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I am losing the battle one day at a time.



  • I understand and I left that card on the table.  I have never strayed but either has she.  I'm surprised we made it through.  Times got really bad between us.  For five years she has stood by my side and fought for me.  My pain almost had me convinced I didn't deserve her or I didn't deserve to be "here"because I thought I was a burden to others.  The pain got so bad I was put in an institution for putting my hands on my mom and wife and even myself .... 
    Ankylosing spondylitis, moderate lumbar spinal stenosis, spondylolthesis L5- S1, 5mm disc protrusions T6- 9 with minimal cord compression, cerebral palsy of the right side

    PLIF fusion L5- S1 with decompression and hardware Dec 7th 2016
  • armelindarmelind South TexasPosts: 131
    I am not in that frame of mind at all. I dont feel that I am being a burden to others. I just cant imagine me living a "good" life hurting like a I do or more. Why would I want to continue "trying" if there is never a good day? Its not like its temporary... its forever. I have already had the best day I will ever have again. I am saying this because in 4 yrs I can count on one hand the good days I had where pain didn't make me sick to my stomach or make me so tired that I wanted to go to bed at 3pm. The last time was about a year & a half ago. So they are getting fewer and far between.
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  • Alcohol and opiates.
    It was 151 rum and 10\500s some nites to get started..not by the pain.
    I metabolize meds etc amazingly fast
    I wake up in all the proceedures

    At times morphine was\is worthless.
    I have no relief..but get dizzy

    Foget sleeping..but i handle long term,sleeplessness better than most
    William Garza
    Spine-Health Mod

    Welcome to Spine-Health

  • armelindarmelind South TexasPosts: 131
    I had this thing all written out about my this and that.... and deleted it. This forum isnt about that.
  • armelindarmelind South TexasPosts: 131
    Well, it is January 4th 2017. It has been 1 month and 2 days since I had the neural stimulator implanted. So far the results are minimal. The surgery has caused a change. Prior to the surgery, I would get relief of a flare up by sitting and resting. Now I have to constantly change positions. If I stay in any position standing or sitting longer than a few minutes, the intensity will increase in my lower back. For what the last surgery provided, it isn't enough. I would say in some ways it made my condition worse. I am noticing issues in my comfort and pain levels that I never had before and now they are there. But in some small ways, this last surgery has turned back time in my pain levels by about 8 months.

    As time goes by my pain levels creep up every few months. By November of 2016, I was barely able to handle day to day existence. The pain levels had gone to a level that I was wishing that I could quit work and lay in bed and sleep all day everyday. The only problem is that I wouldn't realistically sleep, and laying down all day isn't really anything that helps me feel better. I just didn't want to be at work or be around anyone. But since the surgery, I am a shade bit better, I guess. I dont have the overwhelming dread and ugliness down to the bone like I did in November. But it doesn't feel far off. Its just around the corner.

    The stimulator seemed to work better during the trial. I felt that my range of motion got better and my mood was boosted. All that in just a week back in August 2016 ( I think, it might have been earlier in the year but I cant remember). My surgery took place in early December 2016 and by that time my daily pain levels had ratcheted up a few levels and so I am thinking its possible that maybe the neural stimulator might not be as effective as it would have been in the past.

    What does that mean for me in the future? I am not really doing any better than presurgery. I still don't do anything socially. I don't go anywhere. My wife and I are still strangers in the same house. I am pretty much a hermit. I don't do anything that doesn't absolutely need to be done. I stopped shaving because it is more effort than I want to give. I don't shower as much as I used to because of the same cost in effort. There is so much that needs to be done but I am always thinking, I will do it when I feel a little better but that day never comes. I just end up doing it and wishing I would have done it sooner because most likely while I was waiting to feel better, my pain ratcheted up another level, and now I feel worse than what I did when I said I will wait to do it. It has been a downward spiral on a slippery slope. I never get better but on occasion, I find that I haven't dipped much worse either.

    I don't know what this year has in store for me but I really hope its better than last year.... and no I am not talking about the whining on FB about how everyone is crying about Trump or dead celebrities. I don't care about that junk. I just want a life that's worth living. And today I don't have it. 

    And no that isnt a threat, its just an observation.
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  • itsautonomicitsautonomic LouisianaPosts: 2,561
     I just want a life that's worth living. And today I don't have it. 

    Hopefully we all get that one of these days.  That is a fear of mine also, I am considering the trial, but so many have said the implantation results did not match the trial.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • memerainboltmemerainbolt IndianaPosts: 6,473
    Armelind, as I was reading your last post, I keep saying, yep!! sounds like me, been through that. It's not fun.
    It's not fun straddling either a life of nothing and in a dark hole all the time or keep on trying and making yourself think positive.
    I tried the SCS and it didn't work for me. I had it removed and it was so disappointing. I went into that dark hole. Physically I was in a lot of pain but I was worse mentally. I used the excuse of being in pain to basically stay in my room in bed all the time. I did not want to see anyone or go anywhere. Everything my husband did or said was wrong. And I've probably told you all of this before, sorry if I'm repeating, but it saddens me when I hear of someone going through this. I just wanted to let you know that I totally understand.
    It takes a lot of mental fighting to go through what we do, and it's exhausting. I think that's why sometimes we just get to a point of I've had enough, I don't want to do anything!!
    Do you have a rep from the neural stimulator that is working with you or that you can call? If you do, maybe you can discuss with him what's going on. I had a rep with my SCS that called almost every day.
    We were all hoping that you were going to get some level of pain control. But let's keep hoping, it's not over yet.
    Veritas-Health Forum Moderator
    Please read my  Medical History
  • armelindarmelind South TexasPosts: 131

    I do have a rep. I don't talk to them unless I have a question about the device. What are they going to say???

    "At your next appointment we will make adjustments to your settings"? Is that it? If I know that, why do I need to contact them?

    Its the same as feeling like you are gonna break in half because of pain but you don't go to the ER because you probably are on stronger pain meds than what they will give you. Not to mention, its a 3 hr wait or more and money out of your pocket. I would rather be home.

    What do you do? How do you escape from your body when all it does is give you pain? Everything causes more pain. But my biggest fear is creating more pain that doesn't go away. I am truly thinking that maybe if I do some strength training or at least try to get into better shape maybe I can be healthier and that will help my pain. But there is no proof that it wont cause more damage and more pain. Like I have said many times, I have yet to find something that reduces my pain. I can only do stuff that doesn't intensify it. And even that has been reduced with my stimulator. I am afraid to let them touch me again.

    I cant remember my last "good" day. I don't have them anymore. Of course there are days when I will talk with some people and have a good laugh or watch a funny movie. But there are no more days that I "feel" good. They are gone.

    I had a good few days maybe a year and a half ago, I wrote about it on here... that was it. That was the last time. How do you have good days when all of them are filled with hopeless pain? How do you escape the pain long enough to have a good day? I haven't figured that out. I am not aware that I can do that. In the time since I had my last good day, I have tried to keep my mind free and good spirits but at the end of the day I ask myself if it was good or bad. And every day has not been good. I am not asking for pain free days. I am asking for days that I don't feel bad or hopeless or defeated.

    I don't wake up with a dark cloud over my head saying "today will suck." I wait until the end of the day. The answer is always the same.
  •  I recently had scs surgery over 2 months ago. It's a long hard road as I expected. This was because of having paddle leads and laminectomy which is a more difficult recovery than percutaneous leads. I understand your pain and frustration, along with the monotony it brings. So much I've put on hold and I also wonder and hope that it will improve things for me. Wintertime is also hard since it aggravates our pain. I have no answers as to make life better. All I can do is distract myself as best I can with movies, books, surfing the web, etc. It gets old, I understand. I try to drown out my fears each day..silence is my main enemy. I'm glad I have this outlet here where I can turn my attention to others' problems and find comfort/advice as well. Everyone pretty much covered everything that could be said. It's still early in the recovery process for you and I hope that one day this new endeavor will be successful in some way. 
    Ol' Spiney..Micro-D L4-L5, TLIF L4-S1 -post op central HNP L4-S1,stenosis, retrolisthesis, EF, facet arthropathy, lumbar& cervical DDD. FBSS- Medtronic pain pump & SCS
  • armelindarmelind South TexasPosts: 131

    It doesn't feel early in the recovery process. It feels like "same stuff different day". All avenues have been tested.... all have failed. My only real fear is....is this it? If my best days are have been had, and what I have dealt with everyday for the last several years is what I can expect from now on, I am not sure I can think of a reason to try to be a good sport anymore. I think the best part of life is not knowing what is around the corner. But today, as with all the days of my last few years, I have known what to expect. Its not fun, its not great, it is not pleasant and I am not having a good time and I don't see how a mental health doctor can convince me to think differently. Why would I think that everything is ok even though I am miserable? Do they help me to think that I don't care that I feel like crap all day and every day? Do they tell me that I should have hope? I have done everything I have been asked to do and my reward is no relief and increased pain. But hey....I can still work in pain, and walk thru the store in pain and argue with my wife in pain and take medication to sleep while in pain. And the opioids that barely help.... what does my pain specialist prescribe me when the methadone isn't enough?
    Its all fear. Its all about the unknown and what I do know. I don't like it. I don't want it, but it is what I have and as the title of this thread says, I am losing the battle one day at a time. Nothing has changed for the better. It has only gotten worse.
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