"OK, let's get serious." # 2

Discussion in 'Fibromyalgia Main Forum' started by SharonR, Sep 6, 2002.

  1. SharonR

    SharonR New Member

    Ok, let's get serious 09/01/02 11:02 AM

    I have a proposal, there are a lot of really bright people here with very aggravating conditions.
    And someone is always posting a similarity thing, which are really the most responded to on this board.
    How about a group of us individually volunteering to post the thing that seems to be the most unusual about our situation, and see how many responses immolate our own.
    i.e.: age groups, 15/20, 21/30, 30/39, 40/50, and so on.
    What could be the common denominators that spark this DD?
    Is it inherited? Is it a virus. Does it lie dormant like herpes, till something triggers it.
    I know all of this stuff must be here but I for one do not have the time nor energy to go thru everything on this board.
    Broken down into teams may give us the ability to take a look at the "big picture", and not wear us down.
    Each team would be responsible for looking at the answers in their own group of postings, and connecting the dots.
    Then all come together and come up with some sort of synopsis.
    Then take it a step further and cross-link between age groups.
    I am so tired of muddling thru all the fragmented information.
    Who wants to play?
    Smiles
    SharonR


  2. SharonR

    SharonR New Member

    Ok, let's get serious 09/01/02 11:02 AM

    I have a proposal, there are a lot of really bright people here with very aggravating conditions.
    And someone is always posting a similarity thing, which are really the most responded to on this board.
    How about a group of us individually volunteering to post the thing that seems to be the most unusual about our situation, and see how many responses immolate our own.
    i.e.: age groups, 15/20, 21/30, 30/39, 40/50, and so on.
    What could be the common denominators that spark this DD?
    Is it inherited? Is it a virus. Does it lie dormant like herpes, till something triggers it.
    I know all of this stuff must be here but I for one do not have the time nor energy to go thru everything on this board.
    Broken down into teams may give us the ability to take a look at the "big picture", and not wear us down.
    Each team would be responsible for looking at the answers in their own group of postings, and connecting the dots.
    Then all come together and come up with some sort of synopsis.
    Then take it a step further and cross-link between age groups.
    I am so tired of muddling thru all the fragmented information.
    Who wants to play?
    Smiles
    SharonR


  3. SharonR

    SharonR New Member

    These post get to long to read very fast.
    Remember that this is everyone's game.
    We may need to figure out who wants to do what and then form little clusters of help groups.
    If we are to make progress we have to keep it simple enough to comprehend.
    Smiles
    SharonR
  4. TeresaBnGA

    TeresaBnGA New Member

    Let's do it....but what about some of us getting together and making up a questionare?

    soft hugs!
    Teresa :)
    [This Message was Edited on 09/06/2002]
  5. Shoobie

    Shoobie New Member

    I could always put the questionaire up as a web page and have the data go directly into a database.

    Just a thought.

    -Shoobie
  6. TeresaBnGA

    TeresaBnGA New Member

    That is a fantastic idea!!!!!!!!!!!!!! That would be great!!!!

    Soft hugs!
    Teresa :)
  7. tandy

    tandy New Member

    Thumbs up girl!thats the way to go!!
  8. Shoobie

    Shoobie New Member

    Can you all write up the questionaire and I'll convert it to a web page?

    A thought: Should we make it a multi-part quiz? Perhaps post Part I and let it sit for a while, then post Part II, etc? Maybe each part could revolve around particular topics?

    Too many questions to answer at once may be overwhelming for some. I know I'd get a brain fry.

    Thoughts? Go team, go!

    -Shoobie
  9. Karrot

    Karrot New Member

    First of all, I will bump the age polls whenever I'm on here - good idea about the bump/delete thing.

    Secondly, is there anyway to keep the age polls or whatever other polls we chose to do at the top of the page like the patient guide thing?? Just wondering if that could happen - that way we wouldn't have to worry about losing an age group or two.

    And, Sharon, I always want to play :)

    Karrot
  10. SharonR

    SharonR New Member

    I'm not quite sure of what you are proposing, but I'm game for anything that works. Please explain what you need.
    Smiles
    SharonR
  11. SharonR

    SharonR New Member

    Thanks Karrot,
    Nope, this board page stays stationary, but the posts change.
    Keeping all this organized will be the challange. See Shoobies post on putting to gether a questionaire(above).
    Any suggestions? Should the questioaires be for the different age groups? Only because the cause and effect of different environmental/stress/ issues have changed over the years.
    Smiles
    SharonR
  12. Karrot

    Karrot New Member

    that maybe we should center the questionaires around the probable cause. Because it seems to strike anyone of any age, age doesn't seem to be the determining factor. But how would we begin to speculate on how to divide cause into different categories? So perhaps, age groups would serve to organize better....?? What do you think?

    Let me know if I can help in any way.

    Karrot
  13. SharonR

    SharonR New Member

    There is a thread going on called probable cause, mental or physical/research.
    And by reading the responses everyone experienced at least one or both. I have always heard that stress can kill, but there are some tough people on this board.
    The average person probably would have expired.
    I am not sure of how this thing should evolve, but I recognize that if we can't control the info, (maybe a questionaire multiple choice) we will get bogged down in the mire again.
    And I agree, the energy vampires are right behind me so I have to have it simple, like everyone else it's too precious to waste.
    Suggestions anyone?
    Smiles
    SharonR
  14. Shoobie

    Shoobie New Member

    I'm known to come up with the "strange" thoughts, so if this one freaks you out too much, please forgive me!

    The other day I got to thinking about the research and how I've heard alot of people say that they hardly even get "regular" sick after getting this illness. Also, we are very STRONG people to deal with this day after day like you noted.

    So here's where my brain took a U-turn...

    I started thinking what if someday some major plague infects the world and we're the only ones that can survive it? (If you've ever seen or read The Stand you'll see where I got this notion)

    Not that I'd ever want that to happen, or that I like to think like that, but sometimes my brain is doing overttime. :p

    OK... maybe I should just stick to research and keep my mind from wandering into those dark caves of craziness. LOL


    -Shoobie
  15. Shoobie

    Shoobie New Member

    Here is an example for what I propose for the questionaire:

    Part I - Onset
    Part II - Symptoms
    Part III - Meds & Therapies (did they help or not)

    Something like that so nobody would have to fill out everything at once.

    We could put up Part I and give it a few weeks for responses.

    I would like to try to make it as "word-free" as possible, incorporating alot of checkboxes and yes/no answers.

    For Onset, we could have categories like Age Group, Type (accident, emotional, illness, etc.), Signs before onset? yes/no, etc., Family History (of illness), Physical State before illness (very active, active, sometimes active, not active).. anything else we could think of.

    I hope this is more clear.

    SO, what I'm asking is that since doing the web page is alot of work in itself (and I work full-time) is if you all could come up with the questions and I'll do the web page.

    Thanks!

    -Shoobie
    [This Message was Edited on 09/06/2002]
  16. Cactuslil

    Cactuslil New Member

    Then she hit a point or two, given much liberty and all, that in The Stand, there was much to think about...first of all I am a mormon and I swear Stephen King must read some of our latter day work and most certainly in The Stand there were some really hauntingly LDS lines...if you chose to look at them that way.

    I reviewed the replies and the one item that was not included but for me has been very important is this: I have had "this" ex-file-type visitor for ten years; since my son was born. "In the beginning...ha-ha...it seemed the movement from body system to body system happened with rapidity; I was sicker than hell for two years..I don't even know how I survived it...then "it" left that body system and it was rough, but not as rough as....ad infinitum? or could there be closure of this condition?

    Symptoms I had three years ago when I first came to this board and really that was the time my denial began to end, as I saw others had this bizarre set of symptoms also. From that point I narrowed my "brand" of symptoms down to body systems; some have more or less left...bye-bye. Others have evolved into something else. I even commented to the doc when I saw him about the double vision that wouldn't it be a joke if I never had FMS/MPC in the first place and it was plain old Rh.arthritis/Lupus? or not even lupus as the butterfly rash on my face that had been there eight years left about six months ago. My skin color is back to white rather than red.

    One thing for certain, this is typical by its atypicalness.

    I wish you well on your venture. Does sound interesting. Love CactusLil'
  17. SharonR

    SharonR New Member

    Done Shoobie!!
    Smiles
    SharonR
  18. Shoobie

    Shoobie New Member

    Please let me know if you have other ideas!

    I tend to take the bull by the horns when given an assigment and sometimes my suggestions can be taken as orders or "this is the way it's going to be". Just want you to know that I'm always open to suggestions!! I just happen to be a Web Application Developer for a living, so this is my arena of expertise.

    -Shoobie

    P.S. Can I be Agent 99?

    P.P.S. I had to edit this message because I wrote "take the bulls by the horn". Nanna would have loved that type-o![This Message was Edited on 09/06/2002]
  19. SharonR

    SharonR New Member

    I think your ideas are great, I am looking on the archives to see what has already been done, and why it didn't work.
    There have been so many questionaires, people are probably "sick" of them. Take a look yourself.
    But if we can roll on this, make it user friendly, we just may see some results.
    "Hell hath no fury like the Wrath of a Women".And there are a lot of furious people on here.
    And let's not exclude the guy's.
    Let's do a couple day's of research on here, get some input, and we will do it!
    I'm not sure that the answer is going to be pretty, but in our case ignorance is not bliss.
    I think there are some apparent answers out there already.
    And I am a certified optimist, so it must be yucky.
    Smiles
    SharonR
    PS You can be as agressive as you like, that's what it will take anyway.[This Message was Edited on 09/06/2002]
  20. Shoobie

    Shoobie New Member

    We could certainly just search the posts! I just got to thinking that it may be hard to track percentages. We'd have to keep careful track of who said what so that we didn't have somebody accounted for more than once.
    Plus we'd have to wade through alot of verbiage.

    Were there full-blown questionaires out there? I'll have to do a searh.

    Lemme know what you come up with and I'll help in any way!

    Any route we get our info can be entered into a database. That would be the best utility for running reports and correlations.

    If Jaimy gets her grant, wouldn't it be nice if we could get her one step ahead of the game! :)

    Agent 99