(no subject)

[Guest guest]

Gonna miss ya Jeff...hope you can somehow get a puter of your very own.

God bless,

Diane

Jeff wrote:

>

>

> Hi everyone I just wanted to take soem time totell everyone THANKS I have

> enjoyed your posts and have printed out most.

>

> I will be unfortunately with out a computer as of Sun.

> This one has to return to " Active Duty " at the VA Offices.

>

> Jeff

> jkeith@...

> & The Hounds of Hooterville

>

> ------------------------------------------------------------------------

> What do lizards and rock music have in common?

> http://www.onelist.com

> They both have communities at ONElist. Find yours today!

> ------------------------------------------------------------------------

> Know someone who could profit from our list? Send our direct sign-up URL:

http://www.onelist.com/subscribe.cgi/chronic_pain, or write us at: chronic_pain

@onelist.com

[Guest guest]

Kay, I am in same situation. Recollecting all the e-mail addresses I had

will take some time. I didn't make a print out from old computer, and of

course, now, I can't get it to even turn on.

Ray

(no subject)

>

>

> Hi, all. Today my ISP had me uninstall IE5 and reinstall IE4, so I could

> set up separate accounts for us; no separate accounts, but I've lost all

> email since May 14--no addys, nothing. If I haven't answered someone, I'm

> sorry--I'm having to start from scratch again. The addys aren't even in

my

> addy book--just don't understand--except that I'm really p o'd!!!

>

>

> ------------------------------------------------------------------------

> Having difficulty getting " in synch " with list members?

> http://www.onelist.com

> Try ONElist's Shared Calendar to organize events, meetings and more!

> ------------------------------------------------------------------------

> Know someone who could profit from our list? Send our direct sign-up URL:

http://www.onelist.com/subscribe.cgi/chronic_pain, or write us at:

chronic_pain @onelist.com

>

[Guest guest]

Ray : I just wanted to take some time and post to the group as I have been

very busy these past few days.

I have finally recieved the eval. form from the Pain Clinic, " WHAT A JOKE "

Everyone was more concerned over my Mt Dew consumption than in trying to

find out what is causing the underlying muscular pain, and spasms.

I Could write a BOOK on what I had to go through to obtain a copy of this

eval.

I did press my Primary MD and have seen a Rheumatologist at the University

of Chicago, he is concerned that many of my MD's are simply passing the

patient, frustrated, because they do not know what is causing the pain but

also not professional enough to at least assist me in locating the

underlying cause.

He did promise his devout attention to finding the cause.

His impressions were that the arthritis is not too bad yet, but he is VERY

concerned over the Nerve Conduction tests, and the possible underlying

neurological disease.

He personally phoned me last Thursday, I was to say the least shocked to

answer the phone and hear him ask me how things were going!!!!

I after hearing what he had to say I did ask him what type of Neurological

disease we could be talking about, his reply was mostly sole sort of

Demylinating neuropathy, of posible the Muscular Dystrophy types, even so

much as possible ALS. So we wait till his dictated report arrives at my

primary's then we seek to follow Dr Ellman's reccomendation of returning to

one of the nations best neurologists specializing in multi disease

processes.

Jeff

& The Hounds of Hoopeston

jkeith@...

Moderator note: Kieth, I have known people with similar results where there is

some degenerative process, but it is not necessarily continuous or recurrent.

There are some experimental treatments, at least one of which I know has worked.

But don't start celebrating yet, it is radical & very tehnical.

Hang in there. At least you have a start.-- Ken

[Guest guest]

Jeff,

Good to hear you are making progress with the new doctor to find out what

disease(s) you are dealing with. The round-robin treatment most of us get

from our doctors is most definitely because they haven't got a clue as to

where to begin or what to do. I thought they taught them that in medical

school. But as I've noted before my MD wife tells me she had exactly 60

minutes of how to deal with patient pain and chronic pain. Yep, that was

all!

My wife has tried to help me " understand " other doctors, but has come up

blank over what some have said or done. Even my pharmacist questions the

way my last Internist prescribed my medications so that in effect I pay

four-five times as much as I would if he wrote the prescriptions for one

month instead of one week. Co-pay is the same for either way.

I suspect since the local pain clinic doctor keeps putting off my

appointment (he volunteered to see me when he was the anesthesiologist for a

surgery my wife did) because of what my former internist has told him.

Rheumatology report (joke) was also sent to him. The Rheumy stated I had

Fibromyalgia and had had RS previously. She also stated that Fibro symptoms

would not respond to steroid injections. So, how come I'm feeling better

after having a steroid injection last week. And why can't she explain the

major problems I have with the Fibro diagnosis? Things like Achilles

Tendon, swollen sore toes and fingers, swollen knees, etc., etc., etc.!

As someone posted yesterday treatment for those of us with rarer disorders

is very much an " educated Guess. " The problem is finding a doctor with

enough experience and compassion that he/she will listen to the patient

before making a best of kind " educated guess. "

I've had some doctors that at the moment, if it weren't for my wife's

practice, I'd move back to where they have their offices to get the kind of

care I believe I'm due. I have always had to " trail-after " my wife and that

has meant frequent moves until six years ago when whe bought into this

practice. Now I'm in the lovely position of not have any Rheumys within

less than two and a half hours to five and half hours. And then you just

get " hit-or-miss " treatment since you don't have an opportunity to really

check someone out before you drive that far.

Having moved here from Chicago, I sort of envy you going to a doc in

Chicago. My old hometown, the place I grew up. Just don't miss the

violence and the traffic. But, ahh, I do love that city!

Best of luck!

Ray in Virginia

[Guest guest]

Ray,

Seems like doctors & others are committed to the belief that there

is some hidden logical reason for just about everything. Granted, in

medicine this is often true, but we lose sight of the possibility that

there are things we just don't know enough about to explain. We spend so

much time hunting for reasons, when what we need most is help. The

anesthesiologist is trained in pain control. Try to stay with it & I hope

he can treat you without having to have/find all the answers first.

Ken

At 08:22 AM 6/23/99 -0400, you wrote:

>So, how come I'm feeling better

>after having a steroid injection last week. And why can't she explain the

>major problems I have with the Fibro diagnosis?

[Guest guest]

Ray,

Seems like doctors & others are committed to the belief that there

is some hidden logical reason for just about everything. Granted, in

medicine this is often true, but we lose sight of the possibility that

there are things we just don't know enough about to explain. We spend so

much time hunting for reasons, when what we need most is help. The

anesthesiologist is trained in pain control. Try to stay with it & I hope

he can treat you without having to have/find all the answers first.

Ken

At 08:22 AM 6/23/99 -0400, you wrote:

>So, how come I'm feeling better

>after having a steroid injection last week. And why can't she explain the

>major problems I have with the Fibro diagnosis?

[Guest guest]

Wow, while I've been off-line looks like there's been an off-line epidemic.

Ken

At 03:06 PM 6/22/99 -0400, you wrote:

>

>

>Kay, I am in same situation. Recollecting all the e-mail addresses I had

>will take some time. I didn't make a print out from old computer, and of

>course, now, I can't get it to even turn on.

>Ray

> (no subject)

>

>

> >

> >

> > Hi, all. Today my ISP had me uninstall IE5 and reinstall IE4, so I could

> > set up separate accounts for us; no separate accounts, but I've lost all

> > email since May 14--no addys, nothing. If I haven't answered someone, I'm

> > sorry--I'm having to start from scratch again. The addys aren't even in

>my

> > addy book--just don't understand--except that I'm really p o'd!!!

> >

> >

> > ------------------------------------------------------------------------

> > Having difficulty getting " in synch " with list members?

> > http://www.onelist.com

> > Try ONElist's Shared Calendar to organize events, meetings and more!

> > ------------------------------------------------------------------------

> > Know someone who could profit from our list? Send our direct sign-up URL:

>http://www.onelist.com/subscribe.cgi/chronic_pain, or write us at:

>chronic_pain @onelist.com

> >

>

>

>---------------------------

[Guest guest]

Wow, while I've been off-line looks like there's been an off-line epidemic.

Ken

At 03:06 PM 6/22/99 -0400, you wrote:

>

>

>Kay, I am in same situation. Recollecting all the e-mail addresses I had

>will take some time. I didn't make a print out from old computer, and of

>course, now, I can't get it to even turn on.

>Ray

> (no subject)

>

>

> >

> >

> > Hi, all. Today my ISP had me uninstall IE5 and reinstall IE4, so I could

> > set up separate accounts for us; no separate accounts, but I've lost all

> > email since May 14--no addys, nothing. If I haven't answered someone, I'm

> > sorry--I'm having to start from scratch again. The addys aren't even in

>my

> > addy book--just don't understand--except that I'm really p o'd!!!

> >

> >

> > ------------------------------------------------------------------------

> > Having difficulty getting " in synch " with list members?

> > http://www.onelist.com

> > Try ONElist's Shared Calendar to organize events, meetings and more!

> > ------------------------------------------------------------------------

> > Know someone who could profit from our list? Send our direct sign-up URL:

>http://www.onelist.com/subscribe.cgi/chronic_pain, or write us at:

>chronic_pain @onelist.com

> >

>

>

>---------------------------

[Guest guest]

Is anyone getting my mail??? =( =( =(

Vicki

Moderator's note: Well Vicki, it has all reached the server so far as I know.

Have had problems with the server sending me my own mail from the list

[Guest guest]

At 02:28 PM 10/13/99 -0700,

errors-13341-7154-kturbin=access1.netonelist wisely said:

>Tuesday I went to work and was too sort Light Weight cans. Take =

>cans off of one pallet (11 layers high, 1lb cans) and weigh them on a =

>scale than restack them to another pallet, all by hand, no machinery. Up =

>and down bending, up and down, on and on, I stayed 6 1/2 hrs, than I =

>couldn't move up and down Again, I was Done.=20 Today I'm in so much

>pain, my lower back just don't want to let me =

Sounds like you, or you & your bosses, are bent on killing you. If

you keep on going like this you will continue to hurt yourself, be unable

to report, and round and round until you are fired. It ain't the weight

here, it's the bending. Why don't you do something less stressful on lunch

hour? like going to a gym & lifting 200 lb. weights.

Somewhere, sometime, the words " I cannot do that " have to enter

your vocabulary!

Ken

----------

Turbin | Mailto:kturbin@... | webmaster@...

Net Biz Development | *Page me: http://www.mirabilis.com/17198172

Tel. (702) 312- 6888 | Fax | GetICQ http://www.icq.com/

[Guest guest]

Hi....I know what your going through in a way. Me myself have suffering with

nerve damage pain in my lower back and was put on one pain killer after

another and also muscle relaxers until I was sent to the pain center here at

the hospital. I have insurance though and you don't have insurance which

makes it hard for you. Do you have a family doctor you can go through

him/her? They might be able to direct you in the right doctor for your pain

and probably get you in cheap. Every state is different. I live in NH so its

different here. I just found out that I have bad tendenitis in my upper left

shoulder and I'm on Robaxen twice daily and going for physical therapy.

Thank goodness for medicare insurance. I do hope you can find the right

doctor and for a cheap price. You shouldn't have to live in pain everyday.

Well you keep in touch with the list and tell us how your doing. Goodluck.

Tammy

(no subject)

>

>Hi,

> Is there anyone who can help? I feel so alone in all this. I have been

>in constant pain since '97. The doctors have said there is no more they

can

>do. I have a slipped disc in the neck, rotator cuff pinch and Firbro. The

>pain pills I get average out to about one allowed every 3 days. Thats

about

>4hours of relief every 3 days. Max. Sometimes I cant even get those

pills.

>Today I am hurting so bad my whole chest just aches. I have a life I want

>to live. Things I want to do and I dont want to spend them laying on the

>couch.

> I just wish there were a doctor that would understand what its like to

>live in pain and be willing to help me. But since they dont have the

>pain...they dont care.

> Does anyone have any ideas? I have tried everything from PT to

>accupunture, and nothing has worked. I just need to find a Dr. who will

>understand the situation. Anyone??? Diane

>

>------------------------------------------------------------------------

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>

>

>

[Guest guest]

There is a Dr. Skaredoff in Oakbrook

Terrace (near chicago). Dr. Ruderman from

Rush Presbyterial St. Lukes Also the Chicago

Rehab Institute.

__________________________________________________

[Guest guest]

Is there any one that may know of a doctor, preferrable a general

practictioner in the Denver CO area who deals with Fibro as well? I looked

up some specialist and found some, but without insurance they run near a

thousand just for the first visit.

Anyone know????? thanks Diane

[Guest guest]

Is there any one that may know of a doctor, preferrable a general

practictioner in the Denver CO area who deals with Fibro as well? I looked

up some specialist and found some, but without insurance they run near a

thousand just for the first visit.

Anyone know????? thanks Diane

[Guest guest]

>My dad did not appear to really know who I was lately but yesterday

>when I went in he refused his lunch and then when mum came home to

>take him to the toilet he told her about me being in and making him

>this " stuff " and it was horrible and how I'd kept on and on at

>him.

Hi Sbogue my husband has LBD but is still in the early stages. When I

worked as a CNA in a nh I worked on the dementia unit. Now I work

with a woman who has PD dementia that has been getting worse over the

last few months. She has 5 differant people who care for her plus her

husband and she has a problem with a couple of them. Although these

women have been working with her for some time and are doing a good

job she says they are too bossy and they don't let her do what she

wants to do. Sometimes she will refuse to let them get her ready for

bed or will not eat because they have upset her. It is not their

fault as it is not your fault. You are not doing anything wrong it is

just that his mind is not working right and it really has nothing to

do with you. Just continue to be there to let him know he is loved,

and to be there for your mom to let her know she has your support.

There really is no way of knowing for sure what is going on in your

fathers mind but I think that maybe this might be his way of

protesting that his wife is not there all of the time. That isn't to

say that she needs to be, It sounds like you have worked out a good

schdule and other then the eating it is working. You might try

sitting and talking to him before lunch, not about eating, but about

any subject he is interested in, a trip, or when he was a boy. If he

still refuses lunch then go in and check on him and make his lunch

but let your mother give it too him when she comes home to take him

to the toilet.

I know what works for me when I work with my client or my husband

when he is having an off day is to keep my patience (sometimes very

hard to do) I don't try to reason with them but I just let them

ramble and talk to them about anything and everything. I hold their

hands when they are upset and laugh with them when they are in a good

place.

The hardest part for you at this point is that your dad is refusing

your help when you want so bad to help in his care. Since your dad

has had this disease for some time you are familiar with the

fluctuation. Hopefully what he is going through now will change and

soon. I hope some of this helps, mainly you have to find what works

for you and your dad, if one approach doesn't work try another. Barb

[Guest guest]

Siobhan

May I ask how old your dad is? I can truly relate to your dad not

eating. There were many meals my dad refused, then the last 9 days of

his life he had a couple sips of a protein drink 2 different days...that

was all. This is such a painful disease to watch and live. I

appreciate your approach of not forcing your dad to eat. It is

comforting to know you are treating him with respect and giving him a

choice in life.

You are added to my prayers!!

Sandie

Des Moines, IA

[Guest guest]

>I know I rambled but I was quite upset thinking that dad was going

>to somehow hold this against me (even though I tell myself its not

>personal).

Siobhan sounds like things are a little better. Probably the hardest

part of careing for a person with a dementing disease is not to blame

ourselves when our LO's refuse our help or lash out at us. Our

response is, what did I do wrong. This site was mentioned on the

careingspouses site and I will pass it along here...it is an

alzheimers site but so many of the subjects relate to LBD. I found

it a delightful and imformative site.

http://www.bigtreemurphy.com/index.html

Take care and God Bless, Barb

[Guest guest]

,

I think this might be called " turn about " if we were in Australia.

The order or progress or system by which I always depended on my

Universe to provide me with clues as to how to manage my life, flew out

the window 4 years ago when Mom came to live with me. And I was so

certain for a while that order, or whatever, would happen " soon. " It

never did happen and with this disease, I spent 4 years living day by

day. And day by day was all I had. I remember after Mom died, with in

hours, getting a piece of paper and pencil out and multiplying 365 x

4! I needed to know how many days there actually were in this time I

spent in so many way with my mother.

I tried it with 3 too, because those were the times she spent in my

house and with me almost min. by min.

And all that was always with the knowledge that " she was dying. " I

would watch the babies, and when you put energy into them, they grew and

thrived.

When I put energy into myself, I grew and thrived. And here is this

other strange process, that no matter what energy goes in, it

deteriorates. I had such an up-side-down reaction to that and I never

reconciled it internally. On top of that, my mom, when I went home to

get her 4 years ago, said " you must help me, I can't live with this. "

So now I was fighting her and Universe and eventually the nh.

I mostly waiting for the day when she wouldn't really know any more.

And Kristi that day never came. Mom always knew.

She went into the hospital on a Wed or Thur and the first time she

really woke up there, she started to try and talk to me. She wanted me

to know something and I sat and watch her painful attempts and tried to

translate for her. But with the morphine, she couldn't do words. And

she did that on more than one occasion. And I told her whatever her

story was, I would have to learn later what she wanted me to know. So I

told her stories instead. And she could rest.

, it is that total unorganized way of life that makes this a day

by day process. And it is so out of our control with whatever sickness

they have today,.and it is all to the same end. ........

You and I sitting here and trying to understand what is happening to

each of us in our own place in the world.

Donna

[Guest guest]

You said exactly what so many feel with this disease. We have/had lost

our loved ones long before the breath left their lungs. It is the

strangest feeling for me to mourn over someone I was still able to look

in the eyes. Then when dad passed away, it felt like he was taken away

from me again. Please know you are not alone in this. Maybe I will

have some answers to help you through this journey.

Hugs and prayers to ya!!

Sandie

[Guest guest]

You said exactly what so many feel with this disease. We have/had lost

our loved ones long before the breath left their lungs. It is the

strangest feeling for me to mourn over someone I was still able to look

in the eyes. Then when dad passed away, it felt like he was taken away

from me again. Please know you are not alone in this. Maybe I will

have some answers to help you through this journey.

Hugs and prayers to ya!!

Sandie

[Guest guest]

in FL

Wow, this is a big turn from how your dad was when you visited. This

disease is so unpredictable. Please keep us posted and I will keep you

and your dad in my prayers.

Sandie - in Iowa with your parents...

[Guest guest]

The water cure is what is causing me problems now. I end up needing to drink

2 to 3 more glasses of water after 8PM. If I drink the water it stays in my

stomach all night as my lower sphincter valve stays shut. That is why I asked

if there was a frequency to correct the lower sphincter valve. DR Mirkin

says this is a condition that affects diabetics. I am not a diabetic but

apparently am close. I had high triglycerides like 850 before going on a low

carb

diet and loosing 30 pounds. Triglycerides high + belly fat are signs of

becoming a diabetic.

Brickey

[Guest guest]

At 01:28 AM 5/27/2003 -0400, you wrote:

>The water cure is what is causing me problems now. I end up needing to drink

>2 to 3 more glasses of water after 8PM. If I drink the water it stays in my

>stomach all night as my lower sphincter valve stays shut. That is why I

>asked

>if there was a frequency to correct the lower sphincter valve.

Does using magnesium not cause it to open?

turf

[Guest guest]

In a message dated 5/27/2003 2:20:09 PM Pacific Daylight Time,

turf@... writes:

> Does using magnesium not cause it to open?

>

>

I take around 400 to 500 mg of magnesium in supplements each day. I was

taking magnesium because of kidney stones.

Brickey

[Guest guest]

The photon sound beam emits light photons and the small pak emits radio

frequencies not sound harmonics. The one patient was my ortho assistant. Has

had no problems in almost two years now

(no subject)

So, the photon sound beam is an instrument that generates multiple harmonic

audio tones.......this is good. If you know of this persons recovery, then

please give us details so we may use this knowledge for the good of everyone.

Tom

Arcadia