Re: Positive support / encouragement / Peg

[Guest guest]

In a message dated 11/24/2002 9:50:11 PM US Eastern Standard Time,

brwnbare9@... writes:>

> >>> It is not easy to see anyone suffer especially a child, but even more is>

> the fact that it is your child.....wanting to know WHAT caused this

> horrible disease ... was in the beginning the one thing I NEEDED TO KNOW,

> but as time went on it no longer mattered HOW or WHY? The ONLY thing that

> mattered was he had it, the focus was now how to get RID of it, or if need

> be HOW TO LIVE with it. <<<

This seems to be a disease that we almost have to diagnose ourselves, for so

often the CT scans, MRIs, ERCPs fail to give the information doctors need to

give a definitive diagnosis. We get so many emails from people searching this

wide world of the web seeking anything to confirm and give name to their

symptoms. And, then there is the other group of frontiers searching for the

tools of survival and/or recovery.

The foundation of the PAI is based on the 12 steps of PAINcreatitis with one

person with this disease (in their life) helping another with this disease in

their life. At the time of the PAI's conception, I had no idea of how

important a role the friends, caregivers, and parents of those who suffered

from this disease, would play in carrying out this mission. I want to thank

all of the people who have taken an active role in this organization to help

all of us learn to direct our attention to living in the solution and not the

problem.

Time is of the essence with this disease. There is a lot of data that needs

to be gathered in a goal to empower us to make enformed health care

decisions. This disease is causing damage to healthy cells everyday, we sit

back and ask " Why me? " . It is imperative to take a proactive role on your own

interdisciplinary health care team. Otherwise, you could be sitting back

forever, asking, " Why didn't I? " .

And, no one wants to or can afford to do that. Shame, blame, and guilt are

toxic to us physically, mentally, and spiritually.

>>> the focus was now how to get RID of it, or if need be HOW TO LIVE with

it. <<<

Staying positive is essential. What you have said here is so supportive and

encouraging. It is important to acknowledge that though some of us have not

found a way to get rid of it (YET), you don't make us feel like we have done

something bad or if only we had done A, B, or C, we, too, could be cured.

But, you continue your post with positive encouragement and hope, for us to

learn how to live with it. Wellness is in a large part, a state of mind, it

is not always the absence of disease.

Thanks for serving as the Mass. State Rep. Thanks for taking the initiative

to step forward and speak out for the National Pediatric Division of the PAI.

I encourage anyone who has a child / adolescent with this disease to please

let us know who you are. The State and Regional Representatives across the

United States, Canada, and the rest of the world are available to listen. The

PAI has the numbers and resources to now take our voice to Capitol Hill.

Pediatric Pancreatitis issues are part of this campaign for legislative

changes to do whatever we can do to help improve the quality of life for your

child and your family.

Karyn E. , RN

Founder / Executive Director

Pancreatitis Association International

Corp. Office: Indps, IN, USA 1-

[Guest guest]

In a message dated 11/24/2002 9:50:11 PM US Eastern Standard Time,

brwnbare9@... writes:>

> >>> It is not easy to see anyone suffer especially a child, but even more is>

> the fact that it is your child.....wanting to know WHAT caused this

> horrible disease ... was in the beginning the one thing I NEEDED TO KNOW,

> but as time went on it no longer mattered HOW or WHY? The ONLY thing that

> mattered was he had it, the focus was now how to get RID of it, or if need

> be HOW TO LIVE with it. <<<

This seems to be a disease that we almost have to diagnose ourselves, for so

often the CT scans, MRIs, ERCPs fail to give the information doctors need to

give a definitive diagnosis. We get so many emails from people searching this

wide world of the web seeking anything to confirm and give name to their

symptoms. And, then there is the other group of frontiers searching for the

tools of survival and/or recovery.

The foundation of the PAI is based on the 12 steps of PAINcreatitis with one

person with this disease (in their life) helping another with this disease in

their life. At the time of the PAI's conception, I had no idea of how

important a role the friends, caregivers, and parents of those who suffered

from this disease, would play in carrying out this mission. I want to thank

all of the people who have taken an active role in this organization to help

all of us learn to direct our attention to living in the solution and not the

problem.

Time is of the essence with this disease. There is a lot of data that needs

to be gathered in a goal to empower us to make enformed health care

decisions. This disease is causing damage to healthy cells everyday, we sit

back and ask " Why me? " . It is imperative to take a proactive role on your own

interdisciplinary health care team. Otherwise, you could be sitting back

forever, asking, " Why didn't I? " .

And, no one wants to or can afford to do that. Shame, blame, and guilt are

toxic to us physically, mentally, and spiritually.

>>> the focus was now how to get RID of it, or if need be HOW TO LIVE with

it. <<<

Staying positive is essential. What you have said here is so supportive and

encouraging. It is important to acknowledge that though some of us have not

found a way to get rid of it (YET), you don't make us feel like we have done

something bad or if only we had done A, B, or C, we, too, could be cured.

But, you continue your post with positive encouragement and hope, for us to

learn how to live with it. Wellness is in a large part, a state of mind, it

is not always the absence of disease.

Thanks for serving as the Mass. State Rep. Thanks for taking the initiative

to step forward and speak out for the National Pediatric Division of the PAI.

I encourage anyone who has a child / adolescent with this disease to please

let us know who you are. The State and Regional Representatives across the

United States, Canada, and the rest of the world are available to listen. The

PAI has the numbers and resources to now take our voice to Capitol Hill.

Pediatric Pancreatitis issues are part of this campaign for legislative

changes to do whatever we can do to help improve the quality of life for your

child and your family.

Karyn E. , RN

Founder / Executive Director

Pancreatitis Association International

Corp. Office: Indps, IN, USA 1-

[Guest guest]

Karyn,

This is Patty one of the people Peg was replying to in her message. Please

don't get me wrong, I am very interested in finding a cure for this terrible

and agonizing disease my daughter has and many more suffer from . Our hope

are that if we can find out why she has CP that maybe it can lead us in the

right direction for relief.

Both my husband and I are very proactive in her care. Our frustration lies

within may of her Doctors who refuse to believe the facts even when they are

staring them in the face or come up with some BS reason as to why htis would

not apply to Cassie. As a reace we say that we a humane, how can that be when

Drs let CP suffers live in agony for days on end. We realize that to

discover any information at all we must find it our selfs. The other issue

we have been facing here with Cassie as of late is well if she was over 18

we'd try.

Add to that the additional frustration of the rest of the people who interact

with Cassie one a regular basis and just can't seem to understand that she's

still sick even if she's not currently hospitalized. The idea that she can

be in pain to the extent that we say is unbelievale to these people. Add to

that the fact that Cassie has ADHD, non verbal learning disorder and not

been on any meds for it in over a year. her GI says Since ritalin and

concerta are simulants he does not want her on them. They can cause

additional stomache pain as I'm sure you are aware of. Her ability to

control her impuliveness and activity is hard to control when she's feeling

the pains of her CP part of this is her trying to deal with pain and this

adds addtional stress on her and the rest of us too.. This causes additional

problems with school. First you get well if she's in that much pain she

shouldn't be here then they come back and say " why isn't she in school, she's

missed to much.

Her newset GI in Boston has applied looking into a grant for a study on

involving pancreatic biopsies in childen and there usefulllness as a

diagnostic tool. We asked where so we sign her up he said it would be at

least 2 years before he would get to humean test trial stage of the study.

Our hopes will always be to find a Cure for Cassie but if we don't that

doesn't mean we can't help those who may experience this in the future.

Cassie is also very involved in the decisions made regarding her CP and what

the future holds. Please let us know what we can do to help further the

legeslation you've been talking about.

Today as we Give Thanks today, I'd like to say that i'm so thankful for

finding this site the knowledge, support and adive received from all. God

bell you all

Patty in Baangor ME

[Guest guest]

Karyn,

This is Patty one of the people Peg was replying to in her message. Please

don't get me wrong, I am very interested in finding a cure for this terrible

and agonizing disease my daughter has and many more suffer from . Our hope

are that if we can find out why she has CP that maybe it can lead us in the

right direction for relief.

Both my husband and I are very proactive in her care. Our frustration lies

within may of her Doctors who refuse to believe the facts even when they are

staring them in the face or come up with some BS reason as to why htis would

not apply to Cassie. As a reace we say that we a humane, how can that be when

Drs let CP suffers live in agony for days on end. We realize that to

discover any information at all we must find it our selfs. The other issue

we have been facing here with Cassie as of late is well if she was over 18

we'd try.

Add to that the additional frustration of the rest of the people who interact

with Cassie one a regular basis and just can't seem to understand that she's

still sick even if she's not currently hospitalized. The idea that she can

be in pain to the extent that we say is unbelievale to these people. Add to

that the fact that Cassie has ADHD, non verbal learning disorder and not

been on any meds for it in over a year. her GI says Since ritalin and

concerta are simulants he does not want her on them. They can cause

additional stomache pain as I'm sure you are aware of. Her ability to

control her impuliveness and activity is hard to control when she's feeling

the pains of her CP part of this is her trying to deal with pain and this

adds addtional stress on her and the rest of us too.. This causes additional

problems with school. First you get well if she's in that much pain she

shouldn't be here then they come back and say " why isn't she in school, she's

missed to much.

Her newset GI in Boston has applied looking into a grant for a study on

involving pancreatic biopsies in childen and there usefulllness as a

diagnostic tool. We asked where so we sign her up he said it would be at

least 2 years before he would get to humean test trial stage of the study.

Our hopes will always be to find a Cure for Cassie but if we don't that

doesn't mean we can't help those who may experience this in the future.

Cassie is also very involved in the decisions made regarding her CP and what

the future holds. Please let us know what we can do to help further the

legeslation you've been talking about.

Today as we Give Thanks today, I'd like to say that i'm so thankful for

finding this site the knowledge, support and adive received from all. God

bell you all

Patty in Baangor ME

[Guest guest]

Karyn,

This is Patty one of the people Peg was replying to in her message. Please

don't get me wrong, I am very interested in finding a cure for this terrible

and agonizing disease my daughter has and many more suffer from . Our hope

are that if we can find out why she has CP that maybe it can lead us in the

right direction for relief.

Both my husband and I are very proactive in her care. Our frustration lies

within may of her Doctors who refuse to believe the facts even when they are

staring them in the face or come up with some BS reason as to why htis would

not apply to Cassie. As a reace we say that we a humane, how can that be when

Drs let CP suffers live in agony for days on end. We realize that to

discover any information at all we must find it our selfs. The other issue

we have been facing here with Cassie as of late is well if she was over 18

we'd try.

Add to that the additional frustration of the rest of the people who interact

with Cassie one a regular basis and just can't seem to understand that she's

still sick even if she's not currently hospitalized. The idea that she can

be in pain to the extent that we say is unbelievale to these people. Add to

that the fact that Cassie has ADHD, non verbal learning disorder and not

been on any meds for it in over a year. her GI says Since ritalin and

concerta are simulants he does not want her on them. They can cause

additional stomache pain as I'm sure you are aware of. Her ability to

control her impuliveness and activity is hard to control when she's feeling

the pains of her CP part of this is her trying to deal with pain and this

adds addtional stress on her and the rest of us too.. This causes additional

problems with school. First you get well if she's in that much pain she

shouldn't be here then they come back and say " why isn't she in school, she's

missed to much.

Her newset GI in Boston has applied looking into a grant for a study on

involving pancreatic biopsies in childen and there usefulllness as a

diagnostic tool. We asked where so we sign her up he said it would be at

least 2 years before he would get to humean test trial stage of the study.

Our hopes will always be to find a Cure for Cassie but if we don't that

doesn't mean we can't help those who may experience this in the future.

Cassie is also very involved in the decisions made regarding her CP and what

the future holds. Please let us know what we can do to help further the

legeslation you've been talking about.

Today as we Give Thanks today, I'd like to say that i'm so thankful for

finding this site the knowledge, support and adive received from all. God

bell you all

Patty in Baangor ME

[Guest guest]

one

> person with this disease (in their life) helping another with this

disease in

> their life. ]

THIS IS WHAT IT IS ALL ABOUT KARYN. For if I can help just one as

you have helped so many then I truly have done something. As we have

said time and time again, Paincreatitis is a very lonely disease and

although very bittersweet, I truly couldnt have made it through these

last few years without everyone that have helped us along the way.

For if it was not for this site of wonderful people I truly do not

know where we would of been. I will always be deeply indebted to all

who have been there for us along the way. As always keeping you and

yours in our thoughts and prayers...Keep smiling(cuz sometimes its

all one can do!) TTFN.. Peg : )