I think I am going to cry - to Pat

[Guest guest]

Pat,

If you need to cry, then do it! Sometimes letting that go and having that good

bawling session is the release we need........I can't tell you how many times in

these last few years when the obstacles and frustration seemed to pile too

high for me to deal with, and all I wanted to do was curl up in a ball and cry

my

eyes out. It won't hurt ya if you do it, and it might make you feel better!

I've

found that the only drawback to that afterward will be red, puffy eyes, a runny

nose and new resolve........to not lose my determination and strength to fight

this thing through!

The fact that the doctor has a CT-scan set up for Monday is a positive sign.

Do me a favor, though, and just because I told everyone that they only make

you drink water before a pancreas CT-scan at Mayo, don't put up a fuss at

them when they ask you to drink one of their obnoxious pre-scan cocktails!

You just want the film done correctly and a clear picture, so do whatever

necessary to help that happen. Another word of experience about CT-

scans....although I did say that they are the most definitive non-invasive way

of looking at the pancreas, they can sometimes not show that something's

wrong. I've heard of it happening with other people, and in my personal

experience, when one radiologist did my CT-scans two years ago, he missed

the second pseudocyst in my pancreas. He clearly made a mistake. 12

earlier scans showed two pseudocysts, but when he took the pics, he only

filmed one, insisted that there was only one, and even signed the bottom of

the report verifying that.

It caused a lot of trouble because I was seeing a new GI at the time and the

doctor had worked with this radiologist many times in the past and had total

faith in him and his work. And there I was, a brand new patient of this doctor,

someone he'd never treated or worked with before, and I was telling him that

the radiologist didn't do his job properly, that there were two pseudocysts, and

his collegue was wrong! Fortunately the doctor settled the dispute by having

yet another radiologist do another scan on me, and lo and behold, that scan

showed two pseudocysts as clear as daylight!

I'm only telling you this to prepare you for the worst that could happen. I

know

you want them to see something that will validate your pain and symptoms -

even if it's " bad " news. I've been there, too. When I was so sick for three

months from late December to March of 03, in horrible pain, lost 30 pounds,

couldn't eat, couldn't sleep, was literally fading away from sickness.....I was

desperate for an answer, the doctor kept saying he couldn't find anything, he

didn't know what it could be, etc. etc. All I wanted was an answer to what was

happening to me so that I could look it in the face, deal with it, and get the

right treatment for it. When the answer came, (diabetic ketoacidosis and Type

1 brittle diabetes), in all honesty........I felt a sense of relief. Although

it was

very bad news, it WAS the answer to what had been happening to me and

once I knew that's what it was, I was able to confront it , and knew that there

was treatment for it.

It's the uncertainty that frazzles you, the fact that you know something's

wrong,

you can " feel " that something's wrong, and your body is surely reacting as

though something's wrong, but without a name for it, you have nothing. It is

very, very difficult for someone to be in limbo like that.

And don't worry about textbook symptoms.....I don't think there really ARE any,

because I've seen too many variances in symptoms and in the way the

disease progresses between one person and another just here in this group

to know that none of us fit the textbook.

As far as your weight situation goes, we've all had our battles with that, too.

I

was 128 when I started CP, and had been within 5 pounds of that weight (up

or down) all my adult life (excluding pregnancies). In my CP years, I've lost

and gained 60 pounds so far, (lost 30, gained it back, lost 30 a second time,

gained it back). That's why I keep 4 wardrobes in my closet......LOL! The most

important thing you can try to do is keep up your water intake to keep that

pancreas well hydrated. If you can slip in some Ensure, Boost or Slimfast

along with your broth, jello and saltines, try to do so! If you can tolerate

pills,

you could try taking one or two 1,000 mg. fish oil capsules each day. Those

were the key to my gaining back my weight this second time.

Pat, feel free to vent whenever you need to. We all do really understand, and

I don't think you'll find a more caring and empathatic group of people than

those who are sitting in front of their computers now reading this. Every

single

one of us has gone through the frustration, fear and confusion that you're

feeling right now, there's even probably several others out there who are

feeling the same way today, or tomorrow, or will be next week. Just know that

we're here to support you, and help you get through this obstacle, and the

next, as best we can. Please let us know how things go on Monday, and

when you hear the results from the doctor on the scan, please share that with

us, too. We'll be listening.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE 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.