Quote:

Lets try another analogy. A conversation between a stranger and the poor me type AS person.

Stranger:"how you doing today?"

AS person: "oh I hurt so bad my AS is terrible".

Stranger:"I love the weather today, nice and overcast".

As person:" when the weather is like this it just makes my AS so much worse".

Stranger:"What do you think of Obama as our president?"

AS person:"Can I tell you a story. I had trouble breathing because a reaction to my pain meds. I went to the ER and they had the audacity to counsel me about it. They didnt listen to me when I told them I had bronchitis. They knew nothing about AS. I cant wait to write a letter of complaint".

Stranger:"You gonna watch the football game tonight?"

As person:"I cant sitting for that long hurts my sacro iliac joints."

Stranger:"Hey I gotta go"

As Person:" Dont you want to hear about my rib pain?".



OK, this will be my last response to you, I promise. Obviously you and I are never going to agree on most anything to do with AS. However, the main thing I'd like to say in this last post is that, more than anything, you need to stop making this giant assumptions that you understand the way most people here think--both about AS and life in general--and the way we act around other people in regard to our AS. In every post you've made, you have expounded on those assumptions at length, and in every post you've made, you could not have been more wrong about me, and, in my opinion, 99 percent of the people who regularly visit this forum.

See, in your goofy little dialog above, you seem to believe that most AS patients immediately begin talking about their AS at the drop of a hat, even if the conversation has nothing to do with it. Here's my reality: 99 percent of the hundreds of people who know me in real life (How could it be that many? Because I have a very active social life! Wow!) have NO idea what illness I have. Even though AS has left me very physically altered, enough so that it is very, very easy to see I have some kind of illness or was in some kind of accident, that vast majority of friends and acquaintances don't know what I have because I NEVER talk about it. Even people who have known me for years don't know what I have--they might know I have arthritis, but they have never heard any variation of AS uttered by me.

When I am out in public, unless I am with my closest friends in the world, the ones who know EVERYTHING about me (and likewise, I know everything about them), I never show that I am in pain, I never discuss my illness, I never ask for help unless I absolutely do need it (which does happen more and more often as I get older), and I am almost constantly laughing and smiling. Heck, I'm even smiling in my avatar photo, which totally goes against your "I can see the anger dripping off [the photos]" theory. See, I have a wicked sense of humor, albeit a bit offbeat, and I am constantly looking for new things, new experiences to make me laugh. If I'm talking about my AS, I'm probably not laughing, am I? Well, even that's not true--through the years, my AS has put me in some goofy situations that have led to some great punchlines and great party jokes that always get a good laugh. I guess I wasn't totally accurate when I said I never talk about my AS then--I totally forgot how I absolutely will talk about it if it led to a situation where I looked a bit foolish to the point that I know others would find the story about that situation to be entertaining. Even then, however, I pretty much always just say "arthritis" instead of AS, because I can't think of much that might kill a funny story before it could even get started than trying to spit out, "ankylosing spondylitis!"

And yep, I DID say that it was MY AS in that last paragraph. For crying out loud, why wouldn't I? It IS mine, after all, not yours, not God's, not anyone elses--my illness belongs to me, just as my positive health features belong to me. My very low cholesterol, my clean arteries, the nice full head of hair I still have at age 45--if those good things belong to me, why wouldn't I take ownership of the bad things too? I've never understood that line of reasoning. Just because I acknowledge my AS is mine, it sure as heck doesn't mean I don't want to get rid of it. I have an extra 20 pounds that's been with me for years too, which is another negative, and gee, I sure do want to get rid of that, too.)

And, I really don't think my "don't talk about it in public" is the exception among the members here; see, most conversations have nothing to do with health or medicine (kind of like your "sample" conversation up there), and therefore, why in the world would anyone EVER bring up their AS in a non-medical discussion? The only people who seem to always go completely off-topic when carrying on a conversation with other people are those people we know as "boors." As in, they constantly exhibit boorish, "it's all about me" behavior in which they constantly try to steer every conversation back to them and what's going on in their lives. A boor with AS might bring up their disease as a topic if they were stuck and couldn't think of any other way to bring the conversation back to themselves, but honestly, it's likely be a last resort, as even boors like to pick the spiciest things to talk about, the things they know will hold their audience the longest. Why? Well heck, that's easy! A boor thrives on being the center of attention, on forcing others to listen about his/her life. Thus, a boor wants to pick as exciting a topic s/he can so that other folks will find him/her fascinating and remain in place inside the boor's circle of conversation. Any good boor has learned through the years that most people eyes glaze over and their attention falters the minute another person brings up their illness, so even boors know to stay away from that kind of talk unless a last resort situation is at hand.

Does this description of a "boor" mean that I think you're a boor? No, not really. Although I do think you borrow one play from the Boor's Handbook, and that is the one where you really, really like to talk about yourself. At the same time you accuse the folks here of having this pitiful "poor me" attitude, you seem to be quite good at keeping the focus on yourself when you post and are quick to remind everyone how well your positive thinking regimen has lifted you out of the morass the rest of us are still stuck in. And that's even though if you were to take time to ask the members, I would bet that not a one of them would think they were stuck in the deep, dark hole that matches your vision of KA.

Coincidentally, I think that the way you view KA now plays a huge part in why you believe that there exists this stereotypical AS patient whose main joy in life is discussing his/her AS at every opportunity and who makes the disease the main focus of every part of his/her life is because that is what you see in this forum. Well, if that's the case, here's a newsflash for ya: This is an AS DISCUSSION FORUM!!!! The main topic of every post is SUPPOSED to be AS in one way or another. Heck, in the main forum, we even ask people to declare in the subject line if their post is off-topic and has nothing to do with AS! If you only look at the people here in that context, then yeah, 99.9 percent of the members here do spend all their time talking about the pain their AS causes, about the medications they've tried, about how having AS has limited their ability to achieve goals in life. That's what they are freaking supposed to do, finnari! One of the main reasons of a specialized forum like this is so that a member can come here after having a tough day on the outside and vent their frustrations with their AS. They need to do that because during every other hour of their day, they didn't mention their AS once! Not to a stranger, not to their boss, NOT ONCE! These good people went about their daily activities without mentioning AS. They did their grocery shopping, took care of their kids, went about their jobs, interviewed for new jobs, had sex, saw a movie, took out the garbage, he** ran for Congress, WHATEVER!!!!! They did all this and more, and for that 99.9 percent, AS was not mentioned in any way, shape, or form.

Did the people with AS THINK about their disease during the day? I'm sure the vast majority of them did, and many of them might have thought about it A LOT. A few might have even thought about it almost nonstop, even as they were doing other things, a small part of their brain might have been thinking about their AS because they were having a horrible pain day, meaning it was hard not to. Even for that small majority that thought about it nonstop, they still went about their daily routine AND THEY GOT THINGS DONE!!!!! And I will also bet you that every time one of these fantastic people had to interact with another person, be it a family member, or the general public as part of a job, that they had a smile on their faces and were able to exchange pleasantries with no problem whatsoever. I'll go even further and bet you that for those who do deal with the public most days, if you were to ask the folks they dealt with regularly, you would hear the same thing over and over: That Joe or Sally or Lars or Arpita always has a smile for everyone and is always so nice and pleasant that they just love dealing with them. I know you won't believe that, but all the AS kickers I've met in person have a smile on their faces pretty much 24/7, and they are pretty much the most positive, optimistic people I've ever met. See, they've already faced down a terrible disease and, while it might knock them down from time to time, they get back up every single time, happy in the knowledge that they beat back the monster once again and that, once again, they are back in the ring and fighting to enjoy their lives as much as is humanly possible.

So, finnari, you go ahead and keep that picture of the angry, dour AS kicker in your head. You go ahead and believe that what you see of each person here must be a tiny snapshot of how they act in their daily lives too. Go ahead and ignore the fact that the vast majority of members come here for a half-hour or hour each day, tops, and that while they are here, they know they can let their guard down and be as angry, sad, pissed off, sore, cranky, inflamed, and grumpy as they want to be because they are among friends who understand those emotions. Go ahead and fail to realize that the members keep coming here despite that constant outpouring of cranky, sore, etc. posts because they know they have left their fair share of those posts, and because they know they will receive so much love and support from every other member that it will help wash away the pain and grumpiness, thus allowing those who came here to return to their real lives minus the anger, the hurt, and yes, even the self-pity, that this terrible disease causes. Go ahead and ignore the huge number of positive posts that are made here each day, and by that I don't just mean the loving and supportive posts made in response to negative posts (the ones I just mentioned), but rather the posts from KA members who didn't have a sore or grumpy day. No, they had a GREAT day in spite of their AS (wow, imagine that), and they just can't wait to tell their friends about it. They want everyone to know that good things do happen to folks with AS, and they happen every minute of every day, so that when another member is in his/her darkest hour, they might find their first patch of sunshine in weeks in one of those "Dam, life is good" kind of posts that we get here all the time. Every little bit helps, we all know that, and that's why every one of us is so quick to share good news, to let others feel our happiness when life sends some good vibes our way. Obviously, based on your assessment of what the average AS person is like, you've either never even noticed those glorious posts or they somehow didn't touch you enough to leave a lasting impression, which is kind of sad.

Finally, go ahead and look down on all of us, if that is what you have to do to survive your own AS. Look at our dour countenances, which is what you say you see in so many avatars, and see the stereotype you've created in your head of the average AS "sufferer," the one who apparently spends each day bemoaning the state of his/her disease to anyone who will listen and who can find little time in his/her day to think of anything else. Go ahead and think all this, because the rest of us know how much goodness and friendship you're missing by avoiding this place and its denizens. Go ahead and apparently remain so afraid of AS that you stay away from KA as much as possible because you seem to fear that the way we deal with AS is contagious and able to wipe out all the gains you've made with your positive thinking (oh yes, and your anti-TNF drugs, can't forget those *snicker*) if you spend even a moment to long here. Somehow, those of us who don't think like you do will keep on, keeping on, all the while meeting great new friends, finding the support we need during the dark times, and being there to provide our support when those friends are experiencing dark times of their own. Somehow, I think we'll be in much better shape than you will, even if you're having a pain-free day.

Brad