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    #31
    Dr Young's wise suggestion

    Well, Doc, I've taken up your challenge. Not being a country & western aficionado, it's been a stretch, but I managed to get in mention of the pickup, the dog AND the Lawd!

    Anyone wants to add a tune to this?
    =========================================
    (Back On) The Road To A Cure
    ----------------------------
    Ah've been down 'most every highway,
    Ah've traveled every road
    My dog, my pickup and my Safewheel(TM) /
    Wheelchair carryin' the load

    Against all reas'nable advice
    Ah've searched every nook and each cranny
    Facing the scorn of mah peers
    Who prefer sittin' still on their fannies

    They think that Ah've totally lost it
    Them doctors look at me askance
    Prescribe more Prozac & Viagra
    When Ah tell them "Someday Ah WILL dance!"

    Chorus
    Oh cure! C-U-R-E! Oh cure!
    If Ah don't try Ah'll never know for sure
    If this is the road that's hell's highway
    Or if Ah'm back on the road to a cure

    To get them lost limbs back in shape
    Ah've been rollin' & stretchin' & strainin'
    From FES to shark embryo chowder
    Now Ah'm tryin' ambulatory trainin'

    Ah put all mah faith in mah saviour
    And researchers, close and far flung
    Ah promise the best of behaviour
    If Ah can just get well while Ah'm Young!

    Chorus
    Oh cure! C-U-R-E! Oh cure!
    If Ah don't try Ah'll never know for sure
    If this is the road that's hell's highway
    Or if Ah'm back on the road to a cure
    =============================================
    All Rights (Un)reserved by BenL
    Down heah in sunny South Africa
    (Actually I prefer prog rock.)

    Comment


      #32
      Brillian Ben

      I love it!! lol [img]/forum/images/smilies/smile.gif[/img]
      "No mother on either side could say that whatever was won was worth my son"--Steve Mason

      Comment


        #33
        if it isn't one thing...

        Man, got a hammer blow to the center of my Being.

        Started feeling odd a couple days ago, kinda chilled, and it's over a 100 degrees out here; really sensative, cried watching Elvis '68 special ('course, who doesn't, right?). Sweating weird, all over the legs, and the legs are just ALL OVER THE PLACE with contractions/spasms; thigh muscles won't let me stretch out in bed.

        Woke up today with a headache, did my errands and came back inside and just died.3 pints of water, bammo! very heavy head, high fever (over 100) and dizzy and feeling slammed, just miserable. Going to bed in a few minutes, and hope we do better tommorrow.

        What is it I have? My wife says my breath smells atrocious; my body aches, tired, drained, can barely hold my head up. Food poisoning, flu? My 12 yr old son was down last Wednesday with similar complaints, but he had just finished football practice, and I asumed he was near exhaustion. He got better the next day, then three days later, I started to feel it, and now...

        Yeah, I can hear it, 'go to the docs', v,' and if I die in the morning even more than now, hey, I will go, but I'd like to avoid having to get back into a car right now, thanks.

        Can't figure out if it was something I ate: everybody else ate the same, though.

        Any guesses?

        Man, I'm dyin'... reminds me of the food poisoning in Taiwan...

        vgrafen
        vgrafen

        My book, 'Scouring the globe for a cure: a disabled man's experiences with stem cell treatment' is available at Booklocker at the following address:

        www.booklocker.com/books/2857.html

        A percentage of every sale goes to CareCure.

        Comment


          #34
          Vgrafen

          I don't know, but could it be disreflexia? How about your blood pressure readings? I would try to see a doctor.

          Russ Byrd

          Comment


            #35
            Ben, what wonderful lyrics!

            Vgrafen, hope you get better soon.

            Wise.

            Comment


              #36
              Sounds like a UTI Vgrafen

              Hope you get feeling better.

              "Life is about how you
              respond to not only the
              challenges you're dealt but
              the challenges you seek...If
              you have no goals, no
              mountains to climb, your
              soul dies".~Liz Fordred
              "Life is about how you
              respond to not only the
              challenges you're dealt but
              the challenges you seek...If
              you have no goals, no
              mountains to climb, your
              soul dies".~Liz Fordred

              Comment


                #37
                hmmmmmmm

                V check your e-mail
                1FineSpineRN

                Comment


                  #38
                  update

                  Thanks everybody for the kind thoughts here and thru email. I'm better today, still weak but fever and nausea gone and balance restored. No, it wasn't dysreflexia or a UTI, of which I have had previous bouts with and can pretty much tell now at their onset. I think it was a virus, though it may be food-related, as I have a red patch/rash thing near my right ankle, which when I touch, my leg doesn't like AT ALL. I'll stay up with it and see how I progress.

                  Ben:

                  Hey, great lyrics, really nicely done. You watch, I'm stealin' them en masse and when I can, I'll put some chords to it. Great stuff.

                  GenRR:

                  Look, friend, I am no 'Cheng salesman,' as you claim, but if a person is sci and in the acute phase, Cheng and his people are convinced he can help them to recover, if a person can get to him in time, that is. I don't want to see anybody else suffer from sci, and based on what I learned in Taiwan, acutes stand a good chance of recovery if they go to him quickly. That is as far as it goes, and no, I don't 'get a kickback for every procedure I sell for Cheng.'

                  Mary:

                  Geez, you're a pain in the ass! 'Course I can say that 'cause your my pal. Seriously, thanks for the insights. Can't argue with anything you say, especially when my wife agrees with you!

                  Anybody remember Chu-Chu? She's writing me again, but with a mild and pleasant tone; a nice change. I suggested she begin posting here with her questions for me, so everybody can benefit. At any rate, no, Chu, recovery is still snail's pace for me; it's happening, but it's ugly. My spasms are insane, can't straighten my legs or keep them straight. As for my 'next procedure,' as I have said here several times, it will no doubt be another year or more until I have fully recovered from Cheng's surgery; I still have spinal shock, the large dead patch in my back remains in stasis, and I'm very tender and swollen there. Maybe when I have fully healed, I'll have more of whatever recovery I might get. Yes, I am ever-hopeful, but that's just me. Thanks for checking in.

                  vgrafen
                  vgrafen

                  My book, 'Scouring the globe for a cure: a disabled man's experiences with stem cell treatment' is available at Booklocker at the following address:

                  www.booklocker.com/books/2857.html

                  A percentage of every sale goes to CareCure.

                  Comment


                    #39
                    v, what do you mean by spinal shock. How do you know if you have it?

                    Comment


                      #40
                      I am everyone's pain in da ass.....

                      Which insights? The medical ones or the ones concerning the nature of when men get sick??? Your wife is smart listen to her...you are lucky and you know it.

                      Feel better

                      Your friend,

                      Mary [img]/forum/images/smilies/tongue.gif[/img]
                      1FineSpineRN

                      Comment


                        #41
                        Son of a...

                        Meet Cellulitis!

                        I'm not feeling good; usually I get better after a couple days but all day, kinda sluggish, went to get ready for rehab and noticed a red blotch all over lower right leg. Reacted to the touch, too, and was hot where it was red. Squeezed my shoe on, and that foot didn't like that at all. I commenced to spasming for the next few hours, impatient, generally quivering, pale, weak.

                        Determined to get back onto the treadmill (last Thursday my last time aboard), Lynnne took one look at my foot and that was it, sci nurse came a runnin' and they poked and prodded,' hmm, that split-open heal doesn't look too good, wet, but this isn't very good, either, it looks like you have, on your skin here, cellulitis.'

                        Being a country bumpkin and still green to all the wonders of spinal cord injury, complete, I'd never heard of cellu-who, but Lynne and the others had,
                        'better get to a doctor ASAP,' to which I did, and after sitting around
                        for a couple hours, they hooked the kid up with some intra-venous hi-test whiz-bang antibiotic, cleaned and debrided, dry-bandaged, and they gave me a script for something oral and in 24 hours I'm back, got an IV in the arm for the next bag of juice.

                        I actually, and maybe some of you can relate, others who knows, but I think for the first time in this sci nightmare, I actually got scared today. I knew of a guy who got both legs chopped from infection, slowly piecing him off; and there are so many tales of horror to point to when infection enters the bone, and here I'm threatened. Didn't like the feeling; sure, I'll walk one of these days, but geez, come on, gimme both my legs, you know? How fair is that?

                        I'll be alright, as usual I'll just continue.

                        My poor wife, however,is disgusted, spent, another unexpected, unforeseen round
                        in the onging monotonous trudge that is life anywhere near we hideous, rotting plegics.

                        How can I blame her? I find us disgusting, too...

                        vgrafen
                        vgrafen

                        My book, 'Scouring the globe for a cure: a disabled man's experiences with stem cell treatment' is available at Booklocker at the following address:

                        www.booklocker.com/books/2857.html

                        A percentage of every sale goes to CareCure.

                        Comment


                          #42
                          Cellulitis

                          Hey Graf, I can only agree with you about how disgusting this SCI sh*t is. I'm also struggling with some cellulitis on my one big toe. Try an elevate your foot during the day to keep swelling & oedema to a minimum. The swelling pinches off blood vessels, prolonging the healing process.

                          And if you need a few more lyrics for our li'l song there, lemme know. I just quickly knocked these off at work the other day so they can do with a bit of polishing. And I think it needs a bridge too. I've been C5 complete these 28 years and man, I still have an almost physical need to be able to play guitar / bass like I used to. But whatthehell, maybe we can get someone like Marilyn Manson to sing it & express the full horror of our predicament 'n wake up the bourgeoisie... [img]/forum/images/smilies/cool.gif[/img]

                          And thanks for the compliment, Doc Wise. Coming from you makes it special. [img]/forum/images/smilies/biggrin.gif[/img]

                          Ben

                          Comment


                            #43
                            V OH V

                            Take your medicine....jeez ....

                            Therapeutic communication at its best....

                            Love to the wife....and you too....

                            Mary
                            1FineSpineRN

                            Comment


                              #44
                              updates

                              Mary writes, among other things, 'you will not take in too much caffeine,
                              and you will not be a pain in the ass to your wife.' Wow, nailed. How did she...

                              Man, the deafening voice of consciousness; yeah, alright, I'll TRY to cut back on the joe, but as for being a pain in the ass to my wife, I gotta get up and outta this chair to stop being a drag on her. No other alternative, just ask her...
                              ~
                              Going back later today for my third bag of antibiotics. The redness is not progressing any further up the leg, the heat is going down, swelling/edema is still insane and I still have a slight fever. Got a ten-day oral dose of antibiotics, which I'd rather not complete, but I guess I should, huh? I hate the stripping-effect those damn drugs do to you, killing your flora off. I'm constantly in that cycle, stripped-rebuild, stripped-rebuild.

                              I'm kinda status-quo, not better yet; generally grotty mood, impatient. Hopefully we stopped the progression. And yes, I am now concentrating on taking better care of myself, and closing that damn heel wound and keeping it closed, jeez! Ain't no cure gonna help if the body has rotted to uselessness.
                              ~
                              Jan, the 'spinal shock' I'm referring to is MY 'layman's diagnosis.' I meant, having had my spinal cord exposed, cleaned, buffed and growth-factored caused its own trauma, plus the effect of the 20 inch second scar, in order to remove 17 inch Harringtons, and the muscles being ripped and pulled; all this I'm recovering from, and I'm not there yet. My back is still puffy and sore; I'm getting better, but all too slowly.
                              ~
                              Jeez, I'm sick of whining about being plegic, in all its glory, and I wish to god I had other subject matter to be concerned with but my damn body all the time. Shit gets old, ya know?
                              ~
                              Better news: If I can find the right call letters, they're going to re-broadcast my stem cell/OEG/Inosine rant this weekend, tomorrow, I think. KRBS AM...jeez, I'll go dig it up and post later. But I'm going to ramp up media awareness as much as I can, including putting together a short series of public service announcements for radio which can be played anywhere, etc. Anybody who wants to get involved, has a station or 2 they'd like to get info aired, questions, whatever, lay it out here or email me and I'll get on it.

                              My redundant point: the time is NOW to get the word out on ongoing research for a cure, both here and abroad. If nobody knows what's going on, nobody's gonna care, thus how can we enlist anybody ABLE-BODIED to help us get there, there being out of these chairs?

                              Last point: listen, I'm no damn hero, but I AM active and I work at least a little every day on 'spreading the cure gospel' no matter how I feel. If I can do it, every one of you can, too, dig? I'm not saying you should be out constantly pounding media with your presence, but you must somehow get 'the word' circulated where you are able. DON'T LEAVE IT TO SOMEBODY ELSE.

                              Jeez, now I AM a pain in the ass. See how you've poisoned me, Mary?

                              I'm gonzo...

                              vgrafen
                              vgrafen

                              My book, 'Scouring the globe for a cure: a disabled man's experiences with stem cell treatment' is available at Booklocker at the following address:

                              www.booklocker.com/books/2857.html

                              A percentage of every sale goes to CareCure.

                              Comment


                                #45
                                CELLULITIS

                                V, I am sorry to here you have the disease. I have been really struggling with for the last few months myself, and have not done well. I lost the toes of my left foot in June, and on July 6, they removed my entire foot. Dr. Caldwell feels they have stopped it, and that is good but now my future is black, liek my foot. I,too, wanted to recover and walk again like normal people; I guess it won't happen now. When my husband left me, I was just coming down with it. It sounds liek you have a good wife to support you, which was different than in my case, because my husband started having affairs right after I got hurt, and was digusted like you said about my new body, which he didn't want to touch. What happend was I got a cut on my heel getting into the car and never treated it, it got infected and became stage 4, and because there was no one around to help except my kids, I didnt take good care of myself and let it go, believing that time and prayer would help, and you also said that since you haven't been through all this before, you didn't know what you were seeing and that is tru with me, I didn't recognize the inflammation and heat as being as bad as they were and I am weak anyway and lazy sometimes and by the time I finally realized I was infected, it had spread into the bone and then it has become a real battle to stop it. My heart is broken to see my foot gone, I can hardly believe it, and on top of all the other misery of this condition, too.

                                But V, I'm like you and I'm not going to be beeten by this. I don't want to die and I was scared, too, when I found out, but you got it early and you have to stay on your antibiotics and finish them, okay? Also, where on the dial is KRBS?
                                I would like to help and get copies of your information to the stations in Nevada. Please tell me if I can get a copy, etc.
                                My life from the last 4 mounths has been bad, really bad. I don't like coming here to see that we are still many years away from treatment. I wish to G-d there was something right now. I read on your column that you think spinal cord injury is a trial to test us, and that you think we choose this condition before we enter this life. It makes me kind of mad to think that may be true, that I wanted to suffer like this so I can evolve or grow. I guess in a lot of departments it makes sense, but it doesn't make me feel better or change the suffering right now. So, by the way, thank you for reporting all the things that happen to you, everybody here at rehab reads you, even Dr. Caldwell, who thinks you should go back to Brazil if you don't like American doctors. If your wife divorces you, why don't you marry me and take me with you? I used to be pretty, but I can cook and I won't get in the way!!!! Seriously, though, thanks for doing your best and keeping everyone updated. Remember to finish your meds.

                                somebody get us out of these chairs!
                                somebody get us out of these chairs!

                                Comment

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