Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group With my Heart in my Hand

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Hello and welcome to KickAS, the best source of support and information for those suffering from Ankylosing Spondylitis, the associated spondyloarthropathies, Rheumatoid Arthritis and related ailments.

Our mandate is to provide a safe, supportive place for individuals and their loved ones to share with, and learn from, the experience of others coping with chronic inflammatory arthritis.

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All KickAS members have the right to expect:

a) A safe and supportive environment where sufferers and their loved ones can share with - and learn from - the experiences of others coping with Ankylosing Spondylitis and other rheumatological conditions.

OK folks, here’s the thing, I’m dealing with enough strife and hurt in my life right now and look to KA as a haven. I can come here and get support, no matter what the problem, and give support, no matter who needs it or what the problem is. KA is my lifeline, as it is for so many of us. Because of my personal problems right now, I haven’t been paying as much attention when I’m here, to each and every discussion that’s going on, the way I usually do. Don’t have the brain-power, frankly, so I missed a few things. Until this week….

This week, I saw a post from Wendy saying she was going to leave because someone made her feel that because she doesn’t have AS, she doesn’t belong here (or some such fool thing).

I found out that Kevin has left, due to something said in the discussion about Sue’s feet. So, I go to said discussion and find out that, apparently, we are not all created equal here. Indeed, one member seems to think that KA is only about AS … and I infer from the remark made that this member is under the impression that feet have nothing to do with AS. Not only that, but Sue was put down for talking about something that is causing pain because it might have been self-inflicted … which it wasn’t. And even if it were, when it comes down to it, who the hell cares????!!!! She still has the right to talk about it and get support.

What’s going on around here? We’re all in pain. My pain might not be as bad as another’s, but then that person’s might not be as bad as the next. It’s all pain, whether debilitating in nature or irritating in nature. I can dance flamenco (although my rheumy is expressing concern over the effect on my left foot). Other folk can ski. Too many can do neither. I asked this question yesterday and deleted the post because I thought I was being hyper-sensitive, but after reading the foot thread, I don’t think I was. My remarks were merely misplaced. I’m going to ask my question here:

When did KA become about the severely impacted, AS-specific elite? Last I heard, it was for all of us, regardless of ability, specific Spondy, specific form of arthritis, pain levels, inflammation levels, where the pain and inflammation are, and you name it of the pettiness I’ve read this week.

I suppose next all the ‘pure’ ASers will want their own area, where they won’t have to be bothered with someone who has UsPA or PsA, or, gasp, a whole mish mash of autoimmune diseases. Then we’ll have to give the UsPAs their own area. Oh and people with multiple diagnoses will have to have their own area, because they aren’t ‘pure’ ASers. I guess inside each area, we’ll have to put specific ones. And if you came here initially thinking you had AS, only to find out it was something else ... well, we won't even go there. If you have trouble with your feet, well don’t bother going into the area for ASers with only spinal involvement. They don’t want to be bothered with that. If you respond to the diet, you’d better not post in the area for people who don’t. And don’t even think about posting in the sports area if you only watch sports and don’t participate.

I am, of course, being extremely snide and sarcastic with that last paragraph. Just in case I need to put a qualifier in there for someone who might actually be taking those suggestions seriously.

Come on people, when did this become a competition? My pain is worse than your pain … neener neener neener. My pain’s only in my spine … neener neener neener. My pain is pure AS … neener neener neener. Sounds to me like we’re turning into that other site where they won’t let anyone post about NSD. We’ve all expressed pretty strong opinions about that. Funny how we’re letting it happen here in a different way.

As was pointed out in Sue’s feet thread (sorry Sue to keep bringing it up), if you don’t want to hear what another member has to say, feel free to use the ignore function of KA. If you can’t be kind, don’t respond to someone’s message. We can disagree all we want. We often do. But what’s happened here lately goes so far beyond that as to be disgusting. And hurtful. Ultimately, it hurts all of us, but right now, there are several KA members who have been specifically hurt by it. And that’s just plain wrong.

Just had to put that out there. Let what comes, come.

Love and hugs,

Thank you so much for posting this, Kat. Well said.

Last weekend, I visited my sister who recently injured her shoulder causing her a moderate about of pain and lack of function. Did I say to her, "Big whoop! One shoulder. Quit whining. I have problems with both shoulders, both elbows, both wrists, both hands, my neck, both hips, my SI... (I could go on and on, but you get the idea.)"

I did not say that. I expressed concern about her shoulder and empathized and let it go at that. Her shoulder is genuinely distressing to her and rightly so.

That's not to say that a part of me didn't want to comment in a dismissive way. I'm human. Part of me is angry about what is happening to me and jealous of people who are relatively healthy. I have to be constantly vigilant to be keep myself from responding to people from that part of myself, the part that would compare my pain to others and tell them they have nothing wrong with them.

Nor does the fact that my sister brought up her shoulder to me diminish my very real pain. It's not a competition. Pain is pain. Lack of function is lack of function. Everyone carries the burden they carry.

Moreover, it is imporant to remember: YOU NEVER KNOW THE WHOLE STORY. People post about their challenges at kickas, but there is always more than what they are saying. Perhaps that person is on the verge of a divorce or was abused as a child or is about to lose her health insurance.

Be gentle. Be compassionate. You never know what burdens people are carrying and what hurt you can cause someone.

Karen

Good post

This is such a varied monster that can impact almost any part of the body and everyones tolerance for pain is so very different.

You simply can't belittle anyones discomfort until you have walked a mile in their moccasins.

Kat, Karen, Drizzit - I was moved by each one's comments. I hear from each comment compassion, love, and understanding. To all my KickAS family, I love you very much. You help me through depression, and just by being there as my family, and friends.

Hugs to all
Kisses from Makaylah

Gerri

Very interesting post Kat...however, I think you are not seeing the whole picture on this though, this has been like a tumor growing larger and larger these last few years and it's become so big that it can no longer be ignored, we've got a LITTLE group that is making BIG trouble here with 'troll type' behavior and it seems they have been quite successful in their endeavors, just take a look at our once calm and peaceful community, it's turned into a three-ringed circus, it's out of control and sinking fast...no I don't think us ASers want our own space nor do we feel superior or bias toward non-Asers...really,how could I POSSIBLY feel that way! Both of my sisters have MS, Mom had Lupus and my beautiful, precious daughters both have been DXed with Fibro and RA with suspected SLE, how could someone say that I am biased against non-ASers and have no compassion, symapthy and empathy for them!!! That's ABSURD!!!...AND what is this 'Pure AS-specific elitist' business'... The problem is not about what you've written, that's not the way this has all gone down...a few ASers have been targeted because they've continued to protest when someone puts false or misleading info out here about AS and they've been VERY nasty and rude when they are corrected about posting false information about AS...I don't profess to know about RA, because I don't have RA, so it would be offensive if I were to try and tell Wendy about HER pain and what she has to cope with while she's fighting HER disease, that would be ridiculous and incredibly rude of me as well as DISRESPECTFUL, as I have absolutely NO business telling anyone about THEIR disease...and two of the very same people you're defending here told me and I quote..."I'm glad you can drive 4 hours to see your rheumy, I WOULDN'T be able to do it!!!" ...as if to minimize the extent or impact my disease has on me and there have been several other rude and snide remarks...I certainly did not see you coming to my rescue or anyone elses during these last few years whilst these people have been rude, nasty and disrespectful to not only myself but others members of OUR community...if you're going to stand here and defend this, get the whole story, both sides, do your homework on this because you obviously have not seen all the little DIGS this very small group has put to all of us, they've attacked Wendy, Mig, Kevin, Molly, Trudi, myself, etc. since they arrived...and now you are telling us that we cannot speak for ourselves? I think you need to get your facts straight, this has not been unprovoked...this is EVERYONE'S KA...ALL OF US HAVE A RIGHT TO BE HERE, NO EXCEPTIONS BUT...IF SOMEONE HAS UsPa, THEY NEED TO TALK ABOUT THAT, DON'T TALK ABOUT AS, RA, MS...THINGS YOU KNOW NOTHING ABOUT!!! DON'T TRY TO TELL ME ABOUT MY DISEASE!! It's rude and offensive and I WILL say something EVERY time, I'm done with it...

Michelle, you've obviously taken my comments personally. I did not, however, direct them at you, but to the community at large. I am well aware that there have been problems, and that what I've seen this week is the culmination of ongoing issues. That is not my point.

Pain is pain is pain is pain ... no matter what disease it comes from. And we don't all have the same experience, of pain or diseases, because we are all different and affected differently. It's obvious to me that you don't get the point. You are tied up in your world of pain. I'm sorry for that. But I will not apologize for saying what I've said. You're damned straight I am standing up for my community.

With respect.

no, I didn't take it personally Kat, not at all and I know you come from a good place...I know you, my friend...my point was that I think you're defending someone(out of the good of your pure heart) that has you fooled, the PMS that you suggest were attempted by several members here and if I'm not mistaken Admin has weighed in and asked this person very nicely to refrain repeatedly, in the open forum...but to absolutely no avail, this has been going on, you just haven't been 'targeted yet' because you haven't contradicted any of them yet...I suggest that you pull ALL of this person's posts up and see for yourself the nasty little remarks that began immediately upon arrival, it's been going on for 3 YEARS...have a look for yourself hon, you're defending the perp not the vic...that was my point, big hugs, I'm just exhausted with all of this nonsense...and you're damned straight that I will stand up for my friends too...you should know that, you've seen me do it in person...

Well, Michelle, since I mentioned several people by name and alluded to one or two others, and I've obviously not seen what you have, I cannot and will not comment about any specific person. That is not what this post is about, regardless.

Thank you for clarifying. I do appreciate it.

We ASers are entitled to that SAFE ENVIRONMENT too!!! Look, I'm on 2 different immuno-suppressants(chemo drugs) and 19 other meds, I'm sick and I feel like it's probably going to kill me, as my kidneys are crashing again, I've just come home from the hospital and I missed my KA family and I was in need of a little support but I came here and saw all of this trash...I'm out of here...thanks KAT...I really appreciate your compassion...you are COLD AS ICE!!

hi i am new to this site have had as for 13 years.have done well till the last two years.and now going on to humira.work out side 7 days a week but getting hard.need to have asleep at lunch