Re: Laminated Pancreatitis Card--Laurie

[Guest guest]

Laurie,

Point well made about the bracelets! Your emails are very concise and well

written by the way! I know I am new here but I appreciate how well versed you

are when you write!

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

How are you feeling these days Laurie? I hope you are ok. I really

enjoy reading your posts. You provide such useful information and

word it so well. I appreciate that. How have things been since

your visit with Lehman last month? I know that you were less then

pleased and I just wanted to check to see how you are.

As far as the laminated cards go. A few weeks after I had the

surgery I received a card in the mail from my insurance co stating

that I had a transplant. I wasn't expecting that. Anyway after

reading all ya'lls post about the cards it had me wondering why a

medic alert bracelet might be useful. Does anybody here where

them?

I dont know how one might go about getting one of those bracelets

but I think if I have another hypo seizure my daughter is going to

make me get one. Luckily my sugars are fine, a little high lately

actually. I hope that is not a bad sigh.

Take care of yourself Laurie and if you ever need my help with

anything, please dont hesitiate.

Warmly,

Chrissy

[Guest guest]

Hi Chrissy,

Thanks for asking! I really appreciate the personal dialog and

contact. I am glad that for the most part you are recovering fine

from that scarey surgery. I hope you continue to do so well. Are

you making insulin now? Have you figured that out as being a

cause for your fluctuations? I sure hope those transplanted cells

are finding a nice home and getting active and reliable!

The thing I noticed with me...is that my pain or bad day

fluctuations are a little wilder. The bad days seem to " badder " ,

the good days have a higher unmedicated baseline pain level

but for some reason, the medicine seems to be working better at

knocking that higher baseline down...if that makes sense. The

nausea though seems to be pretty awful....getting worse at night.

Waking me up most nights with that " oh my gosh I am not going

to make it to the bathroom in time " feeling...but if I triple up on my

zofran I can calm it down enough to sorta sleep. I am wondering

if that could be from the enzymes? That is the only thing new that

I am trying since my visit to Dr Lehman.........It wasn't so much

that I was disappointed in Dr L per se.....more that I was

disappointed in the whole aspect of still not having anyone who

is taking the ball and saying that I deserve to be treated. It is so

frustrating to know that I should have a real doc monitoring my

abnormal blood values (instead of just me) and not finding one

who believes the same. I feel that there is so much professional

butt covering going on that no-one wants to treat me because

then they have to admit that my surgeon was a quack.....and no

one wants to do that. That is why my pain doc here thought it

would be good to get out of the system.....where there isn't as

much likelihood that Dr L would be covering for the surgeon

here.

Can you tell that I am thinking self defeating thoughts too

much...the whole pity me? I usually don't do that but it is hard to

feel so alone with this as far as knowing there is no medical

professional in this country that is willing to treat me when things

get more than I can bear. I think that is what you were sensing in

my last post to you......But I am a big girl and I can handle it and I

am just keeping my fingers crossed that I never have an

emergency with this again.

I guess that is my motivation too for supporting the card....as a

counter-action or complement for the very flawed " Evidenced

Based Medicine " that has become the normal approach for

treating people....and that if you do not fit the statistical analysis

for symptoms and causes, etc...you are not given the attention

that you need at that particular time. I think that would be a very

helpful cue for ER docs...to have a personalized flow chart that

mimics the one they use in the ER for the more " normal "

pancreatitis - one that flowcharts the " abnormal " pancreatitis ER

patient....which I think all of us with CP fits into. So we could

make it the new " normal " chronic pancreatitis flow chart !

Laurie

(the problem with those bracelets for CP is that it would only alert

EMS that you have CP but would fail to provide them with the right

diagnostic and treatment plan for our unique cases, at least how

I envision the laminated card as working).