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

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    #31
    KyleP2112: I agree with everything you wrote. My injury is C5-6 and was caused by a neurosurgeon while he was repairing a herniated disc. He hit my spinal cord and the nerves were 'dead' for 20 minutes. I had to learn to reuse the right side of my body and now have a balance problem and no feeling in my right arm and hand. My legs are a huge problem due to neuropathy. And, I know the tingle feeling well. I keep thinking I will wake up one day and I will be normal again; however, it's been six plus years so I believe I am 'dreaming.'

    I am new to this forum, but find it to be extremely helpful. Nice to know others who share the same problems. I have been blogging about my experience, but I am ready to now reach out to see what others are doing.

    Best of luck to you and would love to know any therapies, medications you may have found that worked for you. Thanks so much!
    Please donate a dollar a day at http://justadollarplease.org.
    Copy and paste this message to the bottom of your signature.

    Thanks!

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      #32
      Hi Jon,
      Hope you can enjoy some of the fresh powder falling in the Sierra’s. I run into your friend Mark occasionally and he lights up when he mentions your name. Remember the evening in Yosemite when Mark’s climbing partner Mike Corbett told some great stories about their historic climb. You have inspired so many and deserve peace. Keep up the good fight.
      In the dime stores and bus stations, people talk of situations, read books, repeat quotations, draw conclusions on the wall. ......Bob Dylan

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        #33
        mswestfall -

        Welcome to the forum. It's good to be able to relate to someone. Where have you been blogging? Sounds like you've had lots of challenges since your injury... However a spinal cord injury happens it's life changing to say the least.
        I don't know about others but I go back n forth over what's harder to "get used to" after SCI....paralysis or bad chronic neurogenic pain.
        C4/5 incomplete, 17 years since injury

        "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

        "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

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          #34
          Know what you mean! I'm coming up on my 10 years with the pain anniversary in Oct.

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            #35
            I saw the post title and came in to comment regarding leap days and saw that I was beaten to it. Anyhow, knowing you're not alone when SCI related nerve pain helps about as much as an aspirin, but at least this site gives you a chance to vent. Almost 22 years of pain here and to be honest as much as it hurts, and it hurts like hell, it could always be worse. Not sure how, but that thought tends to help... along with a healthy dose of humor. Take it easy, if you can.

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              #36
              Arndog, you are such a help to all of us on this site. Your post is what it is...an honest view of your experience. If it were all sugar, the rest of us would think we were crazy. Yes, its tough but you manage to wring as much positive out of your days as possible. I admire that. I wish you could get to a comfortable existence. I wish that for all of us.

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                #37
                Arndog, You are a huge inspiration for me and I'm sure for many others on this forum. The things that you have accomplished against the greatest of odds are almost unbelievable. Thank you.
                C1/C2 walking quad, SCI from 4/2010

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                  #38
                  mswestfall,

                  I am sorry you have this. I have sent you a private message which I would appreciate your reading.

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                    #39
                    Jon, my admiration for you grows with every post you make, and this post is a shining example as to why: your gift for speaking frankly without whining about the harsh reality of trying to eek out enough quality of living when doing battle every day with constant, severe pain on top of the never-ending struggles that go with being a crip.

                    Your experiences make so many of us both feel less isolated by the 'pain beyond pain' and give us encouragement to keep going. As strange as this may sound, I don't know how you do it. I'm not sure I could manage as well as you do if I had been forced to endure so many surgeries, let alone having to do so under the veil of central pain.

                    I hate that you have to deal with so much, arndog. But I'm so thankful that you've chosen to share yourself and your experiences with us. In doing so, you change lives. I just wish even a small portion of the way you help us would come back to you in the form of relief from the hell of living with central pain.

                    It truly is an honor to know you.
                    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

                    ~Julius Caesar

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                      #40
                      Originally posted by Scott C4/5 View Post
                      I saw the post title and came in to comment regarding leap days and saw that I was beaten to it. Anyhow, knowing you're not alone when SCI related nerve pain helps about as much as an aspirin, but at least this site gives you a chance to vent. Almost 22 years of pain here and to be honest as much as it hurts, and it hurts like hell, it could always be worse. Not sure how, but that thought tends to help... along with a healthy dose of humor. Take it easy, if you can.

                      AMEN brother!!! Your so right about things can always be worse!!

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                        #41
                        Sorry I missed your anniversary Jon. It's good to know that you, Dej, THC, Cass, Bill, Alan, DD, Lynnifer, and I'm sure I've missed a few regulars.....are always here when needed.

                        Living with CP isn't easy. It's a day to day struggle for most of us. Usually the nights being the worst. Hard on us....harder on families.....and I've yet to figure out how to have a life. We're all the same...but different. None of us have quite the same pain in all the same places, we just know it's evil.

                        I admire how you're able to get on with things Jon. Keep it up and take care of yourself. My anniversary isn't far behind yours, but I don't really want to think about it. Took me a few years just to realize I would'nt ever really get well. Everytime they did a new procedure, or changed meds, I was sure this was the one that cure me!

                        May the next ten years be easier than the last ten!

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                          #42
                          Originally posted by t8burst View Post
                          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.
                          Sorry, missed this thread, T8 couldn't have said it better, Arndog, you've been a massive help to me and everyone else suffering with this seemingly incurable pain that no-one seems to understand. I hope for all of us that an effective treatment will be around the corner.

                          Thanks again to you and all the others who devote their time to helping others get through the hard times.
                          T11 Asia A after near-fatal bike crash.. Just happy to still be here

                          No, I didn't loose my mind... It got scared and ran away!!

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                            #43
                            I know just how you feel...much of the challenge w/ a spinal cord injury is psychological...there's no doubt about it. Speaking of anniversaries. I'm not look forward to this June 4th... It will mark 17 years, 6,205 days, 148,920 hours, 8,935,200 seconds since my injury happened.

                            The part that's getting in my head is...I'm 34 now, so I've spent half of my life w/ a spinal cord injury. When I first got hurt I thought there would be a "cure" for this injury, that really felt like an unending, waking nightmare, by the time I reached my 30's...

                            As you all know a "cure" hasn't happened yet.
                            C4/5 incomplete, 17 years since injury

                            "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

                            "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

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                              #44
                              now it's my anniversary. approximately 9490 days for me

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