Friday, 13 May 2011

This response comes from a forum on and is for those of you facing our old friend, the stony-faced doctor who's had a long day! Stand your ground and use this. It certainly makes the point! Thanks Mr. Moffie(and thanks too to J.R.E. from Florida who sent me this response).

Quite a long time ago, Tim
( Moffie) who has since passed on , wrote this paper. I'd like to repost it, for those that have HIV related neuropathy, and seem to be dismissed by their doctor.

Tim had written this some time ago:

From Tim (moffie) :

In the past, many of us were placed on the "d" drugs, or ddi, ddc, and d4t. I was on all three for some time, I think about three years. I spent most of 1997 and 8 making sure that the Lazy Boy Recliner didn't move. Being a person of some considerable acitivity, I found this time to be one of pure torture. I was also dealing with the after effects of two bouts of PCP, so the time was a blur in my memory for the most part, due to the fact that the high fevers, 104 -105, left my brain pretty blank about that period of time.

What follows is a paper that I wrote for those of you who suffer from PN, to hand to your medical professional, when you tell them about the joys of PN, and they shrug their shoulders and say that people with Diabetes have been suffering from PN for ever, so get used to it.

Blow Torch, Vice-Grip, Live Socket With Bare Wires, Punch, Hammer, Light Bulb, Carpenter's Saw

Medical Professional:

What follows are instructions for you to do to simulate the true pain and discomfort that is present with HIV related Peripheral Neuropathy. This author does not know the difference or similarity of Diabetes related PN, but when I comment about the severe pain that I suffer on a twenty four hour basis, I am always put off with the instruction that people with Diabetes have been suffering with this forever, so don't complain about it!

You might be wondering what the list of common household objects are doing at the top of this document. These will have to be gathered, and used for you to experience the true joy of what you are about to embark on.

First off, take the blowtorch, with a full tank, light it and place it in such a way that the intense heat of the flame covers the bulk of the bottoms of both feet. If no blowtorch is available, sitting on a tall stool and placing your feet over the stove will work as well. Now you are experiencing the "constant fire" of PN. Wait a minute, why are you moving your feet?, you must leave thiem over the heat until you are crazy with the pain, and for the rest of this exercise.

Now you are set for the next step. Take the vice-grip, and place it firmly locked on one of your large toe joints. Make sure to place it under such pressure that the pain brings tears to your eyes. Without removing the vise-grip, and making sure to leave your feet over the heat, have someone else place the elcetric cord (wires exposed) into the wall outlet, and then at random have them touch your skin with the exposed wires, ever-so-lightly, anywhere from the tip of your toes up to your knees. Meanwhile, pick up the hand saw and start dragging it between your toes (any of them will do), remember to do this activity very slowly and with determination to acieve the maximum effect from the teeth of the saw. Pick a toenail, and place the punch just under the nail and then use the hammer to tap the punch into your toe to about halfway up the nail. Now you can remove the punch. It is now time for a break, so you can remove your feet from the heat source, and remove all the tools. Carefully break the light bulb into your shoes, and remove the metal socket and throw it in the trash. Make sure all the glass is still inside your shoes, put them on and wear them for the rest of the day. For the maximum effect, the glass should be emptied into your socks for a really accurate simulation. By the way, you are late for that meeting you are scheduled for and nobody is going to give you a chair, except that wonderful elderly lady from the mail room. What do you do?Huh Take the chair, or go ahead and be polite and stand for the next hour. Aren't you glad that you don't have to choose, because this has only been and exercise? Those of us, who have no choice, live on and handle the pain as well as we can.

In the future, when one of your clients speaks to you of their pain, PLEASE remember this exercise, and do not try to diminish their agony. Do not suggest that they walk five miles (or even five yards) a day for the good of their heart. with the pain that comes with Peripheral Neuropathy, a really good and final heart attack could be a true relief.

One final note, this paper does not cover the pain that also migrates to your hands. The same intensity and disabling effect happens, which makes life increasingly difficult for those affected. Just remember, try to be kind.

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