Tried to use the system at yahoo groups

[Guest guest]

Hi all...

My name is ricki, I am a 41 year old sufferer

I tried last week to introduce myself and ask some questions, seek

some support over at yahoo pancreatic survivors group, maybe the

system is glitched as apparently the messages are only being sent out

to a few individuals...

well.. Hello..

I have experianced pancreatic episodes even since a child, first go

round at age 7, again at age 9, 15, 16, 21, 23... and then they began

with a vengence...

after multiple misdiagnosis, because back then, noone actusally

looked into pancreatic disorders in kids, appendix out, gallbladder

out... implant of an interthecal morphine pump to control pain that

was still undiagnosed... 1994... I then recieved my first diagnosis

of acute pancreatitus a week after they slapped the pump in

since 94, I had been ranging in about 4 -5 attacks a year until

around 2001, and now, the Official diagnosis is Recurant acute

pancreatitus, with a genetic etimology?

I'm down and gone at least 3 days out of each week, I find quality of

life a long gone thing...

Basicly, I just lay here and wait to die

my pain control doc is compassionate, my digestive desease doc has

writtin that, " Unfortunately, I have no suggestions for any type of

plan that would reduce the exacerbative eppisodes of this patients

pancreatitus " .

I can deal with the pain, thank you Mr. Pump

but even water and a spoonful of rice is enough to lay me out for

days, the vomiting is so bad

I stopped running to the hospital for admissions awhile ago

not whining, just want to put it out there

mostly glad to find a board that deals with this

I've lossed 80 pounds in the past 9 months, I still have good body

structure, jusyt a total lack of energy and will to do anything with

it

insomnia and major depression are significant factors

just want to make some aquaintances and find some people whho

understand what it's like to keep trying to live with a desease that

most doctors don't even have a clue about, at least in my experiance

never an alcohol imbiber, it just happened

I'm in Central Oregon, and I guess my greatest mind benders right now

are, is it just a lack of knowelege on the proffessionals part, or

with the pump, havre I been shoveled into a 'pain control only' pile.

is it my Federal and State funded HMO plans that won;'t allow me to

be sent up the ladder for further study

i fear I have lost my humanity in my own mind set that maybe it's

best that I be seeking assisted suidide, I bring nothing to the

table, I can't wotrk and pay taxes anymore

My only wish is to get my daugher graduated from HS, she's 12, single

parent and trying to make it work, while cronicly ill... Kinda a

tough ticket...

Question;

Am I nutz or has anyone else here observed any of the

following:

darker and more concentrated urine 24 or so hours before an

exacerbation, turning to frequent urination, like every 20 minutes,

very clear...

agitation and stress, to the point of actually becoming angery and

volitile, then slipping off into an unwakable stupor for hours... to

wake up with... duh duh duh duuuuh

a full blown epi of this dreaded creature?

I wonder often about multui system organ interactions, and with a

blodd sugar count a couple of points away from diabetic now, I fear

when my kidneys will become , uh, stressed?

I do manage to raise my PCP's eyebrows and get a, " hmmmmm, thats

unusual "

just wondered if these are anomalys, or if maybe there's another

survivor who can validate these markers and help me with a sigh of

relief

i was just offered the option of a trip to University of Oregon for a

possible endoscpic ultrasound

anyone with any info on WHY this would be a good idea... have

allready undergone multiple ercp's, mrcp, cat scan, ultrasound... 5

go rounds with interal feeding by Nasal Djujunem tubes, fats and

lipids by pick line for a month times 2...

Thank you all for taking the time and energy to wander thru the

verses here, peace love and loads of hippy stuff