Re: Help please... Interesting day

[Guest guest]

,

Why don't you start by telling us what medicines they have tried (for what

symptoms) and if they worked at all. That way we have some idea of where you

are.

At this point if you are still walking, you should be NOT feel you have

" disabilities " as much as limitations. You MUST learn to accept " limitations "

and work to find ways around them. Do NOT let yourself get overtired. Take

naps or rests during the day - plan them in fact. You probably need a siesta

every day. If you feel the need for a wheelchair, accept it as it can help you

keep going.

Your family can help you pace yourself. Accept that they are just helping you

out because they love you. Charlotte lived almost 7 years after accepting a w/c

and used the computer (at least the mouse) for six of those years. Exercise to

keep what movement you have.

Take care, Bill Werre

================================================

>

>

> Date: 2002/07/11 Thu AM 04:31:39 CDT

> To: shydrager

> Subject: Help please... " Interesting " day

>

> Hi all.

>

> I need help. (So what's new?

>

> I sit here, head bobbing, and fatigued.

>

> My usual humor is not present, and was only there with effort after

> lunch.

>

> Something happened today, and now I am more concerned.

>

> We are still on vacation - in Chicago.

>

> We rode the train in from Naperville. That was neat! All enjoyed it

> (especially my wife, who enjoyed the break from driving

>

> First stop (by the time we got there) was eating lunch. We went up 7

> flights of escalators, and then found out we were 5 flights too high

> (typical for us

>

> So, we took the elevator down.

>

> As I awakened to vomit, and was still doing so in the train station,

> I opted out of lunch. I rummaged through a food related store, and

> did exit with a 40 cent biscuit (which I'm convinced was the best

> bargain in the entire Water Tower Mall

>

> I sat down, and checked in with my wife via walkie talkie. Due to my

> weight loss, I opted to remain in the wicker chair in the courtyard

> area, as opposed to the iron chair in the restaurant.

>

> Not long after signing off... I pulled out my notepad (to make a

> comment in it about my Mayo GI doc being wrong about not being able

> to vomit after a couple of hours - because I'd spent the morning

> throwing up food eaten the night before).

>

> Half an hour later, I still had not one single word on the pad.

>

> What I experienced was " interesting " to say the least.

>

> I've had problems with my eyes spazzing. They were in full swing.

> I've also had problems with poor visual-motor coordination. When I

> did finally begin writing - it was very slow, and even then, I found

> myself pausing uncontrollably.

> I've had problems before with a numbing sensation that seems to run

> my entire body - and has some pain associated with it - but this

> cause jerking as well.

> I've had head bobbing - and this was among my worst.

> What was really odd, was that I was thinking - perhaps slow - but I

> seemed to be thinking okay. I just couldn't get my body to

> cooperate. Whether it was something someone said that deserved a

> smile - or a comment... I

> My vision was most often double. I could not bring it in - and

> usually I can.

> I remember sitting there - presenting in ways that were admittedly

> embarassing, but really... I didn't care. I just didn't want to

> move.

>

> My family went to FAO Schweetz (the candy store) while my nephew

> babysat me (sorry - but that's how it felt - and I have no idea what

> he was thinking as he watched me - but... I must not have been too

> entertaining - as he eventually fell asleep

>

> When my family did return, my eldest daughter suggested they get a

> wheelchair for me. My wife appeared to scold her for this (I was

> still not " with it " ). The thing is... I WAS thinking that I would

> like one.

>

> This is not me. I am an independent man. I " do " for myself and my

> family. I " do " more than I should, but I " do " anyway.

>

> Anyway, I don't know what I want from you.

>

> I really don't.

>

> I'm confused.

>

> I'd say I'm tired, and I am - but not all that much. No more so than

> normal.

>

> When we got home, I sat on the couch, and went back to a comatose

> state. I recall someone saying that they thought it best I stay home

> tonight - and the next thing I know is they're waking me up from the

> floor (hours later) telling me that I need to go to bed.

>

> I sit here, and my head is bobbing, eyes are seeing double, and hand

> coordination is impaired.

>

> I think I'm starting to get concerned.

>

> A doc at Mayo told me I'd been lying to myself. Well, perhaps he's

> right, but what good does it do to lick wounds?

>

> Anyway, I am beginning to see where even my clients (I work with the

> mentally retarded) might not want me working with them. Most of the

> time I can cover things up - with humor if nothing else - but I fear

> it may be reaching the point where this is no longer possible.

>

> I am not ready to be disabled. Perhaps that is it. But, on the

> other hand, I'm not relishing the end of this trip either. I'm

> working some (very little) while gone, but I really don't know what's

> going to happen when I go to an interdisciplinary team meeting and

> display behavior similar to what I did today.

>

> Guess I'll cross that bridge when I get there.

>

> I think, in my own denialist sort of way... I have been saying to

> myself that this would not come. I have refused to believe that it

> is real. I've refused to believe that

>

> Someone said that Sinemet has helped. Perhaps I'll give that a try.

> I really had wanted to wait on that until it was a daily problem...

> but then I realized after my internist's appointment last week - that

> it IS a DAILY occurence (nowadays more often than not).

>

> Gotta git. Having another episode. Didn't get to finish, and left

> out much.

>

> Anyway, what's up with this lack of desire to do anything during such

> episodes. I mean, I am " content " to just sit and stare. Brain seems

> to be working - even if rest of it isn't.

>

> I know one thing I was going to add, was that I can usually shrug

> this stuff off, but today's episode was significant, and long-lived.

> Main brunt of it lasted over 1 hour, and actually effected me all

> afternoon and on till now (wee hours of morning - and now running me

> again - even after just awakening again - having gone " out of it "

> right before this screen - oh great! - oh well

>

> Catch you all later.

>

> Thanks for any and all input.

>

> Always appreciated.

>

>

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

GET HELP NOW.

You may have something not related to the illness at all. Could be infection.

Barb in Arlington

--

"The greater part of our happiness or misery depends on our dispositions,

and not our circumstances." --Martha Washington

[Guest guest]

HI BARB. MY WIFE (WHO IS JUST ONE OF MY 'CAREGIVERS' I HAVE 3

DAUGHTERS AS WELL - AND THE ELDEST - WHO IS BUT 11 - HAS REALLY TAKEN

IT UPON HERSELF TO WATCH ME AND HELP ME WHENEVER POSSIBLE...

ANYWAY, MY WIFE READ YOUR EMAIL WITH ME.

WHILE WE THANK YOU FOR THE RESPONSE, WE WONDER HOW WE'RE SUPPOSE TO

DO YOUR FIRST POINT? THE ONE THAT GOES...

" GET HELP NOW. "

HOW OR WHERE CAN I DO THIS? ESPECIALLY WHILE ON VACATION IN

CHICAGO? AND HOW AM I REALLY GOING TO GET ANY HELP, WHEN EACH

SPECIALIST I'VE SEEN HAS SAID 'YEP - YOU'VE GOT PROBLEMS WITH THE

SYSTEM I DEAL WITH - BUT IT'S NOT MY SYSTEM MESSING YOU UP - JUST MY

SYSTEM RESPONDING TO SOME OTHER PROBLEM' (WHICH ENDED UP BEING THE

AUTONOMIC ONE - AUTONOMIC NEUROPATHY, AND IT SEEMS THERE ISN'T

ANYTHING THAT CAN BE DONE FOR THAT.)

> You may have something not related to the illness at all. Could be

> infection.

WELL, I SAW MY INTERNIST BEFORE LEAVING, AND SHE CHECKED ME FOR UTI,

AND OTHER PROBLEMS. ON THE UTI, I CAME OUT CLEAN. SO IT'S NOT THAT -

AT LEAST NOT AT THIS MOMENT - BUT SEEMS THAT CAN POP UP - AND BE

GONE, AS WITH ANYTHING - IT CAN ALSO JUST BE THE NEUROPATHY AFFECTING

VARIOUS SYSTEMS. JUST LIKE THE CHEST PAINS - SOME OF WHICH SEEM

CONSISTENT WITH HEART PROBLEMS, BUT OTHERS WHICH ARE OBVIOUSLY

NEUROLOGIC IN ORIGIN (WHICH, REALISTICALLY, ALL ARE PROBABLY).

>

> Barb in Arlington

ANYWAY, THANKS BARB. I AM OPEN TO ANY INPUT. JUST THAT RIGHT NOW,

MY DOC IS JUST A SHADE AHEAD OF ME ON THIS THING - AND THAT IS ONLY

IN SOME AREAS - IN MANY, I'M AHEAD OF HER. WE'RE BOTH LEARNING

TOGETHER, BUT MORE AND MORE - SEEMS MY BODY JUST 'CRIES WOLF'. (LIKE

THIS PESKY LEFT EAR THAT SPORADICALLY THROWS JABBING PAINS - BUT HAS

NOTHING PHYSIOLOGICALLY WRONG WITH IT.)

> " The greater part of our happiness or misery depends on our

> dispositions, and not our circumstances. " --Martha Washington

YEP. AND I MUST ADMIT THAT MY DISPOSITION THE PAST 24 HOURS HAS NOT

BEEN AS GOOD AS NORMAL. I'M JUST NOT ACCEPTING THIS WELL. I AM

A 'GO GETTER' - ALWAYS HAVE BEEN - IN ALL I DO. I'M NOT USED TO

BEING ANYTHING LESS. A GREAT DEAL OF MY PROBLEM RIGHT NOW PROBABLY

RELATES TO A NEED TO BE HAPPY WITH LESS - LESS EXPECTATIONS OF

MYSELF. JUST THAT ANYTHING I'VE HAD BEFORE, THE MORE I PRESS ON -

THE MORE I WIN. WITH THIS, SEEMS THE MORE I PRESS ON - THE MORE I

LOSE. OR, I CERTAINLY DON'T SEEM TO BE WINNING. BUT, THEN AGAIN, BY

NOT GIVING UP, AND PRESSING ON - I DO KEEP GOING - AND DOING MORE

THAN EXPECTED.

IN REREADING MY RESPONSE, IT ALSO DAWNED ON ME THAT THIS WOULD ALL BE

A BIT EASIER TO SWALLOW IF I KNEW FROM DAY TO DAY OR MINUTE TO MINUTE

WHAT TO EXPECT, BUT IT ALL CHANGES ALL THE TIME. LIKE TODAY, I WAS

FEELING FINE, SO FIGURED I'D GO OUT TO EAT WITH EVERYONE. ATE FINE,

THEN IT HIT, AND DIDN'T STAY. YET, LAST NIGHT, WHEN BACK HOME AND

ATE, IT ALL STAYED FINE (BUT THE NIGHT BEFORE IT DIDN'T, AND WAS

STILL COMING UP IN THE MORNING) - JUST NOTHING CONSISTENT ABOUT THIS -

FOR ME ANYWAY - EXCEPT THE INCONSISTENCY - THAT IS CONSISTENT.

SAME THING WITH BALANCE, CHEST PAIN, NUMBNESS, UNCONTROLLABLE MUSCLE

MOVEMENTS...

ANYWAY, THANKS FOR RESPONDING. AND FOR THE MARTHA WASHINGTON QUOTE.

CATCH YA LATER.

PAUL

[Guest guest]

HI BILL.

> Why don't you start by telling us what medicines they have tried

(for what symptoms) and if they worked at all. That way we have some

idea of where you are.

WELL, I DON'T REALLY RECALL WHAT MEDS HAVE BEEN TRIED. AS FAR AS

VOMITING, THEY'VE TRIED JUST ABOUT EVERYTHING. NEXT STEP IS SUPPOSE

TO BE A JUOJENUM TUBE IF I LOSE ANY MORE WEIGHT. HOWEVER, IF I CAN

MAINTAIN, THEN THEY'LL LET ME KEEP EATING. I'VE LOST AROUND 65#

SINCE NOVEMBER - AND HAVE BEEN STABLE SINCE MARCH AT 135# - WHICH IS

CONSIDERED BELOW THE ACCEPTABLE LIMIT.

I AM CURRENTLY ON A BETA BLOCKER - TOPROL XL, 50 MG DAILY. I AM ON

THAT FOR MY MIGRAINES (AS A PREVENTATIVE - AS THEY THINK MY MIGRAINES

ARE CAUSING TIAS) IT'S NOT DOING ANYTHING FOR MY MIGRAINES (OF WHICH

I HAVE MULTIPLE ONES DAILY) BUT DOES SEEM TO HAVE ELEVATED MY BP. I

THOUGHT IT HAD STABILIZED IT - BUT THAT DOESN'T SEEM ACCURATE.

INSTEAD, SEEMS IT HAS ELEVATED IT, SO THAT WHEN IT DROPS, IT DOESN'T

GO DOWN TO 60S/30S. STILL DROPS - BUT EVEN THAT IS 'SOMETIMES'.

YOU SEE, NOTHING EVER SEEMS TO BE CONSISTENT. I FEEL LIKE MY BODY IS

AN OLD CAR... I TAKE IT TO THE MECHANIC, AND IT MIGHT PERFORM FINE

THERE - BUT THEN WHEN I GET IT HOME IT ACTS UP AGAIN. OR IT MIGHT

ACT UP FOR ONE MECHANIC WHO DOESN'T KNOW HOW TO FIX THAT PART - AND

THEN WHEN THEY SEND ME TO A SPECIALIST, THAT PART IS FUNCTIONING

BETTER. ALL QUITE FRUSTRATING.

KINDA LIKE THE ANTISPASMOTIC I'M ON. HYOSCYAMINE - SUBLINGUAL.

SOMETIMES IT HELPS WITH THE STOMACH AREA SPASMS - SOMETIMES IT SEEMS

TO HAVE NO EFFECT (SO I'M NOT EVEN SURE IT HELPS AT ALL

MY INTERNIST OFFERED FOR ME TO TRY SIMENTEL FOR THE HEAD BOBBING AND

HAND SHAKING AND... BUT I OPTED TO WAIT AS I DIDN'T KNOW IT WAS

HAPPENING DAILY. HOWEVER, I REALIZED WHEN I LEFT HER OFFICE THAT IT

HAS BEEN HAPPENING DAILY. THERE WAS 1 WEEK A FEW WEEKS AGO WHEN IT

DIDN'T SEEM SO SEVERE, BUT I WAS PROBABLY HAVING IT THEN TOO. SO,

GUESS WHEN I GET BACK TO OKLAHOMA I'LL CALL HER AND ASK HER TO PHONE

IN THE SCRIPT. SHE WILL DO SO (AS SHE SAW ALL OF IT IN HER OFFICE

DURING MY LAST VISIT).

SHE IS ALSO OPEN FOR ME TO SEE ANY OTHER SPECIALIST I NEED TO - IT'S

JUST WE'RE NOT SURE WHERE I SHOULD GO OR WHO I SHOULD SEE. I SAW ONE

OF THE GI DOCS WHO WAS SUPPOSE TO BE 'THE BEST' IN HIS FIELD - AS HE

WAS WORKING AT MAYO - BUT HIS TREATMENT WAS NO BETTER THAN THAT WHICH

I RECEIVED IN TULSA.

BACK TO MEDS... I AM VERY HESITANT TO TRY MEDS, AS I TEND TO HAVE

RESULTS SIMILAR TO WHAT TENACITY INFERS... THAT THE MEDS CAUSE ME TO

BE WORSE OFF THAN I WAS WITHOUT THEM. LIKE WHEN THEY GAVE ME PAIN

MEDS IN THE HOSPITAL IN DECEMBER WHEN THEY REMOVED MY GALL BLADDER -

BUT THE PAIN MEDS GAVE ME LITERALLY HALF A DOZEN - WHAT DID THEY CALL

THEM? NOT 'SIDE EFFECTS' - BUT THAT IS WHAT THEY WERE - FROM MY

PERSPECTIVE ANYWAY. I'VE ALWAYS BEEN HYPERSENSITIVE TO MEDS THOUGH.

ALWAYS. SO THIS IS NOTHING NEW.

>

> At this point if you are still walking, you should be NOT feel you

have " disabilities " as much as limitations.

WELL, I'M NOT SURE WHAT I WROTE. DIDN'T HAVE THE COURAGE TO LOOK AT

IT... BUT I WOULDN'T EVEN CONSIDER A WHEELCHAIR A DISABILITY - JUST

A LIMITATION, AND NOT MUCH OF ONE. IT ALL DEPENDS ON YOUR OUTLOOK.

YOU'RE RIGHT. SO IS BARB. I JUST GET SO FRUSTRATED WHEN MY BODY

SENDS ME FOR LOOPS. I MEAN YESTERDAY REALLY BLEW ME AWAY.

YES, I AM STILL WALKING. BUT, YES, I WOULD HAVE ACCEPTED A

WHEELCHAIR YESTERDAY TOO. BEST THAT I DIDN'T THOUGH - AS IT FORCED

ME TO GET UP AND GO. NOT TOO SMOOTHLY AT FIRST, BUT EVENTUALLY I WAS

ABLE TO GET BACK IN GEAR.

You MUST learn to accept " limitations "

AHHH... NOW THAT IS A TOUGHY FOR ME. I DON'T LIKE TO ACCEPT ANY

LIMITATION. I AM A 'GO GETTER' A TYPE A PERSONALITY - A 'DO'ER. ONE

WHO FEELS LIKE HE HAS TO BE GOING AND DOING ALL THE TIME. ONE WHO

TYPICALLY DOES MORE IN ONE DAY THAN MANY DO IN A WEEK, AND MORE IN A

MONTH THAN MOST DO IN A YEAR. I'M SERIOUS THERE TOO. FAMILY, GOD,

WORK, EXTRA WORK, BUILDLING A HOUSE, BUILDING A BARN... THE LIST

GOES ON...

SIMPLY PUT - I DON'T ACCEPT LIMITATIONS. I WOULD SAY I DON'T ACCEPT

THEM 'WELL' - BUT I THINK THE TRUTH IS THAT I JUST PLAIN 'DON'T

ACCEPT THEM'. I'LL HAVE MY WIFE READ THIS BEFORE I POST IT, AND SEE

IF SHE AGREES.

and work to find ways around them.

WELL, THAT IS WHAT I'VE BEEN WORKING AT. MY WIFE IS NOW MY DRIVER.

SHE IS MY PRIMARY SUPPORT. SHE IS THE REASON WE WERE ABLE TO MAKE

THIS TRIP, AND THE REASON I AM ABLE TO KEEP WORKING. YOU SEE, I WORK

ALL OVER NORTHEASTERN OKLAHOMA. WERE IT NOT FOR HER DRIVING ME, I

WOULD NOT BE ABLE TO WORK AT ALL.

NOW, THE HOUSE AND BARN AND ALL... THAT'S ANOTHER STORY... WE CAN'T

AFFORD TO HAVE SOMEONE ELSE FINISH THEM, AND MY PROGRESS IS SLOW.

PROBABLY NOT SLOW COMPARED TO WHAT A 'NORMAL' PERSON WOULD DO - BUT

COMPARED WITH HOW I USED TO BE, IT IS VERY SLOW. THIS IS TOUGH FOR

BOTH OF US TO ACCEPT. VERY TOUGH.

Do NOT let yourself get overtired.

OH, NOW THAT'S A REAL GOOD ONE! I'M TIRED ALL THE TIME. I USED TO

DENY IT, BUT THIS TRIP HAS MADE IT CLEAR. I AM TIRED. I AM JUST SO

USED TO PUSHING AND PUSHING... THAT'S THE WAY I MADE IT THROUGH

COLLEGE, AND GRADUATE SCHOOL, AND PRIVATE PRACTICE, AND... THAT'S

BEEN THE STORY OF MY LIFE. BUT I GUESS THE STORY NEEDS TO TAKE A NEW

TURN?

Take naps or rests during the day - plan them in fact.

THAT'S A GOOD ONE TOO. GUESS I COULD PLAN THEM THOUGH. BUT... THE

REALITY IS, THERE ARE TIMES I CANNOT STAY AWAKE, AND TIMES I DON'T

FEEL TIRED AT ALL. THERE ARE TIMES I'M WORKING (OR LIKE WHEN I WAS

POSTING LAST NIGHT) WHEN IT JUST SNEAKS UP ON ME AND BITES ME.

You probably need a siesta every day. PROBABLY.

If you feel the need for a wheelchair, WELL, CERTAINLY NOT ALL THE

TIME. VERY SELDOM IN FACT. IN FACT, YESTERDAY WAS THE FIRST TIME I

WOULD HAVE GLADLY ACCEPTED IT. ANYTIME IN THE PAST, I WOULD REJECT,

OR UNWILLINGLY ACCEPT.

accept it as it can help you keep going. YEP. GUESS THAT WILL BE

THE KEY... ACCEPT THINGS AS THEY COME - TO HELP ME KEEP GOING.

MY MAIN REASON FOR THE POST EARLY THIS A.M. WAS... WELL, GUESS THERE

WERE MANY REASONS... TO VENT, AND TO EXPRESS MY SHOCK AT WHAT

HAPPENED, AND TO ASK IF OTHERS HAD BEEN THROUGH SIMILAR EXPERIENCES,

AND... TO SEE THE IMPOSSIBLE - IF THIS WAS WHERE I AM HEADED - WHICH

NO ONE EXCEPT GOD KNOWS.

>

> Your family can help you pace yourself. WELL, THEY CAN HELP ME, IF

I ALLOW THEM TO - IF I ACCEPT THEIR DIRECTION.

Accept that they are just helping you out because they love you.

YEP, I 'KNOW' THAT - HEAD-WISE, BUT I AM HAVING A HARD TIME GETTING

IT DEEP INSIDE. I MEAN, WHEN I CAN TELL THAT MY ELDEST CHILD HAS

BEEN ASSIGNED TO ME (AS I'M SURE SHE WAS YESTERDAY - MY WIFE HAD ONE

CHILD, OUR 17 YEAR OLD NEPHEW HAD ANOTHER, AND OUR ELDEST CHILD HAD

ME IT'S JUST A BIT HARD TO ACCEPT. NO - IT'S VERY HARD TO

ACCEPT. I'M USED TO BEING THE CARETAKER, NOT THE RECIPIENT. I'M

USED TO BEING THE PARENT (NOT THE 'CHILD'). I'M USED TO BEING

THE 'PROVIDER' NOT THE ONE PROVIDED FOR.

Charlotte lived almost 7 years after accepting a w/c and used the

computer (at least the mouse) for six of those years. Exercise to

keep what movement you have.

WELL, I THINK IF THERE IS ANY PROBLEM I HAVE - IT IS NOT LIMITING

MYSELF ENOUGH - CERTAINLY NOT THAT I DON'T EXERCISE WHAT I HAVE

ENOUGH. AS I SAID, I KEEP PRESSING ON - TOO MUCH, ADMITTEDLY, MOST

LIKELY. BUT THEN AGAIN, YOU WOULDN'T KNOW IT, BECAUSE NO ONE HERE

KNOWS ME. AND, I'M SURE WHEN I MEET THOSE I WILL MEET AT DENVER,

I'LL SEEM TO MANY TO HAVE NOTHING WRONG AT ALL (BUT AS MY NEPHEW

FOUND OUT YESTERDAY, THAT CAN ALL CHANGE IN A MATTER OF MOMENTS).

ANYWAY, AS YOU SAID, IF I CAN WALK, IF I CAN 'DO'. IF I CAN WORK

(WHICH I CAN ONLY BECAUSE I HAVE ABOUT THE MOST IDEAL JOB ANYONE

COULD ASK FOR - BEING VIRTUALLY MY OWN BOSS AND WORKING THE HOURS I

CAN), THEN I HAVE MORE THAN PROBABLY 90% WHO POST ON THIS SITE.

IF YOU CAN TELL NOW, AFTER READING THIS POSTING OF CLARIFICATION,

WHAT I WAS ASKING FOR LAST NIGHT, THEN YOU'RE DOING BETTER THAN

ME. :-)

BUT, IF NOTHING ELSE, YOU (AND WHOEVER ELSE WANTS TO) KNOW ME BETTER.

IN A WAY, I REGRET NOT COMING OUT TO DC FOR THE NDRF SEMINAR, AS I

WOULD HAVE HAD A CHANCE AT GETTING TOGETHER WITH YOU AND YOURS. OF

COURSE, MY CONCERN THEN WAS THE SAME AS NOW - WHAT IF I GOT OUT

THERE, AND MY BODY DECIDED IT WASN'T GOING TO COOPERATE?

WHAT THEN? GO WITH THE FLOW (IF I UNDERSTAND YOU RIGHT). THAT'S

PRETTY MUCH WHAT WE'VE DONE ON THIS TRIP - WHICH WAS TO PUT US BACK

HOME TODAY - BUT WE'RE LATE - BECAUSE... I COULD SAY 'BECAUSE OF MY

BODY' - BUT... WE'RE JUST 'GOING WITH THE FLOW'.

PAUL

>

> Take care, Bill Werre

>

> ================================================

> >

> > From: " pulalupu "

> > Date: 2002/07/11 Thu AM 04:31:39 CDT

> > To: shydrager@y...

> > Subject: Help please... " Interesting " day

> >

> > Hi all.

> >

> > I need help. (So what's new?

> >

> > I sit here, head bobbing, and fatigued.

> >

> > My usual humor is not present, and was only there with effort

after

> > lunch.

> >

> > Something happened today, and now I am more concerned.

> >

> > We are still on vacation - in Chicago.

> >

> > We rode the train in from Naperville. That was neat! All

enjoyed it

> > (especially my wife, who enjoyed the break from driving

> >

> > First stop (by the time we got there) was eating lunch. We went

up 7

> > flights of escalators, and then found out we were 5 flights too

high

> > (typical for us

> >

> > So, we took the elevator down.

> >

> > As I awakened to vomit, and was still doing so in the train

station,

> > I opted out of lunch. I rummaged through a food related store,

and

> > did exit with a 40 cent biscuit (which I'm convinced was the best

> > bargain in the entire Water Tower Mall

> >

> > I sat down, and checked in with my wife via walkie talkie. Due

to my

> > weight loss, I opted to remain in the wicker chair in the

courtyard

> > area, as opposed to the iron chair in the restaurant.

> >

> > Not long after signing off... I pulled out my notepad (to make a

> > comment in it about my Mayo GI doc being wrong about not being

able

> > to vomit after a couple of hours - because I'd spent the morning

> > throwing up food eaten the night before).

> >

> > Half an hour later, I still had not one single word on the pad.

> >

> > What I experienced was " interesting " to say the least.

> >

> > I've had problems with my eyes spazzing. They were in full swing.

> > I've also had problems with poor visual-motor coordination. When

I

> > did finally begin writing - it was very slow, and even then, I

found

> > myself pausing uncontrollably.

> > I've had problems before with a numbing sensation that seems to

run

> > my entire body - and has some pain associated with it - but this

> > cause jerking as well.

> > I've had head bobbing - and this was among my worst.

> > What was really odd, was that I was thinking - perhaps slow - but

I

> > seemed to be thinking okay. I just couldn't get my body to

> > cooperate. Whether it was something someone said that deserved a

> > smile - or a comment... I

> > My vision was most often double. I could not bring it in - and

> > usually I can.

> > I remember sitting there - presenting in ways that were

admittedly

> > embarassing, but really... I didn't care. I just didn't want to

> > move.

> >

> > My family went to FAO Schweetz (the candy store) while my nephew

> > babysat me (sorry - but that's how it felt - and I have no idea

what

> > he was thinking as he watched me - but... I must not have been

too

> > entertaining - as he eventually fell asleep

> >

> > When my family did return, my eldest daughter suggested they get

a

> > wheelchair for me. My wife appeared to scold her for this (I was

> > still not " with it " ). The thing is... I WAS thinking that I

would

> > like one.

> >

> > This is not me. I am an independent man. I " do " for myself and

my

> > family. I " do " more than I should, but I " do " anyway.

> >

> > Anyway, I don't know what I want from you.

> >

> > I really don't.

> >

> > I'm confused.

> >

> > I'd say I'm tired, and I am - but not all that much. No more so

than

> > normal.

> >

> > When we got home, I sat on the couch, and went back to a comatose

> > state. I recall someone saying that they thought it best I stay

home

> > tonight - and the next thing I know is they're waking me up from

the

> > floor (hours later) telling me that I need to go to bed.

> >

> > I sit here, and my head is bobbing, eyes are seeing double, and

hand

> > coordination is impaired.

> >

> > I think I'm starting to get concerned.

> >

> > A doc at Mayo told me I'd been lying to myself. Well, perhaps

he's

> > right, but what good does it do to lick wounds?

> >

> > Anyway, I am beginning to see where even my clients (I work with

the

> > mentally retarded) might not want me working with them. Most of

the

> > time I can cover things up - with humor if nothing else - but I

fear

> > it may be reaching the point where this is no longer possible.

> >

> > I am not ready to be disabled. Perhaps that is it. But, on the

> > other hand, I'm not relishing the end of this trip either. I'm

> > working some (very little) while gone, but I really don't know

what's

> > going to happen when I go to an interdisciplinary team meeting

and

> > display behavior similar to what I did today.

> >

> > Guess I'll cross that bridge when I get there.

> >

> > I think, in my own denialist sort of way... I have been saying

to

> > myself that this would not come. I have refused to believe that

it

> > is real. I've refused to believe that

> >

> > Someone said that Sinemet has helped. Perhaps I'll give that a

try.

> > I really had wanted to wait on that until it was a daily

problem...

> > but then I realized after my internist's appointment last week -

that

> > it IS a DAILY occurence (nowadays more often than not).

> >

> > Gotta git. Having another episode. Didn't get to finish, and

left

> > out much.

> >

> > Anyway, what's up with this lack of desire to do anything during

such

> > episodes. I mean, I am " content " to just sit and stare. Brain

seems

> > to be working - even if rest of it isn't.

> >

> > I know one thing I was going to add, was that I can usually shrug

> > this stuff off, but today's episode was significant, and long-

lived.

> > Main brunt of it lasted over 1 hour, and actually effected me all

> > afternoon and on till now (wee hours of morning - and now running

me

> > again - even after just awakening again - having gone " out of it "

> > right before this screen - oh great! - oh well

> >

> > Catch you all later.

> >

> > Thanks for any and all input.

> >

> > Always appreciated.

> >

> >

> >

> >

> > If you do not wish to belong to shydrager, you may

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

> >

> >

> >

> >

[Guest guest]

,

You seem to be on pills I take for my heart rather than those my wife took for

MSA. I also take Toprol XL and aspirin.

Take care, Bill Werre

[Guest guest]

,

the only thing you will find with this illness/condition is that inconsistancy is the only thing consistant.

I can't tell you how may times the spirit said go for it and the body said No you don't.

I am doing my best to try to find work, but when you tell employers of possible problems you may have during the day, jobs do not come along.

ZMy doctor just told me to "volunteer". While that is a noble gesture, it doesn't put bacon on the table. I told him I didn't see doctors volunteering in Vegas to get some of us some free treatments. He didn't hear me I thnk.

I'm now wheel chair bound most of the time. Then there was the hassle of trying to get the insurance to understand that I needed one. We finally ( my wife and I) were able to scrape up enough money to buy one. It was costing more to rent the darn thing than it would have been to buy it outright. But, If you need a chair, get a chair! I hate the darn thing, but if I don't use it, I sit at home.

Can yo drive? I lost my driving priviledges about two months ago. It kills me just to stay at home. Can't go anywhere unless the wife drives me or I take public transportation which she doesn't want me to do because "if something happens" what would they do?

Take care, sorry to vent, but keep your chin up and keep writing to us. Write me personally if you need too. I don't have answers, but I know what you're goign through.

Dr. Ray

-- Re: Help please... "Interesting" day

HI BARB. MY WIFE (WHO IS JUST ONE OF MY 'CAREGIVERS' I HAVE 3 DAUGHTERS AS WELL - AND THE ELDEST - WHO IS BUT 11 - HAS REALLY TAKEN IT UPON HERSELF TO WATCH ME AND HELP ME WHENEVER POSSIBLE...ANYWAY, MY WIFE READ YOUR EMAIL WITH ME.WHILE WE THANK YOU FOR THE RESPONSE, WE WONDER HOW WE'RE SUPPOSE TO DO YOUR FIRST POINT? THE ONE THAT GOES..."GET HELP NOW."HOW OR WHERE CAN I DO THIS? ESPECIALLY WHILE ON VACATION IN CHICAGO? AND HOW AM I REALLY GOING TO GET ANY HELP, WHEN EACH SPECIALIST I'VE SEEN HAS SAID 'YEP - YOU'VE GOT PROBLEMS WITH THE SYSTEM I DEAL WITH - BUT IT'S NOT MY SYSTEM MESSING YOU UP - JUST MY SYSTEM RESPONDING TO SOME OTHER PROBLEM' (WHICH ENDED UP BEING THE AUTONOMIC ONE - AUTONOMIC NEUROPATHY, AND IT SEEMS THERE ISN'T ANYTHING THAT CAN BE DONE FOR THAT.)> You may have something not related to the illness at all. Could be> infection.WELL, I SAW MY INTERNIST BEFORE LEAVING, AND SHE CHECKED ME FOR UTI, AND OTHER PROBLEMS. ON THE UTI, I CAME OUT CLEAN. SO IT'S NOT THAT -AT LEAST NOT AT THIS MOMENT - BUT SEEMS THAT CAN POP UP - AND BE GONE, AS WITH ANYTHING - IT CAN ALSO JUST BE THE NEUROPATHY AFFECTING VARIOUS SYSTEMS. JUST LIKE THE CHEST PAINS - SOME OF WHICH SEEM CONSISTENT WITH HEART PROBLEMS, BUT OTHERS WHICH ARE OBVIOUSLY NEUROLOGIC IN ORIGIN (WHICH, REALISTICALLY, ALL ARE PROBABLY).> > Barb in Arlington ANYWAY, THANKS BARB. I AM OPEN TO ANY INPUT. JUST THAT RIGHT NOW, MY DOC IS JUST A SHADE AHEAD OF ME ON THIS THING - AND THAT IS ONLY IN SOME AREAS - IN MANY, I'M AHEAD OF HER. WE'RE BOTH LEARNING TOGETHER, BUT MORE AND MORE - SEEMS MY BODY JUST 'CRIES WOLF'. (LIKE THIS PESKY LEFT EAR THAT SPORADICALLY THROWS JABBING PAINS - BUT HAS NOTHING PHYSIOLOGICALLY WRONG WITH IT.)> "The greater part of our happiness or misery depends on our> dispositions, and not our circumstances." --Martha WashingtonYEP. AND I MUST ADMIT THAT MY DISPOSITION THE PAST 24 HOURS HAS NOT BEEN AS GOOD AS NORMAL. I'M JUST NOT ACCEPTING THIS WELL. I AM A 'GO GETTER' - ALWAYS HAVE BEEN - IN ALL I DO. I'M NOT USED TO BEING ANYTHING LESS. A GREAT DEAL OF MY PROBLEM RIGHT NOW PROBABLY RELATES TO A NEED TO BE HAPPY WITH LESS - LESS EXPECTATIONS OF MYSELF. JUST THAT ANYTHING I'VE HAD BEFORE, THE MORE I PRESS ON - THE MORE I WIN. WITH THIS, SEEMS THE MORE I PRESS ON - THE MORE I LOSE. OR, I CERTAINLY DON'T SEEM TO BE WINNING. BUT, THEN AGAIN, BY NOT GIVING UP, AND PRESSING ON - I DO KEEP GOING - AND DOING MORE THAN EXPECTED.IN REREADING MY RESPONSE, IT ALSO DAWNED ON ME THAT THIS WOULD ALL BE A BIT EASIER TO SWALLOW IF I KNEW FROM DAY TO DAY OR MINUTE TO MINUTE WHAT TO EXPECT, BUT IT ALL CHANGES ALL THE TIME. LIKE TODAY, I WAS FEELING FINE, SO FIGURED I'D GO OUT TO EAT WITH EVERYONE. ATE FINE, THEN IT HIT, AND DIDN'T STAY. YET, LAST NIGHT, WHEN BACK HOME AND ATE, IT ALL STAYED FINE (BUT THE NIGHT BEFORE IT DIDN'T, AND WAS STILL COMING UP IN THE MORNING) - JUST NOTHING CONSISTENT ABOUT THIS -FOR ME ANYWAY - EXCEPT THE INCONSISTENCY - THAT IS CONSISTENT.SAME THING WITH BALANCE, CHEST PAIN, NUMBNESS, UNCONTROLLABLE MUSCLE MOVEMENTS...ANYWAY, THANKS FOR RESPONDING. AND FOR THE MARTHA WASHINGTON QUOTE.CATCH YA LATER.PAULIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

,

I don't know about LV, but around my area they have a special bus system for

handicapped people which comes to your home and will take you to doctor's

appointments (and home) as well as a few other things. If your income is low

enough, it costs you nothing, otherwise it costs a dollar a ride. You have to

make the appointments a week in advance. But every bus has a w/c lift.

Have you checked on want benefits are available in LV? Check with your Agency

on Aging (while they are supposed to be for the elderly, Charlotte was still

elgible since she was handicapped). If they can not help you, they can at least

point you to the correct people. Much better here than Social Services. Public

health services can also evaluate you and help you find services (which you paid

taxes for the services already).

Take care, Bill Werre<<<<<<<<<<<<<<<<<<<<<< Reply

separator>>>>>>>>>>>>>>>>>>>>.

>

>

> Date: 2002/07/12 Fri AM 08:59:45 CDT> To: shydrager >

> Subject: Re: Help please... " Interesting " day

>

> ,

>

> the only thing you will find with this illness/condition is that

> inconsistancy is the only thing consistant.

>

>

>

> I can't tell you how may times the spirit said go for it and the body said

> No you don't.

>

>

>

> I am doing my best to try to find work, but when you tell employers of

> possible problems you may have during the day, jobs do not come along.

>

>

>

> ZMy doctor just told me to " volunteer " . While that is a noble gesture, it

> doesn't put bacon on the table. I told him I didn't see doctors

> volunteering in Vegas to get some of us some free treatments. He didn't

> hear me I thnk.

>

>

>

> I'm now wheel chair bound most of the time. Then there was the hassle of

> trying to get the insurance to understand that I needed one. We finally (

> my wife and I) were able to scrape up enough money to buy one. It was

> costing more to rent the darn thing than it would have been to buy it

> outright. But, If you need a chair, get a chair! I hate the darn thing,

> but if I don't use it, I sit at home.

>

>

>

> Can yo drive? I lost my driving priviledges about two months ago. It kills

> me just to stay at home. Can't go anywhere unless the wife drives me or I

> take public transportation which she doesn't want me to do because " if

> something happens " what would they do?

>

>

>

> Take care, sorry to vent, but keep your chin up and keep writing to us.

> Write me personally if you need too. I don't have answers, but I know what

> you're goign through.

>

>

>

> Dr. Ray

>

>

>

> -- Re: Help please... " Interesting " day

>

>

>

> HI BARB. MY WIFE (WHO IS JUST ONE OF MY 'CAREGIVERS' I HAVE 3

>

> DAUGHTERS AS WELL - AND THE ELDEST - WHO IS BUT 11 - HAS REALLY TAKEN

>

> IT UPON HERSELF TO WATCH ME AND HELP ME WHENEVER POSSIBLE...

>

>

>

> ANYWAY, MY WIFE READ YOUR EMAIL WITH ME.

>

>

>

> WHILE WE THANK YOU FOR THE RESPONSE, WE WONDER HOW WE'RE SUPPOSE TO

>

> DO YOUR FIRST POINT? THE ONE THAT GOES...

>

>

>

> " GET HELP NOW. "

>

>

>

> HOW OR WHERE CAN I DO THIS? ESPECIALLY WHILE ON VACATION IN

>

> CHICAGO? AND HOW AM I REALLY GOING TO GET ANY HELP, WHEN EACH

>

> SPECIALIST I'VE SEEN HAS SAID 'YEP - YOU'VE GOT PROBLEMS WITH THE

>

> SYSTEM I DEAL WITH - BUT IT'S NOT MY SYSTEM MESSING YOU UP - JUST MY

>

> SYSTEM RESPONDING TO SOME OTHER PROBLEM' (WHICH ENDED UP BEING THE

>

> AUTONOMIC ONE - AUTONOMIC NEUROPATHY, AND IT SEEMS THERE ISN'T

>

> ANYTHING THAT CAN BE DONE FOR THAT.)

>

>

>

> > You may have something not related to the illness at all. Could be

>

> > infection.

>

>

>

> WELL, I SAW MY INTERNIST BEFORE LEAVING, AND SHE CHECKED ME FOR UTI,

>

> AND OTHER PROBLEMS. ON THE UTI, I CAME OUT CLEAN. SO IT'S NOT THAT -

>

> AT LEAST NOT AT THIS MOMENT - BUT SEEMS THAT CAN POP UP - AND BE

>

> GONE, AS WITH ANYTHING - IT CAN ALSO JUST BE THE NEUROPATHY AFFECTING

>

> VARIOUS SYSTEMS. JUST LIKE THE CHEST PAINS - SOME OF WHICH SEEM

>

> CONSISTENT WITH HEART PROBLEMS, BUT OTHERS WHICH ARE OBVIOUSLY

>

> NEUROLOGIC IN ORIGIN (WHICH, REALISTICALLY, ALL ARE PROBABLY).

>

> >

>

> > Barb in Arlington

>

>

>

> ANYWAY, THANKS BARB. I AM OPEN TO ANY INPUT. JUST THAT RIGHT NOW,

>

> MY DOC IS JUST A SHADE AHEAD OF ME ON THIS THING - AND THAT IS ONLY

>

> IN SOME AREAS - IN MANY, I'M AHEAD OF HER. WE'RE BOTH LEARNING

>

> TOGETHER, BUT MORE AND MORE - SEEMS MY BODY JUST 'CRIES WOLF'. (LIKE

>

> THIS PESKY LEFT EAR THAT SPORADICALLY THROWS JABBING PAINS - BUT HAS

>

> NOTHING PHYSIOLOGICALLY WRONG WITH IT.)

>

>

>

> > " The greater part of our happiness or misery depends on our

>

> > dispositions, and not our circumstances. " --Martha Washington

>

>

>

> YEP. AND I MUST ADMIT THAT MY DISPOSITION THE PAST 24 HOURS HAS NOT

>

> BEEN AS GOOD AS NORMAL. I'M JUST NOT ACCEPTING THIS WELL. I AM

>

> A 'GO GETTER' - ALWAYS HAVE BEEN - IN ALL I DO. I'M NOT USED TO

>

> BEING ANYTHING LESS. A GREAT DEAL OF MY PROBLEM RIGHT NOW PROBABLY

>

> RELATES TO A NEED TO BE HAPPY WITH LESS - LESS EXPECTATIONS OF

>

> MYSELF. JUST THAT ANYTHING I'VE HAD BEFORE, THE MORE I PRESS ON -

>

> THE MORE I WIN. WITH THIS, SEEMS THE MORE I PRESS ON - THE MORE I

>

> LOSE. OR, I CERTAINLY DON'T SEEM TO BE WINNING. BUT, THEN AGAIN, BY

>

> NOT GIVING UP, AND PRESSING ON - I DO KEEP GOING - AND DOING MORE

>

> THAN EXPECTED.

>

>

>

> IN REREADING MY RESPONSE, IT ALSO DAWNED ON ME THAT THIS WOULD ALL BE

>

> A BIT EASIER TO SWALLOW IF I KNEW FROM DAY TO DAY OR MINUTE TO MINUTE

>

> WHAT TO EXPECT, BUT IT ALL CHANGES ALL THE TIME. LIKE TODAY, I WAS

>

> FEELING FINE, SO FIGURED I'D GO OUT TO EAT WITH EVERYONE. ATE FINE,

>

> THEN IT HIT, AND DIDN'T STAY. YET, LAST NIGHT, WHEN BACK HOME AND

>

> ATE, IT ALL STAYED FINE (BUT THE NIGHT BEFORE IT DIDN'T, AND WAS

>

> STILL COMING UP IN THE MORNING) - JUST NOTHING CONSISTENT ABOUT THIS -

>

> FOR ME ANYWAY - EXCEPT THE INCONSISTENCY - THAT IS CONSISTENT.

>

>

>

> SAME THING WITH BALANCE, CHEST PAIN, NUMBNESS, UNCONTROLLABLE MUSCLE

>

> MOVEMENTS...

>

>

>

> ANYWAY, THANKS FOR RESPONDING. AND FOR THE MARTHA WASHINGTON QUOTE.

>

>

>

> CATCH YA LATER.

>

>

>

> PAUL

>

>

>

>

>

> If you do not wish to belong to shydrager, you may

>

> unsubscribe by sending a blank email to

>

>

>

> shydrager-unsubscribe

>

>

>

>

>

>

>

>

>

>

[Guest guest]

HI BILL.

WERE YOU REPLYING TO ME, OR TO RAY?

I DON'T LIVE IN LV. RAY DOES.

I LIVE IN NE OK.

WE HAVE PUBLIC TRANSPORTATION - BUT NO REDUCED RATES - NO MATTER THE

HANDICAP. OUR BUSES ARE ACTUALLY VANS - AND RUN VERY LIMITED

SCHEDULES - PLUS DON'T COME OUT THIS FAR. WE LIVE IN THE STICKS.

BUT... WE ARE PLANNING ON MOVING, SO MIGHT BE WORTH IT TO LOOK INTO

AN AREA WHERE THEY DO RUN.

SO FAR, MY WIFE HAS BEEN A REAL TROOPER, AND TAKES ME EVERYWHERE.

GETTING USED TO IT - BUT I DID GET TO DRIVE FROM ONE PART OF THE PARK

WE CAMPED IN A DAY AGO - TO ANOTHER PART. CHEAP THRILLS - BUT IT

REALLY WAS FUN! OF COURSE, RIGHT AT THIS MOMENT - I WOULDN'T EVEN

WANT TO VENTURE OUT TO DO THAT. EYES ARE BUGGIN OUT SOMETHING FIERCE.

ANYWAY, THANKS FOR ADDING THINGS TO CONSIDER, AND SOURCES FOR ME TO

CHECK OUT.

PAUL

> ,

>

> I don't know about LV, but around my area they have a special bus

system for handicapped people which comes to your home and will take

you to doctor's appointments (and home) as well as a few other

things. If your income is low enough, it costs you nothing,

otherwise it costs a dollar a ride. You have to make the

appointments a week in advance. But every bus has a w/c lift.

>

> Have you checked on want benefits are available in LV? Check with

your Agency on Aging (while they are supposed to be for the elderly,

Charlotte was still elgible since she was handicapped). If they can

not help you, they can at least point you to the correct people.

Much better here than Social Services. Public health services can

also evaluate you and help you find services (which you paid taxes

for the services already).

>

> Take care, Bill Werre<<<<<<<<<<<<<<<<<<<<<< Reply

separator>>>>>>>>>>>>>>>>>>>>.

> >

> > From: " Ray "

> > Date: 2002/07/12 Fri AM 08:59:45 CDT> To:

> > Subject: Re: Help please... " Interesting " day

> >

> > ,

> >

> > the only thing you will find with this illness/condition is that

> > inconsistancy is the only thing consistant.

> >

> >

> >

> > I can't tell you how may times the spirit said go for it and the

body said

> > No you don't.

> >

> >

> >

> > I am doing my best to try to find work, but when you tell

employers of

> > possible problems you may have during the day, jobs do not come

along.

> >

> >

> >

> > ZMy doctor just told me to " volunteer " . While that is a noble

gesture, it

> > doesn't put bacon on the table. I told him I didn't see doctors

> > volunteering in Vegas to get some of us some free treatments.

He didn't

> > hear me I thnk.

> >

> >

> >

> > I'm now wheel chair bound most of the time. Then there was the

hassle of

> > trying to get the insurance to understand that I needed one. We

finally (

> > my wife and I) were able to scrape up enough money to buy one.

It was

> > costing more to rent the darn thing than it would have been to

buy it

> > outright. But, If you need a chair, get a chair! I hate the

darn thing,

> > but if I don't use it, I sit at home.

> >

> >

> >

> > Can yo drive? I lost my driving priviledges about two months

ago. It kills

> > me just to stay at home. Can't go anywhere unless the wife

drives me or I

> > take public transportation which she doesn't want me to do

because " if

> > something happens " what would they do?

> >

> >

> >

> > Take care, sorry to vent, but keep your chin up and keep writing

to us.

> > Write me personally if you need too. I don't have answers, but I

know what

> > you're goign through.

> >

> >

> >

> > Dr. Ray

> >

> >

> >

> > -- Re: Help please... " Interesting " day

> >

> >

> >

> > HI BARB. MY WIFE (WHO IS JUST ONE OF MY 'CAREGIVERS' I HAVE 3

> >

> > DAUGHTERS AS WELL - AND THE ELDEST - WHO IS BUT 11 - HAS REALLY

TAKEN

> >

> > IT UPON HERSELF TO WATCH ME AND HELP ME WHENEVER POSSIBLE...

> >

> >

> >

> > ANYWAY, MY WIFE READ YOUR EMAIL WITH ME.

> >

> >

> >

> > WHILE WE THANK YOU FOR THE RESPONSE, WE WONDER HOW WE'RE SUPPOSE

TO

> >

> > DO YOUR FIRST POINT? THE ONE THAT GOES...

> >

> >

> >

> > " GET HELP NOW. "

> >

> >

> >

> > HOW OR WHERE CAN I DO THIS? ESPECIALLY WHILE ON VACATION IN

> >

> > CHICAGO? AND HOW AM I REALLY GOING TO GET ANY HELP, WHEN EACH

> >

> > SPECIALIST I'VE SEEN HAS SAID 'YEP - YOU'VE GOT PROBLEMS WITH THE

> >

> > SYSTEM I DEAL WITH - BUT IT'S NOT MY SYSTEM MESSING YOU UP - JUST

MY

> >

> > SYSTEM RESPONDING TO SOME OTHER PROBLEM' (WHICH ENDED UP BEING

THE

> >

> > AUTONOMIC ONE - AUTONOMIC NEUROPATHY, AND IT SEEMS THERE ISN'T

> >

> > ANYTHING THAT CAN BE DONE FOR THAT.)

> >

> >

> >

> > > You may have something not related to the illness at all. Could

be

> >

> > > infection.

> >

> >

> >

> > WELL, I SAW MY INTERNIST BEFORE LEAVING, AND SHE CHECKED ME FOR

UTI,

> >

> > AND OTHER PROBLEMS. ON THE UTI, I CAME OUT CLEAN. SO IT'S NOT

THAT -

> >

> > AT LEAST NOT AT THIS MOMENT - BUT SEEMS THAT CAN POP UP - AND BE

> >

> > GONE, AS WITH ANYTHING - IT CAN ALSO JUST BE THE NEUROPATHY

AFFECTING

> >

> > VARIOUS SYSTEMS. JUST LIKE THE CHEST PAINS - SOME OF WHICH SEEM

> >

> > CONSISTENT WITH HEART PROBLEMS, BUT OTHERS WHICH ARE OBVIOUSLY

> >

> > NEUROLOGIC IN ORIGIN (WHICH, REALISTICALLY, ALL ARE PROBABLY).

> >

> > >

> >

> > > Barb in Arlington

> >

> >

> >

> > ANYWAY, THANKS BARB. I AM OPEN TO ANY INPUT. JUST THAT RIGHT NOW,

> >

> > MY DOC IS JUST A SHADE AHEAD OF ME ON THIS THING - AND THAT IS

ONLY

> >

> > IN SOME AREAS - IN MANY, I'M AHEAD OF HER. WE'RE BOTH LEARNING

> >

> > TOGETHER, BUT MORE AND MORE - SEEMS MY BODY JUST 'CRIES WOLF'.

(LIKE

> >

> > THIS PESKY LEFT EAR THAT SPORADICALLY THROWS JABBING PAINS - BUT

HAS

> >

> > NOTHING PHYSIOLOGICALLY WRONG WITH IT.)

> >

> >

> >

> > > " The greater part of our happiness or misery depends on our

> >

> > > dispositions, and not our circumstances. " --Martha Washington

> >

> >

> >

> > YEP. AND I MUST ADMIT THAT MY DISPOSITION THE PAST 24 HOURS HAS

NOT

> >

> > BEEN AS GOOD AS NORMAL. I'M JUST NOT ACCEPTING THIS WELL. I AM

> >

> > A 'GO GETTER' - ALWAYS HAVE BEEN - IN ALL I DO. I'M NOT USED TO

> >

> > BEING ANYTHING LESS. A GREAT DEAL OF MY PROBLEM RIGHT NOW

PROBABLY

> >

> > RELATES TO A NEED TO BE HAPPY WITH LESS - LESS EXPECTATIONS OF

> >

> > MYSELF. JUST THAT ANYTHING I'VE HAD BEFORE, THE MORE I PRESS ON -

> >

> > THE MORE I WIN. WITH THIS, SEEMS THE MORE I PRESS ON - THE MORE I

> >

> > LOSE. OR, I CERTAINLY DON'T SEEM TO BE WINNING. BUT, THEN AGAIN,

BY

> >

> > NOT GIVING UP, AND PRESSING ON - I DO KEEP GOING - AND DOING MORE

> >

> > THAN EXPECTED.

> >

> >

> >

> > IN REREADING MY RESPONSE, IT ALSO DAWNED ON ME THAT THIS WOULD

ALL BE

> >

> > A BIT EASIER TO SWALLOW IF I KNEW FROM DAY TO DAY OR MINUTE TO

MINUTE

> >

> > WHAT TO EXPECT, BUT IT ALL CHANGES ALL THE TIME. LIKE TODAY, I

WAS

> >

> > FEELING FINE, SO FIGURED I'D GO OUT TO EAT WITH EVERYONE. ATE

FINE,

> >

> > THEN IT HIT, AND DIDN'T STAY. YET, LAST NIGHT, WHEN BACK HOME AND

> >

> > ATE, IT ALL STAYED FINE (BUT THE NIGHT BEFORE IT DIDN'T, AND WAS

> >

> > STILL COMING UP IN THE MORNING) - JUST NOTHING CONSISTENT ABOUT

THIS -

> >

> > FOR ME ANYWAY - EXCEPT THE INCONSISTENCY - THAT IS CONSISTENT.

> >

> >

> >

> > SAME THING WITH BALANCE, CHEST PAIN, NUMBNESS, UNCONTROLLABLE

MUSCLE

> >

> > MOVEMENTS...

> >

> >

> >

> > ANYWAY, THANKS FOR RESPONDING. AND FOR THE MARTHA WASHINGTON

QUOTE.

> >

> >

> >

> > CATCH YA LATER.

> >

> >

> >

> > PAUL

> >

> >

> >

> >

> >

> > If you do not wish to belong to shydrager, you may

> >

> > unsubscribe by sending a blank email to

> >

> >

> >

> > shydrager-unsubscribe@y...

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >