Re: (unknown)

October 24, 2001

tanxs

--- Mann wrote:

> Hey Rose,

> I am Jackie's mom...if you have read her story. I

> just wanted to tell you I hope you are better soon.

>

> Take care,

> --- rose Simonyi wrote:

> > i'm back...trying to catch up on all the

> posts...so

> > upset, missed my mri, so i'm still up in the air

> > about

> > how bad my cp is, and it will take months to get

> > another...couldn't help it, ended up in the

> hospital

> > with a infection that became the size of your hand

> > with your fingers spread...being diabetic sucks,

> > everything is so much worse...they had to cut me

> > open

> > about 5 inchs to drain it...still have about a 2-3

> > inch gash that a nurse has to come to the house ta

> > pack once a day...they let me out

> yesterday...still

> > feel like crap, but aiming ta go back to work

> > wensday

> > if i can...damn if its not one thing its

> > another...waiting impatiently for things to turn

> > around, maybe one day i'll be lucky LOL...hope you

> > all

> > are doing ok and sorry for that last post...was

> sick

> > and just getting so depressed over it all

> >

> > __________________________________________________

> >

October 24, 2001

tanxs

--- Mann wrote:

> Hey Rose,

> I am Jackie's mom...if you have read her story. I

> just wanted to tell you I hope you are better soon.

>

> Take care,

> --- rose Simonyi wrote:

> > i'm back...trying to catch up on all the

> posts...so

> > upset, missed my mri, so i'm still up in the air

> > about

> > how bad my cp is, and it will take months to get

> > another...couldn't help it, ended up in the

> hospital

> > with a infection that became the size of your hand

> > with your fingers spread...being diabetic sucks,

> > everything is so much worse...they had to cut me

> > open

> > about 5 inchs to drain it...still have about a 2-3

> > inch gash that a nurse has to come to the house ta

> > pack once a day...they let me out

> yesterday...still

> > feel like crap, but aiming ta go back to work

> > wensday

> > if i can...damn if its not one thing its

> > another...waiting impatiently for things to turn

> > around, maybe one day i'll be lucky LOL...hope you

> > all

> > are doing ok and sorry for that last post...was

> sick

> > and just getting so depressed over it all

> >

> > __________________________________________________

> >

November 12, 2001

I'm sorry but I don't know your name. Your story sounds pretty familiar

though, not that it will help you much.

I was diagnosed with CP a couple months ago, even though this was my

fourth attack over the course of twelve years. I've been through five

doctors trying to figure out what was wrong with me, but have had pretty poor

luck. Seems like the doctors that I've dealt with have not been terribly

bright either. But, like Kimber said, it's tough to diagnose and

unfortunately, it seems to be the last thing they look for... I don't know

why in the hell that is, but then I guess I'm more than a little biased.

My first attack was twelve years ago, and I've been having pain regularly

since then... and of course it's gotten progressively worse until just

recently I have had to start taking pain medication every day - all day - and

even with the help of narcotics, I am still unable to sleep, until I

literally just end up falling down wherever I am... which happened to me

today at a friend's house, which was really embarrassing.

I was helping move furniture when I sat on the sofa when folks were

taking a break... woke up ninety minutes later, and the room was empty,

except for the sofa and me. Everyone was gone.

Of course it's funny now, but I was pretty disgusted at the time...

disgusted with myself, this disease, my sleeplessness that even heavy sleep

aids don't help, the pain that makes me take narcotics, the constant back,

stomach and bowel problems, and nobody really understands - about the

sleeping problem or anything else, of course - except for the folks on this

list. At least most folks can relate to most of the things I've been

through, and if they've not been through it themselves, they tend to at least

be sympathetic and supportive. That, or they make fun of me. (Haha...

Okay... that part was a joke.)

My family all knows that I have diabetes, chronic pancreatitis as well as

acute hemorrhagic pancreatitis. They don't understand it, so we don't ever

talk about it.

So I've never seen a point in making them aware that I also suffered from

chronic cystitis of the gall bladder for several years before I finally had

my gall bladder removed - had hiatal hernia repair, or suffered from

esophageal hemorrhaging, esophageal verices, high blood pressure, chronic

depression, OCD, PTSD, chronic anxiety disorder, agrophobia, agoraphobia,

panic attacks, alcoholic neuropathy...

They just know that I'm sick again, just like I've been regularly over

the past several years... they assume that I'll have surgery of some kind, or

take the right kind of medication to get better. How do you tell your mother

that you will probably die long before she will, when you're the baby of the

family, and her favorite... or even when you're NOT either of those things?

I don't know. Maybe somebody can tell me.

They know there are lots of medicine bottles in my kitchen cabinet, but

they have not idea how many there really are. They don't know that each day,

several times a day in most cases, I take Verapamil, Oxazapam, Norvasc,

Catapres patch, Fentanyl patch, Nadalol, Efffexor, Triazolam, Pancrease,

Questran, Neurontin, Lorazapam, Prevacid, Famotadine, Oxycontin, and two

kinds of insulin.

They still assume that I'm the healthy, muscular, indestructible jock

that I've always been. (Now I just wear baggy clothes a lot. I'd be in big

trouble without oversized sweatshirts.)

So obviously as you can see I too feel sorry for myself a lot, and get

really overwhelmed much of the time, and often say to myself " What's the

use? " . But what's the alternative? As I see it, I don't HAVE any

alternatives... so I figure I need to just get off my pity pot and get my ass

busy livin'. In " Shawshank Redemption " one of the two main characters told

the other that " Either you get busy livin', or you get busy dyin'. " I guess

since a part of me is already busy dying, a larger part of me has to stay

busy living... and since I don't have much control over my pancreas and the

rest of my guts (other than taking the meds they tell me to, diet, etc; it's

still going to do what it will), I try to focus on the part of me that I DO

have some control over... My emotions, thoughts, feelings and my REACTION to

this disease and how I decide to live with it or not.

Well, like I said... Many, many days I don't have the energy to do much

about it. Thankfully, some days I DO have the energy and the wherewithal to

get off my ass and take some action. Go to support or 12-step meetings,

prayer meetings, work, exercise / work out, spend time with my cats, spend

time with my partner, my grandmother, my family; paint, shop, walk in the

park, go to exhibits and shows, theater, galleries, plant trees, shrubs,

flowers, mow, weed or trim, work on the outside of the house, clean on the

inside, cook, watch some educational TV, hit the library, spend time surfing

and catching up with e-mail, spend time at the Plaza, research this disease

and spend time on the phone working with the insurance company and the

doctor's office trying to figure out what is in front of me that I can do to

try to get better... and if Western medicine says that there's nothing

immediately before me, then I can get creative and find out what Eastern

philosophies suggest that I might do, many of them also very helpful!

Meditation, prayer, acupuncture, sand sculpture, work with crystals, etc...

Both lists are endless of course, depending on what one's interests and

beliefs are, and being a little bit creative helps, but primarily

determination and the desire to no longer spend my days sitting in my own

crap are the chief motivators.

It's hard, it's really, really hard. Anybody who says otherwise is

grossly in denial or just flat-out lying to you. I regularly think that I

may well be very close to becoming insane, and even think that perhaps it

might be welcomed sometimes... I'd have a good reason to yell and scream and

fight and kick until I got my own little private padded room with lots of

thorazine, or to just give up and lie in bed and not respond to anybody and

not eat and make them hook me up to a morphine drip... but of course I know

that also comes with " the tube " , the loneliness, the painfully dreary

roommates, the pity from family and friends, the looks and headshakes from

the nurses and doctors and even the orderlies, etc.; and eventually they kick

you out too and you're right back here - only further in the hole financially

and otherwise, still sick, still blue, etc., but maybe on a few more

medications... so that doesn't seem like a terribly good choice.

Looks like my best choice is to plug ahead, try to improve the

antidepressants that I'm on until I get a combination that works, get regular

exercise and work on giving my body something close to proper nutrition...

that list is much smaller than the one above when I look at it, so maybe it's

a better choice.

Good luck to you... The folks here are very helpful, very knowledgeable

and very sympathetic. Ask for help and you'll probably get it. Push your

doctors to get the help you need instead of feeling like a " victim " ; I think

that helps a lot, to feel like you're taking charge of your life, your body

and your disease. And that's about the best we can do... with one foot in

front of the other.

God bless.

Terry in KC

Now I'm very confused. This file was open, and I thought I wrote it several

weeks ago. So if you've re-read it, please forgive me. My concern is NOT

getting posted a note that follows that belongs to toosweet.... toosweet, I

don't BELIEVE this is new, correct>

SHIT!!! Are you and I both going to to have to RE-add vast recurring

brain-fuck to both our diagnosis along with the usual dependent diabetic,

chronic dependent diabetic, blah blah blah??? Or am I just further insane??

I mean, I've shut down this machine a dozen times, and it's crashed at least

that amount, since this file was open... No explanation why all of a sudden

it appeared open, unlss you might you sent it along... Any answers? Gad.

Dyin', losin' it all, fallin' apart, goin' insane and NO IDEA HOW OR WHY

NOTES APPEAR OR REAPPEAR. SHOOT me now.... Hahaha!

Coo-coo! Coo-coo!

<< how do you deal with all the mental anguish and

depression that comes from being sick all the time

(insulun dependent diabetic - 10 yrs and resent

chronic pancreatitis among other minor things) i swear

i'm going compleatly crazy lately i dont know how much

more of this i can take...works driving me crazy...got

no support at home, i swear they think its all in my

head...all the waiting for appointments with so many

idiot specialist (took them 8 months to figure out

whats wrong with me and i'm still going for more

tests)...all the pain...all the pills and needles i

gave to take...insanity is setting in ;o( >>

November 12, 2001

In a message dated 11/12/01 1:15:39 PM Eastern Standard Time,

trainrek4u@... writes:

> i'd like to join the chat room but i have the typing skills of a

>

Hit the chat room anyway , you don't have to type, just read to keep up

with the conversations,Poncho - GA

November 12, 2001

I was still wondering....has anyone had experience like I have? I had the

first attack in June of this year. I have had 7 or 8 after that. I had gall

bladder taken out in July. Had 2 subsequent attacks after that, with

horrible diarrhea and bleeding. Afterwards, I got a new gi doc in September.

He said it could take me a year to recover from the pancreatitis. All the

tests come back negative, the levels and enzymes and blood counts are all

normal. Then I started having diarrhea every 2 weeks or so, up to the point

on October 14 where it hit me non-stop for 3 weeks straight. It was coming

every 15 minutes to 3 hours. Worse at night, especially if I laid on my

right side. More tests: endoscopy showed excessive bile in stomach, no

reason. Barium exrays of small intestine showed nothing...still having

diarrhea, am on levsinex and lomotil, off the pancreas enzymes, and living on

darvacet. can eat bread, potatoes, non fat creamer with non fat cereal, egg

beaters, juice, that's about it. Intense chronic pain...

Any suggestions? Hints? Experiences? HELP thanks.

Marti

November 12, 2001