Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Short and sweet

Through all that's been going on here in KA the past two weeks, I'm sure a couple of you noticed I've been oddly quiet. Well, fact is, I'm not doing too well right now, as I am being jerked around by a truly ignorant rheumatologist and, as a result, I am now 4-6 weeks overdue on my remicade. That has led to me being nearly bedridden and needing to have my mom and dad take turns staying with me 24/7 because I can't really take care of myself or my pets. One of the many things I SO love about AS, having to swallow my pride over and over to ask my folks to take care of me as if I was 5 again.

Anyhow, because I feel like such crap (typing this from bed on my laptop), I haven't posted much, and even this post will be short.

While the pain from no remicade has been the worst of my pain in the weeks preceeding, watching some of what has unfolded here in KA has absolutely added to my mental anguish. I have watched some people I've known for years, and some I've known for only weeks, apparently lose sight of why KA exists and why we need this community so very much. Friends attacking friends, wild accusations full of incredible misinformation, horrible assumptions made about our chief admin, mig . . . it's all made me sick.

Folks, I just want to say this: In all that's happened here at KA through the years (newbies, I know that doesn't much apply), how could any of you doubt for even a moment that there is ALWAYS one overriding principal that guides everyone who visits this site--wiping AS off the face of the earth. And, more importantly, perhaps, since that goal seems so far away, during the time before that miracle happens, we're also all here so we don't feel so alone when this disease delivers its hardest punches, when it makes us feel as if our bodies had turned against us, and worse, when it makes us want to no longer go on living in these bodies.

And, if you can never doubt those things, then how could you doubt that, ultimately, the folks who help guide this site, be they admins, moderators, or simply long-time members who know so, so much, simply want the best for this site? ALWAYS. My friends, if you can just hold onto those few simple principles, that we're here to fight the disease, and so we won't fight alone, and because we want this site to always be the best it can be--then can't you let the other stuff roll off your back? Whether you follow the NSD or take anti-TNF drugs, whether you believe the medical community is only in it for the money or know that a doctor has worked miracles for you, whether you are liberal or conservative, rich or poor, in a flare or feeling fine--can't we stop bickering about this, honestly, unimportant piffle?

Honestly, it hurt to read people think that we would ever let this site become just one thing for one audience. It won't ever happen, I promise you. And just because one person--albeit a controversial one, eh John?--is currently listed as the "owner" of KA on some piece of paper at a web hosting service, it hurts to know that some of you think we would ever let one person exert sole control over KA, that we wouldn't act as a community and seek as many voices as we feel we need to hear before we take any important actions. And yes, maybe that's our fault, maybe we haven't been open enough, have tried to keep things behind the scenes too much. That we have seen, and that we will strive to improve now. But we could have improved that without all the hurtful accusations, without all the assumptions and negativity--just ask us.

Finally, everyone needs to know i write this on my own. Yes, I'm an admin, but I didn't consult with any of them before I wrote this, nor do I speak for any of them in this. Heck, if one thing has been clear this week, I don't ever need to do that, as the amazing, wonderful, ever-giving mig has shown time and time again that she can rise to the occasion and speak for herself, eloquently and passionately. Mig, I love you for what you have given to this site, and for the endless hours you continue to put into it, even in the face of such adversity. Timo, wendy, John, chelsea, tim, fyrfyter, and all of you've I've forgotten--I love you guys too, for always looking to take the high road, for always asking, "what do you guys think?" whenever any issue arises, and for giving so much of yourselves to this wonderful, amazing site.

And to all the members out there, I love you guys too, I've learned so much from this site, about not just AS, but about life, about being a good person, about battling through adversity when times are tough, nay, when times are beyond tough and crossing over into the unthinkable. Every one of you is a hero or a heroine, and what you all do every day to fight AS and to make your lives better--not to mention the lives of those around you--well, you honor me, you honor this site, with your courage and perseverance.

So please, please folks, can't we let this stuff die down? Nobody will be a part of any book unless they absolutely want to be. No decisions will be made at this site unilaterally, without the incredible wisdom of numerous voices. What WILL continue to happen at this site, now and forever, I hope, is that we will continue to join hands and voices to fight this hideous disease called ankylosing spondylitis. That I know, and that knowledge I will do my best every day to convey to everyone who ever walks through these electronic halls.

That's it. End of rope officially reached, y'all.

Brad

Thank you for that Brad I agree with you 100% and thank you for writing when you are in so much pain. Im sorry to hear you are suffering so much with this terrible disease again and wish you a very speedy recovery. You are always so positive in what you write and I know it comes from the heart you are a very big asset to this site with your comonsence and wisdom.

All the very best to you.


Kevin

Splendid words brad, on a personal note may i echo your comments about Mig. A real treasure to KA she surely is.


Now Brad words:: Short - Long!!

Well short is abour 3 lines Long is about 10

I thinktou wrote 2300 whiich is lightly longer than short very sweet though and such an effort in your current condition. Am so sorry that you are victim again to the agonies of our given lot

Best of health to you Brad

Brad you are making me cry - AGAIN!

The outpouring of this community wow. Oh my goodness, it makes it all worth every effort we've given.

Can't type more cos is too blurry.

Brad dear Brad would you PLEASE go and worry about resting up and looking after yourself. Still praying for you while you await your Remi. I love you too!

stop it you clot!

Brad - in a nushell *yes. Right on man. Thank you.

Now, will you please go rest...

Sorry Mig… Brad has opened the door… you may want to keep Kleenix handy.

I have had the privilege to work with Mig for many years now in my Moderator role and her in Admin role. Holly brought me on as Moderator 5-6 years ago... It has been a while, I was living in Phoenix at time but do not recall exact year.

I believe the single greatest asset we have at Kickas is Mig. She is the one of the most objective and diplomatic individuals I have ever known. Of all the members I have come to know here, there is no one better here to lead Kickas in my opinion. Her objectivity and diplomacy is reflected in her leadership here and she seems to balance the hot issues with objectivity despite her beliefs one way or other.

As for concerns regarding John and changing Kickas to his liking. This does not worry me as long as Mig is in her role. As she stated prior, she nearly stepped down previously for these same concerns some have expressed many years ago when Pete brought John back in. Obviously Kickas is still pretty much the same and Mig is still here overseeing that the Kickas boat keeps sailing.

In my opinion the first change you will see at Kickas if this change some fear is happening is that Mig will step down as her and John are in much more communication regarding Kickas than any of us. If she ever tells me she believes Kickas is changing and she does not like the change, then I will be concerned.

I do know she has not enjoyed the past couple of weeks although.

My 2 cents...

Tim

brad, feel better soon!

up with mig! yay mig!

Hey Brad,

Nicely - albeit legthily - put ; )

Are you familar with the 'mockumentary' film Spinal Tap? The band also produced an album and there's a song on it called Short and Sweet. Perhaps unsuprisingly it's about 12 minutes long!

Feel better soon old comrade-in-arms.

Cheers,

Oh no please dear Tim, I love you too but I beg everyone, not this door again... whaaaa ...kleenex alert. We have already had the mig thread (of the most generous sentiments I could ever have hoped to read, bless every one of you) that was never suppose to be about me, and I can't handle another. I have a fear of heights - I cannot handle a pedestal! And it's not about me.

This is only and all about KA. Looking after this site is a privilege and an honour that each of us takes seriously and we can only ever promise to do our best. If I look good, it is only for having been surrounded in caring and wisdom of great advice, both on the team and off.

Tim, I have tried to model your integrity and fairness so I'm tossing this right back at you. You have helped shape KA enormously with your kindness.

Timo, John, Brad, Wendy, Chris, Tim, Megan, Chelsea... it takes a team. I'm proud and so fortunate to learn from you all and KA is blessed to have your time and devotion.

end of love-in
mig