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

  1. #651
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    Tried to read your post,but I'm still in pain.I like to know what's your POINT.I'm not trying to " offend " you,but alot of that seemed to be several different things gortex, " GOD ",aids,Kevorkian;Cristopher Reeves etc etc.
    You started out with Stevezi...do you have a problem with his post?Or even mine?
    He nor I was bashing your "God"Im just uncomfortable when others tell me he saved my life,or he let me live.I choose where I " stand " on the issue of " God "
    I believed in a higher power,but never willingly went to church when I was younger.I converted when I saw the unbelievable phsychological and physical " pain "and DEATH to the ones I loved the most suffer through ( EVIL ).I'm not angry at " God " because I'm a incomplete quad.The monumental mistakes I made were as a result of my own stupidity.I don't want to anger some nonbelievers,but if you are atheist because your angry at your situation or you didn't get an Xbox for Christmas...well your atheist for the wrong reasons.As a matter of fact,you are not atheist you're just pissed at " God "I think some are confused.Please research and then make a decision.
    Sorry I got off topic,but it happens.
    Gunnslinger8
    Last edited by Gunnslinger8; 08-22-2011 at 09:21 AM.

  2. #652
    Hi Gunnslinger

    You said:

    Tried to read your post, but I'm still in pain. I'd like to know your point.

    Reply:

    Sorry that I cannot provide any relief. I wish I could.

    I don't view posts here at this particular thread which Grange began for venting, as needing a point, as much as just expressing feelings about our $&^%$ pain!!!. So I apologize if I did not really have a point, rather a description that I was sympathetic because I had had similar feelings.

    I guess I didn't make my post very clear. I hoped to convey the idea that when human beings, with finite amounts of resources, allocate those limited resources, pain is a stepchild when it comes to research dollars.

    My history is that I went through a period where I assumed pain (being so central to the mission of medicine) was being heavily researched and I did wonder why God didn't help those dedicated hordes of researchers along, ie help me, so the pain would stop. When I realized that opiates were being researched but that basic pain was not really being addressed, then I realized it was probably not about God any more than any other problem. There is quite a bit of resistance to the idea that our pain is real. We need a way to measure pain just to put us on the map. A large proportion of the population thinks only of ordinary pain, where one should just be brave and bear it and NOT complain. They do not have a concept of what Central Pain is like. It cannot be born so as to build character. It just eats away as long as it persists.

    I spent a small fortune buying every book I could find on basic pain and subscribing to journals. The journal PAIN cost seven hundred dollars per year at that time. No wonder doctors weren't reading it. I corresponded with the authors. In each case, the response I got was that they simply could not find realistic amounts of money to conduct research. It was embarassing. I had top people thanking me for my "interest in pain" and asking me if I had a couple of million because they had this great project they wanted to run. I was asking them for help. They responded by asking me for help.

    Then when I found that the NIH pain research complex was just FIVE researchers wishing they had some money, I began a letter writing campaign. We generated about three thousand letters, and there was a little action to provide some more money to the NIH pain group, (which is actually in the DENTAL division at NIH, ie the NIDCR).

    I am not trying to influence anyone's religious ideas at all. That is their personal business. I just see anger (at God or anything else) as kind of one of the stages of acquiring central pain. Animals roar with pain, and man is an animal. Eventually, when one passes somewhat through the confusion and anger stage, and considers how a solution will be found, it seems logical to think more research needs to be done.

    I am just trying to say this problem, like any other problem, requires the drive and impetus which only publicity provides, leading as it does eventually to research dollars. I was not being unsympathetic to your pain, nor was I advocating or opposing any particular reiigious perspective. Patrick Wall said as soon as we theologize pain, research stops. If we view pain as a medical problem to be solved, we realize we need to work hard, and get the powers that be to allocate funds, which requires publicity.

    If you don't ask, you don't get. If those of us with central pain do not write to our elected representatives, speak to the press, inform the public that our pain state must be solved, nothing will happen.
    Last edited by dejerine; 08-23-2011 at 03:28 PM.

  3. #653
    On a night like this.......I'd like to just scream my bloody head off......curl up in a fetal position, if I could, figure out some way to make the pain just stop! It's taken away my life....until there isn't much left. I can't find me anymore.....I'm lost somewhere......

    This will be a long, lonely night. They always are.....hopefully things will look better in the morning light.....

  4. #654

    bad run

    been up for days and things are not looking better in this mornings light.

    all that i am is all gone, i'm drowning in a sea of pain and there is no lifeboat, island or shore in sight, the water just seems to be getting deeper
    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

  5. #655
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    Thank you Dejerine for explaining,and for your extensive research...need more like you.
    I hope we can keep in touch.
    Gunnslinger8

  6. #656
    Bollefen

    I don't like to guess, but from past posts, it seemed like your life position required you to be highly functional. You have a lot of responsibility. There is only so much life force in people and maybe you are not able to do what you are required to do. The consequences of telling this to the people around you may not be pleasant, but if you have done your honest best and cannot do it any more, then you should not feel like a failure if you have to do less. I don't know what is on your shoulders, but somehow you have to save something to endure the pain. That is my two cents.

  7. #657
    dej, I made a career out of direct action organizing (the Saul Alinsky "Rules for Radicals" model in which you organize the people directly affected by a problem to take political action to get a solution to their problem). Your post sums up the life cycle of an activist perfectly -- the entire basis of grassroots advocacy is getting people to make the personal political. Personal stories that put a face to the problem and explain the solution are powerful in the world of politics.

    The amount of influence carried in an appeal to policymakers depends on two factors: the amount of effort put into the appeal and whether the elected official perceives your constituency as likely voters who can help or hinder their chances of being elected. That's why seniors are "The Hand That Rocks the Political Cradle" -- they write letters, make personal visits to district offices, attend town hall meetings, etc. and they VOTE.

    The most effective means of advocacy is a face to face meeting with the Member of Congress (MOC) and/or their policy staffer. This doesn't require a trip to DC -- every MOC returns to their districts during Congressional recesses. In fact, they're all in-district right now for the month-long August recess. Handwritten letters with personal stories also carry a lot of weight as many MOCs believe that for every person who takes the time to write, there are as many as 300 others who feel the same way but don't put in the effort to send a letter. Petitions, pre-printed postcard campaigns and such are useless.

    It would be very easy to set up a constituent letter in support of increased funding for central pain research that people could personalize and send online using the tools at the Congress.org web site. I'd be honored to help get the letter up and running, write up tips about what makes a letter effective, and help get the word out about what we're doing.

    It can take a very long time for people to move from the victim stage (this sucks!) to the activism stage (this sucks and it's long past time somebody did something about it!). MADD (Mothers Against Drunk Driving) was one of the first organizations to successfully serve a dual purpose as a support group that also helped its members become activists. They're the model to emulate.

    You get it more than anyone I know, dej. And by it, I mean both the encyclopedia of central pain and what needs to be done to make true relief for it a reality. I am extremely grateful that I've met you and been able to commiserate, and now conspire, with you about the hell that is central pain and what we can do about it.

    @Trudy and Ket Kit: my dear friends, your suffering breaks my heart, and it pisses me off royally that there's nothing that can be done to bring you respite. I want you to hang on, but I feel like such a hypocrite by encouraging you to do so when I'm not sure I can do the same.

    I need to do a rant of my own. It's been a hellish week down here pain wise. Barometric pressure and dramatic temperature changes/high heat are a primary trigger for me. The passage of what was then Tropical Storm Irene directly over St. Croix on Sunday and the ensuing multi-day power outage sent my pain -- central and other -- out of control. The dislocated shoulder screamed constantly, and set off spasms in my arm and hand that hurt in their own right. The brillo faeries and frozen porcupines were out for blood in an unrelenting attack on my left butt cheek and thigh and my right leg, and in my rectum (a new front line of their attack). I spent most of Monday night and Tuesday sobbing. Being cut off from the world didn't help. In addition to no net access because of the power outage, the cell towers in Puerto Rico that carry my service were heavily damaged, so I couldn't make or receive calls or texts (still can't, in fact).

    This pain shit is old.
    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


  8. #658
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    Quote Originally Posted by Stevezi View Post
    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?
    You totally turned my post into something else. MY post that you quoted was directed @ "fantasyland" , not you or anyone else bc she was knocking everyone for cursing by throwing God into the mix. I DO NOT and WILL NOT evvveeeer tell anyone to thank God for being alive or to take their pain away. That is up to the person themselves. For all I care, you can do WHATEVER you want to do!As I stated God does not take my pain away and I have one of the biggest potty mouths ever. Her post just seemed hipocritical to me and I used MY experience and beliefs to direct towards her. I'm not biblethumping anyone, so take a suggestion and read posts more clearly b4 you decide to post on behalf of them. Because, HELLO...I've already been VENTING and CURSING my pain in this very thread!!!! back to you.

    F*ck my fu*cking pain!!!!!

  9. #659
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    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!

    Sorry you are struggling. I know how screwed up it can be!!!!
    THANKS!

    Starting to feel things you don't want to is quite evil. I have a slipped disc & damage @ L4,L5 & S1. So far, I'm feeling 1/2 way down my back & I hope I don't get sensation that far!

    I've been away about a month & just now catching up. I feel for everyone of you guys here. Hugs to you all. FFS everyone!!!!

  10. #660
    HipCrip.....I so know how you feel girl! The storms and the heat are the worst! I've been stuck indoors all summer......hell....even if it cools off, I still won't be able to do much until these legs heal. Two weeks ago I laid on my right arm long enough to stop the blood flow....now I can't use my right hand. I'm right handed.......my postcards are just sitting in front of me. I can't write a dam thing yet. I get so bored...and I miss writing. It takes my mind off of things. I guess I'm lucky I'm able to two finger type! I've done this to my left side before, but never my right. I hope I never do it again! Will be thinking of you.....

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