Re: Re: Positive support / encouragement / Patty

[Guest guest]

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-

[Guest guest]

In a message dated 12/1/02 5:05:28 PM Eastern Standard Time,

karenw@... writes:

> . 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.

>

>

Dear , I completely understand every word and emotion that you have

expressed. I believe that the pain and worry I saw in my daughter's face was

a huge factor with me making the decision I made. I couldn't stand to see

the worry any longer in her face. My suffering broke her heart, my husband's

heart and my heart was broken from seeing them suffer. We have been through

so much and the suffering has brought us closer together. We have a bond

that is so strong. Our feelings go so deep. Nothing can ever break that.

Shirley