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10th year anniversary of SCI - 3,650 consecutive days of pain

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    10th year anniversary of SCI - 3,650 consecutive days of pain

    Yesterday, I celebrated my 10th year anniversary of SCI. I took it hard for one reason. It symbolized and brought me to the realization that there has been so much pain, daily pain that makes getting through each 24 hrs a huge challenge/ a recurrent daymare. Not one in 3650 days has ended well and peacefully. It has been a repeated Ground Hog day, full on crisis ending each evening with the hope that sleep, with the aid of ambien, will overcome my crescendo of suffering quickly and the dawn will bring new hope. I start pushing that large Sisyphean boulder up the hill the next day. This is the baseline which has been punctuated by 12 substantial physical setbacks with 3 revision spine surgeries, months in the hospital taking years to recover from and hallmarked with six abdominal laparotomies from small bowel intestinal obstruction and lysis of adhesions losing all physical conditioning and leaving the hospital on high level of opiates to withdraw from. Then the Sisyphean climb up the conditioning ladder only to fall again. These are have been the exclamation points on a baseline of chronic daily neuropathic pain that still defies control despite all the talk and advice I have offered to others here. That I do because it helps me to help other people – it is self serving. I am taking my moderator hat off tonight and just letting the world know what it has been like for me and I know that many here are in the same boat. I have nothing to hide, the past 3,650 days have brought a great amount of humility to my attitude.
    Although there have been no fully good days, there have been good moments – while enjoying family, nordic sitskiing, monskiing, handcycling ,now working full time at SSDI, watching a sunrise, and of course music - western classical music from 1750 to 1945.

    There have been some good moments, but in summation I am so beat down from the chronic pain and all the meds to manage it that I am not in a celebratory mood.

    I apologize for the downer but realistic post and I hope this is rare for me. Maybe I will write something like this on my 20th anniversary. I am sorry if I am spoiling the hope that newer injuries may have – you may have a different experience. I don’t need condolences, and I am grateful for the people I believe I know here at CC (even though all is uncertain on the Internet) who have helped me retain my sanity and humanity.

    #2
    I am sorry for your pain. You can take some solace in the fact you help a lot of us deal with ours with your works and example. Here is to those moments that keep us going. Cheers.

    Comment


      #3
      It does get easier to accept and physically deal with for a while .. until I hit 35yrs old (22yrs of paralysis by then). It gets more difficult each year. I will hit 27yrs of paralysis out of 39yrs of life by the summer.

      Can't sugar coat it and you haven't. It's refreshing, FOR ME, to read what I feel as well. I endeavour the same motivations as you for sticking around CareCure. Plus I get so much back - like your post.

      You motivate me to keep going.

      I know PLENTY around here that will say exactly what you have and it's only your tenth anniversary ... kudos to you for hanging on and hanging in.

      Hope you treated yourself. The rounder numbers - 10, 15, 20, 25 and I expect 30 to be harder to deal than the others.
      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

      T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

      Comment


        #4
        Let me second the posts of T8burst and lynnifer. I have been having some of the same feelings as I approach my 5th year anniversary and also as I watch my 81 year old father try to recover from his C 5/6 cord compression due to spinal stenosis.

        To some extent now are lives are being defined by our ability to persevere and adapt and the example we set for those close to us. I know you are setting a great example for your child (son, I think) and that he (or she) will greatly benefit from your example.
        2012 SCINetUSA Clinical Trial Support Squad Member
        Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

        Comment


          #5
          I just entered this game so all I can say is that the short time I've been here your posts have always inspired and motivated me. I think your a great example on how to battle this crap head on and get the most you can out of life. Thanks

          Comment


            #6
            I hear you arndog. I have nothing but admiration and respect for all of you who are managing to hang in there for years.
            You will find a guide to preserving shoulder function @
            http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

            See my personal webpage @
            http://cccforum55.freehostia.com/

            Comment


              #7
              Thank you for helping me.


              For you....

              http://www.youtube.com/watch?feature...unzGnyLjA#t=0s


              And if you give a passionate Russian cellist Bach to play, it can sound like it was written after 1750.....

              http://www.youtube.com/watch?list=PL...FrEJK7oAg#t=0s


              I'm so sorry you are suffering.
              Last edited by hlh; 23 Feb 2012, 11:23 PM.

              Comment


                #8
                Your post is not a downer arndog. Sugarcoating is overrated.
                I have read your very sincere and well articulated posts to my husband in the past and it helps him to know he is not crazy with the puzzling and bizzare pain.
                Even though I never doubt him, hearing from others helps me advocate for him and know we are doing everything we can.
                I'm glad you are here and telling it like it is, yet also living your life very fully.

                Comment


                  #9
                  Hang in there Jon. I'm sincerely sorry for the pain you suffer, but grateful for your contributions here.

                  Comment


                    #10
                    Thanks for your kind remarks, Lynnifer - you are coming up to a big anniversary of 30 years and with all that you have been through, you inspire me. You are a survivor with great strength and will.
                    Thanks HLH for Op 131 - to beautiful to believe that someone could write that. Thank you Ludwig for enriching my life - no one speaks to me as his work does.
                    Very soulful rendition of the Bach cello suite.
                    I am excited that this upcoming Saturday, I am going to hear Dimitri Adapine play all 5 Beethoven Cello Sonatas in one concert.
                    Before I die, I need to hear the Beethoven String Quartet cycle maybe over 3 days... - does anyone do this anymore?
                    HLH - thanks for your friendship and best to your dad.

                    SWH, LindaT, Dave, SCI for 55 ,lonecoaster- thanks for your kind thoughts.
                    I cringe to post any non hopeful post but I didn't embellish or exaggerate my story and I called it like it is. It is what it is and I keep going at it. I know I am incomplete and I can get out of my wheelchair and use crutches and some can not do this. But the chronic pain is brutal. It is just the idea of 10 years of this that gets me.
                    I got my whinefest out of my system without out the added calories of drinking wine.

                    Comment


                      #11
                      I'm 38 yrs post Jon; your wisdom and toughness even inspires we "old Guys," Stay strong, I know what it's like to not "complain" for the fact it may deter the newbies.

                      No whinefest at all, you stated in a straightforward how so many of us feel. You can obviously see how much we need each other here. Your post showed me that when I have the "whinefest period" coming on, it'll be okay to spout it off here.

                      Comment


                        #12
                        I really appreciate your perspective arndog. It's good stuff, so keep sharing!

                        Comment


                          #13
                          Arndog, like so many others here, I enjoy reading your posts, especially when you go long form (though I regret the unfortunate source of your inspiration). For all of your unendurable pain, your honesty and clarity of thought shines as brightly as ever. Feel free to doff your moderator's cap whenever you like.

                          I'm 28 years post (I've been announcing that a lot recently -- has everyone noticed how number conscious we are when it comes to our injuries?) and am fortunate to have been spared the intense pain experienced by so many here. I'm thankful for this not so small favor.
                          stephen@bike-on.com

                          Comment


                            #14
                            hey dog, closing in on forget 8 or 9 years. No matter, i cannot remember a day I have not been in agony, really can;t even dream it anymore.

                            I appreciate your candor, truly do. Sorry you r state though.

                            I had started to wonder if you were actually superman in your ability to cope. I'm 9 spinal procedures and about 14 other ortho rebuilds from my injuries in Nam and stupidity and still fighting, doing absurd things i likely shouldn't through encouragement often from you.

                            I've written little lately as i'm in a bad way after saying I had come to terms and was in a good place. Even a good place for us is bad. I like to think i'm not the "shadow walker" I was, and you have done much for me and I walk in the sun and see the life around me.

                            But at the end of the day, even though I have found true acceptance, the dark angles still becon the sirens sing and call, and every day with CP is torture.

                            Cass, my God, Alan, Dej, Becky. we ride a dark line but we all still look for the light. No one has mentioned Oz in a long time and I read his book a few times and see myself and other treading the same path but taking a different direction when reaching that fork that took him to his end.

                            God bless us all and keep us close to him. Bless our families who smile with us, and weep, literally, for us when we can't see it.

                            Bless Dog this day and let him find a measure of peace.

                            Finally, find two tickets, the immortal Ludwig Van was the defining composer that led me to music before life made its own plan.

                            Many paths arn, and you walk a difficult one with grace. Courage.

                            warmly,

                            ket
                            Last edited by bollefen; 24 Feb 2012, 9:47 AM. Reason: cause i typle like crap
                            Kindly,

                            The Ketamine Kitty

                            All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

                            Next time I die make sure I'm gone,
                            don't leave 'em nothing to work on JT

                            And I ain't nothin but a dream JM

                            Comment


                              #15
                              Originally posted by arndog View Post
                              Yesterday, I celebrated my 10th year anniversary of SCI. I took it hard for one reason. It symbolized and brought me to the realization that there has been so much pain, daily pain that makes getting through each 24 hrs a huge challenge/ a recurrent daymare. Not one in 3650 days has ended well and peacefully. It has been a repeated Ground Hog day, full on crisis ending each evening with the hope that sleep, with the aid of ambien, will overcome my crescendo of suffering quickly and the dawn will bring new hope. I start pushing that large Sisyphean boulder up the hill the next day. This is the baseline which has been punctuated by 12 substantial physical setbacks with 3 revision spine surgeries, months in the hospital taking years to recover from and hallmarked with six abdominal laparotomies from small bowel intestinal obstruction and lysis of adhesions losing all physical conditioning and leaving the hospital on high level of opiates to withdraw from. Then the Sisyphean climb up the conditioning ladder only to fall again. These are have been the exclamation points on a baseline of chronic daily neuropathic pain that still defies control despite all the talk and advice I have offered to others here. That I do because it helps me to help other people – it is self serving. I am taking my moderator hat off tonight and just letting the world know what it has been like for me and I know that many here are in the same boat. I have nothing to hide, the past 3,650 days have brought a great amount of humility to my attitude.
                              Although there have been no fully good days, there have been good moments – while enjoying family, nordic sitskiing, monskiing, handcycling ,now working full time at SSDI, watching a sunrise, and of course music - western classical music from 1750 to 1945.

                              There have been some good moments, but in summation I am so beat down from the chronic pain and all the meds to manage it that I am not in a celebratory mood.

                              I apologize for the downer but realistic post and I hope this is rare for me. Maybe I will write something like this on my 20th anniversary. I am sorry if I am spoiling the hope that newer injuries may have – you may have a different experience. I don’t need condolences, and I am grateful for the people I believe I know here at CC (even though all is uncertain on the Internet) who have helped me retain my sanity and humanity.
                              I think that you may need to recalculate your number of days due to leap years.

                              Comment

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