Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group My brother's success: AS in remission....

Hi everyone,
I think it is important to say again that we are all different and the way we cope with this illness also differs. Some of us do have this very severely and suffer for as long as we could remember. Others may be more "lucky" and do not have it so badly. We have to admit that and remember that what may be mild to some, may be extremely bad for others. How can we compare something as subjective as pain? And I know that in the end no one would want this. We all want to be healthy!
Please note that I never speak of thinking positively. I know that saying, "I feel fine", when in fact I have so much pain, will not do it for me. It is just not working that way. My approach to this is that I may feel sad and worried and negative. I may experience any feeling I choose. But somewhere along the line I also want some hope, some light, something to hold on to. I want to get better, I want to heal. And I would not let anyone take that from me. That is giving me the energy to cope, to hang on and to stay at least not devastated by this illness.
If something like yoga or meditation could help those of us who have this illness more mildly, please let us believe in it and respect that. If keep believing in the NSD is helping us, let us keep that belief. Maybe, just maybe, we who are at the beginning of this journey, can turn this around with selfhelp books, meditation, etc. Give us that hope, please...
I am really so sorry if this offended some of you who suffered for years and years. It was never my intention. I respect you and want you too to get better.
It was my experience since I came to this forum that "success" stories were not accepted well, and I was worried. Should we then rather keep quiet about it and not give some hope? If only one person can turn this around and become better, wouldn't that be a miracle? Wouldn't we all feel joy for that person?
Take care

ronel,

i for one am glad that you posted this "success story". and yes, i do think hope is important, but i think what gives each of us hope may differ from person to person. i don't think anyone should be afraid to post success stories but i also don't think anyone should be afraid to post their struggles either. i think the success stories will help some people and seeing the struggles of others will help other people. mostly i think its important that we can have an exchange of ideas and differing opinions in a respectful way. i'm sorry if i made you feel badly for posting this, that was never my intention; i just wanted to give my perspective.

Well said Brad I agree with everything you have written and think you have spoken for all of us with severe AS.
I couldnt have put it better.
You take care Kevin

Ronel,

I know that my posts were among the most strident and probably among the ones that nade you cringe more than a little. For that I am sorry--I did not mean for any of my posts to be an attack on you, I promise. Rather, I was upset by some of the more cavalier responses that followed, and then mainly because they touched a nerve due to many posts that have been made through the years that express a similar point of view.

I meant what I said when I said I was very happy that your brother was doing so much better--I am happy to hear about anyone with AS who is doing well. And what you said in this most recent post is very true: if someone has found something that works for them, be it positive thinking, believing you are more than the disease, yoga, the NSD, or anything else, then it is important that others respect that person's belief in what worked for them. And, believe it of not (I wouldn't be surprised if you choose "not" after the tone of my posts), I absolutely do respect you and your brother and respect the choices you are making in battling your AS.

The one thing that I have a very real problem with, however, did come to the surface in this thread, but that was absolutely through NO fault of your own--I want to make that totally clear, ok? You were posting your brother's statement, and simply trying to share good news with the forum, which is always a plus. The one thing I have a problem with was touched on in your brother's letter--I won't try and lie about that--but it was really hammered home by one user later in the thread. And, just to clarify again, that one thing is something that has come up time and time again through the years here at KA, and it has caused a bit of strife almost every time it pops up. Quite simply, that one thing is this: On more occasions than I care to remember, posts have been made that essentially say to all KA members: "If only you would stop being so negative, if only you would take ownership of your disease and refuse to let it rule your life, you could be cured like me!"

In other words, many people here who have suffered greatly for a long time--myself included--feel as if we are being told, in no uncertain terms, that we have no one but ourselves to blame for being sick. That if only we would stop thinking about the disease and start thinking about being well, we would be miraculously healed. You know, I can actually believe that line of thinking for the absolute mildest forms of AS that has been caught at the earliest stages . . . . maybe. But 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 . . . well, I think you can understand why it might make me, and others like me, a little bit angry to be told that if only I had thought differently, if only I hadn't been such a negative person about my disease, I'd be fine now. Honestly, I can't even adequately express to you how incredibly hurt I was the first time I read that sentiment here in KA.

At the time, I was, like the folks we have been most worried about in this thread, a new and impressionable member of KA (I cannot remember the month or even the year, but I hadn't been here long). My disease was better then, but it was still bad, as I did not find KA until quite some time after I had had both hips replaced and a spinal osteotomy to try to straighten me out some. Here I was absolutely thrilled to find this place, and then, bingo, I read a post that tells me my illness is all my fault. That I had the power to stop my disease at any time, but I chose not to because I just couldn't overcome my negative energy and break through to the positive side of things. I'm sure I am overstating the potency of that actual wording in that post, but not by much, not by much at all.

I was devestated at first, but then anger took complete control. In my early days, I was even more of a brigand and hothead than I can sometimes be now (those of you in the peanut gallery can just shush up right now--I've owed up to my misdeeds long ago, and you must have liked the way I cleaned up since you made me an admin! ). When I read that post, I let loose with a ripping response of my own, basically telling that person, "How dare you try to blame me for this horrible disease." I'm sure I used a few words that earned the *BLEEP* notation--maybe more than a few--but boy did I feel better after I'd let loose. I wasn't the first to post, nor was I the last, and after I settled down, I took the time to read all the other posts and was very, very relieved to find that I was not alone in my anger and hurt. Quite a few others felt the same way I did, and once I saw that, I decided that I would stay here after all and give it another chance, as I had already decided that any site that had folks who felt the way the original poster did was a site I didn't need to visit.

Anyhow, I hope this lets you better understand my reaction today and does help convince you that any anger I had in this thread was not directed at you in any way. Now, if your brother had posted his letter himself, I am sure I would have posted my objections to a few of the statements he made that drifted toward that "we can all heal ourselves" idea, but because he was so polite and not in any way trying to force his views on others, my response would not have been an angry one, at least not like that post from long ago was. (I did forget to mention in my statement above that the other thing that pushes my buttons when someone makes a general "you can heal yourself just by thinking it" type post is when they also make it clear that their way is the ONLY way to truly treat your AS, and that anyone who tries something different is just wasting their time. There is little I can't stand more than when someone tries to force his/her beliefs down my throat--that is probably my A-No. 1 hot button. Clearly, your brother did nothing even close to that.)

Additionally, as you might have read in other posts, I am going through a very rough patch right now. My insurance has been incorrectly canceled, and I am fighting right now to win my appeal and get it back (which is absolutely what SHOULD have happened already), Because I have no insurance, I am five weeks overdue for my Remicade treatment, and I am basically in agony right now. I am typing this on my laptop from the comfort of my big comfy recliner, which is ok, but I am only still in my chair because I dread how much it is going to hurt when I stand up to go to bed. Well, that and my stupid insomnia, which had disappeared the last week or so but was back with a vengeance tonight. As a result of this pain, I am quite a bit grumpier than I normally am, and thus it might have appeared that I was either angry with you for posting, or very upset at what you posted, which, as I've explained, isn't really the case.

As for your assertion that you have seen posts involving success stories receive poor receptions here at KA, I have to admit that this does surprise me. In my experience, success stories--either of the long-term kind or even of the "hey, I had a great day!" kind--are usually warmly welcomed and met with posts that say, in one way or another, "good for you, that's great to hear." Now, I will admit that when those success stories drift into alternative treatments--sometimes VERY alternative treatments--they are sometimes met with skepticism or worse, but I've always thought how strong those responses were depended largely on the tone taken by the original poster. Of course, there are exceptions--we can't really know what post is going to set one person off, or predict what direction a thread might take as the number of responses builds. If you care to point out any examples of what you think were overly negative responses to a success story, why don't you send those to my mailbox here at KA--I would be more than happy to take a look at them and "talk" to you about them through our mailboxes. You certainly don't have to do this--was just extending the invitation.

OK, I think I can't delay standing up to go to bed any longer. I hope that this post has given me a chance to explain my actions in greater detail, and, as the same time, made it very clear to you that I absolutely do respect your views as you present them here at KA. I am sorry if it seemed that my grumpiness and anger at another poster was directed at you in any way, as that was certainly never my intention.

I hope you have a great day,

Brad

Well said, as always Sue.

Brad

I was not going to reply to this as l agree totaly with Brad and the others the only thing I would add is that we all have a right to feel sorry for our selves now and again some of us have had AS for over 30 years as Brad said and we are crippled and in pain every day of our lives we all have positive thoughts if we didnt we wouldnt be here being positive and having laughter is important in showing your not being beaten by a crap Disease. When you find you can no longer pick up and cuddle the grandchildren you love so much you cant play with them as you would like when you find it difficult to be close with the wife or husband you love so much it hurts and some times you feel sorry for them and your self its called having a heart and caring about yourself and all your loved ones around you so sometimes I think we all have a right to feel sorry about the crap lives we have had. And as for saying you cant read the posts on here because people feel sorry for themselves and you dont like it then dont come on all the people on here are brilliant and support each other and care about each other you should have respect for these people that they want to help and support others despite going through terrible pain and suffering in there own lives. I dont know how bad you are but obviously your not severe. I would ask you to please think in future before posting about what you are saying words can be very harmfull and criticism of others who you cant possibly Know what they have been through or are going through is out of order.
Kevin

Brad,
I am really so sorry for what you are going through and had been going through for years now. And I am sorry that I brought back all the anger, anguish, pain and frustration that must have been part of you life for so long.
I meant so well, but it did not work out well. I am not overly sensitive and understand where you come from. I also understand that your anger was not specifically directed at me. Still, maybe I should have kept this to myself.
Hope you and all the others will, in some way, find the relief you are craving for.
Sleep well

No, see Ronel, the last thing I would want you to do is keep posts like that to yourself! I am of the very strong opinion that every post that doesn't violate our terms of service in some way adds something beneficial to KA. Sometimes that something might be rather tiny, but usually, it is as big and bright as the sun. As you can see from all the positive responses to your post--which far outnumber the negative, by the way, especially since none of the negative one are even remotely aimed at you--your post most definitely is one of those big, bright, blazing suns that shines the light of knowledge on all KA users. Please, please don't ever feel that ANY post you make here is out of line--if there's one thing this thread has proven, and that we see here every day, the more variety of viewpoints we get, the stronger this site becomes. Short of begging you to keep posting things like this--which I will do, trust me, as I have little or no shame whatsoever --I'm not sure how else I can convince you to go right on posting! Please? Pretty please with sugar on top? (See, I'm almost begging already!)

Brad

Hi Ronel
Please dont stop posting Its great your Brother seems to get help from hes beliefs and I hope it continues. Every one has a right to post there stories on here its up to the reader how they except it. As long as every one respects other peoples feelings when replying it should never be a problem.
Kevin

Great reply's everyone. We all have our own perspective of life. We all live life through our own lense. What is normal for one is bizarre to another. I am merely offering my perspective and opinion. But like they say opinions are like [*BLEEP*]. Everyone has one!!

One thing that stood out for me is people saying "oh your so cheery because your AS is mild". Nothing could be further from the truth. My brother is fused and crippled from this disease. I also would be fused and crippled if I was a normal AS patient. what I mean by that is what I call the "normal" patient who walks into the doctors office, does everythng the doctor says and that's it.
I take full responsiblility for my illness. I dont look at it like something I need to defeat. Just something I need to deal with in the best way possible. All I have to control is my attitude which in turn influences my disase. I refuse to see myself as a poor suffering person and dont assault others around me with this attitude. I have at times bad pain and fatigue, in fact quite frequently. But I am not fused anywhere due to my diligence.
Good luck to all. Keep posting good bad and indifferent. You just might not have me around much to read it!!