Huge archive

Hello Pat,
Thank you VERY much for your reply! This is exactly the kind off communication
that makes me believe in the Internet - despite all spamming and virus threats!
While Temgesic is listed in the Swedish open pharmacology (FASS),
Transtec and Valoid are not - which means I have to do some more research on
these items, before discussing them with our family doctor. (Unlike many
others, we do have one - at least presently! And not only is she highly
qualified and meticulous, but a charming, caring and lovable person as well...
So naturally, a large number of patients are competing for her attention, and I
am rather anxious to do my homework before suggesting one thing or another.)
Maybe I am a bit to optimistic in searching for a remedy, but then again:
Haldol (haloperidol) is not an anti-emetic as such, so its effect on
morphine-induced nausea ought to have been discovered more or less by chance.
Consequently, a network such as TPP might draw the attention to a similar "lucky
accident" in connection with Duragesic - don´t you think?
-------
As regards rashes, burns or allergic reactions to the adhesives, I´m a bit
hesitant to offer my two cents worth - but then again, as a matter of
consequence:
At an early stage of using the s.c.-pump, the nurses began applying Skin-Prep
(Smith & Nephew) under the Tegaderm patch that held the needle in place.
And, when switching to Duragesic patches, they continued to use Skin-Prep..
So far, Else has had no skin irritations whatever, and the Skin-Prep doesn´t
seem to interfere with absorption. Still - since we do not know if this is
authorized by either supplier - we will not proclaim this as THE solution - only
as a possibility.
-------
And oh yes - I just saw your recent postings...
I can only join the other members in hoping you'll get better soon!
Best regards,
Lars
Lars Olle Persson
Järnvägsgatan 31, 264 33 KLIPPAN
Tel. 0435-142 54, mobil 070-78 77 128
--

Gareth.,...thank you for writing adn telling us about your dad ! He
is an absolute riot adn I can see you have a bit of his wickedness
in you too ! And the picture you paint of having to surgically
remove the keyboard from your dad's hands had me laughing out
loud ! I know my family thinks me mad at times...but it's usually
just some hijinks your dad is up to adn lately the go-round with him
and LIsa over the darling guinea pig she has !
Pass on to you father that we love him and miss him but he first
must get well !
Hugs to all of your family...Jeannine

SO Barbara...please tell me you can FIRE this doctor and find
yourself a competent one !?!?! Not being able to find your lab
results is awful ! Giving you a medicine that CAUSES the very thing
you are trying to FIX is incompetence at it's worst !!!!! You need
to call the doctor and tell him what you found out !
This is almost criminal the way you have been being treated !
I hope you find some pain relief soon....
Hugs, Jeannine
ps...I'll bet you anything he's gotten the results from your sadist
in London but his filing system is so out of date he can't find his
way out of a wet paper bag !!!!

Mark had the evaluation at the Pain and Rehab Clinic today. It was
really impressive. Up until now, every pain doctor has told us that is
it okay for him to be on heavy narcotics forever, as long as it eases
his pain. They have said that he can go to rehab, but there was no pain
doctor to supervise the rehab, which didn't make any sense to us.
We were first evaluated by a psychologist, who had Mark fill out a
million questionnaires, and then spent an hour with us to determine his
frame of mind and the dynamics at home. Next, we met with the pain
doctor who performed a thorough physical examination and basically
checked all of his muscles. He said that he can prescribe other drugs
that Mark can take that will lessen the need for the pain drugs. The
pain doctor and the psychologist will meet tomorrow and figure out a
program for him that addresses all of his issues.
The facility has a workout room for physical therapy and a full kitchen
(so you can learn to do things that you have been unable to do). The
brochure said that they also have heat therapy and a pool. They have
group, individual, couples and family therapy. They have a four-week,
80-hour day program. They are going to call us tomorrow with their
recommendations.
At first, my insurance would not cover this facility as a network
provider. After I went to other so-called "pain programs" that just
wanted to prescribe drugs, and told them the difference, they agreed to
cover this one. As soon as they determine the program, I am going to
work on getting him transportation, since it would be at least two
three-hour round trips to take him there and home every day. (It is
only about ten miles from our house, but in Chicago traffic, that's
close to an hour to get downtown - worse if there are any accidents on
the highway.
I will keep you posted....
Eileen

Hello,
My name is Gareth, I am Pat's oldest son, the real good-looking hunk
in the pictures 8-).
My Mom, Lily, has just dragged that lunatic father of ours away to
his bed. He only got home about 3/4 of an hour ago after almost 12
hours in the A & E at the hospital.
He has been in lots of pain for the past life time it seems, but it
has been especially bad over the past weekend. He has not been
sleeping and his chest has gotten worse rather than better. He never
has anything like that, probably the only thing he has missed until
now.
He had some CT scan yesterday, i expect you will all know what it
was, I don't thank God and it seems he has had a reaction to some dye
they used during the angiogram part of it. He almost collapsed from
pain earlier today and when he rang Mam at work she rang the Doctor
and she sent the Ambulance for him.
They rested him and checked his bloods, again? and all his @levels@
were ok, one or two were very low, a doc said it was from something
not working properly anymore, I'm not surprised!
They have given him injections and IV's all day and they only allowed
him home on a promise to rest and take it easy. He was WARNED not to
even use the computer, they had to surgically remove the keyboard
from his white knuckles, he lives at his computers.
Mom let him just"check" mails while she made some tea and a snack for
him, of course she caught him typing and all hell broke loose.
She has taken his laptop and has it in her car, and she is taking his
broadband modem when I finish this email to all of you.
[[[ he needs a new keyboard!]]]
Mom says she will not give in for the rest of the week, and believe
me, if she said it, she means it, no arguing there.
I don't think he is likely to be back on until Monday maybe, if I get
a chance over the weekend I will email and tell youhow he is, unless
of course he finds some other way around his prison cell!!!1LAUGHING
ALL OVER THE HOUSE!!!!!!!! AHHHH!! He's MAD, PURE MAD! How do you
all put up with him, i don't know.
Please take care of yourselves, Dad says most of you are really ill
compared to him, he says he admires all of your courage, I do too.
Goodbye,
Gareth
Number One Son.

Gareth,
Thank you for letting us know about your dad. Will you please tell him if he
doe not listen to your mam and the doctor I will send him a guinea pig in the
mail to keep in company in that hospital bed! Please tell your mam she must be
one heck of strong woman to live that man! We love him to bits and will miss
him while he recovers but he better listen to the doctor and your mam or HE WILL
GET A GUINEA PIG IN THE MAIL! Please keep us posted on his health as we will
be worried.
Lisa
Simi Valley, CA

Hello Vicky,
I was reading your post to Robert and i know that he will be in touch
with you ASAP, he is struggling with his sugars, it's a 24/7 deal
with his Brittle diabetes.
Now Vicky, I am absolutely no expert, and what I say is opinion etc.
and everyone here is aware that Robert will always be up front with
you.
However, I cannot let your post go without making a comment, even
though you have not asked for it OK?
Executing a CONTROLLED BURNOUT is a NO NO - PERIOD! I will be very
surprised if Robert says anything different. I cannot give you
clinical evidence to support my views, but I have heard it spoken of
as an ACT of Lunacy, A last desperate act and even on a site, it was
spoken of as attempted suicide. Please, do not even think about it,
or more precisely, do everything you can to discourage yout partner
form even researching it. No doubt, Robert may dissagree totally
with me, we will still love each other as Brothers in Pain and
Pancreatitis, but I will never speak in favour of attempting this.
To be honest, I don't even like discussing this, but we are all of us
mature consenting adults so we should openly discuss every sublect
that is of interest to any member of our great Family, good taste and
the law permitting. I would never even pass on the urls of the few
(very few)sites I researched, if someone is determined, then perhaps
it's a useful exercise for them to have to find their answers the
hard way.
Let no one reading this even consider that I am moralising over this,
on the other hand, if I am, then so be it. I have the right to voice
my opinion, as has every other member, and in this instance, I am
happy to speak in this manner because my motivations are based
totally around the fact that I care, I care as much for all of you as
I do for my "other family".
Vicky, there are other ways to deal with the future than racing
dangerously towards it and maybe risk a fatal collision.
I have an old saying I got in my childhood and it has served me well;
"What's for you, won't pass you by"
Leave the burnout in the hands of God, please
Pat

Hey there bunny girl!!!
Boy I have been worried about you, i posted some to you but never got
a reply.
then i saw post from you talking about food again, do you never stop?
When you are fasting, for tests or forced fasting because of pain,
never ever think or talk about food, it will only make thing worse.
You have had a bad time of it since your ERCP and routing by the
needle doctor guy, and even worse service, if it even deserves that
title, form your PCP.
Once again, as soon as you pay attention to little old me, and get
your cellulite hiney to his office at least you gert to see him.
Not that long ago since you went and spoke to him about your toilet
issuse and he addressed them, and also gave you narcotic type meds,
despite his doom and gloom poster.
Now Barbara, your first project for when you are finally recovered,
if you ever are of course, is to go have a walk around an area that
is convenient for you and FIND YOURSELF ANOTHER DOCTOR!
Enough, Enough, rid yourself of the curse of Mr Negativity and aligne
yourself with Polly Positivity, and you can achieve anything,
anything.
Or, you could go online and visit one of the LINUX Boards and ask
them to help locate a new doctor for you.
All the Linux junkies that I know say that Linux is so good it can
outdo anything the world can throw at it, FINE! Lets see it help you
to find a new PCP, the one you have is not worth the effort for you,
he should be prosecuted for leaving you for so long in the awful
state you were in.
Has it ever occured to you that perhaps the reason he does not want
to prescribe strong drugs is because he is keeping them all for
himself!
Regardless, I am absolutely delighted to see you back and in fine
funny form too.
While I have your attention, Happy Easter Honey Bunny
Pat

Carrie, was there ever a better acronym for anything than CRAP,
associated with pancreatitis, a classic!!!!
Please, try to relax and not stress yourself.
Love and hugs
Pat

I may have to replace this keyboard. Being that it is 6 yrs old. Sorry
again.

I hope you get some resolution soon. Regarding wanting ones life back.
Oh, how I would like that. Yet, I have resigned myself to be on
disability, because I now I could no longer do what I did before. I
really miss that last job. I worked as a contractor for Intel. I work
as a product validation engineer. It was fun, working with the latest
CPU's and hardware. Let alone Linux and Netware.
Hope things get better for you really soon. Or at least some
resolution and clarity of what is going on.
Walt

Since I had been leaving messages for the doctor, I decided I would
leave a message saying that I was taking a taxi to their office today,
after lunch and if they had a problem with that to call me before noon
to tell me not to come.
They didn't call so I hopped in a taxi. When I got in to see him I
told him that I had been calling for an appointment since before my
procedure on Jan 6. His office had called me to tell me my blood test
results were in so I called them before my procedure to get the
results. Thus began the trail of phone messages to his office. He did
tell me that if I should ever again have trouble reaching him at his
office to just come down and he will see me.
I asked him if he had received the report from the GI (needle knife
sadist) in London or if he had received the note advising that I be
tested for H. pylori. Nope, he hadn't. I then described to him the
horror I endured and how I had stopped breathing 3 times during the
procedure. I told him how sick I have been (fever, nausea, vomitting,
diarreaha, pain, chest pain, not able to eat without pain etc.).
I asked him what am I supposed to do to manage this and he told me to
basically not eat any fat - duh? Shoot, I'd be happy if I could eat
ANYTHING besides popsicles. He ordered more blood tests for lipase and
H. pylori so I asked him for the results of the tests I had done just
before the holidays. He couldn't find them in my file so he asked his
secretary if she could find them. He had some test results from last
year that indicated that my glucose was elevated but he didn't have
the most recent tests. I told them that I had the tests done at the
main lab downtown. BTW, all the labs in town are operated by the same
company.
She looked over the office and couldn't find them. She then came back
to the examining room and told him that she had called the main lab
but they had no record of me in their system. The doc gave me the
order form for the new blood tests and I asked him if I shouldn't have
the other tests (tryglycerides, glucose etc.) done again since they
lost my results. He said that wasn't necessary and sent me on my way
with a perscription for Pariet (rabeprazole sodium). He said this drug
would help with the pain I feel because the procedure may have caused
some stomach inflamation.
So I went round the corner and had my blood work done and while they
were entering me into the computer I asked them if they had my name
anywhere in the system. Well, don't ya know my name just popped up on
that computer screen with the test results of the missing blood work.
Elementary my dear. Aren't computers amazing? Gee, someday they might
even put a man on the moon!
So after getting poked, I dropped off my script at the pharmacy (thank
heavens these places are all in the same building) I returned to the
doctor's office and told them that my blood work had been found ('twas
easy once we put Scotland Yard on the case) but they would have to
call the lab for the results. I said I'd be back in a few minutes to
see if the doc wanted to see me again. I went back to the pharmacy,
picked up my script and some gravol since I had run out then went back
to the doctor's office.
I then asked if I should wait. The secretary said that they would call
me. I said if they were going to call me just to say I should come
back for the test results that I'd rather wait. She then said that
they would call me and tell me the test results. So I came home.
Now that I'm here, I looked up the Pariet stuff he gave me and find
that it is a proton pump inhibitor. I found something from the FDA
about it and under adverse effects it says:
Digestive System: diarrhea, nausea, abdominal pain, vomiting,
dyspepsia, flatulence, constipation, dry mouth, eructation,
gastroenteritis, rectal hemorrhage, melena, anorexia, cholelithiasis,
mouth ulceration, stomatitis, dysphagia, gingivitis, cholecystitis,
increased appetite, abnormal stools, colitis, esophagitis, glossitis,
pancreatitis, proctitis. Rare: bloody diarrhea, cholangitis,
duodenitis, gastrointestinal hemorrhage, hepatic encephalopathy,
hepatitis, hepatoma, liver fatty deposit, salivary gland enlargement,
thirst.
Here's the link http://www.fda.gov/cder/foi/label/1999/20973lbl.pdf
I'm at my witt's end and really need to get better fast so I can get
back to work - I was hoping I could do that by Monday - sigh. I
getting awfully frustrated here. I know that this is a chronic
condition but surely there must be some way I can manage it so that
I'm not so sick all the time. There's just GOT to be an answer!
I hate to be a whiner but I'm SO angry! I just want my life back! Is
that too much to ask? Well, I would like to win the lotto too but I
won't push it - my life back will do just fine. Gotta keep smiling or
I'll end up in a rubber room, drooling and singing show tunes.
Barbara.

Today I recieved my snail and Jan's mail was there. That mail must
have been smoking out of Florida!!!! I have their photo finally up
and if you do not mind, the Florida Sunshine is all mine to keep!!!!
I will return your photo first thing in the morning, Jan. Thank you,
it was the bright spot in my day. If anyone else is needing help
doing this you may contact me at robert@... and
we will do uor best to serve you. Thanks again Jan and may the candle
burn bright!!!
God Bless,
Robert
robert@...
A Founding Member,

Thanks Pat.
As far as working from home, I don't think I can do that and collect
disability. It is a little amount of money, but at least it will buy
the groceries and maybe pay the gas bill.
I went back to the ER this morning in horrible pain. My amalyse were
fine. The doctor said with Chronic Reocurrent Acute Pancreatitis
(CRAP), the amalyse may not go up. He said with the amalyse and
other blood levels being normal, he could not admit me. He didn't
diagnose me as having chronic pancreatitis, as my physician has not
either. On my slip to not return to work until May 1st, my family
physician did write due to chronic pancreatitis. The ER doc gave me
some phenergan and demerol and sent me on my way. I finally got some
sleep at home and am feeling a little better. The doctor said if I
needed another shot of demerol to come back to the ER. He said just
to keep taking the pain pills and try to make it for another week and
a halp until I go to Strong in Rochester, NY.
Wishing you well!
Love,
Carrie

I will post them soon. I promise!
Lisa
Simi Valley, CA

Oh plases DO post your Zoo...and make sure piggy is VERY
prominent...we MUST give Pat another aplopetic (sp?) fit !!! :):)
I am SOOOO evil sometimes !!! Stirrer of the pot !!!! Jeannine :)

Pat...I am fortunate enough to belong to one other site somewhat like
this...it's just that it's a much smaller group and we have become
tight and very close friend. Ihave met half the people in person and
will be meeting at least one other one this April I hope! and I hope
two others will come and join us....
TPP IS unique in that it's fairly large and yet everyone seems to
genuinely care for one another...we certainly understand one
another's pain !
I have to take issue with you saying even the love shows through when
talking about rats...from LISA maybe but not from YOU dear friend !
You are fairly jumping through the screen at her ! :):):) But you
have given me so many laughs as has Lisa...the lighting off of
firecrackers attached to your hiney was a wonderful visual that had
me laughing so hard I almost choked !!!!! But I survived to live
another day and tell you guys how much fun this little spat has
been !!!!!
Hugs to all ! Jeannine

Don't know if you guys even know about this but I have been waiting
for what feels like years for this weekend to get here as I am going
on a yoga retreat !!!! Here's a letter I sent to a friend which I
have copy/pasted in case it "reads funny"!!

Hi again,
I'm sorry to bother you again but I was just wondering if I could
pick your brains. Could you please tell me a bit more about a
controlled burn out. I thought the only way the pancreas burnout
was though more attacks. My partner has been told he only has 2cm
of his left and the doc think that it will burnout within 2 years.
Once it is burnt out does the pain go away and does the diabetes get
worse, at the moment he only has to inject once a day a backgound
insulin, and touch wood (I'm touching my head at the mo) with diet
as well he seems to manage it well.
I hope you are feeling better today, but if you are not please
don't worry about answering this question.
Take care
Vicky (UK)

Brother.......... you can do this toooo, you know. Anyone can......... if
you believe in God. Just concentrate on the person ( one at a time) and
finish it with saying......... " all things are possible with God"
You'll feel yourself "flush" with warmth and content that now
starts the protection and guidance along with prayer that is needed.
Visualize the bright , white, fluffy cloud surrounding the entire body of
the person. The light will alost be blinding............ but beautiful.
ending it with Amen......... is a nice closing.. Together.......... you
and me...... ill make a difference............... You gotta believe!
always!...........iin your heart God is your premise. Have a great day!
i'm going to. love, jan xoox

Hi buddy........... it's time for you, YOU to slow down and rest your pan.
Try drinking some hot tea a couuple times a day. Green tea is good
for yooou as it has lots of antioxients in it! t night........... the
sweet peppermmmmmmint sleepppppytime tea is soothing aaand ca help
you fall asleep. it helps me alot and hopefully~~~~ it will help
you, brother.. Looks like candle is due, here.......... so enough
said and wwhen i'm through heeere............ one will be lit.. with
prayer for you. What's the latest with Maura these
days????/////////shee seems to be getting bryyrrrtt!
YEAAAAAHH!!!!!!!!!!!!!!!!!!!!! I'm finally getting the christnas stuff
put awa y all thanks to Tom's helpllll !!! More window washing is in
store for me, ttoday. What a rreeeeeeewwwaard, Maura! We'll
be talking to you soon, today, love, ajn xox

Jan, Jan, & Tom Too.
At last, I finally got through to you, you are going to have your
photo up here for all of us to admire.
Tell us, did you go and get all gussied up for this picture?
Will we be able to see your Froggie Throne!!!
Thank you, for caring enough to share your wonderful Tom with us too.
I cannot wait to see you at last.
Hey, I very nearlly said I can''t wait to see you in the flesh!!
That would probablly have had us closed down!!!!
Love Yah loads, and thinking of you, you were a little quiet for a
while, are you certain your all ok? We like to know iif things are
not quite right.
God Bless you and Tom
Pat
Bunny Meister

Hi,
Still unable to sleep,now 7am, most people at home are either up or
about to be.
I left my laptop on, never did that before, that's how tired I am,
must watch that.
You know, it never fails to humble me when I click on the TPP board
and there is always a thoughtful word for me from someone.
And the same concern for each other almost lifts off of the screen.
Even a post about RATS has kindness and caring at the heart of it's
message.
TPP has many qualities, and it is great to hear Robert speak about it
with such passion too. BTW, Robert, thank you too, for your ongoing
work on the site and your unseen efforts behind the scenes, and for
taking the time to think kindly of me in the midst of your own
diabetic hell.
A thought just occured to me, how many sites dedicated to such a
focused disease as Pancreatitis has members talking to each other
24/7, and not just about their illness and all their worries and
stressors, but as all this is trauma and drama is going on people are
expressing their undying love and devotion to RATS!
I knew when I first came here, I would end up in a place for the
bewildered, and I did end up in it, here we all are in the very
centre of it. Rats, cats, fish, budgies and all!
Great, isn't it.
Pat

Dear Pat,
Got you still covered with prayer for our church. I pray that this is
nothing serious. I want to try Jan's candle idea out for you as well.
It works!!!
Get better very soon!!!
Robert
A Founding Member

Dear Jan,
I would be happy to do this for you. My mail gets here between 4-5 pm
each day. Scan you right up and put you on the site within minutes,
girl!!! I hope the envelope is large because I need all the Florida
sun I can get!!! I have not got all my decorations down either. It
has been trying on me with this brittle diabetes. It has been just as
cold and they belong in my shop, and I have not been walking very
good to top this. We just got to take it day by day.
Thanks for being here for me,
Robert
A Founding Member,

Robert,
We really appreciate this sight and thank you for your commitment to it. I
think we all understand the reason for post being re-sent but when it happened
it kind of freaked me out and I was just wondering what was going on. The night
before I had accidentally picked up a bug from an other website I visited and I
automatically thought it was my computer freaking out on me again. I am sorry
if my questioning the double posting caused you any grief, if so it was
unintentional. Maybe though if this problem happens again, and the only to get
the post back is to re-post them, maybe you can let us know what you are having
to do so we can change our preference to not receive individual e-mails that
day. Than when all is well again we can re-set our preference to individual
e-mails. Just a thought. My husband shares this e-mail with me at home and he
really freaks out when I let it get too many unread e-mails because if his work
is trying to contact him it takes forever to get through my stuff. I need to
set-up a diff. account for him on this computer but I am just too lazy, and this
server is a pain in the but to do that with!
Thanks again for your dedication, and remember to watch those sugars, your
health needs to come first!
Lisa
Simi Valley, CA

Jeannine,
Yes we love our animals, too. We have 8 fish, one guinea pig and two
cockateils. The birds love the piggy too. We have the cages next to each other
and the birds copy the noises the piggy makes. It is funny because the piggy is
supposed to be afraid of the birds but ours has been with the birds since he was
a baby and so he doesn't think of them as a threat. I think I might have to
post a picture of our zoo just for Pat's sake. I wish we could have a dog here,
but they require a $1,000.00 deposit for a dog or cat so we can't do that! As
it is we pay $1765.00 a month for rent ( and it is only a 3 bedroom apt!) so our
limited budget won't stretch much farther. Hubby has a good job with Washington
Mutual but I don't get a whole lot on SSDI. By the way the rent we pay is cheap
for this area.
God bless those of us that take care of Gods little creatures!
Lisa
Simi Valley, CA

Pat,
Please rest and get better soon. Have you phoned the doctor? Does the doctor
know the lung thing is not any better?
Please keep us up to date on how you are doing ok?
Lisa
Simi Valley, CA

This site was founded on the very idea of free speach. A lot of you
know our history. We have stuck together through thick and thin. We
are growing now and will continue to grow as a family. The ground
work is being laid for the future. We are also having health problems
ourselves. That is what you get with a group of people who have
pancreatitis to whatever degree. We are looking for answers to get
better each and everyone of us, that includes The Pancreatitis Place.
I have plans on The Pancreatitis Place to be here years after I have
left this earth. I want everything to be left intact. Our family can
come here and find information if this disease spreads to them, and
it can. They can come here and read their own relatives words.
Whether it be son, daughter, wife, husband, mom, dad, grandkids,
brothers, sisters, friends or 50+ year generations. This site is
going to be a goldmine after we have met our maker. Imagine, finding
your great great great grandparents here. Joy Joy Joy, a GOLDMIND. I
intend for that to happen. It is like a special savings just for
them. I want you to let them know where to find you, everlasting
here. We have set new training in order for operation on this site
and included better back up. We will try our best to keep every word
on this site. They are precious to the new generations. That is my
commitment, that our posts live on.
Now as far as stopping this delete, this time was impossible. It took
less than 15 minutes, I got less than a half minute warning. I was
then and still now having problems with high sugar problems. But
within minutes a meeting was called and the posts were located in
digests. A two part plan was put in place. The old posts can not be
put back in their proper place either, just somewhere close. You guys
would flip out if I posted another 1300+ posts in a day!!! I would
have you bouncing on your e-mail accounts in one day on old posts.
This is an high-tech problem with an old fashion solution. Just like
pancreatitis is old fashion problem but needs an high-tech solution.
God willing we will have both. Our future depends on it!!!!
May God Bless Us All,
Robert
A Founding Member

Hey Gang,
I'm likely to go "down" for a day or so, this lung infection is
breaking me up, I feel really the "pits".
Geez, I am just wiped out, weak as a kitten, and getting worse I
think.
Add the liquid to go with the scan, the lethal "toilet issues" that
arise following that.
CORRECTION
affected by gravity and made to FALL rather than ARISE.
You get the message, I'm on the move and at an alarming rate too.
My abdomen is so painful I could well be in a "flare up" of that old
friend of ours.
Pat

Jeannine,
Cheekky thing!!
;¬))
It was a simple error, just some housekeeping that went slightly
wrong.
It would be really cool if we could just leave this issue to fade
into distant memory.
Please, lets not mention it again, the person involved is distraught
as it is, so silence is probably the best medicine.
Please,
Trust me,
I'm Oirish!
Pat

Carrie,
So sorry to hear your ill again, and you have to possiblly have such
major surgery, at least, it seems pretty radical and severe to my
untrained mind!
On an up note, thank God you will not have to endure another ERCP,
I've lost count of the number you have had.
I will be interested to hear how your MRCP goes, I am booked for one
in March. I went to have one, middle of last year, but my overwight
state meant I did not fit into the MRI scanner. They do have a
maximum shoulder girth to the aperure.
I am booked to a different facility this time but I phoned and
explained my last fiasco and they simply said, "If you did not fit in
XX's MRI scanner, then you will not fit this one either". Great,
isn't it!!
I can understand your concerns about loss of pay, but you have to
take care of yourself. Could you do some work from home, to kep some
income going, and to reduce the boredom, that's a prime stressor.
Good luck, and take care of yourself, please.
Pat

Hi, i had not seen Chrissy on line for a few day`s so was getting
worried about her,but i got mail from her today, she did say that
you were also thinking of total removal, of our old panc. Did you
put it of just because it seemed to calm down???? or like me, know
it`s coming but not ready for it. This time i go into hospital i
want to know everything i can beforehand. As i really did not know
anything, and do not want to get caught offguard. It`s a big step,
to big to go into blind. I hope your panc calm`s down, you`ve
probaly been over doing it, as we all do. Best wish`s, Jac.xox

And it is EXPENSIVE! Ours is $1200 a month, which is over 1/3 of our
disability benefit.
Eileen

Pat Writes:
If someone applied for a job and did not tell potential employer about their
illness,if they got the job, and their chronic illness kicked in, lets take a
Panc disease patient as an examplle, what would the consequences be for the
employee? For examplle, if the employer paid, or subsidised health insurance ?
Dear {{{{{{{{{{{{{{{{{Pat}}}}}}}}}}}}}}}}
In most cases an empoyer generally will pay about 75% of health care insurance
premiums for their employees and employees pay co-pays and deductables. If an
employee is hired and a chronic illness effects his/her ability to meet the
requirements of the position, generally speaking the employee is let go and
offered COBRA insurance. A continuation of benefits in which the former
employee pays all costs.
ReeAnn M. Betts-Morris - VA
CoOwner, ThePancreatitisPlace
434-409-7162

Eileen,
Thank you. If you came to live at my house you would be loved!
Lisa
Simi Valley, CA

Eileen Writes:
I have some recipes that are actually pretty good - where do we post
them?
Dear {{{{{{{{{{{{{Eileen}}}}}}}}}}}}}}
If you want to send your recipes to either Denise or myself, we will get them
posted for you. Looking forward to seeing them and trying them out!!
ReeAnn M. Betts-Morris - VA
CoOwner, ThePancreatitisPlace
434-409-7162

Chiggy Writes:
Hi everyone, I am confused to what happened to the board. It was there last
night and it went away. I hope it is repaired soon. The doctor put me on clear
liquid diet yesterday. He is going to take IVs out tomorrow. I might be going
home then. I want to go home with my family. Home. Christina and my wife say hi.
They are here now. Keep us in prayer. Chiggy
Dear {{{{{{{{{{{{{{{Chiggy}}}}}}}}}}}}}}}}
That is wonderful news!!!!!!!!!!! So glad to hear you are on the mend. And to
be going home soon... YIPPEE!!!
Rest assured that we are working diligently to correct problems with the posts
and all should be in order by this weekend.
ReeAnn M. Betts-Morris - VA
CoOwner, ThePancreatitisPlace
434-409-7162

Eileen Wrote:
And me? I'm just TIRED.
Dear {{{{{{{{{{{{{{{{Eileen}}}}}}}}}}}}}}}}}}
You are such a trooper. Please remember to take a few minutes for yourself!!
It is very important that you take care of you while you are busy taking care of
evryone else. Caregivers are the most important people in our lives, more so
than any medical professional. If you (or any caregiver) fall down from over
doing it, who will be there to take care of us?????
ReeAnn M. Betts-Morris - VA
CoOwner, ThePancreatitisPlace
434-409-7162

Pat Writes:
Do you, or anyone radinng this have any experience of this liquid?
It has a sort of aniseed type taste to it. YUKKIE YUKKIE YUK!
Dear {{{{{{{{{{{{{{[Pat}}}}}}}}}}}}}}
Yes it is horrid tasting. I had had a couple of different *cocktails* used to
prepare us for a CT-scan and none of them are any good. You would thin they
could at least do something better about the taste...........
ReeAnn M. Betts-Morris - VA
CoOwner, ThePancreatitisPlace
434-409-7162

Hello {{{{{{{{{{{{{{{{{Everyone}}}}}}}}}}}}}}}}}}}}}
Thank you for baring with us as we try to correct this problem pf replacing
posts that were accidently deleted. The remaining missing posts will be put
into files and stored in the files section on TPP. Gary and I will be working
on this task this coming weekend.
Your patience and understanding is surely appreciated as we correct this
problem. We are also putting in additional safe guards so this problem with not
reoccur. As of today, posts shold be back to normal and you will see the old
posts on the files section this weekend.
For those of you who responded to my request about digests, I most sincerely
thank you and appreciate all the help!!!
ReeAnn M. Betts-Morris - VA
CoOwner, ThePancreatitisPlace
434-409-7162

My sister wrote this article. She is associate editor for a small
newspaper in Connecticut.
Eileen

Dear {{{{{{{{{{{{{{{{Jeannine}}}}}}}}}}}}}}
Yes it is exactly why we are Marching in DC. It is unreal the changes in pain
treatment since 2000 when Jcaho's primary focus was adequately treating pain.
If anyone is interested in attending this March, please let either Jeannine or
myself know. I would like to have a bunch of us from TPP in our smaller group
participating in the March. If you can anyway make it into DC for this March,
please do so. We can help with hotel reservations and any other questions you
might have.
Your presence WILL MAKE A DIFFERENCE!! Stand up and be counted in this most
needed cause.
ReeAnn M. Betts-Morris - VA
CoOwner, ThePancreatitisPlace
434-409-7162

Jeannie Wrote:
How does an entire medical center thank the spouses, children and
friends of patients who tend to their medical and emotional needs day-
to-day? The Philadelphia VA Medical Center did it on CARE (Geriatric
Caregivers' Appreciation Recognition and Education) Day. Focused
entirely on the caregiver's, CARE Day was a chance for caregivers to
relax, and learn new techniques to make their jobs easier. Philly
VAMC staff taught their caregivers how to triage emergencies at home,
safely transfer a patient, and recognize and manage psychiatric
problems. Caregivers also learned techniques to better take care of
themselves, such as Tai Chi and meditation. CARE Day recognized those who
provide care to loved ones 24-7 and recognized them as an
important part of the VA health care team.
Dear {{{{{{{{{{{{{{{{{[[[Jeannine}}}}}}}}}}}}}}}}}}}}}
What a wonderful way to recognize the most important people in our lives!!
Thanks so very much for sharing that with us!!!

I went to the ER Monday night in pain. My amalyse was normal. They
gave me a shot of demerol (for pain) and phenergan (for nausea)
through my IV. The nurse there was very kind. I told her I had
clots in my arms from my last stay in the hospital because the pain
medication was so rough on my veins. She mixed my meds with saline
and slowly injected it. She spent 1/2 hour giving me my meds. She
deserves medal for kindness.
My regular doctor is sending me to Dr. Sax at Strong Memorial
Hospital in Rochester, NY on the 26th. My doctor thinks I may have
chronic pancreatitis. I have an MRCP next Tuesday. If the doctor
can't do anything for me in Rochester, then I go to see Dr. Stuart
Sherman in Indianapolis.
My doctor said the ducts going from pancreas may be blocked. The MRCP
will hopefully show this. He said no more ERCPs for me as I have had
two and both times pancreatitis following the procedures. If my
ducts are blocked he said I may have to have the surgery where they
cut my pancreas from head to tail and attach it to my small
intestines. I believe this is called the Puestow Procedure.
My doctor wrote me a note to be off work until May 1st, anticipating
another surgery. Hopefully I won't have to have one and will be able
to return to work sooner. I get so bored at home. Plus I can't
afford it. Oh well.
I will keep you all informed.
Carrie

Oh my Eileen, I simply love venison! My brother in law hunts so when
we visit we also get some venison to take home. He also fishes and one
of my best memories was going downrigging for salmon on Georgian Bay
(I too like to fish). Here in Canada, you can buy game meats (deer,
bear, buffalo etc.) from some butchers - not all but some do carry
them. My neighbour across the alley bought some and filled his
freezer! We've got one restaurant here in town where you can order
burgers made with boar, ostrish, elk, buffalo and a whole bunch of
other game meats. When I lived up north on the James Bay frontier,
(one day I'll tell you the story about the day I almost became a
smorgosboard for a wild bear) game meats and foul were as common as
hamburger is.
Sadly though, since being ill, I mostly have meatless meals.
Bye for now, Barbara.

Hi Chiggy........ i just love your name. With a name like that..... i bet
you are a true pleassure to be around........ full of laughter and life! I
continue ..... ( day and night) to have candles burning in your memory and
your families. The candles will bring you warmth and a reminder to me to
take time throughout the day and pray for you. Also....... i have one lit
for Robert......... who seeems to be having trouble with his sugar and
getting it under control. That's great news....... no I.V. tomorrow! and
you might get to go home??????????? YIPPEE! You'll heal better at
home........ where love surrounds you. Keep taking care of
yourself......... listen to the docs and the people who love you. and I
believe you'll be on your feet in no time at all!!! God bless you
all........ love, jan xox

Finally......... i've had the chance to get a letter off to you by means of
snail mail! I sent you a picture of Ttom and me . The reason being is some
people have requested our picture in th e folder and i haven't the sightest
idea how to do that.! I was hoping............ if you don't mind ,
Robert......... could you please put that picture on the folder for
us, Please? I have adsked TOm many times to do it........ and he's either
too busy or he's sleeping. He's been working extra lately and our time
together has been few and far between. We still haven't put up the
Christmas decoractgions, yet! If you can't........ i'll understand and i
sent you a self addressed envelope to sent the picture back to us... Pleas
don't feel you HAVE to do this......... but it's the only way it can be
done............ for a while anyway. Enclosed in the envelope is some
Florida sunshine....... Jan's style........... he! he! just to let you know
i'm thinking of you and appreciate all you do for all of us, brother. Again
, this am i have thoughts concentrating on you and Chiggy and his family
and of course Maura. All are lite beautifully around the house. ( candles
and a prayer) i'll talk to you soon. thaanks in advance...... love, jan
xox

Mark got sick just two months after he started his new job. It was out
of the blue - we had no indications at all. I hope that they don't
think that he was hiding something. Not that it makes a difference -
that job is long gone.
Eileen

Hey, I totally understand. I had one rabbit who hopped around with a
cast on his leg, one who saw a vet chiropractor, and another who had a
stroke and laid on his back and had to be fed with an eyedropper. If I
die and come back as a bunny, I want to go to LISA'S house and not be
stuck in a lab with wires in my head!!!
Eileen

Hi Pat,
Well, I see you have found something else to complain about. Our relationship is
destined to be rocky, I'm afraid, due to your incessant whining. :-)
Let's talk about your assumption. If the disease kicked-in, there would be no
insurance issue for two reasons: 1.) I am not aware of any company that pays
COMPLETELY for employees' insurance premiums; There is always some portion that
the employee has to pay: and, 2.) There are lots of ways to explain it. For
example, the patient could explain that the disease had been dormant and
suddenly reappeared. Or, that he (she) didn't think it would be an issue. Or,
that the employee thought that they would be able to "handle" it without loss of
work time.
I actually had this happen to me at my last place of employment. I was
hospitalized for 5 days with a major attack. I told my boss that it usually
wasn't an issue and this attack was an abberation. My explanation was truthful.
It usually is under control with my medications. There were no repercussions.
Jerry/NC
***************************************************************

This is a very good point, Lisa. I'm glad you brought it up!
Jerry/NC
****************************************

Just a reminder!
If you a friend, or loved one need prayer, please go to
http://www.theprayerfactory.com . It's free, easy, and non-denominational. Your
intentions will be prayed for immediately.
Thanks,
Jerry/NC

Please be aware that I am not a doctor and I am not medically
qualified. Any information I provide is either my personal opinion or
based on my personal experience. No medical decisions should be taken
without consultation with your doctor or doctors.
Hello Lars,
My name is Patrick, but please call me Pat I am the International
Moderator for ThePancreatitisPlace, and I live in Ireland.
Naturally, I am most distressed to read of your wife's unfortunate
illness and I hope that we, as a group may be of some assistance to
both of you.
I happen to agree with you about the likely cause of your wife's
illness as I believe that polypharmacy, the prescribing of multiple
medications over a prolonged period has at least contributed to my
own Pancreatitis, if indeed it has not been the primary cause.
Lars, at about the beginning of December I began to use a transdermal
patch as my primary pain management. Like your wife, I was prescribed
the brand Duragesic, and like your wife, I too had a very bad time
with nausea. Acting on my doctor's advice, I persevered with the
treatment, the freedom from oral delivery of my pain medication and
the effectiveness of the Duragesic patches were incentive enough for
me.
Unfortunately, despite every effort by my team, and another round of
rapidly changing anti nausea medications I felt I had no option but
to return to the old reliable delivery method, orally.
On my way to my family doctors to decide what drugs to return to, I
called to my regular pharmacy to drop of the unused drugs and
Duragesic patches for safe disposal.
My pharmacist suggested that I might like to try an alternative
patch, and suggested I mention
the brand TRANSTEC to my doctor.
My doctor's initial reaction was not too enthusiastic, but I
persevered. I was convinced that the reduction in dosage of the drug,
allied with the reduction of simple "wear and tear" caused by
digesting the drugs, had to be the better way to go. And I was
equally sure that my liver would also thank me!
The active ingredient of Transtec is BUPRENORPHIN, and I have used it
successfully up to this date. I do experience "flare ups" or
breakthrough pain and I supplement the Transtec patch with the use of
TEMGESIC, a sublingual pill with the same active ingredient,
Buprenorphine.
I will not deny that nausea is an ongoing difficulty, but so far, I
have managed to survive using VALOID, which is another brand name
with the active ingredient, Cyclizine, and as your wife is already
using this she would have no difficulties with it
I have in the past described my nausea as being terminal nausea it
was so awful, and I still experience it at that intensity but I can
manage to live with it using just the Valoid.
It is very good not to hear one of the most common difficulties
associated with the use of the Transdermal patches, an allergic
reaction to the adhesive used and in very many cases, an equally
severe reaction to the "carrier" of the drug itself.
It would be wonderful if a change of drug was effective in reducing
your wife's high levels of nausea. In fairness to her, this really
excessive feeling of nausea would appear to be well documented
throughout the world. I shudder when I recall my experience when I
was trying to get used to the Duragesic patches.
It is my intention to place your original question, plus my response,
on the general TPP Board.
(Obviously, I will only publish your name and general location, we
pride ourselves on the confidentiality of our member's personal
information.)
This will ensure that your enquiry will receive the maximum exposure.
We have members throughout the world, from your own country, Sweden
to Mexico and over to Australia.
I am confident that our TPP family will welcome you and offer you
their advice and support.
Please feel free to join in any of the existing threads or start a
new thread of your own.
Ask as many questions as you wish, and basically on any subject you
wish. We have a large number of caregivers on the Board and you might
like to exchange views with some of them, given your own enormous
contribution in this valuable role. There are no "silly" questions
and there are no embarrassing questions either. What may seem
embarrassing to others has most likely been posted here already.
I hope you enjoy your time with us, and I sincerely hope you will
share some of your experiences and those of your wife, as you have
dealt with the medical system in your country.
One of the most contentious issues for the board members is the
quality of service that patients experience. For myself, I would
certainly love to hear of the health system in Sweden to see how it
compares with my own here in Ireland.
Kindest regards,
Pat
International Moderator.

Hi Jerry,
Listen, the other day you were moanin' that you were being ignored.
Now you get some gratitude and response and you practically tell me
to go ......
Well, you didn't go that far, I suppose.
I think your correct, people won't tell.
And I don't think I would either, given the situation you guys and
gals face, your medical costs are mind boggling!
Point of information please.
If someone applied for a job and did not tell potential employer
about their illness,if they got the job, and their chronic illness
kicked in, lets take a Panc disease patient as an examplle, what
would the consequences be for the employee?
For examplle, if the employer paid, or subsidised health insurance ?
Pat

This is the content of an email from a new mwmber in Sweden.
His name is Lars, and he is the caregiver to hos wife Else.
I have already replied to his email but I will post my replly to keep
the thread complete.
I trust that all of the Family will welcome our 2 newest additions
and offer whatever support and right now INFORMATION for them
Regards,
Pat
My name is Lars, and I live in Sweden,
My wife Else is 67 years old, and has accrued a number of illnesses.
Most of then are kept at bay with different medication, and her main
problems now are scoliosis and pancreatitis.
There is little doubt that the latter is induced by the literally
thousands of pills she has been taking, so I am deeply concerned with
side
effects when doctors begin talking about "trying something else"!
At present, she is switching from hydromorphone (in s.c. pump)to
Duragesic patches, which is why I try to find as much information on
the net
as possible. While the pain relief seems to be adequate, she finds
the
nausea almost unbearable at times.
We are aware that it may take some time for her body to adjust, but
so
far none of the following appear to be very efficient:
still
get it from Denmark,
least
the suppositories (pills may interfere with other medication),
the
nausea?

Pat,
Sorry no can do. Like I said he is the family dog. I know GOD is in heaven
looking down on me and saying "what a wonderful person to care for all of my
creatures great and small" If you keep this up you will come back in your next
life as a hamster and you will belong to a little boy named Billy, that likes to
torture you by tying little firecrackers to your hinny and seeing how far he
launch you. Remember, KARMA my friend!
Lisa

A friend sent this to me, so I thought I'd pass it along to all the guys on this
list. Take it gents and let everyone know you are real men!
Jerry/NC
**************************************************

Tain't that way in the USA Pat. We normally do not have physicals before
employment, but most employers now require a drug screen for heroin, cocaine,
and the like. The pain drugs we take normally don't show up. Most likely, if
someone told an employer they were chronically ill, they wouldn't get hired.
Period. So will most people tell here in the USA? I think not.
Jerry/NC
PS - I didn't invite comment on the article. I just gave my own. However, you
comment on most anything anyway, so why am I even writing this? :-)

Hi Everyone,
Recently, I posted for comments about the "Flush" and sweating that I
experienced at totally unpredictable times. I had quiet a few replies
but not as many as I expected. Perhaps this iis down to the fact that
I addressed my question to the men, primarily.
It is 3:30 am here, as usual, I cannot sleep because the pin is so
very bad and I experience increased discomfort if I turn on my right
side. It feels as though somethinng inflamed or enlarged is pushed
towards the other side of my body and upwards into my chest, very
uncomfortable so I tend to then lie forward as well.
Not much better if I turn on my left side, exceppt then I feel like I
pressing down on my right side.
Anyway, I decided to take another "breakthrough" pain reliever.
I use a patch of BUPRENORPHINE for long-term control and a sublingual
tablet of the same drug for breakthrough pain.
Within a very few minutes of dissolving the pill under my tongue,
I noticed the identical symptoms that I have described as
my "flush". It was identical, down to the sweat standing out on my
face and neck, then all over my body.
Now I have to consider is it occuring whenever my patch "releases"
into me? Or, is my understandinng oof how the patch actually works
totally inncorrect? Is the drug from my patch constantly "leeching"
the drug, 24/7?
More mystery.
Pat

Thanks for asking! His name is Mark. I haven't posted in a while
myself...too busy juggling.
Today was a disappointment. Our hospital recommended a facility that
did pain control, rehab, counseling, all in one place, supervised by one
team. Our insurance naturally didn't cover that facility, but our nurse
case manager set up an appointment for us at another hospital, that was
supposed to have a similar program. We sat for three hours and finally
saw the neurologist, who offered to continue Mark's fentanyl patches
indefinitely, but had no such program - he said that he would recommend
Mark for physical therapy, but that's not the same as a comprehensive
program. I told the nurse case manager, and she is going to try to get
the other facility approved.
I know that just being pain-free in itself is more than a lot of people
would ever get, but Mark is only 44 (seven years younger than I am!),
and we are trying to figure out if he will ever be able to go back to
work again and live a "normal" life, or if this is as good as it's going
to get. He is basically bedridden (sleeps on a hospital bed in our
family room) and uses a wheelchair for anything more than the slightest
bit of walking. We want to try everything that we can before we just
sit back and say, okay, he's disabled. It's really hard for me, because
we have two young daughters, and he can't drive or do anything. We also
will have to sell our house - we are living on savings and my part-time
job right now. I can't get a full-time job with benefits until he is at
a point where I don't have to take him to a different doctor every week.
My 12-year-old goes for an ortho consult on Friday. They are going to
do surgery to even out her legs - she had polio (both of my kids are
adopted from Russia) and the legs are different lengths. She will be in
a cast for about six weeks - I don't know how I will fit all of these
disabled people in my car! They might put her on some kind of growth
hormone, because she is extremely small for her age.
To top it off, my 14-year-old is still having behavioral problems at
school and problems with grades and BOYS.
And me? I'm just TIRED.
Eileen

Lisa,
It's a bloody RAT! RATS do noot belong on a leash, you must be a
very SAD PERSON to bring a RAT on a leash for a walk.
If God is watching, and I hope he is, I pray that a large dog or cat
will grab hold of the RAT up and take it to where it belongs.
A SEWER as far away as is possible.
You need treatment.
You must be a mad person.
Only a SAD, MAD person would take a RAT on a leash for a walk.
People have been locked away in an ASYLUM for doing less.
It should be a CRIME for people to keep a RODENT, any RODENT.
I think I will groow to dislike you Lisa.
I don't want that to happen.
Please, get rid of the RAT.
Please!
Pat
{:¬))

Hello CHIGGY,
Welcome to the weird but wonderful world of computers and the
Internet!
Yes, the board seemed to vanish for a very short time, but it was not
anything serious, it occured becausae of an erroor that removed a
large number of files from the board.
It was accidental, nothing important was damamged or missing and
thanks to Robert, the board is running again, just like you CHIGGY!!
Robert did not even have to put the board on IV fluids, he is such a
great Computer Doctor.
Chiggy, it is a relief to know that you are doing so well, I will
pray that you will be sent home to be with your very lovely family
and of course, in the care of your wonderful wife! Your wife is very
shy, she never comes to the board on the computer, but please give
her my best wishes and thank her for being a great carer for one of
our Pancreatitis Patients. Our doctors are great and we need them
desperatly to help us to mend. But, our carers, like your wife, and
your entire family, are essential to our wellbeing, we, the patients,
would be in very bad trouble if we did not have wonderful families
and friends to care so well for us.
Chiggy, please take great care of yourself, do not over do things and
be careful what you eat and what you drink. If you are in very bad
pain, you shoulld contact your doctor foor some pain relief, do not
thry to be brave, you will only be stupid if you ignore the really
bad pain.
Good bye my friend, and good bye to Christina, and to your wonderful
wife also.
Pat
International Moderator

Chiggy,
You sound well! I am sooo happy for you! I think you had us all a little
worried about you. Get better soon! We miss you!
Lisa
Simi Valley, CA
by the way, something happened to the post, they got accidentally deleted or
something. Robert is trying to restore the post, just be advised that I noticed
they are not necessarily in order.

Pat,
Speaking of Ratso, We took him on our walk too. He has his own little leash,
well it was a bunny leash but it works perfect for him since he is about the
same size as a bunny. My husband has gotten a really good laugh about how you
feel about our little "puppy"
Lisa
Simi Valley, CA

Hi everyone, I am confused to what happened to the board. It was
there last night and it went away. I hope it is repaired soon. The
doctor put me on clear liquid diet yesterday. He is going to take IVs
out tomorrow. I might be going home then. I want to go home with my
family. Home. Christina and my wife say hi. They are here now. Keep
us in prayer. Chiggy

Hi Lisa,
Despite the heavy feeling in your chest, you sem to be pretty bright
right now, certainly a big improvement on the weekend just gone by.
Great news, long may it last.
Lisa, I have had this scan, or something pretty similar so far as I
can recall.
I do remember that as the doctor injected the dye, I did feel and
exceptional sensation of intense heat centrally, in my chest. It
spread through me pretty rapidly and as quickly as it came,it
dissapated through mmy system. I recall that the initial sensation
was a little disconcerting, maybe even scary to be honest.
I believe I will be fine, assuming they proceed with it, given that
I'm taking antibiotics at present.
One thing I can say with absolute certainty, is that I will NOT have
any news on the findings of the radiologist that will report on the
scan. that report will be sent to my GP's sometime in the next 7
days, perhaps longer if the radiologist needs to confer with a
colleague locally, and even longer in a case where there is something
unclear or suspect that the radiologist needs and expert opinion on.
The scans will be sent to a "Centre of Excellence", usually in Dublin
to be fully examined and reported on. the latter is pretty unusual,
and woulld normally signify "trubbbllleee". We will not consider that
possibility now.
Hope you are keeping well and more importantly,
keeping well away from RATSO! Yuk!
Pat the Rat hater.

Jerry,
Thanks for posting the article, and inviting comment.
In Ireland there are very strict laws governing discrimination in the
workplace against pretty much everything. It covers all
potential "likely" problem areas, such as gender, age etc and of
course disabilities. Generally though, "disabilities2 refers to the
especally physical ones that affect access and healthand safety
issues, like wheelechair access and ease of egress in and emergency.
When an employer advertises they must accept applications fromm
everybody and they do employ many with dissabilitys.
I cannot remember when I last heard of an employer not requiring a
prospective employee to undergo a medical examinationprior to being
offered the post. It would only be say the final 5 perhaps to submit
to the medical examination, the employer will be paying for it anyway.
To the best of my knowledge, a prospective employer is legally
entitled to decline to employ a person based on the advice of the
medical examiner.
My personal feeling is that "honesty is the best policy" and I would
be sympatetic to an employer that fires someone that was not
forthcoming at the time of interview. It is unfair to the employer
and the other applicants if you know that you will regularly be
unavailable for work on a frequent basis and you do not disclose that.
Naturally, it is not always a clear cut situation when you have an
unpredictable disease.
Pat

Thank you Jac,
I am inclined to agree, I think this "flushing" is a precursor to
followinng increased pain and discomfort too.
I hope your on the good side of pain and discomfort currentlly and
for the future.

Hi Pat, i am a woman,and no it`s not " wimmins things " as i`ve
come out the other side of that. It`s the old pancreas, i think it
is the start if it begining to play up. Because everything comes
after the sweats,including stomach starting to feel bloated, ect ect
ect. Jac.xox

This article appeared in today's Wall Street Journal. I don't agree with it, but
it contains issues we should all deal with and understand, if we're working.
Submitted for your perusal...
Jerry/NC
************************************************
Should Job Hunters
Reveal Chronic Illness?
The Pros and Cons
By JOANN S. LUBLIN
Staff Reporter of THE WALL STREET JOURNAL
Graphic artist Lisa Hall hid her stiff and swollen fingers during job interviews
last spring with Kaestle Boos Associates, an architectural firm in New Britain,
Conn.
The firm hired Ms. Hall without knowing that she has had scleroderma since 2000.
The chronic connective-tissue disease typically kills patients within 10 years.
If she had divulged her disorder before she joined, "the safer route would have
been to hire someone else," says Laura Morris, her supervisor. But, she adds,
"I'm glad I didn't."
To tell or not to tell is a complex question that job hunters with a chronic
illness must confront. Thanks to improved treatments, many of the 125 million
Americans with a chronic condition hold jobs or seek work. Federal disability
law bars most employers from asking about an applicant's ailments. However, the
U.S. Supreme Court has ruled that a company may refuse to hire a prospect whose
medical condition might be worsened by a particular job.
Individuals with a potentially debilitating though unobvious chronic illness
often keep silent about their condition during their job search. "If you
disclose beforehand, employers can find a million other reasons not to hire
you," warns Darren Flomberg, a career coach and rehabilitation counselor for the
Five O'Clock Club, a career-counseling network in New York.
OFFICE SPACE
See more on office life at Careers.
Ms. Hall agrees that favoritism toward healthy candidates "is a fact of life."
So in applying to Kaestle Boos, the 34-year-old artist decided "to play off my
ability, my experience and my background."
But covering up her disease deeply disturbed Ms. Hall. "I didn't want to lie,"
she explains. A week after she started work, the probationary staffer felt
comfortable enough to tell Ms. Morris and other colleagues about her
scleroderma. "I said, 'I want no special treatment. I may have a bad day once in
a while.' " She promised to make up work missed due to her medical appointments.
Some bosses would feel betrayed by a new hire's deceptive behavior. Ms. Morris
reacted differently. "My concern was, 'Can she do the job?' " the marketing
manager recalls. Her qualms soon dissipated. Ms. Hall demonstrated she's very
talented and thrives under pressure. "It's nice and calming when things start to
go crazy and Lisa says, 'We'll figure it out,' " Ms. Morris says.
Chronic-illness coach Rosalind Joffe makes an equally convincing case for
pre-employment disclosure. Ms. Joffe, diagnosed with multiple sclerosis 25 years
ago, has divulged her disease in advance of landing spots as a teacher and a
mediator. "More people should consider [disclosure] as an option because there
are real upsides," the Newton, Mass., coach contends.
Ms. Joffe urges clients to bring up their chronic condition while negotiating an
offer. Then, both sides "know what's on the table. You're more likely to walk
into a situation that's more flexible," she says. You don't have to provide many
details about your symptoms, she continues. "Say, 'I have a chronic illness and
this is how it affects me.' "
Bring up your chronic illness during the recruitment process "if there's more
than a 10% chance of there being a problem during your employment," concurs New
York executive coach Dee Soder. Explain what you've done to reduce the chances
of a flare-up, she suggests. Hiring managers appreciate "that you're taking the
unpredictability out of it."
Heeding such advice, 22-year-old Amanda Daly revealed her mild multiple
sclerosis after a Massachusetts museum offered her an historical interpreter's
post last spring. The museum wanted the fresh college graduate to wear a wool
costume and mainly work outside. She knew she might tire easily doing so on hot
days. Officials agreed that she could work largely indoors or take a different
outdoor assignment that didn't require a costume.
The Boston-area resident, who had begun job hunting in January, spurned the
offer because she disliked the prospect of an 80-mile roundtrip commute. She
later cited her illness in cover letters to employers that serve the disabled or
promote their interest in diverse candidates. That gambit hasn't paid off yet.
The accomplished young singer is now debating whether she should disclose her
disease during a second round of job interviews with a Boston music organization
this month. "You don't want to be sneaky," she says. But "everybody has
something that employers will find out with time. And I don't have a visible
disability."
A New Jersey newspaper reporter informed management about her ulcerative colitis
before she accepted her current spot in September 2002. Her upfront frankness
paid off when she needed a weeklong hospital treatment last month for the
chronic colon inflammation. Higher-ups "were all incredibly supportive, [with]
no questions asked," remembers the 28-year-old journalist. "If employers feel
like they've been duped, they have much less reason to be supportive about your
missing work."
In the final analysis, chronically ill applicants must carefully weigh the
pluses and minuses of exposing their malady sooner rather than later. As Ms.
Joffe notes: "There's no right or wrong."
E-mail comments to me at joann.lublin@.... To see other recent Managing Your
Career columns, please go to CareerJournal.com.
Updated January 13, 2004

Pat,
I am here, I have been sleeping on the sofa this afternoon. I don't know why but
I was so sleepy all of a sudden. I also had this heavy feeling in my chest and
a hard time breathing like when I was in the hospital on the diladuad. Oh, well
I feel better now, and I am going to take my boys on short little walk. If you
look at the photo of my boys that is posted you will see my 6 yr. old sure can
use the exercise.
I have had the CT scan with the yucky stuff to drink before. Here they gave me
a drink that was supposed to orange flavored and it tasted like a thick syrupy
flat orange soft drink. It did not make my pancreas hurt but it did make me
vomit. I told them this when I went for the procedure and so they did the
procedure as fast as they could before I could vomit it out. Sorry not pleasant
to talk about. Pat, before they inject the dye into you, please tell them about
the breathing difficulties you have been having. Because of my asthma, I have
to go the hospital for this procedure because the dye can make your breathing
even more difficult. I don't mean to scare you but I just want you to know and
to tell them. Good luck, I will be anxiously awaiting your arrival home with
good news.
Lisa
Simi Valley, CA

Lars,
I am so sorry to hear of you and your wifes having to deal with this terrible
disease, among the many other maladies you have described. I am however glad
that you have come to our group to look for help and education about the
disease and all that it entails.
This group is a great place to come for support and friendship, as well as
information. We have a great deal of information listed in our links section
that you may find useful in your search for ways to cope with the different
symptoms that go along with it.
Thank you for sending your information so promptly, and I look forward to you
posting soon!
Take care and God speed.
{{{HUGZ and prayers}}}
Denise
Denise Hallock in Michigan
Co-Owner ~ The Pancreatitis Place

Hi Lisa,
How are you? I have missed your posts, maybe because of the
unavoidable error, so I have no idea if your home or in hospital?
I've been praying not the latter.
My lung infection is still with me, I feel really under the weather.
I never had to deal with this before so it's all new to me.
Hope it goes soon
I had to take some "YUKKIE" stuff this evening, GASTROGRAFIN, in
preparation for a CT scan tomorrow. I know that I will have to drink
over a Litre of the same liquid over a period of an hour prior to the
CT scan and then they will inject more contrast dye into me during
the scan.
My concerns are that this Yukkie will affect mmy Pancreas, it is
known to cause some liver messiness, and kidneys too.
Do you, or anyone radinng this have any experience of this liquid?
It has a sort of aniseed type taste to it. YUKKIE YUKKIE YUK!
Pat

Hi Jeannine,
Noot much point wondering how it occured, it was an accident so it's
probably not certain to understannd the cause anyway.
Just thank God we have an exper that can rebuild us, just like
RoboPancs!!
Robert my man, Please take care you do not over do it, not worth
being sick over, please be careful. Your diabetes is bad enough
already, stay safe.
Pat

Hello Eileen,
I have sort of missed some time on the boards, did you tell me your
husbands name? I remember asking but can't recall any answere and
until the current post problem is resolved, I can't be sure.
Regardless, how is he?
Pat

Jeannine,
Forgive my ignorance, but what does the VA stand for?
I have guessed that it is the Veterans something, but I cannot be
sure.
Can you explain to me, a foreigner!
Regards,
Pat
BTW
My neighbour retired from the Irish military about 2 /3 years ago.
He did a course in Tai Chi at my suggestion and he has gon on to
become a registerd facilitator in the practice of it.
He has also done several of the levels in Reiki and is a master in
another disciplin, CHI Quong, that's the way he spells it but i think
it's actually spelled differently. It' a form of Tai Chi, but it's
done sitting, he has had remarkable results with some people,
including an Autistic young girl of about 11/12. She has begun
interact and to verbalise for the first time ever, only a little, but
from zero, that's a lot!

Denise,
My best wishes to you and my prayers too for your trip to the
hospital to see ZENA, I still find the beauty in that name everytime
I use it.
I will not attempt to use words to express my sadness and distress at
the tragedy of her condition, none that I have are remotely adequate
for the purpose.
Suffice to say, I hold her near to my heart as I pray, and you are
also there as you go to visit with her. May God guide all involved in
her care and all the decisions to be made for and about her.
Pat

Hi Jac,
Don't be offended, for any reason, but it would help me to know your
gender, purly for reference, as the "flushing" question covers such a
range of possibilities for the ladies that unless they are absolutly
certain that the "flush" they describe, or speak of in their answers
is definitly not a "wimmens" thing!
Yes, Jac, I have noticed, it took a while though, that I feel the
nausea almost doubled in intensity after a "flush" and a sweat, so I
do think it is related in some way to the underlying illness.
My BSL's and BP are always fine when it happens.
I find the almost "instant" way it occurs to be especially
distressing.
Thanks for your input, I greatly appreciate it,
Pat

and it wouldn't hurt to know the order is all mixed up...you get
replied before you get the original message...how in teh world did
this many messages get deleted and why? This is the second time,
isn't it?
It is so good you guys can rebuild the board, even if it is a little
confusing for those of us who live in the Home for the Bewildered !!
<<<grins
Thanks Robert for your help here !!!!
Hugs, Jeannine

Hi Guys,
I know I'm Not Robert, but I figured I would pop in and try to give everyone
a bit of an explaination as to why we are having all of theses extra posts.
There was an accidental Deletion of a great number of posts on the 12th, and
Robert is simply re-posting some of the posts that he can for us.
I'm so sorry this has created a build up of email fro so many, but its the
only way we can get them back onto the board. You can safely delete these
posts, since many of them are better than a week old.
Thanks Guys and again I apologize for any inconvienence this may have caused.
{{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
Co-Owner ~ The Pancreatitis Place

I have body-wide pain (fibromyalgia) and diabetes and have noticed
when my sugars are high my body aches more...and drags me down...just
a thought to consider...not a doctor, etc....
Hugs, Jeannine

Mark's came on exactly six weeks after they switched him from Lipitor to
Zocor. All of a sudden, his triglycerides were over 2900...
Eileen

This has recently been one of our topics and since I work for the VA
I wanted to show what one of our hospitals did:
HEY VA! HAVE YOU HEARD? January 13, 2004
How does an entire medical center thank the spouses, children and
friends of patients who tend to their medical and emotional needs day-
to-day? The Philadelphia VA Medical Center did it on CARE (Geriatric
Caregivers' Appreciation Recognition and Education) Day. Focused
entirely on the caregiver's, CARE Day was a chance for caregivers to
relax, and learn new techniques to make their jobs easier. Philly
VAMC staff taught their caregivers how to triage emergencies at home,
safely transfer a patient, and recognize and manage psychiatric
problems. Caregivers also learned techniques to better take care of
themselves, such as Tai Chi and meditation. CARE Day recognized those
who provide care to loved ones 24-7 and recognized them as an
important part of the VA health care team.

I also get the sweats, and it feel`s like you are dunked in boiling
water, the sweats and then you go cold, but still sweaty. I find
that this happen`s after my stomach turn`s over. It is very worrying
cos you do not get any warning. At times i do get it running down my
face, and nausea straight after.That lasts for hours. Jac.xox

Date: Sun, 11 Jan 2004 03:49:43 -0000
From: "Ellen Grove" <esquare726@...
Subject: Dr. Francis (Frank) Gress now at Duke
As I have been posting for a very long time, I've had substantial
pain relief from a series of EUS celiac blocks over the past seven
years. I've undergone thirteen since September of 1996.
Those are the nerve blocks that are done internally via upper
endoscopy that is guided by ultrasound.
They are performed by a GI endoscopist and not by a pain management
specialist/anesthesiologist. Sadly, there are very few such
specialists around the country.
I have been very fortunate to live near one of the few hospitals
where they are performed. All of mine were performed by Dr. Gress at
Winthrop University Hospital in Mineola, NY which is suburb of New
York City. He also performed a bloodless EUS guided pancreatic biopsy
in 1996 that proved, without any doubt, that I have CP.
Dr. Gress just left that hospital and has joined Duke where he will
not only continue doing his "magic" with an endoscope, but will be
teaching.
-Ellen Grove

Date: Sat, 10 Jan 2004 15:38:51 -0800
From: "Lisa Chambers" <chamberslm@...
Subject: Re: Dinner
Jerry,
Doesn't that country use allot of oil? I know my mom uses allot of
oil when she makes it so I don't eat it anymore. I am so sorry your
sick now.
Lisa
Simi Valley, CA

Date: Sat, 10 Jan 2004 23:20:39 -0000
From: "Robert" <robert@...
Subject: Lost Email...vaporizeed....gone ! Kaput !/// Pat
Pat,
I had the problem of everything going kaput on my computer about
noon. The keyboard, the mouse and stuff inside my tower. I spent the
entire day trying to locate enough to get me back in the game. So far
my trash can has my mouse and keyboard. I doctored up the tower
enough to get by until next week. You are lucky to have lost only e-
mail. Say your prayers of thanks!!! When things go bad they know no
limits!!!
Hope you are having a better day than me,
Robert
A Founding Member,

Date: Sat, 10 Jan 2004 18:28:35 -0500
From: "Jerry Pople" <jmpople@...
Subject: Dinner
Isn't this disease wonderful? Tonight I made Roasted Chicken, Country
Gravy, Mashed Potatoes, and Green Beans for dinner. It tasted great.
Just as I was ready to get up from the table - IT'S NAUSEA TIME!
Gawd, I hate this disease.
Jerry/NC

Date: Sat, 10 Jan 2004 17:53:34 -0500
From: "Jerry Pople" <jmpople@...
Subject: Re: Re: For EveryoneFOR ReeAnn//PAT
Hey Pat,
She didn't mention me, either. But I'm used to being overlooked.
(Sigh. Tear in corner of eye.)
Jerrry/NC

Date: Sat, 10 Jan 2004 22:14:16 -0000
From: "Patrick (Pat please)" <pcassotoo@...
Subject: FOR JAN=HONEY B