Re: Re: Positive support / encouragement / Patty

November 29, 2002

In a message dated 11/28/2002 10:09:50 AM US Eastern Standard Time,

Rattpack1@... writes:

> >>> Our hope are that if we can find out why she has CP that maybe it can

> lead us in the right direction for relief......As a race we say that we a

> human, how can that be when Drs let CP suffers live in agony for days on

> end. year. ...This causes additional problems with school. First you get

> well if she's in that much pain she shouldn't be here then they come back

> and say " why isn't she in school, she's missed to much. .....<<<<<

I understand how important a good diagnostic name or code is in selecting

many of the components to the treatment plan. And, you are right, you need to

be one of the primary members of your health care team.

People have suffered for centuries with this disease. I really appreciate all

of your support and active involvement to help the PAI really actually do

something and make change happen. Organizing the youth as PAI spokespersons

is in the plans for the forefront.

>>>Cassie is also very involved in the decisions made regarding her CP and

what

> the future holds. Please let us know what we can do to help further the

> legislation you've been talking about. <<<

I think that is great that Cassie and so many of the other children /

adolescents are so involved. There are several areas of discrimination

against people with Pancreatitis. I registered Chronic Pancreatitis with the

Association of Invisible Illness because children and teens are often not

believed when the try and explain that they have been too sick to attend

school. Adults often loose their jobs for calling into work when they weren't

sick. Many people who deserve disability do not receive it, because the

judge thinks they look 'just fine.' The PAI is working to change the ICD. 9

coding on Pancreatitis to facilitate this process. You actually addressed all

of these things in your post.

Karyn

Karyn E. , RN

Founder / Executive Director

Pancreatitis Association International

Corp. Office: Indps, IN, USA 1-

December 1, 2002

Karyn,

Your post made me think of something. The 'looking fine' is often really a

problem. In addition to my problems with pancreatitis, I have systemic lupus.

For the most part I look very healthy. People are often shocked to hear of my

health issues. However, those who are close to me and care about me can

normally take one look and see when I'm having a not so good day. One of the

ladies at church told my mom, " looks so pretty. She has always been

pretty but with the weight she has lost, she looks even prettier. However, when

you look closely at her face, you can tell that she is not at all well. " I felt

this was a very kind thing to say. This lady obviously realized that even

though I was dressed nice and looked attractive, the health issues are very real

and taking a toll. My daughter and her fiance were home for Thanksgiving. I

had not told my daughter about losing the last 6 lbs I had recently lost. For

one thing, at 163, she and I weighed the same thing. She really struggles to

keep her weight around 160-165, which at her height is a nice size. I didn't

really want her to know that at 157, I'm not 6 lbs lighter than her. I also try

to minimize things with her so she doesn't worry about me. She took one look at

me when they arrived Thursday evening and exclaimed, " Mom, you've lost more

weight haven't you? " The worry in her eyes was evident and it broke my heart.

I admitted to her that I had lost more weight but that she was not to worry

because I have been eating better the last couple of weeks. She hugged me and I

could see the tears forming in her eyes. I told her that I knew God was with me

and that I will be fine. She said, " I sure hope so because I can't stand the

thought of losing you. " I assured her that I will be around for many, many

years to continue making her crazy. Even now as I write this, I am fighting to

keep the tears away (and not being real successful). Seeing the pain and worry

in my baby girl's eyes has been the most difficult part of this. I had been

doing a pretty good job of minimizing to her the toll this is taking on my body.

However, it took only one second for her to see it when she looked at me. She's

not quite 21 years old and I so do not want her to have spend her time and

energy being concerned about me. I know there's nothing I can really do to

prevent that other than what I am already doing and that is to keep a positive

attitude about all of this.

W

December 1, 2002