Re: [Pancreatitis] Venting /

[Guest guest]

In a message dated 11/06/2002 11:51:12 US Eastern Standard Time,

karenw@... writes:

> >>> the nausea is ...bad despite Phenergan. ... I also feel somewhat

> despondent. double my Wellbutrin ... fatigue is from being depressed ...

> He is insistent ... not just keep me drugged and comfortable ... sent them

> each a letter ... by the time I showered and dressed I was wiped out ...

> physically or mentally ... I feel as if I have lost myself ... W.<<<

HI ,

It sure sound like you are going through so much stress, both physical and

mental. All of my research presently is focused on the role that stress plays

on our disease process as well as ability to heal. It is refreshing to read

your posts because they aren't just pity parties, you always focus on seeing

yourself through this, and you continue to search for answers. You haven't

given up. You are very strong.

Regarding the " nausea " I switched to Zofran several years ago. It works so

much better than Phenergan for me. Recently I switched to Zofran Elixir

because there was a question as to how much I was absorbing. I can't believe

how well it works. It is very expensive, fortunately my insurance company

Merck approved it. I also approach the nausea control with diet and

alternative approaches like reflexology and meditation. When I do reflexology

before I eat, it is most effective.

Regarding being " despondent " I also take Wellbutrin. The recommended dose is

150 mg Bid (twice daily). I don't like adding yet another pill to my list but

depression affects every aspect of my well being, including the nausea.

Actually, depression is addressed on every one of my care plan problems

because if I am depressed, I do feel fatigued, weak, lethargic, have

insomnia. Most importantly it affects my immune system, and I am more likely

to pick up an infection. Nobody talks about how our sexuality is affected by

having Pancreatitis, but one of the main reasons it does is because of the

depression and the side effects of all the medications. Wellbutrin is the one

antidepressant medication that is known to improve sexual desire.

Regarding, " not just keep me drugged and comfortable " I think that is so

wonderful that he understand how toxic the treatments can end up being to our

own healing. I know that I have to constantly be conscious of the medications

I am taking. Before I know it I can be taking one med to counteract the side

effect of another med, to counteract the side effect of that med, and, etc.,

etc., It can get out of control quickly. It takes a lot more time from a

physician to seek alternative treatments other than the quick fix of drugs.

Being drugged and comfortable provides me with absolutely no quality of

life--none. that is the one factor that can have me 'wanting out .' We rarely

talk about any suicidal ideation that we may have from time to have. I am

saying that it is important that we acknowledge the feelings we are having. I

am not saying that suicide is okay or an answer. It is not an answer, it is

wrong, it is actually illegal. But that doesn't mean that I don't ask God to

take me home sometimes in my nightly prayers. I mean that sometimes I just

feel that I can't do this anymore. In the same prayerful dialogue with God, I

also tell him that he is my maker and he is my taker. This is the journey I

have been given. This is the journey I will graciously walk.

The principles of the 12 steps of Pancreatitis, is based on the premise of

one person with Pancreatitis helping another person with Pancreatitis.

Through the sharing of our experience, strength, and hope, we can walk

through this valley, one day at a time. (If anyone is interested in helping

me develop this new 12 step program let me know)

Regarding, " sent them each a letter " that is one of the most effective tools

I use for several of my care plan problems. First it is therapeutic. There is

power about putting something on paper, I use it to name, claim and embrace

the issue. There is someone about seeing what seems paramount in black and

white on a one dimensional piece of paper. It is the elephant in the living

room phenomenon. Lily uses this tool when she goes to the doctor. It helps in

two ways. One is that when we show up at the office, we often forgets the

details of what has been going on at home. These details are important to

help substantiate our disabled, deteriorating condition. It also gives the

doctor an excellent tool to ensure that he/she has all the details when they

go to document the office visit. I write my doctor a progress note every

time I go to the doctor, too, but also, every time I go pick up prescription

(Rx) refills.

Regarding, " by the time I showered and dressed I was wiped out " as depressing

as this makes you feel, it is a goal which you can use it in a positive way

to feel better. Goal setting is an important therapeutic intervention I use

in every one of my care plan problems. When we live with chronic illness, one

of the signs of giving up is to give up our hopes and dreams, it becomes

difficult to see past our current problem. And, our problems are of such high

magnitude, that overcoming them seems insurmountable. It is important to take

little steps. We never achieve any goal in one big step. Every great

researcher has small goals they have achieved that warranted big

celebrations. I have several journals that I keep. One of them addresses the

goals in my life. Because every goal is by nature of normal definition

positive, it is a wonderful tool to help us stay focused on the positive

aspects of our healing. So when you said " by the time I showered and dressed

I was wiped out, " I was impressed that you were even able to shower and dress

before you were wiped out. There have been times when I haven't been able to

take a shower, and needed to take a bed bath. Worse than that, I had to ask

someone to bath me. That was only after I was so dirty I was beginning to

smell myself. (That's called pride.)

Regarding " physically or mentally " you mentioned not knowing if your

complaints were mental or physical, but it doesn't matter. They are real.

That is critical that we acknowledge that, and particularly supportive when

your PCP understands that. I am reading a book called, " Timeless Healing " by

Herbert Benson, MD. It is about the power and biology of belief. It discusses

how our beliefs and thoughts take on a physical role in our bodies, whether

it is in healing or destruction. I'll talk more about this in another post,

but the main point is his scientific research about this powerful topic. He

is a Harvard Medical School Physician.

When you said, " I feel as if I have lost myself " I thought of the title of

another book, actually an audio book, I am listening to. It is called,

" Wherever you go, there you are. " Its focus is on the fact that we can't run

away from ourselves and our problems, but on the flip side of that, we also

can't ever loose ourselves. It is done by Dr. Kabat-Zinn, the founder and

director of the stress reduction center at the U of Mass. Medical Ctr. The

important message that I have received from these meditation tapes is that

even though I may feel worthless, purposeless, and disconnected from the

world around me, that is not true. I am, always have been, and always will

be, that person that God intended for me to be.

And, , you are too. We all are.

Karyn , RN

Founder / Executive Director

http://www.pancassociation.org

1- / KarynWms@...

PAI Home Office: Indianapolis, Indiana, USA

[Guest guest]

In a message dated 11/06/2002 11:51:12 US Eastern Standard Time,

karenw@... writes:

> >>> the nausea is ...bad despite Phenergan. ... I also feel somewhat

> despondent. double my Wellbutrin ... fatigue is from being depressed ...

> He is insistent ... not just keep me drugged and comfortable ... sent them

> each a letter ... by the time I showered and dressed I was wiped out ...

> physically or mentally ... I feel as if I have lost myself ... W.<<<

HI ,

It sure sound like you are going through so much stress, both physical and

mental. All of my research presently is focused on the role that stress plays

on our disease process as well as ability to heal. It is refreshing to read

your posts because they aren't just pity parties, you always focus on seeing

yourself through this, and you continue to search for answers. You haven't

given up. You are very strong.

Regarding the " nausea " I switched to Zofran several years ago. It works so

much better than Phenergan for me. Recently I switched to Zofran Elixir

because there was a question as to how much I was absorbing. I can't believe

how well it works. It is very expensive, fortunately my insurance company

Merck approved it. I also approach the nausea control with diet and

alternative approaches like reflexology and meditation. When I do reflexology

before I eat, it is most effective.

Regarding being " despondent " I also take Wellbutrin. The recommended dose is

150 mg Bid (twice daily). I don't like adding yet another pill to my list but

depression affects every aspect of my well being, including the nausea.

Actually, depression is addressed on every one of my care plan problems

because if I am depressed, I do feel fatigued, weak, lethargic, have

insomnia. Most importantly it affects my immune system, and I am more likely

to pick up an infection. Nobody talks about how our sexuality is affected by

having Pancreatitis, but one of the main reasons it does is because of the

depression and the side effects of all the medications. Wellbutrin is the one

antidepressant medication that is known to improve sexual desire.

Regarding, " not just keep me drugged and comfortable " I think that is so

wonderful that he understand how toxic the treatments can end up being to our

own healing. I know that I have to constantly be conscious of the medications

I am taking. Before I know it I can be taking one med to counteract the side

effect of another med, to counteract the side effect of that med, and, etc.,

etc., It can get out of control quickly. It takes a lot more time from a

physician to seek alternative treatments other than the quick fix of drugs.

Being drugged and comfortable provides me with absolutely no quality of

life--none. that is the one factor that can have me 'wanting out .' We rarely

talk about any suicidal ideation that we may have from time to have. I am

saying that it is important that we acknowledge the feelings we are having. I

am not saying that suicide is okay or an answer. It is not an answer, it is

wrong, it is actually illegal. But that doesn't mean that I don't ask God to

take me home sometimes in my nightly prayers. I mean that sometimes I just

feel that I can't do this anymore. In the same prayerful dialogue with God, I

also tell him that he is my maker and he is my taker. This is the journey I

have been given. This is the journey I will graciously walk.

The principles of the 12 steps of Pancreatitis, is based on the premise of

one person with Pancreatitis helping another person with Pancreatitis.

Through the sharing of our experience, strength, and hope, we can walk

through this valley, one day at a time. (If anyone is interested in helping

me develop this new 12 step program let me know)

Regarding, " sent them each a letter " that is one of the most effective tools

I use for several of my care plan problems. First it is therapeutic. There is

power about putting something on paper, I use it to name, claim and embrace

the issue. There is someone about seeing what seems paramount in black and

white on a one dimensional piece of paper. It is the elephant in the living

room phenomenon. Lily uses this tool when she goes to the doctor. It helps in

two ways. One is that when we show up at the office, we often forgets the

details of what has been going on at home. These details are important to

help substantiate our disabled, deteriorating condition. It also gives the

doctor an excellent tool to ensure that he/she has all the details when they

go to document the office visit. I write my doctor a progress note every

time I go to the doctor, too, but also, every time I go pick up prescription

(Rx) refills.

Regarding, " by the time I showered and dressed I was wiped out " as depressing

as this makes you feel, it is a goal which you can use it in a positive way

to feel better. Goal setting is an important therapeutic intervention I use

in every one of my care plan problems. When we live with chronic illness, one

of the signs of giving up is to give up our hopes and dreams, it becomes

difficult to see past our current problem. And, our problems are of such high

magnitude, that overcoming them seems insurmountable. It is important to take

little steps. We never achieve any goal in one big step. Every great

researcher has small goals they have achieved that warranted big

celebrations. I have several journals that I keep. One of them addresses the

goals in my life. Because every goal is by nature of normal definition

positive, it is a wonderful tool to help us stay focused on the positive

aspects of our healing. So when you said " by the time I showered and dressed

I was wiped out, " I was impressed that you were even able to shower and dress

before you were wiped out. There have been times when I haven't been able to

take a shower, and needed to take a bed bath. Worse than that, I had to ask

someone to bath me. That was only after I was so dirty I was beginning to

smell myself. (That's called pride.)

Regarding " physically or mentally " you mentioned not knowing if your

complaints were mental or physical, but it doesn't matter. They are real.

That is critical that we acknowledge that, and particularly supportive when

your PCP understands that. I am reading a book called, " Timeless Healing " by

Herbert Benson, MD. It is about the power and biology of belief. It discusses

how our beliefs and thoughts take on a physical role in our bodies, whether

it is in healing or destruction. I'll talk more about this in another post,

but the main point is his scientific research about this powerful topic. He

is a Harvard Medical School Physician.

When you said, " I feel as if I have lost myself " I thought of the title of

another book, actually an audio book, I am listening to. It is called,

" Wherever you go, there you are. " Its focus is on the fact that we can't run

away from ourselves and our problems, but on the flip side of that, we also

can't ever loose ourselves. It is done by Dr. Kabat-Zinn, the founder and

director of the stress reduction center at the U of Mass. Medical Ctr. The

important message that I have received from these meditation tapes is that

even though I may feel worthless, purposeless, and disconnected from the

world around me, that is not true. I am, always have been, and always will

be, that person that God intended for me to be.

And, , you are too. We all are.

Karyn , RN

Founder / Executive Director

http://www.pancassociation.org

1- / KarynWms@...

PAI Home Office: Indianapolis, Indiana, USA

[Guest guest]

Karyn,

Thank you so much for your kind words and understanding. You are

one awesome lady! You seem to always have such wonderful insight.

Without the love and support of my online friends, this journey

would be so much worse.

I will talk to my doctor about switching to Zofran elixer for my

nausea when it is really bad. I have had with great success with

all my surgeries since 1993. It has prevented post-op nausea with

about 80% of my surgeries and procedures.

On another note, I received an e-mail back from Dr. Sutherland.

I had sent him an e-mail over the weekend in hopes that he might have

some magical insight into what could be done to help me. I didn't

dream that he might even suggest I have CP since all my doctors here

are insistent that my panc is perfectly healthy (according to all the

films from tests - they can't see it via ERCP because of my gastric

bypass). In his e-mail he said my story is complicated but that even

though I didn't mention my age (I'm 41) my story is 'similar to those

of others I have seen with what is called minimal change chronic pancreatitis

of young women, where amylase and lipase levels are not consistently

eleveated but are part of the time, and in whom ERCPs,generally show a

normal appearing duct.'

He said they had done the pancraetectomy with islet cell transfer in many

of these cases and have had elimination of the pain in about 80% of the

cases. He said most of the time if you haven't had surgery directly on

the pancreas, you do not end up diabetic. He did say that about 15% of

the time with cases like mine, removing the pancreas does not eliminate

the pain and you end up diabetic. He said he would be happy to consult

with my doctors.

His e-mail was both reassuring and very frightening. I have been clinging

to the doctors telling me that I definitely do not have CP - I have

recurring acute panc. However, in the back of my mind has been the

knowledge that so many in our group have been told they didn't have CP

for years, only to find out later they had it for quite some time. The

reassuring part is that Dr. Sutherland didn't just blow off my problems

despite the fact that I often have these episodes of severe pain, nausea,

and vomiting with totally normal labs, x-rays, ct scans, etc. He offers

hope for a better life if things continue as they have over the last few

months.

For now, I am going to proceed with my disability retirement from work

and hang in there to the best of my ability until the retirement can be

processed. Once it has been processed, if things continue as they have

been, I will seriously consider seeing Dr. Sutherland. He is obviously

an awesome man. My e-mail was rather lengthy but he took the time to

read it and take me seriously. I had also e-mailed Dr. Sherman and Dr.

Lehman and Dr. Sherman responded immediately. He also said he would be

very happy to consult with my doctors to see if they could be of help.

Dr. Sherman did say that a complete ERCP would be difficult if not

impossible because of the gastric bypass (which I already knew) so he

was not sure if he or Dr. Lehman would really be able to do anything to

help me.

Again, thank you so much for your e-mail. It meant more than you can

know.

W