Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group ** Important KickAS NEWS UPDATE **

Mig,
Don't hate me - but take it down. This group is not supportive for me. Yesterday I logged on in tears after another failure at going to the Waikiki Aquarium. I've lost my career. I'm in pain all the time. And it is the last straw when I log on here for support and see the active conversations are all about "Big Pharm" and enemy doctors, suggestions that doctors should not be paid (e.g. work as slaves) unless they CURE the disease. Oscar Wilde said "Never attribute to conspiracy that which can by explained by stupidity and meanness". Yeah, every body's entitled to their opinion, but are these people F*** kidding or what? They think that the doctor knows what to do? Please. Get me off here.

Gosh Nancy, well of course I won't hate you and will take down your pic as you've requested.

I am sorry to hear that some of the threads have left you feeling unsupported, there are usually quite a mix to choose from. If your expectations were only to find like-minded posts and similar opinions throughout, then I do understand. Personally I love and respect my doctors, I have been fortunate and blessed with a great team. I only wish everyone were as lucky.

With respect,
mig

I agree with Mig!

Very sorry that Nancy hasn't been able to find the support she needed.

Hopefully your pain will reduce sometime soon!

I too have got a brilliant support team with my doctors, and in return, I'm amazed at the workload and responsibility that they take on.

As Mig says, this is quite a diverse group of people with lots of different views bantered around. Personally, I've learnt so much by being a member of this site, and it is a shame that Nancy may not stay here.

James

Hey Nancy,
I'm sorry you don't feel you have any support on here like mig and James said there are many different people and opinions on here.I don't agree with Doctors being run down all the time I also have a brilliant team of Doctors and nurses who give me all the help and support I need.I get very up tight sometimes as well with the medical profession getting knocked all the time by some people. Every one is entitled to their opinion even if we don't agree with it please dont leave the site there are many on here who will support you.

Kevin

I came here full of hope that there would be emotional support. I am emotionally very fragile right now.

Since I am a tenured professor at a medical school, I also thought I might be of specific use - I can look up things, for example. Not to be anyone's doctor, you understand, but to be informative.

If I was stronger I would be active, but I am at the point where I cannot leave my apartment for more than a few hours at a time. My husband left me, I am alone. I asked about the standing in lines because I can't do much of anything, I am in Honolulu and here, even to go to the Zoo (I'm a member) the concern about security is such (don't ask me why)that the gatekeeper looks at my membership card against my photo id and checks it carefully, while I am standing there dying. And that's as good as it gets, if they are interrupted I leave, cause I can't stand it anymore (literally).
I myself have been insulted and bullied by "health care providers" who mistreated me because they missed the diagnosis. I know that much of clinical research is in various ways distorted by the pharmaceutical industry. That's all besides the point. It is what it is and to know what it is you have to be well educated and willing to work to go through the literature.
But it's moot. I just don't have the energy to deal with a tough disrespectful audience.
I am frequently just holding on. This bashing and conspiracy theory stuff is not just opinions. It's a mob mentality. Emotion over intellect. I am sympathetic to why the authors feel that way, and I know it can feel good to express hostility, especially with others cheering you on-but there is no way I can discuss science and medicine here in any serious way. Hell, I feel like I should have hid the fact that I'm in the medical profession.
Again, I am not doing well. Can't afford to expose myself to more pain. I'm crying too much as it is.

I understand what you're saying and can see you need support and understanding of what you're going through which is what KA is supposed to be here for. I think that people lose that sometimes and use this as a debating centre not a support site.I can relate to your pain and suffering I've been there like many others I've been suffering for 48 years with this and had times when I couldn't go out because of pain.I spent 20 years alone after being divorced from my first wife and brought my daughter up on my own so I've felt the loneliness and depression losing my job in engineering 15 years ago and learning to live a different life. I'm lucky I met my now wife 7 years ago and we have been married 5 years this year and she is very understanding and supportive of what I go through.But I say again you will get support and understanding on here stick it out it will be worth it just look in if it helps and read the posts from others and you will see there are many like you.

Kevin

please do stay. we do want you here and do appreciate your expertise and unique perspective. i think you can help us, i hope we can help you in return.

i'm so sorry about your job and your husband. i fear losing my job. i am thankful for my husband every day.

i understand being fragile. this past fall i was especially fragile and so focussed on the people that were kind to me. just avoid the posts that upset you.

Hello Bleecker

I'm so sorry to hear what a struggle you are having at the moment - with your AS and your personal life. What a lot you have to deal with at the moment. And how reading some negative comments on here have made you feel worse.

I am new here too and am still getting to "know" people. some posts and comments upset a lot of people, don't think you are alone there. Hopefully negative and inflammatory comments are in the minority, but do happen.

I hope you decide to stay, because there are so many people who would love to help and support you in any way they can.

Take care

I also hope you'll stay Nancy. When individuals on KA face challenging situations and need emotional support, it pours out, often dozens of pages of ongoing support and kindness. Many here can attest to that.

I have learned to mostly ignore threads or posts that press my buttons, as it were.

Nancy

Please stay and give our family a chance. I personally would value your input. I think your knowledge here would be so valuable. At one time I left here with "this is my last post" because I had felt the same way about support. I was so emotionally fragile and in so much pain.

I thought no one cared in my life and I expected to come here and somehow the people here could take away my pain. I understand how it is to be in pain and "trying to keep all the balls in the air" only to have them drop to your feet over and over again. I have done some contemplating and have come to the realization that I have to "reveal myself" more to get the support I need when I need it. This part has been really hard for me since I am so worried about how people feel about me.

It is harder to develop relationships over the internet than in person. Even though the internet is fast it is also slow in the fact that we are not all here at the same time conversing face to face to respond to each other.


My wife is a nurse and my doctor is also a personal friend which makes hearing about them as less then compassionate or money orientated only, disturbing. People can have opposing viewpoints, I tend not to engage in threads that are negative towards people in the health care industry or view the drug companies as "big business".

Gee how much money could be made if they found a cure??? Research is being done all the time with that goal in mind. It's too bad that some people think this can be done without research and development. Money is needed to do that.


I am so sorry you are going through a rough time right now. The physical and mental challenges can be daunting.

Please let us help you "pick up the balls" when they fall.