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

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

Lisa,
If it any consolation i just want to say that I love you and I totally appreciate all the support you have givin to me and my family especially through last year. i would be saddened to see you go.
I do understand where you are coming from though, at times I feel like you have to be the "popular" one to get any response or you have to post something such as you did.
Lisa I am here for you and I have kept you in my prayers, I wouldn't want to loose your support.
Lots of love and hugs comming your way!
~Michelle

Michelle,

Bless your precious little heart!

That is all I am asking for...just hearing your words ANYONES words can totally change how I view my day.

You have always been so sweet to answer, and I have always kept you and your family in my thoughts and prayers...goodness knows you have needed them this past year. I just felt like if you knew you had people in your corner, how could you lose.

My son has been going thru some problems at school, the usual petty picked on stuff and I have taught him to say...YOUR words can not hurt me....I am unbeatable and I am undefeatable. I have not been feeling like that lately. Sometimes someones LACK of words can hurt just as much.

Thank you so much for having the kindness to respond,

Lisa

Lisa,

I am sorry, I have not been around much lately. I have been sick myself and have had several family issues over the last few months.

I, for one,see your posts and KNOW how positive your positive your posts are, typically, so this one caught me off-guard. As I said, I have not been around much lately so PLEASE tell me what it is that is bothering you!!!! You can post it here or PM me. Either way, I will listen and see if we can find a solution. I HATE seeing you unhappy!!

Please let me know!
Holly

Dear Lisa,

First of all... I am very very very very (infinity)..... sorry!!!! You know i'm one of the culprits you are talkng about, who has all the time to read good posts and never reply. I remember how you have replied to most of my post and with such love.... I profusely apologise. I think i am a lazy poster, and also have very limited access to the internet in the day.

Second of all.... Here goes all my love, kisses and hugs to you.... Whenever i have looked up to this site for support with a post, i have found warm, almost endearing reply. Your efforts in providing support to people like me is ANGEL LIKE. You are my AngelMom.

Please don't get disappointed anymore (although its quite fair on your part) I love you and as i write this post, pray for you. You're already blessed....

I LOVE YA...

Ankush

Hi Miss Holly,

I KNOW how awful things have been for you, and you NEVER stay far from my thoughts.

Thank you for responding...It makes me feel SOOOO good!

I will talk to you, but I will pm you later, I am so tired and in so much pain.

Me and my husband went to see Glory Road and I cried ALL thru that movie.

I didn't think I could cry anymore, and then I read Ankush's response and just started bawling....what a tear jerker response...I dont believe it...I have never thought one bad thing about him, but I am starting to feel the love...lol

Lisa

angelmom, I have sooo appreciated your words of encouragement and want to thank you for them.. I think you were one of the first ones to ever respond to my very nervous first posts I'm sorry that i haven't been able to answer you...our hospital census went up and I have been working so much that i just come home and eat and sleep so i haven't even had opportunity to go thru and look at anyones posts til late yesterday evening. I don't know what's been going on with you but I will have a chance to go thru some posts finally and see what's going on with eveyone. But, sorry that you felt left out, thats a nasty feeling and please know that i actually have great support for you and on occasion worry about you and marvel at how you get by with having the responsibilities that you do and such complications with your illness. You are still loved and i would still like an opportunity to hear what is happening in your life. Much love and appreciation to you mom.. Amy

Ankush!!!! You Sweet, Sweet Man,

You are SO not being picked out! You never entered my mind.

Your words were SO kind, just what I needed to hear right now..

That is all I wanted was to let others know how profound this web site is to some, to some it is their life line. Alot of us dont have family, or alot of friends and ALOT of people dont have the support of family and friends (I am lucky there) but they use this forum for courage and to be uplifted and to be treated with dignity when family members or drs. dont.

I have my Dad and my husband and a few friends that support me, but when I lost my Mom in 2003 I have been devastated. There have been woman on here that have not known, but have been like a surrogate Mom to me or the sister I have never had.

Thank you so much for taking the time and making this girl feel so much better!

You are a treasure!

Lisa

Just thinking about you

Lisa,
I'm sorry you have felt this way. I am a big one at reading posts and thinking "i'm so tired, I'll come back on tomorrow and reply, so i can give it more time with a better response" and next thing ya know.... over half the time, I can't make it back online for awhile, then get caught up in that cycle. In fact, almost decided to think more on a response to this post, then come on tomorrow and reply. BUT then remembered, have to drive Noah up the mountain to work in the early morning, clean house...etc..etc.. and would really risk not being able to reply at all.
One thing I have noticed over the last few years with KickAS, is that it goes in waves. And weekends are notoriously slow in getting replies. (atleast they used to be lol)

I'm not trying to make excuses, and in no way want to discount your feelings. Its just one thing I have noticed here is some things get replied to more than others. And there are sometimes, especially when one is hurting, that alot of people just don't know what to say. Its easier when you are face to face with someone, to just simply say "I'm sorry, I wish there were something I could do" But when you are behind a monitor, looking at a screen and just don't know what to say to help, its just easier to click on to the next. Maybe not better, but easier. I honestly don't think it is because people don't care.

I do hope that things in your life are getting better.

take care,
Pam

Amy Sweetheart!

Thank you so much for replying...

I dont want ANYONE in ANYWAY to think that I am trying to single any 1 person or 5 people out.

I know that EVERYONE here has a life, some good and some not so good, that is why I try when someone needs uplifting to be there. I may not know anything about someones situation and I have said that many times, I cant relate or I havent gone thru that, but I just want to welcome you or let you know that you are not alone. I just always have felt like if I dont respond and the next person doesnt respond...then who WILL respond.

I think as a forum, I realize not everyone can answer everyones post, but when you see a special need or a special request...I think each of us should make it a point to RESPOND even if its just hey I HEAR YOU! I am thinking about you, you can pm me.If you dont want to get involved just say your in my thoughts.

Can you imagine if ANY of us posted something, especially if we were down or having problems be able to get on here and check and be blown away when you are down and out or feel like you just cant go on..you have even 15 or 20 people telling you that I am here for you, you are not alone, I do care...that is all I am asking...myself included.

That can give someone strength to go on, make it thru another awful day...we do not understand what power we have...and I know there has to be others that have felt like me, they get on and see that 250 have read your post and like 3 or 4 have responded, that just crushes you ( ok, I know I am a little sensitive right now..lol)

I just know that I DO NOT post unless it is something close to my heart or something that I REALLY value EVERYONES opinion here, and when no one or only a couple of people respond I feel like if no one else thinks I am not worth it, then I must not be worth it.

Ok, I am going to bed now

Lisa