Firstly I would like to say that all the people with no firm Diagnoses have my sympathy and I do understand what it feels like not to know.My diagnoses took 23 years and I suffered greatly in that time with pain and worry like many others.Those of you who are newly diagnosed with AS are going through a lot of pain stiffness and worry at the moment I know and you think its the end of your life.Well let me try and reassure you its not things will get better pain will get less and you will be able to cope better than you might think.Although my pain has never gone completely mainly because of the damage I have because in the early years there wasn't the drugs or knowledge there is now.Whatever route you may take through this whether it be drug or diet or exercise life will improve.You hopefully will learn to live with it as I and many others have Despite severe Kyphosis fusion and pain I am happy with my life as it is. To me is not something I have it is part of me for life and I accept that and work with it to be as normal as possible.

Prior to Diagnoses although I had a great deal of pain a lot of the time I simply got on with my life in my early years from about 7 till I was 15 it was pretty crap being in pain having surgery taking drugs and not knowing why I wasn't like my mates being able to run round climb trees (Although I did still do it)without being in pain and feeling stiff having time of school because of feeling so ill and Doctors not knowing why.
But when I reached 15 and started working and having money to enjoy I wasn't going to let my life be ruined by pain my life from 15 to 30 was fantastic I did all I wanted Motorcycles,girls,loads of beer concerts loads of good friends who accepted me even though I was starting to get Kyphosis and in pain I road 100s of miles and had all sorts of fun some best not mentioned on here.What I'm saying is despite having no Diagnoses and knowing something serious was wrong I had a great life.My diagnoses came when I was 30 although a shock at the time I already had bad Kyphosis and fusing was well under way.Even since then I have had a happy life and continue to do so yes I get fed up at times with being stiff and hurting I wouldn't be normal if I didn't but I have too much happiness with my Family to let it get me down .
To the people with no firm diagnoses yet I would say live your life its very short and searching through the net or books for a self diagnoses is not a good idea many diseases have very similar symptoms and cannot be diagnosed simply by reading it.And self diagnosis can be a very dangerous thing I know not all Doctors are perfect and they can make mistakes but if you have no evidence of fusion or inflammation on scans your bloods are normal or near normal then there is a good chance its not AS trust me if you haven't got it you don't want it.That's not to say you don't have something wrong and your not in pain and worried.Remember you have to live life with it whether you know or not and you are affecting the life of those around you as well.
As for looking for understanding from family and friends there's a good chance you wont find it.Its a very difficult thing to understand someone's pain if you don't suffer it your self No one who hasn't got a Disease like AS or RA or similar can know how you feel and we all have different pain thresholds as well so we are all different.
You should look at the posts on here from people like James, Brad,John,Alan,mig,Kat,Wendy,Jimmy,Dear Possi,Molly And many others with severe Disease who are an example to every one how life can be despite the dreaded AS,RA,or any other terrible disease.

I wish all the best Diagnosed or not but DON'T waste your life self Diagnosing PLEASE.

Kevin

Thanks Kevin yes an excellent post, says it all AS is a monster and takes everything from us, thank you for adding perspective here.


England in the final do you think?????

Thanks Alan yes England in the final and I just saw a pink pig fly over it had green spots ha ha ha ha

Great post, it's so true that AS takes away so much from us, all of the doctor appts., lab appts., surgeries, etc. but we must plow forward with everything we've got and fight this disease...this week I have lab appts. Mon. & Wed., radiology on Fri. and I see my PCP on Tues. and Rheumy on Thurs., so as is frequently the case, I'm booked all week...but I do agree that self-diagnosis is not the way to go...and it's so funny you say that, I once read where someone said that the way they concluded that they had a certain disease was by going to all of the different disease support websites and when they found the one they felt comfortable in, that was the disease they had! So no, self diagnosis is definitely not the way to go...

Awsome post. I agree, look at all those who suffer severely and how they make it and learn from them. I have and it helps a lot. My uncle (RA) and aunt (AS) suffer severe disabilities and they manage (mostly, but with help.) I have had it since childhood (pediatrician found it in my brother and I) and been the gambit with Docs over the years. The most knowledgable doc was my first after peditrician. He had it and knew all about it and prepared me to go and face it head on and live normal for as long as possible.(I am so thankful for that, I think it saved me from earlier damage.) In spite of evidence and gene markers ect.. other docs said yes, no maybe and yes again so..it's crazy but unless you are severely damaged a lot of docs just won't concede to AS. Since it often takes so long for the damage to show up it is regularly mis-diagnosed, sometimes for years.(like you) Now I have no doc,but very soon I will be there again, once I find a job with insurance. It's been a slow and steady process for years but I am really starting to feel the effects now. It did not start to severely affect my construction job until I crossed over 40.(But it has always slowed me down and caused problems so I have to inform employers about it up front.) Now I am out of work and nearing 50 so I am in limbo as to what to do next. Pretty sure that I will not be able to continue with old job if it comes back. Time will tell. But I am middle age now so I have made it a long way, but I know some who are completely disabled by their 20s or 30s,(breaks my heart) so I believe you all should face the pain and fear and kick it in the teeth and live life by the seat of your pants as long as you are possibly able, pain or not!!!Disability may come but don't surrender to it until you have to! thank you so much for your very uplifting post!!! so many encouraging words for all!!!bravo.
alan

Thank you Alan so nice to meet you welcome to KA I hope you gain a lot from this site and the wonderful people on here.Its so good to hear that like me you have a positive attitude to life and that you haven't let AS hold you back.I agree with what you say about your job I was working in heavy engineering and kept going till I was in my 40s and then it all became too much.My disability by then was too much to continue to work and I was made disabled.But still lead a positive life doing as much as I can all be it a bit slower.Good luck in finding employment again and like you say don't surrender.

Kevin

Hi Kevin,
I haven't seen one of these posts in a while... it's a good read too. Thank you for the post Kevin. In addition to what Kevin has already said about Self Diagnosis...

While I think everyone has a right to know what's wrong with them, and I don't blame them one bit, problems can come up during the process of self diagnosis. For instance, it can get very frustrating, time consuming, and could even cause some people to obsess over something they don't even actually have, even though it feels like they really do have it. Stress is not good for any autoimmune disease, so you are better off not stressing over something you might or might not have. Self diagnosis of a suspected illness often leads to self treatment of the suspected illness (because doctors aren't in agreement), and experimenting with something that might not be right for you, might interfere or react with another treatment you already have. I'm not saying to ignore that something is obviously wrong with you, but rather don't let it become your life. I know it will be hard to do at first, especially because you might be in a world of pain right now, but try to relax, pamper yourself, enjoy yourself, and take it one day at a time. Doing so will eventually have you appreciating your life as it is, much more than you currently do now. Stress and excess worrying can lead to other health conditions such as severe depression and anxiety attacks which just makes everything so much worse.

If anyone thinks their doctor is wrong about a diagnosis, or lack of diagnosis, then maybe it would be better to consult with another doctor, rather than to take on the responsibility of diagnosing yourself all on your own. Just remember that an AS diagnosis won't happen over night, and in most cases it could take years, so it is highly doubtful that your next doctor will tell you something right away. If you do decide to diagnose yourself, it might also take you years to do too, as your symptoms change from one year to the next, either better or worse off than the year before. There are 1,000's of diseases out there, and more than 200 types of different arthritis'es, so it could be a more difficult job than you might think. Many diseases share some of the same symptoms too, which might have complete opposite treatments. This is why our doctors need so much evidence before they can say you have a 'such and such' health problem.

This site has access to information on dieting and safer alternatives that appear to help many people with 'spondyloarthopathies' and other forms of inflammatory arthritis. So if your current medication isn't working out for you, and if you have some form of spondy or other inflammatory arthritis, then have a look around in those sections of this forum. As with anything else, not everything will work for everyone equally the same. Give it some time though, and don't get frustrated or panic if you don't feel any instant relief. I think they say to give the dieting a fair chance for up to three months to see any results, but I think I have seen people here see results in as little as 3 days. For supplements, my rule of thumb was to give one a try for a month, and if it doesn't work, try the next one the following month, and so on, and so on. Sooner or later you will find something that gives you some amount of relief. Let your doctor know before you try anything first, because he or she might know something very important about you that you don't already know that can concern dieting or supplements. And don't start anything without first checking out other sources on the same subject too.

With all that said. Don't ever give up in seeking a treatment that works for you, but don't spend your life trying to conclude what's wrong with you. I know in the beginning I mentioned that I prefer that people not practice self treatment, but what I meant was I prefer that people self treat a "illness symptom", not an "illness suspicion", which are two completely different things. I just thought I would add that little disclaimer :-) Whether you have a diagnosis or not, Welcome to Kickas.org and I hope you like it here.

Taker care,
James

That's a very good point, James, about treating an "illness symptom" not an "illness suspicion". I think one important thing is to recognize that symptoms can belong to many different illnesses and while we might not doubt that someone suffers from specific symptoms, including significant pain, those symptoms do not necessarily point to a particular disease.

When I first started to develop symptoms, my GP and I explored all sorts of possible diagnoses and briefly suspected lupus (SLE). I could check off about four of the necessary diagnostic criteria. I found a lupus support site and listed my symptoms and several members reassured me it sounded exactly like lupus. These were peripheral symptoms, mind you, not the most serious symptoms, but the deal was that if you had something like five out of eight, then bingo, positive diagnosis! I briefly became convinced. My first rheumy said abolutely no way and very briefly I was annoyed by that. I thought, I don't want lupus but if it's that then at least I can deal with it. Since then I've thought, boy, I'm glad it wasn't that.

I went back to the lupus board and told them that the rheumy said no. I immediately got rousing support from others who declared that rheumies are useless and go back and demand a diagnosis etc! Fortunately, I came to my senses and tried to be more objective. If it was lupus, it certainly wasn't a classic version. So I decided to wait and see how things developed.

Changing my perspective helped enormously. I got less obsessed and as the weeks went by other symptoms developed which led to a tentative diagnosis of AS or at least an autoimmune disease. Then it became clear it wasn't AS, - no spinal involvement, which I've since come to realize is THE key symptom of AS that distinguishes it from other autoimmune arthralgias. Finally, the classic symptoms of RA showed up (hand and wrist involvement etc.)

This experience has influenced my attitude to the process of diagnosis. I'm much more cautious now about self-diagnosis and "influencing" my doctors to try and convince them. I think time will tell.

In the meantime, I have huge sympathy with everyone who suffers symptoms that make life difficult. Chronic pain is miserable and can be hard to comprehend, encouraging accusations of malingering. I'm sure everyone at KA understands and sympathises with people who are suffering while those around them don't understand and don't care.

James, you really hit the nail on the head with your comment about seeking safe treatment that works without spending your life trying to conclude what's wrong with you.

Hi James,
Thanks for that and adding all that extra information you are so right if you have a definite Diagnoses then its different and do all the research you can to help your self. But get the Diagnoses first so you know what you are treating. Not knowing could do you a lot of harm.

Kevin

Good point Wendy and I couldn't agree more, spinal involvement is THE key symptom...it was what differentiated my symptoms from the symptoms of other auto-immune diseases and brought the DX of AS to me...and believe me, I've seen enough auto-immune diseases in my lifetime, it is so heavily imbedded in my family and has been all of my life, there's virtually no one in my family that isn't afflicted with one of these diseases, we've even lost family members to some of these diseases...but my point is that being so familiar with the symptoms of Lupus, MS, RA, Fibro, I knew that something else was wrong with me long before I got my DX and I ultimately decided to let the doctors handle it, even armed with all of that info and having medical professionals in the family, I knew that I wasn't qualified to diagnose or treat myself...xxooxx

Here are four key symptoms (or warning signs) of one of the illnesses in our repertoire. I'll tell you in a later post what illness they are identified with. In the meantime, if you were using this for self-diagnosis, what would you come up with:

4 Warning Signs:
1. Pain, stiffness and swelling in the affected area
2. Restricted movement without pain
3. The pain is usually worse at night and in the morning
4. Pain during and after movements of the affected area


I took this straight from a medical source.

To me the symptoms sound like they could be AS or more likely RA.
but I could be wrong because a lot of Diseases have very similar symptoms. Do I win a prize.

Kevin

I would guess RA because I have less pain during exercise...by the way, what's the prize?

Even the simplest things can be hard to get right...
At Christmas I was pretty rundown and I felt totally wiped out, my head and face just felt "invaded" and I had a sore throat.
I started out just doing the usual cold and flu drink but still felt absolutely shocking...
Went to docs and it turned out I had an ear infection and sinusitis! My throat was bothering me so much, I had not even noticed the earache - which it turned out was much worse than the throat once the doctor had identified it! I hadn't realised where the pain was coming from. Like when you get a papercut but it only hurts when you've spotted it!!

I have got lots of persistant symptoms at the moment (blinding headaches, moodswings and fatigue being the worst offenders) and am driving myself crazy trying to work out what is causing what - time to get a professional opinion.

I don't know about anyone else, but I don't always like going to see the doctor right away as I feel like I am in there all the time (especially with 3 young children) so I am defo a "google it" offender - this is also partly due to the language barrier though. I like to look up a few things (and translate some key words) to give me an idea of what the doctor might be talking about when I go!!!

Last time I went to the docs after a few weeks of odd symptoms, it turned out I was pregnant with my third daughter... I had prepared myself for all sorts of weird and wonderful things, but not that!!! That will teach me - you would think I would know the signs third time around!

Back on topic to the subject of AS - I could certainly not have worked that one out for myself, as for one thing I'd never even heard of it at that time!

Tonsilitis

I haven't got any...

Well you aren't borrowing mine..........well actually they took mine too, when I was a small child, a grim experience as I recall. All floppy hats and gas, recovery aided by luke warm apparently tomato soup!!Parents weren't allowed to visit so was an odd experience for a 5 year old. What I couldn't understand was that I went in with a healthy throat, a throat capable of demolishing the hottest curry and hardest nut, I came out barely able to swallow, it jaundiced (Oh I had that too) my view of my mothers oft spoke words, "It's good for you our Al" Ah well......

Alan...you would!

Getting warmer

lockjaw

Hi Wendy, my thought - like you said it could be many things

Warning Signs or Early Tendonitis Symptoms
•Restricted movement without pain
•Stiffness and swelling in the affected area
•Usually severe pain at night and in the morning
•Pain during and after movements of the affected area

Hugs
Gerri

Hi Michelle, cripes it is 21 years since we spoke, how are you?

I am as lovely as ever!!!

And I am not a goof.........so there


Wendy yes my Tonsils were very warm from the slicing and chopping, it didnt help that the blood sucking machine became entangled with a sock, thus forcing me to swallow my own self, yes I was a bit hot under the collar...

Noooooooo Gerri, it is a trick question you see, what Wendy is aiming for that which is my second and accurate guess...........Hypothermia....oh yes the points are mine...!

Personally I thought the answer was rigamortis.

I sure hope not...
Life after death sounds a lot better than pain after death! lol

I don't know Kevin, I think it's also dangerous for people with firm diagnoses, with symptoms that present themselves clearly through imaging, blood work, etc, to give advice to those who do not.

I would want to avoid a discussion about which type of sceario is worse, those with absolute DX's or those without, but I can tell you that not knowing is its own particular brand of hell

I don't want to bore anybody with my whole history here, but I WILL say that my own research over the 24 last years, since the day that my right SI joint started hurting big time, has been key to my progress, and I would NOT want to take myself off my team of medical advisors.

And add that there were a bunch of middle years in there, when doctors were just kind of shrugging their shoulders, suggesting that if they didn't see any hard medical evidence, that there wasn't anything there.

So I just slogged through it, "lived life" or as Wendy put it, "seized the day" as best I could, literally limped along, kept on working, just kind of hoping that things would get better on their own, when I was with other people, would just kind of pretend that I was fine.

Then one day I got in my car, the pain hit me so hard as I sat in the seat, and I realized NO, I CANNOT accept this.

Was I angry at those doctors who likely missed key symptoms, maybe didn't order the right test, or maybe just not all that bright to begin with?

No, I was angry at MYSELF, for spending the last ten years or so, working on TV shows, writing music, etc, because maybe, just maybe, if I had concentrated on following the remaining ideas and looking under the rocks that hadn't been uncovered, maybe I wouldn't be in so much pain today.

And maybe if I do some research today, I may or may not find any answers, but at least I won't be angry at myself for not trying, 20 more years from today, if I reach 74.

For some of us, exploring some whackadoodle theory, like noticing that our pain gets worse on Tuesdays, but better on Wednesdays, and we might post charts, graphs, etc, to support that, and we seem to be close to concluding that we have the dreaded disease of Tuesdayitis? Scoff and laugh you might, but it might be our best theory at the moment..

So am I suggesting a little more understanding, a little more patience, a little wider berth from those here who have clear DX's to those who don't?

Yes, I am.

I hear you, dow

Yes Dow in case you hadn't noticed I went 23 years without diagnosis so I do know what its like and I went through very severe pain when at times I had to be carried. And its far less dangerous for people with a diagnosis to try and help people.I would never diagnose anyone's condition I'm not qualified to do so.But I also think it is not good to do self diagnoses there are too many conditions that can have similar symptoms and to argue with Doctors that you have one thing when you could have another is not a good idea.You cant blame Doctors all the time AS can be difficult to diagnose as can RA.
And don't tell me to be understanding and patient my knowledge is from pain and suffering AS for a long time and I have already said I understand and sympathy with people who are not diagnosed and know the frustration they feel.All I have said is its not good to get to the point of obsession were your life is spent trying to find an answer in books and on the net.Life is what you make it and very short as long as your getting treatment and its helping have the best life you can.
And to say to have a wider birth between those who have a diagnoses and those that don't is the most ridiculous comment I've ever heard.

Oh dear, cocked up my reply there...

I was going to continue...

I can remember being in "hell" as you put it, when I had no DX. I had symptoms which were crippling me and taking over my ability to function in my job and personal life, and yet no-one knew what was wrong with me.

I could not understand how my symptoms could be so extreme and agonising with no explanation being offered to me?

How can you get better if you do not know what is wrong with you and what will either help you or make you worse.

It's very frightening and you feel very vulnerable and out of control.

But even with a DX it can still be a minefield.

My AS went into remission for a long time and when it hit back I had great trouble recognising what the problem was. So often, I either have symptoms and don't realise it's my AS or I put things down to AS and it's not that.

It's all very confusing.

The main feeling I have is if anyone needs support we should try to give it.

Hi Tink,

You've raised a good point that I'm hoping others will clarify.

What do we mean by support?

Does support mean that asking questions about statements that are posted on KA is not ok? Is it unsupportive to question assumptions or misinformation? Is it unsupportive to suggest other ways of looking at things?

Or is support supposed to be unqualified belief in everything written in KA?

Is it ok to disagree with people?

Does questioning someone's diagnosis actually mean you are not supportive of that person? Or could it be seen as helpful to suggest other ways of thinking?

Is support just "there, there" or can it be intelligent debate?

Just wondering how others perceive this...

You're the clear winner, Gerri! But when I read that, I was struck how that description could apply to so many here and it reinforced the danger of trying to diagnose from the printed word.

My last rheumy spent a long time feeling my joints. He was looking for a "spongy" feeling you get from hidden inflammation. You can't get that from books or the internet.

Wendy

My initial reaction to that would be:

Supporting someone effectively requires an understanding of what that person needs. That could be any number of things - a straight answer to a straight question, a gentle push, a big kick up the AS! ,a shoulder to cry on or a voice of reason etc etc.

This is almost impossible to do unless you are face to face, in my opinion.

I have been trying to support someone from a distance (over the phone) over something ongoing and painful. It is hit and miss to say the least.

When I have been in the company of this person, however, and am experiencing first hand the emotion and day-to-day living with the problem, my perceptions of the problem and way of supporting the person are completely different. Not to mention clarity in what is appropriate and needed support.

I always think if in doubt... ask lots of questions before you jump in with both feet and potentially flatten someone - so to speak.

Bad advice can be worse than no advice at all.

Always be sure of your motives.

Never underestimate what effect your words can have on others.

Ok, that's it from me.

Good points, Tink. I'm hoping others will jump in.

i hope i stay on subject here..
my take on this subject also with some thoughts on your all's replies.
i think this disease and others like it are a living nightmare that we cant awake from. Dx or not, pain is pain, support is support, even if its not the answer/reply someone is seeking.
we all have the right to live our life the way we want [to a certain degree...you know what i mean]. if that means we doctor ourselves with knowledge/research, look to 'professionals', or a combination of both. what ever fulfills us is what we should be doing. in the end...all that really matters is ..'are you happy?'

also, the fact that most of us have been failed by doctors at some point so its, i feel, only natural to seek your own answers. the only one who truly knows your pain is you and its instict that we fight for our survival.

Thanks, Wendy.

Just thought I'd see what the word actually means...

Dictionary definition:

I couldn't agree more...as long as that happiness does not infringe upon the happiness of those around you...

Hi Wendy:

I've asked my good friend Tarzan to swing in here, and give his perspective to those questions you just made, and added two more, relevant from earlier threads:




TARZAN: QUESTIONS GOOD! OTHER WAYS LOOKING, GOOD!



TARZAN: TARZAN NOT UNDERSTAND QUESTION!



TARZAN: DISAGREE GOOD!



TARZAN: QUESTIONS GOOD!



TARZAN: TARZAN NOT UNDERSTAND QUESTION! WONDER IF WHITE WOMAN DRINK FIRE WATER?!

(new question):
Is it okay to characterize someone else's illness as "moderate" "severe' or "slight"?

TARZAN: JUDGING BAD! OVER INTERNET, MORE BAD!!

(new question):
Is it helpful to suggest to other people that they should stop searching for their own diagnosis, and simply enjoy life?

TARZAN: TARZAN SAY EACH MONKEY MUST MAKE OWN CHOICE!!

Dow, are you reading the same posts that everybody else is? It's gotten so radical here that you can hardly say anything anymore...how are we supposed to talk about AS if you get mad everytime we talk about AS...

Hi Wendy,

"I was struck how that description could apply to so many here and it reinforced the danger of trying to diagnose from the printed word."

I have MS & Lupus symptoms and tested positive for the definitive test for Lupus (had high DsDNA). Found out recently that Porphyria, is the only other disease that will give a false positive for the definitive test for Lupus. So many of the autoimmune diseases are so intertwined.

My MRI showed no MS lesions. My neurological symptoms are common for MS, Lupus and Porphyria. My Lupus symptoms - the malar rash, the false positive test for Lupus, and many others are all common with Porphyria. My doctors are stating that most likely I have Acute Intermittant Porphyria, with porphyria of the skin. Until Megan mentioned Porphyria, I had forgotten all about my sister diagnoses of the disease. Then I did research, and then mentioned Porphyria to my Rheumy, who ran with it.

Try to get a diagnoses when doctors try to use the written word to diagnose. Not many doctors know about Porphyria. Many doctors see my symptoms - so I get bounced back and forth with the Lupus and MS testing. Finally I believe I am on the right track, even though I might have to go out to Alberta, to a specialist for Porphyria (specialist away to Africa until end of June) and my Derma unable to do UV testing until end of November.

My Spondylitis has been diagnosed. (PsA or AS) still up in the air. Likely going back to AS. Have visiable damage at the SI joints, and I am HLA B27+.

Hugs
Gerri

I keep looking at Kev's post and keep thinking...my names not in there...my names not in there..sheesh you think you know a guy, tell him your deepest darkest secrets and he tell me I am his BFF and then when it comes to putting it down MY name is no where to be found...maybe I will respond to the post later once I hit the names I simply could not get past it

You're not alone Lisa, I must admit, I thought the same thing...

Im sorry Lisa your name should be there a slip on my part I will make it up to you.

Hi everybody - This is my first time here because I have no dx of AS altho most of its symptoms. I'm on a fact-finding mission because most of my docs have outruled AS based on a negative HLA-B27. I read the first post and thought... oh, how ironic. All of you bring up good points but sometimes I feel that those who have a firm dx have the advantage. Disease is stressful enough and then add the stress of not really knowing, makes me so [*bleep*] mad sometimes. Is it that you really won't know until your spine starts to fuse?

I have been thinking about this a lot. I fear my post will become a long rant but shall try to keep it to the point.

I see no problem with questioning a diagnosis or symptoms for that matter as long as it is an honest question and not an undrhanded attack on the original poster. For example you question what the symptoms could mean/caused from rather than question if the poster has the symptoms in the first place or severity of those symptoms.

I must agree with Dow, I don't like the characterizing someone else's illness as "moderate" "severe' or "slight".
While those with AS who have fusing may be concidered by the medical community as having a more servere form of AS they also believe there is less pain once fusion has taken place.

I question what symptoms classify you as servere/moderate/slight.
Person (A) has AS with fusion but no heart damage.
Person (B) has AS with NO fusion but the heart has been damaged.
Person (C) has no definative dx, Drescribes servere pain in the SI's and back. Limmited range of movement. And can barely take care of simple duties.

Now even as I write this I couldn't tell you who is the most severe. And I don't feel it is right for us to even try.
We should just accept it for what it is to the individual at the time.

Support mmm I guess again the definition changes with the individual.
Going back to my teenage years now to try and explain how I feel.
I remember breaking up with my First serious boyfriend.
Mum told me all the things like, you will get over it, you will meet someone wonderful one day and you will forget about "bob, Fred, whoever" He was only your first boyfriend and its not the end of the world.
Now this was mums way of trying to show support, but it only made me feel like she wasn't supporting me at all.

All I wanted was for her to give me a hug and accknowledge that it felt like it was the end of the world to me. I just wanted her to say it sucks big time and you have every right to cry.

I guess it is the same here for me. When I am having a realy crap day I just want someone to say I feel for you it sucks doesn't it.

Kevin, you know I think you are great and you have been a great support since I have came to kickas. However when I read your post, it made me feel like I was less of a person. Whilst I understand you are being encouraging and in no way putting me or others down. I just thought I would be honest about how it made me feel. Its so hard when you have managed to do the things you have done inspite of AS that when I have my bad days and aren't able to do the house work etc that I am a weak person and not trying hard enough.

I guess what I am trying to say with this long rant (yes Im sorry) is that if someone is feeling like you/we are not being supportive. Instead of trying to justify ourselves and prove we are being supportive. Just accept it for what it is and listen to how the person is saying they feel. We are all different.

I will stop now. This is just me and my opinion but that doesn't make it right. Or wrong for that matter LOL.

Trish
xxx

Okay, but that's the thing, nobody characterized anyone else as having "moderate illness" or anything else for that matter, where are you getting that from Trish? I know where it came from...someone alleged it and it became the truth although it is not.

Come on Dow, sort it out! If you insist on being so mad and radical then maybe you could take a leaf out of Alan's tree and try including some humour into your posts.

I know that Michelle. Sorry if it sounded like I was saying that someone did. My comment was in responce to Dow and regarding a post on another thread where it was said that (not a dirrect quote) People with severe AS have a visable hunch and/or limp.
Kevin please feel free to correct me if I got it wrong.

Yes, I think I'm reading the same posts!

And I'm not angry here, certainly not because of any mention of AS-

My response is about the diagnosed/undiagnosed topic, and how I feel there has been pressure on some of us to suggest we stop looking for solutions.

Even though we know it comes from a well-meaning and caring perspective, comments like Wendy's quoted below DO have a seriously discouraging effect:

(and this is where my remarks about moderate/severe/slight came from)

Trish I am not putting any one down and I did not characterize any one.I have always been supportive of every one who comes on here and always will be.All I was trying to say was try and have a life as best you can and don't be like some who get obsessed with diagnoses.
I would just say thank you Dow for screwing up what could have been a nice discussion on friendly terms.
It seems to me that no one on here is allowed to have a civilised discussion any more because certain people don't like it ok discussion over as far as im concerned.
I apologise to any one who has been upset by my what I thought was an innocent post.
Good bye.

If you didn't like what was being said here Dow, all you had to do was close the link, just close the link... you didn't have to come in this thread, you were just looking for trouble when you did so...

Kevin, I thought I said that. I know you are not putting anyone down. I can't speak for anyone else but You have always been a wonderful support to me and for that I thank you dearly.

I was just saying that it makes me feel less of a person when I can't get up and do things when others are. I think for many of us it is not just what is posted here that effects our thinking on particular posts/threads/topics.
For me I have had a relative research AS and then turn arround and say well so and so has AS, from memory Australian cricketer Michael Clark has AS and he can still play cricket, why can't you clean the house. I hope this makes sence.

As far as caracterizing anyone. I haven't seen you do this to anyone. Your post the other day, the one I mentioned in my responce to Michelle, got me thinking. I was in no way meaning this to be an attack on you and if you feel it was. I am truely sorry for that.

In essence I do infact agree with what you have posted here.
It is hard though to not be obsessed with searching to find out what is wrong with you when it seams that the pain is completely taking over your life. Even harder when the doctors can't agree on what symptoms rule in or rule out any particular dx.

Trish
xxx

Dow you big trouble maker! How dare you make rational statements based on experience and observation about an important topic and then support them with evidence.

OK, Michelle, I'm closing the link for now, probably good suggestion, my iritis is telling me to do that anyway, pretty much said everything I wanted to say on this-

But that comment wasn't posted on this thread Dow...you hijacked that from another thread...why would you do something like that? I can only think of one reason...

Michelle.
My post was also in reponce to this part of Kevins OP

You should look at the posts on here from people like James, Brad,John,Alan,mig,Kat,Wendy,Jimmy,Dear Possi,Molly And many others with severe Disease who are an example to every one how life can be despite the dreaded AS,RA,or any other terrible disease.

Underlining is me.

It makes me question what defines "severe disease" as apposed to mild/moderate. And based on those definitions, does this mean that some one with "mild disease" should stop winging, get off their lazy butt and go do the gardening or whatever. Because those that have "severe disease" can.

Please, I am in no way saying that this is what Kevin was saying. Only that that is how it made me feel when reading this.
This is only my opinion and nothing more.It in no way changes how I think/feel about Kevin. I honestly think he is great.
I don't wish to cause problems by voicing my opinion.

I think I get it but I was talking to Dow, I think...I'm not sure at this point, but I hope you didn't think I was upset with you...not at all, xxooxx

Hi Aussiegirl and Dow, and anyone else that found this topic upsetting. When I first read through the original post, what I saw was someone concerned about other people making themselves worried sick over a lack of diagnosis. Even if it wasn't Kevin and even if he didn't mention my name I would have thought the same... Or would I? I read it again and still felt the same. Anyhow, I decided to add a little something extra because I wouldn't want to see someone getting worried sick either, more specifically because I've done it to myself, but not over a diagnosis.

Knowledge is best for everyone... I have always thought that way. I have always thought that the best thing for all of us to do is keep informed about our health issues and do what's best for us. However, I wouldn't want people to go through the added pain and frustrations of having to do it all on their own either, including having to diagnose themselves. With the way things are, a lot of us already have done so or still have to, unfortunately. If it were a matter of their personal choice, I would much rather see someone enjoying life than eventually feeling miserable about not knowing what's wrong with them. I understand that not everyone has that choice though.

About the severity part... Having AS is severe business no matter how I look at it. Technically I do consider my self as having a 'severe'/advanced/classic case of AS, but there must be thousands of people worse off than I am (even though my back was assembled with a torque wrench lol). I'm glad I can joke about that now.

I hope every one can see now that my intentions were meant as support, and not to drive people away from getting the support they need or something like that. I'm sure Kevin had the same intentions too.

Take care,
James.

just for the record... i personally was NOT upset by this or these posts. i was merely putting in my 2 cents :]

So we should wait around for someone to diagnose us with AS before we should consider doing anything about it to help ourselves?eg diet, supplements, fish oil etc.*at this stage without drugs because no DR will give drugs without diagnoses.
In the meantime dont worry what "pre AS" might be doing in the way of destroying your joint functions - after all it only takes a Rhuemy about 5 years from onset of first symptoms to "Diagnose" AS. Then everything's gonna be alright because DR got the DRUGS!! and drugs are always the best option....just ask your DR. Pain? what Pain? does pre AS come with pain too? wow, i thought pain only arrived once you get the AS diagnoses stamped on the medical records.

Hey Jet, I don't believe anyone was saying that and if you go back and read the thread again I think you'll see that....so easy tiger

Just read the thread. You got the point James. The obsessing can made a stress and it's not good for us. That's what sometimes happening to me especially last year after i failed my medication and therapy from doctor. I keep trying to find another alternative and found this site, experimenting and do like what it is written here but there still not a result for me not like what others feels. But finally i feel better. But still every time there is something wrong with my body, like today for example when i wake up feel stiff and back pain again. I would curious and ask what causing this. And i plan not to do it again. Before i would just stress out if this happen and regretting myself for a day. And this is not good for us who has AS.

Enjoying my life would be best for us although i found it sometimes not the answer to our problem. This AS really change my life and in the worst period of pain it affect my job or activity so it can disturb and stress me. I need to enjoy it to make it not worse or make the pain gone. But at the same time this AS pain and stiffness can be the cause to why i can't enjoy doing something

I still learn how to enjoy the stiff and pain though. I feel it's easy to live a day when the pain not coming on the day. I become very enthusiastic and happy when the pain is not coming. But when it comes back again, doing several things on the day can be hard

Hi Kiwi, i am as easy as Sunday morning (its a long weekend so i can say that).
* i should have added education as well *
Unless your a Rhuemy, a self diagnoses is nothing more than an impossible pipe dream anyhow - your gonna end up at some quacks office somewhere in the end if you did have AS. AS diagnoses or not pain is pain just ask Jon.

Good post Kevin, thanks.

Back when I was trying (along with 8 other Docs) to figure out what the heck was wrong with me, I stumbled across a definition of Ankylosing Spondylitis and kept right on going. I thought, "Nope, I don't have that." When really I was thinking, "Nope, I don't WANT that!" lol!

So I had to pick my jaw up off the floor when the Rheumy told me that IS what I have. Dang.

Thanks again for the thoughtful post.
-Donette

Hi Diva, Welcome to the forum.
Sorry that your first forum visit ended up being not so great. Don't worry you are doing the right thing by checking things out for yourself. We have all done it or else we wouldn't be here. We actually do encourage people to read up on what they can. It's just that some of us fear that any health problem can consume us if we let it. I wish there was something I could say that would make your first visit a little more pleasant. There are a lot of HLA-B27 negative people here too, by the way.
Take care,
James

Just a note about the comments of spinal involvement being THE key symptom of AS. That was certainly not the case with me. I have had sacroliliitis, knee, ankle & plantar fascia involvement but no spinal involvement. Luckily for me I had all the other classic AS hallmarks of HLA-B27+, elevated CRP & ESR (although only mildly elevated at time of diagnosis), and x-ray evidence of sclerosis of SI joint. If I had been to a doc or rheumy who regarded spinal involvement as a prerequisite for AS then I would certainly have been misdiagnosed or left undiagnosed.

Just my thoughts on the whole diagnosis debacle - I can completely understand why people with AS type symptoms are searching for a diagnosis. I can see how it would be a pointless exersize if there weren't any effective treatments out there anyway but given the effectiveness of the biologic dugs I fail to see why anyone should have to put up with debilitating symptoms when there could be an explanation for them, and more importantly, effective treatments available. Considering the permanent damage that can occur when these things are left untreated there are plenty of reasons to be diligent in searching for a diagnosis. From reading some peoples experiences on here, depending on the individual doc or rheumy, getting a diagnosis can be a bit of a lottery so it could definitely pay to get a second opinion. In a few cases 1 doc says "definitely AS" and then other doc says "definitely not AS". Because most docs are unwilling to experiment with different meds without a definite diagnosis it makes it even more important to get confirmation of what you are dealing with. I also don't see why searching for a diagnosis and educating yourself about different diseases and treatments would prevent anyone from enjoying doing the things that are still physically able to do and living everyday to the fullest. Just my 2 cents.

I agree with you Jroc. After re-reading this whole thread my sense is that the main theme seemed to be concern about the risks of self-diagnosis, not the denial of the need to search for a diagnosis through second opinions. etc.

A secondary theme seems to be around the fear of allowing a health problem to consume us.

There also seems to be some concensus that offering unasked-for advice may not be welcome. I wanted some feedback on what people see as support. I now have a sense that offering unasked-for advice is not considered supportive.

I'm sorry Kevin, that it took you so long to get a diagnosis and hate to think of how long so many people have to carry on before they know what ails them. I wish that all members would try to be respectful in their replies, not post in haste and to try not to take offence where none may be intended. I don't really find it all that difficult to see this from any number of sides.

In all my years here, I don't actually recall a problem arising from a perceived divide between those with a diagnosis, or without; with mild, moderate or severe disease. I can't imagine that there is anyone than doesn't relate to someone else's experience... it is a big boat for everyone!

Maybe I am weird (!) but I think it is human nature to make comparisons and is actually one of the reasons we all find support here. Early on, my rheumy said my AS as 'mild'. It never felt mild. These are medical terms and have purpose. It was after a bone scan (8 or so years after my diagnosis) when my doctor insisted on hospitalising me, that I asked if he still thought my disease was mild and he shook his head - no. Oddly, this was a relief in some ways, because I'd thought to myself, cripes, if this is mild, how bad can it get??? It also signalled to me that my doctor truly understood. Fast forward 15 yrs and I heard the words, "Melinda, your disease is severe."

As I read in KA I find myself thinking, oh dear, that person's AS sounds severe or moderate or mild. Hip replacements, spinal osteotomies, kyphosis, early age of onset, these are not mild! There is a wide spectrum of illness in the spondyloarthropathies, ranging from mild to severe. My brother's is mild, even though his began with heart involvement. He's been in remission for years and requires no treatment. The diagnosis isn't easy and as the majority of members here have probably experienced, a delay in diagnosis is common.

I haven't had a hip replacement, nor spinal operation, nor any operation, no heart involvement, and I'm not nearly fully fused. Members like Alan, Kev, Brad and John, dear James, and anyone who is fairly well fused is not going to view my case as being as severe. Why would they. Hey, I wouldn't if I was them! lol Mine isn't as severe, plain and simple. If someone didn't understand my condition then maybe I'd give some thought to how I have communicated to the group.

I write of my experiences here in the hopes of helping others. It isn't to make others feel less or more important. I do it because I realise how much reading about the experiences of others has given me strength and comfort. It is a unique sense of community. I love to read how others with more severe disease than mine carry on so bravely and still find hope and happiness and laughter in their lives. I love to read about others just starting on this path as they find new ways to control their symptoms or learn new ways to cope or depths to their strength that they never knew they had. And I know what a relief it is to get a diagnosis and finally be able to associate a name to what ails you. I love to see the feedback people get from others when they are worried about some new scary symptom. I would hate to think that sharing makes anyone else feel their pain is somehow less important -- of course it isn't!! Illness can be scary and support can help us put things into perspective and to feel less alone.

When I read of someone just recently diagnosed, I tend look for similarities. I try to read between the lines, often asking questions. Have they suffered iritis, how do they describe their symptoms, how did it start, how restricted are they in their daily lives? I try to form a picture from their words so that I may offer relevant insight or something of value that may serve to help or support them. I try to do the same thing with those who haven't received a diagnosis or don't have a name for their set of symptoms. KA is for anyone who wants to post here or feels a connection or can relate to what we describe and is looking for answers. If I don't feel like I can help someone or feel they have already been helped, I move on to read the next thread.

When I invite suggestions from others members, I appreciate all the replies for the time and caring that someone took to go to the trouble of replying. It always amazes me how very generous some people are. I'll probably find some to be more helpful than others. Like anything on the net, I'll take what I like and leave the rest. If I make a reply in trying to answer someone's question, and I am incorrect, someone will come along to correct me. This is the beauty of message boards. Brad reminded me of this recently and it's so true.

Like in anything, if I really try to put myself in someone else's shoes (well, not Alan's his are way too big!!) then maybe, hopefully I will appreciate where they are coming from and be able to empathize.

How any of us defines support may not be exactly the same yet it is mainly to offer encouragement, sympathy, empathy, or to be comforting, to help, to motivate, to assist or to aid one another. If I don't think I can be of any help to someone, then I won't post. If I think I can help then I will. If I think I can help but someone does not appear to be interested in my help, then I will take the hint and not try to force my opinion on someone.

This is a home for all of us. Anyone who expects to relate to everyone in a community this size, or who thinks that everyone else should be like them, or should only ever agree with them, or should automatically relate to them, post like they do, be interested in the same treatment approaches, or experience identical symptoms or severity -- is expecting the impossible and missing out on what is the beauty of KA; that we are all different and bring a myriad of different experiences that all relate back to living with chronic pain and disease.

If you understand what pain is like and know how it can get the better of you at times, then we should be able to appreciate, that every day, someone in here is not going to be at their best or may be feeling more alone or discouraged. If we are going to err, it should be on the side of generosity. KickAS is a place to offer one another support, if you are not feeling in that frame of mind, just read for a bit.

Take care all.

I hope there isn't such a consensus, because people don't always know when you have good advice available for a particular situation, and so won't think to ask...

In my opinion, you goofed once recently when offering advice, but given the number of posts you've done that is not a bad record. Donette already said that she would miss your advice if you decide to play it safe and only offer sympathy without advice. Hopefully you have since managed to make it up with the person offended, and can move on to many more productive posts until you goof up once again (even moderators are human, eh?)

Wow Mig. Great post.
I would just like to add if I may, that I truely believe it is ok to dissagree with each others post. This does not mean that because we don't agree that there is a problem.

I wholeheartedly agree with this part of your post particularly.
"I wish that all members would try to be respectful in their replies, not post in haste and to try not to take offence where none may be intended. I don't really find it all that difficult to see this from any number of sides."

Trish
xx

Thanks SJLC - but you see my "goof" is still being quoted back at me so I felt that reinforced the fact that my advice was not welcome.

I've actually begun to wonder whether KA is the place for me.

I appreciate your recognition of the human-ness of each of us and Jeffery commented elsewhere on his sincere belief that people post with good intentions. That was also helpful.

Hi Trish, aw gee thanks! x

And I agree that it should be perfectly okay to disagree as long as we can do so politely and with respect. Cripes, I disagree a lot of the time but that doesn't mean I am not genuinely trying to be helpful!!

I even offer unsolicited advice occasionally - ack! Alan really does need to eat more carrots tho. lol

Hey Wendy, I "goofed" a couple of months back myself...remember? I bawled my eyes out over that one and beat myself up big time and wanted to crawl into a little hole somewhere and not come out. What a disaster.

We all do it..it's true we're only human for goodness sake and typing in an internet forum can make our intentions hard to read at times as things don't translate well and can be miscontrued.

KA is definately the place for you..we love & value you.

That's kind, Kiwi. Thanks.

ill say the same as was said to me when i felt like this..dont take away your tile Wendy, KickAS is a better place with you in it.

Wendy, you are NOT going anywhere!!

You DO know that I adore you! As well as everyone else on this thread that I know it looks like I am currently at odds with, including Kevin, (even if he feels I screwed up this discussion) Michelle of course, (even if she now hates me, I most certainly don't feel that way about her!)

TARZAN: TARZAN AGREE!!! KA PEOPLE GOOD!!!

and Sue, naturally, may not always read every word of her long-winded posts, but love them too..

TARZAN: LONG-WINDED!!! HA HA!!

Hey, quiet, Ape Man!!

and just need to add that I'm sorry if I offended anyone, (I too had something I needed to get off my chest)

TARZAN: (BEATS CHEST) followed by (TARZAN JUNGLE YELL)

so with that, good night everybody, off for more Pred drops, talk to you all again tomorrow

I would like to apologise to any one who found my post upsetting I didn't mean it to be like that.I thought it would be good to have a debate about self Diagnoses but I was obviously wrong for that I'm sorry it seems some people don't want polite discussions on here.
I thank mig for her post and all the people who have said they thought it was a good post.
I will tell you why I posted this in the year I have been on KA I have noticed some people becoming obsessed with trying to diagnose them selves and felt this could be a dangerous road to go down.Why
because last year I was in a lot of pain in my shoulder neck and armpit I diagnosed myself as an AS flare and it would go away.
I happened to be at my Doctors for my drugs review and when he asked how I was I told him.So he examined me and said immediate bloods and chest xray didn't say why just come back and we will look at the results.I didn't think anything of it.When I returned he was very happy I asked why he said I'm really pleased your tests have all come back negative I was really worried about you the symptoms you have are classic for lung cancer.So if I hadn't mentioned it while I was there I wouldn't have had the tests and if I had got cancer would have carried on not knowing.
And that's why I dont believe in self Diagnoses.
I am upset at the way Dow insinuated I should give more support and understanding and that people diagnosed with AS should distance themselves from those with no Diagnoses. I have tried to support and help every one on KA both new and older members but this is obviously not enough.
I have my own problems coping with the pain and every thing else that goes with AS I don't need this as well so I don't think there is any point in me being here any more.I am going to stay of now while I decide what I want to do for sure but am fairly certain I will leave.when I have calmed down and had some time to myself I will post and let you all know.I have made many very good friends on here and you all mean a lot to me and I would miss you all.But its time to put me first.

Kevin

Kevin, I am sorry your post was misinterpreted.

I totaly back up what you've said there and i understood your point from the start. That was not a post about how to include or exclude someone from a group, but a point of view of how selfdiagnose can or cannot make things worse for those who practice it.

At your age and with your experience you must know that sometimes we are extrasensitive and it's verry easy to start an argument with someone with AS even with good intentions...

So stop being extrasensitive and let's talk about the main subject of this thread.

KEVIN i think u are great and i totally agree with your post.some people like drama and like to read other things into what you post but sod them,you carry on being the joker in the pack i love reading your post and hope you carry on doing so..respect to you kev your older and wiser than many on hear and your experience is valued

Thank you, Jet. As I said to Kiwi - that was very kind.

Sorry, Dow - my comment about wondering if KA is the place for me was not meant to elicit words of adoration! Although naturally I appreciate them.

The thing is that I try to measure each word that I write - I do write quite carefully without knee jerk reactions, so I found it disturbing to have both my intentions and specific, carefully chosen words, cause offence.

Apart from the brief hiatus on the lupus board that I mentioned, this is the first forum that I've participated in. My husband has belonged to several (to do with metal and wood working) for a long time and I used to think that was strange. I thought, How can you build relationships via an internet board?

But, wow, it IS possible as I've discovered on KA and come to care for so many people here. So the idea of my words creating the furore they did was very disturbing to me and made me question the reliability of "internet" relationships based purely on the written word. That's why I wondered if this is what I want to do.

Anyway, your words of caring to me and others are much appreciated. I've always enjoyed your brilliance and sense of humour.

I AM worried about Kevin right now. Really don't want him to leave and I'm aware that he is very serious about it and has been thinking of it for a while.

Hey Kevin, Napoleon, you know what I think about you. If you conclude that you really are going to leave, please at least consider just taking a break and come back soon.

You and Alan, particularly, have made me scream with laughter and put so much humour into these dreaded diseases.

And, mentioning these two naughty boys does not mean I don't find lots of others on KA interesting, funny, touching, caring, and on and on..

Wow, what a roller coaster.
I am the 'undiagnosed', and not at all offended, by the way.
I read your initial post Kevin, and here's what I got;
Not a great idea to surf around the net for a self diagnosis 'cause, on top of all the frustration you get from learning nothing from the doctors, and being in constant pain from 'whatever mystery disease you might have', you'll convince yourself you have every rotten fatal, chronic, painful, dreadful disease ever known to man, while the real doctors take years to figure it out.
I didn't really think you were suggesting I should give up trying to figure out what's going on with me, or trying to help the doctors along. I thought perhaps you were just hoping to spare me some 'extra' grief along the way from your experience. And, that being said, I'm a big girl, and every time I read something on this board, I know that it is someone's opinion, and I always have free will to accept it, or move on.
Also, as 'the undiagnosed', until the 'firestorm' that stirred up here, I never considered that I might be a lesser member of this forum because of my 'lack of a diagnosis'. I never thought of the RA group as lesser than the AS'ers; never considered whether I should respect James more than Kat or Kevin more than Michelle because of the 'level' of their disease.I figure we all share the commonality of suffering from pain, and that makes us a 'team'. No post or poster has never made me feel otherwise. (though, I suppose I am a relative newbie, and perhaps don't have the same experience as others)But again, I do choose to exercise my free will when I read threads/posts, (as an adult with the ability to make choices), so I am not easily offended by others' opinions. I generally choose to learn from them.
When I read these threads that get derailed into negativity, it makes me reluctant to ever make a post that offers any advice or anything bordering on advice.
I usually opt for words of encouragement or an anecdote so as not to contradict or offend. And while I perhaps don't actually have any brilliant advice to offer, I wonder if others with more wisdom are reluctant to chime in as well?
In this case, someone I see as a staple to the forum, Kevin, is now feeling the need to step away completely.
That seems to me to suggest the forum is being the polar opposite of 'supportive', whatever the definition.
That is very, very sad.
So while it is okay to disagree, I'm not sure it okay to let things become so negative. But I'm also unsure how to stop it.
Except to remind folks, that whatever you think the definition of supportive is, we should keep it positive so not to chase away our friends.
Deep Breath?
Play Nice?

Hugging You Kevin!

Tracey
[i][/i]

Great post Tracey and I'm so glad that you recognize that everyone, regardless of 'level' is welcome, accepted and part of the family...I guess we really need to emphasize that and then hopefully soon we will return to the norm here, if you look back a couple of years to the posts, you can see how it once was here, very positive and everyone was one big happy family...I miss the good ole days...everybody should just hang in there and fight(diplomatically of course) for the KA that we need and love...

I've been a member of another forum for over 10 years and I think this kind of disequilibrium happens as the board grows and evolves. The members become good friends. As with any real-life family, we roll with the punches and love each other anyway, even when someone is being a pain in the [*bleep*]. Let's all take a deep cleansing breath and remember why we're here. I think there are some good thoughts in this thread, like being undiagnosed has its own unique stresses, pain is pain is pain, and we can all understand each other better than the rest of the world.

This has become my second favorite board and still is, in spite of this stressful thread.

Hi aussiegirl...well it is certainly each person's prerogative to do or not do as much as they want regardless of a "rating" of mild, moderate, severe, advanced..etc., I think that basically one's personality will play a role in how a person responds to a diagnosis or "rating" of one's disease, if prior to diagnosis, one was not very active, I don't think that will change post diagnosis...but then is the level of inactivity blamed on the disease? I have two sisters with MS...one was always inactive and the other was hyper-active...nothing changed with either of them in this regard post-diagnosis...and the hyper-active sister has a much more advanced and severe case of MS...I have an advanced/severe case of AS, with very advanced fusion and organ involvement and I'm just as hyper as ever...so there you go...the biologics do provide me with some reduction of the inflammation levels but not enough to bring down the need for heart meds...but you bring about a good point, that doesn't neccessarily mean that I'm worse off than person C or person D, a good friend of mine is a doctor and she treats auto-immune patients exclusively and she and her Mother both have RA...well she once put pain rating into a good analogy for me...she said, "one person's cup may hold 5 gallons and another person's cup may only hold a teaspoon but when a person's cup is full, it's full" and she said that with much compassion, especially towards her patients with "small cups" because they have greater difficulty in coping with their illness, perhaps the "big cup" community should take better care of the "small cup" community, if they'll let us anyway....


Edited by Michelle70605 (06/14/10 09:40 AM)

I wanted to add that my cup is definitely full, my pain is so incredible today that my blood pressure is up...I'm going to try and knock myself out with my meds because this pain is just too overwhelming...

Good morning Kevin!

I think I need to apologize specifically and directly to you, and I hope you will accept it

When you started this thread, my impression was that it wasn't really a brand new topic, but more a new comment on some of the other issues that have been swirling around on KA for a while now. And so when I came in and added to it, I brought in some of that baggage in in an effort to try and clear the air.

I must have done a did a poor job of it, as now I have clearly offended you!

When I first read that you felt my "wide berth" comment was "the most ridiculous thing you ever heard" I thought (hoped) you were kidding, and I said to myself:

"Self, surely Kevin is joking, I have made many, many far more ridiculous comments than that, just in the last few days!"

But now I see that you weren't kidding, and I hope I can explain, and you can tell me if this helps:



When I used "wide berth" I was thinking of boats in a channel, the way they sometimes need to be given extra room to travel through a difficult, narrow river bend, and the other boats may need to move over a bit to let them pass, and go wherever they need to go. I did not intend to say "stay away from them!" or "we are not allowed to make comments about the silly flags on their masts, or the funny-looking paint combinations on the sides of their vessels!"

Allright, shouldn't extend my already poor analogy any further, I am in deep enough water already!

So does that help, will you accept my apology, so that we can go back to our usual business?

Hey, I just had a great idea, you and I could dress up a boat to look like It belongs to a female rugby team, put lots of pink flowers and doilies all over it, surely that would easily fool Mig, and finally allow us both passage into the wimmen's forum!

Whattyathink?

Lol, a delight you are Dow, and so funny too (Mig would not be fooled!!) Kev, Dow, a big kiss please or I will kock your heads together,,,,,,,,,,errr how tall are you both please.........errr..

Hi Michelle,
These personal ratings only have a certain meaning to the individuals they belong to. The meaning could be based on anything, I suppose. If I had to choose one thing to base my own rating on, I think I would base it on my inability to do the physical things I want to do. Not everyone would have the same answer, of course, so even the same rating is going to be different from person to person. Maybe personal ratings are getting overrated? Is it possible to have a poll somewhere asking if people think other people having personal ratings is offensive? If it is offensive to people than I have absolutely no problem not mentioning how I rate myself publicly. Note that 90 percent of the time, I mention it to people with similar ratings who I think would not feel as alone if I told them.

I am another person who was very active prior to illness and was still hit hard regardless of how over-active I was. I really like the cup thing. I think that's called an analogy??? That could be right up there with the spoon theory!

Oh and Michelle... Hang in there. I enjoy having you as a part of family.
Take care,
James.

Oh thank you so much James, I really enjoy being a part of this family too...and I have no intention of leaving here...the fact is that my KA family is a very important part of my life and I don't know where I'd be without yall...you've been with me through the toughest of times and darkest hours...and that has given me the strength to push forward...big hugs & much love, my very dear friend...

P.S. I agree with what you've said, when we disclose the severity of our condition, it is not meant to offend anyone, as you say, it's intended to let them know that we understand and they are not alone...and also this is the only place that many of us are free to be totally open about what we are going through and I would be heartbroken if I lost that...I'm concerned about this most recent "political correctness" dispute, by allowing it, our freedom of expression is compromised, I feel restricted in what I say and if it continues, we may very well lose the sanctity of this place...that would be a truly awful thing...

Hi Kevin,
I'm just popping in to let you know I sent you and PM because I wouldn't want to see you leave either.
Take care,
James

Thank you for that Dow I accept your apology.However it doesn't change my mind. Thank you at least we part on good terms.

Kevin

Hi Michelle, Sorry to hear you are not doing so well today.
I love you analogy. It is so true. I am not sure if have a cup or a teaspoon right now. I know I used to have a cup, it was amazing the things I could do. I once played an entire State titles of netball with a stress fracture in my wrist. These days I am not sure if I only have a teaspoon or that the cup is already half full before I start.

Kevin please stay. I think you are great, always have.
Your post in itself did not upset me and there was nothing you said that was offensive in the slightest.
Never ever in your posts have you said that I am less of a person because I can't do the housework or whatever.Or even insinuated (sp) that you thought that.
I was simply saying that "I" feel less of a person when I read how bad others are and what they still achieve. This is totaly a self perception. Perhaps I should stop being so hard on myself.

As far as the rating of mild/moderate/severe. I am truely interested in what classifies us into any of these categories if only from a medical perspective.
As long as we here don't use a persons rating to judge them.
So far I have not seen this happen so thats good.

Keven I truely hope I have not offended you greatly. You are a wonderful asset to the KA community.


Tish
xxxx

Tish, I would think a doctor can evaluate the stage of one's disease by the level of progression in respect to fusion and organ involvement as well as the neccessity for aggressive treatment such as immunosuppressants, biologic drugs and medications needed to treat and prevent further organ damage and slow down the fusion...I know for me, my pain levels are high enough at times to cause high blood pressure which in turn can cause kidney damage and increase the risk of heart attack and stroke...my rheumatologist does a great job of informing me of the progression of my AS...she also does a complete work up annually of head to toe x-rays, MRIs, etc., a blood profile and does a comparison to the films from the year before, then she charts the progression...I'm with you, I really would hate to see Kevin go but he seems adament about it...xxooxx

Kevin - NO - to coin a phrase: 'You Cannot be Serious!'

Your post was well reasoned, and seeing the number of responses - though not read em all... - you will realise how very much you are admired and credited with good sense.

As for self DX, well, given the state of medecine today and the paucity of good doctors, it is very diff not to self diagnose! Though, there are many who comb the internet for 'symptoms' and then apply their own vague 'symptoms' to a curious disease/illness...like there are some others who just 'love' to 'go to the doctor'! (Before a furore breaks out, NO reference to KA'ers on either count.)

Used wisely the iternet is an excellent tool for information - information on an existing DX. Also, an excellent tool for referencing pharmaceutical medications and alternative medications. Am all for using the internet for good research, but as for DX for DX sake - hmmmmmm. Could be considered dangerous in some circs. But that is dependent on the person, personality, level of information, ability 'to' undertake good research and ability to question! Then, armed with relevant information, to consult with their medical adviser. Levels within levels. Which, I think is what you were referring to?

Please stay with us. I value your insightful (if there is such a word, if not, then there is now!) input and always look for your posts - even the luny ones, cause they make me larf. What would this poor ole gnomette do without her buggle-bear around to tease?

Take care dear friend - (((HUGS))) to you and to Joanne - scritches to Scoobes -

Molls, la Gnomette

Well, I've been taking notes as I've read the responses to the original post in this thread, which is surprising even to me because I've never done that before in all my time here at KA. However, I chose to do so this time because much of what I am reading is leaving me feeling very disappointed and upset about what is going on here at KA in general. I don't remember another time here when so many people were at odds with each other, and over so many different issues. I know that part of this is due to one simple factor--growth. KA has grown in leaps and bounds the last couple years (in total number of members), and I think we can use simple math to analyze what has been happening in recent weeks:

More members x potentially controversial topics = far more divisive results than in the past because there are so many more voices in the mix.

In other words, it stands to reason that as we grow, there will be more spats, more divisions, more cliques (that one really bothers me and I hope everyone here will work to combat that at all times, as cliques are ALWAYS destructive to online communities), more misunderstandings, and bottom line, more opinions. Because of that, I am not surprised that we are going through some growing pains--it's happened to every online community I've ever been a part of, with the original ones dating back to the earliest days of the first Mozilla browser (ie, I'm an old fart who has spent far too much time online since the Web became such a public entity). Some of those communities quickly digressed into nothing but outright arguing and rude, obscene behavior that led to the site's death in a matter of weeks. Others survived, but often in a very different form than what the original members had created; sometimes this was good, sometimes bad. As the net evolved and stronger, monitored communities sprang into existence, things seemed to level off and the constant upheaval slowed down drastically. As people came to understand that a discussion site had to be closely monitored by a team of experienced members who cared about the site's existence if it hoped to survive the spam and the trolls, sites like KA came to become the norm instead of the exception.

OK, great little history lesson there, Brad, but what does that have to do with our current situation, you ask? I just wanted to offer up some examples of how online communities have changed and evolved because I think we might be witnessing another step in their evolution right now at KA. Here we've got a closely monitored site where no nonsense slips in from the outside world (for the most part). The admins and mods oversee the day-to-day operations and make sure that members are not bothered by trolls and other outsiders. However, as a moderated community like this grows, the argument can be made that eventually, some folks will be looking for even more protection--not from outsiders, but from insiders, aka, other members.

Now, before anyone takes that to mean that I think some members are nothing but destructive forces, or that other members constantly call upon the admins or mods to "protect" them from other members, that is NOT what I am saying at all.

I'm going with more of a metaphor here when I say we might need more "protection" from those on the inside. As our membership tops 5,000 and looks to still be going strong, simple math tells us that we are going to be absorbing a wider range of beliefs and opinions, not to mention a wider range of what people feel is an appropriate way to deliver those beliefs and opinions. When KA was small, it was fairly easy to say you recognized every nickname here, and you'd come to recognize most folks posting styles. That is no longer possible. The end result of those two processes is that it disagreements become more common, and what might have been small disputes in the past are more likely to become BIG disputes because there are more people chiming in with their two cents worth every time a dispute happens. Sometimes that two cents is actually worth its weight in gold, sometimes its more accurate to say its only worth its weight in paper--paper that is can be used as a fuse to lend a spark to the tinderbox that was waiting to explode.

And just because I am pointing out what I think has led to some of these most recent problems, it's important to remember a couple things: !) This is just my opinion, and there is a very good chance it's wrong. I do NOT know any more--or any less, either--than anyone else here at KA. Well, sometimes I DO know more, but that's only when it comes to items that, per our rules, admins are supposed to handle. 2) Growth is only part of the explanation for the seemingly increased amount of bickering and hurt feelings that has been happening here lately. What else is contributing? Who knows. Maybe it's the fact that it's turning to summer in the northern hemisphere, so people are starting to go a little crazy with the heat. Or maybe it's because it's turning to winter in the southern hemisphere, so people are starting to go a little crazy due to the oncoming winter. Maybe it's the phase of the moon. Maybe it's the World Cup, or, more likely, those ^%%&*^&% vuvuzellas that make every broadcast sound like a horrible swarm of bees. Or, maybe it's the fact that, in addition to there being all these new opinions and new members here, many of the veterans have now been on KA for time periods approaching a decade and, as many of us see every day, familiarity breeds contempt. Or to put it another way, maybe, just maybe, over time some folks have realized they just don't necessarily like a some of the other folks here, and for whatever reason, that type of animosity is coming out of the woodwork right now too.

Bottom line, I don't like what I see happening here at KA. Believe it or not, and those of you who've read even one of my posts have no problem believing it, this post is really just a preamble to my REAL comments on the situation. As usual, I didn't intend for this one to be this long, but c'est l'avie, it is what it is. When I've finished my notes and collected my thoughts, I'm going to be a lot clearer about why I'm disappointed in what I've seen here recently, and also offer up my opinions on some of these hot button topics that seem to be coming up again and again and causing so much rancor. And yes, as i said earlier, those will be nothing more than my opinions, so anyone reading now can decide then if you want to waste any more of your life taking in MY opinions. Until then, I need to go entertain my dad, who just showed up. He's taking me to my eye doctor follow up appointment tomorrow, as, unfortunately, I still can't drive thanks to my iritis. So, I'm off to deal with family obligations, might be back tonight, might not.

Until then, could everybody try to simmer down now. Betrwe yet, I'll let 1960s pop act The Youngbloods provide everyone's marching orders until I come back (and yes, I am saying this very tongue in cheek, but this IS a very nice message):

Come on people now,
Smile on your brother.
Everybody get together
Try to love one another right now.

Brad

Kevin, I will admit upfront that I did not read every response in this thread, but I did read yours and Dow's and some others. I am puzzled, you threw up a whole page of your opinions, and stated somewhere that the subject was up for debate, yet you get offended when someone else states their opinion. It looks to me like you had already made up your mind to leave and just decided to do it with a little drama. I decided early on when I started posting on the web, that you need to have a thick skin, and take what you can enjoy, and what benefits you and let the rest slide. For the most part I have always enjoyed your posts, as I do others that I read. In the end it is still your decision whether you go or stay, and the fault of no one else. Good Luck, whatever you decide.
J.R.

Brad, I love the little saying. You had a good post. I will have to admit that "one" of the reasons I haven't been here much lately is the "spats". I just really don't like to be around when I see people I love so dearly taking pot shots and then I think that they aren't, it just comes out wrong. Whatever it is, I am really struggling right now with my pain, 2 fractured feet, a fractured wrist, a chipped elbow, 8 fingers and 2 thumbs that have no feeling in them, joints all over the body that have so much feeling that I can hardly stand the pain, an eye spasmed shut, a voice that won't work, feet that will hardly hold me up that have new orthotics trying to help my pain. I just feel so bad and then when I come here and read spats that I just should ignore, I get stressed which makes Lupus much worse so I just feel I need to stay away until my disease calms down and/or the forum calms down.

I love you all dearly. I would have had a very hard time these past few years without you to hold me up, cry with me and laugh with me. I will be back. I am not gone for good. I thank you all and ask that if it is "not" important, please just swallow it and forget it.

Hugs and Blessings.
Possi

Hi Joyce, it's great to see you! I'm so sorry that you're having such a rough time... You bring up such an important point about stress being so unhealthy for us...I really hope things get better for you soon, big hugs & much love, we miss you!!...

Wow, Possi! When did the fractures in your feet occur? And the chipped elbow? I think I knew about the wrist. I think you need to be wrapped in a protective cocoon right now.

I'm so sorry about the stress. I think I understand.

Possi,

Just wanted to pop in and say "hello". I wish you could be here more often but I understand why, Just hecause you haven't been here lately, doesn't mean we haven't been thinking about you. I am really hoping you get some relief soon. PLEASE take care of yourself. hope to see you back here when you are feeling better.

Hello Kevin...
I had to sleep on it having read the sad and shocking news that you want to leave...

When I initially read your post, I responded to what I could identify with and share, in what I hoped was a lighthearted way.

Later, when Dow posted I identified with some of what he said too and responded to that.

When Wendy picked up on something I said about support, I replied to her comments too. When the conversation turned to what constitutes support, I looked up the word (for myself) as I found this a very thought provoking question. I posted the dictionary definition as part of that chat.

I didn't find anything that either you wrote, Kevin, or Dow wrote to be in any way offensive to me and genuinely thought I was entering into a friendly discussion...

This is not the first time I have entered into a chat in this way and then found it ending up in a huge, controversial type of explosion.

I can only think that by responding to Dow and relating my thoughts to his, that I too must have seriously offended you. I feel that Dow was just giving his take on things.

I am horrified and devastated to think that I am part of the reason you have decided to leave.

I am losing any confidence to comment on anything at the moment for fear of getting embroiled in an argument.

I hope I did not inadvertantly offend you also Michelle, and maybe even others...

I don't know the history and politics on this site, my intentions are honerable and I sincerely appologise if this does not come across as being the case.

I am a new member... there is lots of talk from long standing members not wanting to be here any more and I think, perhaps that might be adding to that feeling... I feel so sad and overwhelmed by that, as I really just want to join in chatting, helping and caring about others...

Much love to everyone...

No JR that was not my intention at all and if you think that you do not know me at all.I deeply regret that post and wish I had not put it on.I didn't expect that response.
well I was wrong polite constructive criticism I willingly accept that's why it was put up.I'm not always right I accept that who is.
Best wishes to you.

Kevin

This may be a mistake, bringing this back to the front, but I totally missed this entire thread. I'm soooooo BS about Kevin leaving that I just wanted to have my say. His post was an example of the kind of posting that brought me here in the first place, and then held me here as time went on. There are so many well spoken posts here it is difficult to qualify them, but Kevin's is in the very top. Of course we shouldn't self diagnose, that can be too dangerous. It is something that goes without saying. Nevertheless, the way Kevin said it was exemplary. And now, we no longer have Kevin to "KickAS" around any more. We are all the worse for that, and we need to learn from it. Kevin was as good of a friend as I have had in this battle against AS, and I will miss hearing from him greatly. And, I shall be very careful on my future posts to make sure no one is offended (Of course that doesn't apply to Alan, but what does?) because I couldn't bear to be the cause of someone leaving KickAS.

I couldn't agree with you more on this issue Dean, not only do I miss the good old days of open-hearted posting but I miss Kevin, Wendy, Trudi, Sarah and others... I too have been thinking about leaving, as it's just not the same...

oy, now listen here, what's afoot. cripes and bloaters, I am almost offended.

Kevin I am sure will be back, I intend to sort him out and say:

"Oy Kev, the gang miss you- you better get back posting or they are sending the chick (Lisa) to sort you out,and you know how painful that can be!!"

KA is a lovely place; more, it is the best place for Spondylitics, we all know each others sufferings, so no leaving any of you, I forbid it. Your honest views and experiences are the data, the backbone, the essence of KA, don't deny us all the privilege of sharing and benefitting from your knowledge and experiences.

Posting is type, type is easily misunderstood, intended nuance is often lost. In the scheme of things, the odd fall out here is b u g g e r all. Please, no more talk of leaving. If for no other reason than to please and abuse me, I would miss you all so very much.


Alan (Deans best friend)

Thank you, Alan, for permission to abuse you. I shall now study Lisa's methods more closely.

Don't worry folks, I will never leave, no matter how much you want me to.

Ahaaa well is only one Lisa and wow, vicious and cruel, even more cruel to those that might try to usurp her position of "I'm the boss" in the KA world.......lol

Yes abuse away, please do. KA needs all of you, and i guess, even Lisa.........ahaaaaaaa

Yeah, I sure miss Kevin too, and have made it my personal mission to provide so many comic opportunities that he will just find it impossible to resist temptation any longer!

But it's true, the conflict that came out here started before this thread, so it may have made little or no sense to those who read just this one by itself.

Mostly I wish that Kevin hadn't pointed his anger directly at me, but if he chose to do so, that's okay too, I'm sure we could have worked it out! (never too late, Kev! )

BLAH, HA, HA..lol YOU are my kind of girl..YOU GO GIRL!

BLAH, HA, HA..lol aren't you glad there is just 1 of me..lol

Viscious and cruel????...ME! thats not what your girlfriend says...lol

Oh and I SO know that I am the boss of KA World *shh just between us, Mig didn't hear that..lol*

Hi Dean,

I don't think there was any harm in bringing this back to the forefront, so I wouldn't sweat that. Because you did miss the original discussion, that's a completely valid reason to make a post now, especially because this was an important issue and it did lead to a drastic consequence (Kevin leaving). So please, don't worry at all that you felt compelled to respond to this and thus brought it back to the top of the forum again.

I would like to respond to one thing you said. You mention that you "shall be very careful on my future posts to make sure no one is offended." While that is absolutely a worthy goal, and one we should all strive for, I'm afraid it also forces me to deliver some bad news: No matter what you post, be it the most benign, helpful, nice, courteous, cheery, or even downright nauseatingly saccharine entry of ALL-TIME, there's a chance something in that post might offend someone. If the last few months here at KA have taught me anything, it's that it is absolutely 100 percent IMPOSSIBLE to know what post might cause offense in one or more members and, as a result, end up triggering anything from a two-post polite disagreement to an all-out 300-post multi-faction war that results in little more than a scorched earth result. I used to think I could accurately identify any and all problem posts before they really became problems, but I have been disabused of that notion many times over now. Certainly, there are posts that are so odious that they immediately cry out to all who read them, "This is an obnoxious, offensive post certain to really p*** off a whole bunch of people," and when those suckers do rear their ugly heads, we admins try to take action as fast as we can in order to minimize any damage said post might cause. Sometimes we're successful at that, sometimes we're too late, or sometimes the original post's perpetrator makes sure that the issue does not die with just one post and keeps the nastiness flowing until s/he tires of the battle or, worst-case scenario, someone gets banned (I cover this idea of intentionally negative posts in a slightly different way a bit further down, FYI).


Before anyone wonders, this would be a good place to let anyone reading this know that I do NOT think that any post in this thread is an example of what I just spoke of, i.e., the intentionally nasty post. Everything that went wrong in this thread was purely unintentional and a result of, in my opinion, nothing more than different worldviews; this thread is a good example of how every one of us here at KA is offended by different things, at different times (i.e., something that offends us when we're feeling really crappy and just plain mad at the world might sail by our scanners undetected on a good day), for different reasons, and in varying degrees. Because that is true, we had an unfortunate situation arise in this thread where a well-liked, long-time member like Kevin felt that remaining here at KA would ultimately cause him more stress than he felt ready to handle at this time. That, of course, really bums me out, and I know it bums out a lot of other people too. In the past, I would always try to talk someone out of leaving when a situation like this arose, but these days, I no longer do that. Why? Because I came to realize that if someone really has become so upset by things s/he reads here that coming here has begun to cause a level of distress that is no longer offset by the good and helpful posts that dominate every forum, then it probably is time for that person to take a break.

Whenever someone does decide to leave, there is usually a "last straw" event that triggers the departure, as appears to have been the case this time. While I lament the loss of any member, especially a truly valuable member like Kevin, who contributed to the KA community in many ways on a near-daily basis, I actually take heart if only one person leaves because to me, that indicates that, in reality, the "method" of dealing with conflicts and angry confrontations that has come to dominate the KA forums has worked once again. Don't read the wrong thing into that: I know it sounds as if I'm saying, "Oh goodie, only one person left, no harm done," that is not the case at all. I recognize that the offending event was absolutely real to the person involved, and that it bothered them enough to decide "enough was enough." That unquestionably sucks, and I hate it when ANY member decides that KA no longer meets his/her needs and thus they must exit the premises. However, anyone who has ever belonged to any other internet forum or discussion group knows that in truly dysfunctional groups, people leave every day, and not only that, they leave in groups, not just one by one. The end result is always the same--eventually that forum/group becomes essentially inactive and dies a slow death. I think we can all agree that nothing of the kind is even close to happening here at KA. Yes, occasionally people do leave, sometimes in a very public manner. However, as anyone can see from our constantly growing numbers, for every person that leaves, we are bringing in quite a few new people these days. That doesn't mean the contributions of the person who left can ever be replaced, but it does mean that KA is still a healthy, thriving forum/support group that continues to draw new people who generally like the atmosphere we provide. In addition, history tells us that many of the folks who leave end up coming back to the fold eventually; they decide that they are willing to give KA another chance, and some admit they ended up missing the support they received here more than they thought they would. (And Kevin, if you're reading this, as I hope you are, I do hope that one day you reach that point and decide to come back to us. Too many people here love you and really miss you, and you provided a positive influence to every forum you chose to post in.)

Let me take a stab at providing a better explanation of what the main point I'm trying to make here, still using this thread as an example (simply because it is current and on-topic, not because I think that anything Kevin did was out of line, or in any way "wrong" for him to do). Earlier, I alluded to the fact that KA has developed a "method" of dealing with in-forum member disagreements. What I meant by that is that, in addition to the formal process in which admins (or moderators) intervene in a conflict, a process of self-correction has evolved here at KA that allows the membership to police itself and resolve potential conflicts before admin intervention is required. I feel very strongly that this process of self-correction is one of the most important, sustaining features at a forum like KA, and I feel that our membership has done a wonderful job of embracing that process.

For example, early in this very thread, a couple posts were made that triggered a highly negative reaction from a few members. At the same time, a few other members decided to post to say that they did not quite see what the ruckus was about because they did not think any offense was intended by the original "negative" post. For a brief time, it looked as if the thread might spin out of control and that the intervention of the admin team might be required. Rest assured, the post WAS being monitored from the first moment a potential conflict appeared.

Almost as quickly as the argument arose, however, the flare seemed to die down. Other members jumped in and tried to mediate the disagreement, talking to those on both sides of the fence to try to create a middle ground while also attempting to minimize any hurt feelings that might have occurred. I was very pleased to see this type of reaction occur so quickly after the initial problem, because, in all honesty, if a forum is to remain healthy, it is this kind of user interaction that MUST happen when disputes arise. Yes, the admin team could have jumped in immediately and issued warnings all around and, in all likelihood, brought any real discussion in this thread to a screeching halt. That would have been good, right? wrong, at least in my opinion it is wrong. If that had happened, and if the discussion would have just come to a halt, the end result would have been this: Instead of the issue being talked through until the thread had completely moved past the disagreement and moved on to, potentially, many other conversation points, all of them benign, some of them likely humorous, the discussion would have died very abruptly. As a result, no resolution to the original disagreement would have been attempted, and it is very likely that whatever wounds had been opened by that disagreement would have remained open and perhaps even started to fester. Members who were upset by the original negative post would have remained upset, and, absent any discussion in the thread, they would have no idea WHY the person made that original post, or WHAT they meant by that post. Instead, they would likely follow human nature and think the worst about that post and the person who left it--this might include thinking that the person made the post intentionally in an attempt to hurt someone's feelings or drive them to anger.

To me, that is one of the worst kind of lingering thoughts we can have around here because, truly folks, how many times has someone made a post here at KA that was INTENTIONALLY designed to hurt someone, or INTENTIONALLY designed to anger one or more people? I'll shout my answer to that one: NOT VERY OFTEN. C'mon, you guys know that's true; in all my years here, I can count on one hand the number of times I witnessed someone here being mean for mean's sake, or someone who absolutely disliked another member SO much, that s/he could not resist making that dislike public in the most offensive way possible.

And here's the thing: On the few occasions when such an attack or nasty post did appear, THEN the admin team stepped in immediately. That's because it is immediately clear to us and every member who can read that the post/thread in question serves ZERO useful purpose here at KA, that it contains NO lessons for any of us to learn, and, in the end, it could create nothing but negative energy and cause real distress within our membership. In most, if not all, instances that I can remember where something truly nasty did happen, a new member would be involved, one who had almost certainly joined KA solely to cause problems, either as part of an existing agenda or because something s/he read on his/her first visit somehow triggered an irrationally angry or hurtful response. There have been a couple situations involving longer-term members, but those truly are the furthest and fewest between of ANY of the negative situations that we deal with on a regular basis.

So, to get back to the type of posts that occurred in this thread and many like it, because it was obvious that nobody was guilty of intentionally trying to hurt anyone else here, and because the thread dealt openly with the conflict and quickly started to move on (either to issues related to the original post or to address comments made in posts that helped ameliorate the conflict), I would argue that the interaction that happened here was, ultimately, beneficial to the overall health of KA. I say this because once again we saw how the wonderful members here are able to self-manage and overcome conflicts that arise here, usually inadvertently, and in a positive manner. Positive in that, after the negative comments and resulting conflict, a good, open discussion occurs. In that discussion, we almost always see the direct participants in the conflict "speak" to one another via additional posts; the vast majority of the time, these direct conversations resolve the original problem and lead to a better understanding of why someone might have made what was perceived as a "negative" comment in the first place. In addition, other members are also able to join the discussion and thus provide many other positive additions to the discussion; these can include posts that act as a calming influence, those that are intelligent additions to the discussion that cover points that perhaps the original participants had not thought of, or perhaps those that use humor to defuse the original conflict and sooth any hurt feelings that might have resulted from that conflict. It is that last type of post that often results in some of the most original, intelligent, and incredibly creative content that we ever see here at KA. After all, laughter really is the best medicine.

On that note, I believe I'll take my leave. Dean, thanks for inadvertently providing what turned into a jumping off point for something I've been thinking about for quite a while but was unable to put into words. My thoughts on this topic just weren't coalescing in any kind of coherent manner, despite a couple attempts to write on this exact topic, attempts that quickly fell by the wayside. Once I read your stated goal of "never offending anyone," something clicked and this post is the result. Hope it makes sense to those of you who don't happen to be the little men living in my brain.

Brad

I'm not sure after reading this entire thread what clues me in to it in the first place, but reading it moved mr to the point that I'm actually responding on my I-phone, which is a truly onerous way to post.

Kevin, I sincerely hope you'll come back. I got back from holiday and thought that perhaps you'd gone away for a few days yourself...until today. What started as a very well thought out and presented discussion point became toxic somehow. While Brad is correct in his assessment, fact is anything that makes one of our fammily feel unwelcome or that he or she needs to leave is, to my mind, toxic.

It's hard to gauge intent in a post, for all the reasons we all know. Add to the mix the pain we all live with, the fear for the future, the meds many of us are on, the life changes and perception alterations we are forced to make, not to mention the disparite personalities and outlooks, other things going on in our lives (this list could go on ad nauseum frankly) and I'm surprised we don't have a blow-out every single day.

But we don't. And that is a bloody miracle!

The increase in contentious posts may be for the reasons Brad stated and probably are to a great degree, but more than a few of us are going through crap in our personal lives as well, much of which is not shared here. At the risk of offending some, I would urge all of us to take a step back before responding to posts we find offensive. Make sure our reactions are actually due to what has been said and not due to increased personal stress levels, or coloured by our anger or pain by those real world circumstances. It's no more fair to take our personal stressors out on our KA Family than it is to take our pain out on our immediate families, friends and spouses.

I care about all of you, downright love some of you. I'm not sure what's going on around here, but it's hurting people I care about and love. Personally, I just wish it would stop. But that's not realistic in a group as large, long-standing and diverse as ours. So, I'll take my own advice, take a step back for a mo, remember to breathe.

And the next time I feel tempted to post from my I-phone...promptly bang my head on a brick wall. Surely that will be easier to take than typing so much in this hunt and peck fashion.

Love,

Yes..it is only after thinking about it I have realized I haven't been seeing certain people on here for awhile. I do agree with you that alot of us have alot going on in our personal lives that people here dont know about, me being one of them.

I agree with what you say 100%

I really miss Kevin. He added so much to this forum. Sometimes people(all of us) have to slow down before we send off an answer to something someone said. With the written word is so easy to misinterpret the meaning of a post. We miss so much without being able to hear the tone of someone's voice. A little difference in tone can make a big difference in meaning.
Donna

Kevin has been in touch, and has said he will return to the forum at some point.

Hopefully he will be so offended by me revealing here what he told me in a PM, that he will return faster to chew me out!

Sent from my iPhone

I'm hoping he will...otherwise i have no one to tell me that my bum is as big as an airplane hanger..lol (ok not really missing that so much..lol) but TONS of other things..lol

Thanks, Lisa. It's so hard to remember in the moment that not only do you (not you personally, Lisa, 'you' as in the person responding to the post) have real life issues, but quite possibly the person you are responding to does as well.

One of the wonders of KA is that somehow we weather these things.

Warm hugs,

Hi Donna, exactly.

Warm hugs,

Dow, thanks for that. It's good to know that Kevin is merely taking a sabatical.

Warm hugs,