The Uncertainty

[Guest guest]

Doc,

You wrote, " Now we never know when it's going to strike. She's

tired

of the uncertainty and of course the pain, not eating, taking Vicodin

pills for 3 or 4 days straight etc etc etc,,,, you all know what I

mean. It's just not the way she chooses to live anymore,,, we are

reluctant to travel on vacations which we did on a regular basis

being retired. "

I certainly understand what you are talking about. I loved to travel,

I still do, but that came to an abrupt halt after I was diagnosed, as

well. It took years to finally feel like I understood the disease

well enough that I could put myself at risk and be out on a limb away

from the health care providers I knew and that knew me. I ended up in

an unfamiliar hospital on a couple of occasions. It was not a

pleasant experience for either of us.

The most serious issue is that this is a life threatening disease.

There are not qualified Pancreatologist in every city, USA, or

country, as we all know. A wrong decision could put me in a

precarious position. As much as I wanted to be in control, I knew

that I was dealing with something bigger than I could handle. It was

imperative that I turn over the care and management of this disease

to someone who knew what they were dealing with. That did not mean I

was not involved, but on some level I had to trust someone. Finding

that someone to trust was difficult and took research and time. If I

could not pull up a doctor with a quick web search, read their C.V.

and an abstract of their latest published research project, then I

was, not hesitant, I was terrified, of putting myself in their mercy.

This was equally true with their colleagues, who would inevitably end

up caring for me at some time or another. This, therefore, prohibited

any travel. Family & friends also were not enthusiastic about having

me visit or be in their company if a crisis would occur.

As I became more familiar with the disease, treatment options, felt

more empowered with my relationship with the healthcare providers, I

started to test the waters outside the confines of my comfort zone.

After a while, I realized that this disease cycles. As long as I had

a place to `perch', I am more comfortable excusing myself

from any

activity and waiting it out.

It does not really matter what anyone says, though. It is still hard

to accept that once I was diagnosed with pancreatitis….life, as I

knew it was over. Survival required me, however, to make a decision

to redefine a life I could accept within the parameters of living

with this illness.

Karyn E. , RN

Executive Director, PAI

http://www.pancassociation.org

Pancreatitis Association International