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

  1. #641
    Thanks Grange.......those late night hours are always the worst. This was the second week that I did'nt let Nathan stay.......he does'nt understand it. But, as long as I'm having rough times, he needs to just visit me. I told him when I start to feel better again, if he wants to spend some Friday nights, it will be okay. But not when I feel like this. I told him to go swimming for me and have a good time. I think he's okay with it.

    This heat is making things so much harder......I'll be so glad when it cools off! Today was in the low 90's, high humidity, and I don't know what the heat index was...I just know I could'nt breathe outside! This is the second summer in a row I've been stuck in the house! I was in here so much, I think it helped me get the vitamin D def.!

    I appreciate your words Grange....I try to not give up hope....but, you know how hard it can be going through some of these nights. I got back to working on my postcards. But now, I think I've hit everyone on my list for this month, and will need to buy new supplies again. If congress lets me have my ssdi check! lol I think I'm single handedly trying to keep our post offices going! lol It always helps to vent here. I dont have to explain anything......

  2. #642
    Quote Originally Posted by quad79 View Post
    I came here to curse the fire the summer heat has raging in my legs. If you don't like cursing, that's one thing, but don't throw somebody under the bus b/c they do. I thank God for everything I have & through him, I have strength. Quite frankly though, you aren't "supposed" to ASK God for things, that's not the intent of praying. You ask him for strength& the fight to get through bad times. I think one would be in "fantasyland" to think pain is something they shouldn't curse or despise. The hate is directed towards the pain, not God. Please post in this thread if you hate pain. If you don't want to curse just please don't judge those of us that use it for coping & venting.
    I always smile when anyone tells me I should pray to god or thank him for this or that. If I can't blame this "god" people talk about for the bad things that happen in this world, why would I think I should thank this so called "god" for good things. Just live your life like you are supposed to, do your best, and know that bad things happen to good people. For ME, there is no such thing as a god. I have no problem with people if they do, but I do have a problem if they tell ME that I should believe and that I should thank god or pray or whatever.
    And if you don't like it when people vent about their pain here, too bad. Everyone here who has pain, does what they can to deal with it, and when the thread heading has ^)%&% IN it, guess what you may find in it?

  3. #643
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    Agree, Agree, Agree.People tell me "you were blessed by the lord to live through that accident" I just grin and shake my broken neck and head,and change the subject.
    Gunnslinger8


    BTW. OUCH! my C2-C3 hurts every time they say that.
    Last edited by Gunnslinger8; 08-14-2011 at 03:02 PM.

  4. #644
    Quote Originally Posted by Grange View Post
    Q79.... It is amazing how many times people say, "How can you hurt if you are paralyzed?" I probably would have said something like that before I became paralyzed. It is the double edged sword isn't it? AND it sucks!!!

    By the way... I am complete and I still hurt so I can only assume that your pain is getting worse and worse the less complete you become!
    Man, to read this is troubling: "...so I can only assume that your pain is getting worse and worse the less complete you become!"

    Swear from me words first then, this is so true! For the past 10 years I have had more movement in my legs, by using my quads I can wiggle my right leg, and then a week ago while being worked on again by another therapist I found that I could move my left leg the same way. This movement BTW is tiny, inconsequential, but more "less complete" brings on more pain, yes!

    Yesterday I had about 60 seconds of 10! First time ever and wasn't sure if I could take it! It passed and went down to the normal 5/4. I took 3 Oxycodone 15's one Diazapam 10mg, and put on another fentynal Patch (50).Hoping that the pain would not return with such terror. I has not returned but now I am expecting it :-[(

    I fear the day when the 8/9/10 comes and stays!

    What's God have to do with it?

    I agree withGunnslinger8 - Stevezi - quad79
    Gary Is = L-1 Para for 34 years.....................
    ~~~~~~~~~~

  5. #645
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    "I fear the day when the 8/9/10 comes and stays!" I know that's right!I fear the 10,because I'm at 8 and 9 now!
    GS8

  6. #646
    Quote Originally Posted by Gunnslinger8 View Post
    "I fear the day when the 8/9/10 comes and stays!" I know that's right!I fear the 10,because I'm at 8 and 9 now!
    GS8
    holy shit man! How do you stand it? That's extreme!
    Gary Is = L-1 Para for 34 years.....................
    ~~~~~~~~~~

  7. #647
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    LOL I wasn't expecting that response.Garyis we have no choise what are body going to say when we wake up.It's hard to say you get use to it,but you kinda do.The meds dull the pain,but I'm on so much it takes more and more through the years.There have been times when I wished I didn't survive.I feel it's like a battle.You against the pain,but the pain is whole lot bigger and meaner than me,so the conclusion is me in the fetal position all beat up.You know what it's like.Pain is a bitch that nags,makes you regret when you don't pay enough attention to it,and hits you upside the head with a frying pan over and over again.I try not to let it consume me.I hope you don't have to deal with that level constantly Garyis.
    Gunnslinger8


    Garyis,my friends read your response,and laughed their ass off like I did.
    Not at you,but the words.
    Last edited by Gunnslinger8; 08-16-2011 at 12:04 AM.

  8. #648
    Well SHIT!!! Yesterday was great!!! Today sucked. What a fucking roller coaster this fucking pain shit can be...... Just needed to vent!! Tomorrow is another day!!!! Praying it will be a good one!!!
    L1 Complete - Injury 3/12/06 - Grateful to be alive!!!!

  9. #649

  10. #650
    Stevezi,


    When I entered training, I used to wonder why God didn't cure everything. Then, I came to realize that it is man who is making these decisions and setting priorities. Once I had explored everything medicine had to offer for my central pain after cord injury, and a relative had gone to NIH to try to research it, I realized that there is almost nothing spent on basic pain research. His group ran out of agar plates in August, let alone any hi tech stuff. He claimed the total budget was six million. Here at this site, a different figure was given, 220 million for research. I guess it depends on how you define research. Is work on opiates basic research? Depends on the person analyzing it.

    I don't think the problem is God. I have spent a number of years writing letters to elected officials asking for more money. I honestly believe if we had a hundred thousand letters a year going to congress, much more money would become available. Right now, the drug companies are going after a drug for diabetic neuropathy, which is not severe like central pain, but the people with it certainly don't like it. They may say their feet feel "pinched" or "a burning". However, compared to central pain, it is only a pain, not their heart and soul. These people, and there are five million of them in the U.S. may prove our salvation. As drug companies try to develop a drug, they may learn enough about the acidification of nerve synapses to figure out how to control our pain. Central Pain itself is given NO priority in our country. Whether God gives it priority is for each person to figure out. Personally, I don't blame God any more than if my girlfriend decided to leave or if my football team loses. However, at first, I did, and I now feel it was not a rational period in my thinking. All guts and no cortex. I was just angry and frustrated.

    Now, I feel it is MY duty to write the letters. I have never met a pain scientist who felt remotely like he was funded. Most of them try to get their patients to donate so they can do their work. And I am talking about some very high level researchers who are the authors of texts. They get grants for other things, and then try to do a little on central pain. We are too quiet. The squeaky door gets the grease. Of the people who went to Kevorkian, there was NO MENTION in the press that they (some of them) had central pain. The condition does not exist. WE have to speak up. Being quiet and brave will just result in our being quiet and in pain. The press is not reading this thread, so we have to try for some publicity. We also need about five hundred more Wise Youngs to encourage pain activism. Sound extravagant? More money is spent on pain than any other medical problem, so how about a commitment to solving it. My two cents.

    In the meantime, we all owe a debt to Christopher Reeve. He donated the money which permitted Bryan Hains to determine that Central Pain patients begin making a fetal sodium ion channel which enhances pain transmission. And Reeves did not even HAVE central pain. He just cared. God bless him wherever he is. If you read his book, I think you will agree Reeve felt it was up to US to get going and stimulate interest in research. It is not an easy thing to convince people that an agony exists for which there are no words, but it can be done with persistence. A little injection of capsaicin never hurts either. It can make true believers out of hardened skeptics, and that one little burning area is nothing compared to being blanketed in the dysesthetic burning all over the body. Personally, I think rehab centers should encourage spouses, mothers, and doctors who undertake to treat Central Pain, to have a little capsaicin trip of their own.
    Last edited by dejerine; 08-24-2011 at 04:49 AM.

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