To - Hello to All

[Guest guest]

Hi ,

I am sorry that you are still so sick. I was hoping that the new guy

in Boston was going to have the answers for you.

The only thing that comes to mind when you mention that it could

be something else going on along with the CP and SOD is that

maybe you need to consider going to a place like Mayo Clinic

that is able to do a complete body systems analysis with the

idea of checking everything - with no presuppositions, I think. I

have heard that they will do days, maybe even up to a week's

worth of poking, probing, testing and examining, if that is the

desire of the patient. I am not sure how you go about learning

more about this program or how you get an appointment. It may

be by referral, but maybe not. I would think that if you go with the

broad diagnosis of unknown abdominal pain and nausea status

post gallbladder surgery, biliary and pancreas sphincterotomy,

that this would be broad enough to not prejudice their thinking.

Just an idea.

You are right that the severity of your illness and its quick

progression seems out of the norm, but every one is different

and you do not know what else is coming to light as a response

to your body's weakened state. Something else may have been

present all along but never showed itself until you had this other

problem...or maybe it would have shown itself no matter what

just because it smoldered long enough and the gallbladder /

pancreas issues are diverting attention from it or is confounding

the issue. Although other's do not have the same experience

you have had, it does not mean that you are " crazy " or making

things up or have no wish to get better. Sometimes this is just

the way illnesses work. For example, a person can have a mild

case of scleroderma and only be bothered slightly, or she can

have a very fast progressing, severe form and be dead in 8

months. You just never know how the individual's unique

make-up will affect a course of illness. There are so many

things unanswered when it comes to diseases.....

Regardless of what your doctors are telling you or implying, it is

up to you to figure out how you are going to deal with it. There

are pros and cons to adapting to what you have and there are

pros and cons to pursuing very aggressively the right doctor and

the right treatment. I think that portions of each thought are

good...but how to apply that to your life, I haven't the foggiest idea.

I know that a mutual friend of ours believes in fighting to the

death....even if it means seeing a hundred doctors in a hundred

days...and there is sound reasoning behind this. Our doctors do

not know everything about health and sickness and they often

get " lazy " when it pertains to chronic illnesses. Because there

are no quick fixes....and because each individual reacts

differently so that so-called textbook presentations can be mere

myths, doctors are easily stymied and are quick to push you

away. At the same time, the energy that it takes to keep looking

for the right doctor with the ability to see the big picture and not

get tunnel visioned is also a drawback to the whole

process.....There just is no easy answer.

In my case, I feel sick every single day. Some days it is

unbearable nausea, some days it is the pain and other days it is

both at once. But after five years, I finally had a month break

where I was able to hardly think of my problem at all. However it

all came back, and worse, about two weeks ago now. But

compared to most people who contribute here, I have a very mild

form at this time. I can usually suppress or manage the

symptoms so I can function, albeit at a lesser capacity then I

would like. If I compare my life now to what I had before all this

happened I would wallow in sel-pity...which I do at times. I am

nothing like I was, with loss of friendships and family to go with

it. But then, I realize that there is no predicting what will happen

and the idea that " if only I didn't have that stupid surgeon, I would

have a wonderful life " is self delusional. Instead of this, maybe I

would have had a car accident or another calamity. There is no

way that you can rationally claim that what is today, is because of

one singular event so many years ago........

That being said, I realize that I am not suffering to the same

degree of disability that you are and that my comparision to you

may be less than helpful. Although comparing notes can be

helpful, don't get bogged down in what is " normal " CP or SOD. I

don't think there really is such an thing.

Laurie

(I missed you too)