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Approved-By:  Bill McGarry <wtm@SHELDEV.SHEL.ISC-BR.COM>
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Date:         Tue, 12 Jan 1993 11:12:00 EST
Reply-To:     Bill McGarry <wtm@sheldev.shel.isc-br.com>
From:         Bill McGarry <wtm@sheldev.shel.isc-br.com>
Subject:      Handicap Digest # 3095

                             THE HANDICAP DIGEST

                                 Issue # 3095

                          Tuesday, January 12, 1993

Today's Topics:


                                ******


                                  Shingles
                                What it means
                            What it means, part 2
                                      ?
                                      ?
                                Chiropractors
                                 Co-workers
                         Re: Toxin Alleviates Spasms
                                Re: headache
                        Deep Relaxation/Self-hypnosis


                                ******


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                              Bill McGarry (Moderator)
                              (203) 337-1518



------



Subject: Shingles
From: Kathleen.Mcintosh@f181.n264.z1.fidonet.org (Kathleen Mcintosh)
Organization: FidoNet node 1:264/181 - Les's Corner BBS, Richmond VA


[This is from the Chronic Pain Conference]

I heard something amusing on NPR about why people like to eat hot
peppers.  It seems that when you eat them, the body feels as if it's
been damaged and releases endorphins.  Also, I read long ago how the
plains indians would treat sore throats by blowing cayenne pepper
into the back of the patient's throat.  I can't imagine it myself,
but it seems that capsicum is a good remedy for many things.

--
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Internet: Kathleen.Mcintosh@f181.n264.z1.fidonet.org




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Subject: What it means
From: Linda.Cummings@f34.n375.z1.fidonet.org (Linda Cummings)
Organization: FidoNet node 1:375/34 - Batteries Included, Montgomery AL


[This is from the Chronic Pain Conference]

By special request, a repeat of what bbs'ing means to me:

About a year and a half ago, my husband, Eddie, and I discovered
the wonderful world of BBSing.  The BBS opened up a new world for
me, especially.  Being disabled from two failed back surgeries, I
had begun to feel pretty useless.  I had my first partial
laminectomy in November of 1982 because of a ruptured L4/L5 disk.
The second partial laminectomy was in March of 1988.  Then, in
September of 1990, I had a Spinal Cord Stimulator (SCS) implanted
for the chronic pain.  Although it afforded me *some* relief, it
wasn't as much as I had hoped.  The chronic pain made me depressed
and I felt totally inadequate and lonely.

Before I get ahead of myself, let me back-track just a little bit
and tell you about a wonderful man who supported me before and
after the implant.  I had put an ad in our local printed Bulletin
Board asking for anyone who might have undergone this procedure.  I
got a call from the sister of this person.  She said she was going
to call him and have him call me.  We talked over an hour the first
time he called.  We compared symptoms and areas of pain.  We talked
about past surgeries. He told me about having the SCS implanted by
the same neurosurgeon who was going to implant my SCS.  In essence,
I felt like I was not alone anymore.  My spirits soared and I felt
like I was ready for the implant.  I had felt, before I talked with
him, that I was the only person in the world that had the chronic
pain I was suffering. Learning that I wasn't alone made a huge
difference in my attitude.

When we discovered BBSing (quite by accident), it helped take my
mind off the pain.  I felt that if I could help someone else like
he helped me, I would at least be accomplishing something with my
life.  I wrote a message and sent it out.  The message contained a
little of my medical history and my offer to correspond with anyone
who needed moral support for their medical problems.  I received a
message that told me of a particular sysop who carried an echo
called Spinal Injury. Several days later, we were users on his
private board. I not only was able to read the Spinal Injury echo,
but Chronic Pain as well.

As we all do, I just read messages for awhile.  Then, a message hit
home and I had to respond to it.  The message was from a man who
felt life wasn't worth living.  He was pouring his heart out in
this message and I took it for a plea for help.  He expressed his
desire to end his life and had even procured a book on ways to
commit suicide.  Having had those feelings myself, I couldn't
ignore his message.

I wrote him a long message letting him know that he "was not
alone." I told him how I had even written a suicide letter to Eddie
expressing my feelings that I felt he was better off without me and
how I couldn't take the pain anymore.  I said how useless I felt
and how I didn't think that I could cope with the pain anymore.
Then, I told him how I started laughing after I finished the letter
because I thought to myself, "I can't kill myself because I'll miss
the last episode of 'Dallas'!"

(continued in next message)

Linda

--
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Internet: Linda.Cummings@f34.n375.z1.fidonet.org




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Subject: What it means, part 2
From: Linda.Cummings@f34.n375.z1.fidonet.org (Linda Cummings)
Organization: FidoNet node 1:375/34 - Batteries Included, Montgomery AL


[This is from the Chronic Pain Conference]

(continued from previous message)

I waited on pins and needles for his reply.  When I finally
received his message, he told me how wonderful it was of me to
share that with him and that he really didn't think he could kill
himself either.  This was the beginning of my life being changed
for the better.  I felt useful! I felt needed!  I had found a place
where people were just like me.  In turn, other people began to
realize that there were others out in the world just like them.

It didn't matter that some people were in wheelchairs and others
weren't.  We all had something in common...pain.  The more messages
I wrote, the more useful I felt.  People started telling each other
how wonderful it was to have an outlet to express their feelings.
We all could gripe all we wanted, and know that everyone understood
our moods. We all helped each other with moral support.  We all
shared our experiences with doctors and pain clinics.  We all gave
advice to each other and helped each other as much as we could.

In a world so torn apart by people climbing their way to the top,
PwDs (persons with disabilities) banned together to help each other
in a triangle of love and understanding for their fellow friends.
At the touch of a button, people could correspond with others
around the world. Sighted people became friends with blind people.
Quads and paraplegics became friends with walking people.  Hearing
impaired people became friends with people who could hear.  PwDs
made friends with TABs (temporarily abled bodied).  Barriers were
knocked down faster than the Berlin Wall.  What did all of this?
Computers and the knowledge that BBS's linked people from all over
the world together.

There have been studies done that show when a baby is not held or
loved, it suffers tremendously and can sometimes even die.  The
human race was not meant to be alone.  If physical closeness to
someone else is impossible or not feasible for some reason, then
*some* form of contact must be made.  To feel *alone* can be as
damaging as actually being alone.  If a person has medical
problems, they can feel that ache of loneliness even greater than
someone who doesn't have medical problems.

I sometimes tell people that BBS'ing has literally saved my life.
Had I not had the outlet of expressing my feelings and helping
others, I do not know what kind of person I might have been today.
I have the opportunity, through this electronic media, to spread a
little sunshine and hopefully make others laugh a little.  I can
share myself with others and in turn, share in their lives as
well.

A few of you have had the opportunity to read about my experiences
from the first surgery, back in 1988, to my experiences of going to
a pain clinic.  With today's technology, I can share my feelings
and know that I will not be criticized.  I can ask for advice and
know that I'll get a response.

I no longer feel like I am alone.  Quite the contrary, I feel
needed. Imagine...I owe it all to something as simple as writing a
message.  Is BBS'ing for everyone?  I personally don't think it
is.  Is it for me? YES!  But, there should be a warning on every
BBS: "Warning!  BBSing is addictive.  Use with caution."

I would like to take this opportunity to say "thank you."  Thank
you for the many hours of laughing, smiling, crying, and
friendship.  This is, indeed, a close-knit family.  And, a family
that I am proud to be a part.

Linda

--
Uucp: ..!uunet!bunker!hcap!hnews!375!34!Linda.Cummings
Internet: Linda.Cummings@f34.n375.z1.fidonet.org




------



Subject: ?
From: Bill.Waller@f140.n150.z1.fidonet.org (Bill Waller)
Organization: FidoNet node 1:150/140 - Black Bag BBS, Wilmington DE


[This is from the Chronic Pain Conference]

I have a neurological condition which causes almost constant pain.
I have gone through all the steps to make sure it is not something
that can be cured including MRI of spine and brain.  I am satisfied
that is not of psychological origin, as everything else in my life
is in good order.

I have tried many treatments including TENS, NSAIDS, and narcotic
analgesics.  The only thing that really works seems to be the
controlled substances.  They help me get back to work and quit
thinking about pain.  I took Talwin-Nx for a while, until it
became depressing.  Now I am wondering whether I should ask for
something else or would I be better off just to tough it out and
learn to deal with it?  If it were just me, I would probably do
just that, but my family and business associates are involved too.
What should I do?

--
Uucp: ..!uunet!bunker!hcap!hnews!150!140!Bill.Waller
Internet: Bill.Waller@f140.n150.z1.fidonet.org




------



Subject: ?
From: Ruthie.Hoffman@f660.n260.z1.fidonet.org (Ruthie Hoffman)
Organization: FidoNet node 1:260/660 - Interstellar System, Vine Valley NY


[This is from the Chronic Pain Conference]

Hiya Bill....

Sorry to hear you're suffering with chronic pain.  I have one
suggestion that has helped me with my ability to live with the
pain. I started a low dosage (50mg./day) of an anti-depressant to
help with the chronic pain.  This is a fairly common treatment I
found out.  I was the one who suggested it to my doctor when I
became tired of using the painkillers all the time.  The low
dosage, according to what I have read and learned from 2 doctors,
helps someone with chronic pain to perceive the pain differently
and help take the "focus" off the pain.  It doesn't decrease the
pain, or change it in anyway, but it changes the way YOU perceive
it, which certainly has helped me to deal with it (READ: live with
it!) much better.  I take VERY LITTLE of the painkillers now and
also use my TENS unit *alot* less than ever.

Anti-depressants in this dosage also help some people to sleep
better, without a narcotic side effect, and a good night's sleep
always helps how you deal with and feel you pain.

The anti-depressant hasn't changed my sleeping pattern much.  At
first I had trouble sleeping...like I had too much caffine (I don't
use caffine at all) or something, but that side effect went away
rather quickly.  The only other side-effect I had for awhile was a
dry mouth, but that has subsided also.  When it was bothering me I
used sugarless lemon drops.  I've been on the anti- depressant
since the beginning of Oct. 1992.  I have some ear-ringing
(tinitus) but the doc isn't saying that that is a side effect of
the drug yet because I also have had a real bad time in the past
month with an ear infection! (fun..wow) ((The ear infection has
nothing to do with my chronic pain (lower lumbar spine injury) or
the medications.))

These minor side-effects certainly are alot easier for me to deal
with than the side effects from the painkillers.  All in all I'd
say that it has helped me to be a more active in my daily life. I'd
say that this is a combination of two things...one, the
anti-depressant is working as was hoped and two, I'm not taking as
much painkiller.

Hopefully this will be of some help to you.  Ask your doctor about
it if you are interested.  If you have access to a medical
database, such as the one on CompuServe, or a medical library, do a
search on chronic pain and anti- depressants for more info if you
need.

take care and Happy New Year...  CULater, Ruthie

--
Uucp: ..!uunet!bunker!hcap!hnews!260!660!Ruthie.Hoffman
Internet: Ruthie.Hoffman@f660.n260.z1.fidonet.org




------



Subject: Chiropractors
From: Linda.Cummings@f34.n375.z1.fidonet.org (Linda Cummings)
Organization: FidoNet node 1:375/34 - Batteries Included, Montgomery AL


[This is from the Chronic Pain Conference]

 > This area has proven to be encouraging and a refreshing difference
 > to what I've been experiencing in the 'real' world.

Yea, ain't it a kick?  [big grin]

 > I recently got to the point that I qualified for handicaped plates
 > for my car. I still can do my job, albeit with dificulty, I just
 > can't walk far or stand very long. The reaction I get from my
 > workmates though was not what I expected, you'd think I was some
 > kind of criminal. Talk about a guilt trip, I guess until you walk
 > in someone elses shoes you can't believe or understand what
 > they're going through.

My neurosurgeon wanted to only sign the form for the "temporary"
handicapped parking placecard.  I asked about a more permanent one,
and he said he didn't think that chronic pain qualified anyone to
really have one.  However, when I went to the Birmingham Pain
Clinic (where they understand a bit more about chronic pain), my
doctor there told me, "Oh, of course I'll sign the form for
you...you're handicapped!"

Sometimes people look at the same problem differently.  And,
sometimes they come to different conclusions.  I knew how difficult
it was for me to walk any distance from the parking lot to a
store.  And, I was lucky to make it back out to the van after
shopping.  I was becoming a danger to myself and others on the
road.  Had I not gotten a sticker, I would have stopped going
shopping by myself because of the danger.

I felt a little guilty for awhile, parking in the handicapped
parking spaces.  But, after some very good advice from people here,
on the Spinal Injury echo, and on the Abled echo, I felt better
about having the sticker.  You and ONLY YOU know how much you
hurt.  People who are not in chronic pain can have absolutely no
idea of how much you hurt. Therefore, they can't understand why you
have a sticker.

I just got a wheelchair to use for when I am outside of the home.
I used it for the first time today.  Maybe that will satisfy
people's curiosity as to why I have a sticker.  But, even without
the wheelchair, I use a cane.  Sometimes, a handicap is not
visual.  Take the attitude that I had to take, John.  Screw 'em!
It's YOUR body and it's YOUR pain.

I must admit that I did have fun on my virgin wheelie trip today.
Went to Walmart to pick up some prescriptions and do a little craft
shopping. I had talked to someone over the phone the other night
and she told me how she shopped and how to handle the wheelchair
and the shopping cart. I did just fine...with just one little bitty
mishap...I got too close to another shopping cart and skinned my
knuckle a bit.  But, I'm proud of myself!

Linda

--
Uucp: ..!uunet!bunker!hcap!hnews!375!34!Linda.Cummings
Internet: Linda.Cummings@f34.n375.z1.fidonet.org




------



Subject: Co-workers
From: Stefan.Welch@p0.f33.n125.z1.fidonet.org (Stefan Welch)
Organization: FidoNet node 1:125/33.0 - BODY DHARMA ONLINE, Oakland CA


[This is from the Chronic Pain Conference]

 -=> Quoting John Polhemus to ALL <=-

 JP> walk far or stand very long. The reaction I get from my workmates
 JP> though was not what I expected, you'd think I was some kind of
 JP> criminal. Talk about a guilt trip, I guess until you walk in someone

 JP,

 I encountered a similar response from most co-workers. Something
 different? something threatening? about the proximity of a hurt
 person. The fragmented nature of the culture seems to inhibit
 compassion. The pleasing part of the story is that there are a
 couple of people who have stuck by even through my losing my
 job. They are the ones for whom I am grateful.  :)

 Unfortunately I'm feeling the pain of double messages from one
 former friend. He keeps saying he wants to be friends and stay
 in touch, but when I talke to him he's always too busy and never
 returns phone calls. I think this is one case where "actions
 speak louder than words" applies. Mostly what hurts is the
 pretense and indirectness of the message when I had thought we
 were closer compatriots. Well, pooh and d$mn, and onwards.

 I hope good things for you in the new year,  :)

 Stefan

... What happens to your fist when you open your hand?

--
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Internet: Stefan.Welch@p0.f33.n125.z1.fidonet.org




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Subject: Re: Toxin Alleviates Spasms
From: Stefan.Welch@p0.f33.n125.z1.fidonet.org (Stefan Welch)
Organization: FidoNet node 1:125/33.0 - BODY DHARMA ONLINE, Oakland CA


[This is from the Chronic Pain Conference]

 -=> Quoting Bob Paddock to All <=-

 BP> This was in our local paper "The Derrick" Monday, 12/21/1992,
 BP> "Toxin Alleviates Muscle Spasms"
 BP> "A toxin that causes food poisoning is now being used to
 BP> alleviate uncontrollable muscle spasms.
 ... etc,

 I also saw a TV program (something on PBS like health-wire) that
 described the process and showed dramatic results for afflicted
 people who underwent treatment. Really works well at least for
 some people.

 - S

... A clean desk is a sign of a cluttered desk drawer.

--
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Internet: Stefan.Welch@p0.f33.n125.z1.fidonet.org




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Subject: Re: headache
From: Stefan.Welch@p0.f33.n125.z1.fidonet.org (Stefan Welch)
Organization: FidoNet node 1:125/33.0 - BODY DHARMA ONLINE, Oakland CA


[This is from the Chronic Pain Conference]

 -=> Quoting Bob Paddock to Stefan Welch <=-

 BP> How do you find a doctor that believes your in pain when MRI's and CT
 BP> scans come back normal?

 Well, Karen, in this case I think I simply got lucky. I
 certainly have worked with doctors who couldn't get their minds
 around it. In those cases, I moved on. Especially never returned
 to the docs who were rude and snide about it. Then my insurance
 coverage changed and I had to pick a new doctor. I tried getting
 references, but that yielded little. So I put in my nickel and
 pulled the handle with a group of affiliated doctors. The guy
 I'm working with was open, not prejudiced; he had worked
 previously with a pain clinic; and he saw me repeatedly, often
 in really bad shape, having horrible pain and still trying to
 hold down my job. With that combination, he believes in my pain.
 On the other hand, a couple of times when he has been away, I
 have called the doctors' group and talked with other of his
 colleagues who have been rude, snide, and disbelieving.
 Encountering that is horribly upsetting and, of course,
 aggravates my ability to handle pain. So I avoid calling when
 my doctor is not there. In the midst of all this pain, I am
 grateful for that doctor. His experience with pain clinics
 helps. Another thing, Karen: When I am doing poorly, I avoid
 sprucing myself up--even though to do so is the natural
 inclination for a trip in the outside world--avoid sprucing when
 I visit the doctor. (You perhaps do this also?) As we have noted,
 "If you look good, people, including doctors, will think you
 must be ok." So I try not to confuse doctors by "faking feeling
 good" as I am more naturally wont to do for most everyone else.

 Happy new year, best wishes and good luck,

 Stefan

... Thesaurus: ancient reptile with an excellent vocabulary.

--
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Internet: Stefan.Welch@p0.f33.n125.z1.fidonet.org




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Subject: Deep Relaxation/Self-hypnosis
From: Stefan.Welch@p0.f33.n125.z1.fidonet.org (Stefan Welch)
Organization: FidoNet node 1:125/33.0 - BODY DHARMA ONLINE, Oakland CA


[This is from the Chronic Pain Conference]

 -=> Quoting Bob Paddock to Stefan Welch <=-

 SW> Heat and deep relaxation (self-hypnosis, sometimes with voice
 SW> or music tapes) help me the most.
 BP> Please tell us more...

 Hi Karen and Bob, and Happy New Year!

 Two areas here:

 Briefly on Heat: electric heating pads, and hot baths/shower.
 Have you seen the recent messages on the Thermophore, an
 industrial strength heating pad? I don't have one, but Shoshona
 and several others here do. (I use an electric pad on a variable
 motor control.)

 On Deep Relaxation/Self-hypnosis--when I got my thoughts together it
 turned up an almost formal short article with some introductory context:

                      DEEP RELAXATION IN PAIN MANAGEMENT

 Needs of a healthy body/mind

 A person afflicted with chronic pain, just as any other person, has
 physical and soulful hungers that yearn to be filled for best possible
 health. Basically, people orgainsms need food, shelter, and sleep.
 Extended needs include  freedom, self-expression, sex, flirting,
 intimacy, love, hugs, exercise, humor, laughter, friends, family,
 independence, solidarity, music, art, relaxation, enjoyment, work,
 contribution, giving, receiving.... For a person in pain, many of these
 fulfillments are elusively hard to include in life. Stress from pain can
 interfere. Deep relaxation and meditational techniques can help.

 Stress engendered by pain

 High stress (and accompanying loss of self-value) consistently confront
 people facing chronic pain and disability. Since stress-anxiety and
 relaxation are mutually exclusive, techniques that promote deep
 relaxation can ease feelings of stress, anxiety, and panic. Relaxation
 also releases endorphins, the body's natural compounds that biochemically
 act to help reduce pain (Other endorphin triggers: exercise, music, sex,
 laughter). Relaxation processes can also help a person attend to bodily
 pain and focus on smoothing pain loci.

 Relaxation and meditation techniques

 Meditation, Buddhist "sitting," Yoga, Tai Chi, Autogenic relaxation,
 Progressive relaxation, Biofeedback, Hypnosis, Self-hypnosis, Guided
 imagery, Expansion/Contraction mental exercises, Visualization. I have
 listed here a number of meditational or self-hypnosis techniques that I
 have worked with. In my experience these appear substantially similar
 though not wholly identical in their processes. Basic ideas of attending
 to within oneself, noticing bodily sensations and thoughts, maintaining
 quiet, and enhancing relaxation pervade them. To one degree or another
 they fall along a continuum whose furthest point might be considered the
 mental skills of a Yogi who learns to control heartbeat, bodily
 temperature, metabolic rate, and thought processes to a high degree. (My
 experience has certainly not taken me that far.) I have rarely talked
 with people about this as I think I held some ideas that meditation was
 too weird, too far out, too crazy. Those I did talk about it with held it
 not so reverently and so the conversation was strained. I had not
 considered until now: perhaps this is my religion. For me the process
 involves a deep relaxation to the point where I cannot feel the weight of
 my body. It includes a shift in mental perspective that I can best
 describe as feeling removed from myself and observing, perhaps from par
 away. My perception of pain changes and the associated anxiety and panic
 decreases markedly. I often use tapes of peaceful music or a person
 giving relaxation or visualization suggestions. Michael Rooney gave a
 fine description in a message here not long ago:

  -=> Quoting Michael Rooney to Stefan Welch <=-

 MR> ... I'll expand it from my own
 MR> experience but as I told Cindy there are probably people here a lot
 MR> more qualified to speak to this than me.

 MR> Have you ever daydreamed and lost track of time? Or just stared out in
 MR> space and sort of lose yourself? Have you ever been driving and lost
 MR> track of what is happening as the roadway hypnotizes you, especially on
 MR> a warm day with pretty scenery around you. That is really what I am
 MR> talking about only it is done with you controlling what is happening.
 MR> Sort of self hypnosis. Usually I would lie down an close my eyes and
 MR> concentrate on relaxing my body starting with the feet and legs and
 MR> then the hands and arms until I was totally relaxed. Then I would
 MR> concentrate on a pleasant place to be, maybe a lake side or a quiet
 MR> place in the woods with the warm sun shining down on me. I would try to
 MR> feel the sun's warmth all over me and hear the sounds and look at the
 MR> beautiful surroundings. Just a place where I felt peaceful and safe. I
 MR> would focus on that and lose all contact with where I actually was and
 MR> the pain I had. Instead I was focusing on pleasant surroundings and the
 MR> peace and calm it brought. This would last only 15-30 minutes but when
 MR> I "came to" I would feel refreshed and the pain would have lessened
 MR> from the decrease in stress. Plus, I had spent that time totally pain
 MR> free in my mind. Actually I hadn't done it in quite a while but since
 MR> writing to Cindy I have gone back to trying it and enjoying the
 MR> benefits. There are books about how to do this and it really isn't
 MR> hard. You just have to concentrate on the place you want to be and feel
 MR> all the sights and sounds around you in your mind. Feel the warmth of
 MR> the sun. Smell the flowers or the water. Hear that brook. With a little
 MR> practice it can be done almost at will sitting or laying down.

 MR> I can only tell you it works for me and the time away from the pain is
 MR> a real pleasure. It works better than any pill. Almost makes me feel
 MR> normal for a while.<G> Take care, Mike...And Happy Holidays, Enjoy
 MR> them!

 MR> -!- WM v2.05/91-0233
 MR>  ! Origin: AirBoat OnLine BBS (713) 855-6724 (1:106/737)

 Thank you, Michael. :)

 I'm glad you asked about this, Bob and Karen, as it has prompted me to
 focus more on the process and give it more validity in my pain management
 processes. I'd be happy to talk in further detail about any of the
 relaxation processes listed.

 Best wishes,   :)

 Stefan

... If it wasn't for C, we would be using BASI, PASAL and OBOL!

--
Uucp: ..!uunet!bunker!hcap!hnews!125!33.0!Stefan.Welch
Internet: Stefan.Welch@p0.f33.n125.z1.fidonet.org




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                  End of Issue # 3095 of the Handicap Digest

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