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Joined: Sep 2001
Posts: 6,238
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 6,238 |
OOOPS....So then I guess I should not have sent Bruno on an errand for me this morning. Bruno just figured if someone wasn't going to ever post again...well ..er ... something about absences being less conspicuous or something
Very protective chap that Bruno but I think this morning he was just being like you said, er a .. humorous and err supportive and ironic
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Joined: Mar 2008
Posts: 3,233
Imperial_AS_Kicker
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Imperial_AS_Kicker
Joined: Mar 2008
Posts: 3,233 |
Quote:
is manifest in the spirit of these responses. Politeness has prevailed, consideration, trying to see others viewpoints has prevailed, there has been the odd skirmish but all have retaine a pleasant demeanour, all have laughed a lot through this thread, friendships have prevailed and I am sure new ones developed. The whole thing rather than erode, has reinforced the spirit of KA and its members and the truth of their presence here, which is not grovelling attention seeking (other than that chap who interferes with all posts with attempts at silly humour, desperately hoping to be noticed) but friendship, support, understanding,a chat and a smile. I must say that KA's onward march seems tto me to be assured, simply because it is none of that of which it has been accused. it is throughout, reminiscent of the class of one of its admins, ( I suppose you will guess ) I love to be here. Thanks all for a fabulous debate.
Must add, though, I haven't the foggiest clue of the identity of that desperately silly attention-seeking chap that you mention!!!
Whoever the dastardly culprit might be, all KickAS members should unite and demand that the current administration put an end to those no-good activities at once!!!
Meanwhile, here's how I read your post:
is manifest in the spirit of these responses. Politeness has prevailed, consideration, trying to see others viewpoints has prevailed, there has been the odd skirmish but all have retaine a pleasant demeanour, all have laughed a lot through this thread, friendships have prevailed and I am sure new ones developed. The whole thing rather than erode, has reinforced the spirit of KA and its members and the truth of their presence here, which is not grovelling attention seeking (other than that chap who interferes with all posts with attempts at silly humour, desperately hoping to be noticed) but friendship, support, understanding,a chat and a smile. I must say that KA's onwward march seems tto me to be assured, simply because it is none of that of which it has been accused. it is throughout, reminiscent of the class of one of its admins, ( I suppose you will guess ) I love to be here. Thanks all for a fabulous debate.
Dow
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Joined: Apr 2009
Posts: 1,595
Gold_AS_Kicker
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Gold_AS_Kicker
Joined: Apr 2009
Posts: 1,595 |
Quote:
I think Alan should be tea boy
Oh my gosh Kevin - I think I need to get new glasses - I first read this as "I think Alan should be Toy Boy" and I thought you had completely lost it and that's what constant misery will do to a man's mind... 
Louise
Louise Happy to be a physio by day, not happy to be a Spondy 24/7! 
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Joined: Apr 2009
Posts: 1,595
Gold_AS_Kicker
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Gold_AS_Kicker
Joined: Apr 2009
Posts: 1,595 |
Louise Happy to be a physio by day, not happy to be a Spondy 24/7!
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Anonymous
Unregistered
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Anonymous
Unregistered
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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
i was just going to make some sandwiches......honest! 
sue
Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Joined: Nov 2003
Posts: 8,190
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Nov 2003
Posts: 8,190 |
LOL..I think it is suppose to be "Boy Toy" and yes I think he already is sandwich or no sandwich..lol don't let him fool you with his domestic demeanor he is a man of the world..a man's man...well maybe not a man's man but a woman's man with his table dancing abilities and his power to deduct high tips from poor unsuspecting swiss maids such as myself, Kat and Mig (drunk or not) do NOT let this tuna making, cheese baking, sandwich boy fool you for a minute!!!
Speak kindly, Live simply, Care deeply, Love generously, and BLAH, HA, HA, LOUDLY! every chance you get.
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Joined: Apr 2009
Posts: 1,595
Gold_AS_Kicker
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Gold_AS_Kicker
Joined: Apr 2009
Posts: 1,595 |
Oh No - I know Kevin's not a Welshman - so I knew he wouldn't mean "Boy Toy" !  (with my most sincere apologies to any real Welsh folks on here - my Yorkshire-born cousins tell me that in the UK they make these sorts of jokes about the Welsh...) But with Alan always trying to curry favour with Mig and shamelessly self-promoting his virtues, I thought Kev might think he could be in the running as a "Toy Boy"... 
Louise Happy to be a physio by day, not happy to be a Spondy 24/7!
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Joined: Oct 2001
Posts: 2,576 Likes: 4
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Joined: Oct 2001
Posts: 2,576 Likes: 4 |
Oh Kat, please share that unforbidden forbidden word in a PM please. For a fine craftsman of the blue streak such as myself, I think I just need to know that. Besides, I'm an admin--I should know what to watch out for, right? *grin*
Brad
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Joined: May 2009
Posts: 152
First_Degree_AS_Kicker
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First_Degree_AS_Kicker
Joined: May 2009
Posts: 152 |
I just read the thread up to page 5 and I cannot get the thoughts out of my head fast enough. Can I first thank Ronel for posting even if the discussion that followed may not have been what you expected. It has greatly helped me. I think it is the first time that I've been on this forum that I can actually truly identify with quite a few of you, if that makes sense.
I was very offended by Ari's posts too. But had to just laugh it off in the end because they make no sense. Not a normal AS patient?! TNF?! Phullease! LOL
The thing that strikes me about the original post and the posts agreeing with the strategy is this idea that AS can be cured. I do not believe in this to start with. It can be managed, not cured and I think for me THE most important thing is to accept that and not let that depress me. It is my lot in life and I have to find ways to deal with this, not ignore it.
As for the positive thinking strategy and not let the disease control your life, I was in denial for years and year which is why I can now say "That's me!" when Brad writes "for those of us who have AS in one of the most severe ways you can get it--extreme kyphosis, fusion of not just the spine, but pretty much every major joint to one degree or another, and EXTREME pain as a result of these other items".
If I would've understood anything about this disease I would've gone through the whole grieving stage that must happen as a result of coming to terms with any severe chronic disease 20 years ago and I would've investigated, researched, experimented and not trusted doctors as much as I did at times. And I may not have suffered the irreversible damage that I have to live with now. Then again, who knows. I also cannot split myself into half to create a control person! I only recently discovered that my kyphosis is caused (partially, fully?) by spontaneous fractures in my spine!!! I'm not an overly cynical person (though rather cynical, true), but noone is going to convince me that I could've prevented spontaneous fractures in my spine by telling me brain to not let it happen.
Maybe I could've prevented them or some of them by taking calcium supplements for the past 20 years. I could've definitely avoided some of the fusing by the appropriate excercises, but it is hard to excercise when even the slightest movement of the joint sends pain shoots up your spine. And I do NOT appreciate anyone telling me that I am weak because of that. It is NOT helpful and it is very, very arrogant. My pain is not your pain and for all I care the pain of some of the people on this board is what I would have on a good day whilst I know I cannot imagine the pain some others are going through. But I DO know about pain though. Some days/weeks/months it's worse, sometimes it's almost better. I have a high pain threshold and I very rarely complain about it to anyone but it affects every aspect of my life. And there is noone to help me. The doctors I've seen are useless, my friends don't understand at all, my family just feel sorry for me I think which I also cannot deal with.
So yes, very occasionally, I WILL allow myself to feel sorry for myself. I feel sorry for not being able to do some of the things I would love to do, like swim and run and carry my daughter on my shoulders. I feel sorry for the way I look. I am single and believe I will always stay single because of it. I feel sorry for the pain keeping me awake so I wake up tired and don't have as much patience with my daughter as I want to have. But in the end, I have accepted that this is my lot and I try to enjoy all the things in life that I can still enjoy. The small things in life, that are the ones that really matter. And even if I now have given up starch, I have managed to enjoy the foods that I still can eat (including tuna and Canadese cheddar and wine - you non-NSD'ers can have the bread, ok?). I am also trying other natural therapies and trying to experiment with what makes my body feel best.
If I can give one bit of advice to new AS patients it would be: knowledge is power! Read every bit of research, read about other patient's experience, ask them questions, as your doctors questions, make a list of all the possible treatments that are claimed to make a difference and if necessary try them one by one. And one thing that noone can deny as an important part of life for AS patients of course: stretch! Use it or lose it.
One last thing, regarding people feeling sorry for themselves. I don't have a problem with people having a vent, but what I ABOSULUTELY cannot stand is when someone writes about their suffering and someone else replies "Think that's bad? Try to walk a mile in my shoes, love." I have honestly read responses like that here and it makes me shudder. And is one of the main reasons why I rarely visit the General Discussion forum.
Oh and also, to Will who writes "it's not easy, it took me neerly 3 years to get where I'm at the moment." Come and talk to me again in 20 years buddy and I "may" take you seriously.
Last edited by Linella; 11/06/09 03:01 AM.
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