Re: Patient education to

[Guest guest]

wrote:

> We are all very fortunate to have found one and other but I truly

feel that we are the minority and that there are many many people out

there suffering alone in silent desperation wishing somebody some

where understood.

,

How right you are! I remember talking with one of the nurse's I met

at Mayo Clinic after they did my CT-scan last year. She had asked me

why they were doing the scan and I told her I had CP. She said that

her sister had it, and was doing miserably with it, and was finding it

so hard to find help or talk to anyone else who knew anything about

it. She asked me how I could have such a good attitude and seem to

know so much about it, so I told her about the PAI.

I didn't have my PAI business cards then, so just wrote down my name

and directions to the website url, hoping that this woman in Florida

would find us. I gave the information to the nurse to give to her

sister and don't know if she ever tried to join....but I know there

are just so many out there like her who need more help.

Finding this support group was my salvation when I first learned I had

chronic pancreatitis. I couldn't believe that there was a source of

help, education and support, and my first questions to the board were

so naive, but I was scared to death about what was happening to me.

The people I met here were the friends that understood and knew how I

felt that couldn't be found where I lived. That was a long time ago,

and it is still the same, yet see how much I've learned just by

sticking around the PAI....it's amazing!

If we could just find a way to reach everyone who has to go through

those first days of desperation, then Karyn's mission would be

complete. We are truly blessed to have each other, and if I think too

much about how the people here have given their support, love and

concern each day, the tears will flow....

It's just one of those moments that the truth overwhelms me. Oh my, I

better take a breather.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina Rep.

South Eastern Regional Rep.

PAI

Note: All comments or advice are based on personal experience or

opinion, and should not be substituted for consultation with a medical

professional.