My blog

Hey guys,
I got this from one of my lupus boards and thought it applied to
pancreatitis, too. I know many of you probably look better than you feel and
get thoughtless comments from those who don't understand.
Karen
Lupus or any other invisible Illness means many things change,
and a lot of them are invisible. Unlike having cancer or being hurt in an
accident, most people do not understand even a little about Invisible Illness
and its effects, and of those that think they know, many are actually
misinformed. In the spirit of informing those who wish to understand ...
These are the things that I would like you to understand about me before you
judge me...Please understand that being sick doesn't mean I'm not still a
human being. I have to spend most of my day in considerable pain and
exhaustion, and if you visit I probably don't seem like much fun to be with,
but I'm still me stuck inside this body. I still worry about life and work
and my family and friends, and most of the time I'd still like to hear you
talk about yours too. Please understand the difference between "happy" and
"healthy." When you've got the flu you probably feel miserable with it, but
I've been sick for years. I can't be miserable all the time, in fact I work
hard at not being miserable. So if you're talking to me and I sound happy, it
means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain,
or extremely tired, or that I'm getting better, or any of those things.
Please, don't say, "Oh, you're sounding better!". I am not sounding better, I
am sounding happy. If you want to comment on that, you're welcome. Please
understand that being able to stand up for ten minutes, doesn't necessarily
mean that I can stand up for twenty minutes, or an hour. And, just because I
managed to stand up for thirty minutes yesterday doesn't mean that I can do
the same today. With a lot of diseases you're either paralyzed, or you can
move. With this one it gets more confusing. Please repeat the above paragraph
substituting, "Sitting," "walking," "thinking," "being sociable" and so on
... it applies to everything. That's what these illnesses do to you. Please
understand that these illnesses are variable. It's quite possible that one
day I am able to walk to the park and back, while the next day I'll have
trouble getting to the kitchen. Please don't attack me when I'm ill by
saying, "But you did it before!", if you want me to do something then ask if
I can. In a similar vein, I may need to cancel an
invitation at the last minute, if this happens please do not take it
personally. Please understand that "getting out and doing things" does not
make me feel better. Telling me that I need a treadmill, or that I just need
to lose (or gain) weight, get this exercise machine, join this gym, try these
classes ... may frustrate me to tears, and is not correct ... if I was
capable of doing these things, don't you know that I would? I am working with
my doctor and physical therapist and am already doing the exercise and diet
that I am supposed to do. Another statement that hurts is, "You just need to
push yourself more, exercise harder..." Obviously chronic illness deals
directly with muscles, and because our muscles don't repair themselves the
way your muscles do, this does far more damage than good and could result in
recovery time in days or weeks or months from a single activity. Also,
chronic illness may cause secondary depression (wouldn't you get depressed if
you were hurting and exhausted for years on end)! But it is not created by
depression. Please understand that if I say I have to sit down, lie-down,
take these pills now, that I do have to do it right now -- it can't be put
off or forgotten just because I'm out for the day (or whatever). Chronic
Illnesses do not forgive. If you want to suggest a cure to me, don't. It's
not because I don't appreciate the thought, and it's not because I don't want
to get well. It's because I have had almost every single one of my friends
suggest one at one point or another. At first I tried them all, but then I
realized that I was using up so much energy trying things that I was making
myself sicker, not better. If there was something that cured, or even helped,
we'd know about it. If after reading that, you still want to suggest a cure,
then do it, but don't expect me to rush out and try it. I'll take what you
said and discuss it with my doctor. In many ways I depend on you -- people
who are not sick - I need you to visit me when I am too sick to go out...
Sometimes I need you help me with the shopping, cooking or cleaning. I may
need you to take me to the doctor, or to the physical therapist. I need you
on a different level too ...you're my link to the outsideworld... if you
don't come to visit me, then I might not get to see you ... and, as
much as it's possible, I need you to understand me.
God bless
Nahum 1:7 NIV - The Lord is good, a refuge in times of trouble. He cares for
those who trust in Him

Hi ReeAnn,
I finally learned how to post. I have just been lurking for a while
and posted a long time ago. I had an attack of acute pancreatitis at
the end of September and have been having problems since. I finally
get to see a GI in Janauary so I have a lot of the same questions that
you do. I did notice that you talked alot about fatigue especially
after eating. I have that problem too. I kept thinking it was
because of work, school and a 5 and 2 yo, but maybe it isn't. I will
definitely try and keep more careful tabs on if what I eat cause more
tiredness. Sorry I can't help you with any more of your questins.
I remember you saying you live in Fort Worth. I lived there for 13
years. Moved there right after college. We moved to the Detroit area
2 years ago. I am really missing the close friends I developed there.
Especially now!!
If I learn anything from my GI next month I will post about it. I'm
supposed to have a HIDA scan on Wednesday and an ultrasound on one of
my breast the next week! One more thing to worry about!
Take care,
Mona

Dear Msjoemary,
Hi! Welcome to The Pancreatitis Support Network! :-) So sorry to hear of
another person afflicted with this bad, life changing disease. I read your
post on pancreatitis cures. I have had chronic pancreatitis since 1992, and
have been through most of the conventional treatments including ERCPs with
stent placements, and sphincterotomies, and three pancreatic surgeries, and
as far as my knowlege goes, there is nothing available that I've read, or
heard of from any medical professional that is called a "cure" for c. panc.
I didn't, and don't drink alchohol, but I have had c. pancreatitis
induced, type one, insulin dependent diabetes since early 1997. My disease
was caused by a birth defect called pancreas divism, or divided pancreas
which involves the delecate pancreatic ducts I follow all of the recommended
diet changes too low fat, low cholesterol foods. I had the Whipple surgery
in November because my pancreas was producing stones at a prodigeous rate
which kept me on a short leash to the doctor, and hospital, for accute
attacks which I still have every few months. In my case the duodenum has
been removed. I live with pain every day of my life, and nausea, vomiting,
and intestinal, digestive problems much of the time. I have come to accept,
but not be physically comfortable with this condition with the aid of
strong, narcotic pain medications, and pancreatic enzyme supplements with
everything that I eat or drink. It is, plainly speaking, simply a part of
my life that is unfortunate, but part of who I am.
Some people have as a last resort in search for relief had a total
pancreotectomy with excellent results. Those who have had this surgery are
better equipped to tell you about their results. I think that they haven't
been doing these for an attempt at symptom relief for a great number of
years, so the long term results have yet to be seen to the best of my
knowledge. Since I am a diabetic already this treatment may not be suitable
for me. I don't know for sure yet, but it seems to me such a drastic measure
that I haven't given long, serious consideration. I'm sorry, that I don't
have any other information to report to you, but there are 160 + pancreatic
patients on this network, so you may learn something that I'm not currently
aware of. Again, I am sorry that you suffer from this terrible disease, and
I wish you the best on finding out any further information, and finding some
relief. We are all different, and what works for one indivdual's symptoms
may not for another. There is a lot of information on pancreatitis on the
internet, so keep looking. One site to check for a lot of pancreatic related
info. is The Medical University of South Carolina's Digestive Disease
Center's web site. I'm sorry, but I don't have the address right now, I've
misplaced it, but someone else here surely has it, so ask around, or search
the web maybe under MUSC.EDU, or .COM.
Again, I welcome you to the Panc. Support Network, and do hope to hear
from you again!
Your New Pancreatitis Partner,
Henry

I have had seven attacks of pancreatitis in a one year period, i do
not drink alchol nor do i have diabetes. These attacks started about
six months after gall bladder removal, i am on a very low fat diet
yet the longest period without an attack has been four months, how do
any of you deal with this. Looking for any sugestions that may help
me, I think that maybe they are coming on because of duodenum
diverticulitis if someone can share info it will be appreciated.

Hi Crystal,
We are all here to give support whether it's emotional or physical needs.
You do not need to apologize and please don't stop posting. We all want to
hear from you and know how you are doing.
Hugs & Prayers
Carole

Hi, Diane.
Yes, it was through three rather small holes. The pain is up a bit
tonight, but not too bad. I had to go to San Francisco (about an hour
to the north of my home) today for an evaluation on a hearing loss
related to work. It was time critical, so could not be put off. I
think the increase in pain is due to this adventure so soon after
surgery. The claims manager did arange for a car and driver, so I
just had to ride up and back. Looks like my claim will be honored.
So, bifocals, a hearing aid and no gallbladder. Hope I don't continue
to fall apart at this rate.
You have a grand Christmas, as well.
Mike.

Dear Crystal,
Who told you that it was offensive to post about the emotional aspects
of your disease?
This is THE place to do that! You keep on posting all that you are going
through this is The Pancreas SUPPORT Network. Please don't go away! You are
welcome to discuss ALL aspects of how this disease has affected your life.
It's not just a physical disease. It makes most people feel depressed to be
chronically ill. I've been down in the dumps plenty of times, and if I feel
as bad as you are feeling emotionally, I'll certainly post it here myself. I
KNOW that like Tull said, Karyn, the founder, and president of this
organization would agree 100%. Keep letting us know how you are physically,
and emotionally my friend! I'm here for you anytime!
Your Pancreatitis Friend,
Henry

Hi all,
I just wanted to wish you each and every one a very peaceful and
blessed holiday. Enjoy each minute with family and friends. I will
get back next Wednesday and will catch up then.
Be well all,
Christine

Hi ReeAnne
I'm so sorry that you didn't receive any answers to your questions.
I
know that Karyn has been having a particularly hard time the past
several days and has not been able to be on the computer much. Since
I'm not a "patient", but just a "caregiver", I generally don't feel
qualified to answer some of these "what has your experience been"
questions. But I'll do my best to answer some of your questions by
what I THINK I remember Karyn going through.
I remember Karyn having a "mixed reaction" to finally getting a
diagnosis like this. Relieved to finally have a "definitive answer"
to her symptoms so that she felt "validated" in some way; and
very, very frightened about what it all would mean for her future.
I'm sure most folks on this list can relate to those emotions.
I'm afraid I have no knowledge to comment on this. I know several
others on the list seem to have an association with lupus and
pancreatitis, but I don't know any more about what that relationship
might be, or really even if lupus is considered an "auto-immune"
system disorder.
That all is good news! There are some "cancer marker" blood tests
they sometimes use to detect cancer, but usually any positive results
from those need to be confirmed by direct tissue exam anyway.
Karyn has also had to do that with the Creon. I think she prefers
the
Creon because she has a little more "lee-way" as to how soon before
eating she has to take it, etc, since it's in a capsule form with
"tiny little time pills".
I don't remember Karyn ever having the symptom you reported of
extreme
drowsiness directly related to eating. Her drowsiness was pretty
directly related to the combination of pain medicines she takes
(neurontin, flexaril, kadian, methadone, baclofen, pluse the Fentanyl
patches, ACTIQ lozenges, and morphine IR for break-through pain).
She
recently started taking dextrostat (sp?) to help keep her alert
during
the day, and that seems to be helping that condition immensely.
She also takes a multi-vitamin, along with extra vitamin-C, selenium,
and chromium picconalate, and also borage oil capsules for essential
fatty acids. Some of these help promote the function of the
pancreas,
and the rest were as a guard against malabsorption.
Karyn doesn't have regular visits with her GI at this point. She's
no
longer on tpn, and the only routine thing her GI does now is write
the
prescription for Creon. She has monthly appointments with her pain
management doctor and her PCP.
I think most everyone on this list can relate to that as well. In
fact, the recent thread about how DIFFICULT it is to have to accept
the fact that one's life and lifestyle changes dramatically with this
condition attests to that.
My understanding is that once you have pancreatitis, the treatment is
based on the course that the disease takes (which varies from person
to person). It may well be that the "course it takes" is dependent
on
the original cause, but at the point of diagnosis, it seems to be a
"moot point", except that a lot of patients seem to have a need to
know definitively. I assume it's because it may help them try and
answer or come to terms with the "why me" question. Usually the
problem manifests itself because the ducts are blocked (stones and/or
sludge), or there are narrowing/strictures to prevent the juices from
flowing freely through the common bile duct into the duodenum. In
those cases, ERCP seems to be the treatment of choice, since they can
do so much - remove stones, place stents to get around the
strictures,
slit open the "sphincter of oddi" to allow for freer flow, etc.
There are different surgeries that may be indicated to correct
different conditions like "divisum". If the pancreas is calcified to
the point where either the head or the tail is pretty much a "solid
stone", resection surgeries (like Whipple, Peustow, etc) are used to
remove that part of the pancreas.
The other diagnostic tests used to look at the pancreas, but not
directly "intervene", are the MRCP and CT SCAN.
The answer to that is rather subjective. My understanding is that
the
damage done to the pancreas at the point that it is termed "chronic"
(which I equate with "calcifying") is irreversible. BUT, we do know
some patients that seem to "get better" in terms of being able to
function, albeit usually to a lesser degree/capacity than before,
with
the aid of the various surgeries and pain management treatments.
There is also the thinking that eventually, after the pancreas "burns
itself out" totally, some of its complicating symptoms, mainly the
associated pain, goes away, or at least lessens. Of course, at that
point the major complication is that the patient becomes a pretty
"brittle" diabetic (difficult to control, since neither insulin nor
glucagon is being produced). That's the reason for the interest in
doing the "auto-islet cell" transplant procedure like Shirley is
having. They can save the islet cells that produce the insulin by
injecting them into the liver, and then remove the pancreas.
I think Karyn still goes through periods/times when her pancreas
"flares up", and usually that means she needs more PRN pain
medications for break-through pain. Sometimes it seems to be related
to eating, sometimes to stress, sometimes to other physical
conditions - it's really pretty unpredictable. The GOOD thing, at
this point, is that she has found a pain management regimine that
works pretty well - at least it has kept her out of the ER for the
most part!
That's a new term for me. I'll have to leave that to some of the
others.
That's pretty classic pancreatitis symptoms - the digestive juices
are
not getting to where they need to be, so the body is unable to digest
the fat (hardest thing to digest), so it passes on through. That's
why it's important to limit your fat intake in general, and figure
out
what dosage of the oral enzymes (pancrease/Creon/Viokase, etc) works
best for you.
Karyn has wound up in the hospital/ER for a variety of reasons, such
as the excruciating pain from the attacks (prior to having an
adequate
pain management regimine in place); dehydration/electrolyte imbalance
from not being able to take in fluids; and line infections when she
had PICC or Central lines inserted for TPN.
We (Karyn and I) don't know anyone personally. There are several
"testimonials" to this procedure out on the web. I think Karyn has
several of them linked in the "links" section of the egroups website.
Most of them at least have e-mail addresses so you can contact the
person directly if you like. To my understanding, it's still a
relatively "new" procedure, and there have not yet been too many
"long
term" studies done (i.e., how are patients doing after 10 years? 20
years? etc) But of course the early results certainly sound very
hopeful and promising.
This is a pretty sticky issue as well. I don't know about life
insurance, but I do know Karyn had some problems at one point when
she
changed jobs, and/or her employer changed insurance plans, and the
new
health insurance carrier had a "pre-existing condition" clause, which
means if you have already been diagnosed with some condition, you
won't be covered under the new insurance plan for complications
from that condition for some period of time (I think 6 months is
typical). Most of the "better" insurance plans don't have that
pre-existing condition clause, but enough of them still do to make it
something you need to be aware of and look into.
The human body seems to be a remarkably resilient machine, and can
compensate for lots of seemingly overwhelming conditions. The
condition of pancreatitis is an extremely taxing one for the body,
but
if that's ALL it has to deal with, lots of folks live a long time
with
it ("normal" life expectancies). However, the disease can cause
other
complications, and can start putting a "drain" on other organs. The
most directly related organ seems to be the liver, which is yet
another reason why alcohol comsumption is such a big no-no. You are
right about diabetes and its complications being the #1 thing to keep
on top of, which is why it is so important to keep monitoring your
blood sugars. As Karyn keeps saying, that's the ONE thing about this
condition that you DO have some control over, and that you can do
something about.
Again, apologies for not jumping in sooner. I think these are
important questions and issues. As always, we have to remember that
none of us are doctors, and so cannot pretend to be in any kind of
position to give any real medical information/advice. Just share our
common strength and hope through our experiences.
... AND to that!
Cheers,
--Tull

Hi Mike,
glad to have you back on board. I am going out of town, so I won't
be around for a few days. but I wanted to get your big WELCOME in
before I leave. Have a peaceful holiday.
Be well,
Christine

Hey Henry,
How's that old job going? Are you going to take some time off for
Christmas? Or are you so excited you are going to work right
through? :-) I know you must be having a ton of fun.
Getting off the tpn at this point is a pipe dream. Doc wants me off
of it. That is her whole focus and she is not hearing me. I had a
long talk with my nurse this morning and she helped me to refocus
and not get so tied up with the emotional issues.
How on earth can I do without tpn at this point? Doc says if I do
clear liquids (like a popsicle) with pain meds ONCE a day-once, not
even three times, like it would be meals or something, then she would
take me off it. I only have two questions about that. One, how
would I take in enough liquids to hydrate me? and two, how would I
take in enough calories to nourish me? My nurse said this morning
that was absurd. But I am not supposed to quote her on it :-)
Take this week for instance. Monday I went to U of M. I was doing
pretty good because I hadn't eaten anything in a few days. Tuesday I
went to work and made some tea. I figured I would just have to plow
through this thing. I got down a few sips and went home sick. By
nightfall my stomach hurt so bad I couldn't even touch it without
pain. There is something going on here that we are not addressing.
I am not sure if it the duct that is twisted or something else, but
we are missing it.
My nurse told me to go to Omaha-we leave tomorrow for four days-and
not worry about what the doc says. She gave me permission to not
worry about eating for those days. She said we could deal with it
next week when I get back. How I needed to hear that! She really
validated me-I was so worried that I was out in left field, but she
said not at all-that I had some very valid points. And she told me
to quit taking the trazadone.........yeah! Doc increased my dosage
and I have woken up with swollen hands and face every day since. I
even got a rash from it, but doc wanted me to stay on it. So I asked
the nurse if I could quit it and she said she would...............so
I have some good things to go to Omaha with..........I am going to
have fun and not worry at all about the panic of trying to eat
anything. It's like I told her-I feel relatively human until I try
to eat something.........and then it is sheer misery. So we will see.
Anyway, this will be my last post for a whole week-I think I will go
into withdrawal! And it will take me a few days to catch up when I
get back. We get back Tues and drive directly to Indiana where I
have my appt. with Dr. Sherman on Wednesday. So we will see what he
says.....
So, my friend, have a wonderful and relaxing holiday. Even though I
won't be online, you will still be in my prayers. Heal well, my
friend. Talk to you when I return.
Christine
Sorry to ramble :-(

Hello Everyone,
On Tuesday I sent a post with a bunch of questions hoping to help prepare me
for my doctor's visit yesterday. I was very disappointed not to have
received even one reply.... This is not the first time it has happened
either. If we are going to be a support network for each other, we have got
to try and help one another... not put others on ignore just because the
questions don't deal with emotional/mental issues of this disease.
Yesterday I got the official diagnosis - Chronic Pancreatitis. My GI seems
to think it is because of some auto-immune disorder, but doesn't have a clue
to which one. So far all my blood tests have come back normal. He said
with all the endoscopies, surgeries and ERCP I have had in the last year
there is not much chance of a tumor or cancer. He has told me to play
around with the dosage of Pancrease until I find out what works best for me.
He recommended an A-Z multivitamin and thought that might helps with the
sleepiness after eating. Told him I am changing PCPs and why, he offered to
write a letter of introduction to my new PCP so she knows I am not some drug
addicted nut seeking pain meds.
My next appointment with him is scheduled for the end of February. How
often does everyone see their GIs? Was kind of in the dumps all afternoon
yesterday. Guess I harbored some kind hope against the odds that maybe it
wouldn't be pancreatitis. Now that hope is gone. My boyfriend went with to
the doctor and we sat up late last night just talking about things. It is a
heck of a burden to impose on him. I am so fortunate that he is
understanding and only wanting to help me. Regardless of my health, he
wants to be there for me. I so desperately needed that.......
Well, I have better get going for now. If I don't get to post again before
the holidays, wishing everyone a joyous, minimual pain, happy holidays!!
Lots of Hugs,
ReeAnn

Dear Patricia,
I am having the colonoscopy because I have had polyps removed in the
past few years three times, and I am currently passing blood, and this is a
worry to my G.I. dr. that more polyps may be growing further than the
rectum. In fact she performed a flex sigmoidoscopy on me prior to my recent
Whipple, and removed two benign polyps from the rectal wall. I'm sorry to
hear of your aunt's delayed treatment, and demise. I am quite worried about
my aunt, I have also lost a great aunt about five years ago to the same
cancer which was inoperable. I hope treatments have advanced in time.
There is no question in my layperson's head that this is a hereditary based
condition, which has been documented to run in families who carry the
unfortunate gene.
Thank you for your kind concern over my E.R. visit, but it's no biggie
really. I've been through the routine a thousand times, and now carry a
laminated card with a copy of a letter explaining my condition to whom it
may concern, Henry W. has this Chronic Panc. condition, and please follow
requested treatment protocol for same, ect... With a few glaring exceptions
I've recieved prompt, and appropriate care for a major, or relatively minor,
but excrusiatingly painful accute attack of pancreatitis. The E.R. at MUSC
is an excellent state of the art facility equipped to handle any emergency
care under the sun, but can get chaotic during peak hours such as weekend
DUI accidents, alcohol related domestic violence, ect.
Patricia, I agree with your statement wholeheartedly, "God bless the
good doctors." Ain't that the truth, and it is a blessing, and a comfort to
be cared for in a highly professional manner when one is truly desperately
ill, and suffering greatly. I am feeling some better tonight, besides some
nausea, vomiting, retching, and bloody diarrhea. Yuk!
how are you doing my friend? I haven't had an update from you lately,
and want to know that you are doing reasonably well under the unpleasant
circumstances. Please fill me in on your current condition when you can my
friend. God Bless you and yours this Christmas! :-)
Much,
Henry

Dear Crystal,
I saw where U had tried to raise me on I.M a few times yesterday, but caught me away from the cpt., in the bathroom, or wherever, I'm really sorry that I missed the opportunity to chat with you. Please keep trying me when U see "Pancreaskitten," online, and eventually you'l catch me, both times we missed each other by just a few minutes! Sorry, and look forward to a nice chat my friend! You are in my prayers, and thoughts, keep the ol' chin up, I know what that bad depression is like, and I'm with you!
Your Pancreas Pal,
Henry

Hi Crystal,
Your post hit home for me because I felt the exact same way when I was in
pain 24/7 for a little over a year. Please look into your childrens eyes,
they want you and need you here, for them. It doesn't matter if you're
unable to do all the things the other mothers are. You can still talk to
them and just be with them. Let your children be your strength and you will
get better, don't give up! I'm sure glad I didn't!
What are the ages of your children? I have 4 all together, but I had them in
2 batches, my first batch are 24 and 26 and my second batch are 7 and 9.
Hang in there! Teresa

Dear Mike,
Welcome back!!! It sounds like your surgery went well. How's the pain doing?
Did you have it by scope? So good to see you back...and we are always here
to help whenever we can. Have a Blessed Christmas!!
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Hello everyone,
I just wanted to update you all and thank you for your
prayers and support.
I had a visist with the doc yesterday and he said by
monday he hopes the new anti depressant he put me on
will start working. He has no idea why i have been
getting headaches and my blood pressure was also up so
he wants to see me back in a week. He is really
caring and understanding. He also doesn't know why i
am so depressed because i have been more sick in the
past and delt with it fine. I am going to contuinue
the counseling. My husband was crying at work the
other night i guess i should think more about him and
his feelings. Everyone keeps telling me to hang in
there for my kids but if i was dead then they would
not have the pain of seeing me hurt all the time and
have to suffer cause there mom is sick all the time
and can't do the other things other mom's do with
there children. And my husband he could go to school
and not have to work as much things would be so much
better if i weren't here i honestly believe this.
I was supposed to go to iowa cause my dad is having
surgery friday but they have alot of snow so i might
not get to go i need the time away.
My grandma called this morning and my great uncle died
which makes things worse i just don't know how much
more stress i can take. If anyone would like to call
me e-mail me privately and i will give you my number i
realy need friends and alot of support right now.
Thanks,
Crystal

I am feeling pretty good. Little pain, either from the surgery or
what is going on inside. I am able to eat, which surprised me. I have
been on a very low-fat diet during my wait from the time of my attack
to the surgery. Since I lost 25 of about 50 pounds I can spare, I am
in no hurry to return to my old way of eating, even if I can. I am
amazed at what they were able to do through three little holes in my
belly. I have high hopes that this surgery will prevent further
complications in the future. Thanks for the response. I am glad to be
back.
Mike

Becky

Put me in the mix. You are in my prayers already. Take care Crystal
and please let us know if we can do anything at all.
Christine

Becky-
Man, am I glad you wrote this! I thought I was the only one
struggling so hard with this one. Like you, I am new at this-since
last March. But it has come so far so fast that the changes are
definitely becoming a part of who I am. I don't like this at all. I
used to roller blade and bike and all that jazz. Now I go to work
part time and come home and collapse. I carry the insurance, so that
is an issue. But I do it because I don't like the alternative-you
know, curling up and giving up. So I fight. I go to work, even
though I don't feel well. I can't give up. I mean, this thing has
already changed my life. I won't let it change my mindset. The tpn
is a big enough challenge-What do you do to cope and keep some
semblance of your life?
Be well,
Christine

Hello all,
Its me I chicken out..I got there and they had come in and told me that
they need to run some test before surgery and the ones they had run were
wrong .. so they left the room and all that went through my head is if they
can mess up on that what else can they mess up on,, so I panicked and said
nope this isn't going to happen, I talked to the doctor and he said we can
reschedule so I am going to have it in Jan. I haven't gotton a date yet...I
will let you know when ..thanks all for the support but I will need it
again..
thanks and talk soon
your pancreatis chicken Anna

In a message dated 12/20/00 4:04:30 AM Central Standard Time,
MLockridge01@... writes:

I will close for now. I am off work for about three weeks to recover from
surgery, though I think I will be better much sooner. I have quite a bit of
sick leave, so I thought I might as well be sure I was well before
returning.

hi mike! so glad your surgery went well. hope your recovery is a speedy
one. debbie (ark)

In a message dated 12/20/00 3:09:35 AM Central Standard Time,
Cmolinet55@... writes:

Im just trying to find out if my emails are getting through to the group,
because for some reason, i never see a post of mine appear. sighsssssssss
thank yall....and my love and heart goes out to all of you.
christie in texas

i get them christie. debbie (ark)

Dear Anna,
Thank you for the quick reply before you go in for your surgery. I know
that you are a bit nervous, and that is perfectly natural. You are in good
hands, and from what I know of this procedure they've gotten it down to a
routine surgery although any time you have surgery it is serious, and can be
a trying experience. I didn't realize that you could be home the same night
of the surgery, when I had mine since it was done the older way, it was like
three days, but with the laproscope is less. Anyway, please know that the
group's (family's), prayers are behind you all of the way, and think of that
as you recover. O.K.?
My little E.R. trip thing was what I refer to as a "mini-attack," and
was resolved by the I.V. meds, and rehydration, cooling the pancreas down,
so I recovered quickly even though I've had some more vomiting during the
night, I'll be well soon enough.
Again, a speedy recovery from surgery too you, and when you feel better,
I'll look forward to seeing you back on the board, and instant messenger!
:-) Get well soon my friend, You're the best!
Love & Thoughts,
Henry

Elizabeth,
I am glad that things are going good for you so far and I do know I will
be ok with all the prayers from all of you how can I go wrong...thanks again.
Wishing you all a
pain free day Anna from Michigan

I was with the group some weeks ago. We were using my daughter's computer,
and when she moved out of the house the computer went with her. Now we have a
new Christmas computer, and I am getting back up and running.
I had gallbladder induced pancreatitis a couple of months ago, and just had
my gallbladder out on Monday. So far all has gone well, but I recall the
support of this group and wanted to return. I learned a lot, and met people I
was growing to care for. I wish to return to continue my education and offer
such support as I can.
I plan to read the messages at the eGroup site, since my work schedule allows
a lot of mail to pile up during my work cycle. It is a lot of work catching
up, and I think the site will allow me to manage reading the messages and
responding better.
I will close for now. I am off work for about three weeks to recover from
surgery, though I think I will be better much sooner. I have quite a bit of
sick leave, so I thought I might as well be sure I was well before returning.
Mike Lockridge

Thanks Dawn you are great...I am very glad I have this group..
Wishing you all a
pain free day Anna from Michigan

Dear Anna,
I'm so sorry that we didn't have the chance to instant Message like we
had planned to last night, I was sick, and had to go to the E.R. again,
sowhile I'm feeling better, I'm so sorry I missed a chance to wish you the
best on your surgery. Do you know how many days that you will be in the
hospital? Gosh, I hope that you are well enough to get home for Chriustmas,
and enjoy it with a minimum of pain! I hate spending any time in the
hospital, but at Christmas it's the pits, like a ghost town. I just hope
that you won't be ther then, My earnest prayers are with you as you go into
surgery! God will be with you!
Your Pancreas, and Surgical Pal,
Henry

Im just trying to find out if my emails are getting through to the group,
because for some reason, i never see a post of mine appear. sighsssssssss
thank yall....and my love and heart goes out to all of you.
christie in texas

Hi friends,
I, like Henry, have not posted to you much. I want to reassure you that God
is with you right in the middle of the whole mess. I've heard so many times
that God won't give us more than we can handle...but like others have said,
"I wish He wouldn't trust us so much!" All I can say is hang onto God and
don't let go. Continue to give it all to Him...and trust that He will work
it out in time. He makes no promises of when...just that He will.
Blessings to You Both,
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Crystal,
I understand what you are saying. I think the holidays make the impact this
disease has on us even more evident.There are so many more social things
going on...and many times...we cannot attend. Or we try to go...but then pay
the price the next few days. Are you on an anti-depressant? I have avoided
them up until now...but I think they help. It doesn't make me totally
unaware of all taht this disease does, but somehow its easier to cope with
it all. You might consider it.
Hang in there...you are in our prayers.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Dear Steve,
I'm sorry you and Tammy are going through such rough times. Please
don't be afraid to unload. Knowing your situation helps me as I pray
for you. Even though things aren't making sense, know that God does
care and He knows your needs. He will give you the strength.
I am praying for you and Tammy and your precious children. Take care,
Dawn.

To All of my pancreatis buddies,
I just want to thank you all for your prayers and support for this
surgery, I am going to be going in at 7:30 am so this is going to be my last
post till I am up to getting back on the puter, but I have been talking with
Leon and he is going to up date you all on what happens with me, so I am glad
to know that he is going to be able to inform you all.. please if anyone
hears anything about Shirley I would like to know ..And I hope Christina you
are doing better and you too Elizabeth...and of course all of my buddies..
you guys are the best thanks again .. and I will thank you ahead of time Leon
for taking the time and finding out how I am and letting everyone
know...Thanks Again and you all are in my thoughts and prayers always..I will
miss posting and reading them but I know I will have them here when I get
back...Take care all hugs and kisses
Wishing you all a
pain free day Anna from Michigan

In a message dated 12/19/00 7:43:11 AM Central Standard Time,
pratt4_2001@... writes:

I started on new depression
meds firday although i don't feel they are helping
much but i need to give it more time. I went
yesterday to counseling which i don't think helps but
i am going to go a few more times to see if it will
help.

crystal - yes, you will have to give them more time. they always say that it
takes at least a couple of weeks for them to really kick in. my husband takes
prozac and it seemed like forever before he really got a benefit from them -
but when he did - it was wonderful. i think about and pray for you every day.
just keep thinking about all these people here who have you in their
thoughts and prayers. you are never alone. things are always harder around
the holidays. i promise to try and find out as much information for you
about any assistance that you might be eligible for. keep us posted. love,
debbie (ark)

Hello,
My name is michael Karns and I would like you to change my e-mail address
from mhk60@... to mlkarns@... thank you very much and have a
great day :-)
Michael

Hello Everyone,
Tomorrow is my appointment with my GI - first since he told me unofficially
(not in chart yet-ran into him at work) that I have pancreatitis. I have
lots of questions for him and asking for any suggestions on what
additionally I should be asking. Would like to ask some questions here
first...
Does anyone here get super sleepy right after eating?? At first I thought
my inability to stay awake at my desk was due to all the meds I am on. Well
as an experiement, went 1 week with just taking my enzymes, not taking any
other medication and I still have the same problem. Have noticed though,
that it usually happens right after I eat (within 10 mintues). I just can
not stay awake. If I catnap for 10 mintues or so, then I am okay. Does
anyone know could be causing to sleep like this after eating? Is it a
common symptom of this disease? Have theorized that it might be because my
body has to work so hard to digest food, but not sure if this is right.
Is it true that you have to know the cause of the pancreatitis to
effectively treat it? What kind of tests will they do? The GI said that
the ERCP primarily lets them look at the duct work and not the pancreas
itself. Has anyone ever gotten better from chronic pancreatitis? Do I risk
more acute attacks with it chronic? Been hearing a lot of a vargus (sp?)
nerve lately, anyone know anything about it? What specific tests should I
ask the doctor for? Had all kinds of blood tests done already and the
diagnosis comes from having more than twice the amount of fat I should have
in my stool. Does chronic pancreatitis put you in the hospital (did not go
with the 3 acute attacks)? What surgeries are possible in the search for
proper treatment? What kind of followup schedule should I be on with the GI
- how often should I see him? Should I be checked for pancreatic cancer?
What is the test for this? Besides a low fat diet, no alcohol diet, what
are some other guidelines on what I should/should not be eating? Never did
get the referral to the nutritionist from my PCP... I never followed up
because of his comments and his office never called back with it. Will get
that from the New PCP after the first of the year. Can the pancreas cause
hidden blood in the stool? Does anyone personally know anyone who has had
the islet cell transplant other than our one member who is still in the
hospital?
Does having a diagnosis of pancreatitis affect your ability to get life or
health insurance? I know it is a progressive, noncurable disease. That
means I can expect to get worse as time goes on. What is the life
expectancy once a person gets a diagnosis? I know it will vary from person
to person and depend on how soon they discover it, Can it kill a person or
is it the complications that get us? Beside diabetes, what are some of the
other possibilities?
Thanks Everyone for trying to help answer these questions. Wish I didn't
have to ask... wish you didn't have the answers... but we have to deal
with life as it unfolds. And I for one am glad I can still do that....
that while I have pancreatitis, I still have my ability to think and reason
(which other illnesses can take away..).
Lots of Hugs for Everyone
ReeAnn

In a message dated 12/17/00 11:27:44 PM Central Standard Time,
LenhartROCKO@... writes:

Thank you Karen, but it has been real bad.
Your friends Tam & Steve

Steve,
I am so sorry. I do understand that sometimes things are so bad you just
can't bear to talk about them. Please know that you, Tam, and the kids are
in my prayers for a better tomorrow.
Karen

Hi Crystal,
I'm sorry you aren't feeling any better and wish I could do something to help
you. I don't remember your history with Pancreatitis. When you feel up to
it, would you please update me about your condition? How old are your
children? Hope you get some help from your visit to your doctor. What
medication did he put you on? You have been in my special prayers since your
post and I also put you on our prayer list at church. Please know that we
all care about you and pray that you will feel better soon!
Hugs & Prayers
Carole

Dear Christine,
Hey friend! How are you doing now? I see where you may be able to get
off of the TPN. That's wonderful news! Do you have a target date set or are
you going to take it as it comes?
That really caught my eye because I am trying to get off of TPN again
myself. It's been over a year, and with my Jejunal-tube in place I prefer
feeding myself that way. The beauty of the J-tube is that there is no bulky
bag to carry around and worry about problems with delivery when out of the
house whether traveling, or going to the corner drug store. I also like it
because it is easier to control my diabetes, and there is less trouble with
potential line infection. So far I've had the J-tube in for 6 weeks without
trouble. I hope to hear from you soon and take good care of yourself! :-)
Your Pancreas Pal,
Henry

Dear Steve,
sometimes the words just won't come. Either that or we say something
dumb because we don't know WHAT to say.
I am sorry for all of your heartache. I can't imagine how bad it
must be. If there is anything we can do, especially for the kids,
please please let us know! That is what we are here for.
You will be in my prayers, not only physically, but for peace in your
heart. Take care Steve.
Christine

I live in Toronto, ONTARIO

Dear ReeAnn,
Hi! Thank you for the informative, interesting, update. I am sorry that
you didn't get me on the A.O.L./ I.M. You're right, it had to have been my
father online, and he doesn't understand anything about the I.M., so that's
why you didn't get a response to your query.
The dogs sound wonderful! What a blessing our four legged friends are. I
wish that I could adopt one, and pay you for it, but since I've had to move
back home since losing the mortgage on my own townhouse, after the bills
from my illness, and the loss of my job. My dad is very allergic to dogs,
but I do have one orphaned cat that I take care of in my small garage
apartment. Pets are wonderful medicine, and they bring them around to visit
the patients at my hospital, The Medical University of South Carolina here
in Charleston. During my recovery from my last surgery, they brought the two
dogs, I don't know the breeds, by my room, and they were so friendly, and
cute together that they really brightened my day up then. One dog is HUGE,
and the other tiny, kind of reminds me of the old Mutt and Jeff newspaper
cartoon. :-) The children's hospital at MUSC gets a visit from those two
dogs four days per week, and you can imagine how those poor little sick
chidren respond to them, and the dogs to the kids! :-) It warms the heart to
see the love of the animals towards the sick people.
I'm sorry you lost your dog to old age, so soon after losing your husband.
It's so hard to say goodbye.
How are you feeling healthwise? I hope that you will feel well enough to
enjoy Christmas. I am going in for a colonoscope Friday, seems I have
developed some more polyps in my colon, and have been having some bloody
diarrhea. I can only eat liquids, but still get the diarrhea. My surgeon
removed a five pound mass from a lady's colon last year, so they can really
get out of hand.
Well, I hope that you are well enough, and God Bless.
Your Pancreas Pal,
Henry

Hi Becky,
I too am rather new to all this and it is a struggle!!!. My digestive
problems started about 1.5 years ago and think the pancreatitis started
after my surgery in April (fundo and gall bladder) and I still passed
stones. And yes it is a struggle!!!!! I have always been a very active
person. The last thing anyone could have called me was "couch potato".
"Crazy redhead" maybe... because I was always involved in a lot of
activities and never one to let let moss grow under my feet. If not on the
computer, I was out doing things. Do a lot of community service work (lot
less these days). Like a clean house. Used to always find something to do
working towards that goal... I was so depressed when all I could do was
work and come home struggling to event ake care of my dogs. Having Alan
around has helped trememdously because now I have a reason other than myself
for doing things. Helps me make that extra effort that it takes for things
that used to come so easy.
This last weekend certainly was an education. I did about 1/2 of what I
used to accomplish in a weekend (took it slow and easy for the most part -
just was nonstop) and I am paying for it today. There is just no way I can
keep up the pace I used too. I feel guilty about that a lot because Alan
works two fulltime jobs. He is looking for a better job so it will be just
one.
Yes this all has changed me and it has been tough adapting to the changes.
And it really is sad to lose that person we once were.
BTW - my stubborness was more often labeled "hard-headed", and still get
called that today. But I also realize I now have limitations (though still
pushing that envelop to see jsut how far it will go....) And don't jump to
say YES without first thinking it out. Learning to say NO was a tough lesson
to learn.....

Hi Everyone,
Trying to catch up on email - was an extrordinarily usy weekend. Working on
Friday's digest...
Hi Carole,
Sorry it is still there. You have a tough decision to make about the course
of your treatment. Since you are feeling "okay" these days, I think it is a
good idea to put it all aside until after the holidays. I am fortunate to
have Alan here for the holidays. I would be alone otherwise. We are
thinking about a road trip for Christmas. I am interviewing for a position
at Vanderbilt Hosp and since we weren't particular about where we went, as
long as we got away, it is looking like it will be Nashville. We haven't
picked up a ring yet, but looking at all the different styles, we know what
we both want now. Something like a 3/4 carat single round stone in a raised
setting. Will eventually add a guard to it when we do get married. Has
been fun looking.
Saturday night we went to a formal Christmas at my boss' house. Was a
wonderful event. I got to see Alan in a tux (his mother's 1st time too).
Was a very busy weekend with a hockey game on Friday (Dallas Stars) and
another on Sunday - Policemen vs. Fireman. I think I over did things and
paying for it today. Have been in the bathroom 3 times this morning with
dry heaves (can't throw up because of the surgery). Do miss that person I
once was..... And have taken pain pills twice already today. I too will get
intense pain from the gas. Almost prefer the diarrhea and bleeding
hemmroids over the gas cramps. I have fainted a couple of times in the last
year from getting dehydrated with the diarrhea. That is no fun either. The
first time it happened, I was with an ex-boyfriend. Scared the daylights
out him. Never knew my eyes rolled up in my head when I fainted before..
I don't eat much fat. My usually is fat free yogurt and a bagel with cream
cheese (which I know has some fat) for breakfast. Lunch I will usually do
soup and veggies from the cafeteria here at work. Most times I don't eat
dinner. When I do, that is is when my fat intake is the highest. Will try
to be a little more conscious of the fat in my diet. My portions have been
small since the surgery in April. Just can't eat a lot at one sitting
anyway. It is difficult eating out with the swallowing problem. I have to
know where the bathroom is before I sit down. Once food gets stuck, it
almost always comes back up - often times with no warning except the pain.

I just want to thank both of you for the work of the tapes I got mine
today and I am so excited to watch it..but wanted to thank you both
once again thank you so much..I am glad I get to see since I couldn't
make it..
wishing you all a pain free day
Anna from Michigan

Hi all,
Some time ago, Karyn mentioned a book she had been reading called
"Close to the Bone" by a Jungian psychiatrist named Jean Bolen. I
happened upon a web site with a review of that book that I thought
some of you might find interesting. Am attaching a "cut and paste"
copy of that review here.
Cheers to all,
--Tull
********************************************************************
Web posted on Monday, March 03, 1997
Close to the Bone: patients are a virtue
By Astrid Iral
A Jungian analyst and clinical professor of
psychiatry at the University of California, San Francisco, doctor
Jean Shinoda Bolen explores the inner self as a means of searching
for meaning in the face of life-threatening illness in her book,
Close to the Bone. The book addresses the benefits of alternative or
psychosomatic medicine with conventional, allopathic medicine-that
is, healing of mind and body.
A diagnosis of a life-threatening illness can be
extremely traumatic for both the patient and those around the
patient. As Bolen writes, "It potentially brings the patient and
those who are affected 'close to the bone,' into the proximity of the
soul." The illness, however, is often treated only on the physical
level, but she reminds that "life-threatening illness is [also] a
crisis for the soul." The patient must deal with illness, emotions
and the possibility of death. Regardless of the final outcome, it is
important for the patient to take control and become one who acts
rather than one who is acted upon. As she asserts, "It's not what
happens to us, but how we respond that ultimately matters and shapes
who we are from inside out."
Bolen introduces people who have had cancer, AIDS,
suffered through addictions-people who recognized the need to look
inward to the soul. Each embarks on a journey of self which, though
involving risks, reveals truth and brings about a metamorphosis of
person.
With great artistry, Bolen weaves a tapestry of tales
and anecdotes throughout this beautifully told book. She begins by
drawing from myth and stories, showing how the experience of
life-threatening illness is a descent into the underworld. This
voyage is made less frightening by the presence of a devoted,
compassionate and loyal companion, and eventually a return from
suffering in the underworld, bringing about rebirth and
transformation. She tells of the myth of Inanna, who passes through
several gates, having to remove something she is wearing at each gate
until she arrives at the last, naked and humbled. Serious illness,
Bolen argues, is no different. The patient must face various tests
and gates on the soul journey. At each trial, layers are stripped and
peeled away, revealing the core. Caregivers or other companions are
also affected because they too are tested and their responses have
consequences which reverberate back to the patient.
Bolen also prescribes humour along with myth to, as
she writes, "provide perspective on our suffering and make pain
easier to bear." Added to these is the use of such symbols as
talismans, which can produce rituals acting as rites of passage. A
common type of ritual is prayer, which she sees as a way to reach
beyond ourselves and 'summon angels' to the side of the ill.
But Bolen's most powerful tools are her stories of
others who have experienced a life-threatening illness, people who
found ways to survive and be strong.
Once on the soul journey, "a life-threatening illness
can expose the dismembered parts of ourselves that were cut off and
buried in the unconsciousness," she writes. There is no longer any
room for denial or repression of anything: relationships, childhood,
work, principles, past actions are all brought to light. The patient
must realize that now, if never before, the time is theirs and that
there is a need to say, "No!" As a result, priorities change and the
patient takes decisive action. As the patient confronts the truth, it
is important to recognize the duality of human nature and, as Bolen
suggests, "it is your negative side that will destroy your positive
side unless you are willing to recognise yourself as having both."
Most importantly, Bolen addresses the familiar lament
of "Why me?", in the search for someone or something to blame. But
illness is indiscriminate and knows no one, she writes. "Suffering,
in one form or another, does go with the territory that is human
experience. It is unpredictable in the form it will take, in the
intensity and duration, and is not equally distributed."
Finally, Bolen teaches one to come to terms with the
prospect of death and dying. If, after trying everything available,
death must still be faced sooner than expected, one must realize that
even death has its place in time. "The point ... is to live a
meaningful life, however long or short it may be."
Close to the Bone is a source of strength and
encouragement. Let it share its wisdom.

Karyn and Tull,
I got my tape today and just wanted to thank you both for the hard work
and for getting them to us it is so great to be able to see this since I
wasn't able to make it... Thank you so much you two are the greatest...
Wishing you all a
pain free day Anna from Michigan

<<Tam has been very sick again, she cant hold any food down. Last Sunday my
Uncle died of cancer. The same day my other uncle had a stroke, and a close
friend had a heart attack. Then my Dads first cousin got in a snowmobile
accident and was in a coma. All in all it has been pretty bad. I don't know
how we are going to buy presents for my kids because all of our money goes
for medications for Tam. we have one vehicle and they were going to repo it
because we are so behind. If we loose our car I have no way of getting my
daughter to and from school because there is no afternoon kindergarten
pickup. Our family told us they would not help us. I wonder how there could
be a God, because I don't know how he could let so many bad things happen.
First Tam got this awful illness, then I had a disc blow in my back and just
about tear my nerve off my spine, 3 surgeries later I still can hardly stand
the pain, My employer tells me to pack up and leave after my 2nd surgery we
loose our benefits and now all of this. When will it end? Where is God? I
need his help. I am loosing control. Thank you for caring for us. We have had
no family help at all through this. Your friends Tam & Steve
Dear Tammy and Steve,
You have incredible strength just to be able to write this post. Please send
me your address, the children's names, sex, and ages. The PSN will make sure
Santa Claus makes it to your house, if I have to don a beard and cap myself.
Please hurry, we don't have much time left. We don't won't to send money for
Christmas presents because you can't leave Tammy to go shopping. We will send
the presents wrapped and with their names on them. I know I am speaking for
the Network, but you can count on me do to a little something. Please let me
know, if there is some little special toy each child is really looking
forward to getting.
We need to do something for Tammy. I will address her medical needs in a
second post. I do not know what to do. I can only think to pray, " Dear God,
With the Christmas season upon us, as the country waits in anticipation of
Jesus' birth, signs of nativity can be seen across the land. We know, dear
Lord, that many of us have forgotten the struggles and difficulties which
were overcome during that time, we only know that you had angels watching
over them that night. God, we lift to you Tammy and Steve today, and
everyday. We lift to you their fears, their sorrow, their pain. We ask, God,
that you send angles to watch over their family. We know that you know the
anguish that they are trying to hide from their children. Children, God, who
need to know that the world so loves them, and not the cold, harsh, face of
Pancreatitis, poverty, hunger, and fear. God, we ask that you show them
mercy, give Tammy, the strength to take the nourishment of food and water
into her body. We ask that you bless this food, and let it not only nourish
their body, God, but nourish, as well, their heart and their souls; their
heart that feel empty and lonely, and their souls that feel abandoned by
those who should love them the most. God, touch, this family, hold them
close. It is in your name we pray, Amen."
Steve, I don't know why we all have to suffer so much. I don't know why so
many others and myself have to spend every single day in so much pain and
unable to eat or keep the food down. I don't know the answers to the many
questions about situations that I think are unfair. I do know that we have to
keep just enough faith to sustain us so that we can see the ever so
flickering flame of hope.
Steve, please write me and let me know what steps you have taken to get
local, state, and federal assistance. Let me know what, if any, assistance
you are already receiving. This is a call for any Network member working with
or knowledgeable in the social services arena.
As soon as I know your address, I will help you to write your congress person
and let them know that there is a very nice family who is suffering and needs
assistance to receive the social programs that have been passed in congress
to help a family just like this.
I don't want to bring false hope. I do want to send your children a gift.
And I do want both of you to know you always have someone to talk (e-talk)
with.
I also don't want anyone who is in a similar situation to feel less than or
neglected by the Network.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
1st and 3rd Tuesday Evening 7PM to 8PM
North United Methodist Church

Dear Steve and Tam,
I've not posted too you before, but I'm a member of the group, and I
just want to say that for whatever it's worth that I do care that you have
all been suffeering like Job of the Bible. I have no answers to why bad
things happen to good people. I've seen too much of it in the past eight
years, and it baffles me too. I've not suffered anything that compares to
you, but I did lose my job, my car, my health insurance, and my home to this
disease, so in some small way I empathise with you. God will bless you I
hope and life will go on, and improve. A friend of mine with Pancreatitis
told me a few years ago, that you never fail until you stop trying, and
friend, you have all been trying everything! I will pray for you every
night! God Bless you all!
Your Partner in Pancreatitis,
Henry

In a message dated 12/17/00 7:31:47 AM Pacific Standard Time,
KarynWms@... writes:
<< Dear, dear Tammy and Steve,
Reading this post has made me sad. I hear you and feel your pain and fear. I
want you to know that we are the last ones who you should worry about
letting
us know how everything is. This Network connects people from all over the
world who are living with a very catastrophic, potentially, life threatening
illness. We are just trying to make it through one day at a time. The way we
do that is by sharing; letting those who really do care about you both and
your children to be there to help shoulder some of that work.
I would like it very much if you would write me (us) back and let us help in
any way we can. There may be many miles between us, but only a heart's song
and prayerful soul in closeness.
We all care about you all more than you imagine.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
1st and 3rd Tuesday Evening 7PM to 8PM
North United Methodist Church
Karyn:
Tam has been very sick again, she cant hold any food down and that is just
the start. Last Sunday my Uncle died of cancer, we knew he was going to die
but it did not make it any easier. The same day my other uncle had a stroke,
and a close friend of my Dad and I had a heart attack. Then to top it all off
my Dads first cousin got in a snowmobile accident and was in a coma. All in
all it has been pretty bad. I dont know how we are going to buy presents for
my kids because all of our money goes for medications for Tam. we have one
vehicle and they were going to repo it because we are so behind, again
because we have to pay for medications. If we loose our car I have no way of
getting my daughter to and from school because there is no afternoon
kidnergarten pickup. A friend of mine gave us the money for the car because
our family told us they would not help us. I wonder how there could be a God,
because I dont know how he could let so many bad things happen. I hear all
the time that there is a reason for it but I dont see any reason for so many
bad things to happen. First Tam got this awfull illness, then I had a disc
blow in my back and just about tear my nerve off my spine, 3 surgeries later
I still can hardly stand the pain, My employer tells me to pack up and leave
after my 2nd surgery we loose our benifits and now all of this. When will it
end ? Where is God ? I need his help. I am loosing controll. I am sorry if
anyone is upset for me letting loose but you asked for it. Thank you for
caring for us. We have had no family help at all through this and I
appreciate you all hearing me out.
Your friends Tam & Steve

Shoot, i messed up

these are the addresses

NEW PUP:

http://www.imira.com/Album/AlbumPickup.asp?AID=116415

MY 2 DOGS:

http://www.imira.com/Album/AlbumPickup.asp?AID=116540

CATS:

http://www.imira.com/album/guestview.asp?aid=116556

Sorry bout that. Apparently the lackof eating is affecting my brain too.

by the way, if you want to enlarge a pic, just click on the pic itself, and to go to the next page, under add comments on the green section at the top of the page are 2 arrows-just press them to go back or ahead.

Again, I aplogize

Hugs, Shana

Hello everyone

I can't say enough about how this group of people has helped me get rhough the tough times.

I read a lot of posts about people meeting, and talking on the phone and stuff. Just out of curiosity, does anyone on the list live in Canada?

I'm from Halifax, Nova Scotia myself. Never been to the US, tho I've always wanted to visit.

I've only ever been in atlantic Canada and Europe (Germany, Austria, Switzerland, France, Engalnd, and holland)

Just was curious to see if there were any other fellow canucks

hugs

Shay

Yes Shana ,
The puppies are so cute.. I just got a new puppy too.. aren't they
great.. great medicine
Anna from michigan
--- In pancreatitis@egroups.com, "Kelly D. Thrasher" <thrasher@h...

Love your pics, Shana. :)

Dear Karen THANK YOU FOR YOUR REPLY PATRICIA

Dear Anna,
Hi friend! Thank you for your kind invitation to do the I.M. chat. I
will check back in from time to time, as I'm working on my job, editing
these catalogues on the computer.
I sent you my I.M. name, Pancreaskitten, in a message yesterday, and I
don't know if you recieved my message because as Carole mentioned a while
back sometimes the messages don't go through, and this sometimes happens to
my messages.
I read with great interest that your gallbladder surgery being put off
for a few days. Your surgery is now scheduled for the 20th? Right? You know
that I 'm thinking about you, and am keeping you in my nightly prayer time
along with Shirley, and Elizabeth, Jerry, Kristal, and all. I'm so sorry
that yoou are still having troubles, and not feeling well. I hope tha this
surgery will make you feel like a new person, with some much needed and
deserved relief! :-) Have you heard any more news about dear Shirley? Jims
been really good about keeping us informed. I have acard to send to her. I
know how important those cards, and letters are after surgery, and I'd like
to send you one after your surgery while you recuperate, if you don't mind.
I am not feeling well myself since late last night. I awoke in the
middle of the night with bad pain, nausea, and some vomiting. I don't mean
to complain too much, as you have enough to deal with, but just FYI, this
morning I had to miss church as I developed a really bad case of bloody
diarrhea/statorrhea. I've been taking Imodium, and Pepto Bismal, and it's
mostly stayed down, along with the Phenergan, and pain meds. I forced myself
to keep them down long enough for them to do some good. :-), and slowed
down my diarrhea, I'm glad that I have the TPN at these times so I don't get
too dehydrated from the vomiting, and diarrhea. I have had plenty of pain
also which is what really woke me at 4 A.M. Then the diarrhea hit me hard at
8 A.M. My system just seems to be disturbed, and we pancreas folks have
plenty of these types of problems, but although the nausea, and vomiting has
been off and on since my Whipple surgery, I haven't had any diarrhea since,
so something is different now. I was mostly constipated after surgery, and
the Resident I had in the hospital said this was normal after surgery, as
she explained your bowels shut down after major surgery and I 'd had it with
other surgeries, just not this long. I know a lady with Pancreatitis that I
met in my support group whos bowels shut down so long that they had to do a
scan on her, and found the reason she was so constipated was an intestinal
kink, which could have killed her, she had no bowel movements for three
weeks, and was in a great deal of pain, and had to have surgery to get
normal bowel function back. She's much better now, although they had to
remove a section of her small bowel to fix her problem, it was very serious,
and we all prayed a lot that she'd survive, and she did! :-) SWurgical
adhesions in the abdomen after many surgeries can interfere with normal
bowel function also I've learned. Dr. Adams says that I'm relatively young,
and basically of sound body, and he thinks that youth, I'm in my 30s,
is on my side as these adhesions are worse with older folks. By the way if
you don't mind my asking, about what age are you?
Well, enough of that, I get to talking and can't stop! Sorry if I bored
you too much, but I do hope that you aren't feeling too ill today my friend!
Keep that chin up, and I hope that we can I.M. chat later today, or tonight
if you are up to it. I find the cpt., and talking to all of my good friends
here theraputic, especially if Ifeel bad, but can still sit down, and here
from my friends here! It's a nice distraction from the pain. I figure that
I can be in my room listening to music feeling bad, or I can be down here
feeling poorly and be talking with my fellow Pancreas patients feeling bad.
I have acomfotable chair with lots of cushions that I can sit and type in.
So why not? I lok forward to doing the live chat with you! :-)
Your Pancreatits Pal,
Henry

Becky,
Yes I am having gallbadder surgery the 20th, they think that it is the
reason for my counts never coming back to normal so we will see if they are
right or not I just hope it helps with some of this pain...
how are you ???
Wishing you all a
pain free day Anna from Michigan

Hi Freinds

I just wanted to send another email about this.

I uploaded some pictures of the new puppies to a site that allows you to upload and organize your photo's into albums on the net so you can share them with others. And I just couldn't wait to show off my puppy and her siblings to everyone!

My pup's name is Chaya (K-eye-ya) It was a toss up between Chaya, Zoe, Akira or Mikah. Chaya won :o)

Her brothers and sisters names are Bandit (because of his mask) Squeak (because she does) Patches (because of her markings) and Ralph...because the mom threw up on him when he was born. It was that or barfalamew LOL

Chaya is an absolutly gorgeous puppy. Blue eyes, darkish coat-I can't wait to bring her home January 14th.

The address for the photo's are

http://www.imira.com/Album/AlbumPickup.asp?AID=116540

I also have 2 other albums there of my other 2 furbabies, Spirit and Nikki. You can see them at .

http://www.imira.com/Album/AlbumPickup.asp?ID=116570

and of course the kittens

http://www.imira.com/Album/AlbumPickup.asp?ID=116556

I plan on doing a webpage of the pups, but that takes awhile and I wanted to show my new baby off to everyone ASAP.

Well, about myself-I am still unable to eat. i have dropped about 12 pounds since the 7th. Fortunatly I need to lose it. The only problem is that alot of the time I throw up my meds. Which makes the pain worse, which in turn makes the vomiting worse. I see my pain doc Monday (tomorrow) and I'm hoping that at least temporarily she will change my meds to a transdermal fentanyl patch, one that you wear for 3 days at a time. That way it doesn't matter if I can't keep anything down.

I called my GI both Thursday and Friday. Friday the guys secretary called back and told me he said to go to the ER (thanks for the concern, doc!) When I told her I had already gone there twice, she said she'd talk to him again and call me back. I'm still waiting. It makes me so mad. These doctors get us into these situations, and then don't give a flying rats @$$ about how sick we get. I'm so tired of dealing with these idiots.

Because i can't eat, i still feel pretty yucky. I get dizzy if I stand or sit up too long. But if I eat I throw up and wind up with a whole lot of pain. I'm damned if i do, damned if I don't. I'm actually getting kinda worried. not only because it's lasting so long and the severity isn't improving, but because usually, with nausea, if I smoke some marijuana, i can eat. Well, I smoked some a few nights ago, and the nausea went away and i could eat, but then all of a sudden I got really sick and just couldn't stop vomiting. SO this makes me wonder if the doc didn't damage something. Because usually once the nausea is gone the vomiting stops. Not this time.

Well, i guess i have rambled on long enough. To everyone who have written with get well wishes and prayers, thank you so much. it means a lot.

I will post again soon. Sometimes it feels like this is the only contact I have with the outside world, and especially with people who understand!

Love you all, and hugs

Shana

In a message dated 12/16/00 10:52:37 AM US Eastern Standard Time,
PtPpurple@... writes:
<< I signed on to this network in hopes of finding out some information on
how to deal with this disease but I have found it more like a chat line. I
have been checking around the Internet looking for more info.
Patricia,
Thank you for sharing your concern regarding the Network, i.e., chat line VS
information outlet. This does concern me. The Network has two main missions.
Originally it was established to network all the information available on
Chronic Pancreatitis available world wide. It became apparent quite early
that the people who were suffering from Pancreatitis needed to talk to
someone who finally understood what it was like to live with such a
catastrophic and potentially catastrophic disease. My original home page
stated that the mission of the Network was to push the frontier of study on
this disease.
I have come to realize that both of the goals are equally important, talking
to others and finding medical facts.
Please don't get discourage, you or anyone else hunting for information.
There are a few ways you can find that information you are looking for.
First, Ask any Pancreatitis related question you have as an open post to the
group. I have no doubt that you will be flooded with multiple amount of
responses that will consist of medically technical answers, suggested links
to sites specifically related to the question you asked, as well as the
psychological and emotional aspects that members experienced. I have, also,
put together a rather large list of links that you can access through the
egroup home page. Here is the URL:
Patricia and anyone else who wants to has medical questions, wants to know
what research is going on in the world, read medical articles written in most
major medical journals, or have a discussion group purely to discuss the
medical aspects of this disease, please write to me ( KarynWms@...) or
call me (317-298-7279).
I am sure almost everybody knows about the Symposium the Network put on in
Indianapolis last month. At the present time the Network is writing proposals
to put on three or four events for 2001. I am working with multiple
pharmaceutical companies to sponsor these events. These are companies that
manufacture medicines that most pancreatic patients take. This relationship
has instigated a request that members of this Network can participate in
different research studies. Additionally, the Network is developing a working
relationship with doctors specializing in Pancreatitis to consider being in
research study groups across the United States. Both the pharmaceutical
companies and Doctor's common feeling is that they think it is wonderful that
someone has worked so hard to pull together so many persons with Pancreatitis
across the United States. As you know most doctors (with the exception of
doctors in major medical institutions) rarely have a patient with
Pancreatitis. The Pancreatitis Support Network provides them with a valuable
resource.
So I ask you, Patricia, and each of the rest of you, seeking a web site that
is focused on learning technical medical information and resources, to not
click your mouse on the unsubscribe button yet. You have found that web site
you are looking for. It is just that you haven't surfed through the entire
services of the Pancreatitis Support Network.
There are many Pancreatitis email groups in the WWW. It would be wrong to
grade them profess the PSN to be better. They are all just different.
Ofcourse, I feel the PSN to be the most comprehensive and proactive.
I expect every person and their loved ones to be treated with respect and
dignity. They need to be active participant in the health care plan. This can
only be accomplished if they have an understanding of the disease process,
the treatment options available around the globe. Additionally, they need to
know important nutritional considerations as well as the role psychosocial
and emotional factors have in our health care status.
I am dedicated to this mission. This cannot be accomplished through one web
site. For this reason, I am currently developing a Pancreatitis Web Ring. For
those who may not know what a web ring is, it is designed to network [ thus
the name Network :-) ] every Pancreatitis email group and / or medical /
informational web site together in a ring. You will understand it when you
see it.
There are a few things I want to leave you with:
1) Pancreatitis email groups are not designed for competition, i.e., who has
the most members, etc., Anybody who is suffering with or others living and
affected by this disease can be of immense value and able to help another.
fAs the bible says, when two or more come together, for prayerful purpose,
God is there.)
2) It is wrong for anyone in the PSN or any other group to share in a
derogatory manner which hurts another person and extinguishes any of their
flame of hope.
3) The most important issue for anyone one of us is to achieve and maintain
the highest level of quality of life that can be expected. This is a very
individual and soul searching journey.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
1st and 3rd Tuesday Evening 7PM to 8PM
North United Methodist Church

<< In a message dated 12/15/00 11:11:32 PM Pacific Standard Time,
briffle@... writes:
<<It has been awfully quiet up there... Is everything OK? What is up with
you? Is Tammy OK? Becky
In a message dated 12/17/00 12:06:51 AM US Eastern Standard Time,
LenhartROCKO@... writes:
<< No everything hasn't been good but I didn't want to depress everyone else.
Tammy is very nauseated, she has been vomiting a lot lately and she has no
line in now. I think she may have to go back in. A lot of other bad things
have happened also death and illness. it has been very hard for us. I sure
hope this year will be better than this year has been. If you would like
e-mail me personally and I will tell you the details. I sure have missed
writing you guy's but I don't think I would be very good to talk to rite now.
Your friends Tammy & Steve
Dear, dear Tammy and Steve,
Reading this post has made me sad. I hear you and feel your pain and fear. I
want you to know that we are the last ones who you should worry about letting
us know how everything is. This Network connects people from all over the
world who are living with a very catastrophic, potentially, life threatening
illness. We are just trying to make it through one day at a time. The way we
do that is by sharing; letting those who really do care about you both and
your children to be there to help shoulder some of that work.
I would like it very much if you would write me (us) back and let us help in
any way we can. There may be many miles between us, but only a heart's song
and prayerful soul in closeness.
We all care about you all more than you imagine.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
1st and 3rd Tuesday Evening 7PM to 8PM
North United Methodist Church

In a message dated 12/17/00 7:47:59 AM US Eastern Standard Time,
Tll619@... writes:
<< Hi Christine, sorry so late in getting back to you. Between my own back
pain and the Christmas shopping my mom's had back surgery and been back to ER
twice this week. They admitted her with spinal fluid leaking She had a
pocket of fluid the size of an orange. Plus I was in a wedding yesterday. I
have Monday to look forward to...another try at a block on my back. I pray
this one works. I will be keeping you in my prayers. Terri L.
Hi Terri,
It sounds like you have really had a lot on your plate. WOW. Any one of these
things would have put me down for a rest quickly. It is great that you have
been able to participate in life; sometimes it seems as though I just watch
it pass by. The one thing you need to remember is that HERE you never have to
apologize or give excuses. I am sure we all understand that it is hard to
keep up with reading or writing posts within the Network; that is either if
you are too sick or too busy. My UP time is so limited, that I can barely get
my regular stuff done and still have the energy to spend time with all of you
here. My aim lately is to achieve some semblance of a balanced and harmonious
lifestyle. I find that within the posts of this Network. Thanks so much being
here.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
1st and 3rd Tuesday Evening 7PM to 8PM
North United Methodist Church

Elizabeth,
I'm glad you're back home and the gallbladder is out. Hopefully this will
help you in the long run. I'll continue to keep you in my prayers for a
speedy recovery. Keep that pillow for the tummy close by for the sneezing and
coughing.
Terri L.

Anna,
I saw your post to Leon. What state are the two of you in? The two cities you
mentioned....are they in Texas...if not we have them too. I was wondering
because I'm in Baytown which is fairly close to Bay City I believe. I have an
aunt from Midland. If your mentioning Texas what a small, small world. I
would love to meet you if your interested.
Terri L.

Hi Christine,
Sorry so late in getting back to you. Between my own back pain and the
Christmas shopping(or trying to ) my mom's had back surgery and been back to
ER twice this week. Yesterday they finally admitted her with spinal fluid
leaking and reopened her last night around 9:30. She had a pocket of fluid
the size of an orange. Plus I was in a wedding yesterday. Needless to say all
the standing and sitting in hospital chairs has put me through the ringer. I
do have Monday to look forward to...another try at a block on my back. I pray
this one works.
In answer to your question....I have heard of trazidone but only as an
anti-depressant. I was also given it in the beginning of my problems when I
couldn't sleep at night. It really seemed to help in that department.
How are you doing with the liquids? I hope you're finally able to get some
nourishment in you. The pain management doctor I go to is really good. I go
once a month to discuss how the meds are working and if anything has changed.
When I first went I told him I wanted to try conservative treatment since I
wanted to work as long as I can. These are the meds he has me
on....Zanaflex-a muscle relaxer...Neurontin-it's on anti seizure med but they
also use it for nerve pain....Phenergan as needed...Darvacet for
pain....Vicadin as needed for pain...Celebrex for immflamation...From my
Gasto Dr I also take Prevacid, Viokase and now I'm also on insulin. I've also
had 2 Nerve Root blocks. The first one worked great for 2 months, the second
one didn't work and now I'm scheduled Monday for my 3rd one. On the second
one he also did the right side of my back but had used the same amount of
medication as with the first one and he seems to think it was too diluted and
that's why it didn't work so we're trying again only on the left side. That's
where most of my back pain is. Yes, I've had the Whipple. I had it in August
of 99. I had a tumor on the head of my pancreas. It took three long months of
constant pain and many tests before they found out what was wrong. All my
pain started in May 99. They had done 2 ERCP's and blood work right before my
surgery and thought by one blood test done as a cancer marker that it was
pancreatic cancer. Thank God is wasn't . He told me 99% of the time it is
cancer so I'm VERY lucky. I still have lots of problems but at least I am
alive to feel the pain.
What is your history with this dreadful disease? I hope that pain management
will be able to help you. I encourage you to go and seek help. I one can't
help keep trying till you find a good one.
I hope this finds you having a good day today. Let me hear from you soon and
I will be keeping you in my prayers.
Terri L.

In a message dated 12/15/00 11:11:32 PM Pacific Standard Time,
briffle@... writes:
<< Hey you guys......
It has been awfully quiet up there... Is everything ok? What is up
with you? Is Tammy ok?
Becky
Hi Becky:
No everything hasnt been good but I didnt want to depress everyone else.
Tammy is very nauseated, she has been vomiting alot lately and she has no
line in now. I think she may have to go back in. Alot of other bad things
have happened also death and illness. it has been very hard for us. I sure
hope this year will be better than this year has been. If you would like
e-mail me personally and I will tell you the details. I sure have missed
writing you guy's but I dont think I would be very good to talk to rite now.
Your friends Tammy & Steve

Dear Anna,
Hey there my friend! I appreciate your reply, and I would love to do the
instant messenger chat with you. My name for that is Pancreaskitten. I know
it's kind of a silly name, but I couldn't get PancreasCat, which is what I
wanted since I have Chronic Pancreatitis, and I love cats! I'm sure also
that we would hit it off wonderfully if we could ever meet in person. You
have such a positive, sunny personality that you'd be very much fun to sit
down and chat with in person. It's just too bad that we live a thousand
miles apart with me in South Carolina, and you in Michigan. There are a lot
of folks online that I wish that I could meet in person. I'd really like to
meet Shirley, she's so sweet, and tries so hard to keep plugging away no
matter how ill she is. I admire that trait in both of you ,and many others
here! :-)
I will probably be online tommorrow if you'd like to try, I just don't
know what time, probably in the afternoon, or evening.
I'm sorry that you are still not feeling well, and having trouble
eating. I'm also sorry that your pain level is so high. Try and keep that
chin up! I know that you will be relieved when your gall bladder surgery is
done, and you know that I'll be praying for you my friend.
Your Pancreatitis & Surgical Friend,
Henry

I am so happy to hear you can work from home it can be very boring not
working and feeling productive. I miss the interaction with others as my job
involved a lot of communication. I was a telerep for an insurance company
dealing with our district offices all over Canada and the States. Prior to
that I worked as a hairdresser so people skills were very important in both
jobs. I had to give up hairdressing due to allergies and we both know why I
no longer have my insurance job, Its hard to work full time with the pain .
I also developed an allergy to perfume which trigged asthma attacks every
time I was exposed to it. Unfortunately big offices have mega perfume people
and no one must ask people not to wear it. They get very angry.

Dear Patricia,
Hey again! W