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Thread: need to wear a shirt

  1. #11
    Dear Alan,

    This has surely got to be an unusual website, with people asking if they might wear clothing, through some means.

    Years ago a lady told me how she had to take work as a waitress to support her husband through school. She was required to wear a short skirt and received comments she thought were degrading and treated her as unintelligent. I never thought too much about it until CP came along. The ability to wear less clothing than is appropriate causes tremendous discrimination. For my casual activity I make myself more comfortable, not others.

    It causes tremendous anger also, and laughter, and you name it. Even my doctor remarked at it, which was not comforting, since it was apparent he did not understand CP.

    No matter how uneducated or how much of a loser is the commentator, if you don't wear the right clothing, you are the target of frequent, open, rude remarks from any thoughtless person. The person paid to GREET YOU at the discount store will laugh and make comments. If I say I have a brain disorder, they laugh harder. If they laugh too hard, they get my glutamate lecture, which really upsets them and makes them call for security. I no longer mind, but my children do when they are with me. We are all equal under the law, provided we are properly dressed.

    I wrote two letters to the Dept of Justice, asking them to draft rules, under the Omnibus disability act, to allow CP patients with the problem of abbreviated clothing in public places like courtrooms. I received no reply whatsoever. I made phone calls, and they promised to report this but nothing was ever done.

    The inability to wear clothing makes a huge difference in life. I am sorry to hear you make a poignant request for what everyone takes for granted. We must wear clothing to go into public, but wearing it, if we remark on our inability to do so, people say, "But you are wearing clothing right now". This is in the same category as people who say, "But if you are in severe pain, why are you smiling, (or "not crying").

    These things are a mystery to myself, how one should proceed. I still like the post at Pain Forum from months ago, when someone said if the average person woke up feeling like he does with CP they would call an ambulance immediately and have themselves admitted to the hospital.

    Any clothing for me must be extremely slick, hard finish, non heating type of stuff, or else fit VERY loosely, so as not to touch skin of the extremities. Perhaps a local church or public agency would sew a hooded thing that would hang from your head and touch your upper body very little, like a poncho. I cannot remember if you have CP on your face. If so, this would not work.

    Just trying to be helpful. The lidocaine patches tend to help against evoked pain but it is only safe to use three at once, and they are very expensive. Three patches would cover about 60 square inches which is not going to do much good. It is mysterious how the skin can still burn even with the patches--the pain must be in the thalamus I suspect. I can be totally numb from lidocaine and still feel that burn, and if I concentrate very hard, it seems the burn is coming from somewhere else than the skin area which is numb. I guess it must reside in my brain.

    I will write another letter to the Justice Dept in your behalf. The committee to enforce the omnibus act still doesn't get it at all that they need to take steps in our behalf. NASA developed a suit with a built-in air conditioner. It blows air between skin and fabric, but it costs 25,000. I doubt whether Medicare would even consider it, and don't know if it would help or not.

    Maybe you could write to one of the high priests of placebo and ask them to send you a placebo shirt.

    Placebo is so far below what we have to face with CP, it is an obscenity to mention it. Sort of like handing a picture of Kellogg's cereal to someone starving in Auschwitz.

    [This message was edited by dejerine on 02-25-04 at 04:00 PM.]

  2. #12
    Senior Member alan's Avatar
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    I've tried doxepine cream, ketamine cream, ketamine nasal spray, and the lidocaine patches (among other things.) I still have those four here.

    I need a shirt so I can get outside when the weather gets more springlike. I'm not even focusing about going places - that will likely require some reduction in back and abdominal pain level.

    This dang pain and scoliosis is depressing, and getting more so.

    Alan

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

  3. #13
    Alan

    Have you tried a loose cotton tank top?

    Mary

    If I can see it, then I can do it. If I believe it, there's nothing to it.

  4. #14
    Connecticut is going to provide wigs for cancer patients. The news article said:

    "When you're not wearing a wig when you lose your hair, its an open indication of illness.We think it's a vital part of self esteem... You go through so many feelings when you are told you have cancer_shock, fear, bewilderment. I certainly went through outrage This was the only time I felt insulted."


    Alan is talking about something to permit him to go into public. I think the medical system should credit this. No one wants to go around looking hairy, or weird. Germany has provided wigs and twice a year cleanings for nearly twenty years, for everyone.

    I don't think people realize what a huge contribution David made by gathering Round II of the Central Pain surveys. It is his work, which put central pain problems in the forefront. The different aspects of Central Pain, such as the social problems, can only be addressed through database gathering such as David did and is now being done at painonline.com.

    The cost of wigs in Connecticut is estimated to be 1/2 million dollars or more. Waxman's group at Yale in Connecticut is said to do about 1/3 the important pain research in the nation, yet he will have less than this amount to study pain. More than 100 million dollars will be spent in Connecticut on pain (including anesthesia) per year. It seems foolish not to fund pain research, since we can END it.

    As you can tell I am an activist. And I sure don't like to see Alan struggling to find a way to go out into public. The little motorized wheelchairs cost 7,000 each, and Medicare buys those for elderly who can't get around, all the time.

    Why shouldn't they buy Alan a suit where air blows the fabric away from the skin, so he can at least contemplate going somewhere. I believe we neeed that pain bill that is being considered in Congress which Calico has emphasized.

    Pain sufferers unite. We have nothing to lose but the public's pain, even if they don't have it yet.

    THANKS AGAIN TO DAVID BERG. His work is greatly underappreciated by us. If you haven't filled out the survey at painonline.com, please do so.

    In the meantime I intend to go around looking like the big fat hairy greek bachelor, until the public gets so sick of seeing me that they fund pain research. Hey, it could work.

  5. #15
    we used to use compressed air from the scuba tanks to inflate and equalize our dry suits when cold water diving, the suit would blow up like the michelon man eassily.only problem is the shirt would be hotter than, a fan type circulator would be cooler . like a hawaiian aloha shirt with a nehru collar.
    be better to stop the pain though...

  6. #16
    alan,
    Does it make any difference if the fabric is damp, to allow for evaporative cooling? I've seen personal misting setups, sort of like a one-person swamp cooler (if you've ever seen homes with that type of cooling in the desert). It should be easy to rig up a simple fan to keep a slight breeze over the damp fabric.

  7. #17
    Senior Member alan's Avatar
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    Wet or dry, loose or tight doesn't matter. In the early years, tight shirts were better, so that's what I wore.

    I did a wonderful job on my neck, apparently.

    Alan

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

  8. #18
    Alan,

    What if we paint one on like those girls that Jeff posted about in R&S? Grrrrrr...this is frustrating for you...I guess a Yankee t-shirt is not good either...grrrrrr.

    I am sorry...I wish I had something to offer.

    Mary

    If I can see it, then I can do it. If I believe it, there's nothing to it.

  9. #19
    Senior Member alan's Avatar
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    If I could just find some non-bladder affecting medication(s) that reduce the pain some, I could tolerate shirts long enough to wear them for a decent amount of time. Pain relief would also enabe me to drive my chair like I used to - all around the neighborhood.

    Alan

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

  10. #20
    topomax and zonegran didnt wack my bladder, zonegran has a long half life so it takes a lot longer to see if its working..

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