X-Mailer: ELM [version 2.3 PL11]
Approved-By:  Bill McGarry <wtm@SHELDEV.SHEL.ISC-BR.COM>
Newsgroups: bit.listserv.l-hcap
Date:         Mon, 11 Jan 1993 02:01:34 EST
Reply-To:     Bill McGarry <wtm@sheldev.shel.isc-br.com>
From:         Bill McGarry <wtm@sheldev.shel.isc-br.com>
Subject:      Handicap Digest # 3088

                             THE HANDICAP DIGEST

                                 Issue # 3088

                          Sunday, January 10, 1993

Today's Topics:


                                ******


                                Re: headache
                          Re: Trochanteric Bursitis
                                Re: Your Pain
                             Re: Pain/Well Said
                                Re: Our Pains
                                    pain
                              Re: Getting SSDI
                                Getting SSDI
                                    pain
                                Re: Shingles


                                ******


To subscribe to the Handicap Digest mailing list or have your
thoughts in the next issue, please send electronic mail to
Bill McGarry at any of the following addresses:


UUCP:       uunet!bunker!wtm
INTERNET:   wtm@bunker.shel.isc-br.com
BITNET:     l-hcap@ndsuvm1.bitnet
Fidonet:    The Handicap News BBS (141/420)   1-203-337-1607
            (300/1200/2400 baud, 24 hours)
Compuserve: 73170,1064

                              Bill McGarry (Moderator)
                              (203) 337-1518



------



Subject: Re: headache
From: Keith.Jones@p13.f15.n114.z1.fidonet.org (Keith Jones)
Organization: FidoNet node 1:114/15.13 - <Stat Gateway Servi, Phoenix AZ


[This is from the Chronic Pain Conference]

 Sorry to take so long to get back to you. I am building a house among
 other things so I have not been reading messages the way I used to at
 one time.

 BP>         Its been over three years now since my car accident. I would be
 BP>         interested in hearing what you have to say about treatments
 BP>         that are not part of the medical avenue. I'm open for
 BP>         suggestions.

 I have unsuccessfully tried chiropractors, kinisiologists (people who
 move muscle around) and pain management clinics (though from what I now
 know, my problems were not properly addressed at any of them---there
 are bad pain management clinics). I had an appointment for accupuncture
 but the doctor called back and said that she did not want to treat me
 with my condition (I am a quadriplegic).

 BP>         I did use a TENS unit for about nine months.  I wore it all of
 BP>         the time except when I was sleeping, because I got 100 percent
 BP>         pain relief for about six months with it (that was a mistake
 BP>         because I depended on it, and I got used to it, so then it was
 BP>         no longer effective).  This all happened approximately 18 months
 BP>         ago.

 I get fairly decent relief from a TENS I use on my foot. I only wear it
 at night and sleep with it until morning. It has helped me for almost
 two years now. That is, my foot pain. Sorry to hear that yours had
 become ineffective, but I have heard the same thing from others.

 BP>         I tried putting it back on about four or six weeks ago and it
 BP>         gave me 100 percent relief again.  If I should decide to wear it
 BP>         again (I might), it would ONLY be for short periods of time
 BP>         because I would be worse off if I wore it more than that.

 Sounds good.

 BP>         My chiropractor took X-rays a couple of weeks ago.  He said that
 BP>         is showed that the top three vertibra are locked in a forward
 BP>         position and that the cervical vertibra are twisted sideways.
 BP>         The vertibra did not grow that way because I have X-rays of my
 BP>         back and neck that were taken three months before the accident.
 BP>         Those vertibra are in an almost normal position in that X-ray.
 BP>         However ALL of the other tests, MRI's, CAT scans, etc show
 BP>         everything as normal.

 To my understanding, X-rays show bone, whereas MRI's and CAT scans show
 softer tissue such as discs and spinal cords and nerves. There is also
 a false positive reading on about 25% of all MRI's. This means they can
 show a problem in a person who does not have a problem. The X-rays show
 a problem with your vertebrae.

 I don't know what your relationship is with your chiropractor is but I
 can tell you that despite all the back problems I have had (also with
 no conclusive diagnostic evidence--X-rays, MRI's, etc.), I have not
 been to a chiropractor who did not "see" something that the doctors
 missed. Their manipulations never helped and years later with no
 treatment other than exercise, my back has gotten much better. I think
 chiropractors are no different than any other profession, you will find
 good and bad ones out there. I have found the ones I went to to be
 rather unethical and interested only in the money.

 BP>         I do have days where a feel really down and think of killing
 BP>         myself.  As for anti-depressants, I think I've tried about all
 BP>         of them and I have gotten unwanted side effects from them.

 I think all drugs have some unpleasant side effects but I have quit
 taking antidepressants in the past due to grogginess and dry mouth. I
 took Desyrel (Trazadone) which studies have shown to be one of the
 antidepressants that is ineffective against pain and quit it due to
 extreme grogginess in the morning and a terribly dry mouth. I also took
 Elavil (amitriptyline). I now take Pamalor (Nortriptyline), which I
 have found to be very effective in changing my perception of the pain.
 I only take 25 mgs. at night which is a very low dose (therapeutic dose
 for depression my pharmacist told me is 150 mgs. daily). It does dry my
 mouth out but I have gotten used to it. It disappears by noon. The drug
 will not immediately take effect, it takes about 3 weeks to get into
 your system. Same is true of Elavil. As far as side effects, only you
 can be the judge as to whether the benefits outweigh the side effects.
 When I took the Desyrel (which was not helping anyway and even if it
 had), I could not deal with the side effects. With the Pamalor, it is
 well worth it. You may want to ask your doctor about it, as I have
 talked with several others who have gotten relief from a low dose for
 various chronic pain problems. It is worth a try and IMHO, does not
 have as many or as powerful side effects as other drugs I have tried.

 BP>         When I use my computer, like I am right now typing this message.
 BP>         I lay on the floor and hold my computer with my legs.  I have a
 BP>         notebook computer so I can be in this position.  In this
 BP>         position I really do not have much if any pain.

 I bought a laptop so I can lay in bed without back pain and type.

 One more thing I found helpful was visiting a hypnotist. I don't know
 exactly what he did, but my life and my pain has improved
 significantly. I think it helps if you find the right hypnotist. I wish
 you luck.

-Keith-

--
Uucp: ..!uunet!bunker!hcap!hnews!114!15.13!Keith.Jones
Internet: Keith.Jones@p13.f15.n114.z1.fidonet.org




------



Subject: Re: Trochanteric Bursitis
From: Keith.Jones@p13.f15.n114.z1.fidonet.org (Keith Jones)
Organization: FidoNet node 1:114/15.13 - <Stat Gateway Servi, Phoenix AZ


[This is from the Chronic Pain Conference]

 JG> In a message to Shoshona, you wrote that you had pain in
 JG> your hip due to muscle atrophy.
 JG>
 JG> I was surprised to learn that atrophy causes pain.  My
 JG> right leg and foot are well on their way to becoming
 JG> "sticks", and I guess I've been fortunate in this regard.
 JG>
 JG> Do you know the mechanism by which atrophy can cause pain?

 This is my opinion and I think it makes good sense. The muscle in my
 buttocks and hip has atrophied in one area on one side of my bady so
 much that instead of holding the hip in place and supporting it with
 muscle, it has allowed it to move too freely around the joint thereby
 irritating the bursa. Though I am a quadriplegic I have fairly good
 sensation below the level of my injury so I can feel things pretty well
 down there. Neither the doctors nor I can find any other way to explain
 the pain. It came about and shortly afterwards, I noticed the
 significant indentation in my hip. An MRI showed loss of muscle. An
 injection of cortisone in the bursa gave me relief for awhile. It
 bothers me now periodocally in the cold weather but not nearly as much
 as it used to. Then again I stretch and exercise every day now.

-Keith-

--
Uucp: ..!uunet!bunker!hcap!hnews!114!15.13!Keith.Jones
Internet: Keith.Jones@p13.f15.n114.z1.fidonet.org




------



Subject: Re: Your Pain
From: Keith.Jones@p13.f15.n114.z1.fidonet.org (Keith Jones)
Organization: FidoNet node 1:114/15.13 - <Stat Gateway Servi, Phoenix AZ


[This is from the Chronic Pain Conference]

 JG> In you message to Patti Bader, you spoke about weather and
 JG> its effects on pain.
 JG>
 JG> I think this is somewhat fascinating, and I would think
 JG> that someone has surely done a bit of research into this.
 JG>
 JG> It seems to me that if a person (or preferable a whole
 JG> group) who suffers from chronic pain that also gets relief
 JG> from the same kind of weather changes, a researcher could
 JG> study this and find out WHY.
 JG>
 JG> This could lead to advances in pain relief/management.
 JG>
 JG> Just my .02 :-).

 I have long wondered why this has not been adaquately addressed by the
 medical establishment. Pain is good business and if it were as simple
 as moving to another area, well where is the money in that treatment?
 I moved from Ohio to Arizona for no other reason than the pains I had
 were killing me and seriously making me consider killing myself. I
 could not have made a better move. I still have pains for three months
 here in Phoenix (Dec-Feb) but nothing nearly as bad as what I used to
 endure.

 I have tried to figure out what kind of weather triggers severe muclse
 spasms I get. I know cold, damp weather is the worst. For pain too. Yet
 every now and then I will have a good day during a cold rain. Go
 figure. I have even heard people mention barametric pressure as a cause
 and followed this unsuccessfully without any pattern. Yes, there's
 definitely some correlation between pain and weather but what it is, I
 have no idea. Anyone else?

-Keith-

--
Uucp: ..!uunet!bunker!hcap!hnews!114!15.13!Keith.Jones
Internet: Keith.Jones@p13.f15.n114.z1.fidonet.org




------



Subject: Re: Pain/Well Said
From: Keith.Jones@p13.f15.n114.z1.fidonet.org (Keith Jones)
Organization: FidoNet node 1:114/15.13 - <Stat Gateway Servi, Phoenix AZ


[This is from the Chronic Pain Conference]

 SB> Quite true... if only the world had compassion for people
 SB> in chronic pain the same way that they have compassion for
 SB> the suffering in Somalia (not to take away from their
 SB> suffering). Suffering is suffering - and compassion should
 SB> never be relative, it should always be freely given to ALL who suffer...

 Maybe if we could round up all us chronic pain sufferers in one place
 and get media coverage so that pain had a face, people might have
 compassion. I think, however, for the most part, pain touches a part of
 other people who are not in pain that makes them not want to believe.
 For one, it could be them. People rarely want to face their own
 vulnerability. Second, it underscores the failures of the
 medical profession to be able to solve a problem. People want to
 believe that any pain can be "fixed" if you just see a good doctor. A
 person with chronic pain that can't be treated shoots down the "hero"
 role that most people feel doctors serve. Afterall, they see doctors
 replacing hearts, kidneys, livers and even bone marrow. These doctors
 are so good at what they do, that it is easier and fits in better with
 a person's psyche to believe the victim must be the problem.

 With hunger the solution is simple; with pain it is quite complex. The
 media can show the food being delivered and eaten and helping. They
 can't do the same with pain. Unfortunately, I guess pain is an unpopular
 war. :(

-Keith-

--
Uucp: ..!uunet!bunker!hcap!hnews!114!15.13!Keith.Jones
Internet: Keith.Jones@p13.f15.n114.z1.fidonet.org




------



Subject: Re: Our Pains
From: Keith.Jones@p13.f15.n114.z1.fidonet.org (Keith Jones)
Organization: FidoNet node 1:114/15.13 - <Stat Gateway Servi, Phoenix AZ


[This is from the Chronic Pain Conference]

 LC> I know what you mean, Keith.  If I might add, you sound
 LC> like you're getting a bit depressed, and I know it's
 LC> probably because you're away from your family.  Please
 LC> know that you are in my thoughts during this time, and
 LC> that I do care about you.

 Not really depressed. More like lonely. I am so busy with building this
 house and everything else. I have not really been thoroughly depressed
 now for over a year. Always remember that I also think and care about
 you also. Like many others I've met here or elsewhere, you're always in
 my prayers.

 LC> On another subject, though, I just have to tell you that
 LC> I've now used one of the provided wheelchairs at Walmart
 LC> twice now by myself!  I'm so proud of me.  Everyone is so
 LC> helpful when I can't reach something.  But, I have learned
 LC> a trick.  If there is clothing hung on a high rack, and I
 LC> can't reach it, I can take my cane and lift the hanger off
 LC> the rack and bring it down to me!  Invention is the mother
 LC> of necessity (or something like that), right?

 I've got a quickie with swing-away arms which also come off. I usually
 ask somebody to reach something that is too high for me, but if nobody
 is around and I don't feel like waiting, out comes my arm and then I
 can knock a can or box down from the top shelf with one hand and catch
 it in my other hand (if I'm lucky, my left hand is very weak and not as
 good at catching things as it was before the injury when I was a
 juggler (3-4 balls, clubs, axes, torches, etc.). I once was a man of
 many talents, now a man of only a few.

 LC> Only one problem when I'm wheeling myself (or even when
 LC> Eddie or a friend is with me).  My dern tailbone just
 LC> aches by the time I'm finished shopping and I can hardly
 LC> walk out to the van.  I think I'm going to see about
 LC> getting a Roho or Jay even before I pursue getting a
 LC> wheelchair for myself.

 LC> BTW, what kind of cushion do you use again?

 I have a ROHO and would highly recommend one if you are having those
 kinds of problems. They're expensive (about $300) but hopefully, your
 insurance will pay for it. Beats having a pressure sore which I have
 not had so far in 8+ years. Happy Holidays.

-Keith-

--
Uucp: ..!uunet!bunker!hcap!hnews!114!15.13!Keith.Jones
Internet: Keith.Jones@p13.f15.n114.z1.fidonet.org




------



Subject: pain
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]

 > I wish my father could feel the pain I've been having for the pain
 > 6 months. Then he'd shut his trap about self-pity and everything
 > else.

I wish there was a machine that TAB's could have attached that
would mirror our pain into their bodies.

 > I'll be going home to Brantford in less than a week (away from my
 > friends and modeming) and boy, do I feel stressed!

How long will you be away, Michelle?  We'll miss you.

 > I finally told
 > my mother point-blank how bad the pain is. (I don't know if she's
 > told my father, I hope she hasn't)

Heck...I'd be jumping up and down (if I could) and screaming to
your parents how much pain you endure all the time.  Don't keep
nothing away from your parents.  They love you, but they don't
understand what you're going through.

I think a lot of parents don't want to know.  From personal
experience, I know that my mom doesn't understand my pain at all.
She's been having some shoulder problems, and went to the doctor
the other day. When she got home, she told me, "I might have to
have surgery!"  (Like it was exciting to her.)  In my opinion,
she's trying to get sympathy from my dad (who might also have to
have his other knee replaced soon...but sure isn't crying about
it).

 > In any case, she could be
 > coming down with my father and I'm afraid I'll have two people
 > yelling at me in the van instead of one.

Grin and bear it, Michelle.  Our parents feel we "owe" them our
presence sometimes, and we just have to go along with it whenever
we can.  I keep thinking that some day I won't have my parents
around me, and then I'll be sad (despite all the sh*t I put up with
from my mom).

 > One thing's for sure. This is going to be the LAST time I'm ever
 > going home.

Now, you never know.  I've known lots of people who were "on the
outs" with family and as time went on, they became somewhat
closer.  When your parents become PWD's, they'll finally realize
what it's been like for you, and that's the time that they'll need
your understanding and for you to accept their apology (that will
most likely be given in a simple statement like, "I know now what
you've been going through all these years.")

 > I'm going to be looking into getting into a special
 > apartment in Ottawa, and I continue my studies part-time so the
 > government will cover tuition. At least that way, my dad can't
 > gripe about paying for my education when I won't even come home!

Hehe...is he *really* that bad, Michelle? [grin]  And, is this
something that you *want* to do?

 > Yes, I'm hiding from him. But I'll tell you this:I can't sleep, my
 > apetitite's gone and I just want to call up my parents right now
 > and tell them I'm not coming home for Xmas.

It's anxiety.  It's the holiday season.  A LOT of people get
depressed around the holiday season.  Hummm...I wonder if it's
because "family" gets together?  [giggle]

 > I sound crass and ungrateful, but I don't know whether to scream
 > or to just take every last Tylenol, Macrodantin and Naproxen
 > tablet in my possession and crawl into bed to await the end.

Oh, don't do that...you won't have the satisfaction of being mad at
them anymore.  [grin]  Get a big old pillow with nice sturdy seams,
and bury your head in it and scream until you turn blue in the
face.  Now, if this doesn't make you laugh just thinking about it,
I give up!  ;-)

 > To use an eloquent phrase of a friend, I'm "lone".

No, you are not alone, Michelle.  You may be alone physically, but
certainly not mentally.  We here on this echo know what you're
going through and that makes us a family of our own.  We're just a
long distance family, that's all.

Well, I'm glad you got all that out of your system!  Sounds like
it's been needing to come out for quite some time now.

Linda

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




------



Subject: Re: Getting SSDI
From: Michael.Rooney@f737.n106.z1.fidonet.org (Michael Rooney)
Organization: FidoNet node 1:106/737 - AirBoat OnLine, Houston TX


[This is from the Chronic Pain Conference]

RE>From: rerickso@cwis.unomaha.edu (Ronald Erickson)
RE>Index Number: 26713

RE>I think I found a ALJ who was tough.  However, my rheumatologist
RE>did not advocate I take a stab at it.  I was complaining to
RE>my Congressman about it so he told me to go for it.  As I
RE>understand it, the only reason(s) I could not qualify was because
RE>of my age and I am not in constant pain.  I do have an unstable
RE>back joint, and pointed it out.  I have half as much mobility
RE>in my back as I should due to systemic Ankylosing Spondylitis.
RE>I have heard from someone in Job Service that he thought it
RE>is government politics since 1980 which was working against me.
RE>It could be, too, I am under 50 years of age and have been making
RE>less than $1000 a year so I would be qualified for SSDI for certain.
RE>I might have had better success if my rheumatologist was all for it.
RE>If I would not be able to borrow money from my parents to attend
RE>higher education, I am certain it is seen to my situation would
RE>fall through the cracks.

RE>Ron

One of the keys is having your own doctor on your side, enthusiastically.
I had two and I am sure their statements plus the medical records they
supplied had a very positive effect on my case. I was 48 when I applied
and an attorney I saw said that my age was one factor working against me.
The fact I had only one major surgery was a second. I got a copy of the
SS regs covering Ankyloysing Spondylitis and went through them very
carefully to see what the requirements were for disability. You can check
their requirements against your physical condition and from the
qualification section have a pretty good idea of where you stand. Then you
can decide if you want to proceed or not. I probably got lucky because my
case dragged out for two years and by the time I got before I got before
a hearing judge I had turned 50 and that did and does make a difference.
The fact that I was unemployable and in constant pain with limited
mobility would have meant nothing without that birthday. Unfair?, yes!, but
that is the way the law is structured. But first things first. Your doctor
has to be on your side because their doctor definitely is not. Good luck
and take care, Mike...
 ~ SLMR 2.1a ~ Hey! Don't pick up that phoW/;a  =CRg   NO CARRIER

--
Uucp: ..!uunet!bunker!hcap!hnews!106!737!Michael.Rooney
Internet: Michael.Rooney@f737.n106.z1.fidonet.org




------



Subject: Getting SSDI
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]

 > The fact that I was unemployable and in constant pain with limited
 > mobility would have meant nothing without that birthday. Unfair?,
 > yes!, but that is the way the law is structured.

You know, no one mentioned anything about my age to me when I was
denied twice before I went in front of a judge.  How long ago was
this, Michael?  I'm just glad that the judge was a fair person.  He
told me that he knew if I could work, I would be working and that
he believed both me and my husband about what limited mobility I
have.  My lawyer said it was the best decision (in writing) that he
had ever seen.

 > Your doctor has to be on your side because their doctor definitely is not.

Amen!

Happy Holidays!
Linda

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




------



Subject: pain
From: Arthur.Saus@p160.f72.n376.z1.fidonet.org (Arthur Saus)
Organization: FidoNet node 1:376/72.160 - Mail Room, Columbia SC


[This is from the Chronic Pain Conference]

Hello Orville!

12 Dec 92, Orville Bullitt writes to Bob Paddock:

 OB> I couldn't agree with you more, Karen! How do we quantify pain to someone
 OB> else? It is darned near impossible to do so.

That's true also for Physicians who work in pain management.  There
are many different methods used to attempt to quantify pain, but
there is no perfect way to do that.  Pain is a SUBJECTIVE
experience, not something we can OBJECTIVELY measure.  That is one
of the major problems for us when trying to evaluate pain and
therapies for pain.

Arthur

--
Uucp: ..!uunet!bunker!hcap!hnews!376!72.160!Arthur.Saus
Internet: Arthur.Saus@p160.f72.n376.z1.fidonet.org




------



Subject: Re: Shingles
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 Steve Ambrosini to You <=-

 SA> My father recently has been diagnosed with Shingles. He is about 70
 SA> How long does it take to recover from Shingles?
 SA> Might this be a premanent condition?
 SA> Is there any other medication that might help?
 SA> Any other suggestions?

 Haven't had shingle myself (which I receive gratefully), but in
 tracking down paing management I ran across a research program
 that was being run at U.C. San Francisco on post-herpetic
 neuralgia, the pain resulting from shingles viral damage to
 nerve cells. The doctor running the study, Howard Fields,
 was quoted in an article (Feb 1992) as having developed some pain
 management strategies that were effective in many cases (from
 complete disability with pain to being able to sleep and get
 around again). At the time, they were accepting patients into
 the research study. I haven't followed developments since then.
 UCSF Pain Management Center: 415-476-0418.

 Hope this helps some,

 Stefan

... Catch the Blue Wave!

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




------






                                ******

                  End of Issue # 3088 of the Handicap Digest

                                ******
Comments: Gated by NETNEWS@AUVM.AMERICAN.EDU