Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I was a bit upset earlyer

Good going kevin ......... really apperciate your mail for the fore thought and the intent.

I joined KICK AS just around a month back and really felt like i am home, it was really gr8 being here as good as a family.

We are here not because we have to ... but becuase we love too ....... It is gr8 place to exchange expereince, ideas, concepts and learn. Infact i have a couple of my friends (who are also AS) joined here recenlty (2 weeks now) and are feeling gr8.

Thank you Kick AS .........

Hi, Kevin:



We trade upon the currency of ideas, and nobody--even You --should feel any reservation about posting their ideas, opinions, complaints, venting, or outright churlish humor, but even conspiracy theories (we take notes of who is crazy--and who needs to be watched...) constitute acceptable speech.

The problem is, we should not expect not to hear dissent here or arguments or assertions that we do not like or agree with; it is the very nature of this place.

Someone came her with other expectations and was disappointed. It happens. The price was right (...the cost of one admission is your mind--Joe Byrd) and perhaps there is somewhere a better forum, more suitable to their needs.

We are in business to help people with AS in any way possible, but the reason KickAS exists (both in the first place and to this day) is to offer information that very many people with AS do not even want to hear about.

Although we sometimes have our battles, these have been important and we have all learned quite a bit from each other--not by being ever-so-cute and agreeable Teletubbies but sometimes playing devil's advocates--or even devils.

When this site is exorcised of its devils, and is neither hot nor cold, it will properly be spat out!



I'm sure the the vast majority of members appreciate their physicians and do not ascribe any evil profit motive to them, but the sad fact is that these chronic diseases are not very well addressed or even diagnosed by so many of them.

The stories are countless here of physicians making things worse, but even in some of the most egregious of these stories, there was certainly not a conscious effort on the part of any physician to do more harm than good. Most of us do not believe the physicians' goal is to keep us sick--to keep us coming back for more of the same. But it is we patients, we voters, legal clients, and congregation members who put our trust over and over again in things that do not have any hope of working, or that have never worked for very long--if at all--in times past.

We, as patients, are just never told of the long-term impact of things we are programmed to rely upon. At one time, the side-effects were not thoroughly enough studied--well, THAT is not the doctors' fault.

And our members remain all too keenly aware of the pharmaceutical cover-ups like with a drug many of us relied upon--VIOXX. Was there enough of a conspiracy there? Who really knows the truth?

And another point of concern about not being a moderator or administrator. We mods and admins are usually just ordinary members when we post. I have only on very rare occasion (in fact ONE that I can remember) posted in official capacity; Your posts carry just as much authority as mine or any other mod or admin.

I appreciate Your concern that we might not be treating every new person here with enough support, but as a group we do try, as You just have.

Keep up the Good Work,
John

I completely agree with you john.
I think we all agree that KA community is a place for A.S. patients to share their experience regarding the disease, its impact on their lives and available, effective treatment options including conventional and alternative medicine, diet as well as medication side effects etc. New members should be welcomed and
feel at home here, they should be given hope and assurance that they are not alone and there are many ways to fight this disease, but at the same time they shouldn’t be give false hopes.
It is no doubt a blessing to have access to a wealth of information detailing individual experiences with A.S. why? because it is a proven fact that A.S. is a highly individual disease and so are effective treatment options, that is exactly the reason why we share our experiences with other members.
with respect to pharmaceutical companies and conventional vs. alternative medicine, I think anyone is entitled to share his/her own experience and opinion as well, it is part of individual experience with A.S. that might help other members. I am highly skeptical about pharmaceutical companies but I don't think anyone should be offended by that (except maybe the companies) (call me a conspiracy theorist if you want, any opinion going against the mainstream propaganda is branded as conspiracy theory these days:
“WAR IS PEACE, FREEDOM IS SLAVERY, and IGNORANCE IS STRENGTH”
George Orwell)
I certainly don’t believe that all doctors are bad and can not be trusted; rather I believe that most of them follow their guidelines blindly but honestly in their treatment plans without putting any trust in their patients’ experience. The fact that NSD has never been funded and explored to give it an official face shouldn’t be enough for them to dismiss it.
In a perfect world medical community would be pushing for a study on NSD on behalf of the patients.
When I discovered Kickas community, I was desperate to get information, to hear from people who were on the same boat as me. I am thankful to all the members who share their experience and I am not offended by anyone including those who have opposing views or express an opinion I dont like. I am sure that If it wasn’t for the information posted by the members about NSAID’s side effects and NSD, I would have been in a much worse shape.




Cheers
Alex

To subscribe to the KA forum is a free choice....

To lurk first and test the waters to get the 'feel' of the place is a free choice...

To choose NOT to read various threads or the writings of certain individual posters is also a free choice...

We all come here for different reasons...

We all have different amounts of time free to devote to browsing the forum - this varies day to day, week to week, depending on other time constraints and our *need* to be here...

We are all (well, mostly) adults - or at least pretty civilised human beings (most days)...

It is reasonable to expect that not all posts will be of interest or relevance to everybody...

It is unreasonable to expect that we will always agree with each other...

It is unreasonable to expect that everybody will have the time or inclination to respond to every post they read...

So - come here of your own free will, take what you want/need, give what you can/want to...

But most of all - be grateful that some foresighted individuals set this place up for ALL of us - for our varied needs.

I don't think we need to rename the forum areas "The Pity Party Room", "The Griping About Your Doctor Room", "The Get A Hug Room" etc, in order to not alarm or offend anybody. If we are sitting here reading, we have at our disposal the "Delete" key, and the "Back" key, in case we accidentally step into something we would rather not be a part of.

Adults are free to make choices to read, comment or not.

Thank you KA for providing for the needs of a very diverse group of individuals. What we need to remember is that we are tied together by bodily pathology, not common hobbies, common professions or similar intellect. In real life we might not choose to associate with some others here for lack of a common interest. That's Life. For me - I put on my Big Girl Panties ages ago and just Got Over That Fact.

Have a great day everybody,

Louise

I put on the big girl panties too......








My wife was not pleased

Hmm... I think my big girl panties may be in the wash... or maybe my husband borrowed them... cripes.

Hiya Jeff, no you didn't step on anyone's toes -- we know you care and wish only to help!

That we should try to be as welcoming as we each can in offering support for new members, is something that never hurts to be reminded of, on occasion. (But look out - we may put you in charge of the welcoming committee! ) Actually, I like that we don't have a formal thing. It's nice, I think, that members can sneak in and quietly begin posting or choose to make an introductory post if they wish -- and I love the spontaneity as the community welcomes people in corners of every forum each day.

Thank you for Your contributions Jeff ... and if you get any inspired ideas, pass 'em along please!
mig

No...No...No I do not want to be any part of a welcoming committee...I would scare them off before They got both feet in the door!!!

I don't think I would like a formal greeting, like a form letter. It is not genuine when all someone on the other end has to do is push a button:............and then on your screen would appear.....

Thank you for choosing KickAS,

All our members would like to wish you a warm and heartfelt welcome. Your participation is greatly appreciated. If you have any questions or concerns, please contact Mig.

Again, Thank you for choosing KickAS for all your AS needs.

THE KICKAS GANG

Jeffery - you don't look remotely scary

photo shop works wonders. I asked Mig if she could make my picture bigger since I am so in love with myself......she made it smaller