Update / Welcome New Members

[Guest guest]

Greetings to Everyone,

Well, it looks like I may have surfaced. If I don't over do it, however. I am

trying to balance my time between managing my disease, family, the message

board, and working in the " office. " Lordy, we are busy. I am grateful for the

toll free hot line. It is definitely getting use. And, I am happy for that. I

just wish I had better answers for the people who call....persons with

Pancreatitis, family members, hospital social workers, insurance case managers,

and

others. I wouldn't be doing this if I didn't love it.

There are some things that you could do to help me, though. Many of the phone

calls I receive have to do with getting information and data. Most have just

been diagnosed others have been hunting for help for ten years. I need your

help in collecting information for me to give out to inquiries. If you look to

on the left hand side of the Yahoo page click on the " database. "

There is databases asking for various information. A big one is the doctor

database. Yes, there are a dozen websites that offer doctor databases, but they

aren't screened. Doctors are put into this database only if they pass your

approval, knowledgeable, skillful, polite, respectful, etc.

Another database has to do with a list of pancreatic knowledgeable hospitals

and medical centers. Again, if you have been pleased with a facility please,

please add it to this list. When people call I usually walk them through and

navigate them to the databases. Hey, New Jersey? You must be a hot state. Three

inquiries have been called in from people from New Jersey today!

Let me know who is willing to serve as a contact for the PAI. It is more

effective for you to talk to someone who is calling when you live in the same

city

or state as the caller. Usually what happens is that people call and then

they start referring to towns and counties that I am not familiar with. So I am

not very effective telling people where particular places are located. Gosh, I

am lucky if I even know where the states and countries are located without

cheating. I should have paid attention in 5th grade geography. Remember that

blank map we had to fill in?

Tull is working on getting the registration form on line for persons

interested in more formal membership into the PAI. That will help us better

serve you,

as well, when we know where people live. One example is the location of the

annual symposium, once it begins to circulate around the country.

Another way you can help is if you have an unlimited long distance telephone

plan. We have a very large telephone support network. These persons do not

have a computer. (Can you imagine? ) I can only imagine their loneliness. The

Laurie Foundation was developed out of this predicament. She died, lonely,

alone,

in the middle of Indiana farm land, with no way to communicate to the outside

world. Her husband loved her, but we all know, there is no way for him to

have understood the depths of this disease. Right now, until resources can bring

the Laurie Foundation to fruition, persons with Pancreatitis, who have a

telephone depend on the contact received through phone calls. Most do not have

long

distance so they can only call toll free numbers. like the PAI @

. Volunteers are needed to donate some time and long distance to

reach out and

touch others less fortunate than those with computer access. Let me know.

I do want to thank all the people who have diligently welcomed new members on

the message board. Just FYI, for every new person who posts to the board,

there are about 6 who sign on and lurk. Which is fine, please don't feel like

anyone has to post. I just want everyone else to know how many there are out

there. Many of the representative, particularly the Regional Representatives,

regularly welcome them one on one by email, and I appreciate that so much. I

don't

tell you enough, how much that means to me. Thank you.

I also appreciate the positive messages that are being posted. There are some

incredibly intelligent members here, and when a question is posted, they are

always eager to share see if they can help direct you to resources. The PAI

mission statement states that we " provide support, education, and advocacy. "

Thank you to all who honor that and don't attempt to persuade or make decisions

for people, since we don't really know your situation. You also do an

incredible job when providing support on the message board and using the chat

room or

IM's for personal communication. It is difficult to maintain a warm, caring,

milieu and stay on topic. But you do.

As I mentioned we have several new members everyday, that the general board

is not aware of. Many unsubscribe in a day or two, or maybe a week or more.

Their feedback is that they were not able to handle the number of messages in

their mailbox. I know same old story. I have mellowed about streams of attached

posts on posted messages. Those who know me, have to agree. But, unfortunately,

many people who sign on are not familiar with the computer and do not know

how to do " No Mail, " and unsubscribe. Often times, when I contact them they

return when I show them how to set their mail deliver status. I forget to post

this on a regular basis, so maybe you could mention it, so more will know. Even

for those going on vacations, you cab change your mail delivery to " No Mail "

instead of unsubscribing and then just reset it when you get back. There are no

requirement, though, so do what works for you. I just want people to know

there are options.

Let's see....hmmm? Yes, I can't sign off without giving a public thank you to

the Top5Plus5, which is the PAI's resources and Library of Information. Mark,

thanks for keeping us up to date. For those who don't know, if you have a

question, he'll find the answer.

I hope I can visit the board tomorrow and come to the chat room some time

this week. Anyone who wants more information about anything I mentioned, please

let me know. There are a lot of volunteer positions and activities I didn't

even mention. I have gone on for too long, already. (LOL, hopefully, you'll

delete this post before sending your response!)

One more thing. I really need to a telephone support person for burg,

PA area.

It's a blizzard here in Indiana.

Karyn E. , RN

Executive Director, PAI

http://www.pancassociation.org

Pancreatitis Association International