Re: Back to Patty

[Guest guest]

That was only Cassie's story. Here's me. Way back in 1986 I got very. very

sick. Thanksgiving, had dinner with boyfriends family then I went to my

girldfriends house. I was there when they tell me I said excuse my while I pass

out

and theat's just what I did. I had some stomach pain but no more then you

would expect after T-day food. Anyway they couldn't get me to come to so they

called 911, I awoke in the Er they said my sugar dropped way low, treated me

for that and sent me on my way. By morning I was inexcruciating pain, vomiting,

diareha. I went to my personal Dr he said I had some sort of intestonal

infection gave me an anitbiotic and sent me on my was. I was sick for months 2

-

4 weeks out of work back for 2 or 3 days. This went on till May. Then I was

fine. Oh by the way that's when I lost all the weight I carried as a kid,

went from size 14 to size 8 during that time period,

Shortly after that I joined the army. Had several minor bouts of terrible

pain and vomiting. Always said it was something you've eaten give me fluids via

IV and send me on my way. I went to Germany and met my husband of 14 yrs

there, got married then became pregnant with Cassie. That's when I started

really noticing things with my stomach. EGGS sudenlly I couldn't eat them or

anything that had eggs the main ingredents. Within an hour at most I was in a

ball

from the pain sometimes I'd vomit

sometime not. But everytime for days afterward my stools where the typical

smelly foul floating pale bulk mess. I never sought medical care, I'd just try

to meditate myself thew the pain like I had for so many other things. Other

things started to click to on foods. Fat, once I moved to Maine I really

noticed it, more so than down south. Mainers love there fried fish, clams and

shrimp. I'd got to lunch with my mom and have fish and fries at noon, by 2:00 I

made my 1st trip to the restroom and by 5 I 'd have gone at least 6 times.

So my life went on like this. i just learned to avoid things. At one point

our local Mc's changed from no fat back to low fat ice cream for there

cones. And that started causing me pain. Then in 1999 I got pregnant with my

3 yr old, broke my ankle in the 6th month, was on crutches for 5 months.

Anyway in the fall I twisted myself pretty good and hurt my back too. I wanted

to

go to a chiroprator for my back but my ob/gyn wanted to mack sure it wasn't

my gall bladder. Had an altrasound, everthing was ok, but said he'd follow it

up in a few years. A year and 1 week after my son was born Cassie had her 1st

attack. When we found out about pancreatitis I looked the Dr's square in the

eyes and said I have more symptoms than she does. They looked at me like I

was nuts. And still life has gone on I've had my problems and worked myself

threw them. Afterall, between Cassie's medical and educational issues who has

time to be ill. That was up untill 3 weeks ago. All hell broke lose with me.

I finally went to the Dr, no it wasn't when my pain was the worst but I did

finally go. Mike as well as all my wonderful friends here pushed me to go.

Thanks. So far my medical experience has been the complete opposite of Cassie's

and most of those here. I did have one thing the rest of you didn't have. I

had that peice of paper that showed my test results from University of

Pittsburgh saying I had SPINK1. Between that and Cassie's dx - it's been a

cakewalk

so far. Still waiting to see GI though.

Monday I take Cassie to Portland to see her GI. We have not seen him since

he did her surgery in Sept, prior to SPINK1 dx. I have tons of questions on

SPINK1 and i'm hoping he has some answers for me. I'm also going to talk to him

about her peditricians attitude about Cassie's pain, if he can't help us get

her a working plan in place than I am going to switch her local dr to mine.

Patty Hurst

Bangor, ME

Maine State Rep

PAI

[Guest guest]

Hi Patty,

Thank you so much for sharing your daughters story with me. It makes

me very sad to hear all the stuff she is going through. And me

having 13 y/o twin daughters I understand completely what you are

saying about the other kids picking & being mean to her. I'm blessed

to have my daughters raised to take up for kids when bully's are

picking on some unfortunate kids. They come home all the time & say,

so & so was saying some really mean things to so & so & I got in

their face & said, HEY! why don't you stop it now & start on me,

come one, I'm ready! The bully usually backs down & they tell them,

yeah, see thats what I thought. Now leave them alone & next time

come to me with your stupid comments! They come home with stories

like that at least once a week. I don't know if it is because they

have had to grow up living with a parent with a chronic illness, or

what. But I'm very proud of them for doing it.

I'm also sorry that you are having so many problems getting Cassie

the pain meds she needs. I've been sick since soon after my twins

were born in 1990, but was dx with cp until 93 and for years I had

problems getting the pain meds too. It really sucks, and I wish you

lots of luck with this....and PLEASE never give up trying! And you

being the wonderful parent you are I know you won't. If there is

anything I can do to help you, don't hesititate to ask, ok?

About this SPINK1......very, very interesting! I've never heard of

it, and you have my couriousity going now! Doesn't it just make you

so mad when these doctor have to question you all the time & give you

that look like, yeah, right! You don't know what your talking

about! I honestly do believe us lay-men know a whole heck of a lot

more then these doctors!

Thanks again for telling me all about Cassie. I wish you both luck,

and hopefully we can talk again soon! Bye for now!

Lots of Hugs,

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`

Good morning ,

Thanks for your questions about Cassie, she just turned 13 last month

and yes she has CP.

Patty Hurst