Huge archive

thanxs for ur reply, i appreciate it...had another attack wednesday night...they
gave me liquide morphine...which of course didnt help.....another trip to the
hospital at 10:00pm ...i used to have the attacks once a month and pain every
day that i got used to...but now the attacks r coming more and more every
month..any suggestions for medications...
brenda
shania_twit <shania_twit@...
Hi Brenda
Thanks for replying to my email....my CP is not hereditary it was
caused by and auto accident. Althought I too am in my 30's....There
are people on the board though with HP. I am sure they will chime in
once reading your post. It seems that everyone with the disease, no
matter how it started, have very similar experiences with symptoms
and what not.
Best wishes
Patricia

Pat,
I am so glad you enjoyed it. It is wonderful. I grew up spending my summers in
Kentucky with my stepfathers family and it was a staple on the ranch. Biscuits
covered with country gray and sausage or country ham for breakfast with eggs
fresh from the chicken coop. Supper would be more of the same or fried chicken
or chicken fried steak, which is a thin steak dipped in egg batter and flour and
fried like chicken. Boy those were the days. I very rarely eat anything like
that any more. I do have my biscuits and gravy on Mothers day, and only on
Mothers Day, since my mother makes it for me and she makes it using the
drippings from sausage. I can not eat this way more than once a year and I do
pay dearly for it. If you would like more packets sent to you I would be happy
to do that for you, just let me know. I am glad you are feeling well enough to
be up and about and eating! We have had the stomach flu this week and have been
not eating much of anything. I lost 8 lbs. since Monday, I'd like to lose more
but the flu is the worse way to do it, okay, well CP is the worse way to do it
but the flu is a close 2nd. My pancreas is not happy at all right now. I am
really suffering. My Dr. does not to refill my Percocet. He wants me to go
back down to the Norco and I am suffering badly. Also I am out of my nausea
medicines and he is out of town and his nurse will call in a refill without his
ok. I might need to call Cedars Sinai and leave a mssg for Dr Lo. I can not be
without my nausea meds. I have only been popping in and out as my pain allows
so I may be a bit slow to respond to e-mails right now. Please everyone bear
with me, I will respond if needed, it just may take a few hours. God bless to
everyone and Pat I hope you continue to do better. You sound so much better.
Tell Lily she is brave woman to live with you and she really must love you
allot!
Lisa
Simi Valley, CA

Hi Robert,
Sorry to hear that your having such a rough time with your diabetes right now.
I just wanted you to know that I'm keeping you in my Prayers. As a matter of
fact, your getting a extra ones, until you start feeling better. Take Care,
buddy and feel better real soon. We miss you, but most important, take care of
yourself.
Take Care,
Louie in WV

Pat; Thank you for the advice, we really appreciate it.
Jim

Hello Lisa,
And just how is my Simi Valley Sunshine Princess?
I only popped in between dozing and waking to see who is about and
out of the woodwork pops the RAT QUEEN! NibbleNibbleNibble! all day.
I had some of the sauce with a small piece of chicken last night, it
was delicious, it was simply divine! I did not eat much of the
chicken, it was only a half of a chicken fillet or breast, which ever
word you prefer to use in the US.
I coated the chicken in egg yolk and seasoned flower, with pepper, no
salt as the seasoning with a tiny pinch of allspice in there as well.
then I coated the chicken with more egg and then in very finely
ground golden brown French bread crumbs. Then the chicken was sprayed
with a low fat unsaturated cooking spray,and cooked in the oven at
high temp first to begin the crisping and lowere slightly to reduce
the risk of it burning. I'll check the name on the oil spray and tell
you later, it has no calories to speak of, in it's fine spray form at
least,but it gives the food a very nice "roasted" feeling and taste.
We had some tiny potatoes, not the tinned ones, YUK!, and some frozen
peas.
Then Lily halved the packet of sauce and made it up as directed, also
halving the liquid as well. It was totally DELISH! Well wort the
risk of some pain later, which actually did not occur, at least I did
not feel any extra discomfort. Which in itself is a minor miracle,
however, I can well see how I could get carried away if it was
available here. It's not thank God!
Lily could not get enough of it actually. HOLD IT! HOLD IT! Enough of
the Country Sauce I meant, not what the sniggering ones in the back
there were thinking. She asks me to thank you Lisa, and I do, and
thank you from me too, and from Louie, he gets most of the meat off
of my plate anyway.
The sauce has a taste that is redolent of the sauce that the original
Colonel Saunders KFC used to sell, only rhat was brown in colour,
well tan anyway. The new Mafia Fried Chicken is awful,and the sauce
is a shadow of it's former self also.
Sorry Lisa, I'm falling asleep again, I'll contact you soon, I
promise.
Pat

Don't choke on MY account, kind sir ! :)
There is a flour here in the states called Spelt...and they make a
bread out of it too. I find it a poor substitution for the real
thing! It's very dense and makes for a heavy loaf of bread.
The other thing to try would be any of the flours that are not made
from wheat or semolina etc...rye, oat, etc. Bran is a part of the
wheat I believe so think it won't be a good sub.
They make corn and rice pasta (oh and a rice bread that was the
better of them all). I found the corn pasta to be bitter, but
couldn't tell any difference in the rice pasta other than color.
Maybe you have a store that sells or caters to the ones who want to
eat whole foods as it were? I find the prices to be quite a bit
higher than the regular cost of things...but I do so like breathing
freely!
I have had such a craving lately for good ole fish and chips that I
have thrown caution to the wind and just indulged anyway (taking
extra of my lecithin to keep everything quiet on the home front)!
It's been too many years (eleven now) since I have had any decent
battered fish...these crazy folks up here in WA State like it
breaded for some ungodly reason ! :)
So right now I'm a bit sniffy as it were...but will be clear headed
in the morn.
Later...Jeannine (no nasty comments...)

Dear Robert,
I'm sorry you're unwell just now. I hope it passes quickly. Many
thanks for all the information you gave me on various aspects of
this condition. I wish you a speedy recovery and will keep you in my
prayers.
Good wishes,
Fliss

Hello Laura,
As a new member you are welcome to post to the board right from the
moment you joined. Ther is no need to send your messages or queries
to us by email.
Perhaps you are not too familiar with how boards work, very many of
our new members are not, some are coming for comfort and help for the
first time, never having had a need to do so before. So, just in case
that's the case, then we will try to tell you how to post, and keep
it simple as possible too.
Here we go Laura;
In the left hand column, you will see several options, beginning
with "HOME", followed by "MESSAGES" and then "POST".
Simply click on post and you will be taken to a page that has a
dialogue box for you to use for your post.
Top line is for a heading, usually a clue as to what the post is all
a bout, and'or a name of a member that you wish to ask a question of
or make a comment to.
The large empty box is there just waiting to be filled with words
just by you. It's a simple as that.
When you are finished your post, scroll to the bottom of the page and
click on "POST"
Viola! you have made your first post.
Kindest regards,
Pat
BTW,
Thank you for your prayers and good wishes for Robert, he will really
appreciate it, he is usually one of the first to post to a new
member.

Hello Jim,
First off Jim, your entirely welcome to jump in here, emergency or
not, your a care giver and very special to us. glad you did come for
help, I'm pretty certain we can organise somethig here.
Up front Jim, I live in Ireland so our systems do differ, ok? But
people in trouble are pretty much the same the world over so my two
cents worth are as follows;
Something else to consider here too Jim. Perhaps this is not the time
to be changing doctors either. when you are well you can afford to
undergo tests etc that a new doctor may want to pursue, but when you
are in a really bad way, then stabilising the condition is, or should
be, the priority. the ER that Chey would have used up to this point
will have some record of her condition, plus they can draw bloods and
check enzyme levels too. You may have to use all of your charms to
convince Chey to go there, but it may just be worth it. If Chey is
admitted by the ER staff then her present doctor can be pressured by
the hospital, by phone if necessary, to get her a refferal to the
specialist, or maybe even phone the specialist and arrange for Chey
to be seen straigt away. Personally, I would make getting Chey
stabilised my priority, she could succumb to all kinds of problems in
withdrawl, including a heart attack, and she does not need that right
now. Neither do you Jim!
If she goes to her local ER and they do not want to see to her, then
maybe one of the doctors at the ER will give her a letter if she, and
you of course, explain the situation to them, but do not mention the
withdrawls at the first moment, hold off on mentioning the word
withdrawls, they always get a little "skitterish" if they hear that.
Keep one thing in focus all the time, Chey's first priority MUST BE
to get her situation STABILISED first. Everything else can follow on.
Plan B, JIM!
Can you phone the new doctors office, the one that Chey needs to see,
and check on that doctors schedule first. There is little point in
facing into a 60 mile round trip, minimum that is too, if the doctor
is not even in town on the day you go there.
If you get to speak with the doctor personally, then great, tell him
exactly what he needs to know, nothing more, he needs to know that
Chey is very ill, that her present doctor is out of expertise and out
of town too. I would not particularly see that you should tell him
about the withdrawls, if he agrees to see Chey without knowing that
then he will not send her away when she arrives, that's how I see it
anyway.
If the doctor is not available to speak with you, ask if you can
speak to one of his partners, they can't all be away on the same day
surely, or perhaps one of his junior assistants, this is where I'm a
little lost Jim, I don't know the pecking order. However, once you
get to speak with someone that can make a decision then do as we
discussed above.
I'm pretty sure that Chey knows by now that her best course is to
stop eating, not a problem usually, we don't feel like eating in a
flare up. Just keep her fluid volumes up if she can hold down fluids,
if not then some popsicles are good to suck on, cooling and
refreshing too. If that's not a flier, then some crushed ice is a
good route to take.
It begins to get nasty if her condition remains bad and she is not
taking at least fluids for some time, personally, I think 24 hours,
MAXIMUM, provided that she was well hydrated to begin with.
Now Jim, to the really hard part.
Once Chey is in a bad state, like she appears to be now, and if she
has any other health issues, such as cardiac, liver, kidney, diabetes
or any serious illness's, then she has no choice but to bite the
bullet and go to the ER, PERIOD.
Good luck Jim, my prayers are with you, and those of every member of
the TPP Family, please, when you get a chance, will you keep us up to
date on Chey's condition, and we also want to hear how you are coping
too, you need all the support you can get right now, and we are here
for you in just the same way as for Chey, tha's all the way Jim, all
the way.
God bless you and Chey and keep you both safe and well
Pat

Hello Jeannine,
This will probably choke me but here goes anyway.
THANK YOU, whew! I'm glad that's over, for the information on the
problems caused by wheat, especially those problems with the sinus
and nasal cavities.
Some myears ago, could be as much as ten, I was having an awful time
with my sinus problems of many years standing. Actually, all my life
with hindsight.
We have a chain of health food stores here called Nature's Way, and
they also have a major distribution company that supplies other
similar outlets through Europe.
I was having accupuncture and Reiki for my spinal injury and Chronic
Neuropathic Pain and the person helping me suggested that I visit a
shop in that chain of stores and have a test called ;
"THE VEGA SYSTEM".
I don't know if you have heard or this test, basically, it's a test
to dicover if you have any allergies, more accurately, it's designed
to check WHICH allergies you have, apparently the developers of the
test say that we all have an allergy to something.
It's to much work to describe the all the steps but at the end of my
test I was told That I had an allergy to cat hair, wheat and salt of
all things. The cat hair was aproblem because I had my lovely kitty,
Tigger, (yes, not very original, my G/S named him)but i had my sinus
problem long before Tigger arrived so forget the cat hair straifgt
away. Salt was no problem at all as i hate the stuff, as does all my
family, it's never on the table in our home but is available for
guests of course.
So, that left the wheat! So your right on the ball with this one i
think, problem is Jeannine, I do eat a lot of bread, and before my
Panc problems, I almost lived on pasta. Now I eat very little except
bread rolls and sometimes a little white meat. Of course I do eat
some fruit, pears are a favourite of mine, and sateamed veggies now
and then.
How in Gods name do I find a substitute for my bread? It's such a
staple for me, but I admit, the pain and discomfort from my sinus
problems is reaching crisis point and with your evidence on my
existing evidence, it may come down to making a choice, and soon too.
got any PLEASANT suggestions for me, keep the nasty ones to yourself
Madam. ;¬}.
Any one can throw their two cents worth in here too, I take all the
help I can get.
Pat

Hello everyone, my name is Jim, I am Chey's boyfriend, and I
hope
coming into this group like this is ok, but even if it is not- I
still need advice.
Chey is very sick, she ran out of her meds six days ago, and she
just got them back yesterday, but she was neck deep in withdrawals,,,
which of course set off an attack, so that now that she has her meds
it really doesn't matter. She is full of anxiety and frustrations
and
you name it, Pain of course, and her doctor told me yesterday that
there was nothing he could do for her anymore and that she was beyond
his scope of knowledge with pancreatitis patients. Also that he
thought she should go to the hospital, but is not willing to admit
her. I also think she should go to the hospital, and she herself
feels this way, but I think most of you know how that usually goes,
they think you are a drug seeker and treat you accordingly, we all
know how difficult it is to get them to believe that you are very
sick and in need of immediate medical attention.
So, The doctor she wants to start seeing is in the next town, he is
a specialist and has five other specialists in his office as well.
But she either needs a referral or has to go to the next town away -
thirty miles - and hope they believe her and hope that the specialist
that she needs to see is on-call for that particular shift, if she
wants to see him. The problem with the referral is that her current
doctor is gone for at least the next week, and she can't get a hold
of her other doctor who would probably give the referral that she
needs.
So, what do we do, she is desperately in need of help, and we can't
find her any.

Hello Karen & Jac especially, but also for everyone too.
Thank you so much for answering my call for prayers.
Karen, you asked me to pass on your thoughts and your prayers to
Robert, well, posting them to the board is giving them directly to
Robert, his family check the Board for him. His Brittle Diabetes has
somewhat affected his eyesight for some time now, mostly he is fine
sightwise, but when his BSL's go wild, his vision is one of the first
things to suffer. Usually his sight resolves to as good as before
but each bad episode will leave it's mark and then, well, who knows
really. SAo just keep posting your prayers and messages of hope for
Robert as often as you think about him, he will at least hear of them
for the moment. Of course, when he is well enougfh, please God, he
will be able to go back over them and read them for himself.
What a great boost that will be for him? Imagine seeing post after
post of nothing but POSITIVITY, KINDNESS & HOPE, Brilliant.
Perhaps I should have mentioned that understanding that not all of
our Family is religious or practicing any form of praying etc.
Well, you can still offer Robert some words of comfort and hope, he
will appreciate them just as much, Robert respects all points of view
in a totally non-judgemental way.
Take care everyone, and please, keep those prayers and words of
comfort and hope pouring in to the board for our beloved Brother in
Pain. Remember, don't just stop with one "Post Of Hope" for Robert.
Pat

Hi, Robert, i am with Karen and just about every one else, you are in my prayers
also, to gether we shall see you through this, much love and best wish`s. Jac.
xox
Karen Weston <karenw@...
Please pass this on to Robert.
Robert,
Please know that you are in my prayers. I pray for God to with you and provide
the strength your weakened body needs to get through this crisis. I pray for
God to be with your family and give them comfort in this very difficult time.
God bless,
Karen W

You are missed terribly here. However i have had you in my thoughts, prayers
and many many candles burning throughout the house........... in every room.
Each was lit with a special all it's own~~~ just for you. DId i mention
i bought 100 candles yesterday? They won't last long as they are burning
morning, noon, and night! I can feel your fight inside... and You're going
to win this one! I just believe it! I've asked all my guardian angels to
keep watch over you as they surround you themselves with the white light.
This will continue day and night until you are strong again. Eat as much as
you can without making yourself sick. Green tea is always a big help and the
warmth of the tea is soothing to the body and the mind. I've started
something for you.............. and that's a letter each day coming t =o
cheer you up! Some are pretty crazy... but laughing is good medicine! You
are always on my mmind and so is Denise and your loving daughter. You
see... they need you.... so you have to pull it all out and fight like
heck! You still have some fight in you........... i know. WE here at TPP
need you and love hearing from "ourRobert" Shoot bunnies left and
right and do whatever it takes to rid yourself of this devil . i'll be
talking to you later tonight when things are a little more quiet here. In
the meantime.......... give yourself to God and let the angels do the work
for you. ohhhhhhhhhh and all those little reminders around the floor and
couch (confetti's) that's me long distance........... thinking of
you! love you brother, jan xox

What you explained in your last post about your swelling wrist and
fingers and feet........ is exactly the same with me. The morning is the
absolute worst pain. i could scream my hands and knees and ankles hurt like
someone smashed them with a hammer! i have at times gotten down and crawled
to the bathroom because i hurt so bad. i now keep my morphine within reach
with a glass of water on the table beside the bed so i don't have to move
too much. i leave the top of the bottle just laying on top of the bottle
because i cannot twist it off! I take 2 morphine and go back to sleep until
it takes effect... ok.......... the doc says i have reumatiod arthitis.
The swelling is part of the arthritis ( sp?) Here's the killer........ i
need anti-inflamatory med's to help with the pain and swelling HOWEVER
that's a No-NO with pancrreatitis as it will aggrevate the stomach and other
organs. The solution is physical therapy 3-4 times a week! i have to set
this up at the hospital to see what exxactly it involves..... i forgot to
ask! Ssso........... everyone........... no anti-inflamatory drugs for us
CP'ers! As soon as i can get an appt.. i'll let you know what it involves.
As for the nodding out or sudden sleeping..... it's because of the
malabsorbtion problems we have. Somehow the pain med's often gget
stored for a while and then they start disolving all at once . Just like
having trouble digesting food at times. You know how some times food will
just sit in your tummy and you swell and have pain? Then aaafter a while
the food will start to go down or digest. It's the same thing with pills we
take... any and all of them. sometimes they don't get digested and pass
through.... when we think the med's aren't working ... ourr system has
passed them through..so they haven't worked. This is a hard one for me to
try and explain... the doc explained it much better than i. He said because
the pancreas isn't working well or as it should and we have malabsorbtion
problems...(food ggoing right through us without digesting) the same thing
happens with the med's we take. He said whenever possible buy gel caps or
liquid beause the coating on the tablets can't always be digested because
it's too hard so it passes through. Sso for me... the IR (instant
release) capsules are filled with tiny little beads and they bbreak down
quickly and are very effective. The 8 hour time reeleased morphine i was
taking was NOT working because my body couldn't break it down.............
so it would pass. It was a coated tablet. Does any of this make sense? I
understand it , but i don't know if i've explained it well for you to
understand? The tablets ( any medicine) can buuild up.......... say for a
day or so maybe longer.... then something triggers them to be digested..
and they all digst at once......... knocking us out! And it seems to me to
be very dangerous! About the swelling........ he
said stay away from carbonation, salt, pepper,(pepper is a BIG no-no) MSG
and most preservatives. Canned fruit and canned veggies are loaded with
preservatives and salt. Forget them . Fresh fruit and raw, fresh veggies
hae the best nutiirritional value for you. Mmost veggies grilled with some
extra virgin olive oil are fantastic! Oh... i could go on forever... but if
you can't make out what i was saying aaaabout the aarthritis .. ask me
some questions? Cutting back on the salt, pepper,msg, etc. will help keep
the swelling down. Those ingredients actually are holding the water in the
(once injured) areas. i better go now.......... love, jan xox
Pat..... can you interpret this better???????? Also.. try cocoa butter
lotiion on your swollen legs that are cracking from being stretched from
water retension. Massage them with the lotion to stimulate circulation and
get the water moving out of the body. xoxoxoxox????

Hi Pat,
This is Mrs. Ed, I'm Louie and the one who wrote to you. I'm also the one
who has chronic pancreatitis. I know it's confussing with our e-mail address
coming across ehall. I do hope that you will be able to get back your
strenfth very soon. What about a nutritional drink like Ensure or Boost.
Do you have anything like that where you live, that might help you get back
some of your energy. I do know what you mean, when you did say that you
were very active before, and not you can't the the things that you use to be
able to do. I have to give up my job in 98, that I love because of the
crappy disease and that change my whole life. But it took me a long time to
learn to live one day at a time, and once I did, it did help. I do hope you
feel better, very soon.
Take Care.
Louie in WV

thank you so much for the tip!
Lisa
Simi Valley, CA

Pat,
Please pass this on to Robert.
Robert,
Please know that you are in my prayers. I pray for God to with you and provide
the strength your weakened body needs to get through this crisis. I pray for
God to be with your family and give them comfort in this very difficult time.
God bless,
Karen W

Kimber wrote me and told me of something that worked for her artheritis.
She has it bad in her fingers, hands and legs. Her mom has it in her hips.
They take this vitamin called glucosamine sulfate. She just told me
of this a few hours ago. I ran to the store to get some and i took 2. I
feel loads better and the swelling has gone down. She said her mom can't
even get out of bed in the a.m. her hips hurt so bad. So she takes 3000mgs
(3 pills) waits a 1/2 hour and she's able to get up and move without pain.
Kimber swears by it. It says on the bottle it's for healthy joints.. i
have to go....... didn't realize it was late for the doc's...... will
continue when i get back. love, jan xox

HELLO EVERYONE, EXCUSE THE CAPITAL LETTERS, I AM USING THEM
DELIBERATELY TO EMPHASISE THE POINT.
SADLY, OUR BROTHER ROBERT IS NOT VERY WELL AT PRESENT, HIS BRITTLE
DIABETES IS VERY MUCH OUT OF CONTROL.
I WILL NOT GO INTO ANY GREAT DETAILS, OUT OF RESPECT FOR ROBERT, AND
OF COURSE, FOR HIS FAMILY TOO.
I AM ASKING FOR ALL OF YOU TO PRAY EVEN MORE THAN USUAL FOR ROBERT,
AND ALSO FOR HIS WIFE AND FAMILY. ROBERT WAS ALWAYS THE FIRST TO
ORGANISE FOR HIS LOCAL CHURCH TO PUT ANY MEMBER OF THE TPP FAMILY ON
THEIR PRAYER LIST, NOW IT'S TIME FOR ALL OF US TO SHOW HIMOUR
GRATITIUDE, AND WITHOUT DOUBT, OUR LOVE FOR OUR BROTHER, ROBERT.
I'M CERTAIN THAT IT WOULD ALSO MEAN A AN ENORMOUS AMOUT TO ROBERT IF
EVERYONE POSTS A LITTLE GET WELL TO HIM AND AN ASSURANCE OF OUR LOVE
AND CONCERN FOR HIM AT THIS TRYING TIME.
GOD BLESS YOU ROBERT,I LOVE YOU BROTHER, AND EXTRA PRAYERS AND GOOD
WISHES FOR YOUR WIFE AND YOUR LOVELY FAMILY, GET WELL SOON BROTHER,
WE ALL MISS YOUSO MUCHMORE THAN YOU CAN EVER KNOW. YOU ARE THE VERY
CORNER STONE OF TPP.
PAT

Oh my goodness, what marvelous news Lars, it's the most positive news
I have received in a very long time! Congratulations to BOTH of you,
perhaps this will be the start of a new and more enjoyable side trip
on your life's great journey, fantastic.
Many here at TPP will envy Else her new level of relief, but they
will celebrate re very good fortune, that's for sure. You just watch
the messages of confratulations come pouring in, on this site, GOOD
NEWS travels fast thank God. It is just unfortunate that so many of
us are so ill at this point, otherwise the Board would be innundated
with messages. Fantastic Lars, simply fantastic.
Lars, I would advise wearing one of your Viking Helmets in future
when you visit, some of our ladies are know to be very fierce, a few
are former Valkyries!! I can hear Wagner in the background as I
type, watch out!!
Keep us posted please, and give my regards to Else, now that she has
her hair done she has no excuse not to put some pictures on the site
at the Photo section.
You are always welcome, you know that already, but we have an extra
welcome when you visit and bring such great news as this.
Goodness, how much a life can change in just about two weeks, amazing.
God bless you both and keep you safe and well.
Pat

Hello Jan & TOM TOO!!
Honey Bunny, the name of the sleepy disease is NARCOLEPSY I believe.
I may be wrong, but I remember watching a TV show on Discovery a year
or so ago and it said something about it being an hereditary
disease,actually, I think they called it a "Syndrome" but again, I
may be mixing it up, anyway, narcolepsy is the name for it.
I am interested to hear about your swollen hands, fingers and feet.
About early/mid October I noticed my left foot was really very
swollen but when I had it checked in December they showed me that
both legs and feet were swollen, but the left one was swollen even
more.
it has gotten much worse now, my left leg and foot is grossly
swollen, it's awful to look at, and it's shiny and dry, prone to the
skin cracking too, but the pain inmy fingers and hands is a real
problem. i sometimes feel like crying aloud when I bend my fingers
into a fist, it's awful. They are not especially swollen, but my left
wrist is and now my left knee is all swollen and very tender too.
If you get any answers on this problem, i would sure welcome hearing
about it please.
See you later,
Pat

Hi Brenda
Thanks for replying to my email....my CP is not hereditary it was
caused by and auto accident. Althought I too am in my 30's....There
are people on the board though with HP. I am sure they will chime in
once reading your post. It seems that everyone with the disease, no
matter how it started, have very similar experiences with symptoms
and what not.
Best wishes
Patricia

You will be amazed at all the stuff that is avail...I know I was.
They have cereals (though Crispix is wheat-free...from which you can
make Chex Mix that tastes the same!) and snacks. There are these
delightful Bar-B-Q flavored snacks that are very tasty (named GenSoy
soy crisps) and Paul Newman makes wheat-free pretzels with which
work well with the Crispix.
Take the time to read things and you can find many things. I love
the Sweet Potato chips..they are spicy and a bit sweet....
Good luck feeding your mom...
Jeannine

Our big dog, Lady........ part pit bull and opart chow as aarthritis in
her bac k hip from getting it caught in a lazzy boy chair hinge when she was
a pup. I'm going to get her some of the glucosaime for dogs to help her.
It's cold here now........ morning in the 50's high in the 70's and she
limps. poor thing. Lady is thanking you in advance for the help you
offered. I, too am going to get some. That's GREAT help and info for all
of us! thank you so much.! My hands hurt so much i can't even untwist a
bottle ! i'lll let you know..... yes, relief is in sight!! for Lady and
me! love, jan xox

MSG is very bad for CP'ers. It's a preservaative and found in lots of foods.
What really got me is when i found out that the packaged lettuce you buy in
a bag (allready torn up) as lots of MSG in it to keep it from turning
brown. Stay away from the packagd lettuce. i don't know if it says it on
the package, but the lady at the deli told me one day when i was ordering a
sub sandwich! Sskip the lettuce... i'll use the head of lettuce instead.
just another tid bit! love, jan xox

Pat...... i have the same thing going on with me......... just dropping off
into a dead sleep. I can be in the middle of takjing a bite of food to eat
.... and it's like i freeze and go into sleep. I can never have any
warnings of this at all. It just happens. It's pretty scarey because i
smoke and i have gone into this sleep while smoking and only to awake
with a burn on my fingers or on the rug! tom watches me like a hawk. Today
i see my PCP and i plan on talking to him about it along with the
extreme swelling and pain in my hands and fingers and knees??? Strange,
huh? Tthey just throb and bending down i have to grab a hold of something
to pull myself up! I'm reaching 48 not 148 for GOd's sake! This drifting
off is really got me puzzled. It just happens and it happens often. I know
there is a disease that will cause this dropping off into a dead
sleep.......... but i can't think of the name right now. What if this
should happen when i'm driving??? i hope to get answers today. It's like
someone gave me some strong anethesia to make me out of it without knowing
it. Sound familiar??? I wake up not knowing what has happened? 'll
hopefully get some answers. As for the heart racing at times... i have
that happen if i forget to take my med's on time..... it feels like it's
going to jump out of my skin. I will then take a xanax and it will calm
down. I haave low blooooodpressure usually 90/60 sometimes as low as
70/42 has been the lowest. My heart and lungs are remarkably strong for
someone of my age,,,,,,,,,,, they say. i'll get answers today i hope and
report back. love, jan xox

And I don't wanna talk to you anymore if you REALLY think you hate
me ! :)O
You have written a very good explanation...the only thing that comes
to mind that you didn't mention is "anxiety" or panic attacks can
sometimes have pounding heart rate along with difficulty breathing.
I'm trying to remember ...when I have a particularly bad panc attack
it affects my breathing quite significantly and I'm trying to
remember but I'm thinking I get a faster heart rate which is more
noticeable than the normal rate...which might be considered
palpitations? This is a questioning kind of statement as it's been
a while since a really bad attack (thank you Jesus!!!) so my memory
is not at it's sharpest...plus I am fading fast at the keyboard with
the sleep meds kicking in !
I still loves ya Paddy me boy ! You'll come around soon enough !
Hugs, Jeannine

Hi!
How much is 25 microgrammes - not even a speck of dust? Sometimes it´s hard to
imagine the potency of the stuff we´re handling.
Of course it´s much too early to rejoice, but for Else the increase from 100 to
125 µg of Duragesic patches DID make a difference!
Not the first day - but on the second, which is the way these things work. Both
pain and nausea stayed within reasonable limits for the first time in months.
To witness: for the first time since god-knows-when, she even ventured across
the street to have her hair done!! (Since all of us men are handsome by nature,
we sometimes overlook the importance womenfolk attach to such matters ;-))
Best wishes for all of you!
Lars
Lars Olle Persson
Järnvägsgatan 31, 264 33 KLIPPAN
Tel. 0435-142 54, mobil 070-78 77 128
--

oh you really must stop saying nice things to this crazy man ! He
will just get crazier...sit back an dwatch ! Once you open the
floor to him he NEVER stops...and he says such mean things at times!
Things Lisa and I don't deserve! We just don't mind playing with
little crawly critters known as hamsters, or white rats, or guinea
pigs and he goes and gets himself into such a fit of apoplexy that
last time he ended up in the Emergency Room and almost got himself
admitted !
And Lily poor long-suffering Lily, who has to put up with this crazy
man had to hide his laptop computerso he would rest...and Lisa had
to resort to threatening to send him a rat if he didn't...so poor
Lily squealed in alarm when they received a "squishy" package from
Lisa thinking surely it was a rodent !!!
Oh but I laughed at that !!!!! Lisa is SO much fun to get into
cohoots with...especially against this rabid Irishman we have
amongst our family members here ! Who let him in anyway !? Huh?
Enough ranting on this issue...I have given him entirely too much of
my time and thought processes !!!
Take care Patricia and welcome to our little silly corner of the
world where we like to poke a lot of fun with one another whenwe are
feeling a bit better ! And Pat is the favorite one to pick at !
Hugs, Jeannine

No you don't ! :P' phhhhbbbbtttt
you love me and you just can't stand it !!! :):):)

Jeanine,
We have whole foods here in California and I will have to go there, maybe this
weekend. My mother lives with us so I have to constantly hear her complain
about how she can't eat anything! We live in small town (So. California,
anyways) so I will have to drive about an hour to get to the Whole foods market
but it will be worth it for her. We also have a little mom and pop restaurant
about a block away from us that is gluten free so she loves to eat there!
Thinking back, it may have a been post from you about the wheat thing that I
read. I know it was a post from someone that talked about it. So if it was
you, THANK YOU so much for mothers health is so much better now!
Lisa
Simi Valley, CA

Robert,
thanks. I'm feeling better now that I'm out of the hospital and I now
know I have another pain medication besides demerol that I can take
since I'm also allergic to morphine. Somehow my ISP duplicated a large
portion of my emails three times so I have over 3,000 emails to go
through. I can't just delete them because there are my private emails
mixed in that I don't want to accidently delete, so it is taking me a
while to weed through them.
Kimber
--
Kimber Allen
Vallejo, CA
hominid2@...
Note: All advice given is personal opinion, not equal to that of a licensed
physician or health care professional.

Denise,
about your hair loss. Have you thought about taking Gelatin tablets? You
should be able to find them at a drug store. They can sometimes help
stop hair loss or repair damaged hair. It's worth trying for a couple of
weeks to see if it helps. It will also help your nails too.
Kimber
--
Kimber Allen
Vallejo, CA
hominid2@...
Note: All advice given is personal opinion, not equal to that of a licensed
physician or health care professional.

Denise,
thanks. Actually, I just missed spending the actually holiday in the
hospital. Went in Saturday and got out Wednesday (New Year's Eve). I
was finally able to get a decent night's sleep. Anyways, sorry I've been
away for so long, but I had my typical after hospital depresssion and
I'm now going through my email. Somehow, my board duplicated many of my
emails 3 times so I have over 3,000 emails to delete and trying to weed
out the important ones. Hopefully I'll be caught up soon.
Kimber
--
Kimber Allen
Vallejo, CA
hominid2@...
Note: All advice given is personal opinion, not equal to that of a licensed
physician or health care professional.

Jan,
if you are having problems with arthritis a good over the counter thing
to take is Glucosamine Sulfate. My doctor recommends a minimum dosage of
1500 mgs (my mom takes 3000mg and I take 1500mg). I have arthritis in
both hands and I only have pain when I stop taking the glucosamine. My
mom has arthritis in her hips (bone spurs) and rarely has pain unless
she stops taking her glucosamine sulfate. I even give it to one of my
cats (she had a shattered back leg as a kitten and I know it hurts her
in the winter months unless I give her the cat glucosamine - it is
specially made for cats and dogs). It can be found over the counter at
any drug store.
Kimber
--
Kimber Allen
Vallejo, CA
hominid2@...
Note: All advice given is personal opinion, not equal to that of a licensed
physician or health care professional.

Ale,
I am sorry I did not respond to this post earlier, but my whole family has been
down with the stomach flu. Ale, I am 35 yrs. old, I found out I had this
disease when I was 33. Yes this disease will change your life but you can still
have a very good life. I have two small children and yes it is hard but with
the support of my husband we make it through. Do not give up hope of having
children. I believe there are people in this group that have had children while
they were sick and they had happy healthy babies. You will just need to work
closely with your doctors to make sure the baby is getting enough nutrients and
all will be fine. You will be able to take care of them also.
You are here in the US to live the American dream, so live it! Some of us have
been able to finish school, and work very fulfilling jobs. Keep your chin up as
they say and try not to let it get you down. What you are feeling right now is
not uncommon. I think we have all gone through this stage, of why me, what did
I do to deserve this? Well Ale, you did nothing wrong! Remember God will not
give you more than you can handle.
I also live in Southern California. We are fortunate to have great doctors
here! Dr. Simon Lo at Cedars Sinai is just wonderful! Have you thought of a
second opinion? Dr. Lo was the first out 4 different dr's that was able to give
me a cause of my illness, which is pancreas divisum. It gave me some hope to
know what it is and how to treat it. Cedars Sinai has a big research dept. on
pancreatic disease and there are new treatments being developed all of the time.
It may be possible that by the time you are ready to start a family there will
be a great treatment for you. Please don't give up hope, hang in there! Please
feel free to e-mail if you ever need to chat, we are pretty close location wise
so I would be happy to help you with emotional support as much as I can. My
e-mail addy is chamberslm@....
Cheer up and keep working towards your goals, don't let this disease destroy
your dreams!
Lisa
Simi Valley, CA

Hello Jac,
Thank you for your kind words, they mean so much to me, especially
when I'm not feeling too bright.
The truth is Jac, I have never felt so ill, burned out, and so
desperately tired at anytime in the past. Plus, I have no real idea
what is going on for me. I have been to my GP yesterday and she is
almost as baffled as I am, and that worries me a little!
The CT scan I had last week has shown I have "Fatty Liver" disease.
I had not heard very much about it, except for a mention by someone
on TPP a while back, I believe it was Lisa, so I will have to check
out what it involves.
I have discovered that it does cause extreme tiredness, and that
could go a long way to explain why I feel the way I do lately.
I cannot keep my eyes open when they decide they are going to close.
Honestly, earlier today, Lily had propped me up with pillows around
me for support just before she went out to the shops, around 11 am.
I was typing an email to Reeann and in the middle of a word, I just
went fast asleep! I have no idea when or how it happened, one moment
I was wide awake and typing, just exactly like I am now, and the next
thing I knew Lily was shaking me, I was hanging over the side of the
bed, any move and I was on the floor!
It scared the living daylights out of me. Lily had driven into the
town centre to get some groceries and then go into the post office,
but she had forgotten her purse and some keys she needed so she had
to return to the house. Fortunatley she did, because I'm certain I
would eventually have fallen over and onto the floor and probably
broken my laptop as well.
The laptop is back in the boot of Lily's car again.
I will speak to you soon, manwhile, maybe you will give an update on
how things are going?
God bless,
Pat

Hello Brenda, do you have an AOL screen name?
you must have an AOL screen name to join in, you can download a FREE
version of the AIM software to get a name and be ready.
Just do a google search for FREE AIM Software, you will find it easy.
i have contacted Reeann's husband Gary, he is trying to get you to
explain how you can get into the charoom OK?
Watch out for a post from GARY, or an email from him telling you what
you need to do.
Pat
BTW,
I'm so glad you have made the effort to join in, congratulations, you
are going to be Ok!!!!

Hi! my name is jan and i've had CP now fooor 9 yrs or so. It's the pits.
I'm adopted so finding out i had hereditary pancratitis wasn't easy. My bio
fathr die of it. It is passed from father to daughter... daughter to
son......... son to daughter etc. My 22yr ol so n is showing signs of
it but i can'''''t get him to go and check it out! His new born son
was born with acid reflux disease! of all things.llll poor little guy,
he's only 8 months old. Iit was discovered becuse of severe pain
and swelling in my stomach........ nausea and pain unbelie vable
pain. It was found i had lots of psssuedocysts just filling my
insides. I had to remain still in bed for weeks sso the cysts
woulldn't burst and make more damage to the other organs. I had major
surgery last april to remove all the organs that were dead or damaged
because if tge acid leaking inside me. I an't count the many stays i've
had at the hospital over the years. Tests galore The surgeons ended up
re-structuring my entire insides... the organs that were left. I had a
baseball sized pssseudocyst at the tail end of my pan that ha d to be
removed along with part of m pan. My spleen was free-floaaatin outside
itself and was very dangerous........ that came out... gallbladder came
oout, parts of my colon and stomach were removed and restructired intp
parts of my intestine. I have a steal permanent stent at the head of my
pan connected to the colon and intestine. They fillet my deuodum ane
stretched it out so the fluids could pass. They gave me 5% of survival
and the pancreaatic patients one before me and one after me.........
both died. This is critical, dangerous surgery. I had 10
surgeries in one. My lung collaaaaapsed in the surgery so i had
a tube there....... pllus 2 drainage tubes one under each breast i
had to pump oooout throughout the day. I had the right
(////////////jackson Pratt tube in for 6 months afterwards, They are a
real bother, a couuuple months after the surgery.... i found i coulnd't eat
so they put me on TPN with a feeding tube in my chest. It didn't do any
good at all but made things worse, I developed an infection in my blood from
improper care by my home health care nurse which caused me too become
deathly sick. I was on 6 antibiotics I.V
It was awful. The bllood infection landed in my eye causing a severe
eyeinfection and i lost the sight in my eye for good. It can''t be
repaired. Also, i ;lost the hearing in my right ear, too/ never to come
back and i have tp get fitted for hearing aides now.. And to top it
a;ll off all my hair fell out! i'm a mess// The eyee and
hearing loss was due to one of the antibiotics called
vancomyacin. Refuse this antibiotic at all costs. The docs didn't
tell me that these things could happen with this drug.... My nurses
grandmother lost hearing in both of her ears due to this antibiotic.
It's very dangerous. If there is anything you want to talk aaabout at
all.......... just assk. I've been in the hosptaal most of last year
aand i don'tt inntend to repeaat i ttt this year! Now.. i can eaat
litle bites at a time without the TPN thank GODDD, i'm here for you so
ask away! love, jan xxox

Hello Ale,
Oh my goodness, what a difference some words of comfort and a chance
to think again can make for you, you sound very much more relaxed and
positive. This is great progress in a short time, and you can go on
and build on this new found hope. Additionally, now that you have
opened up to your parents and family you will no longer feel the
pressure of trying to keep your condition a secret from them.
Do not get too down over your pain increasing, this will perhaps be
the pattern of your pain from now on, periods of little or mild pain,
and then very bad pain, but if you learn to eat a proper diet, that
will reduce your chances of experiencing increases in pain.
One other thing that you should consider is contacting a Pain
Management Doctor and trying to establish a Pain Management Schedule
so that you keep your pain medication at a level to stop your pain
becoming too much for you to deal with.
All of this can be dealt with when you visit your primary care
doctors or when you see a specialist for follow up after your surgery.
I am so pleased that you have taken to heart all that we have said to
you and then taken control of your illness, it is vital that you
control your illness or it will surely take you over and you will
lose out. When you feel better you caould always go back to Colombia
for some vacation time, it is important that you keep in touch with
your roots. Never loose sight of where you have been, or you will
lose sight of where you mean to go to also.
I wish you good luck when you have your MRCP, I will pray some extra
prayeras to the Madonna that you will receive good news. I will have
my MRCP in March, then you can pray for me and send me good KARMA and
I will maybe get some good news too. This is the way forward Ale, if
we are all there to help carry the loads when they become too much
for one person, then we will all complete our journeys without
becoming too exausted to enjoy the sights along the way.
Meanwhile, I pray that
God and His Blessed Mother, the Virgin Mary, will bless you and keep
you safe and well.
Pat

Hi Patricia,
I have not come across any evidence, so far at least, that heart
palpitations are associated with Pancretic Disease, but now that I
have commited my position to the board, you just watch, Jeannine will
get up on her HIGH HORSE and tell me how wrong I am!!
She better watch out for that High horse of hers, they are a high
maintenance item, and when you fall, boy, have you along way to
drop!!! ;¬} Even when you are "medically educated" like Jeanine!
Hey Jeanine, I meant to ask you, does "medically educated" mean that
you had to be medicated to be educated? ;¬} You poor thing you!!
YEEH HaaW, revenge is sweet, and well worth waiting for too.
Now Patricia, back to the palpitations, my first comment would be to
ask you if you have mentioned this to your PCP?
Palpatations can be, and usually are, benign, they often occur if you
have overdone the coffee, or eat a massive amount of choclate. Most
things that act as stimulants will very often cause palpatations.
Something else that comes to mind arises out of your email to me and
your story. do you by any chance take any muscle relaxants such as
Buscopan? As you have a variety of GI problems it just ocured to me
as a possible cause.
Unless of course, your a secret drinker while lurking? ;¬}
I have suffered with palpatations for most of my life, I had it
checked out so many times I could never remember how many, but the
first time I took Buscopan I ended up in coronary care! but each
time it proved to be just a passing thing.
Until 2001 that is.
Then things changed, and badly so. I got up one morning in February
2001, and within minutes I realised I had palpatations, again, and
after a free period of about a year or so. I did what I always did, I
just carried on, I spent the day driving aroun, I was looking for a
car at the time, but by 5 or 6 pm it began to dawn on me that my
palpatations had not gone away. Worse still, I realised that they
were much worse than ever before, and this time they were going fast
and slow and skipping and banging, like a car engine out of tune.
End of story involves me in hospital for ten days as they tried to
regulate my heart beat, I had developed Paroxysmal Atrial
Fibrillation, and within 3 days of coming home I was back in having
suffered a minor stroke, caused by the bubbling and frothing during
my PALP episodes
Eventually, they got my heart stabilised, it is gerat now, not a
missed beat in since mid 2002.
Moral of the story is get the palpatations checked out unless you are
taking some form of stimulants regularly, and/or check your
medications for listed side effects.
Kindest regards
Pat
Jeannine, I STILL HATE YOU!!!!!

Hello "bkstars"
Or should that be Brenda?
My name is Pat, I'm the International Moderator for TPP,welcome to
our great world wide Family at TPP.
Please, grab a cyber coffee and a chair and sit and visit with us.
You are welcome to post a request for a private chat with someone, no
problems with that at all, however, we feel that an open forum such
as you will see here, is a great way to get feedback, ideas, hope and
some fun too, from the maximum number of people. Why hide away and
chat woth just one when you can sit and chat with many, many people
with exactly the same health issues you have and some that have most
or many of them also.
If you are one of the lucky ones that has someone close that takes
care of you then you and that person can get the support of others in
that situation. Very often, care givers find themselves either
totally exausted or just tired, and this is the ideal place to just
HOWL AT THE MOON if that is what is needed. You, or your care giver
or family members may want to vent or have the urge to punch a
punchbag, then here is the very place. We have a cyber punchbag too,
it's name is ME!
Just check some of the post's and you will se how terrible a member
named Lisa and another named Jeannine are to me. they take out all
their frustrations on me, just watch, you'll see!
I get the impression that you may have met Jac somewhere else, if so
then come and chat with Jac, as Jac lives in the UK and is a bit of a
night owl, just like me, only I lurk in Ireland, you will probaly
find Jac sitting, like you maybe, in the shadows waiting to have a
little chat with you or someone else.
Meanwhile, I wish you good health, as pain free a life as possible
and I look forward to seing your story on TPP, so, for now,
God bless you and keep you safe and well,
Pat

i did when i first diagnosed...but not recently..alot more problems came along
later...out of the blue...if u dont mind..is it hereditary...im in my 30s and
trying to find someone w/ the same problem as me...let me know...thanxs
shania_twit <shania_twit@...
Man oh man forced out of lurking and skulking around by Pat....and
had to bore eveyone with my story.......
I have a quick question for everyone...now that I am out of the panc.
closet..Does anyone experience heart palpitations along with this
disease? Is there any connection?
Pat** Once again I just love your posts...what a personality!
Warmest wishes to all
Patricia

I came to USA with many expectations, I graduate as an Architect in
Colombia and one day I just move to AMERICA!!!! yea!!! I know it was
crazy, but I love adventure It hasn't been easy but I am happy. I
love my work, my friends and my life, my home, the only think I never
expect it was to get sick, I was the healthiest person in the world,
I never got a cold, that's why is so difficult to accept my new
limitations.
I talk with my parents yesterday, it was difficult , I love them but
I can't run away from my life, like all of you say, I have to make my
life with my health problem not my health make my life, I have to
learn how to live with this problem.
Today I have more pain and more nauseous, I visit the doctor and
tomorrow I have a MRCP, she wants to see how are the ducts and the
pancreas. we will see.
Jan. thanks for your support and your words you are an inspiration
for me..
Pat & G.G hope you are felling better today
Besos... Ale

Hi Everyone,
Man oh man forced out of lurking and skulking around by Pat....and
had to bore eveyone with my story.......
I have a quick question for everyone...now that I am out of the panc.
closet..Does anyone experience heart palpitations along with this
disease? Is there any connection?
Pat** Once again I just love your posts...what a personality!
Warmest wishes to all
Patricia

Hello Dear, sweet, caring, loving Jeannine,
I HATE YOU!
AND I DON'T LIKE YOU EITHER!
DID I TELL YOU THAT I MORE THAN HATE YOU?
WELL, JUST IN CASE I DID NOT, THEN I LOATH YOU!
STOP PICKING ON A POOR SICK PERSON WITH POOR EYESIGHT TO BEGIN WITH
THAT IS TAKING ALL SORTS OF AWFUL AND TOXIC MEDICATIONS AND OPIOD
BASED, DON'T CORERECT ME IF IT SHOULD HAVE BEEN OPIATE OK?
BASED MEDICATIONS THAT CAUSE CONFUSION EVEN FOR SMART ASSED PEOPLE
LIKE YOU WITH NOTHING BETTER TO DO THAN FIND THE ERRORS IN OTHER
PEOPLE POSTS!
I HAD TO STOP JUST THEN TO TAKE A BREATH,THAT'S ANOTHER THING, I AM
NOT GETTING MY USUAL AMOUNT OF OXYGENE WHEN I BREATH BECAUSE MY SINUS
CAVITIES ARE BLOCKWED WITH WHAT LISA SAID WAS A WHEAT ALLERGY AND YOU
AGREED WITH HER TOO SO THERE.
SHUT UP JEANNINE, I HATE YOU!
Your best friend,
Pat
;¬}
BTW
I found that pretty envigorating, must do it again soon!
And I apologise to you and to Patricia also, but my error has brought
her into the open having lurked for ages now, right Patricia?
You know, if I had thought of that last point, I could have said that
I had not made any error but that I was using a ruse to gain a new
member!!!
But, it just goes to show how honest I am, plus my head qwas spinning
from all that lovely praise!!!

I am also a redhead!!!!! I was born with strawberry blond hair, but
unfortunately wasn't able to keep...still have the red tent to my
hair which i claim is my stolen red hair trying to show itself
again! And it seems like a definate fact...what u said about
anesthesia...FOR ANYTHING...can't stand to hurt or even think about
how bad it does hurt!!!

Hi ya!! you made it then. you will enjoy this group,and find out so
much info,will catch you later maybe, enjoyed our chat earlier. best
wishess, Jac. xox

wanting to chat w/ someone w/ same diagnosed . im 30 yrs old. had it
for two yrs...anyone to talk to contact me at bkstars@...
thank you

Here is what Patricia wrote in her first e-mail Pat:
think you might have missed it due to the drugs you are taking ?! :)
Hugs, Jeannine

Hi All,
Just wanted to give everyone a quick introduction......Some of you
may already know me from other message boards...sorry to bore you
with the details.
My panc. problems started with a car accident and blunt force to the
stomache from the steering wheel. I sustained many injuries....plus
a psuedo cyst or shall I say a grapevine of psuedo cysts....had
surgery to have the cyst drained......after having drainage tube
removed 3 months later cyst came back then had my plumbing change so
that the cyst was draining into my deuodenum and into my stomach.
That seemed to fix the problem....(this was in 1984/85 when I was 17
years of age). At the time I was told never in my life to drink
alcohol....never given a reason. For years I did not drink....was
told by a number of doctors that drinking would be no problem. So on
the odd occasion I would indulge myself and have 3 or 4 beers here
and there. In 1994 had what felt like a heart attack.....this
feeling, although less in intensity, lasted almost a year and I felt
generally unwell. Finally went to the doctors had all kinds of test
and was told I was fine. Problem seemed to go away after awhile. At
my sisters wedding 3 years ago had some wine....about 4 glasses, and
since then I have been having problems. Poor digestion, the
inability to eat red meat or high fat foods without a lot of pain.
Constant dull pain in the back on the left side and in the front as
well as left shoulder and neck pain. Sometimes the pain travels
around to the right side. All of my stools float, although I do not
have steatorreah (sp). CT scan has should my panc. is enlarged. My
enzymes are normal however. Doctor refuses to believe it could be my
panc. but with my history I do not see what else it could be. I am
lucky at this point the I can bare the pain....although it is alway
there. I also have just found out that I have an hiatal hernia...not
sure if this causes any trouble...but do get alot of chest pain on
left side that feels like it is right in my heart.....Anyway this is
just an outline on what has been going on. I am 36 year old female
with a 3.5 year old son. Who sure keeps my busy.
I want to Thank you Pat for the warm welcome and look forward to
talking with all of you. This board is the closest and warmest group
of friends I have come across thank you.
Warmest wishes,
Patricia

You know, Ale.... my parents said the same thing aafter my surgery.
They wanted me to go live with them so they could take care of me.
Well.......... my home is with Tom and he is my life now. He knows
me better than the doc's do and i feel that i could heal better being in
his care. My parents only live 1 1/2 hours away and they would only
make more stress for me. My Aunt in Callifornia volunteered to come live
with Tom and me and take care of me, too! Sshe is a very loving lady and
i apppppppreciated her offer but i just wanted to be with Tom.......... and
him alone. No one has seen me as bad as he has......... and the other
family members haven't.... and it would make them upset. When you're
feeling badly............ the last thing you need is people hovering over
you asking what they can do to help? I don't feel comfortable with
that situation. I can be .........."just me" with Tom and he understands
me. I know good days are ahead for you, sweetie. It's just going to take
some time.... i'm afraid. Many months perhaps. It's ok, though.
You're in good hands. All of us here aat TPP have great experience with
this disease and we probably know alot more about how to heal ourselves than
the docs. You take your time in making any decisions. You have lots of
time to do so. Time heals... and so does love. THere's no need to
thanks, here......... i just wish i could help you more. Stay away from
carbonated drinks of any kind. Water is the best........ even flavored
water. Green tea is oaded with antioxidents and they are great healers. Eat
small meals........ 3-4 bites at a time and eat very slowly.... very slowly.
This will ease your system back to where it should be. I drink Boost.......
a nutritional suppliment that is loaded with vitamins and chocolate is my
favorite. Listen to your heart in making decisions. You came here with a
dream........... and that dream can still be with you. You will figure out
a way to make it happen! Hold on to your dreams, my friend..... for
they are yours for the asking. I'm blind and deaf on my right side of my
face due to antibiotics they over dosed me on and i can still write and draw
just as well with one eye as i can with 2. I believe with ALL my heart that
yoou will have your dreams.... just ask God to help you. You have
guardian angels to guide you to your dreams, too. Believe in yourself and
hold on to your faith. Embrace the good days and take it easy when things
are not so good. Rest and drink lots of waaater and soup. I wish i
lived closer to help you get through the rough days.... but i'm only a post
away to talk. ( aaabout anything you want) Think good thoughts and
turn the negative into positive. I hope to hear from you again and
again........ my friend. and i'm happpy you are with all
of us here. GOd bless you, Ale. love, jan xox....... another candle
is lit for you.

Hello ED,
Thank you for your kind words, they are, I assure you, very much
appreciated.
To be honest, I am still very much under the weather, annoyingly so
in fact.
While I am no stranger to all the pain involved, and the other
symptoms such as "toilet issues" and dietary restrictions and so on,
I cannot remember feeling such "corrosive" tiredness and fatigue.
Earlier in life I lived a robust outdoor lifestyle and was well used
to pushing myself to the limits, in controlled circumstances of
course. I can well remember feeling so exausted that at times I
really felt I had gone too far, and probably did too!
But never, ever have I felt so totally "depleted", if that's an
appropriate word, thats how I feel regardless anyway.
In my usual manner, I have made light of the way my family,
especially my wife, has insisted that I should take it very, very
easy. Well Ed, and everyone else that reads this, I no longer need
my wife and family to pressure me to take it easy, I have no choice.
My body is currently dictating my level of activity, it will no
longer co-operate with me, it is dictating my pace and my activity
too, and you can be sure that my level of activity is virtually nil
at this point.
Once again Ed, thank you for your kind words and concerns.
Pat

Hello Patricia,
Welcome to our Family! Now thatyou have posted please, continue to do
so, your imput will be greatly appreciated I assure you.
As the International Moderator, I immediately see you as one of my
"charges", and I take special joy when you come and visit. It really
makes little difference to the Board where the individual members
reside, but Canadians are almost always seen as "locals" by our US
Family members. But we know different Patricia, don't we!!
I am charmed by your kind words, even though I do not feel they are
merited, I believe that I simply speak as I feel and any praise for
my words should be directed to God, for it is He who blessed me with
whatever insight I amable to bring to my fellow sufferers. There is
no great secret to giving words of hope and comfort, simply open your
heart and mind to the positive and the good that is all around us.
Unfortunatly, we are bombarded by such negativity and examples of the
worst side of human nature by the popular media on frightening scale
and on a daily basis too.
However, I accept your words of praise as graciously as I can.
Thank you very much indeed.
Patricia, you did not say what caused your trauma, but it was
probably an accident, certainly, I hope it was not a deliberate act
of violence aimed at you specifically, it is sad that all to often
people are attacked in simply awful ways.
Actually, I would be grateful if you would post the details of your
trauma, but only if it will not distress you to do so.
It is not for any "salacious" or sensationalist reasons that i ask
this of you, rather it is because we seldom hear of Pancreatitis by
Trauma as it were, most sufferers develope it either as a result of
genetic or environmental reasons. In fact, I believe you are the
first person that I have spoken with who developed Pancreatic disease
arising from a trauma. At least give some thought to posting your
story, or the parts you can comfortably share.
Needless to say, I am pleased beyond words that you are still
relatively chronic and severely pain free. I assure you that I will
offer prayers that you remain so for a very long timeto come.
It would be a great gift from God if your condition remained exactly
as it is.
Please do not dwell on your understandable concerns for the future,
it is a pointless exercise at best. Throughout my life I have lived
with the belief that "WhAT IS FOR YOU, WILL NOT PASS YOU BY", this is
not a fatalistic outlook as some would contend. I believe it is a
realistic outlook and, if nothing else, it saves a freat deal of time
otherwise spent worrying and wondering about the inevitable!!!
I'm sure that you will be around for a very long time to be with your
young child, and that you will long enjoy sufficient good health to
share in his growing experiences.
Patricia, I thank you again for your kind words, meanwhile, may
God Bless you and your family and keep you all safe and well.
Pat
International Moderator.

Hi Jerry,
I glad that Carolina made it through all the Play-off games.
Good Luck in the Super Bowl on Feb. 1st.
Take Care,
Louie in WV

Hi Pat,
It's nice to see that you are allowed Playtime again. You didn't say how
you are feeling. I hope now that your online again, you are felling better.
Take it easy and don't over due it.
Take Care,
Louie in WV

Lisa...
You have never spoken truer words....My sister is the one who told me
she thought perhaps my persistent (11 months at that time, 14 months
now!!)sinus infection might be related to some kind of food allergy...
and the common denominator turned out to be WHEAT ! Every single
time I eat something with wheat in it my sinuses fill up unbelievably
quickly...within 30 minutes...it's SO obvious ! The longer I can go
without eating wheat the longer I can breathe freely....it is SO
worth it...but my goodness wheat is in almost EVERYTHING ! Cream of
whatever soups, gravy packets, taco and chili mixes...and of course
nearly every single cereal ! It is so difficult to find food that
doesn't have wheat...but we DO have a store called "Whole Foods" that
sells all kind of things made "wheat-free"....and I have managed to
find a few snack items that I can enjoy. One of the "famous" actors
who does "food" has wheat free pretzels...can't tell much difference.
They are perhaps a bit drier...I just had help: his name is Paul
Newman.
It is worth it though to be able to breathe !
Hugs, Jeannine

I am amazed that they didn't contact the Hazmat team for an envelope
filled with a "powdery substance". (Ten years ago, they would have
thought it was drugs). LOL
Eileen

Ale,
It is hard to come to terms with the realization that you have a chronic
illness. You have every right to grieve for what you have lost. It is not
easy. I am 42, 12 years older than you and it still is not easy. For me,
the hardest hit was when I was diagnosed with autoimmune liver disease. It
was such a shock as my GI kept saying my liver was 'perfectly healthy'. The
diagnosis of CP was not such a shock. I pretty much knew I had cp even
though my previous GI kept saying I didn't. I mean, I'd had one attack
after another, I had developed diabetes only 3 months after the attacks
returned, yet my GI was insistent my pancreas was also 'perfectly healthy'.
Anyway, it is hard coming to grips with it all. However, please do not
think your life is over. Your life will be different, but there is still
every possibility that things may improve to some degree. I don't know the
specifics of your situation, but in all likelihood, you will have some very
good days, some very bad days and many days that fall in between. Allow
yourself time to grieve and accept what you must, but I promise you, your
life is not over by any means.
Take care and know that we are here to listen to you and give you a shoulder
to lean on.
Karen W

Hi everyone,
I will be leaving for New Orleans tomorrow and wil be unable to
post/read the messages from the group. I should be gone until this
weekend unless matters dictate that I remain longer. I have changed
my status within the group so that I will no longer receive daily
email messages from the group, so this should alleviate my problem of
getting "bounced" due to a full mailbox.
Once again, thanks to everyone who has offered their prayers and
support to me, my dad, and the rest of the members of my family. You
are all truly good people and a wonderful addition to my "family".
Andre'

Pat,
I have missed you so much. I have over a hundred e-mails and I just can't deal
with it right now, but I scanned through them until I came upon your post. I
was the one that posted before about fatty liver. According to the dr. this is
common in those of us that are overweight. The one thing I was told to was to
take vitamin E three times a day. This is supposed to help with it.
I bet you drained your car battery just so you could have the laptop for the day
while Lily was at work.
I am sorry your infection is getting worse. A little hint. Stop eating
anything with wheat in it for a fews days. My mother had the never ending sinus
infection and after 6 different antibiotics, I read here on the board that wheat
can cause this. So I told my mother to stop eating wheat for a few days and
within 3 days she was much, much better. Hey, It's worth a try right? Please
get some rest and don't overdue it okay.
Lisa
Simi Valley, CA

Hello Lisa,
My "Saucy" Simi Valley sunshine!
This afternoon the posty called with some overdue packages and
another envelope. I didn't even think to look at the label on the
envelope at first. however, Lily picked it up and dropped it while
screaming!
I asked her what the hell was wrong and she said that the envelope
felt all "squishy" and soft. I had no idea what it could be, so I
picked it up very gingerly and it did feel strange for an envelope.
then I noticed the green customs declaration and the US postal mark,
and suddenly it all seemed totally clear to me;
Lisa had posted the RAT to me!!! She had finally seen the light and
put RATSO in the post so he would arrive at my house already
marinated and ready for my dof to chow down on. Terriffic, at last
the damn rat was history!!!!!
I eagerly tore open the envelope, expecting to find CREAM OF RATSO
but DISSAPOINTMENT!! NO RATSO!! I sat down and cried.
I cried bitter tears of dissapointment that the RAT LIVES ON.
BUT FOR HOW LONG? AHH, WATCH THIS SPACE.
Lisa, thank you so, so much for your kind thoughts and for going to
all the trouble of getting to the shops and then the post office, and
you did this during a very bad weekend for yourself. i recall that
that was the weekend that you were very stressed out and not wanting
even the two boys coming near to you.
I could not be more pleased if it had been a present of gold coins.
Something like this, something simple but requiring such enormous
self sacrifice is what makes it so precious.
Lily and I laughed our heads off later at the memory of her taking
the envelope, feeling the "squishy" contents and immediately doing
this strange two feet shuffle and screaming as she threw the packet
across the room. I'm laughing to the point of tears as i can see her
in my minds eye, standing in the kitchen "hopping" from one foot to
the other, standing on the same spot and squeeling (SP?), CRAZY!
And she still cannot think what she believed it was.
Thank you for such a nice gift, but thank you even more for the gift
of laughter and fun at a time when I certainly needed it.
Thank you Lisa, and well done you!
BTW
For all of you wondering what this is all about, almost a week ago
now, Lisa, Jerry, Jeannine, that I can remember for certain, forgive
me anyone I left out, OH'' , I just remembered, Reeann was in there
too, were talking about FOOD, what else you may ask, and the subject
of "Country Sauce" came up. they all were banging on about how
delicious it was, and I joked that they were very unfair to me
because I had never tasted this JOY they were in love with, and
moreover, I never would.
Would you believe that LISA went right out and bought me a packet of
McCormack's Country Gravy and posted it straight off!!
Now I'm waiting for the chicken and the beef to come later.
AND, AND, I am very sad that I will never get to drive DODGE VIPER,
so I will be watching the post even more for the next few weeks!
;¬} ;¬} ;¬} ;¬}
www.liverdoctor.com/Section4/fattyliver.asp

Jan
thanks ....you are correct I can make it, I will find the way to make
my dreams, I was trying to be strong all this days, my parents are
visiting since I got sick in December so I didn't want them to see me
sad or to sick, but yesterday, I was sick and everything went wrong,
it was a bad day
I went home and rest, I hate to see my parent getting worried, they
are telling me to go home with them , but here is my home and like
Pat say I have to take my time and think what is best for me.
I'm felling better today, still with pain but I'm not alone I have
you. my new family.
thanks for your help, thanks for understand, hope you are having a
good day.
thanks....
besos..Ale

Pat...
thanks .... I love you words, tears came out and my soul fells better.
I know I can make it, I know God is with me, I know I'm not alone...
thanks for reminding me who I'm, and how strong I can be, I just need
some time to cry but I will stand up and do what I have to do...
thanks one more time
Besos
Ale

ReeAnn...this is SOOOO funny...I too have a BLACK Cocker !!! You
don't really see too many of them. His name is Skyler (AKC name is
Ebony Skyler). Ours is as squirrelly as they come ! Aalso has his own
toy box and gets totally stressed when we clean up the room and put
them away...and is unforgiving when we don't give him rides ! LOVES
to go fro car rides...even if all I ma doing is moving cars around in
the driveway !!! :):) Aren't they just marvelous !?!?! He just
truned 12 a month ago but somedays you just wouldn't know it...he
does have cataracts and some days he's a little creaky with his old
bones but other days he runs around like he's a pup ! I am totally
crazy about this silly boy !
Hugs, Jeannine
doesn't have the slightest idea that she is a dog. She loves using
pillows, the more the better. Has her own toy bin - now if I could
just teach her to pickuyp her toys. She is poiled as they come, but
so sweet about it. Never makes a mess. Never into anything she
shouldn't have. Always happy to see me when I return home. Gets mad
at me when I can't take her along.

Hi Pat,
We have never spoken.....my name is Patricia...I am from Ontario,
Canada. I have been lurking on this site for months, and participate
in a few of the other web support groups.
I just wanted to let you know what an inspirtation you are. You are
and absolute ANGEL. What a beautiful reply you posted to ALE. Filled
with hope and inspiration, and at a time when you are feeling so
unwell. With this disease, it is so easy to become depressed and ask
yourself why me.....I have asked that many times myself. I am in the
early stages of this disease......I have mild daily pain, which I am
lucky enough not to need any pain medication for. Although I do get
flares of stronger pain from time to time. My pancreatitis was
brought on by blunt tauma from a car accident many years ago. I find
myself constantly worried about the future and how I will be and how
long I will live....mostly because I have a 3.5 year old son that I
cherish and always want to be here for. I do believe in mind over
matter and positive thinking.
I enjoy reading all of your posts.............you, sir, are a very
special man! THANK YOU.
Warmest wishes
Patricia

Thanks G.G.,
sorry my post maked you depress, I know I need some help, I need to
talk, I'm felling really down, I can't see the light. I don't want to
be a sick, I'm tired....
sorry ....normally I'm a really happy person, I love people, music,
parties.. but this days I want to be alone.

Jan, your make the roses seem like weeds!
I had just finished a long p[ost about my doctor visit and I'm
exausted, it really is getting to me just how exausted I am all the
time, right now I just want to go asleep. However, I can't, my
daughter just called and left her son Bradley, he's 10, to stay with
me. School phoned to come get him, he was not too well. he suffers
really badly with migraines, that's awful really, 10 years old and
he's been having the migraines for over 3 years now. His doctor has
given him about every kind of migraine medication there is available
for kids and they only help for a very short time and he's back to
where he started.
I have to hope that he will lie on the bed beside me and fall asleep,
I would hate for him to be awake on his own while I slept.
On the other hand, maybe I would be better to try to stay awake and
then I will surely sleep tonight.
Geez, I'm hitting so many wrong keys that I'm practically typing this
post 3 or 4 times!!
I have to go lie down, I'm sorry Jan, I'll finish this later.
Bye for now
Pat

Hello Everyone,
I had an appointment with my GP or PCP this morning, and I got some
good and some bad news. So what's new about that then?
By the way, as I had not driven my car for some time, my battery was
totally dead this morning when I tried to start it. That meant that
Lily had to drive me to the doctor's office, go leave my car keys to
the auto electricians for him to take the battery to charge it up and
then fit it back for me. Then she had to bring me to get my scrip
filled and it all took so long that she had to leave me her car and
go into work.
Guess what? YEEEE HAAAAAWWW! My laptop is in the trunk of her car!!
Boy, oh boy, isn't' that just dandy, I can catch up on some work
today. Work? This is not work, it's a pleasure, pure and simple.
First of all, I am still "wiped out", that's a silly phrase for an
old fogy like me to be using but it just about tells my story in two
words! My 15 month old nephew could put me on my back with a single
blow. We had to park about 3/4 of a block (small blocks here) and
walk to my doctor's office, or clinic, you chose. I have walked
several miles not long ago without feeling so weak. The receptionist
made me a cup of tea, and that caused something of a re-take by some
of the other patients waiting. Usually you would be lucky to get a
chair to sit on, never mind a cup of tea.
It was very nice of her but the reason she gave to Lily for having
done it kind of concerned me. she said she had never seen anyone look
so sickly as I do, that's just the thing to cheer you up on your
first day out in more than a week, especially as I already saw that I
was real pale, but the family were lying out of kindness in saying I
did not look too bad. I do look bad, period!
Good news is that my lung infection has not spread (I thought it had)
but the bad side is that it has not cleared so far, plus she believes
there is some inflammation that was not there before, great.
She did a scrip for two antibiotics (didn't check the name) to try to
knock it for six once and for all. She did warn me that they would
probably leave even more weak for awhile as they will almost switch
of my immune system, or something like that. If they affect me even
partially as bad as the two that they give with another drug to kill
of the H-Pylori bug, then I will be down and out for the rest of my
days for god's sake. Bum deal, that's for sure.
It seems that I also have an infection in my sinus cavities too, I
have long term problems with them anyway, I always suffered from a
really badly blocked up nose. I have the real dry type of blockage; I
never have a "running" sort of nose, no sniffling from me thank God.
She still did not give me anything for the "Pitting Oedema" in my
legs and feet, despite the fact that she is concerned by the size the
left one is.
I tried my best to have her understand that I am really worried about
this swelling, I first noticed my left foot swollen back in early
October, and it's now into the tail end of January and still nothing
being done about the swelling.
My left leg and ankle are now really beyond sore or tender, I now
have really bad pain from above the knee right down into my toes. My
whole leg feels like it has a lightweight "cast" all around it. She
drew more blood and she will have the results on Thursday. The delay
is caused by the PCP's office closing on Wednesday for the ½ day
break, same every week.
She says the bloods may tell her something about the "sweats" and
the "flushing" I am still having, actually, the yare becoming worse
all the time.
I asked her to try to find a reason or something to stop it happening.
Again, we'll see.
My CT scan was not too bad, depending on how you think about things.
My Pancreas is no worse, and for sure, no better!
I have no blockages in any of the major blood vessels through the
abdomen and there does not appear to be any appreciable stenosis in
them, just a tiny amount relevant to my age.
The one worrying thing about the entire scan is that it has now shown
that my liver is "Fatty". What concerns me is that it suggests that
she should undertake some further investigations of my liver. I have
not given much thought to "Fatty Liver" up to this, however, I do
remember someone on the board posting about it, just can't remember
who.
I will have do some research on it today while "SHE WHO MUST BE
OBEYED" is at work and I have my laptop to myself.
Well, believe it or not, I feel like I have gone ten rounds with both
George Forman and Mike Tyson at the same time. As I type I am
fighting a losing battle to keep my eyes open. It's amazing; I
cannot believe that I am so weak and so tired too. I am getting
worried about this now; it is not natural to be like this, at least
not all the time. I am beginning to feel the seats and the tiredness
goes together maybe. I have noticed that when I am struggling to keep
my eyes open, I am usually covered in this cold, clammy sweatiness.
Apart from the concern it causes me, I actually dislike the feeling
of it happening, it makes me feel dirty somehow, despite showering at
least twice a day, sometimes 3
Sorry for rambling on a bit, it seems such along time since I was not
under "starters orders", but don't worry, she will be back cracking
the whip later on!
God bless you all and keep you all safe and well.
Pat

Louie Wrote:
Hi pals,
I was just wondering if anyone has talked to heard from Denise. I was
wondering how she is doing in the hospital? If anyone talks to her,
let her know that I was asking about her. We sure miss hearing from her.
Dear {{{{{{{{{{{{{{{Louie}}}}}}}}}}}}}}}}
Denise has come online since she took her notebook to the hospital with her.
She was also in Chat for a little while Sunday night. She is doing as well as
can be expected with being in the hospital. On some hefty pain meds, so she is
not online all that much. And when she does, she will often dozed off or a
nurse will come in for this or that reason. So we have had limited contact with
Denise since she has entered the hospital.
ReeAnn M. Betts-Morris - VA
CoOwner, ThePancreatitisPlace
434-409-7162

It is a sad day when one finally realizes that the disease we have wil be
with us for all our lives. Don't be mad at God. What God has lead
us to ~~~ God will see us through. I've had CP now for 9-
10yrs nnow......... i forget exactly... but it's hard to realize
this is happening to me! Yes.......... why me? Thinnk of i this
way.......... you could be iin a wheel chair and have no arms or
legs
people that are worse off than we are. and yet they find a way to
smile and survive the best way they can. Try to find the good uin
everything you say and do. Don't give in to the fight............
with this disease you have to fight everyday and in every way. You can do
it! When there's a door closed.......... window is open for you.
Here at TPP we are a;ll family because we all have the same disease. It's
ok to cry and have bad days when all you want to do is nothing but gripe.
And you can do that here with us. We all do it and we all
help each other through the rouuugh times as much as possible. I'm
here for you, Ale. You can still be a mom..... you can adopt a
child. I am adopted and very grateful that someone cared enough to have me
in their lives and give me love. There are answers everywhere youu
look. Turn the negativees into positives. You can do
this.......... i know you can.!!!You are not alone here.......... you
have all of us to love you and understand what you are going through. Talk
all you want,,,,,,,,, i''m here for you. I live in Florida USA
and i'm almost 48 feeling like 148 somedays! Please
write me and we can talk aaabouuut anything you want. i hope to hear
from you soon, sweetie. You're NOT alone. love, jan xox

Oh my gosh! My doctors call me crazy because since they tried the
stent thing, I have also been unable to sleep on my left side, to me
it feels the same, something swollen or poking me from the inside, if
I turn to the right and put a pillow between my knees and under the
lower area of my abdomen, I can kind of get comfortable enough to
sleep. I use an extra soft very old feather pillow, it seems to work
the best, forms to my body and makes it easier to put it where I need
it. Sometimes I even wake up having a hard time breathing deep, I
have to sit up and do deep breathing in the middle of the night, the
pressure drives me crazy. Doc said the sleeping thing was in my
head... now I know I am not the one who's idea is crazy!
Als