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Coping With Pain: Let's Get Real

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  • #76
    Originally posted by TAM63 View Post
    Great post as usual, Dejerine.

    I, as one of "the public" will say that last bit couldn't be more correct - I've rattled around medical folks and hospitals more than most, especially in recent years.

    Yet - I thought of SCI as "legs don't work" (or obviously more extensive paralysis) but never thought about bowel/bladder issues, and had no clue that it would cause pain. I would have thought - cord doesn't work, can't feel anything (thus can't feel pain).

    I would imagine most people think the same, unfortunately.

    I think this is an accurate discription of how most AB's view SCI/paralysis.
    "The truth will set you free. But first, it will piss you off." -Gloria Steinem

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    • #77
      It probably is. I'd like to think I'm not more clueless than the average person, and I'm sorry to admit I had absolutely no idea. I learned about neurogenic bladder (before I joined this forum) when my dog became paralyzed.

      I wonder how the public perception could be changed.

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      • #78
        Wow, never thought telling someone of MY experience would cause a spark...

        Originally posted by thehipcrip View Post
        I love you for this.

        I doubt anyone would tell a vent-dependent quad that breathing without assistance is a mind over body thing. Telling someone that controlling their neuropathic pain, which comes from the same type of physical damage that prevents a vent-dependent quad's diaphragm from working, that it's really just a matter of not "sitting around all day", "keeping busy", or "making yourself so tired you can't feel the pain" may not be dangerous, but it is insulting and offensive.

        There is enough negativity and stigma associated with usiing medication, especially opiates, to manage pain well enough to have some semblance of a life. It may not be intentional, but hearing about how you think your way free of pain, or have such a strong tolerance to pain that all you've ever needed is Tylenol, adds to that stigma. It implies that we are somehow less in control of ourselves or have a lower pain tolerance than you. The subtext is that we're weak and that if we were just a little stronger, we could do those things too. We're already fighting these misconceptions in our doctors' offices, at our jobs and schools, and sadly, in our communities and homes. The last thing we need is our fellow crips making remarks that make us feel less than strong because our pain is of a nature and duration that have pushed us past the breaking point.

        Sheesh, I intended to give you my take on your original post, Danine, but I got so riled up over this issue that I spent my last energy on it. I'll be back tomorrow when hopefully my stamina will be higher, my pain will be better controlled, and my right arm will be functional enough to type with two hands instead of one.
        ------------------------------------------------------------------------
        Wow... sometimes I am left totally speechless (which doesn't happen very often)

        *rebajane* & *brucec* understood what I was trying to say. That is: Hey, I tried this and it worked for me. If you want to give it a try, great! and if you don't, great!

        We are here at CareCure because we want to share our experiences, ideas and support each other. I see all of us as essentially one big extended family. We all understand what we are going through and like a family, we are here to give each other support, a shoulder to cry on, positive reinforcement, or simply "It will be okay", etc. And, I'm no different. If I can help, I will!

        *thehipcrip*'s belief of "keeping busy", or "making yourself so tired you can't feel the pain" may not be dangerous, but it is insulting and offensive ???? I really don't know how to respond to it. Why is MY wanting and MY choice to keep MYSELF busy or tired to minimize MY pain offend or insult you?

        NEVER once did I presume my pain is worse or my pain tolerance is better than the next SCI-er. (I have days, I am sure most of you can relate, snow/rain/cloudy/windy/sunny days where the pain is hard to mask or forget, "I", the individual, made the choice of how "I" will deal with it.) I didn't find the right method for me right away, I tried many suggestions from people at CareCure and other SCI-ers. I was never offend or insult by ideas. We share ideas to help each other... and they are just ideas. People are welcome to try or not. There is no reason to be "offended" or "insulted" by someone's way of doing things. Once again, my method may not work for everyone, but it may work for someone. If you want to give it a try, great! and if you don't, great!

        I am suffering from severe nerve pain from 2 locations of my spinal cord. Not saying my is worse than everyone else but to point out that I have experience with pain, my pain. I am not saying that I understand all pain, but I am sympathetic towards pain and people in pain.

        *dejerine* thank you for the compliment. Thank you for the write up on pain, I enjoyed reading and learning about it. I never believed one pain is the same as another, or one person's suffering is identical to the next. I have many clients who are of the same classification as me, C 6/7 quad, but our pain level and tolerance level are all different and we all deal with it differently. It does not mean my way is the right way.

        To conclude this: I know MY pain and this is MY method and it works for ME (or maybe only me, no one knows). If you want to give it a try, great! and if you don't, great!

        Wish everyone to have a pain-less or less-pain 2010!

        XOXOXO

        K
        "Always look at the bright side of life...."

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