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Thread: We're the orphans even here at CareCure

  1. #11
    This is why I absolutely abhor shorthand, acronyms, and abbreviations, which are rampant on the forum. No wonder you feel like an orphan when no one knows what you are talking about.

    PEOPLE....we need to communicate with one another in a language we all can understand....That means....you must define your terms. I understand that means you need to type a little more to be perfectly understood....but damn, isn't it worth it to get you point across to the broadest audience!!!!!!!!!!!!!!!!!

    GJ

    PS. Sorry I mistook your post but if you search the internet you will find that "neuro-CP" can refer to cerebral palsy first and foremost on search engines.....not everyone thinks inside your head. If you want to be understood, you need to define terms. Thank you for finally defining your orphan status as Central Pain. Sorry if I seem to be going off on you......but I am fed up to my eyeballs in everyone on this forum expecting everyone else to understand their form of shorthand. Define your terms when you post...how much effort does that take!!!!!!

  2. #12
    Quote Originally Posted by arndog View Post
    CP (central pain) makes you a CP (couch potato) unable to concentrate on the simplest CP (crossword puzzle) and makes you into a CP (crazy person).
    Haaaaaaa.

  3. #13
    Quote Originally Posted by gjnl View Post
    This is why I absolutely abhor shorthand, acronyms, and abbreviations, which are rampant on the forum. No wonder you feel like an orphan when no one knows what you are talking about.

    PEOPLE....we need to communicate with one another in a language we all can understand....That means....you must define your terms. I understand that means you need to type a little more to be perfectly understood....but damn, isn't it worth it to get you point across to the broadest audience!!!!!!!!!!!!!!!!!

    GJ

    PS. Sorry I mistook your post but if you search the internet you will find that "neuro-CP" can refer to cerebral palsy first and foremost on search engines.....not everyone thinks inside your head. If you want to be understood, you need to define terms. Thank you for finally defining your orphan status as Central Pain. Sorry if I seem to be going off on you......but I am fed up to my eyeballs in everyone on this forum expecting everyone else to understand their form of shorthand. Define your terms when you post...how much effort does that take!!!!!!

    Um....OK. Sorry.

  4. #14
    Moderator jody's Avatar
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    I dont think it matters it people totally get it. I have a diagnosis of central pain syndrom that I dont agree with because my incredible belly pain that they think is cp, responds to pain medication. the burn and broken glass feeling in my feet, the skewer stabs in my fingers and toes, does not get better with pain meds.
    I found I think, that its kinder to spare my friends a family the description of my pain.
    they know its really bad sometimes. I dont need to say. Im quieter and less active, and hold my breath alot.
    and you are wrong about people here not getting it. there are a few people here with central pain.


    im ok with people not knowing what its like to feel like your feet have been set afire. the only people I really need to get it though is my Dr's, if they didnt get I would have no control at all.


    if only there were a way to treat neuro pain. im sorry you are hurting so badly. I know that does nothing for you, but its all I got. I do try to understand though, im sure I cant really get what you are living with though, even though I have been diagnosed with cp. I can imagine though that you are not making it up. that it is very bad for you indeed. im sorry.
    Last edited by jody; 03-13-2011 at 12:05 AM.

  5. #15
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    Quote Originally Posted by gjnl View Post
    This is why I absolutely abhor shorthand, acronyms, and abbreviations, which are rampant on the forum. No wonder you feel like an orphan when no one knows what you are talking about.

    PEOPLE....we need to communicate with one another in a language we all can understand....That means....you must define your terms. I understand that means you need to type a little more to be perfectly understood....but damn, isn't it worth it to get you point across to the broadest audience!!!!!!!!!!!!!!!!!

    GJ

    PS. Sorry I mistook your post but if you search the internet you will find that "neuro-CP" can refer to cerebral palsy first and foremost on search engines.....not everyone thinks inside your head. If you want to be understood, you need to define terms. Thank you for finally defining your orphan status as Central Pain. Sorry if I seem to be going off on you......but I am fed up to my eyeballs in everyone on this forum expecting everyone else to understand their form of shorthand. Define your terms when you post...how much effort does that take!!!!!!
    Of course this is in the PAIN forum so why would YOU ASSUME he was speaking of Cerebral Palsy? I usually don't google before I post...

    And...no he doesn't have to type a little more or define his terms...you just need to read and comprehend a little more before responding and going off or perhaps not respond at all.

    Do you have central pain? I understand why he feels this way. Seriously!

    Thanks.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  6. #16
    Quote Originally Posted by LindaT View Post
    Um....OK. Sorry.
    Linda, I don't know what you are apologizing for. My comments were directed at the original poster, who should have defined his/her terms if he/she is trying to communicate their dissatisfaction with the acknowledgment of their disability on this website. I was trying to be empathetic to the original poster and acknowledge their pain in feeling left out of the discussion, an "orphan" on this website. Then I was blindsighted by my interpretation of their disability, because they did not do a good job in explaining their issues. My point is...if you want to be understood and acknowledged then be clear in your language....DON'T use terms that are not understood clearly by your audience.

    GJ

  7. #17
    Quote Originally Posted by gjnl View Post
    Linda, I don't know what you are apologizing for. My comments were directed at the original poster, who should have defined his/her terms if he/she is trying to communicate their dissatisfaction with the acknowledgment of their disability on this website. I was trying to be empathetic to the original poster and acknowledge their pain in feeling left out of the discussion, an "orphan" on this website. Then I was blindsighted by my interpretation of their disability, because they did not do a good job in explaining their issues. My point is...if you want to be understood and acknowledged then be clear in your language....DON'T use terms that are not understood clearly by your audience.

    GJ
    I use those acronyms a lot and since it was a pain topic did not think it would be confusing.
    You were just trying to help. I was being silly and did not come across right in printed word.
    Nothing for any of us to be upset about. It was just a misunderstanding.

  8. #18
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    CP(Central Pain)=CPITA(Chronic Pain in the Ass)
    CP=Lack of ability to communicate clearly
    CP=going to the grocery store with a list and still not getting three things that were on the list
    CP=talking in circles and it being noticed
    CP=deciding to go back on the drugs because I can't do this without drugs....I don't care if I am foggy...I can't look at a magazine and tell you what pictures I looked at three minutes ago.
    CP=deciding that there are far worse things than death.

    I am sorry GJNL...I did not mean to be hateful.
    Last edited by darkeyed_daisy; 03-13-2011 at 03:44 PM.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  9. #19
    Bollefen

    Hi

    I don't think I have a big enough sample to make statements, but now that you mention it, the people with cauda equina have all been suffering very much. Perhaps this is because the cord terminates at L2 and consequently the cauda equina people are dealing with an INCOMPLETE injury John Bonica used to say that central pain required an incomplete injury to be fully elaborated. It is certainly heartbreaking to read what is happening to you. I may be wrong, but I think part of the problem is that you are expected to function at a high level. The resulting stress has to be overwhelming.

    There are of course, people with incomplete injuries at other levels, who also have the terrible burning, so it his hard to draw final conclusions about who has the most severe pain. It is all so terrible that gradations seem to lose meaning.

    And there are some whose cord lesions seem to be complete who have fully elaborated central pain. There are a couple of articles which have theorized that there is some alternate pathway, such as nerves which accompany blood vessels, which can bypass the cord, yielding severe central pain in apparently complete injuries. The literature is sparse on this, but I think you are right that equina patients tend to have it very rough.

    As to those of us with central pain not posting with full explanation, I must plead guilty as charged. Central Pain is so unusual that many of us do not even try, but just feel that others with the condition will know what we are talking about.

  10. #20
    jody

    Hello

    I thought it was very astute of you to be able to separate out your central pain symptoms from what may be pain of a different cause. I have visceral pain in the bladder, which began at the same time as the central pain, but I do not think it is central pain. I have annoyed a couple of docs who thought otherwise.

    Central Pain is confusing and we still have a long way to go to make our verbal descriptions so clear that clinicians begin to realize what they do not know and have missed up until now. It is amazing to me that before Ron Tasker, doctors did not even realize that pain of central origin is different from ordinary pain.

    No doubt patients are partially to blame for not emphasizing how different central pain is. Doctors also must sharpen their verbal cues in order to give us hints on how to talk to them. Managed care strictly limits the amount of time a doctor may spend with a patient, yet if I had a half hour, I doubt I could clearly explain how central pain is different. There is no vernacular for central pain.

    The longest any doctor has given me to talk about this was fifteen minutes, and he was writing an article on central pain. I don't think he understood, but at that point in time, neither did I.

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