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In a message dated 4/12/00 8:17:13 PM Central Daylight Time,

briffle@... writes:

<< I'm frustrated, I'm mad and I just don't care anymore. I'm sorry for

burdening you guys with all

of this. Just ignore me.

>>

you aren't bothering or burdening anyone! that is why we are all here sharing

- so it will be a lighter load. someone asked me today what i was doing

lately and i said " nothing much. " i think writing to all of you is the

greatest portion of activity that i have lately. but if i didn't - i

wouldn't have anyone to talk to about this condition. i mean - i can only say

so much to my mom, son & husband. i have one sister that is a nurse and

understands a lot of things, but she lives in colorado and doesn't contact me

much. one sister here that ignores everyone (even my mom) - we only see her

on thanksgiving (maybe) and christmas. i have a sister in calif. and she

doesn't have a clue as to what is really going on. some people ask you

questions - but they don't really want to hear...does that make sense?

my mom has been so great - but she has her own health problems too so i worry

about her trying to do too much. she's not in terrible shape or anything,

but i don't want to push her to that point. a lot of times i tell her i

just want to rest or something so she won't come over and start folding up

and putting away my clothes etc;.

i am not nearly as sick as a lot of the others on this list - but i am

looking at what lies ahead and i still don't have any reason for this

occuring in my life. i am just sitting at home waiting for the doctor to call

to say they have decided to do some other tests or if i will have an attack

bad enough where i will have to go back to the hospital. i see all these

things around the house that i should be taking care of and i just don't want

to even try to tackle it. and sometimes i feel like if i hear another person

ask me how i feel i will just scream! ha.

everyone has to have an outlet to tell how they feel and their progress or

regression - and this is our outlet. don't stop talking! we all learn so

much from one another about how we feel physically and mentally. that's what

a support group is all about - uplifting each other and taking off some of

the weight of illness.

whew - i didn't mean to write so much! i hope it doesn't just seem like

dribble!

debbie

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Hi Karyn and all......

However, when we come face to face to the reality

that our lives have

been changed forever, we need a shoulder to cry on, we need to know

that

someone understands, we need to know that everything will be okay.

I believe

that there is a natural grieving process in letting go of our lives

as we

wanted them to be.

You are so very right. I finally

came to the realization last night(with the help of my husband)that my

life is not the same and it is never going to be the same. When I

read this the other night I was still denying and saying my life will be

better as soon as they find out what is wrong with me. In some ways

I am still holding on to the fantasy that I will someday be able to "run

myself ragged" again. I hit the utitlity pole head on because I fell

asleep at the wheel from living on 2 hours of sleep every night.

Yes, 2 hours. Since that accident, my life has not been the same

by any means. If I could go back and change that day I would. I still

look at everyone and point fingers and say" I am not as sick as Karyn,

or andre or or Shari. I am going to be ok. The Dr. is

right and I will not have to deal with all of this all my life."

Last

night I think I finally lost it. I ended up yelling at my wonderful

husband and saying things I would never say under normal circumstances.

I told him I couldn't do this anymore. The uncertainty of not knowing

what is wrong with me. I have been going through this long processes

for almost 2 years.....and I no longer feel like being that strong warrior

everyone wants me to be. I keep saying that I want my life back,

but my husband asks me if I want the sleepless nights back, the craziness,

the constant tiredness and I have to say no. But I want my livilihood

back...something I can't have. I sit here at home daily, doing housework,

taking naps, doing little things here and there.....but not working, or

making money or being productive.

I don't want pity,

I jsut am trying to explain to someone, anyone what I am going through.

People want to know what is wrong with me and why I am sick, when I am

coming back to work, why I sleep so much.....I can't tell anyone the answers

to these, so I hide out and try to stay away from everyone so I don't have

to find answers to these questions.

I'm frustrated, I'm

mad and I just don't care anymore. I'm sorry for burdening you guys

with all of this. Just ignore me.

Becky

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i see all these

things around the house that i should be taking care of and i just

don't want

to even try to tackle it. and sometimes i feel like if i hear another

person

ask me how i feel i will just scream! ha.

Debbie,

Thank you for understanding!

this is exactly how I feel. My husband and my Mom have been so supportive.

My one sister lives in Chicago, she is always wanting to know why I can't

keep up with the her when I go shopping.....My other sister lives close

but doesn't come by much. My brother... welllll... lets just say

we use to be close till he got married.

I try to make a list

of things to do everyday... I don't always accomplish them and it upsets

me. My husband says I set my goals to high.

It's just so hard.....you

know?

Becky

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In a message dated 4/12/00 6:17:08 PM Pacific Daylight Time,

briffle@... writes:

<< I'm frustrated, I'm mad and I just don't care anymore. I'm sorry for

burdening you guys with all

of this. >>

Hi Becky,

It's OK to feel this way, I'm sure we all have at one time or another. I

know I have. I came to grips with disease along time ago and I can say that

I tolerate the bouts of illness a lot better than I use to. The best Dr. I

ever had told me the other day that I would never get well, that I would

always be sick. I think this was a moment for him not me. He was so caught

up with trying to make me better that he failed to realize that I was never

going to get better. THIS I KNEW! I've read enough articles and researched

en\ough material to know that there is no cure for this awful disease,

treatment yes, but NO CURE. The sooner you stop focusing on when and how the

quicker you can get on with life. YES, LIFE, you, WE still have that and I

don't know about anyone else but I plan to make the best of what I have or

may have left. Stay positive and enjoy waking up each and every morning to

the light of day. The day that GOD has given you, a lot of people don't have

that.

Marie

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Hi Debbie,

Just take one day at a time. Do what you can when you can. As far as your

family goes, don't expect them all to understand where you've been and where

you're coming from. I too have a big family scattered all over, however I

have 2 sisters that have been very supportive of my illness. They worry

about me all the time. My Mom on the other hand doesn't want to be blamed

for my being ill. The only ones who really matter to me anymore are my

husband and children. They are the ones who are most impacted when I am

really sick. They are my shoulders to lean on when things get really rough.

Most importantly GOD is my Savior and I put all my faith in him. When things

start to get really rough I just let him carry me. He's always there for

anyone that needs him.

Marie

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In a message dated 4/14/2000 8:41:01 PM Eastern Daylight Time,

lizbear68@... writes:

<< They want me to send me to Cleveland

Clinic, to this new MD or that new MD. >>

,

Hang in there. I know it gets to be frustrating at times with the lack of

knowledge exhibited by the medical profession and lay people alike. Just

remember, you don't owe anyone an apology for this illness. Regardless of

the circumstances which brought on the initial onset of pancreatitis, you

only owe yourself the best medical treatment you can afford. That is why I

think you should seriously consider going to the Cleveland Clinic if

referred. This is perhaps the best location for you if you are trying to

find out the rudiments of this disease and affect some meaningful change in

the way you feel. If at all possible, please go. It will do you a world of

good, believe me. I wish I had known about this place before I started

getting all of my surgeries (7 total surgeries since 1990). Regardless on

what you decide to do, try not top live your life for others who don't

understand this illness.

Andre'

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In a message dated 4/17/00 7:19:14 PM Central Daylight Time,

lizbear68@... writes:

<< You HAVE chronic

pancreatitis and this is the way your life will be. " I would feel so much

better! Does this make sense? >>

hi elizabeth - yes it makes sense. i wish someone would tell me the same

thing. i talked to my gi dr. this afternoon very briefly, i really wanted to

get a lot of information out of him but i could tell he was in a hurry. i

have not been able to sleep at night and i was asking if my pain meds could

be acting in reverse on me or something. he said to not take them and to take

some tylenol! yeah - i'll sleep real well tonight. he said that was the only

way he could tell if it was the pain medication. he has also kept talking

for weeks now about sending me to dallas for some tests and today he said

again that he is " talking to dallas " and trying to line it up and i said have

you talked to the ins co. yet? " no, not yet. " i feel like nothing is being

done right now. i am especially uncomfortable in the evening. i think i'll

call the case manager w/my ins co tomorrow and see what she has to say about

everything. sat. my mother talked me into going up not far from my house to

a landscaping place and i saw my boss there. i was so glad to see someone

from work! she said i probably felt guilty for being " out " and i told her

no, i've GOT to get away from the house every once in a while! i'm sure she

thought i looked perfectly healthy.

well - i'm sorry i went on and on also. debbie

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Several years ago when I was going through the same kind of situation with

dueling doc's and diagnosis I began to think that it had to do more with me

losing my mind than anything really wrong with me. It took them 2 years to

finally diagnose my pancreatitis. It finally took having a CAT scan to get

the diagnosis. I was so frustrated and really sick. Don't let anyone make

you feel like you are just crazy or put you off. Your pain and agony is real

and once you get a diagnosis and can determine what is causing the chronic

pancreatitis there may be some form of treatment that can help manage some of

the problem. It took me having to switch doctors several times as well, but

I have finally found a doctor who listens to me and is very knowledgeable

about pancreatitis. He is an internal medicine doctor as my recurring

attacks are caused by high triglycerid levels. Medication management is

helping my problem.

Good luck and rely on your own instincts.

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After it taking 2 years to finally get a diagnosis myself it sounds like you

need to find another doctor who genuinely cares about you as a person. It

took me awhile of going to different doctors, but finding one who is not only

knowledgeable but cares about me as a person is important. One of the side

effects of pain medication is insomnia. They are also addicting and if you

are having to stay on them for extended periods of time just because your

doctor is not making your care his priority you may want to explore looking

for another doctor. I have an internist as my primary care provider because

of my problems. He is also our family doctor so if your are on insurance you

should be able to get an internist assigned as well. My pancreatitis is

caused from high triglycerid levels. It is taking two medications to manage

my triglycerid levels but I'm not having to stay on pain medications all the

time and I am for the most part able to carry on with my life. I only have

attacks that come on periodically, but for the most part I am able to have

somewhat of a normal life. I noticed that you said you live in Dallas? I

live in Arlington. I have a wonderful doctor who does care about me and my

pain and is very personable and thorough. He has been wonderful in dealing

with my pancreatitis. If you would like his name and phone number I would be

glad to share it with you.

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In a message dated 04/18/2000 8:33:02 AM Central Daylight Time,

acastenell@... writes:

<< lizbear68@... >>

Andre',

Your advise to was right on target! I too had an extremely

difficult time getting an appropriate diagnosis and by the time they finally

determined what was wrong with me I was about ready to believe I must just be

going crazy and just making all my pain up because the " highly respected

authorities " couldn't even tell me what was wrong. My blood work up and all

the other multitude of tests the multitude of doctors put me through nearly

always came back normal. The only thing they could confirm was that I was

anemic and it was a result of chronic illness - not iron deficiency!!!!!!!!!

I got so bad finally that I had to be hospitalized. A CAT scan was finally

done, however the infection in my abdominal cavity was so severe they could

not tell where the infection was coming from. After three weeks of

antibiotics, pain and anti-nausea medication, a second CAT scan was done.

This is when they finally determined that the infection was coming from my

pancreas. This is when they finally started paying attention to my

triglycerid levels because they were extremely high - 2500! This is what

causes my pancreatitis. Managing my triglycerid levels is difficult but at

least I can take a combination of 2 medications - lipitor and lopid - and I

have been able to get back to somewhat of a normal life without chronic pain.

I still have some episodes as I probably will all my life, however it is no

longer constant and I am no longer on pain medication every day or nearly

every day.

, this is a very difficult disease to diagnosis. Get you a good

doctor that genuinely cares about you as an individual. It took me going to

several doctors before I found one who was willing to sit down and take the

time to listen to me and what I've had to experience. I go to an internist

who is very knowledgeable about recurring or chronic pancreatitis. He is a

caring individual who genuinely knows his patients and cares about the care

they receive. I'm no longer having to undergo unnecessary procedures or

tests only to be told everything is normal. Your pain is real!!! Don't give

up and don't let anyone make you feel that it is not. Keep talking to others

for support and suggestions.

Sandy

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In a message dated 4/19/00 9:22:48 PM Central Daylight Time, smraef@...

writes:

<< He is an internal medicine doctor as my recurring

attacks are caused by high triglycerid levels. Medication management is

helping my problem. >>

sandy - never mind my question about cause - if i had read all my emails

first - i would have seen the answer. i have had high levels and that is

what they thought caused mind at first - but have had several attacks since

it was under control. debbie

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In a message dated 4/19/2000 5:47:24 PM Eastern Daylight Time,

celeeanestierney@... writes:

<< Andre', I had bad pain after my Whipple too. It was 2 years later they

discovered bleeding ulcers in my small intestine. My pancreas was dumping

right into the small intestine eating away at the mucus membrane!!! once I

was treated for that my life began!! I have pain sometimes, but I'm generally

pain free. I was in the hospital here in Nashville in Feb. for two weeks, but

it had been a year and a half since I had been hospitalized. Hey, I lived in

new Orleans for a while. I went to Loyola. >>

Cele,

That is really wonderful news! I knew if I had the opportunity to speak with

others who had a Whipple performed I would find a lot of success stories.

It's funny you mentioned developing an ulcer in your intestines after

surgery. I too developed an ulcer shortly after returning from the hospital.

Mine, however, was in my stomach which made it much easier to treat, I would

imagine. I held out the hope that, once the ulcer was healed, I would begin

to experience some relief, but this never happened. While I did feel

somewhat better once it healed, I still had those excruciating pancreatic

attacks, primarily located in the upper quadrant of my abdomen, radiating to

the left. As a matter of fact, the pain now is much worse than before the

surgery and more constant. One thing I keep reminding myself is that no one

promised me that this would work for me completely. I knew the risks

involved and was fully willing to take those risks for the hope of leading a

" normal life " again. While I fell far short of my goal, it is great to know

that you were able to beat this thing. I do have one question for you,

though. Have you developed diabetes since your surgery? My blood sugar was

fine up until recently when I was diagnosed with the early stages of

Diabetes. I don't have to take any medication and my diet is already

severely restricted so there really wasn't anything they could do for me but

tell me to keep monitoring my blood sugar. If it rises to a certain level, I

am to come back to the Endocrinologist for further consultation. I expect

this to happen fairly shortly as my blood sugar continues to rise. Once I am

full blown Diabetic, I will than have the option of having my Pancreas

removed completely. This is my best hope for a pain-free existence. While

it is a dramatic solution to the problem, it is the only option available to

me now since I have had every other treatment available without success.

Sorry to ramble on so, it wasn't my intention to bore you with my story. I

really only wanted to congratulate you on the success of your Whipple

surgery. It's just so seldom I have the opportunity to share my story with

someone who has shared a similar experience.

Good luck to you in your future endeavors.

Andre'

P.S. I didn't mean to exclude you, Jang. I know you too have Pancreas

Divisum and are also available to speak to your condition from a standpoint

of knowledge and experience. I hope you find this message in good health.

You are constantly (as well as the others members of our group) in my

thoughts and prayers.

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In a message dated 4/20/2000 12:22:45 PM Eastern Daylight Time,

jang2@... writes:

<< I'm still trying to avoid major surgical procedures, since there is no

solid record of success. So far I've had sphincterotomies, stents,

Somatastatin injections, a TENS unit, acupuncture, stress reduction exercises

as well as the very low fat diet & pancreatic enzymes. I've probably left

some things out, but the bottom line is that nothing seems to work. >>

Jang,

You are so right with your statements. I too have been put " through the

ringer " with all that you mentioned. I too got no relief from any of the

things suggested. One thing I am certain of, though. I would have much

better served if I had never agreed to any of the surgeries I've had in the

past. While they all offered the hope of a pain-free existence, they all

came with the disclaimer that it didn't work for everyone. Well, I guess I am

not the typical pancreatitis suffer since nothing worked in my case. Surgery

did make me much worse, though.

Great hearing from you again. I don't post nearly as much as I did in the

past since everyone seems to be getting so much more knowledgeable. But I do

read the posting daily and am always impressed with both your knowledge and

understanding when addressing others in our group.

You are a tremendous asset to the group. I only hope they are aware of your

input.

Andre'

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--

>In a message dated 4/19/2000 5:47:24 PM Eastern Daylight Time,

One thing I keep reminding myself is that no one promised me that this would

work for me completely. I knew the risks involved and was fully willing to take

those risks for the hope of leading a " normal life " again. While I fell far

short of my goal, it is great to know.....

>P.S. I didn't mean to exclude you, Jang. I know you too have Pancreas

>Divisum and are also available to speak to your condition from a standpoint

>of knowledge and experience.

Andre'

Hi Andre`. Yes, I also have had chronic pancreatitis, probably from pancreas

divisum, for about 9 years. I'm still trying to avoid major surgical

procedures, since there is no solid record of success. So far I've had

sphincterotomies, stents, Somatastatin injections, a TENS unit, accupuncture,

stress reduction exercizes as well as the very low fat diet & pancreatic

enzymes. I've probably left some things out, but the bottom line is that

nothing seems to work. I've been trying to keep a daily log of pain levels,

meds taken, etc. & will try a pain clinic again. I'm strongly considering a

nerve block, but everything is still unsettled. If there is one thing

pancreatitis teaches well, it is that nothing can be definitely planned; always

be prepared to remake any & all plans.

Hope everyone has a good holiday,

Jang

--== Sent via Deja.com http://www.deja.com/ ==--

Before you buy.

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--

>Great hearing from you again. I don't post nearly as much as I did in the

>past since everyone seems to be getting so much more knowledgeable. But I do

read the posting daily and am always impressed with both your knowledge and

understanding when addressing others in our group.

>You are a tremendous asset to the group. I only hope they are aware of your

input.

>

>Andre'

>

Thanks so much for your kind words, Andre`. You

sure can make a girl blush! Actually, you &

this group have been a tremendous help to me. There is nothing more valuable

than hearing about the experiences of those who have " been there, done that " .

Doctors tend to minimize the complication rate, amount of " discomfort " to be

expected with procedures, & I think they exaggerate the success rate of whatever

surgery or treatment they are promoting. For example, I often hear GI doctors

tell patients who develop pancreatitis after an ERCP, " Oh, that's so rare. Only

about 5% of ERCP patients have a problem after. " Yeah, right.

Have any of you tried hypnotism? I have been thinking of trying hypnotism

before another invasive type of treatment. Anyone tried this? Any luck?

jang

--== Sent via Deja.com http://www.deja.com/ ==--

Before you buy.

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In a message dated 4/22/00 12:21:38 AM Central Daylight Time, smraef@...

writes:

<< My

family is really upset with the situation with one of my children really

scared for me. She is now refusing to come to the hospital to visit me

because she is afraid that I won't be coming home. I know this doesn't make

sense, but she is only 14 and has had several loses in her life already and

is almost immobilized by my illness. Any suggestions to help her? >>

you've had pancreatitis longer than i have - i had first attack in march of

97. 14 is a hard age anyway! it might be better if someone else out of the

family were able to talk to her and help her realize what is going on - and

that you need her support.

debbie

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--

> My family is really upset with the situation with one of my children really

scared for me. She is now refusing to come to the hospital to visit me because

she is afraid that I won't be coming home. I know this doesn't make sense, but

she is only 14 and has had several loses in her life already and is almost

immobilized by my illness. Any suggestions to help her?

>

>Sandy

Hi Sandy. It sounds like you really have your hands full! I don't know what

type of family support system you have, but I'm sure you've already tried

having family members try to help your daughter. Is there a priest, minister,

rabbi, youth leader who your girl feels comfortable with? Many hospitals have

the equivalent of a " child life coordinator " who can help children handle coping

with illness, loss, etc. of a family member. There may be a social service

department that can get your daughter some help. There are groups specifically

for children coping with serious illness or death of a parent. It can be a

great comfort for your daughter to know that she is not the only teen going

through this.

Good luck with your daughter. I hope you are feeling better soon. Please let

us know how things are going for you.

jang

--== Sent via Deja.com http://www.deja.com/ ==--

Before you buy.

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In a message dated 4/20/2000 10:16:26 PM Eastern Daylight Time,

jang2@... writes:

<< Have any of you tried hypnotism? I have been thinking of trying hypnotism

before another invasive type of treatment. Anyone tried this? Any luck? >>

Jang,

You must be on the same wave length as I am. I was just discussing this with

my wife last night. While I know my company insurance probably won't cover

this since it isn't a recognized medical procedure, but I'm willing to try

just about anything that offers a remote chance of success. Let me know what

you decide to do concerning hypnotism. I am seeking help through my GI

doctor in securing someone I can be comfortable with and has worked with this

sort of thing previously.

Good luck in your decision.

Andre'

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Jang,

Thanks for your support. I've had family members talk to her and our church

family is very supportive and helpful. It is like she is stuck in the anger

stage and I can't seem to get her past this. Being a 14 yr. old in itself

has it's problems, but she has had other problems in her life without my also

having to be sick. I've gone the counseling route with her for a great deal

of the other issues she has had to deal with, but we seem to be stuck on this

particular problem more so than any of the others. I'm a social worker

myself and even though I can see the problems I can't seem to find the key to

helping her. I know as her mother I am far too emotionally involved and seek

others out for assistance and I make sure she has other adults I trust

available to her. She just stays angry at me all the time now and it seems

like she is looking for excuses to be angry. This seems to have effected her

far more than my two older children who are now 17 and 19. I know she is

scared, but when we try to talk about this she avoids me. Lashing out in

anger, primarily at me, is getting to be what she does the best. She can be

very vicious verbally. She's a wonderful child with a heart of gold when

dealing with other people - just not me. Just having a place where I can get

my thoughts and feelings out is helpful. I look forward to being able to

come and read my e-mail now knowing that others are going through what I am

experiencing. I am less worried about my own health at this point than I am

for my daughter. I am going to try to see what kind of support groups I can

find for her and if I can't find one, maybe I can get someone to start one.

I have several friends who are counselors and I know there are several

children who have to deal with problems like this as well. I've thought

about this in the past, but just dealing with the day to day problems and

stress, I had put it on the back burner and forgotten about it. Thanks for

bringing it back to the surface for me to consider again.

Sandy

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In a message dated 4/21/2000 11:43:19 PM Eastern Daylight Time,

smraef@... writes:

<< Don't ever apologize for rambling. The whole purpose of a support group

is

to have a release for our thoughts and feelings! >>

Sandy,

Thanks for the kind words of encouragement. We all need to hear this from

time to time so we know we aren't just " whining. "

Take care.

Andre'

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You know Andre' it is okay to whine once in a while as well. I think we are

much more sensitive to thinking that we are whining when we really aren't. I

am so grateful to have found a place to discuss my thoughts and feelings.

Sandy

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Hi Jan,

....just reading the postings..been very busy lately. Jim tried hypnosis

therapy...it relaxed him to some degree but did very little for the

pain...but, again, people react differently to the various procedures

and treatments...maybe it would work for you. Just to let you know Jim

is still working full time and is feeling really good! (THANK YOU ANGELS

AND GOD!)...He went fishing this past weekend...actually we all did (us

and our 3 kids)...had a blast! Life is SO good right now---I'm learning

to enjoy life more...the work (laundry, cleaning isn't going anywhere)!

Take care,

Lorrie

jang2 wrote:

>

> --

>

>

>

> >Great hearing from you again. I don't post nearly as much as I did

> in the

> >past since everyone seems to be getting so much more knowledgeable.

> But I do read the posting daily and am always impressed with both your

> knowledge and understanding when addressing others in our group.

> >You are a tremendous asset to the group. I only hope they are aware

> of your input.

> >

> >Andre'

> >

>

> Thanks so much for your kind words, Andre`. You

> sure can make a girl blush! Actually, you &

> this group have been a tremendous help to me. There is nothing more

> valuable than hearing about the experiences of those who have " been

> there, done that " . Doctors tend to minimize the complication rate,

> amount of " discomfort " to be expected with procedures, & I think they

> exaggerate the success rate of whatever surgery or treatment they are

> promoting. For example, I often hear GI doctors tell patients who

> develop pancreatitis after an ERCP, " Oh, that's so rare. Only about

> 5% of ERCP patients have a problem after. " Yeah, right.

>

> Have any of you tried hypnotism? I have been thinking of trying

> hypnotism before another invasive type of treatment. Anyone tried

> this? Any luck?

>

> jang

>

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> Before you buy.

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> Online e-mail group

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> To reply to this message hit " reply " or send an e-mail to:

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