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Joined: Oct 2001
Posts: 2,576 Likes: 4
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Joined: Oct 2001
Posts: 2,576 Likes: 4 |
Triple digits are here! Since I posted those early novels on this topic, I saw that 99 on the odometer and figured it fitting if I were the person to put up post number 100! Clearly, you hit a nerve that needed to be hit with this post angelmom, so good job! I just haven't had time to read all the responses, but I hope you heard a lot of things you wanted to hear and that you feel better about your presence here--we certainly don't want to lose any of our members, since everyone here is a valuable part of the KA group.
Brad
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Joined: Apr 2005
Posts: 1,167
Steel_AS_Kicker
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Steel_AS_Kicker
Joined: Apr 2005
Posts: 1,167 |
Sharon, you've really had a rough go of things.  Some thoughts on settings... these are some of mine: In Personal settings, where it asks if you want to be visible in Who's Online, I've checked "yes." In Display settings, I chose "Forums" rather than Categories, my display mode is "Flat," my default views are "Collapsed," and my preview post screen default is "On." Try these if you haven't already, and let us know if this helps. I'm no expert on this stuff, but these settings work for me.
Blessings, Sigrid
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Joined: Dec 2005
Posts: 809
Ninja_AS_Kicker
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Ninja_AS_Kicker
Joined: Dec 2005
Posts: 809 |
Quote:
Sorry All...I am not happy!
I Thought the whole reason for Kick AS was to learn about the disease, gain knowledge and SUPPORT from others that are in the same situation as me.
Since I have become a member here 2 years ago, I have gone from loving this site where I couldn't wait to get on to respond or reply to going days and not even getting on and thinking about not coming back.
I have tried earnestly amid my own problems to always respond not to everyones post, because I do realize not everyone can respond to everything, but those who are in pain or asking for special thoughts and prayers or those going thru the same things as I...I basically have quit posting because I get NO response. It really hurts to see someone ask for the same thing and see some 20 or 30 replys then I put something on and some 150 people have looked and read it but only 2 have replied, and the two that did reply are dolls. When you read someones post who is obviously distressed and asking for thoughts and prayers, you have enough time to read it but you cant post and say hey just thinking about you...maybe I am just asking for too much. I think it is sad out of over 4000 people and 2 people respond to my post. I guess I wonder do you have to be in the popular part of AS? There are members here that make 1 post and everyone is all over them, which is great but that doesnt do much for the rest of us. I read all of our newbies post about how great the site is and all the wonderful support and Im thinking.....where???
This is the one and only site I have been in for support...I have to say I have been extremely depressed and depressed over this. You can call me silly and emotional I dont care, and I do know of others that feel the same as me...if admin wants to edit my post then that will be it.
I have never done anything but try to be an encouragement to EVERY member here, all I wanted was the same respect.....ok, now you know how I feel...good, bad I dont care, I will probly just do like alot of the others on here have done and disapear, doesnt seem like any one would mind. At least I have said my peace.....I am not looking for pity, I just want you to think about how each of your actions can effect other people.
Lisa
In the past few days I feel like I have been through the mill on this sight. I find people respond but they have not listened to my story and by not listening, they have given gratuitous information. I find that there has been a level of harrassment that has not been the least enjoyable.
However, Lisa, there are people like yourself, and yes like Zelia, who respond out of love, and not out of wanting to push the latest fad.
Personally, I am not sure whether I will hang around all that often. The only reason for doing so is that Sigrid and Heather have been so wonderful and so many people have similar symptoms that I no longer think it is only coincidence.
So thank you for posting this thread. I hope that things will improv for you.
Maggie
Today is the first day of the rest of my life
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Joined: Oct 2001
Posts: 2,576 Likes: 4
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Joined: Oct 2001
Posts: 2,576 Likes: 4 |
Hi Maggie,
I am sorry that it sounds as if you have not had a positive experience here at KA. Those of us who have been here a while always hope that everyone finds either information or comfort here (or both, as needed), but of course that doesn't always happen. Things that can keep it from happening are hitting KA at a time when lots of people are involved in their own crises, and thus not up to posting as much as usual; occasionally making a post at a time when lots of other posts pop up at the same time, pushing new posts quickly down the board, which causes some people to miss the post altogether (esp. if their setting only put 10-20 messages on one page); simply catching folks on a bad or busy day; etc. Of course, there expectations can also fail to be met because of one thing you mention--sometimes people just don't read a post correctly and end up not really offering answers or advice that are directed toward the issues that were raised in the first post. I won't even try to deny that this happens--I'm sometimes rather bad at taking a post that strongly relates to something I've gone through and then making my answer more about me than about the original poster, which isn't fair. It often helps to relate your own experiences when answering a post, but you raise a good point that it is important for anyone who replies to try to focus directly on the questions that were asked and to phrase any responses in such a way that they emphasize the poster's situation, not their own.
When that happens, you just have to be patient and sometimes try, try again. Either rephrase your post deeper in your original post when you get answers that seem off track to you, or, and sometimes this is better, repost your situation as a new main-level post. When you do that, you can just politely thank the folks who did take the time to answer your original post, but make it very clear that the main issues you wanted to discuss still haven't been tackled. I'm sure many people feel they shouldn't have to do that, that they already stated their issues as clearly as possible, and it's not their fault that the people who responded were off-track, and that's true to a large degree. It especially stinks to have to do something twice if you're really in pain or having other problems, I know. However, just try to remember that almost everyone in here is in some degree of pain or discomfort, and that everyone really does try to do the best they can. In time, as people get to know you're style better, you will probably start to get answers that get to the point a bit quicker than they did at first--at least I hope so.
One thing in your post I am rather curious about, however--you say that you have experience "a level of harrassment that has not been the least bit enjoyable." I have to say that this does NOT sound like the KickAS I know and love at all. I freely admit I have not had the time lately to read many of your posts, but if you could perhaps point out some posts or threads in which you feel you have been harrassed, I would be very interested in seeing those. Or, are you saying that you have seen harrassment directed at other posters? God knows, we've had our share of battles here in the past, especially about the role of the No-Starch Diet as part of an overall AS treatment plan (and I'll be the first to tell you that I've been deep in the middle of those, although I'm a tad more moderate now), but the moderators generally do an excellent job here of NOT allowing any kind of harrassing or negative behavior. Thus, if you have experienced this, I think it is important to point this out to one of the mods to see if they agree with your interpretation of the posts in question. If this has occurred, I am sorry that you have experienced this and hope it does not happen again.
In closing, I would offer one more word of caution about your expectations of what responses you hope to receive, and I'm not trying to be glib or negative here. All I want to say is that, while this is a great place for information on AS, and by and large it is a very, very friendly community, it can sometimes be easy to get your expectations up a bit too high when you first find KA. I know I did--it was like finding a beautiful oasis in the most vast desert I had ever walked in, and once I found it, I thought all the answers about the mystery of AS would be at my fingertips! Well, it just doesn't work that way, unfortunately. There are reams and reams of information to be gathered here, and more friendly people than you can shake a stick at, but AS seems to be such an individualized disease that sometimes it can be hard to get the answers you want, which can be very, very frustrating.
When you find all these other people who have the same disease you have, it's easy to think that with so many of us here sharing this common bond, that we should have encountered every possible problem by now, and thus at least started working on every possible answer. If only that were true. Every dang day we seem to see a new problem caused by AS, a new quirk manifest itself that no one has encountered before. When that happens, and everyone reads about this new wrinkle, frankly, I think that sometimes we ALL become discouraged by these developments and simply can't deal with it anymore. Either we simply have nothing to say in response to your post because it's outside the realm of all of our experiences, or we simply become too down to even think of a coherent response. Doesn't happen too often, and I'm definitely not saying that it is what happened with your posts that might have received very few responses, but it can happen. I guess I'm just saying that it's important to bear with everyone and give them the same benefit of the doubt that you are due--we all just get plain overwhelmed by this awful, awful illness sometimes, and it's just too much to talk about anymore. If you look back through this thread, and through several other big threads in recent months, you'll see a lot of the more long-time board members saying that they are just simply burned out right now by AS and are having trouble finding the energy to answer ANY post, new or old. This happens from time to time, but as the old saying goes, this too shall pass. And, as new members like yourself join KA, YOU become the main sources of information, the sage, old members who newbies rely on to pass on the wisdom and advice. It's that whole circle of life thing, acted out right here in this lil' ol' internet forum.
So, I hope you don't take off, and I hope you keep an open mind about giving everyone here plenty of chances to shine, because they almost always will in time. And, in time, I have no doubt that you will shine plenty of times on your own.
Best,
Brad
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Joined: Dec 2005
Posts: 809
Ninja_AS_Kicker
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Ninja_AS_Kicker
Joined: Dec 2005
Posts: 809 |
Quote:
Hi Maggie,
I am sorry that it sounds as if you have not had a positive experience here at KA. Those of us who have been here a while always hope that everyone finds either information or comfort here (or both, as needed), but of course that doesn't always happen. Things that can keep it from happening are hitting KA at a time when lots of people are involved in their own crises, and thus not up to posting as much as usual; occasionally making a post at a time when lots of other posts pop up at the same time, pushing new posts quickly down the board, which causes some people to miss the post altogether (esp. if their setting only put 10-20 messages on one page); simply catching folks on a bad or busy day; etc. Of course, there expectations can also fail to be met because of one thing you mention--sometimes people just don't read a post correctly and end up not really offering answers or advice that are directed toward the issues that were raised in the first post. I won't even try to deny that this happens--I'm sometimes rather bad at taking a post that strongly relates to something I've gone through and then making my answer more about me than about the original poster, which isn't fair. It often helps to relate your own experiences when answering a post, but you raise a good point that it is important for anyone who replies to try to focus directly on the questions that were asked and to phrase any responses in such a way that they emphasize the poster's situation, not their own.
When that happens, you just have to be patient and sometimes try, try again. Either rephrase your post deeper in your original post when you get answers that seem off track to you, or, and sometimes this is better, repost your situation as a new main-level post. When you do that, you can just politely thank the folks who did take the time to answer your original post, but make it very clear that the main issues you wanted to discuss still haven't been tackled. I'm sure many people feel they shouldn't have to do that, that they already stated their issues as clearly as possible, and it's not their fault that the people who responded were off-track, and that's true to a large degree. It especially stinks to have to do something twice if you're really in pain or having other problems, I know. However, just try to remember that almost everyone in here is in some degree of pain or discomfort, and that everyone really does try to do the best they can. In time, as people get to know you're style better, you will probably start to get answers that get to the point a bit quicker than they did at first--at least I hope so.
One thing in your post I am rather curious about, however--you say that you have experience "a level of harrassment that has not been the least bit enjoyable." I have to say that this does NOT sound like the KickAS I know and love at all. I freely admit I have not had the time lately to read many of your posts, but if you could perhaps point out some posts or threads in which you feel you have been harrassed, I would be very interested in seeing those. Or, are you saying that you have seen harrassment directed at other posters? God knows, we've had our share of battles here in the past, especially about the role of the No-Starch Diet as part of an overall AS treatment plan (and I'll be the first to tell you that I've been deep in the middle of those, although I'm a tad more moderate now), but the moderators generally do an excellent job here of NOT allowing any kind of harrassing or negative behavior. Thus, if you have experienced this, I think it is important to point this out to one of the mods to see if they agree with your interpretation of the posts in question. If this has occurred, I am sorry that you have experienced this and hope it does not happen again.
In closing, I would offer one more word of caution about your expectations of what responses you hope to receive, and I'm not trying to be glib or negative here. All I want to say is that, while this is a great place for information on AS, and by and large it is a very, very friendly community, it can sometimes be easy to get your expectations up a bit too high when you first find KA. I know I did--it was like finding a beautiful oasis in the most vast desert I had ever walked in, and once I found it, I thought all the answers about the mystery of AS would be at my fingertips! Well, it just doesn't work that way, unfortunately. There are reams and reams of information to be gathered here, and more friendly people than you can shake a stick at, but AS seems to be such an individualized disease that sometimes it can be hard to get the answers you want, which can be very, very frustrating.
When you find all these other people who have the same disease you have, it's easy to think that with so many of us here sharing this common bond, that we should have encountered every possible problem by now, and thus at least started working on every possible answer. If only that were true. Every dang day we seem to see a new problem caused by AS, a new quirk manifest itself that no one has encountered before. When that happens, and everyone reads about this new wrinkle, frankly, I think that sometimes we ALL become discouraged by these developments and simply can't deal with it anymore. Either we simply have nothing to say in response to your post because it's outside the realm of all of our experiences, or we simply become too down to even think of a coherent response. Doesn't happen too often, and I'm definitely not saying that it is what happened with your posts that might have received very few responses, but it can happen. I guess I'm just saying that it's important to bear with everyone and give them the same benefit of the doubt that you are due--we all just get plain overwhelmed by this awful, awful illness sometimes, and it's just too much to talk about anymore. If you look back through this thread, and through several other big threads in recent months, you'll see a lot of the more long-time board members saying that they are just simply burned out right now by AS and are having trouble finding the energy to answer ANY post, new or old. This happens from time to time, but as the old saying goes, this too shall pass. And, as new members like yourself join KA, YOU become the main sources of information, the sage, old members who newbies rely on to pass on the wisdom and advice. It's that whole circle of life thing, acted out right here in this lil' ol' internet forum.
So, I hope you don't take off, and I hope you keep an open mind about giving everyone here plenty of chances to shine, because they almost always will in time. And, in time, I have no doubt that you will shine plenty of times on your own.
Best,
Brad
Hi Brad,
you are a real sweetie. Thank you for a rather involved and intuitive reply. (my keyboard is behaving like Heather's carbon paper at the present time so please forgive the typos)
I will stick around but post less and less. I have met a few women here who have been very helpful and supportive and it seems we share the same symptoms. I am undiagnosed at the present time, but my doctor is having a new look at my files and my old x-rays. I had new x-rays today and am waiting to hear the results (I have an appointment for next week that will coincide with my return from our trip to Melbourne and I will not be on the Internet for at least 6 days)
I notice that you are from Detroit. Do you live anywhere near Lincoln Park? I have relatives in that area.
Maggie
Today is the first day of the rest of my life
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Joined: Oct 2001
Posts: 2,576 Likes: 4
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Joined: Oct 2001
Posts: 2,576 Likes: 4 |
Hi Maggie,
Thanks for the kind words. Glad to here you'll at least be lurking, and hopefully, in time, you'll find more and more reasons to make posts and dive into the deep end with us.
As for Lincoln Park, not super close, but not terribly far from there either. That's a Downriver community (about 10-20 miles south and east of me), and I'm in one of the northwest suburbs, not far from the border between Wayne and Oakland counties. Originally from Flint, and lived in Michigan my whole life.
Hope to see you around.
Wow, just looked and noticed that you live in Sydney! Which, of course, explains why you are awake and posting (but sure doesn't explain why I am--it's 2:30 a.m. here!) How did you end up with relatives in Lincoln Park, of all places? Are they originally from Australia? If so, amazing that anyone from that far away would end up in a small, random town like Lincoln Park, Michigan.
Brad
Last edited by wolverinefan; 02/02/06 07:36 AM.
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Joined: Dec 2005
Posts: 809
Ninja_AS_Kicker
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Ninja_AS_Kicker
Joined: Dec 2005
Posts: 809 |
Quote:
Hi Maggie,
Thanks for the kind words. Glad to here you'll at least be lurking, and hopefully, in time, you'll find more and more reasons to make posts and dive into the deep end with us.
As for Lincoln Park, not super close, but not terribly far from there either. That's a Downriver community (about 10-20 miles south and east of me), and I'm in one of the northwest suburbs, not far from the border between Wayne and Oakland counties. Originally from Flint, and lived in Michigan my whole life.
Hope to see you around.
Wow, just looked and noticed that you live in Sydney! Which, of course, explains why you are awake and posting (but sure doesn't explain why I am--it's 2:30 a.m. here!) How did you end up with relatives in Lincoln Park, of all places? Are they originally from Australia? If so, amazing that anyone from that far away would end up in a small, random town like Lincoln Park, Michigan.
Brad
Hi Brad,
my aunt Doreen married a US citizen and they ended up in Lincoln Park. My uncle John worked at Ford. He died almost 20 years ago from lung cancer. They had seven children but my cousin Jimmy passed away because of a heart condition two years ago (a few months before my dad passed away as a result of strokes). Jimmy had what is known as an aneurysm.
The family lives around Lincoln Park 
Maggie
Today is the first day of the rest of my life
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Joined: Oct 2004
Posts: 503
Veteran_AS_Kicker
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Veteran_AS_Kicker
Joined: Oct 2004
Posts: 503 |
Hi
Please note i do not wish to cause trouble at all here. But i think u will find maggie has already done some of the things u have listed in response to how she feels about one of her latest posts (forgive me i have a cracking headache and cant recall the name of the post at the min)> She has made it clear she feels people r goin off the point on several occasions. In fact i have never before on kickas seen a post reacted to in the same way as maggie's has. Maggie has quite clearly stated her views on the subjects that have been raised, and i have seen at one point the moderators have had to step in.
I can see y maggie feels this way. I too hope this never again happens to another fellow member.
take care
heather
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Joined: Dec 2005
Posts: 809
Ninja_AS_Kicker
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Ninja_AS_Kicker
Joined: Dec 2005
Posts: 809 |
Quote:
Hi
Please note i do not wish to cause trouble at all here. But i think u will find maggie has already done some of the things u have listed in response to how she feels about one of her latest posts (forgive me i have a cracking headache and cant recall the name of the post at the min)> She has made it clear she feels people r goin off the point on several occasions. In fact i have never before on kickas seen a post reacted to in the same way as maggie's has. Maggie has quite clearly stated her views on the subjects that have been raised, and i have seen at one point the moderators have had to step in.
I can see y maggie feels this way. I too hope this never again happens to another fellow member.
take care
heather
Heather,
thank you and I hope you feel better soon. I took some extra Neurontin and it has helped to bring my pain under control.
Maggie
Today is the first day of the rest of my life
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Joined: Apr 2002
Posts: 3,739
SENSational_AS_Kicker
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SENSational_AS_Kicker
Joined: Apr 2002
Posts: 3,739 |
Hi Maggie
Sadly, your reaction to how people answer your posts is one of the reasons I rarely reply to posts now. I, and probably many others, do not feel we have the right thing to say. Unless I misunderstand you, you are confirming that often we do NOT say the right thing.
Angelmom, I hear you loud and clear. I hope I've just, at least partly, explained myself.
However, KickAS has truly been a lifesaver for me. I, in no way, intend to speak badly of KickAS as a whole. I love it here.
Maggie
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