I believe this is not only my feeling, but that of others... Some sense a 'club-iness' going on. At times I feel it too well. I have long tried to ignore it but cannot anymore. It is going on, while behind the scenes. Some aspects I do not object to as, there are many here who require additional support or plain old 'cheering' on that which really cannot be done publically. What is bothering me is the assertion at times, by SOME, that THEIR pain is more important to others. Well, in THEIR world, yes it is. In the whole of the fabric of the world it is not.
To those who have pain more disabling than the 'rest' of us, maybe you should get a wake up call or three by reading all/ALL the posts under Parkinsons, Spinal, MS or Chronic Pain! Keep in mind, that many of us plain OLD HURT in a whole host of ways! To be bluntly and crudely or blatently honest, I have found other outlets that are much more sympathetic to those of us with multiple chronic pain issues. Many posters there also post here, but seemingly less often here. You who are arbiters of who goes or stay, take a good look at yourself... [as Johnny Rivers said in the early 70's] and find the answer.
I think you would have to read thru ALL my prior posts to get an inkling of the constant daily pain I live with. I despise the boards where everyone goes HUG-HUG we loove you and you'll be fine...I Learned to live with my abilities/disabilites on my own, before I found any support here and at first was rejected [on the prior board-unmentioned] because it did 'not fit' here. I do not believe I have but once bleated about my pain or the pain levels. Few responded, as few could relate.
I am finding fewer really good people who can contribute or in need contributing due to a few distinct personal opinions...As one who has been the beneficiaray of 'incorrect opinions' in the past, to much physical damage I find myself one much inclined to not post other than the most basic informations PUBLICLY any more.
I would like to believe that I have never combined my opinions with any of the facts about PN or any immune illnesses. I state my opinions separately from any facts I have found. I present the papers, resources, notes and research separately from my opinions to allow any one person wrestling thru the PN diagnosis to read and come to their own conclusions. New key Informations for old timers has apparently gone 'unread'. Unless 'recycled' under their nomes de plumes. I don't care about that..per se, just that it gets SPREAD..? I do find, tho- others proporting postions that advocate philosopy of MY WAY OR THE HIWAY in more than one circumstance -somewhat disconcerting under overall aspects, no?
Sympathy for those who have no back up resources is apparently 'unread' as well. What goes around, does, DOES come around. Think hard on that. It could be you next. I wake up every day, wondering about me. Sympathy, empathy, action. They go hand in hand really. Either next door or miles away. Dr Oz Or Oprah ain't gonna cut IT??? Frankly are they even gonna get yer mail? NO....Let alone pay yer bills when your disability is cut off. NOOOOOO. You don't know how to VOTE or advocate for your/our Cause? Go live under your rock! PLEASE!
It is likely that I may 'bruise' a few feelings with this post. I frankly do not care one way or the other. I follow my own conscience, and it is proof in the actions, not in the 'words'. I hope that my mere words here, and actions in other ways have shown that I can be true to my commitments. I fear others may not be, or maybe they question their own actions? I am like Don Quiotes' sidekick...always there patching things...I truly wish I were not riding an *** in the process? - j

ive read your post a few times and feel that you are trying to say something important but to be honest i dont understand some of what you are trying to say. as far as pain goes, i think a lot depends on the person as to what they can take and how they rate it in their own minds. the worst pain i have ever seen is in the burn unit. i hope i never have to find out if i can take that level of pain.

Um, I found your post confusing, but that was probably just me because I am REALLY brain fogged tonight. Still, I'm going to try to offer a few thoughts.

I have found your replies to my posts, and indeed, most of the posts on this forum to be helpful. I'm still trying to learn about the whole neuropathy thing and due to cognitive dysfunction don't retain information well, so I do sometimes have to be told the same thing multiple times.

I do wish I could be more helpful myself, but my computer time is pretty limited due to pain and fatigue (and I'm sure most people here can relate to that). So even when I want to read all the new posts and chime in, I end up choosing just a few and replying only to those where I feel I can contribute something worthwhile.

On a side note that may be off your topic, in past years I actually did contact Oprah's show multiple times to try to convince her to do a piece on invisible chronic illnesses. They are not interested in anything that doesn't have a happy ending. And even though there are many many people in horrible pain that have done great things in their lives, the healthy world tends to see disabililty to be too much of a "downer" and something that of course will never happen to them.

Um, I'm not sure where I'm going with this. I'm still confused.

fanfaire

--could you clarify?

I don't think we're particularly "clubby"--all boards have some of that, but compared to others I think we're relatively accomodating.

There are times when I do feel I should tell some people--usually newbies--"slow down, tell us what's going on with you, what docs you've been to/tests you've had; we may be able to help but we have to get a clearer picture of what's going on". I don't say this on the boards generally, but may send such people a private message. Don't always know what perception that gives, but I think it's important in enabling the other members of the board to do their thing.

People who have trouble doing that--and I realize not everyone's equally computer savvy, or articulate (and I've written in the past that we may have a bias towards articulation ability) may not get as many, or as useful, responses, but I don't think that's due to any purposeful exclusionary desire; it's more due to being unsure what to say, or how to approach the post.

Does anything I've just written speak to anything you were trying to bring up?

Is this in response to an email that went out privately yesterday?

I am not going to respond to it...or tell who is doing it. It struck me as a bit childish, in fact.

By coincidence there is a good article that DocJohn has posted on the Health News forum:

http://neurotalk.psychcentral.com/sh...ad.php?t=31687
Read the whole article...it is interesting.

I have always thought this is a very nice forum. Compared to what I have been through on the net it is heaven--totally.

I agree with Joe--it's all within a person and how they handle what they can handle. I also agree there is always someone worse out there, someone I am glad I am not.

I am not sure I understand the original post either, you seem unhappy about something or maybe just airing some feelings. I, myself love this forum. I find info here I can trust. I talk with adults here, not teeny boppers who want to argue over every tiny, little thing. Some forums, there is so much wrong info, I want to scream. I private message people and send them here for good info. If we disagree here, we do it as adults and can still smile in the end.

I think we are all friends and sometimes I read, sometimes I post--somedays I see something that pretains to me, somedays I don't. Sometimes I speak of my pain, sometimes not. I have a very high treshold to pain and if I complain, I am asking for help and I never mean to make anyone uncomfortable, I apologize if I have.

sorry, but I do mean this hug. Deb

I am not exactly sure what you mean. I can only hope that somehow I have not contributed to your unhappiness with whatever is upsetting you on our forum.

I didn't get any kind of private email, so perhaps I have played a part in this. I don't know.

I do know it is extremely hard for me to cover all of the postings and respond, sometimes because I don't feel confident enough in my knowledge to make a comment, sometimes because I just don't have time to read and comment on everything that is posted.

I am sorry you are suffering so much, just as I am sorry for all who experience this malady we have been afflicted with. I have found the information you have posted and also sent to me to be very informative and helpful and have much appreciated the time you took to send it.

My wish for you today is that your pain is more tolerable and that you know that others here are thinking of you, and also appreciate your input even though they may not be posting responses to every posting you have made.

What I truly wish is that I had the magic potion or answer that could make all of our pain go away.

Cathie

J.,
I just PM'd you.
Get back to me, please

I really regret having to do this as I dont like to interfere in member discussions this way. But I am going to be locking this thread because it is in violation of our guidelines here.

I can see why members are confused here, as I am too.

The purpose of NeuroTalk is to be a self-help support community where members share their experience, knowledge and information freely with one another, in a supportive and caring atmosphere.

Making these kinds of posts, where things are alluded to that most of the members do not have a clue as to the meaning of........and then leaving people feeling like they have been chided for doing what...???

I am sorry but that is a form of flaming and we simply cannot allow it here.
I had no idea that this thread had started last night....no one has reported it, and so, because so many members have responded, and many more have read, I can see it would be futile to now pull it, which is certainly what I would have done had I seen the original post last night.

Joan, you are a valued member here as are all others. If something is bothering you, please come to me and let's see what can be done. But this kind of thread is just not going to solve anything, and instead just makes everyone feel lousy.

If anyone else needs to talk.........my PM and email boxes are always open

I would like to echo that I personally find this PN forum to be one of the best here at NT, and in my overall experience of online health forums. You blend support and caring with knowledge, research and personal experience and sharing into the kind of mix that makes self-help support forums work best. So my personal thank you to all of you...I think you are a great group

sooooo
let's get back to what the focus of this board should be............
thanks
Cheri