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

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...