while looking for other things...good general resources:
http://www.reliefinsite.com/download...ment_JCAHO.pdf

and:
http://www.reliefinsite.com/download...tion_JCAHO.pdf

A little lite reading for a hot summer's nite. - j

A Letter to Normals From One in Chronic Pain:


Having chronic pain means many things change, and a lot of them are invisible.
Unlike having cancer or being hurt in an accident, most people do not understand even
a little about chronic pain and its effects, and of those that think they know, many are actually
misinformed.


In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn't mean I'm not still a human being. I have to spend
most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably
don't seem like much fun to be with, but I'm still me, stuck inside this body.
I still worry about school, my family, my friends, and most of the time, I'd still like to hear you
talk about yours, too.

Please understand the difference between "happy" and "healthy".
When you've got the flu, you probably feel miserable with it, but I've been sick for years.
I can't be miserable all the time. In fact, I work hard at not being miserable.
So, if you're talking to me and I sound happy, it means I'm happy. that's all.
It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better,
or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!"
I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that,
you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that
I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes
yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed,
or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo.
I never know from day to day, how I am going to feel when I wake up. In most cases,
I never know from minute to minute. That is one of the hardest and most frustrating components of
chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating",
"being sociable" and so on, it applies to everything. That's what chronic pain does to you.



Please understand that chronic pain is variable. It's quite possible (for many, it's common) that
one day I am able to walk to the park and back, while the next day I'll have trouble getting to the
next room. Please don't attack me when I'm ill by saying, "But you did it before!" or
"Oh, come on, I know you can do this!" If you want me to do something, then ask if I can.
In a similar vein, I may need to cancel a previous commitment at the last minute.
If this happens, please do not take it personally. If you are able, please try to always remember
how very lucky you are, to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better,
and can often make me seriously worse. You don't know what I go through or how I suffer
in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it",
may frustrate me to tears, and is not correct.
If I was capable of doing some things any or all of the time, don't you know that I would?
I am working with my doctors and I am doing what I am supposed to do.
Another statement that hurts is, "You just need to push yourself more, try harder".
Obviously, chronic pain can deal with the whole body, or be localized to specific areas.
Sometimes participating in a single activity for a short or a long period of time can cause more damage
and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense.
You can't always read it on my face or in my body language. Also, chronic pain may cause
secondary depression (wouldn't you get depressed and down if you were hurting constantly for
months or years?), but it is not created by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now,
that probably means that I do have to do it right now, it can't be put off or forgotten just because
I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive,
nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought,
and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood,
if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better.
This can involve side effects or allergic reactions, as is the case with herbal remedies.
It also includes failure, which in and of itself can make me feel even lower.
If there were something that cured, or even helped people with my form of chronic pain,
then we'd know about it.
There is worldwide networking (both on and off the Internet) between people with chronic pain.
If something worked, we would KNOW.
It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure,
then so be it. I may take what you said and discuss it with my doctor.



If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact,
I try very hard to be normal. I hope you will try to understand. I have been, and am still,
going through a lot. Chronic pain is hard for you to understand unless you have had it.
It wreaks havoc on the body and the mind. It is exhausting and exasperating.
Almost all the time, I know that I am doing my best to cope with this, and live my life to
the best of my ability. I ask you to bear with me, and accept me as I am.
I know that you cannot literally understand my situation unless you have been in my shoes,
but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you, people who are not sick.
I need you to visit me when I am too sick to go out.
Sometimes I need you help me with the shopping, the cooking or the cleaning. I may
need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life.
You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again,
just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening.
It really does mean a lot.


>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Ran across this link to Janet Ruhl's website - has some really good info re: blood sugar levels and organ damage.

http://www.phlaunt.com/diabetes/14045678.php

Alkymst

http://www.grandtimes.com/numbtoes.html

This article is chock full of BE AWARES, BE CAUTIOUS and APPROACH CAREFULLY's....

http://www.iasp-pain.org/AM/Template...ContentID=2083

Two aspects strike me about this: 1] the cautions interspersed throughout the diagnositics and 2] the types of doctors and papers, 'names' if you will, that are used as references.

It might be useful tho as it incorporates a variety of neurologic and vascular etc. causes into the medical 'assessment' mix. Extra food for thought? - j

Hi All.

This is a link (taken from the Neuropathy Association).

Just click on the link, choose your state, and you'll be prompted from there. You just might find a neuropathy support group in your area.

I don't know how to make this a stickie, maybe one of you can do this???

http://www.neuropathy.org/site/PageS...=support_index

Dahlek has started a thread on this with information:

http://neurotalk.psychcentral.com/sh...ad.php?t=31082

Tho it's for CIDP and about IVIG, the whole diagnostic and assessment parts of it are key for all of us. The graphics are well, just that...clear about demeyelination and that process, and other aspects about the diagnostic decisions that COULD/SHOULD be made about treatment.

http://www.cidpinfo.com/

Happy reading? - j

Absolutely excellent article!!! Thank you from the bottom of my heart! I've been diagnosed a little over 2 months with little help from Drs, fired one recently and have a new Neurologist apt this coming Monday. I am 52, and my PN is fast moving, spread to most of my body with little to no reasons for it that I know of. Very high pain. Will be pursuing toxins, immune problems, back/compression, gluten problems; I have no Diabetes. I've already started some of the vitamins you mentioned; general, folic, C, E, and not enough: Acetyl-L-Carnatine, Alpha Lopiac Acid, Fish oil. I guess I have a good start anyway. Diet could improve & excercize needs a lot of work! The emotional side is the hardest, especially as this has spread so quickly and my life is so entirely turned upside down. You have empowered me and I thank you!!! Rose Terry RMTerry@prodigy.net

The links below to diagnostic and medical condition codes could be useful in general for insurance purposes and to decipher and clarify medical jaragon.

http://icd9cm.chrisendres.com/

or http://www.icd9data.com/

this has a more general explanation and actually refers back to the 1st site
http://www.medicalcodingandbilling.c...dure_codes.htm

Alkymst