How am I suppose to live with this terrible disease?

[Guest guest]

Hi, I completely understand as do most of the people here about the

mistreatment of so many of us no matter how our pancreatitis was induced. It is

such a

debilitating thing to deal with. I find that the things that help me are

little things. Hot baths, heating pads and a good book. Those things help me to

cope and bring me pleasure. Cross stitching, crocheting anything to keep my mind

off of my pain.

I also have my family to keep me busy so that helps. I also work. (As much

as I can!) IT must be hard having such a physical job with this illness. I live

on the other side of the USA so I don't know about docs in your area but I am

sure someone on here can help.

Welcome to the group and I am wishing for better days for you!

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]

I'm a 44 year old woman, just got my last daughter off to college.

I have had 2 major acute pancreatitis attacks in the past 3 months.

Last week I had a psuedocyst removed and I'm just feeling worse

everyday. Does anyone have some tips for coping to share?

Does anyone else feel like the dr's and nurses all feel that your an

alcoholic when they hear pancreatitis? I haven't had more than a

dozen drinks in the last 10 years.

I live in far northern california and I'm trying to find a good dr.

Hard to do up here. I'm considering going to stanford medical center

(6 hrs from here)but of course there is the travel & motel costs. I

am unable to work. I have a physical outdoor job and am waiting for

disability. Meanwhile the bills are piling up. (well enough whining

for now). Has anyone had any experience with stanford? Please let me

know. As you can see I'm just having a hard time with this!

[Guest guest]

Dear Rhonda,

The little history you gave us sounds so very much like my beginning

with CP four year ago, so I just had to write and tell you a little

about myself and how I've coped.

I was just 49 and our youngest child was just graduating from college

when I had my two AP attacks, 6 weeks apart. They found two

pseudocysts with me, both of which I still have because they're

located in positions that are out of reach for any conventional

drainage, and surgery was also out of the question because of the

abnormal positioning of my pancreas.

The first really important step for you, Rhonda, is to find the best

pancreatologist, or gastroenterologist who specializes in pancreatic

problems. If you can make that a priority, it will make a big

difference in how you cope. That physician will understand the

disease and the best methods of treating it, both with diet and

suitable pain medication, which should allow you to function as well

as possible. If you're feeling worse every day, it may be that you

need some help with a more suitable pain medication or your diet. Are

you taking enzyme supplements? These can make a big difference in

your pain levels, as well as the right antioxidants that help to

reduce your pancreatic pain. If you have any questions about diet,

antioxidants or pain medications, I'd be happy to explain to you what

has worked well for me in all of these areas.

The other really important step that will make a HUGE difference in

how you cope, has to come from within. It's not a " step " really, it's

a state of mind. You have to approach this with a positive attitude.

This seems hard to find in the beginning, because you're suddenly

thrown into a whole new lifestyle that's loaded down with new rules,

adopting a new diet, having to give up activities that were a part of

your daily living, having to deal with horrible pain and discomfort on

a daily basis, having to deal with people who don't have a clue about

what this disease is and the way it affect you, having to deal with

biased and uneducated medical professionals, and the list goes on and

on. If you don't have the right attitude supporting you, and find an

inner strength that you never knew you had, living with CP could very

well overwhelm you. Yet, I've found that if you have that strength,

and the right state of mind, you can continue to have the best kind of

life that a person with any kind of chronic pain condition could ever

hope to.

If you are religous, you will find new depths to your faith, both in

God and in yourself. Use it! If you aren't, please take no offense,

I'm not here to " preach " , I'm only telling you what has worked for me.

Another important part of dealing with ANY new problem, is the support

you get from others. Either family, friends, or technical advice. A

compassionate doctor can be most supportive, and a group like this one

can lift you out of some of your worst moments, if you let them. We

have a terrific, involved, and highly experienced group of individuals

here that are always willing to listen, and to help each other out,

either with advice based on their personal experiences, their

technical knowledge and research, or just what they think or feel

would be helpful. All you have to do is ask, and here, there's no

stupid question, or stupid answer.

You are going to live, Rhonda, and you can live very well. All you

need is your inner state of mind telling you that you can deal with

this, and that you have your friends here who will help you every step

of the way. I'm 53 now, and my pancreas has burned out, I am an

insulin dependent brittle diabetic, and I still have those pesky two

pseudocysts, yet there is much joy in my life and usually a smile on

my face.....(less wrinkles than frowning....lol!)

Share your fears, questions and comments with us, and we'll do our

best to help you find that inner peace that will help you adapt.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

hhessgriffeth@...

SC & SE Regional Rep., P.A.I.

www.pancassociation.org/anthology#Heidi.html

Note: All comments or advice are personal opinion only, and should not

be substituted for professional medical consultation.