VENTING.... on the soapbox today...

[Guest guest]

è we have a responsibility to speak up, and make our voices heard. I hope

that everyone who has this disease, who knows some one with it, who Loves

someone with it ... will take the time to listen and understand ... will

stand up for the ones they love, will tell the doctors to pay attention and

find out WHY, and WHAT is causing the pain

Dear :

I know the loss of Marty is hard for you and his family, but if he could look

down from heaven and see that out of his leaving earth the way he did would

activate all of us to speak up -- and together maybe we can make " our voice "

heard -- he would smile, and maybe even shout YEAH. Even if we belong to one

or two or even three different Pancreatitis groups, I would hope that we can

work together, because that is the only way we will be heard.

I believe that the support offered through message boards is a very important

first step for uniting those suffering from Pancreatitis and their

caregivers. The Symposium is offering us a chance to take that second step

by networking with Pancreatitis specialists and each other. - you

take care. Allow yourself to grieve, this is hard -- so hard; but we are

here for you not matter what. You know how important it is to share the

knowledge -- and we all appreciate the work you have done with your research

for answers when none of us had them. So remember that now -- your letter

today may save countless lives. Thank you,

Gail West þ Many People, Many Faces, One Voice

Indiana State Chapter Representative

Pancreatitis Association International

http://www.pancassociation.org

contactPAIgwest@...

[Guest guest]

è we have a responsibility to speak up, and make our voices heard. I hope

that everyone who has this disease, who knows some one with it, who Loves

someone with it ... will take the time to listen and understand ... will

stand up for the ones they love, will tell the doctors to pay attention and

find out WHY, and WHAT is causing the pain

Dear :

I know the loss of Marty is hard for you and his family, but if he could look

down from heaven and see that out of his leaving earth the way he did would

activate all of us to speak up -- and together maybe we can make " our voice "

heard -- he would smile, and maybe even shout YEAH. Even if we belong to one

or two or even three different Pancreatitis groups, I would hope that we can

work together, because that is the only way we will be heard.

I believe that the support offered through message boards is a very important

first step for uniting those suffering from Pancreatitis and their

caregivers. The Symposium is offering us a chance to take that second step

by networking with Pancreatitis specialists and each other. - you

take care. Allow yourself to grieve, this is hard -- so hard; but we are

here for you not matter what. You know how important it is to share the

knowledge -- and we all appreciate the work you have done with your research

for answers when none of us had them. So remember that now -- your letter

today may save countless lives. Thank you,

Gail West þ Many People, Many Faces, One Voice

Indiana State Chapter Representative

Pancreatitis Association International

http://www.pancassociation.org

contactPAIgwest@...

[Guest guest]

è we have a responsibility to speak up, and make our voices heard. I hope

that everyone who has this disease, who knows some one with it, who Loves

someone with it ... will take the time to listen and understand ... will

stand up for the ones they love, will tell the doctors to pay attention and

find out WHY, and WHAT is causing the pain

Dear :

I know the loss of Marty is hard for you and his family, but if he could look

down from heaven and see that out of his leaving earth the way he did would

activate all of us to speak up -- and together maybe we can make " our voice "

heard -- he would smile, and maybe even shout YEAH. Even if we belong to one

or two or even three different Pancreatitis groups, I would hope that we can

work together, because that is the only way we will be heard.

I believe that the support offered through message boards is a very important

first step for uniting those suffering from Pancreatitis and their

caregivers. The Symposium is offering us a chance to take that second step

by networking with Pancreatitis specialists and each other. - you

take care. Allow yourself to grieve, this is hard -- so hard; but we are

here for you not matter what. You know how important it is to share the

knowledge -- and we all appreciate the work you have done with your research

for answers when none of us had them. So remember that now -- your letter

today may save countless lives. Thank you,

Gail West þ Many People, Many Faces, One Voice

Indiana State Chapter Representative

Pancreatitis Association International

http://www.pancassociation.org

contactPAIgwest@...

[Guest guest]

I posted this to another group I belong to so I'm sorry if many of

you have already seen it, but I was on the soapbox when I wrote it

and I felt it was something I needed to share with everyone.

Yes he (Marty) did have CP, his was idiopathic, and they ran him

around in

circles before they ever diagnosed him. They thought he had a psuedo-

cyst and were going in to remove it because of the size, but what

they found was cancer that had wrapped around his pancreas, spleen

and infiltrated his liver. They closed him back up and gave his

family the news. If they had done the CA-19-9 they would have seen

the cancer markers and quite possibly prolonged his life.

He suffered a great deal more pain than I would ever wish on even my

worst enemy (even than I would on those that attacked the US.) He

was on constant IV pain meds and chemotherapy that made him even

weaker.

He was a vibrant young man (although opinionated as all get out, to

know him was to Love him!!) And he was a wonderful father, and

brother. His sister was with him from the very beginning of

the illness, and she was, I am sure there when he passed. I feel

like the system failed him terribly. I hope that by Speaking up

about the illness and how sadly most of those that suffer with CP

(well, a great number of them anyway) will end up in this same

position at some time (maybe not in a terminal case, but there none

the less) we have a responsibility to speak up, and make our voices

heard.

I hope that everyone who has this disease, who knows some one with

it, who Loves someone with it... will take the time to listen and

understand... will stand up for the ones they love, will tell the

doctors to pay attention and find out WHY, and WHAT is causing the

pain. And lastly will tell the doctors before they just open someone

up to CHECK, DOUBLE CHECK THEN CHECK AGAIN, for cancer BEFORE they do

any surgeries.

We have to be proactive in our treatment. We have to be vocal about

how we feel, and we have to stand our ground when they tell us they

don't know... because that is unacceptable. I DON'T KNOW... its a

cop out.

Ok, I am done, climbing off of my soap box... for a minute at least.

I hope you are all having a PAIN less Day!

{{{HUGZ}}}