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Thread: Do overs

  1. #1

    Do overs

    Stephanie Nielson's story is at http://www.ksl.com/?sid=29314477&nid...icle-popular-3 If you can read this with a dry eye, you are a better man than me.

    Stephanie is also the author at http://nieniedialogues.blogspot.com

    She had burns over 80% of her body in a plane crash and her face, formerly very pretty, is now disfigured with skin grafting. Her main thesis is "humility is beautiful". She says she would get back into that plane to become the woman she is today. I think she means she has gratitude for life, family, and love.

    You can SEE scarring, and be inspired by someone unfraid to face the public with hideous physiognomy. You cannot see pain, so an audience cannot respond, cannot be inspired by something they cannot picture. Central Pain is meaningless to the observer. Flames might do it, but not a condition which has no vocabulary and no visible manifestation. The "eye is the monopolist of the senses".

    Now I am not that kind of person, not that philosophical. I am research oriented and want science to attack disease with a fervor. I would not go back to the circumstances which gave me Central Pain. I could be wrong, but disfigurement, as terrible as it is, is probably less destructive to the self, to the identity, than relentless severe pain. I do not expect to see Bollefen, Arndog, Alan, Cass, Grange, SWH, Smoky, anyone else here or myself traveling around giving inspirational speeches as motivational speakers. I could see Betheny making people laugh, which is a real talent.

    This is perhaps unfortunate, as who can say what any experience has taught them, but I guess I just focus on what pain has taken away, and I cannot say that I would even consider going back, even knowing more about how to cope with it, now that I have gone through it. It has been a hard downward trajectory.

    I cannot make myself philosophical, and do not intend to go quietly into a mode where I can inspire others. Hence, I will not write a book, as some have suggested. They wouldn't want to read what I have to say about indifference to suffering. Instead, I intend to make people uncomfortable with any tendency to ignore those in pain. I would remind them of the researchers who create Central Pain in lab animals and measure their success by the "autotomy rate" the rate at which they chew off their legs to try to get rid of the burning.

    When they tell me I am "lucky" or that "You needed to learn something", I who am not a swearer, come very close to becoming one. I would never tell an audience they are good people and that they can learn from me. I would tell them we have to take the bands off our minds and accept that some people with pain are outside our imagination, and we should listen to them and credit what they are saying, without adopting the amateur therapist mode and remarking how bad our low back pain is. "Physical pain is the greatest evil"--Augustine.

    Yet, like others, I think Stephanie Nielson is a genuine hero. She inspires me. My own disease has not served as an inspiration to anyone, least of all myself. If you disagree, it is because you can SEE my words. Given the above, I think Christopher Reeve is perhaps the most outstanding man of his era. He didn't have central pain, but he helped fund research to study it. With terrific problems of his own, surely it took a monumental amount of charitable spirit to allocate funds to a condition he did not have. And his doctor was our own Dr. Wise Young.
    Last edited by dejerine; 04-04-2014 at 09:46 PM.

  2. #2
    I have lost the ability to be motivated. O can't be bothered to read this, too jaded unless you tell me she has our level, I retract that I cannot wish that or want to know about it or worse, read about it and visualize my reality through someone gifted through writing.

    My Primary an old Jewish Doc who keeps me going, said CP is a double curse, It will never kill you though you will pray it would and secondly it will always be minimized because you look too good to be that bad.

    Dej I hope I have mentioned how much I value your contributions, and I apologize for the harsh treatment of someone who clearly is both traumatized and struggles to get by. I hope you understand.

    Ket

  3. #3
    Super Moderator Sue Pendleton's Avatar
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    I tend to stay away from inspirational stuff too. But knowing what I about the causes of central pain and chronic neurogenic pain I would be surprised by anyone with 80% of their body burned not having a permanent pain syndrome.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  4. #4
    Bollefen

    That is a terrific comment by your Old Jewish doctor. It is also a bit surprising to see your radiologist commit himself by using the word "notable" stenosis. Either you are very bad or your radiologist is very willing to state what he sees and not hedge.

    I have never even seen a radiology report which states more than "moderate" stenosis, "mild" stenosis, "some" stenosis, "relative" stenosis, or just "stenosis". If the cord is bent over at right angles, sometimes they will go all out and jump to "marked" stenosis. Consider your stenosis marked. Okay, how marked?

    Why these vague adjectives are used at all when the GE MRI machine has mathematical cursors which will give the AP diameter in tenths of a mm is beyond me. Stenosis (narrowing of the spinal canal) is relative to the size of the cord, which may vary from 6mm to 11mm in ordinary occurence. A 10mm cord is okay in a 13 mm canal but not okay in a 9mm canal. It is also relative to the space in front of the cord for the spinal artery and vein, as well as the collateral or medullary artery that comes in from one side to augment flow in the upper cervical region at around C4.

    If I live long enough I will come across a radiology report which says "The midsagittal cord measures 9mm, the antero-posterior diameter of the canal is 10mm with no narrowing by the posterior longitudinal ligament at disc interspaces." This would mean the clinician knows only 1mm is left for the ant. spinal artery. By flexing or extending the neck, the clinician could then determine if posture is a threat to the patient, and how much room is available for the bone rongeur anteriorly if he intends to access the spinal canal.

    Words such as "notable", while better than usual, coming from a radiologist who never clinically evaluates patients and may not know what is clinically notable, always renew my wish that radiologists would actually use the means provided by General Electric to say precisely what the diameter of the spinal canal is and precisely what the degree of impingement by bone or osteophyte is upon that space. This feature, mathematical measurement, was in the software around 1985 and software engineers have been paid decent salaries to provide the feature, so why not use it. Sort of like turning off the transponder.

    To that day when radiologists, the hedge word managers, will expend the necessary sixty seconds to place the cursors on the image and give a quantitative report. At six thousand dollars, it seems not too much to ask. It would also go far in making sure everyone is speaking the same language.


    In radiology-speak your post was markedly good and my condition is notably bad. You are moderately old and I have a small appendage growing from my forehead, so "minor" surgery of some kind seems like a pretty good idea somewhere in the vicinity of my body.

    Note to 911 operator: "Hello, I am in a moderately sized slot in the canyon wall "somewhere" around Moab, and my foot seems to be slightly trapped under a rock of some kind, while a poisonous rattlesnake is somewhat close to my nose. That says it all, right?

    Marriage Proposal: I kind of like you, and thought perhaps we should do something about it sometime or other.

    Affordable Care Act Programmer: I sort of typed some code and put it somewhere in one of your desk drawers. It should probably compile.

    Bankrobber: You should probably put something somewhere or I might do something.

    Waiter: We have some food somewhere and you should probably do something with it. Would you like the special, well it is not really special, really more moderate.

    College application: I did pretty well on my ACT and my grades are moderately good. I did a small amount of leadership in high school, but had a suggestion of faint trace of sub noticeable outstandingness.

    Hitting on a girl: Hey moderately okay babe, I kind of notice your reasonably observable semi-features some of the time. What say we consider thinking about some slight change in something.

    Neil Armstrong: That's not many steps for organisms, and a pretty reasonable distance for something else.

    John Wayne surrounded by Indians: It's kind of not noisy out there, possibly too not noisy.

    Highway Patrol: You were probably not driving very slowly and you are slightly unsteady, so I am maybe going to make some kind of a mark somewhere on a piece of paper.


    Perspiring Surgeon to scrub nurse:

    Not entirely unbloody here!

    Give me a Small thing!

    Moderate thing!

    Something!

    Something else!

    Whatever!

    Whenever!


    McDonalds. Do you want it moderately increased sized? Will that be for somewhere around here or to go?
    Last edited by dejerine; 04-06-2014 at 10:45 PM.

  5. #5
    Senior Member alan's Avatar
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    That's a pretty wise doctor. He said exactly what I (and so many of us) feel.
    Alan

    Proofread carefully to see if you any words out.

  6. #6
    Oh dej, I just had to delurk. Giggling about your radiology speak....my 1st post ependymoma resection MRI...wait for it...the cord is now small....

    Tapped on my Kindle....

  7. #7
    Quote Originally Posted by Skye83 View Post
    Oh dej, I just had to delurk. Giggling about your radiology speak....my 1st post ependymoma resection MRI...wait for it...the cord is now small....

    Tapped on my Kindle....
    Good to see you around, I hope all is going well for you.

  8. #8
    Good post , Dej.

    I had an article recently written about me as a 'disabled' person involved in outdoor recreation in High Country News 3 weeks ago. The name is "Mind over Mountain". They mention chronic pain but I am sure that goes in one ear and out the other when most people read it. What they see is the mobility 'challenges' of crutches, paralyzed legs, and weak legs. They have NO IDEA that you could lump the bowel, bladder, mobility, loss of range of motion, bladder infections into one pile and multiply it by 100 and it wouldn't touch the obstacle of chronic pain which is invisible. Oh well.

    I am surprised an old (58 year old) person would be interesting enough to read about. I just try to get through the day. No offense to all the radiologists out there, but when I read their reports , I take it all with a grain of salt and have to look for corroboration with objective physical exam evidence. Of course that is missing for chronic neuropathic pain with only a few words about allodynia or dysesthesia if you are lucky. Basically, if you are trying to get disability from JUST chronic pain - you are going to need a lot of luck.

  9. #9
    Quote Originally Posted by David Berg View Post
    Good to see you around, I hope all is going well for you.
    Hi, David! Actually, I am much worse, esp with issues ABOVE the level of injury. I don't want to hijack this wonderful thread with all that. I want to try and update my situation on a Word doc., but not able to at this time. When I can, I'll post a new thread bc nobody can seem to tell me why I'm going downhill so fast.

    I have to inspire myself to keep going. All of us with severe cp know that any real external understanding can only come from those similarly afflicted. How we deal with it internally is personal choice. Dej's radiology-speak just cracks me up every time I read it. It's good for me to laugh-even gallows humor appeals to me. I like to give kudos to those who can make me smile these daykkzkks-it's no small feat.

    No turtles in sight, but a plethora of wild birds keep me going. Nature is interesting and helps me get outside, literally and physically. I have to pat myself on the back all the time bc only I know what a Herculean effort it takes for me to accomplish anything. I have the choice at any point in time to end my life. I think I'm just a very tenacious person. I have to inspire myself every day to keep going, not to expect the magic bullet anymore, but just keep going.

    Will update for posterity if nothing else and pick y'alls brains about my baffling symptoms when I'm able. CC is very special to me. Had to let dej know I love his writing. Hope all is well with you and yours, David.

    Tapped tenaciously on my Kindle....

  10. #10
    Quote Originally Posted by Skye83 View Post
    Hi, David! Actually, I am much worse, esp with issues ABOVE the level of injury. I don't want to hijack this wonderful thread with all that. I want to try and update my situation on a Word doc., but not able to at this time. When I can, I'll post a new thread bc nobody can seem to tell me why I'm going downhill so fast.

    I have to inspire myself to keep going. All of us with severe cp know that any real external understanding can only come from those similarly afflicted. How we deal with it internally is personal choice. Dej's radiology-speak just cracks me up every time I read it. It's good for me to laugh-even gallows humor appeals to me. I like to give kudos to those who can make me smile these daykkzkks-it's no small feat.

    No turtles in sight, but a plethora of wild birds keep me going. Nature is interesting and helps me get outside, literally and physically. I have to pat myself on the back all the time bc only I know what a Herculean effort it takes for me to accomplish anything. I have the choice at any point in time to end my life. I think I'm just a very tenacious person. I have to inspire myself every day to keep going, not to expect the magic bullet anymore, but just keep going.

    Will update for posterity if nothing else and pick y'alls brains about my baffling symptoms when I'm able. CC is very special to me. Had to let dej know I love his writing. Hope all is well with you and yours, David.

    Tapped tenaciously on my Kindle....
    Sorry to hear things haven't gone the way you would hope, but it's great to hear that you're continuing to pushing forward. I remember your story of the red-eared slider turtle and a picture of some in a display that I took to post for you years ago. We now have a home just a few minutes from the Bass Pro shop where I took that picture and sometimes when we visit the store I am reminded of that.

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