[JOAN_M]

i have been a member here for a few months, and i am seeing some discomfort and discontent going on here, and would like to tell you, as someone who is fairly new, what i think.
i am 54 and have had rsd for over 11 years and was an RN before the monster took over. so i have a pretty average to above average brain working here. i have read tons and tons of sites on the disease. i keep in touch with several people with rsd via e-mail and so i see the vast range of its curse.
i came here for information. i read all post with information and then decide if it has any significance to me and my personal fight with rsd. i offer my own information, if i have had the same symptoms or treatments or experiences, and if i think it will help someone. i am not 'pro' anyone or 'against' anyone. i do not have time for that. i appreciate everyone's strife.
i find the format hard to follow. a thread is often not a thread because people change the subject mid thread .... thus making the main purpose of the thread dormant and the question often unanswered.
i would like to see the site help as many people who drop by it, and the main purpose of the site to be to help, emotionally physically and psychologically and even spiritually, each person who comes here. and i would like to keep a thread a thread and just have more threads ....
we are all here for the same reason, and i believe the frustration and anger of rsd, which are so real and so raw, sometimes get in the way of supporting each other. peace, joan

[Jomar]

I tend to think of most threads as a conversation, sometimes they will bring up other thoughts and ideas, so the topics will meander about a bit.

And at times they will stray quite far from the subject or spark a lively discussion- which may need to be moved to it's own thread.
{I am happy to do that if asked}

If anyone feels an original question or topic has ever gone too far off track - there is always the option of using the "Quote" of the original post and bumping it back to the top.

[allentgamer]

I too used to be bugged by the meandering of posts, but now like Jo I realize that the posts are converstaions. Back on the BT spinal boards it really would get way off, and seemed to lose the question.

Here it really is not that bad, try going to some other boards and you will find there is none like this. Never really figured out why, but do know I fell inlove with everyone here because they agree to disagree sometimes. But always things work out, come together for good causes and many get helped.

It keeps everything lively and interesting to have the different opinions. I have learned a great deal in the 7 years I have been around.

[Imahotep]

I was pretty much an idiot savant before getting sick. Of course many people thought it was more idiot than savant.

Now I'm different. Concentrating on anything is scary since it can be interrupted by pain. My thinking is more fluid and more intuitive than it was. Where I used to develope equations and solve them in my head and could get most any estimate to within an order of magnitude, I'm lucky to get the simplest arithmetic problem correct now even with a pencil and paper or a calculator. Much of my problem is fear. It affects what I do and what I can post.

I have to choose threads and words carefully and still delete a lot of posts.

[Auberon]

Joan, your post was reflective of my feelings/thoughts.
I have a background in applied science and am very accustomed to finding information (read: scientific research) as needed and applying it.

I also include what those plagued with this curse have to say, but given the ability of CRPS to distract I agree that it would be easier if a thread remained on topic.

I too am desparate for a solution and support but believe the frustration and anger of rsd as you describe them sometimes get in the way of our supporting each other. The old adage KISS-----keep it simple ........

I hope I have not spoken out of turn.

best regards
Auberon

[JOAN_M]

auberon,
i just stated my thinking when i was reading through threads that had a lot of discourse in them but it looks as though not many agreed with me which is fine. i have not been a member here for long, and so i will keep my thoughts to myself and read what i feel is helpful to me and comment when i feel i can truly help someone going through something i relate to. it was nice to here from someone who thinks like i do, probably because we are newer and just searching for information and not big on the confrontation. i think many here were friends from the other site, which i was not a part of, and so have a more conversational relationship and don't mind the thread going off topic for that reason.
so different strokes for different folks, right?

and to imahotep ... it is okay to speak your mind and share your good and bad stuff. don't feel you need to edit youself. you have aright to your opinions and feelings. joan

[frogga]

it does get in the way. But the problem with a support group is we have to look at both medical and biological threads as well as the social support for people. I personally know that I use this site to get the support for living with this as well as for information. My friends and family are amzing but they have never lived with this sort of pain, they don't know how to help etc. Also, it is reassuring to know I am not going through all of this on my own and that I am not going mad!

I think we are making more effort to stick to one topic. But not always!
Love Froggsy xxxxxxxxxxxxx