I love this board, I come to it for advise! I don't know a soul who understands what I'm going through. I hope you all don't stop giving advise. =( I think y'all are fun and very informative. You tell me things my doctor never tells me.
does it really matter about this research? I just gave advice on orencia, it felt great to help someone. Is someone pretending to have RA? I myself don't care if someone is getting info for research. Wouldn't it be a good thing that someone is writing about RA. Or are they getting info for profit, using the advise as a self help book. Oooooooooooo I can see in that case, that is very bad.

I'm really tired about people worrying about others gathering information for papers, research, etc. , I come here to get information, advice, encouragement, and friendship, and this is what I try and bring to the table. If you or anyone else is worried about these things then I suggest you reconsider the reason you are on this discussion board. This is nothing against you personally, but I continue to hear this BS about "research" etc. Who cares?? Sorry, just me. If it has come to this then I will just move on and disappear. Charlie

we cant stop being who we are. Just choose your friends wisely and enjoy the true friends you have

On the other side, I'd like to register that I am happy to share (e.g. surveys etc) as long as the process is formal and the research legitimate and verifiable.

Personally, I could care less who does what with the words I tap out on the screen of this board. For me, the big picture here is giving and recieving all the help, laughter, and support I can. Anything else makes no matter to me. So long as it isn't important personal information they're helping themselves to. So I say keep on trucking, and please, for the love of all that is green, let's not worry any more over it. This topic has a way of taking over the board, and each time I see it, I can't help but wonder why it's being drudged back up.

Love you all! How's about we stick to what this group is about?
Take care and God bless!
-Tanya N

Please, let's all stick to what this group is about - exchanging information and advice, supporting and encouraging each other and being friendly.

Tanya, I agree with every word you said. Please, let's just move on.

Hugs to all.

You said it!

And when she tries to get us working Against each other - IGNORE IT.

I have Always been fine with and actually WISHED a legitimate researcher would come here and get OUR information about RA! It could Help! What she is doing is garbage. I bought it just to make sure my real name or even profile name wasn't being used. I am happy to answer any questions anyone might have about it, and let you borrow it to read as well. The "paper" it's self if Nothing. It is not even accurate! I was HERE when all that went down, and *I* couldn't even match up the fake names to people the story tells about. It is not an accurate telling.

What bugs me most is that she feels this stalker need to keep coming here and pitting us against each other .... most likely to write some More about what she thinks is human psychology or something. Who knows.

Sorry, I got off topic. I love this post and agree with you 100000%!!!

I apologize for my outburst yesterday. I would love to blame it on the 100 mg of prednisone I had to have for my Rituxan infusion, and perhaps that resulted in lack of emotional control, but, in fact, I did not mean to scare and hurt people on this board.

I wish someone would do some research into our suffering, and especially change the name of RA to something that doesn't resemble someone's little finger problems in their grandmother.

Whoa! 100mg of pred??? How did you keep from blasting away!?? You didn't do anything wrong. We're free to say whatever is on our minds. No sorry's needed in my opinion.

Charlie, sorry you're tired about this. But to answer your question, "Who Cares", I DO. Again let me be clear, NOT about the paper(s), or "research" (flimsy as it was). I care about the Deception. I care about how she managed to make people who are good friends fight with each other. THAT is what I care about.

In fact, I made a comment, taking responsibility for my paranoia, which was taken by many as an accusation that AnnaOz was her. NOT what I said. My anger and paranoia pushed me into a place where I could Understand what Pearl said about the AnnaOz post. Because it brought up religion and people started getting testy again - I could see how Pearl would make that comment. And the bad place Celia's work put me in made me Wonder .... about a few profiles I've known a long time.

It is very sad that I think Anna thought I was saying she was Celia too. I SAID she is not, and hope I never find out she is. But that wasn't good enough. People thought I said she was her and that was that.

I'm happy to get back together with bizziemom again after all that crap 3 years ago Celia put us through.

So anyway Charlie, I CARE. Please don't leave because we like you here and hope you stay. Just ignore me and all this "drama" (some call it). I am not prone to drama. But what she did here and appears to continue doing is plain WRONG. I'm not gonna shut up about it till I'm convinced she's gone from here. Even then I might still remind people to be careful. I know I will always be on My Guard from now on.

I don't object to people using my posts for research EXCEPT that with the American Psychological Association, it would be considered unethical unless they disclose themselves. It sometimes seems to me that there is an elitism among some of the people who post here...an attitude of some being more authentically disabled than others. That is not what this forum is for. I follow it for advice and encouragement and I am not part of the bias that sometimes shows up here.

#11 - " elitism among some of the people who post here" about being disabled? I'm thick I guess because I've not seen that. I wonder if you could point us to some examples (?) that would help a lot.

Great point about being considered unethical. So if Celia never told us who she was and what she was doing, her "work" would be considered unethical? I think I agree.

By bias, are we still talking about the elitism?

Thanks!

Oh dear - kept away from this site for a while because of the choppy water...still with us. I dont have a closed profile so anyone can message me but for those who do have one (whom I checked to see if I could message) I will just put it here that I met Anna Oz on a trip to Sydney and she is lovely. Has had awful struggle with RA while trying to bring up young ones.. And a real possibility this nasty disease was triggered by a vaccination. We all know how life changing this disease can be!
There are cheats, posers and free-loaders everywhere in life so not surprising some here. fWe each have to come to terms with that in best way for each of us -some by being private, some by just reading and not posting, some by being sensitive to what we write.... Whatever works on a personal level.

Angela... just wondering why you had to have the pred before your infusion? Goodness, you must have been "ready to party" yesterday... hope today is calmer for you :-)

It is a very dangerous drug - Rituxan. It helps minimize the shock or damage. I also have to take Bendryl and Tylenol and I still had a severe headache and she had to pull back on the rate of the infusion.

I had a wonderful evening, walking the mall, which I can never do in real RA life. Even the nerve pain in my reconstruction foot was gone. I could clench my fists. But I could not sleep most of the night, and today I feel like someone hit me with a baseball bat. The nurse told me it would happen, I just forgot how much. So I'm wasting time here on DS instead of studying for a big final on World Religions.

And yes, Camba, Anna Oz was very real, and very hurt. But it never would have come off that way if the group had not been in a turmoil because of the betrayal of Kineret. Anna was a wonderful person, and she was another indirectly hurt by this poser.