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Thread: Its better to burn out... Than fade away...!

  1. #11
    Senior Member lynnifer's Avatar
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    Relied a bit too much on the power chair I bought last September ... also had time in bed with pressure sores on my rump ... boy is it ever tough to come back from that! I haven't yet!

    The Phase I trial of the epidural stim doesn't end until Year 2020 ... but maybe they'll speed it up if it's 100% successful? Seems safe so?
    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

  2. #12
    I'm chiming in. Polio paralyzed from high chest, but several other issues including old age. Two days ago must have pulled the one muscle I have near my shoulder blade and yesterday severe (read excruciating) pain there. Wheeler SCI hubby helped me get through the day - you must know what that's like. Terribly painful transfers, etc. He fixed dinner, etc., etc. Then in afternoon called my sister, a retired nurse, to commiserate and get advice, and OH YEAH, she had fallen the day before and was on pain pills for her knee, and barely moving around her house! She told me to jack up the pain meds - over the counter stuff for me - as I had been afraid to. Today, still in pain, but not stabbing, horrible, and was able to still painfully do transfers. I keep 2 ice packs in the freezer at all times - came in handy again.
    SCI issues are still much more serious than my Polio, I have sensation - as I said hubby is SCI para and has been through the wringer. We have helped each other through some awful stuff!
    The moral of the story: it really helps to have a friend/significant other in your life - make it happen, and love them to pieces. Also, I will renew my effort to be careful with my old muscles. I'm pretty sure this came on when I mixed flower fertilizer into two jugs of a gallon of water each, then lifted them out of the sink onto a tray on my lap, then onto a counter top where hubby could grab them - he's the 'waterer in chief' around our home.

  3. #13
    Senior Member lynnifer's Avatar
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    I have read about post polio before. Like neuro pain if I recall correctly?

    Won't be meeting anyone here! lol
    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

  4. #14
    Quote Originally Posted by lynnifer View Post
    I have read about post polio before. Like neuro pain if I recall correctly?

    Won't be meeting anyone here! lol
    Some folks with Post-Polio Syndrome have chronic pain. I've been fortunate with little pain, even through many years of strenuous exercise - but now have to be very careful with shoulders.

  5. #15
    Quote Originally Posted by lynnifer View Post
    The Phase I trial of the epidural stim doesn't end until Year 2020....
    2020? Seriously? Cripes, by the time that "game changer" is sent in to play the game will be over, the stadium empty, the season finished and the league bankrupt.


  6. #16
    Senior Member lynnifer's Avatar
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    I know ... I've now entered the phase in my life where I have to face the facts that I may not see anything in my lifetime. By that time, I'll be 35yrs in ... and 48. Multiple complications right now ... not going to make it. In retrospect, I wish I and my family had kept all the money we ever gave to research ... no one was going in this e-stim direction.

    I pee blood daily and am having trouble draining urine ... I see a urologist October 2nd. I joke with my nurse that the bladder or bowel will end me. Maybe others will - but still - what a tragedy. I never thought at age 12 that I would live my entire life this way.
    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

  7. #17
    Wow Lynnifer that's a major realization about yours and all of our eventual decline. Did not know I was going to live this type of life either. 32 years in almost 50 I have done a little with my life, mostly by accident but had to quit job due to health reasons. Now not sure I am ever going to get over those health issues but at least I am not peeing blood like you.

    Seriously next time you are going to see doctor in Oct? Guess you have a good friend in that nurse. I would panic and update my will then go the ER on a Sunday lol

    Good luck hope your bladder issue is just a minor problem and thanks for the insightful post

  8. #18
    I am a new SCI. I am parplegic. I am luckier than Lynnifer because I don't pee blood daily and do not have trouble draining urine. I am trying to get better day by day although I am not sure whethe I can recover or not. Life is not easy but I remind my self: Let face it! again and again.
    6 months ago, I never thought that I am pareplegic. I was a man with full energy and optimistic. Now everything has changed...

  9. #19
    Good attitude Alfiethompson. We got to face the cards we are dealt, or not that is up to us but its been my experience when we run and hide from the fact we have a spinal injury that is going to be with is the rest of our life the truth chases us and rears its head sometimes at the worst possible time. So I learned to try and take some of these issues head on. We were often risk takers who got a lot from our legs including a job and self worth but now I know at least in my case I had to look for new ways of doing things that made me feel good about myself, but everyone is different. I hope you continue to face it and become filled with energy and optimism again and avoid peeing blood.

  10. #20
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    Quote Originally Posted by lynnifer View Post
    I know ... I've now entered the phase in my life where I have to face the facts that I may not see anything in my lifetime. By that time, I'll be 35yrs in ... and 48. Multiple complications right now ... not going to make it. In retrospect, I wish I and my family had kept all the money we ever gave to research ... no one was going in this e-stim direction.

    I pee blood daily and am having trouble draining urine ... I see a urologist October 2nd. I joke with my nurse that the bladder or bowel will end me. Maybe others will - but still - what a tragedy. I never thought at age 12 that I would live my entire life this way.
    Have you looked into other ways to manage your bladder? I'm where you are now. I started with CIC and eventually with a external and now a foley. I've read of procedures like a mitrofanoff, Indiana pouch and others that I can't remember. Most of the time the people that have had this done are satisfied with them, at least the ones that I have read that have had it done are. I've been lucky so far as arse pressure sores go. I've only had one small one but I am less active than most that post here. I'm either in bed or in my chair. I've been able to work from home and tried to keep better cushions since my only sore. I hope everything turns around for you, Lynnifer

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