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Thread: I'm tired of this #$%&-ing pain!!!!

  1. #291
    I saw a discussion of her art, and they speculated that she had fibromyalgia also - depicted by all the nails in that painting.

    Tree of Hope has her with cuts on her back, but not at the spinal cord. I didn't find one like you're talking about either.

  2. #292
    Jon, it's so funny you should bring up Frida Kahlo and that painting. A dear friend of mine named Gail, who's an amazing artist in her own right, bought me a book about Frida back in 2002, and that portrait is the one that affected me most.


    Thank you all for your kindness and caring thoughts. It was a horrible night, but I am doing better now even though I haven't yet had any sleep.

    Ket Kit -- you honor me, sir, with the compliment. I'm thinking that maybe I should do all my writing when I'm sleep-deprived and in pain -- that post did come out very well, even though I didn't really remember what it said until coming back here hours later.

    Jon
    -- nope, no diazepam or xanax. I can just imagine my pharmacist's reaction if I presented a script for those -- as I've mentioned, he's made it quite clear that he believes I'm taking too many pain meds already. (Says he's never heard of anyone taking the levels I take, which I say doesn't surprise me given that he's a healthy guy who lives on a tiny island in the middle of nowhere.) I would love to get something for anxiety, though, as we all know far to well how stress can aggravate pain.

    swh2007 -- ice packs are my friend when the fusion pain ramps up. Thank goodness I've learned that icing that area of my back can make a huge difference in about an hour!

    Grange -- don't feel guilty complaining. You are a genius for starting this thread -- it really does help to have a place to commiserate with others who really get it.
    Last edited by thehipcrip; 01-29-2010 at 12:38 PM.
    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


  3. #293
    Junior Member
    Join Date
    Jan 2010
    Location
    Lake Oconee, GA
    Posts
    8
    Grange,
    Keep your head up! Maybe this perspective will help. Every time my head plays tricks on me that my life is nothing, I remember how fortunate I am to be alive. While, I am not in a wheelchair I can certainly attest to the fact that pain of any sort FUCKING sucks. I live in a small town in Lake Oconee GA so there aren't many people I can vent it all out. I can totally understand your frustration of just wanting to get it all out to feel better. The more you get out the better. I personally feel a sense of euphoria when I get all my feelings out. I've had to teach my brain to not bug out so much even though it plays tricks on me.

    I've had health problems since I was 8. Dx'd with scoliosis when I was 11. Now the scoliosis has mysteriously cleared up significantly. Lived in a state of confusion for most of my life. I started getting "shock pain" when I was 24ish. I'm 28 now. Last year I started taking a beta blocker to keep everything under control with my shocks & palpitations. Beta blocker cleared up a lifetime of troubles (excessive sweating, spasm cough, digestion, etc). Yes I know this looks like generalized anxiety. Unfortunately, it's not. In June my leg suddenly went out. I lost use of my leg. I was totally confused. This can't be. Is my leg really paralyzed? I learned to accept my life. I went to a neuro & he put me on Baclofen immediately. I started to be able to enjoy life. I was blown away. Wow, I'm not confused anymore. The evil shocks, funny sensations, & pain cleared up a bit. Limp eventually went away. It comes back from time to time depending on the temp. I can really empathize the spinal cord & bones sticking out. UGHHHHH! The hotter it gets the more my spine burns. Spinal burning is the freaking DEVIL. That is the only aspect that really really bothers me. The spasms & spasticity were the main parts that cleared up. I began to realize how lucky I really am. I escaped what used to be a death sentence. I had Acute Lymphoblstic Leukemia when I was 8. Not to mention, I also was recently diagnosed with Autism. I get sensory overload that comes with more pain. It has taken me months of training my brain to recognize that I am one of the fortunate ones...

    My heart goes out to everyone of you dealing with an SCI. You guys are the true warriors out there. I see people like yourselves fighting & you guys all inspire me to keep fighting. xo

  4. #294
    Wow. I do not pop in here often, but tonight I am once again laying in bed in complete pain. Trying to explain it is so difficult. I wish I could simply stand up and begin smashing every single thing around me. Oxycodone does nothing for this *pain.* I take oxy for the regular, tangible pain. Only problem is that I am one of the unlucky few that gets a cocaine like high from oxy, plus it will turn my poop into a solid cork stopper if I were to take it all day.

    I have come very close to just ending it. I actually sat for a week and did tons of research. With all who have failed, I know the worst case of surviving a botch. And then, I figured it out. Nice capsule or some kool-aid, trip to teh beach, roll into the surf a little at sun down, gulp, gulp, smile. Still enough of me to feed some fish.

    I have people that love me, and it hurts to tell them that they are not enough to counter-balance this hell. I used to be a VERY happy musician and beach bumette. Traveled all over the country, met hundreds of thousands of people. Now, I will simply sit in front of my computer, and stare at a guitar or piano and just cry. On the plus side, a REALLY good cry is usually followed by a nap of 45-50 mins. Here in Oregon, we have medical marijuana, which is incredible. But, I do not want to simply be stoned all day (pet rock!), nor do I want to have the Feds in my life.

    THE FUCKING PAIN IS STEALING MY LIFE. I no longer live, but rather simply sit around trying to survive. No good distractions. No sex life. Nothing but watching part of the world have the ability to do stuff, or part of it dying. (sigh) Wish it were legal to run over Segue users with my wheelchair... lazy buggerfuqs.

    Whew! That does feel better! I am actually laughing now. A little puff puff give, and maybe I will be rewarded with less pain and a few hours of sleep before I have to pee again...
    nikki
    T6 complete since Oct, 2001
    TiLite ZRa, Spinergy LX 24", Shox Firm tires, 3" volcanic glare rollerblade wheels for casters

  5. #295
    Nikki, good to see you pop in for a visit, although I know you hate the reason that brings you here. I sincerely wish you the best in finding some degree of relief from the pain. People offer various little suggestions from time to time, so I encourage you to so some more reading here, at the very least you'll see that you're not alone. Unfortunately, there are plenty of people who can relate, and you're free to come here to rant and find support.

  6. #296

    Holy Crxp Batman

    worst day in a long time, somebody restarted the chainsaw in my back, spasticity feels like it will tear my leg right off, neuropain with th sciatic on fire and spasms to boot. wtf!

    AAARRRGGGHHHHH
    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

  7. #297
    @%$!ing starting working early this morning, got busy and forgot to take my meds. Now my fricking legs are on fire, I can't concentrate and I have a ton of shit to do. ARGH.

  8. #298
    Nikki

    "Wish it were legal to run over Segue users with my wheelchair"

    Thanks for one of the funniest lines ever. Would you also be willing to run over people who tell me how lucky I am or how good I look?

    My gosh, if you don't like constipation, that would mean you aren't just a drug seeker--that there is actually something wrong with you, that there is actually something about PAIN which the general public does not in detail comprehend. Naw, if it were so, Twitter and Facebook would have brought it out by now. Everything is community wisdom nowadays. No individual truths anymore.

    No one knows better the truth of what you are saying than those with central pain. I choose sedation with something other than oxy so defecation can procede. Did you ever think you would be having a conversation like this. I AM cool even though I have brought the topic up, and VERY lucky.

    It doesn't help to think back, but sometimes you just can't help it. I never got to be a beach bumette but I am glad you did. We aren't cool enough to have Seque's here except on college campuses where they do rank above wheelchairs. They are taking care of the earth's environment it would seem, while we have no clue what we are doing. It's like trying to talk to someone who is texting. Shut up. I am TEXTING! If you are in a wheelchair, it is also important to yield to the motorized wheelchairs in Target, which nine times out of ten go to people who are very obese. A truly disabled person usually will not abandon their wheelchair to maneuver into them. Something about the technology trumps everything else.


    .
    Last edited by dejerine; 01-29-2010 at 11:57 PM.

  9. #299
    Senior Member
    Join Date
    Dec 2009
    Location
    Florida, USA
    Posts
    2,175
    For the first year after my sci, about 1/2 of my inner thoughts involved the fundamental question of how I was going to poop in time to avoid another blocked bowel. At least this subject sets the stage for a lot of good, but shitty, jokes.

  10. #300
    Quote Originally Posted by nikki-k View Post
    Wow. I do not pop in here often, but tonight I am once again laying in bed in complete pain. Trying to explain it is so difficult. I wish I could simply stand up and begin smashing every single thing around me. Oxycodone does nothing for this *pain.* I take oxy for the regular, tangible pain. Only problem is that I am one of the unlucky few that gets a cocaine like high from oxy, plus it will turn my poop into a solid cork stopper if I were to take it all day.

    I have come very close to just ending it. I actually sat for a week and did tons of research. With all who have failed, I know the worst case of surviving a botch. And then, I figured it out. Nice capsule or some kool-aid, trip to teh beach, roll into the surf a little at sun down, gulp, gulp, smile. Still enough of me to feed some fish.

    I have people that love me, and it hurts to tell them that they are not enough to counter-balance this hell. I used to be a VERY happy musician and beach bumette. Traveled all over the country, met hundreds of thousands of people. Now, I will simply sit in front of my computer, and stare at a guitar or piano and just cry. On the plus side, a REALLY good cry is usually followed by a nap of 45-50 mins. Here in Oregon, we have medical marijuana, which is incredible. But, I do not want to simply be stoned all day (pet rock!), nor do I want to have the Feds in my life.

    THE FUCKING PAIN IS STEALING MY LIFE. I no longer live, but rather simply sit around trying to survive. No good distractions. No sex life. Nothing but watching part of the world have the ability to do stuff, or part of it dying. (sigh) Wish it were legal to run over Segue users with my wheelchair... lazy buggerfuqs.

    Whew! That does feel better! I am actually laughing now. A little puff puff give, and maybe I will be rewarded with less pain and a few hours of sleep before I have to pee again...
    I'm sorry you are having such a rough time Nikki.

    Some people respond very differently to different opioids. Have you considered asking your doctor to try a different one? Maybe something long-lasting like a fentanyl patch, controlled-release morphine (forgot the name just now) or even methadone? Perhaps you would tolerate that better.

    As to the constipation, there are bowel regimens that can help (for ex. senna, colace, and/or mirilax). Also, there is a new drug called Relistor that specifically reverses opiate induced constipation.

    I hope your doctor can explore some options with you.
    Last edited by TAM63; 01-30-2010 at 09:37 AM. Reason: goofed up quote

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