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Approved-By:  Bill McGarry <wtm@SHELDEV.SHEL.ISC-BR.COM>
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Date:         Mon, 11 Jan 1993 16:50:28 EST
Reply-To:     Bill McGarry <wtm@sheldev.shel.isc-br.com>
From:         Bill McGarry <wtm@sheldev.shel.isc-br.com>
Subject:      Handicap Digest # 3090

                             THE HANDICAP DIGEST

                                 Issue # 3090

                          Sunday, January 10, 1993

Today's Topics:


                                ******


                                    pain
                                  headache
                                  your pain
                                  Re: Pain
                              Re: Russian Stim
                                Re: headache
                                Little pills
                              Re: Getting SSDI
                              Re: Getting SSDI
                              Re: neck problems


                                ******


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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]

In a message to Orville Bullitt:

 > 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.

As we were told at the Birmingham Pain Clinic, men and women's
levels of pain are different also.  While a man can handle
temporary excrutiating pain, it's the women who can handle the
chronic long-term pain better.

Happy Holidays!
Linda

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




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Subject: headache
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]

Hi Karen!

 > is probably against the rules of the bbs.  He makes the calls from
 > work. The boss knows he does it.

That explains it.  No problem here, Karen...just keep on doing the
way you are.  Who knows...maybe Santa will be good to you guys and
you can get a computer of your own and do all this from home!  ;-)

 > Have you ever heard of anybody whose back surgery was successful
 > for more than a few years?

Yes, I have, Karen.  But, it was usually after a fusion was done.
I've often wondered why the first neurosurgeon never removed the
whole L4/L5 disk and why a fusion was never done.  He just said,
"It'll fuse itself together in about a year, so don't do anything
to hinder this process." Then, about 7 months after he did the
surgery,  he did of a heart attack!

 > I don't know if the Spinal Cord Stimulator would be a good idea or
 > not. Anything that would take the pain away would be a good idea.

Just keep it in mind in case someone mentions it to you...or, you
get to the point where you go to a neurosurgeon and mention it to
him/her.

 > But right now I am going to a chiropractor who is working on restoring
 > the alignment in my neck.

Well, most people don't really have good results with a
chiropractor, but there's always that tiny percent that do.  Good
luck, and here's hoping that you're one of them.  Myself, it didn't
do any good and I went for about 85 sessions!  One good thing did
come out of it, though, he wrote the letter that helped me get my
SS Disability.

 > Will you get scar tissue around the incisions
 > for the Spinal Cord Simulator?  I will keep the idea in my mind
 > though.

Yes, whenever an incision is made, there's always scar tissue.  :-(

 > I did read scs-lc.zip.

I'm glad you got it and read it.  Neat what they can do now, huh?
Did you (or Bob) or the sysop also get the "Clinic.zip" file?  It
might help you learn some relaxation techniques that will in turn
help the pain.

 > When I was trying different anti-depressants I did take them at night
 > before bedtime.  They did not interfere with me getting a good nigts
 > sleep.  I almost always get a good nights sleep because when I lay
 > down in any position the pain goes away.

The anti-depressants are used in chronic pain patients to help them
sleep.  I know it works for me now.  But, if you can get relief
from laying down, then that's good!

You and Bob have a wonderful Christmas!

Happy Holidays!
Linda

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




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Subject: your 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]

 > When I was very sick with cancer, people would always tell me that
 > I couldn't be sick because I looked so good.  I'd just say, "well,
 > this is what a person with cancer looks like."

I don't know what people expect to see when someone has a
disAbility, but I guess they (the TABs) don't realize that we PWDs
are just plain old human beings, too.  It's just that some of us
limp, walk on crutches, roll in a wheelchair, use a cane, etc.

 > I also liked the
 > people who would tell that I was much too young to be so sick.
 > Gee, I wish I could have waited, but life decided otherwise!

ROFL...I'll have to remember that one!

 > I feel sorry for people who are always so healthy, they have no
 > concept of what it's like and can not be sympathetic.

Boy, have YOU hit the nail on the head!  My mom found out today
that she has scoliosis (curvature of the spine) from one leg being
1-1/8" shorter than the other one.  She's lived with this all her
life, and *knew* she had one leg shorter.  All of a sudden, her
spine is the worst curved spine in history!  I didn't even tell her
what my spine looked like in the x-ray at the doctor's office.

 > I see all
 > the compassionate people on this echo and know that we have all
 > gained something.

We sure have, Kathleen!  Maybe I should put my message on here
about what BBS'ing means to me, again.  I wrote it some time ago
when I first discovered this echo (about a year and a half ago) and
it would still apply today.

Happy Holidays!
Linda

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




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Subject: Re: Pain
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 Linda Cummings to Joe Rhinehart <=-

 > That's one major disadvantage we have. Even if someone DID take me
 > up on my rather drastic example, at least they would eventually
 > recover. We can't - at least not 100%, and in some cases much less.

 LC> I know, Joe.  And, what really gets me, is the fact that Chronic Pain
 LC> is not dealt with more in medical school.  It's like, "Ok, if you get

 I read some articles from a Nursing oriented newsletter
 (articles mostly by nurses in various aspects of the profession)
 awhile back: One of the major concerns written about was that
 they (nurses) feared encountering an illness that
 involved long term pain. They were saying that doctors generally
 have a blatant disregard (probably misunderstanding) of pain,
 and that the American medical community fears pain medications so
 much (let's be careful not to make addicts of our terminally ill
 patients) that even as nurses, they would not be able to get the
 care and medication needed to manage the pain. Yikes!

 Ok, I'll get off my soapbox now. :) It does rile me, but I know
 there are good and caring doctors who educate themselves about
 pain after they've finished medical school. The doc I'm working
 with spent some time getting experience in a pain clinic.

 Toodle-oo,
 Stefan

... Catch the Blue Wave!

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




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Subject: Re: Russian Stim
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 Darlene Strand to Karen (Bob Paddock) <=-

 DS> it starts all over again. This pain is definitely real, but I now have
 DS> to work on the fear of doctors as this fear makes me so physically ill
 DS> that my heart beats so fast that it seems to beat to where I can see
 DS> my shoulders jerk with each heartbeat.  I know I'm being silly at my
 DS> age, but what's real is real and if you should happen to have any
 DS> suggestions, please tell me. Thanks and hope to hear from you soon.

 Darlene,

 I haven't talked with you yet. Your comments on fear of doctors
 caught my eye.

 Maybe not so silly at your age: I'm "a growed up" person too
 (just turned 40 a few days ago), but I get nervous, and tense,
 and stilted, and have trouble speaking in clear English when
 I go to the doctor. I hate going to hospitals and clinics.
 But maybe with good reason. Like Pavlov dogs, I feel like I've
 been conditioned to a cold sweat from repeated unpleasant, nasty
 procedures at the office and from some doctors who cock their
 heads into a patronizing look of disbelief. (You too? Any of
 this sound familiar?)  Plus, the movement, time being up, and
 bumping around in a car all aggravate symptoms. Yea-ya, I get
 nervous.

 Some things that have helped me: I go with a trusted person
 or talk to such a person before going. I review
 all the things I can think of to talk to the doc about and
 prepare answers to things the doctor may ask. And I write it all
 down. And I take it with me and refer to it when talking with
 him/her. I plan to NOT arrive early at the office where I may then
 need to wait; the waiting generates nervous dribbles from my
 armpits down my sides. Great fun.   :^)   (If the doc is far
 behind schedule, I leave and come back later.) I take a book of
 easy reading escapist literature and/or stuff my stuffed animals
 (usually Fred, the rabbit) into my bookbag. If the next appointment
 is just for routine review, I'll delay settin it up, so I don't
 have to face so many of them. The whole idea is to get in and
 out with the least aggravation of pain.

 Well, this is how it goes for me. For you, things will doubtless
 be at least somewhat different. Although I'm not encouraging it,
 fear of doctors seems reasonalby "normal" to me. Not silly. But
 then, maybe I'm a crazy person?: I don't go for sky diving or
 bungee jumping either.   :)

 Does any of this help? Best wishes, take care,

 Stefan

... Catch the Blue Wave!

--
Uucp: ..!uunet!bunker!hcap!hnews!125!33.0!Stefan.Welch
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 Keith Jones <=-

 BP> This isn't Bob writing this message it is his fiance, Karen
 BP> Shettler,  I am the one that was in the accident.  He uploads
 BP> it for me.

 BP> Its been over three years now since my car accident. I would
 BP> be 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.

 Karen,

 Sorry to hear you're in pain; glad you could join us. Some
 comments about avenues that I've pursued:

 For chronic pain I've pursued a number of routes: TENS,
 inplanted electrodes, acupuncture, medications, haven't helped
 for me, but work well for other folks. Ice packs, cortisone
 injections, chiropractic treatments have made things worse. A
 few times, lidocaine injections along nerves have helped stop
 crisis pain situations. Heat and deep relaxation (self-hypnosis,
 sometimes with voice or music tapes) help me the most. Not
 moving generally helps, except that experimenting with create
 light exercises to increase circulation and avoid getting stiff
 is better; a balance between staying still and moving some. What
 has definitely helped has been working with a doctor who takes a
 soft, non-radical approach to pain management: "pain is tricky,
 so lets take it slow and easy, not mount radical invasive
 procedures that carry probabilities of aggrating it." For me,
 this has worked the best.

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

 I've also experimented with ways to minimize the pain of using a
 computer (necessity is a mother ... ?) <grin>. I got a notebook
 which turned out to have too much weight at just the wrong
 points, so now I use a regular desktop computer on a caddy--
 sort of like a high TV holder--with just the keyboard on my lap
 on a pillow as I lie down almost flat. The computer screen is
 high enough so it looks down at me a bit. (I contemplated
 hanging it from the ceiling, though that has not proved
 necessary.) The other item that has helped immensely is a
 headset for the phone. Light-wight, no-hands phone use saves the
 neck, ears, elbows, wrists. I've gone a little wild wiring
 myself to the planet with technology: the computer not only
 dials the BBS, but also a separate voice line (with the
 headset), so that I can make and receive calls while BBSing or
 perusing the on-line card catalog at the local library.

 Well, a few thoughts and ideas. Hope some prove interesting or
 useful.   :)

 Best wishes for the holiday season,

 Stefan

... Catch the Blue Wave!

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




------



Subject: Little pills
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]

Linda,

Somewhere along the line maybe I got confused about time-of-day
recommended for anti-depressants? Maybe my other message
misunderstood what you were saying?

I've been trying out Flexeril to help with sleep. It works if I
time it right in the late PM for about 4 days and then I begin to
notice that I feel depressed. So I quit and my mood improves as
my sleep does not until the poor sleep makes me cranky. Snarl.
Grunt. :) Does your "Pill Book" say anything about Flexeril?

So much for that. Diversion: And now for more humor of house and
home. Though I live alone, I've recently begun a mouse relocation
service. Evidently the winter weather has driven the small
critters to seek shelter where they now keep me company. How
sweet. At least one has taken up nest by the heat of the
refrigerator compressor. There are at least two, because one
walked into a "Hav-a-heart" trap (catches without hurting) the
other day and has since been released at a local park. I caught a
second one that escaped before relocation. It then got smart and
tripped the trap without getting caught! Although not too smart:
this afternoon one ate a 2 inch row off the kitchen hand-soap.
Yetch! This tale comes up because, perhaps this same second one,
has been rummaging around in the couch for a half hour and is now
investigating the lunch dishes sitting by the couch. Though I can
hear it, every time I turn my head, the noise stops and I see
nothing! The psychodrama of mice and men!  :)  Stay tuned for
coming attractions. :)

Happy holidays,

Stefan

... Catch the Blue Wave!

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




------



Subject: Re: Getting SSDI
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 Michael Rooney to Ronald Erickson <=-

 RE>From: rerickso@cwis.unomaha.edu (Ronald Erickson)
 RE>Organization: University of Nebraska at Omaha

 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

 MR> One of the keys is having your own doctor on your side,
 MR> enthusiastically. I had two and I am sure their statements plus the
 <snip.
 MR> structured. But first things first. Your doctor has to be on your side
 MR> because their doctor definitely is not. Good luck and take care,

 It's interesting to read your experiences (frustrations) with
 SSDI. From what I've heard the system seems to have degenerated
 to: If you're dead and yell loudly, then you qualify. :^)
 Sounds cynical? Well yes <grin> a bit. I'm in the second round,
 having passed the first rejection. I was prepared for the
 initial rejection letter--or so I thought--most applications get
 rejected the first round. However, when the letter came, and I
 read that:
    "While it does appear that you might have some pain, and that
    this might occasionally bother you, we have determined that
    your pain is not markedly disabling, and that you should
    return to work in your previous profession . . ."
 then I really saw red. It seems comical now, but how dare they
 decide and casually brush aside how drastically my life had
 changed. Oh, but then I put it down to small ignorant minds
 trying to manage a difficult system, pulled my feet from their
 muck, and looked forward again. Fortunately I have an insurance
 company helping with the SSDI. And most gratefully, my doctor
 doesn't trivialize the pain in any way. And I am MOST
 TREMENDOUSLY GRATEFUL for that!!! :)

 Happy holidays,
 Stefan

... Catch the Blue Wave!

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




------



Subject: Re: Getting SSDI
From: Carl.Mork@p0.f367.n105.z1.fidonet.org (Carl Mork)
Organization: FidoNet node 1:105/367.0 - The Chess Board, Beaverton OR


[This is from the Chronic Pain Conference]

 -=> In a missive from Linda Cummings to Michael Rooney <=-

 > This was just this past spring. It is in the SS regs. As I read them
 > someone with the same condition and in the same condition as I am and was
 > would have been turned down on the merits alone if they were one year
 > younger. The cutoff age for me was 50.

 LC> That's strange.  Humm..maybe they've changed the rules in the last 4
 LC> years.  I was about 40 when I got my SS Disability (not SSI).

I'll just toss in my two bits worth.  I was 34 when I applied for
and received SSDI.  Of course I got it for psychological problems
and developmental disability, not physical problems.

... GOVERNMENT: The unwilling, led by the incompetent, paid for by US!

--
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Internet: Carl.Mork@p0.f367.n105.z1.fidonet.org




------



Subject: Re: neck problems
From: Carl.Mork@p0.f367.n105.z1.fidonet.org (Carl Mork)
Organization: FidoNet node 1:105/367.0 - The Chess Board, Beaverton OR


[This is from the Chronic Pain Conference]

 -=> In a missive from Bob Paddock to Carl Mork <=-

 BP> This is Bob's fiance writing this message. I was the one in the
 BP> accident.  My name is Karen Shettler.

 BP> Sorry to hear about your mother. What is a hypno-theraptist and what
 BP> do they do?

        A hypno therapists is one who uses hypnosis as a treatment method.
My mother found hers at her psychologist's office, but there may be other
places you'll find them.  Basically they work at helping mentally control
the pain.

... So to my old headmaster, and to anyone who cares...

--
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                                ******

                  End of Issue # 3090 of the Handicap Digest

                                ******
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