Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Where Is The Love???

I think Maggie's post has to do with people continually telling her about the no starch diet.

I think sometimes people respond to a post without reading all the previous posts..

The people that I saw mention it, did go back and apologize..I dont think it was mentioned on anyones part to hurt, or rub it in...I think people were just trying to say what helped them.

Maggie is going thru some rough things right now...I hope you dont leave and I do hope there are better days ahead.

Lisa

I don't normally like to make a negative point on here, being confrontational averse and very mindful of the state of mind I often come here with and therefore always keep in mind others may feel crappy and not at their cheeriest (understatement for me most of the time!). But I do want to say again that i personally would rather people put their experiences out there for me to see, i don't have to read it or take it any further, but someone else might and benefit as a result.

As Lisa pointed out often when a post runs away people don't get a chance to read all the replies as they want to respond to the original post, and sometimes things spring to mind and a post gets a little hijacked for a while, but there's no need to be rude and hurt other people feelings who have taken the time to respond.

Hi Maggie from Canada,

I am pleased to make your acquaintance. You are partially right about what you are saying, but you should not be afraid to reply and at least give some form of support.

My beef,in part is what Lisa has indicated. I felt that I was being harassed by people who have been on the NSD and they have not bothered to read my post before making replies.

It is more than just about NSD. It is all of the second guessing. The particular thread was simply asking if anyone had experienced a particular style of muscle spasm. I did not want or need a dx because my doctor is well aware of the spasm.(I had at least one episode in his office, so he observed exactly what happens and how it happens). I did not need the NSD crowd butting in with their panacea of all ills, and I did not need someone giving information on something that was over and done with back in 1999 when I had my last bout with giardia (which was cured by having the medication).

Personally, I do not believe that my diet has anything to do with my condition. My tests for HLAB27 came back negative. However, my grandmother and her sister had inflammatory arthritis. My great aunt was diagnosed with RA and she was treated with gold. My grandmother was dx'd as having undifferentiated arthritis. My mother and sister both have arthritis in their back, and I think that what has given this a kick start is a car accident, as well as other trauma that I have received. It is all just too coincidental.

We can all give support, and if we have experienced something that someone is asking about, then yes we should reply but not if the reply is going off at a tangent which is what happened in my thread.

The most annoying aspect of that thread was the ridicule that I received over wearing a pedometer, which is a measure of my daily activity, and an incentive to keep up a certain level of activity. It is not a fancy piece of equipment. It is small and it fits on the waistline of my jeans. If I wear a dress then I cannot wear the pedometer and I have a holiday from wearing it. I found the pedometer to be a huge help to keep on going when I have been totally exhausted and my feet have been hurting so much that I can barely walk.

When people post asking saying stuff like: have you considered walking before work or at lunchtimes, I feel like I want to choke them because I know that they have not read my posts properly. I have explained my situation, including the fact that at the moment I am unemployed (an added stress). The idea of wearing the pedometer also includes measuring any of the extra activity so that I reach my daily goal. I cannot see why that is so hard for some people to understand.

This is the reason that I am feeling so browned off with this site. Lisa is right a couple of the people did apologise but there are others who made no such apology and have become quite aggressive in approach. This is very upsetting. I do not appreciate messages saying things about not having a thingy with a head bashing against a brick wall, for the very reason that it is ditto for me. The poster had not bothered to read my posts properly and has not respected the fact that I am not a person who will go on any fad diet. The ridicule of the food pyramid has added further fuel to the fire of how I feel. My comment is not even about the food pyramid, since that is just a representation of how much of each type of food in each section of the pyramid it is recommended that we eat. I have mentioned the glycaemic index on several occasions, since it makes a lot of sense, but that seems to have gone over the heads of some posters.

I wanted them to back off because I felt that I was being inundated after I had stated from the beginning that I am not interested in the NSD. Some people do not know how to take no for an answer. No one knows the long term effects of such a diet anyway. No one knows the harm that it might cause. I am not taking the risk.

Maggie from OZ

Hehe (laughing at myself), I am guilty of feeling the NSD was being pushed in a way similar to those who are religious and say "if you just found God, things would be better." So I understand what you mean. But I also know if I ask for advice, anyone here can answer. And they have the right to their opinion and most people like that definately have one. But then again, I have also been accused of telling people what to do when I was only intending to help. I'm sure I've upset a few people here. I'm also on meds a lot when I reply and can't choose the best words all the time. I've been upset and logged off only to come back and find out I misread the post. We are only human. But we all are either hurting or have hurt in the past. That's the one thing that connects us all. There are no wrong or right answers. We just have to do what we feel is best and ignore what makes us feel worse. Easier said than done. That I can say with confidence.

Sharon

Hmm, curiouser and curiouser. Maggie, I certainly didn't realize all of this was behind your point about being "harassed" here at KA, but I definitely understand a little better about what you are saying. Since I've already added far, far more than my two cents worth here, maybe I should just let things be, but what the heck--if I'm up to $1.20 already, might as well shoot for adding my $2 worth!

You are not the first person, nor will you be the last, to be put off by talk of the NSD here. Believe it or not, it is much less of a factor than it used to be because the admins wisely started a separate NSD forum where advocates can easily share information. Back in the good old days (or bad old days, depending on how you look at it), NSD vs non-NSD threads were littered throughout the main forum on a seemingly monthly basis, and several times the threads got downright nasty (trust me, I'm not downplaying the experience you just had, but man, if you had seen some of those old battles--oh my, you wouldn't have just thought about leaving, you likely would have ran as fast as you could and wondered what you almost got yourself into!).

And, as I will be the first to point out, I was right in the middle of those old "debates," very firmly on the side of the non-NSD folks. Not because I didn't believe it worked--I firmly DO believe it works for many people, and in that I think I differ with you when it comes to an overall view of the diet. I definitely don't think of it as a "fad" diet--I think of it as a complete lifestyle change that has absolutely helped many people here greatly reduce or eradicate their AS symptoms. Even though I feel that way, I also firmly believe that it is not for everyone, that it is so complicated and so rigid, that to take the full NSD plunge is to completely change one's life, and that was not for me. As I pointed out then and still believe, AS has cost me so much in my life, that I am not about to give up good food that I love to eat, It is one of the remaining sources of pleasure in my life, and I just do not have the discipline to give up starchy foods. Can't do it, no way. If I was told I would die tomorrow if I ate one more starch, I'd still have a hell of a time quitting, and I'm serious. Sad to some, I'm sure, but again--when sources of pleasure are few and far between, I firmly believe that quality of life starts to matter as much as quantity. And for me, enjoying the time I have here the way I want to, using the medicine available to fight my pain instead of using food, is the way to go. Other folks here feel the same way I do, many others don't.

More to your points here, in my mind, it was never the fact that some folks support the NSD that really caused the problems--it was the other facet of the diet that you are directly talking about here. There is no denying that some of the NSD advocates are very zealous in there support of the diet, sometimes simply overzealous. This happens far less than it used to, because I think most folks realized that it did no good to try to "convert" nonbelievers and that the continuing battles would only hurt KA. Also, folks who don't support the NSD, such as myself, made a conscious effort to reduce the rhetoric and anger on their side to. I have most definitely mellowed toward the advocacy of the diet, and when new folks ask about treatment options, I always mention the diet as a valid choice and encourage them to check out the NSD forum and talk to Dragonslayer and other leaders of the diet plan. I feel it is essential that everyone hears about all possible treatments that could help them out. Who am I to ultimately say what works and what doesn't? Dozens, if not hundreds, of KA members swear by the benefits of the diet, so it clearly works.

I hope that background information helps you put into perspective why you might have been "bombarded" by almost religious-sounding posts advocating the NSD. These people were definitely well-meaning and were only trying to help you, although it sounds as if things might have gotten a tad contentious when you expressed that this route wasn't for you. That's a completely normal reaction on your part, and I understand it completely. What I would recommend is this: folks don't really consciously try to "hijack" a thread, at least not usually. Almost every post here at KA is left because someone genuinely wants to help. Unfortunately, that does mean that they will post things that are meaningless to you, sometimes because they didn't read your posts, sometimes because they did read them but still felt they had to add their thoughts even if they did seem to be very off-topic. The best way to tackle this, I think, is to simply skip and ignore a post the minute you realize it just doesn't address your post. Simply view it as a bit of interference, an annoyance for sure because you don't want to waste your time here either, but even when you do that, try to think of it as someone who was trying to help in some way by leaving that post and just move on. Now, if someone says something negative about you or otherwise challenges you, yes, you can certainly take offense to that, as anyone would. Once that happens, all bets are off, and how you handle it is totally your choice and your business! Some folks go the PM route, which is usually best, but if you feel your character has been impugned and want folks to know what you think is the truth, keep it public, baby, keep it public--but be ready for the fallout for doing so.

I guess that the bottom line for me kind of echoes Sarah's post above: When I make a post, I know in advance that not all of the answers I get are going to be relevant or necessarily helpful. Even knowing that, however, I am glad to see every response I do get, because then I at least know that people took the time to open my post and leave a little bit of themselves behind to try to help me out. Yes, sometimes I can tell they haven't read all of my post, and sometimes I can see that they are just following their own agenda when they reply. I guess this has just never bothered me--I simply skip those posts once I know what they are and move on the the posts (and people) that I do want to follow-up with. Even if I get 10 "bad" replies for every good one, the good ones are usually SO good that they are worth their weight in gold and far, far outweigh the dreck I had to cut through to get to that one post. Certainly, I am not telling you that this is the way YOU should view your posts and their responses--that is entirely your choice, and only you can determind the ultimate value of this forum, a decision you are clearly making now. I am just saying that, if you have received some help so far, and you think you can find more help and more friends here, then why should you throw out the baby with the bathwater? Finding good people who will really listen and sympathize with you, or take the time to share invaluable information with you, is getting hard to come by these days because there are SO many media avenues and day-to-day experiences demanding our attention every day that is getting harder and harder to know where one's time is best applied. If that's true, and I think it is, then when you find a site like KA that can potentially provide life-changing information, then it's probably a good idea to find a way to hang out here with the rest of us loony tunes. I mean heck, the loonier, the better! We need all the AS folks we can get, so I hope everyone who's had negative experiences lately can find a way to cut through the crap and stick with us here--we inmates are definitely more fun than any non-AS civilians, trust me!

Thus concludes my broadcasting evening, since it is now 10 minutes after 7 in the morning and I have made it through yet another all-nighter. My sleep patterns are SO messed up right now that I figured I might as well come here and try to answer more posts. Good decision or bad? I'll leave that up to you!

Hope you're feeling better,

Brad

Dear Maggie, as the author of the giardiasis post, I do find that your response has been troubling to me in just the way that Sarah D described. I believe that the giardia-reactive arthritis connection is an important one, because it represents a treatable form of spondyloarthropathy, and it is a possibility that may have been overlooked for some individuals, as it was for six years for my son, because it is a connection that not often considered by doctors, despite being a well described condition with numerous case reports in the medical literature. My post was indeed made in direct response to your own reporting of a history of giardia infection-although indeed it was not made in response to the overall muscle spasm heading. If you feel that the concept is not helpful to you based on your own personal history, then you may choose personally not to follow through on it, but in my opinion it is not helpful or appropriate to be broadly dismissive of the concepts of: 1) continued giardia infection post treatment - it is indeed possible for this to happen to individuals, based on treatment failure or on reinfection, even though many, even most, cases are easily treated. 2) reactive arthritis as a long-standing condition which can lead to chronic inflammatory arthitis 3) giardia as a well recognized infectious agent in eliciting reactive arthritis, along with a number of other recognized infectious agents. Here is a link to a recent comprehensive review on reactive arthritis, common etiological agents are listed in table 1:
http://www.ima.org.il/imaj/ar01sep-11.pdf

Is there a site out there with more science and less whining.
That would surely be helpful.
BTW this is my last post.

sheesh- "cant we all just get along" in the famous words of rodney king??????????

i have changed my diet to only a wheat free -gluten free diet/lasctose free and i have so far not had any bouts with diareaha so far.
that being said i am not going to do a nsd as i think it is alittle over board.
i will see how i fare with a wheat free gluten free and lactose free before i take this the next step.
i am now on celadrin softgels to fight the inflammation and glousamine chrondrtion w/ msm in powdered form

it has not helped my psoriais in my scalp that being said neither has the clobestral either or the coal tar shampoo.
or the anti fungals that the docs put me on for 3 yrs so i know it isnt a fungal and if it was cancer it would have killed me by now.
there is just so far i can do with out being a fanatic about this illness. i am not gonna do the DMARDS as i am not going to put my body further at risk and i am not going to take MTX or cellucept or any of the other junk.

i have my si joint already fused on my left side.
i take daily amounts of coral calicum which is liquid and before bedtime. it has 70 trace minerals in it also by drinkables brands.

this is what helps me. i do not push it on anyone else. it just so far works for me.
take what you want of it and use if if you like, if not then ignore it

With our apologies to the thread’s author, Angelmom, we have decided this thread has deteriorated to the point of being more disruptive than it is beneficial.

Please be mindful that KickAS exists for the support of those suffering with the pain of AS. Your consideration and cooperation to help turn the page on this matter would be deeply appreciated by the many who seek out KA in the hope of finding a supportive place to share with and learn from others.

Thank you for understanding.