To ANYSE

[Guest guest]

I am very sorry that my subject line brought out so much anguish, but

I guess I'm glad that you shared with us how you felt. I find that

when I am mad, writing about my feelings help me deal with them

(sometimes).

I know that feeling of hopelessness and not seeing any light at the

end of that tunnel. Feeling like no one cares and feeling like your

head is going to explode because you can't deal with your desease AND

everything else at the same time. It feels like your trapped and that

you will never escape this prison your in, one where you just woke up

in one day, and one where you had no warning you were going to end up in.

Life is not fair and I can't tell you if it is going to get better for

sure, although all the chances are on your side, but having a positive

attitude does help in making it better. It's proven you heal faster

when you think positive. You can't change what has happened, but you

can change what will happen. If you wake up in the morning and you

choose to have a good day instead of a bad one, no matter what

happens, it makes it a lot easier on yourself. It's hard at first, but

it gets easier as the days go by...

As for your family, they are an absolute negative influence in what

you are going through, mostly your mother. If you can, and if you have

another support system, tell your family that their attitude is not

condusive to you getting better so you would rather wait until you

were healthier until you had contact with them again. From what you

said they don't want to see you anyway...

Anyway, this is only my opinion, I don't want to cause any problems

and I don't know the whole story. I am just thinking of your well

being and your mental frame of mind. You are a nice person that got

dealt the bad panreatitis card like the rest of us. Try to keep your

chin up girly!

Brigitte

[Guest guest]

Hi Anyse,

In what you wrote, please believe me when I tell you, I have been there, and

in many ways, still am there. What you wrote resonated with me in so many

ways.

I was bounced between two hospitals. Released from the first one after 3

weeks in ICU and a hellish week on a general floor. I was told to see my

regular doctor in 7 days. Pain, throwing up and fevers. I saw my regular

doctor and was immediately put back in a different hospital and ended up

there for 3 months. Drains and surgery loomed. Cat scans every other day,

morphine pumps. My wife came to see me if I was lucky, 2 or 3 times a week

for about an hour at most. She hardly worked during that time and I had no

money coming in because I was not working, obviously. When she did come in

it was about the pressure of our kids and when am I coming home. Bile duct

blocked and I had jaundice but that was all she could think about.

I came home on my birthday, Dec. 22nd. Family came to see me, but I really

wasn't up to seeing anyone. Christmas eve I was back in the hospital.

I was tired of the hospital and tired of hearing " when are you coming home. "

6 drains coming out of me. They would reposition them and that was always a

new experience in pain. There were several doctors down there and I had

them all. There was one that would make sure I had enough pain med so it

wouldn't be so bad and I finally had told them he was the only one I wanted

to do that procedure. There was one that acted like a bull fighter and I

was the bull.

I came home but it was like things had gotten worse. I was throwing up

every 6-8 hours whether there was anything in my stomach or not. I lost

over 100 lbs, and I cried when I looked in the mirror because what I saw was

not me. My eyes were sunk in. I was skin and bone. Every three days I had

to go back to the hospital to have drains repositioned, which meant on the

second day I had to go in for a cat scan. All I could do was lay in bed and

hope I could make it to the bathroom to get sick. Many times I just kept a

bucket by the bed and got sick there. And I prayed that if this was what

life was going to be like from now on, then I begged God to take me.

I've stopped even talking about it to anyone except my doctor, and this

group. I have gotten the same thing from family like you have gotten from

your mother. I've gotten it from my wife. (And she suffers from MS, so you

would think she would have some understanding!) Instead of hearing that

kind of talk from them, I've chosen to just say, 'everything is fine.'

I had discovered what my wife had not done while I was in the hospital, like

pay bills, run bills up, etc. She had taken my company credit card and used

it for food and gas. She did tell me she charged like $300. In reality,

she had charged closer to $2000. Because it was American Express, which was

to have been paid monthly, by then they had closed the account. The

electric bill had not been paid and they were going to cut us off, too.

This was my welcome home.

The only thing I could do was go back to work. It was highly, well, it was

wrong for me to do, but I got the doctor to give me a release to go back to

work and I did. I stuffed the drains into pockets of an overcoat and went

back to work. I had a business of repairing and building computers which

was all but dead, and I had a part time job driving a school bus. That is

what I went back to. I had to stop a lot and throw up with kids on the bus.

When I came back, there were those who thought I was new because my

appearance had changed so much.

I know exactly what you mean about death almost being preferable because I

have felt, and still sometimes do feel that way.

Along the way, the throwing up became less and more things became tolerable.

Some are not. My kids are what I live for now and I just know I have to

keep pushing on. I know right now I am not getting the best health care and

I am in pain frequently. Maybe it is my believe in God that gets me through

and a believe that someday will be better. I am not sure.

I know this group helps me, just knowing that I am not alone, and it is not

just in my mind, and it is not me just wanting drugs like some of the

doctors made me to feel.

I know that life should not have to be this way. I can't tell you it's

going to get better, the only thing I know for sure is I have CP. The

doctors told me that is a fact of life for me, and I don't like it. I don't

like that it totally changed my life. The only thing I can tell you is I am

not giving up. There are still things I have to do, and there are still

things I do want to do.

Pancreatitus seems to have its own agenda, and of the three major attacks I

have had, they have never seemed to appear the same way. The pains were

different so I have had no real indicator until it was too late.

I am going into a different profession now, because I am trying to save my

house. Its going to mean being away from home for weeks at a time. I don't

know how that is going to work out but it is what I have to do at this time.

I pray every morning for help to just get through the day, sometimes just to

get through the hour. I've been doing that for over a year now. I've had

setbacks, but it is a year later. A year ago, I couldn't see being here a

year later.

I don't know if you will find encouragement in what I said, I hope you do.

You are not alone, and I know that knowing that has helped me get through my

darkest thoughts.

In closing, your post resonated to the deepest fiber of my being, perhaps

because you were able to say what I have felt but couldn't or wouldn't say.

As such, you have been in my thoughts and I hope that as you read this

things are a lot better today, and there will be better tomorrows.

-Bob

Potter

bobpotter@...