one of the biggest threads each day, the roll call, here on the board for example.

No matter how many people are here, whether they are old or new, it is fantastic to have somewhere to come like this, where I know I can find the help I need from people who can understand my position. I don't know anyone at home who suffers from CP, so this is the only place where I can find that support that can only come from people who understand in a way someone who has never had this kind of pain just can't. This board has become an important part of my life, and while I'm not as involved as I would like to be or as I was before the crash, or even before I started working, it's still plays a huge role in my day to day. And it's a role that couldn't be filled anywhere else. I've said it before, and I will say it for the rest of my days - this place, and everyone on it, has saved my life. I know that I would have made mistakes that could have killed me without the sage advice and counsel I received here. Before finding BT, I made the biggest mistake of my life in having my second surgery, something I am positive I wouldn't have done if I had had the advice I would have gotten here. And I haven't made what I call a big mistake or stupid move since. Hopefully, I'll continue that record, and I hope that I can help someone else in the same way everyone here has.

[Pennylane]

I know I don't post much, but that's only because I'm not comfortable yet with posting I guess I am afraid I will look stupid or be made fun of asking a dumb question or something lol it's just a me thing has nothing to do with the board.

but I do enjoy coming here everyday and keeping up on everyone even though I may not post all the time I feel there are so many more out there that have and know so much more then I do. that I need to post even what little bit I have to say does make the person feel alittle better just the fact that someone takes the time to post. Cause I know that is how I feel. I guess just being shy in person I am shy on the net as well.

I also remember the days of a full page or 2 of new posts or reply's even and we will get back to that point one day. I also miss the archives.

[Mark N]

Pennylane, I just wanted to encourage you to come around more often. Don't worry about being ridiculed as it doesn't happen around here much any more. That is one thing better about the boards than before.

Back when the forums were in the very early stages [1998 for me]it was a rough and woolly place where it was common to be ridiculed, attacked, and flamed. The board moved fast, was fun and interesting but you had to have a tough skin especially someone new to internet forums like me.

[gizmogirl]

I agree with the many people who say that this place can save your life, and there are people who will check in and help you if you have a question. I'm very impressed, although I'm sure being dead for a year will take a long time to recover from.
This being the first bulletin board I ever saw worth (well worth) using, I have to ask if there is anything anywhere near this good anywhere else...someone mentioned neurotalk?
Also, to your original question about whether man has evolved to walk upright - I read something really interesting (it's all still theorizing, including that we haven't evolved enough) in the New York Times recently that said perhaps the reason that we developed big brains was CAUSED by us starting to walk upright! Although we weren't as fast as many animals, walking upright let us do it all day long, which meant we could tire out animals much bigger than us! And tracking and so on would have continued causing us to think more! Just a theory, but it sure does say that maybe we'd have to be dumb as doorposts to avoid back pain! Ah, life is certainly stranger than fiction, hmmm?
Jane

[BrokenBladder]

As a member before the big crash I believe that BT has gotten better since that time. I do wish we had the archives back, but at least we don't have the bickering that used to go on.

I think that given time BT will be better than ever. JMHO!!

[Peter B]

Hello All,

Mark, I agree that, as in many areas of life, chronic pain and all it encompasses has its peaks and valleys.

Diandra, I've been around since '99. It's true that there used to be times when the friction here would simmer and all too often reach the point of boiling over. The sad thing is, most of these "fights" were merely examples of how childish adults can act.
You made me chuckle with your "dopiness". The only older member you mentioned that I'm not familiar with is "Beachbrat".
I know what you mean by feeling nostalgic. Sadly, that nostalgia is often accompanied with a feeling of melancholy.
Anyway, Diandra, I think you're an adorable sweetheart.

Linda, I completely agree.

Erin, I know first hand what you mean by finding, at least, a modicum of solace here. Most of the time we go through our issues by ourselves. I would even go as far as to say that even when we DO meet someone who can relate to us, due to similar experiences, when all is said and done, our conditions and all they represent, both physical and emotional, are experienced in abject solitude. Sad.

Jane, What do you mean "being dead for a year"?

Lisa, Hi. Hope you're feeling well. How are you progressing with your issues? Have you seen any Drs. recently? I want to thank you for the talk we had. It's timing couldn't have been better.

Pain free days,
Pete

[The Sand]

Hi, I read here but haven't introduced myself because things went so badly over in the aneurysm area of this forum that I started having nightmares - about stuff that was said. I cried (which is embarrassing really) over certain things that happened over there. The moderators have helped a lot but you still don't want to put yourself out there... it makes you "pause" and think "is it worth it?" So, you just end up reading - and posting nothing....

Just so people know I had a ruptured aneurysm which was clipped. The CP part is severe endometriosis and fibromyalgia - most days are spent trying to find the right drug - or combo of drugs - so you can at least pretend you are okay - which you are not.

Sandy

[Jo6]

Pete. good topic. I have been around here since '98 or '99. I used to go to Sanctuary a lot, but I also came here but didn't post much. Sanctuary I'm sad to say was almost destroyed and I had to divorce myself from the forum. I use it now and again and it is much better. I miss some of my OLD friends and like meeting NEW people.

Same deal with the Spinal Forum. I go there but don't post very often. My my, what has happened to me? Jo The Motor Mouth":eek:

This Forum has come a long ways from the back-biting and acting like children. I truely appreciate the people that come here to CP. I still don't post much, I'm afraid I don't have much to say or am afraid I will offend someone. That is my greatest fear.

And Mark, it was a rough place back then. the few times I did post I was attacked and I left, swearing I would never go back. I'm so glad it isn't like that now. I've learned much here and I would love to help others, but afraid it won't be taken well.

It seems we all feel the same, want to build up the Forum, continue helping others as they have helped me.

This has been a very hard year and I do hope 2008 will be better for us all. I have had so many deaths in my family I am afraid to breath. An Aunt, A niece, and newphew that was murdered:( Almost lost my sister, now I lost an Aunt a few weeks ago and now her husband died this week.

This last ones were in the same NH that my MIL is in, it was her last sister. They both had/have Alzheimers but sadly didn't know each other. It was MIL's BIL that has died this week. Hospice is helping with MIL no matter she is in a NH. I'm afraid her time here on this earth as we know it will not be long.

I have been so broken hearted and sad. How could I have missed my brother??:confused: I guess he was the first. 10 years older than me, but we were very close. I do grieve for him so much.

You all have been my Rock, whether you knew it or not. I know all of you have had heart aches just as much as mine and I do apologize for sounding so selfesh. When I read things that some of you have and still are going through my heart hurts for you.

We can have a good imformative forum here. It would still have room for the emotional side of all our problems.

Thank you all for being my friend and have helped me get through some of these bad times. I love you all, Jo

[debhun]

I don't know about in the day.But I can tell you this is the only place I come to. There is no onther place but home and that is BT.

Deb

[Peter B]

Jo,
I just wanted to pop in and say that its always nice to hear sincerely heart felt posts. Thank you for your words, not that they were directed at me but its nice to here the honesty.

Pete

[Bobbi]

I've discovered that it's just more helpful and healthful for me to discuss some things (in-person) with my CP management counselor. I like the immediacy or live-time input that's afforded.

[Kandra]

This being the first bulletin board I ever saw worth (well worth) using, I have to ask if there is anything anywhere near this good anywhere else...someone mentioned neurotalk?

I know I'm coming in a bit late to this discussion but I too was here years ago when literally every couple hours the front page would be changing due to all the messages. Before the big crash it did get a bit...well, some people weren't nice. This is the 3rd time over the years that I've had to re-register..which I did a bit ago. I do recognize a few names, but most are new.

I just started a new forum, nothing on the order of this one and since it's new, it's small. If anyone would care to drop by and help get it going, the address is www.fwpsupport.com and I'd appreciate any suggestions.

We do have real-time chat :)

I haven't heard of neurotalk, so I'll read on! :)


Kandra

[hummer]

I still come to Braintalk every day.....I don't write very often....I have a brain injury...spinal injuries, but the memory loss, and brain function, cause me the most pain....that is an emotional thing....I had memory loss.....with that came side effects....too endless to list, but the one I had most trouble with was a feeling of connection....

To have a family and know they are your family, but have no sense of history, or connection, even as they sit there before you...as you face your own self in the mirror and grieve for a loss you aren't even sure you can grasp is a horror, I can not define.....

So I looked elsewhere...to find something that would work for me.....a doctor told me of this place....I came here and through the written word and expression of Soul defining moments I used this place to anchor my Self....that nucleous...I strived to grasp....I felt found....I called the people here my collective brain....my collective Heart...because I did feel a connection....something to hold on to.....I lived in fear.....the fear of falling into the void of nothingness.......

This place gave me an island.....a bit of peace....a place of understanding....something I could not find any where else....a place to trust my own thoughts.....I created relationships that far out weighed any in my face to face life.....and then, people I tethered my Self to, from this place, began to be gone....

I felt that this place was created for people who were damaged....on mind altering medications...recommended from institutions of healing....created for that purpose....carried on by one man and those who assisted him....I think of the oath.....first do no harm.....isn't everyone here, because they have an illness, or injury of some sort....maybe I see the world in different patterns, but people began to be banned....for reasons I could not always grasp...I was even banned for mentioning a name....David reinstated me, saying it was a mistake, and wrote me a wonderful letter filled with kindness to me.....

But.....

How ever foolish it may be to a brain that has function.....mine again faced loss....the jerking away, in one moment, of all that I held as my center...only now I had the horror of memory.....the knowing of what was lost.....You can not fathom the devestation that caused to me......did David's kind words to me help, yes.....but they could not take away the understanding that I was once again vulnerable to loss......so fear returned to me....

An understanding, on some realm I hadn't grasped before, about the reality of this place I called home.....and then it was gone....all of it.....no explanation.....just gone.....to some it may have been sad....to some it may have been irritating...to some it may not have mattered very much.....to me....it mattered....in ways that again changed my Life.....Trust is such an oddly structured essence.....especially in my Life.....

No where else is the same....and the people who talked to me that I cared so much for, are just gone....there are a few that are here, but not the many....and fear makes me silent....I had horrendous stress and wrote a long message a while back and found my words sensored.....After all we endure I was to be reprimanded for a word.......I just erased them all........and I grieve....because from where I once found a voice.....I find a silence that screams within me....

I know.....I know.....Things Change......it is a hard one for me to grasp.....

Blessings on us all......

[911]

i have been coming to this site for a long time , i to dropped out for a time but the people here are great and jo if you ever have something to say to me concerning one of my posts i certainly wont be offeded so please speak up , i to love the people here you have all listned to me whine and cry at times and listened when times were good so thank you all very much ,,,,,,,, Dave ,,,,,,, aka ,,,,,,,,, 911

[houghchrst]

When I load up Firefox BT is what opens. I check mail then come here. A lot of times I don't post but just read. I am so grateful to be able to come here. When I first joined before the crash I may have posted maybe 3 or 4 times though I lurked often. I was afraid to post due to some issues with rejection and feeling stupid, useless and helpless but everyone here has been wonderful. I am glad I missed all the backstabbing and meanness because I would have missed out on meeting all of you and others who have made me feel welcome. I find that here there are days when I can barely keep up with posts and days when it seems like a ghost town on some of the forums.

[Kandra]

<snip>not fathom the devestation that caused to me......did David's kind words to me help, yes.....but they could not take away the understanding that I was once again vulnerable to loss......so fear returned to me....

Hummer,

You're very eloquent...and your post makes me very sad that you went through all th is..even though I wasn't here at the time this was occuring to you, I'm very sorry that it did.

No where else is the same....and the people who talked to me that I cared so much for, are just gone....there are a few that are here, but not the many....and fear makes me silent....I had horrendous stress and wrote a long message a while back and found my words sensored.....After all we endure I was to be reprimanded for a word.......I just erased them all........and I grieve....because from where I once found a voice.....I find a silence that screams within me....

Of course nowhere else is the same, this was home to you. However you can try once again to go forward. I know fear is making you silent, but I truly hope you can work through it as I think you have much to offer.

I know.....I know.....Things Change......it is a hard one for me to grasp..

Change can always make one fearful...even good change (not that this was a Good one!), but it's how we get used to things...and then a dreaded Change.

I sincerely hope that the silence that screams within you finds a voice, as you need one. I also hope you start posting and forming new relationships with others. No one should be alone in their darkness.

Kandra

[Jo6]

I was glad to see you post recently. I have missed you greatly. I stood in awe of your words that seemed to just flow out of your month into this room.

Many times I would be in such depression , just reading your words would help me help my self.

I recall you saying earlier that part of your post had been taken and you didn't know why. I looked until I finally found a deleted a post from you. I didn't see anything wrong with your post to start with, but alas, I don't have the power to change anything.

Please stick around and lets make a good forum, helping others and getting help for our selves. I see this as a need to go forward. I am very glad to see you. Please be well, Jo

[simby]

i must say, other boards that i belong to are really quiet now, too. Not sure why as, on some, this time of year is usually busy.

anyway, i know i don't post much anymore and i really don't know why. Juat changing and searching inward.