Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Diagnoses

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.