Knowledge is Empowerment

[Guest guest]

You wrote, " Knowledge is power, and having some kind of power over this

horrible disease makes it more bearable. The genuine concern of PAI members for

one

another is another big help in dealing with CP on a daily basis. in

Hawaii "

it is always so good to hear from you. I was just thinking about how

imperative knowledge is towards our ability to make informed health care

decisions. It is interesting, however, that as much promotion 'patient

education' has

received, it remains difficult to obtain information about the details of our

own health status. This is in regard to our lab values, our medical records,

etc. There still continues to be a sense of uncomfortableness with the doctor

when they are asked what the results of a test were. In my case I often hear,

" They were okay, except this or that was high or low. " The data of exactly

what the results were would provide me with important information, particularly

to see where on the scale I was. It can also provide motivational incentive. It

seems like the only value they freely give is the A1C, though I still

receive, " It was normal. "

Another interesting point is that I had to obtain a new PCP a few months ago.

When I arrived for my first appointment, upon initial interview with the

doctor he quickly became overwhelmed. I then, relieved his anxiety when I

presented him with a copy of my 'personal history and physical' which I maintain

myself, a list of the name and address of every provider I have ever seen, the

date, reason, and outcome, as well as a copy of the medical record for those

visits, hospital visits included. Wow, they were impressed.

So, upon leaving, when I asked if I could expect to receive a copy of the

medical record for this visit when I came for my next follow up, I was very

surprised when the doctor said, " Um, well ... we'll see. " Did I hear that

right???

He sure appreciated the records the other providers had given me. It turns

out it is another " secret society. " Knowledge seems to be on a need to know

basis. They are very careful what they tell the public. Heaven forbid, patients

know the status of their health.

Back to your comment, " Knowledge is power, and having some kind of power over

this horrible disease, "

That is true. And, that is why we are probably so sensitive when someone is

trying to rob us of the small semblance of control we have at all.

Please know that you are appreciated, and though we don't have any other

members from Hawaii (that I know of), you are a great Hawaii Representative.

Karyn E. , RN

Executive Director, PAI

http://www.pancassociation.org

Pancreatitis Association International