Heya

I can't remeber what post goes where... so thought I'd reply to what Ada said a couple of days ago (I think) about replying to people's emails - especially newbies.

I do find it very hard to reply to newbie posts because of my RSD - I don't want to scare people by going "and if you are unlucky you will turn in to me". I personally don't feel it's something that I should subject somebody to.. it's bad enough feeling horrendous with this disease and getting newly diagnosed with it without...

"Hi, I'm Frogga, I'm 21 and at university. I have had RSD for 5 years since a fall when I was 16. It is now full body and I have severe full body dystonia and other neurological damage from the RSD. I have been in a wheelchair for the last 4 years and I need 24 hour care and help with everything and I am turning in to a human pretzel...........

..............but don't worry. You'll be fine!"

just feels a bit mean sometimes!! it's why I don't tend to get to know newbies till they settle in... I don't want to trivialise what others are experiencing and I really do try not to do this on the forum - as everyones pain/ disability is unique to themselves - but I know from experience that sometimes posts can become really personal - or at least feel it!! (like - well, you can't POSSIBLY have the same amount of pain as me because you can walk etc - which is total rubbish).

I guess I just don't want to be scary!

Love

Froggsy xxxxxxxxxxxxxx

Don't want to start anything.

Ada

Hey Ada

You have been so lucky with your doctor - unfortunatly many of us are not that lucky. Also, I am apparently one of a small percentage of patients that the doctors can do nothing for apart from palliative care. My RSD docs believe any intervention I have will make me worse - we are still discussing DBS but no decisions yet.

I just remember how scared I was when I was diagnosed - and I remeber the second girl I spoke to after I developed it was in a wheelchair. and that scared me so much!!! I didn't realise it could do that to people... until during a dreadful flare my legs died.

I just feel rude if I tell them whats wrong with me, rude if I answer and don't mention it at all and rude if I answer then and just dont mntion anything about me...

the politics of a website!! LOL

Froggsy xxxxxxxx

Hi Frogga and Ada,

Frogga, I completely see what you mean; you're fine, though. You do it all just right. There is a wide variation in the severity of RSD as presented on the forum, and (my heart breaks) you're just on one end of the spectrum. I'm on the other.

Because I'm on the other I've had a few posts sent to me along the lines of "well, if you can work, you can't have RSD". If only. And as if it doesn't take an enormous amount of effort to physically perform; frankly, if I didn't have to work for money I'd have to work for the love of it anyway, even if it meant becoming an ear artist, LOL.

But anyone thinking you or I shouldn't be here because you're too afflicted and I'm not afflicted enough needs to find a forum where everything is censored, watered-down and everything in the garden is rosy. And if that's what a person needs, so be it, there are plenty more other forums like that.

But this one isn't like that.

Ada, you've just edited your post since I put this up, but I'm going to let this stand. I thought your post was interesting, not at all "starting anything" - I take the point that you don't like any kind of confrontation, none of us do if it's uncalled-for or unwarrantedly aggressive.

But discussion and disagreement (not to be confused with confrontational aggression) are the hallmark of a good, healthy forum. Would you want a forum in which people can come on and post anything they like - not just abusive things, but false, misleading and ultimately damaging - and have the post readers feel that no-one can reply, protest or offer countering information, honestly? Without honesty, it all becomes meaningless. You also instantly open the door to trolls.

In addition, when there is intellectual discussion, for example about research, you will get disagreements. Universities, btw, are the bitchiest, most gossip-ridden places in the universe, outside of Hollywood, LOL.

It's all about the exchange of ideas and we all have different ideas, hallellujah!! But through healthy, active and yes, sometimes heated, verbal interaction comes understanding and hopefully concensus. A strong healthy forum can deal with this. We should be cheering on the dual and pitching in with more ideas if we can, not hiding behind sofas.

Once you start down the "lets all be nice to each other all the time" road, you begin a process of dishonesty, or guarded honesty where people think they can't say what they really feel - and at the end of that road lies serious mistrust because you can tell, even on a forum, when people are sincere. I don't want a forum like that (and I *will* argue with you about that if it's necessary LOL!). Keeps the blood moving!

And even if you succeeded in getting all the present forum members to mind their Ps and Qs, new people come in all the time who don't know the unwritten rules and that shoots that one down.

I think a forum only works well when you begin from a standpoint of "we're all human, we have differences and flaws and we all have our own ideas and mannerisms which occasionally conflict with other people's". But as a human being we can adapt, help others and interact in as civilised a manner as possible. I believe that most people on this forum make a serious effort to be civilised and helpful whenever they can and you can't ask for more than that.

Just another point, Ada, but it's important. Because the pages in the forum are so short (I have tried hard to get them lengthened to include more posts, to no avail) new posts become old posts in a day or two and drop off the page, and no-one has the time to go to page 2 very often...I think we are all very good at trying to ensure that posts get answered, some people go out of their way to do so, and I thank them for this.

But occasionally there will be a lull in members visiting, or a surge, and either way a post might drop off the page unnoticed or people just don't have the time, or it needs research, or..for whatever reason, that'll happen and a post won't get answered.

If that happens, and if you noticed it, the best thing to do is bump it back up again, it's that simple.

Anyway, I think we all do try our level best and if there's a shortfall, it's by accident not design. And in general we do take the rough with the smooth (and that could physically mean you and me, Frogga - you being the smooth, of course ) in a rather impressive way.

OK. I'm done!
all the best!

Frogga,
What you have gone thru is amazing. Meeting us newcomers is fine. You will not scare us off. In fact, since having all these problems, one way I put things in perspective is to hear from other people. Yes, everyones' pain is their pain, but, for me, it make me realize that the world doesn't revolve around me, there are others that are suffering more than me. So don't feel that you should hide anything about yourself. You are a special person and have a lot to offer those of us who are just getting here.
Mary

{{{{frogga}}}}} very gentle hugs.

i know it doesn't solve anything...but if you don't feel it is an invasion of your privacy, you can put a brief medical bio on your signature line or on your profile. or just refer to the introduction thread.

i hope all understand the severe pain rsd causes and shouldn't expect everyone to reply to all the posts. for one thing, this is an awesome active group. growing daily. you would have to sit and reply all day just to keep up. i think the newbies are amazed at how fast they get replies.

frogga, you are an inspiration.

We can only each be ourselves and that is what makes the world go around , right?

We each have our own "style " of writing and communicating and typing limits or computer use too.

On the TOS forum we hear about the good and the bad - the full spectrum.

I think it helps to know both sides, so maybe someone just coming into it might be more firm about getting help early on and hopefully not end up on the chronic/extreme pain side of it.

Thanks everyone!

Curious - I'm going to give the sig thing a go and Jo - I see your point big time - that it's important to motivate people to get the correct treatment asap!!

Mary - nice to meet you - thanks babe.. I still struggle with the fact that the world doesn't revolve around me!! It would be SO much simpler (and better run..).

Artist - as every my dear - thanks! you did make me feel so much better - I just worry that I'm scary!!! (actually, if I put the broomstick and cauldron away it would probaly be better... hey, want to lend me your toad for some scary potion?)

Ada - thanks so much for letting me be a lichen off the back of one of your posts........

Love y'all

Froggsy xxxxxxxxxxxx

(bloody hell - i'm becoming American... y'all!??!)