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Date:         Thu, 28 Jan 1993 12:46:37 EST
Reply-To:     Bill McGarry <wtm@sheldev.shel.isc-br.com>
From:         Bill McGarry <wtm@sheldev.shel.isc-br.com>
Subject:      Handicap Digest # 3121

                             THE HANDICAP DIGEST

                                 Issue # 3121

                         Thursday, January 28, 1993

Today's Topics:


                                ******


                              Re: side effects
                               Re: depression
                                 depression
                                 Drug Costs
                                RE: Welcome!
                                    argh
                                    argh
                                  Arthritis


                                ******


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Subject: Re: side effects
From: Wayne.Briggs@p0.f5109.n124.z1.fidonet.org (Wayne Briggs)
Organization: FidoNet node 1:124/5109.0 - National Amputee Co, Dallas TX


[This is from the Chronic Pain Conference]

The usual therapeutic dose of impramine starts at about 150 mg. NOT ALL
ANTI-DFEPRESSANTS ARE EQUALLY POTENT. Non-psychiatristic physician often
give sub-clinical doses to use this non-addicting medicvation to enhance
effectiveness of both perwcription & non-persc ription pain medications.
anti-depressants &^ anti-pain both effect the lymbic system. That is why
pain & depression are interrelated, in part.
Does your doctor know (a) what your pain levels are , (b) your sleep
patterns & are; and (c) any symptoms of depression ?
A newer anti-depressant called Zoloft has been very helpful to me at 100
mg breakfAst & 100 mg. lunch.
The real exerts on use of anti-depressants, and those who do the most
research, are psychiatrists. They now treat ordindary people, medical
patients who are experiencing paind and/or sleep disturbance, or
depression. Only a minority treat the chronically mentally ill who are
psychotic, as their main praxctice focus.
Good luck. My home phone is 915, 692-0052.

--
Uucp: ..!uunet!bunker!hcap!hnews!124!5109.0!Wayne.Briggs
Internet: Wayne.Briggs@p0.f5109.n124.z1.fidonet.org




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Subject: Re: depression
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 Linda Cummings <=-

 BP> This is Karen Shettler.

 BP> As far as my problem with depression it is sort of like this,  the
 BP> depression isn't too bad most of the time but sometimes, like all of a
 BP> sudden I get very depressed and think about bad things, mainly
 BP> suicide. I don't think the depression is caused by anything that
 BP> happened earlier that day.  The depression just seems to occur for no
 BP> reason at all.

 Oh dear, wait! Not for no reason, Karen. Excuse me for jumping in
 with both big feet--pain, and all the accompanying niggly nagging
 limits make you depressed. Happens to me. [grin] Mood swings seem to
 be part of the deal. Maybe even part of life, but when you're
 managing chronic pain, it's harder to hide that you're down. Thoughts
 of suicide swoop down and haunt me too, Karen. When they come, I talk
 to friends or rattle here in the echo with people who understand and
 encourage me toward higher, more smiling spirits. I'm glad you're
 here talking with us. :)

 BP> I hide all of these feelings from everybody in my family except Bob.

 Sounds like you and Bob are gems for one another. [smile] It's pretty
 clear that Bob thinks you're someone special. :)

 BP> Because sometimes, in the past I have forgot to hide these feelings
 BP> from them and that just starts an argument with them because they say
 BP> that NOTHINGS wrong with me.  Because they heard a doctor tell me that
 BP> nothing was wrong and that my pain was all mental, not physical.  My
 BP> family doesn't believe chronic pain exists.

 D@%n, that steams me. Upsets you too I expect? People who haven't
 experienced chronic pain and who have no compassionate imagination
 confer a delegitimate status on those of us who hurt that is REALLY
 AGGRAVATING! I'm sorry you get this from your family. Were you
 otherwise close before you injured your neck? It's emotionally
 traumatic to have people withdraw around pain issues.

 I've found, over time, Karen, that some of my friends and family can
 deal with realities of chronic pain while others cannot. While I will
 make overtures to see if any of these folks accept "education" I, and
 others in this echo, do just as you have found to do: stay away from
 people who abuse you for your pain, "fake it" when necessary, and
 rely on friends who care for you. If you need to rant and rave, or
 kvetch, or cry, there are people here who listen and care for you.

 BP> A family member came home from work the other day, (they works for a
 BP> Visiting Nurses Association), they had stayed with a guy today who had
 ...
 BP> tell when the pain is really gone. What I am trying to say here is
 BP> that the doctor is telling this guy that he isn't in pain.

 I'm mad and laughing all at once at this ironic replay of the most
 common scene from the tragi/comedy of chronic pain: "You're not in
 pain, you just think you're in pain." Or, "Mind and body are
 separate, if your body is in pain then you must be imagining it,
 because pain is really registered in the mind and therefore isn't
 real." [grin] Try that illogic on for size. Many doctors find it
 convenient to blame the patient when the illness does not subside;
 easier to blame the victim than realize that there just may be some
 limits to medical solutions. :) American medical schools breed for
 intelllectual prowess, not necessarily common sense. Ok ok, Stefan,
 so much for pedantically harranguing doctors. [smile] Some are
 comprehensively compassionate.

 BP> Just about all of the medical doctors I've been to have rejected me in
 BP> one way or another.  I've been to so many doctors that I can't even
 BP> remember all of them.

 Karen, do you have any doctors now who believe in you? Bob, you were
 asking about how to find doctors who could get their minds around
 chronic pain. I think I sent along some thoughts. Did they find
 their way to you? Where are you folks located? I have appointments
 with the UCSF pain clinic starting late this month. I though I'd bug
 them for how to get people in touch with doctors who understand pain.
 I may get nowhere, but it's sure worth digging.

 I've rambled on here more than I expected. Hope some of this helps.
 Please let me know. Sometimes when I re-read messages I've sent I
 sound crazy even to myself.

 Best wishes,

 Stefan

... The man who strikes first admits that his ideas have given out.

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




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Subject: depression
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]

BP>This is Karen Shettler.
BP>As far as my problem with depression it is sort of like this,  the
BP>depression isn't to bad most of the time but sometimes, like all of a
BP>sudden I get very depressed and think about bad things, mainly sucuide.
BP>I don't think the depression is caused by anything that happened earlier
BP>that day.  The depression just seems to occur for no reason at all.
BP>When I do feel depressed like that I would never physically hurt another
BP>person but I really do feel like killing myself.  Sometimes I can go
BP>for a month or two before I get into this kind of depression and
BP>sometimes a may get it just a few days apart.  I hide all of these
BP>feelings from everybody in my family except Bob.  Because sometimes, in
BP>the past I have forgot to hide these feelings from them and that just
BP>starts an argument with them because they say that NOTHINGS wrong with

Depression can have many causes but for those with chronic pain there is
an obvious first choice. I understand you hiding your feeling from all but
Bob since he understands and you don't feel you will be criticized for the
way you feel. If the depression is a mental problem (didn't mean it to
sound like it did<G>) you can work your way out of it. And your family can
help without even knowing it! The key for me was having someone who knew
the situation and cared, in your case Bob. You have to do the work though.
Make sure you don't withdraw from people. Easy as pie to do. I would just
sit in my chair and be oblivious as to what was going on around me. My
friend would not let it happen! He called me, sometimes 2 or 3 times a
day. He made me call him everyday and when I didn't he called me and
we just talked. He made me talk to people, to get outside of myself, get
involved with my kids again. Get involved with anything that made me do
anything but have the time to just sit around and think my way back into
depression. I would go from feeling normal to great highs to tremendous
lows. When I became aware that I could control how I felt, it just
became a matter of doing it. It took me about a year until the great bouts
had passed completely but each period of depression became shorter and not
as deep as the last. Use your relatives to talk to, not about how you feel
but about cooking or sports or the news (forget that, to depressing<G>)
or anything else you are comfortable with. Use Bob as the person to make
sure you are not crawling into that hole and hiding. I know it worked for
me and it has worked for others I know. Be aware of what is happeneing and
then take steps to offset those feelings. After almost seven years I rerely
have any problems with it anymore but when I do feel it coming on I
immediately take action and do something, anything so it does not take hold.

BP>me.  Because they heard a doctor tell me that nothing was wrong and that
BP>my pain was all mental, not physical.  My family doesn't believe chronic
BP>pain exists.

I have had chronic pain for the past 35 years to varying degrees. A few
months ago my mother was talking to a friend of her's and the friend was
telling her how painful her arthritis was. This was the FIRST time she
really understood how I hurt. For some reason she could understand how her
friend could hurt but not me. Maybe it has something to do with those
closest to us not wanting to believe we are hurting because they don't
want us to hurt. Just a thought.

As a change of pace. Spy Magazine asked the incoming freshmen congressmen
what shoul be done about problems in Fredonia. Answers ranged from military
intervention to boycotts etc. Fredonia is an imaginary country from a
Marx Brothers movie. Now don't you feel like we have the best and brightest
running this country?<G> Mike...
 ~ SLMR 2.1a ~ Then again, I could be completely wrong...     Nahhh!

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




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Subject: Drug Costs
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]

Just got a printout of my drug purchases for 1992 and makes interesting
reading (for me anyway<G>). Total price, $1618.63, my cost $491. Ranged
from a prescription for 5 pills that cost $4.14 that I paid $7 for to
100 pills for $93.25 that I paid $7 for. That one I used about 5 days
and then threw it out since it didn't work. All this is down from last year
when the doctor was searching for a way to slow down the inflammation.
For a period of 4-5 months (don't have the paperwork anymore) I was paying
$42 per month for drugs costing about $350. Seems like I got a better
deal last year.<g> Anyway the point is, the average cost without
insurance was $134.89 per month and $40.92 with insurance. For '91 the
average cost per month was somewhere around $300 and my cost about $41.
We may complain about insurance but without it I'd be in big trouble. Two
MRI's in '91 cost around $2800 total and I paid 10% of that. Then of
course there are the monthly doctor visits and lab tests which average
$140 per and I pay about $18 for. There was a lot more but you get the idea.
Without insurance I would be up a tree full of termites. Without SSDI
the termites would have the tree down.

Insurance coverage for the family cost us, through my wife's job, $296.41
for the year of 1992. Our out of pocket expenses were $2621.51, about
$1800 of this from 1991 paid in 1992. The insurance cost is going up this
year to about $36 per month from $24 but we are moving to an HMO and our
out of pocket expenses will be much much smaller. The max for a prescription
is $5, and no deductibles for hospitals, or surgery and doctor visits are
$10 max including any tests. Fortunately both my doctors are members of the
HMO so I don't have to start over. I am also eligible for Medicare as of
12/28/92 so I am well covered.

What's the point of all this? No, it's not national healthcare, but there
has to be, must be some way to make this care available to those who do
not have insurance. Without it I would be a basket case. I don't have an
answer but I do have the question. What do we do. Obviously the answer
is not with our congress which wants to take care of the problems in
Fredonia.<G> I don't trust them to come up with a solution to the problem.
They have trouble coming up with the correct problem. I have been in the
position of no being able to afford doctors in the past and I volunteered
for experimental drug treatments to get care. Sometimes you have to be
creative. That is what this problem needs, some real creativity. Mike...
 ~ SLMR 2.1a ~ Midas - god of mufflers.

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




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Subject: RE: Welcome!
From: Elizabethann.Hawhee@f119.n283.z1.fidonet.org (Elizabethann Hawhee)
Organization: FidoNet node 1:283/119 - The Mouse College, Cedar Rapids IA


[This is from the Chronic Pain Conference]

In a message to Elizabethann Hawhee written on Wednesday, January 13,
1993 at 14:41:31, Linda Cummings writes:

LC > steel...it's like *nobody* is supposed to be allergic to that. I
LC > bet I know something else you may be allergic to...tape from
LC > surgical dressings?  I am...big
LC > time!  When I had those three incisions, I started itching
LC > something terrible!  When they finally removed the bandages, my
LC > back (underneath the tape) had broken
LC > out big time!  My doctor said to be sure to tell them from now on
LC > that they need to use non-allergic tape on me.  It doesn't hold
LC > on as well, but it is better on the skin.

How didi you know? I have been allergic to most tapes sence the age of
nine! I have become so allergic to so many things that I carry a list attached
to my drivers licence. Things like latex rubb, tape, soap, and must not forgie
t the surgical stainless steel! Would you believe the last time I had blood
drawn I had an allergic reaction from the needle that lasted almost a week-
that was a first. Now I guess Iust avoid all surgeries if at all possible. I
honestly don't know about my stupid body: it reacts badly to so many things.
If I could just take Motrin I would be so much more comfortable. I finally
gave the Zoloft a t, no good. Did not make me sleepy but into a zombie once
more. (Big sigh It was the last medication the pain clinic could think of
trying on me. I am not too impressed with this pain clinic though. The only
test run was that EMG (which I told them would be normal). Everything else was
examination only. They refused to give me any pain pills and when I informed
them that the exercises they gave me to do totally incapacitated me they said
I have to do them. They gave me one for my upper back that made my hands
useless: it was all I could do to feed myself but they insist I need to do
them. I did the lower back exercises for six weeks but all they did was
increase my discomfort tenfold. Could not get them to understand that I HAVE
to be able to function at at least the level I am because my husband cannot
drive and I must be able to take him places

Sorry about the moaning and groaning but the last two weeks have been so bad:
well, I'm sure you understand. Everytime I slept last night all I did was
dream about "the pain".
Lots of line noise again today, hope this message is not too garbled. And a
big thanks for listening.

Take care,
Elizabeth

--
Uucp: ..!uunet!bunker!hcap!hnews!283!119!Elizabethann.Hawhee
Internet: Elizabethann.Hawhee@f119.n283.z1.fidonet.org




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Subject: argh
From: Kelli.Sheets@f515.n104.z1.fidonet.org (Kelli Sheets)
Organization: FidoNet node 1:104/515 - The Gates of Deliri, Aurora Co


[This is from the Chronic Pain Conference]

SW> AAARRGGHHHHHH! I get the picture! [grin] Not something to
SW>pleasantly
SW> anticipate. I travel poorly by car also. Always lean the seat

I have cancelled the trip. The last few days have been hell and I can't
abide by it much longer, let alone make that drive. We'll be getting married
this week at city hall and then hopefully doing something together later on
after I get something done to this back of mine...sigh!

--
Uucp: ..!uunet!bunker!hcap!hnews!104!515!Kelli.Sheets
Internet: Kelli.Sheets@f515.n104.z1.fidonet.org




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Subject: argh
From: Kelli.Sheets@f515.n104.z1.fidonet.org (Kelli Sheets)
Organization: FidoNet node 1:104/515 - The Gates of Deliri, Aurora Co


[This is from the Chronic Pain Conference]

LC>Probably.  You have to know your limits, Kelli.  We all push
LC>ourselves sometimes (especially for the sake of loved ones).
LC>But, there comes a time when you have to do what's best for you.
LC>You may have to make this trip, and die in the process [grin],
LC>but afterwards, YOU do what's best for YOU.

I have cancelled the trip after the last few days of being in terrible pain.
We'll just hop on down to city hall and get married then hopefully I can get
my back taken care of and maybe go somewhere nice after everything settles
down. I feel badly about this, but as I explained to Barry, if I go ahead
with the trip, I will not be in any shape to enjoy him, nor anything else
for no telling how long. He agreed.

LC>Have you talked to your fiance about your pain?  Is he
LC>understanding? If so, then sit down and talk with him about
LC>what's going to happen after the trip...that you've got to slow
LC>down...that you can't push yourself as much anymore...that
LC>you'll need help from time to time, etc. In fact, print this
LC>message out for him and hand it to him to read.

He says he understands, but it's doubtful. He gets pretty irritated when he
wants to rollerblade or ski and I can't enjoy it with him. I tried to tell
him that this is the way things will be for a long time and he needs to
think long and hard about that. I also explained that there will be times
when I'll really need some extra help and affection. He seemed to be a bit
frightened by it all, actually. I'm hoping we can muddle thru all
this....it's hard...

LC>I would push myself so much and regret it later.  I had to learn
LC>what my priorities were, and only push myself when I *really*
LC>had to (like you and the trip).  But, then I had to realize that
LC>if I pushed myself today, I couldn't push myself for the rest of
LC>the week.  I make plans around this (and the weather).

Exactly. I called the HMO doc today and she said she'd schedule the MRI as
quickly as possible. She isn't big on meds she says, but she talked with me
for 25 minutes on the phone and that counted in her favor right there. She
listened to everything I said, and made suggestions. She didn't brush me
off, or sound too busy. I appreciated that more than she can ever know.

LC>Mother-in-laws can be insensitive.  What did he say?

He just ignored her. Easy for him to do, not that easy for me...she also
told him on the way to the train station last night that she just *knew* I
was using him for his money. I was hurt, but am trying to rise above it and
not allow her to have any power over me. All she did, in my opinion was
extract herself from a relationship with me that could have been very
rewarding to all of us. Sad...

LC> > She also insinuated that maybe this pain is *all in my head*

LC>ROFLMAO!!!  A hobby?  Yea, that's right...get a hobby so you
LC>won't hurt all of the time.  We just had a discussion in the
LC>Crafting echo about pain and crafts.  We decided that crafting
LC>can take away some of the pain, but it's due to concentration on
LC>the craft rather than doing something for the pain...you know, a
LC>diversion.  Hummm...a craft, huh? Try it.  I know sometimes it
LC>works for me.  It's almost like a self-hypnosis when I'm working
LC>on my crafts.  But, you have to be careful not to sit in one
LC>position too long (as I've discovered).

I enjoy reading. I also love working with wood. I'd love to try painting or
such, but alas, I'm not inclined that way. I knit, and I like puzzles. As
you said, sitting in one position is rough for me, and I try to be very
consciece of that.

LC>Kelli, don't let *anyone* make you feel guilty for something you
LC>have no control over!  Okay?  My parents live next door to me.
LC>When they moved in, they talked about how wonderful it was going
LC>to be to see each other everyday.  Well, they soon learned that
LC>if it's raining...I don't walk over there to see them.  I'm
LC>usually curled up on the couch in pain.  At first there were
LC>some hard feelings, but now my mother is going through some pain
LC>herself and understands why I don't see them *everyday*!

Do you have any idea what the recovery rate is if this is just a herniated
disk and they can remove it? Any idea on how long the hospital stay might
be? The most hurtful period? The bedrest required afterwards? I'm also
experiencing some burning type pain right at L3. Thats as close as I can
describe it for you. i still, of course have that horrid pain in my legs and
hips, and am now getting this bad burning, searing type of pain right at L3.
Is this disk related do you think? Does it sound like anything you've ever
heard of? This is a new one for me, as I'm used to the usual bad pain in my
low back, and the nerves going beserk, but not this searing type of pain.
Granted, I coudn't lie down at all when the Woman From Hell was visiting,
and I stood alot, cooking, cleaning and slaving. (Gryn) I dunno if I've
complicated things or not, and cannot return to the doctors until the
actuall insurance goes into effect. That should be within the next two
weeks.

Also, if you have any idea, does this pain stop for good if they remove the
disk and will I have to alter my life afterwards? Will I forever have to
watch what I carry, how long I stand, sit, etc, or does this fix everything?
Sorry to put some much at you in so short of a time, but I'm very nervous
and a bit scared as well. The last surgery in 1982 was horrible and the
pain was something I never expected of that amount....

Thank you dear lady!

--
Uucp: ..!uunet!bunker!hcap!hnews!104!515!Kelli.Sheets
Internet: Kelli.Sheets@f515.n104.z1.fidonet.org




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Subject: Arthritis
From: Don.Mcgregor@f595.n106.z1.fidonet.org (Don Mcgregor)
Organization: FidoNet node 1:106/595 - Medico BBS, Houston TX


[This is from the Chronic Pain Conference]

Do any of you people with pain have rheumatoid arthritis??  I am on
methotrexate and prednisone, but my pain is still bad and it keeps
me awake at night.  I have been reluctant to take sleeping pills
because of the other drugs I take....any suggestions??

--
Uucp: ..!uunet!bunker!hcap!hnews!106!595!Don.Mcgregor
Internet: Don.Mcgregor@f595.n106.z1.fidonet.org




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                  End of Issue # 3121 of the Handicap Digest

                                ******
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