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

We'll be thinking about your family...

Lotsa love...

Sigrid, thank you so much it means the world to me...

You know I like the chocolate IV idea, I wonder if that might help my pain control...lol

Lisa

Chocolate is a plant food and does something with serotonins, right? And, the purer the dark chocolate is, the more, OK, here's the BIG word now, PHYTONUTRIENTS and Antioxidants it contains, right? And of course, fat gives one the feeling of being full, or satiated.

Yes, I'm in Lisa... my scientific findings concur with yours... Move over Enbrel and you other little biological guys-chocolate is the new biological...

Hi Lisa!

OK....so...you know...Jennifer Anniston?? Lol..I have to say I prefer blondes or redheads...but that's all superficial anyway...lol...

Hey, come on back to NYC, even if I don't work at the zoo, I'll take you and yours there for a tour! If anything, I can give cool tours of the zoo! Orch (Steve) even confirmed that from his kids, I was touched and am mailing him next...

The fact that you remember my "tripping on cat toy (mouse)" and breaking collar bone is just making my night...you ROCK....

I am also touched that you took the time to pray for someone to come into my life...I am not a big prayer person, but recognize it as a positive force, and appreciate it when directed towards me...thanks!!

Peace
Linc

Well, I'm guilty of reading but often not posting. I actually don't have time to even read everything. I usually look at the NSD forum first since I'm obsessed with food. Then I look at the Main forum where I only read the things that jump out at me. Sometimes, I read the first post in a thread -- but don't even finish it. If I really have some time, then I visit some of the other forums.

Sometimes, I figure that someone else will respond much more eloquently than I can --or will have more helpful information to share. Sometimes, I only have about 15 minutes to glance at KA before running off to one of the three graduate level courses I'm in right now, or going to yoga class, or doing my weekly 10 miles of aerobic walking with walking guru Leslie Sansone, or doing my share of the high school car pool, or attending one of the three worship services I attend weekly, or reading books from the likes of Brazilian liberation theologian Leonardo Boff, or writing an academic paper, or doing all the housekeeping and cooking (although my husband's great about doing after dinner clean-up), or taking my daughter to dance class, or working my five hours per week in the little job I have at school, or practicing my spiritual disciplines including two hours of Lectio Divina, or simply being around and taking with my kids . . . hmmmm . . . what am I forgetting . . . surely there's something . . .

Yes, there are times when I've felt that nobody pays attention to me here. One time, on one of those popular threads, the person who started it responded to every single person except me. The paranoid part of me was like, "Boo hoo, nobody likes me here." But the grown up part of me figures it was just an oversight -- no big deal.

I gain a lot from reading everyone's questions and responses . . . and when I have the time and energy, I try to contribute. But there is just no way that I can contribute frequently. Posting takes time -- especially if one wants to compose something thoughtful.

I'm sorry if I've contributed to the dearth of love around here, but believe me, my good thoughts are being sent to everyone here whether I post or not. I'm sending chocolate kisses to all of you.

Paula

Wow.

I am lately among those here not posting replies and words of comfort in any even handed or logical fashion. I hate to think that my failure to offer a word of encouragement here or there has made anyone feel poorly. I am glad to see that lots of love came your way once you shared your disappointment.

As for "excuses" for not replying I guess my life has been a bit too hectic lately and KickAS sometimes is just so big that I lose track of all the identities of folks. I guess at 40 I am a wee bit senile. Either that or a wee bit psychotic, because I never know who I will post a response to.

I think for the first 4 or so years here I always worried that someone might feel slighted if a post was overlooked so I posted too often--- found myself at the 'puter at odd hours ignoring that sleep thingy which is overrated when pain kicks in anyway.

Now I would like to reply to all but even at times when I want to I find myself not finding any appropriate things to say. Maybe you reminded me that even what I deem as a feeble seemingly recycled reply if heartfelt is still enough and needed.

I never know why folks reply to some thread and not to others. I have learnednot to post something that is in dire need of a reply on a Friday cuase it seems folks just don't peek in so much at that time. I have found it difficult to resist rplying to anything posted by Borther Lon so I suspect I am guilty as charged of favoring at least one ASKicker and I offer only that I am easily amused and more eaily confounded and Lon seems to leave me both amused and confounded.

I am derelict in my duty to se my Doc often enough so I don't ususalyy reply to posts that seek notes somparing what Doc's say, but mostly I'm sorry that you felt that the website had let you down and I'm sorry when anyone else feels that way too.

Lisa,
I'm soooooooooo sorry, I just got here after being absent for a few days. Goodness you have a few friends here and I would like to add my name to your list of friends. I know I have not always responed to all the posts that I should. But I do read most and try to keep everyone in my thoughts and prayers. I hope that you will stay. You are always very supportive of me and my family. I don't know what we would do without you and your kind words. It means so much to both Michelle and I. And again I'm truly sorry and will try much harder to be a better supporter here at KickAS.

Many hugs to you
Debora

Hi Lisa,

I'm also guilty of reading much and posting little. Doh!

As someone who doesn't suffer from AS I find it hard to know what to say sometimes in response to people's pleas for help. Sometimes the amount of pain on this main support board can be overwhelming and it's easier to respond to a frivolous post than a painful one even though it would be better if I replied to that one. All I can do is offer my sympathy and suggest trying what has worked for my husband. Sometimes I get my head bitten off for that but it's the only way I know how to help since I don't have AS myself and am only going by what Jon and my experience with AS has been.

But anyway, that's no excuse as it doesn't take much to say I'm thinking of you even if I don't have anything useful to contribute. I have done that on different occasions with various posts by people but it makes me feel so helpless!

So anyway, I'm thinking of you!
Love Chelsea xx

Hi Angel,

I tried to respond to this so many times. It just happened that you posted it during a time I was feeling more depressed and anxious than I ever have in my life. I just couldn't find the words. A lot of those that responded to this post have helped me at one time or another and I am very thankful. It's so hard to respond to everyone. I'm still getting used to the format of this site which at times can be overwhelming to someone upset. Perhaps someone can share advice on how they set up KA to find the most current posts or how they make it easier to navigate. Sometimes the search feature doesn't work - probably not because of the site, but the method I try to use. I search for posts that I know exist and come up empty handed. So then I usually view the posts of people I know responded and can sometimes find it that way. Also, I've noticed that sometimes when I go back to view my post, it will increase the number of those that viewed. I think part of that is because I've had a lot of hard drive problems lately and forget to set up KA so that it remembers me (I've noticed I lose browser settings, links and cookies when computer troubles arise. For example if I view the website not logged in, it affects the new messages etc. I show up as anonymous. I have missed some responses because of this. I also have noticed that I'm sometimes not even listed as online using the "whose online" link when I know that I'm on because I'm viewing it. Or I've wrote a lengthy response only to lose it somehow and go to bed in frustration. I constantly question the wording I use as to whether it offends. There are many times I end up not posting because I just can't get the words right. The internet is not perfect. But thanks for getting the site a bit more active, even if for the moment. If nothing else just to see that some of those we have been wondering about are still ok. Let's face it, some of us have got to know each other and are family. We worry about each other. I have to remind myself about that when I begin to feel some are "clicky." They just talk to those they are comfortable with and I can't blame them. I do it too when I don't have the time or am hurting too much. Meds also make it difficult sometimes. I wake up the next day and read my post and think, oh my gosh I can't believe I said that! I was given sleep meds in the ER last night. Why they just didn't give it to me to take myself, I don't know but they gave it to me then and watched me do it. I later found out from my boyfriend some of the things I did. He actually said I passed out a few times and I don't remember doing it. He said I started doing what I was doing once I woke up. My mind was on whatever it was before I passed out. It's very scary! Fortunately most of us understand what meds can do.

((Sharon)) I hope tonight is a better night for you. I think you worded it all well for most of us. I just can't keep up even reading all of the posts much less answering because I can't sit her that long but I am trying harder.

Blessings.
Possi