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

Sweetie, I hit the ignore button over a year ago...though I have made some friends here, this is not about friendship for me...this is about getting help managing the disease that is destroying my body and my life but every time I come here, there's B.S. and many people have been bullied and have left...I have been in the hospital for a WEEK!!!! I have not been on here to read all of this crap..we went to the camp, I got sick...straight to the hospital in Shreveport, where I stayed for the past week...I just would like to come here ands NOT see all of this nonsense...and it's hard to ignore when it's brought to your doorstep ...you've dealt with that here with a different group and you reacted the same way...because you stand up for what you believe in...am I not allowed to do the same?!...Or is that right expressly reserved for you?

This is really where it began for me...comments like this were posted, "I think my disease doesn't rule my life because I don't LET it!" ...as if to say that person is superior to us and we're just weak idiots that LET Ankylosing Spondylitis ravage our lives...very insulting! I'm in very advanced stages of AS and I don't need to validate that to anyone but I will not let someone come here and insult us...period! ESPECIALLY when they have NO IDEA of what they're talking about...

I have seen this before. If you go to any forum, you will find people who are nice, kind and supporting, some who give out lots of information and then there are those who get snippy. Some people take an innocent comment and blow it up all out of proportion. Others just seem to jump on every thing others post.

Most people here are here because they or a loved on is in pain. That is what is most important. It doesn't make any difference if you have AS, RA or one of many inflammatory conditions that fit into this family.

We can choose to ignore these comments, to post a PM to someone who makes a snippy comment or to wade into the fight. I don't know what is best. I don't like to sit by and see someone being bullied.

It breaks my heart when someone leaves because of a comment that someone makes. Personally, I am too stubborn to let some bully chase me away.

Michelle, I am so sorry that you are feeling so bad. So many at KA are hurting and needing the love and support that the majority of our KA people give. (((Michelle))) Feel better soon.

No it isn't reserved for just me..I guess I am just so out of the loop that I don't know who this horrid little group is (and I thought I had pissed everyone off..lol) all I can say sweetheart is if you aren't getting the help or results you want or need then dont put youself thru it...pick the members you treasure and deal with them on FB.

You are right if you just got out of the hospital then you dont need to put yourself thru this...see I am sick too BUT i still get enough positive out of Kick to come..if I felt attacked or felt like there was a group trying to out me then I would just leave even here isnt worth your own family or your health or your sanity.

If you have spoke your peace and no one is helping then what are your choices? If you feel your are being attacked then why stay, if you are really sick then I would think you would want to focus on that not all the immaturity that goes on here...Im just sayin.

Amen Girl!

To amrh, I apologize to you. This should not have been your first intro to KA.

To anyone wanting to contribute further, I quoted part of the rights and responsiblities in my initial post. Please remember them. This is a heated issue and could go even more downhill. It clearly, however, needs to be discussed because there are obviously hurt feelings all over this. Frankly, I don't want things to continue as they have been here at KA, with veiled (and not-so-veiled) remarks against this, that or the other member, with factions forming and 'secret societies' based on who really does or doesn't have AS.

This issue has been underscoring everything for a long time, sometimes openly, sometimes hidden. It needs to be resolved. Openly. That means talking. Openly.

So, I ask, before you come on and blame others, or name names, or vent your spleen, think twice about your wording. We are all entitled to the same rights here at KA, but we must also be aware of our responsibilities.

Warm hugs,

I NEVER said that I'm not getting ANYTHING out of KA!!...but apparently, I'm not welcome, so I'll leave but this wasn't even about ME...I was standing up for the people that have been run off...WAKE UP!!!!

You knew EXACTLY what this would provoke when you started this thread...you even say that in your opening post...

Let what comes, come...to quote you...

Michelle, I knew it would probably get some blasting, yes, but what's coming from you was not what I expected.

You are obviously in a lot of pain and given what you've gone through over the past week, that's understandable. But you are taking that out on me, on Lisa, on anyone who disagrees with you right now. I have compassion for your situation, Michelle, believe it or not. Always have had. Doesn't give you the right to take your pain and anger out on people here.

If you really want to leave, then do so. But don't try to convince anyone you are doing it for any reason but yourself. If you want to stay, then do so. Again, don't try to convince anyone you are doing it for any reason but yourself. It's your choice.

With respect.

REALLY!!! When YOU KNOW that both of my girls have Fibro, RA and suspected SLE on top of all that for Erica...both sisters with MS, Mom died of SLE, Dad died with AS and you think I would go to the exclusive ASer only club as you put it? I have EVERY single one of these dreaded diseases in MY family and you think I would exclude my OWN?!!! That's INSANE!!