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Thread: need to wear a shirt

  1. #21
    Ignore this duplicate post. Can't seem to delete it.

    [This message was edited by dejerine on 02-27-04 at 05:26 PM.]

  2. #22
    Society seems to value diversity, but not quite as diverse as CP gets. Like Alan, I also would like to wear some more clothing too, like shoes. Of course, such "luxuries" don't really matter, or is clothing actually pretty dang important. Maybe not on "Survivor" but it seems pretty important where I come from.

    I feel guilty for mentioning my own situation, since Alan has things so much worse (I truly wish I could help you Alan--this week I tried to get a documentary film maker to go back and film your story) but since I am better off than Alan all I can do is try to raise heck and not let the public off the hook, until they realize neurotransmitter blockers are not only necessary but it is indecent not to get the work done.

    Why let someone live suspended in such a state while we worry about trivia, such as the latest on Ben Affleck and J-Lo., or which rapper is in jail, or who the sexiest man alive is. (We already know it is Wise Young from his posts at the R&S section).

    Watched a movie, "Bedazzled" where Elizabeth Hurley plays the devil and does all sorts of devilish things. For example, she replaces meds with placebos on the med tray. When Brandon Frazier tells her she shouldn't do that, she says, "Why not? They work just as well".

    This is another sad example of Hollywood's misplaced values. The devil is NOT even an authority figure, so the placebos would NOT work just as well. Granted the PET scans PROVE they work well, but not "just as well". Also, why would Hollywood link placebos to deception? This goes against a time honored tradition, still accepted by many pain clinics.

    Yes, for those who believe in antiquity, placebo is right down your alley, which roles straight and narrow mindedly across the flat earth. Too bad you can't meet at Stonehenge to conduct your ancient rituals of healing. I think it is fair to say time and repetition is really the sum and substance of the placebo religion. I was talking to Santa Claus yesterday and he told me placebos don't work for CP. The elves agreed with him. The fairies in the forest then flew up and said Santa was correct. When their time for severe pain comes, we can only hope the placeboists can reach some astral plane where their own mythologies can save them, and they can put mind over matter.

    Funny how "mind over matter" evaporates once medicine has a real treatment that works. No one I know treats infections with "mind over matter" any more. They would be sued out of their minds. What gives? Was it baloney all along, or do we just "prefer" to do it differently now, with antibiotics. How did the terrifically difficult area of severe chronic pain become the one area where placebo is supposedly really big time medicine. All pain hurts, but truly SEVERE pain is true torture, and in a class by itself.

    Davidoff reported that severe CP is worse than labor pains. What he doesn't say is what that might be like over many years and over ALL the body. It is unthinkable of course, and therefore impossible, and we need not even concern ourselves with it.

    The worse things get, the better they get, and so we are back to placebo, like the bandaid on a kid. Lots of proof around for placebos. More of it every month. Even high tech proof. Insensitive as heck to start parading it in front of those with severe CP, since it doesn't do any good.

    Bring out the capsaicin. We need to inject everybody in the country. After 30 minutes, they won't worry about J-Lo so much, and the reporters would move over to the NIH labs.

    I have not been anointed as a placeboist, although many do so anoint themselves, and renew their vows yearly, and even publish on it. I would have been more gullible, except when I still burned after heavy IV demerol and other IV opiates, and nearly losing consciosness but still burning, I realized I was really in the soup. Placebo is just another way for the doc to avoid saying he doesn't have anything else, obviously. Who would actually use placebo if they had something effective? "Not having anything" is a hard thing to say to someone like Alan who clearly could use some REAL help. I hurt every day for Alan and everyone else should also until we get people off their duffs and into the lab.

  3. #23
    Senior Member alan's Avatar
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    The doc wants me to try Flomax again, at a low dose at night (when my BP is higher, because I'm laying down, so it won't make me faint.) If the hypotension side effect goes away after a few days, we'll try some of the meds I was unable to take before (like tricyclics), and see if the Flomax counteracts the urinary retention.

    Chronic pain is a different animal from short-term pain, be it labor pain or even things like the terrible beatings and torture of Christ shown in Mel Gibson's movie. As excruciating as those pains are, they're finite - they come to an end fairly quickly (even if it seems to the sufferer to last forever.) Chronic pain has no endpoint, and those of us who have it know the torture of it. As Dejerine said, unless we inject those who don't have chronic pain with capsaicin day after day after day, they can't know what we feel. Who can imagine a body on fire 24/7, or the feeling of compound fractures that never get relieved?

    Alan

    "Was it over when the Germans bombed Pearl Harbor?"

  4. #24
    Senior Member alan's Avatar
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    The weather was too nice today (72 degrees) - I had to get outside. So, I lived with a shirt. More uncomfortable, but worth it.

    Alan

    "Was it over when the Germans bombed Pearl Harbor?"

  5. #25
    Congrats on getting out to enjoy the beautiful weather. I hope you were able to enjoy the day.

  6. #26
    Senior Member alan's Avatar
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    It was nice. I wasn't able to go around the neighborhood, thanks to my blasted back (too bad shoulder blades can't be removed.) I used to do that every nice day.

    Alan

    "Was it over when the Germans bombed Pearl Harbor?"

  7. #27
    Super Moderator Sue Pendleton's Avatar
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    I don't know what it is called. Maybe Wise can help here. I just recently had two lesions scrapped off my face. Yea, scrapped by a plastic surgeon. The doc used a dab of some sort of cream that freezes the area or dulls it. The only thing I felt was where he stretched each cheek tight as his scapel went to work. I had about a 1/10th second of pain when he snipped off a small skin tag on my eyelid using the same cream. He just dapped it on with a swap. No cauterizing like a dermatologist normally does. A spray on weakened form of this might just work on your upper body Alan. And try well washed T-shirts first. Make sure you get a water softtner or double rinse using a small amount of vingear in the second rinse to get all the soap out. I had that horrible burn first in my right arrm where the muscle did come back and then later in my thighs. The doc finally had me on methadone for the thigh pain for a few months. Again, the pain klillers eiher helped the pain over time or I got return in those areas.

    Have you tried 4-AP yet?

    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

  8. #28
    Senior Member alan's Avatar
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    Sue,

    I've tried all sorts of creams. Nothing gets through to my brain, since all these sensations are below my injury level.

    I did try 4-AP. No luck. I'll probably try the extended release version once it's approved - nothing to lose by trying.

    Alan

    "Was it over when the Germans bombed Pearl Harbor?"

  9. #29
    Super Moderator Sue Pendleton's Avatar
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    Seems rather drastic but has anyone ever tried elctric shock therapy for pain? I mean the new kind with anesthetic, etc.?

    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

  10. #30
    what is the electro shock for pain?

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