Pancreatitis / Lifestyle Limitations

[Guest guest]

Shybasset,

Well, you certainly are asking a lot of good questions. And, you have come

to a place that will give you straight answers. I often wonder if we are too

honest. It can be a lot to 'digest' at once.

At any rate, you have touched on a sensitive issue for me: how much does

this disease limit my lifestyle? I could write a thesis or I could simply answer

in one word: A Lot! That is mainly the whole reason that most persons with

chronic pancreatitis end up requiring disability. How and why it limits our

lifestyles can vary, especially in what we considered to be the biggest

detriment to being normal. There are also some common threads.

Besides the chronic pain and narcotics that interfere with my ability to

fully participate in the world around me, church, family, work, friendships,

etc., has to do with the complete inability to make any plans. I never know how

I am going to feel from one moment to the next, much less, one day to the

next. I use the word " dipping. " I can be out with Tull having a good time, he

can

look away for a second, then look at me again, see me looking miserable, and

only needs to ask, " Are you dipping again? " I try and incorporate this

problem into my planning, (if you can call it planning) by making sure I always

have a place to " perch " wherever I am. I haul my emergency medication box with

me wherever I go, have a pillow, change of clothes (for diffuse sweating or

emesis) and underwear (for sudden diarrhea). Going anywhere is such a major

ordeal, most of the time I just stay at home. It just isn't worth it.

That, unfortunately can make my depression feed on itself, so I do force

myself to get out of the house, even if it is briefly. Of course, doctor's

appointments come up frequently enough, so I claim those outings for my out of

the

house activities. The reason for this, though, is that I am only physically

able to handle one big activity a day. And, 'big' means going to the grocery

store, doctor's office, hospital for lab work, etc. Anything I do 'plan' I

have to make sure that my absence from the event would not impact the quality

of

the event, since I never know if I will be able to keep the appointment. I

have to cancel and reschedule nearly half of my doctor's appointment because I

simply cannot get out of bed, bathe, get dressed, get out of the house, get

in the car, drive to the appointment, park the car, walk inside the office,

sit in the waiting room forever, go through the appointment, walk outside to

the car, drive home, walk from the car to the house, get inside, change back

into my PJs, and get in bed. I am exhausted thinking about how much effort all

of that took. My goodness.

I know that sounds sad, ridiculous, and over exaggerated. But the sad

reality is that this is the truth. I learn to live with it, one day at a time,

life everyone else. It all seems like such a horrendous disease and how can one

adapt to such a catastrophic event in your life. But we do. Some how, some

way, we rise to the occasion. And, amazingly, with all that we have lost, most

of us are able to go to be still feeling grateful for all that we do have.

Karyn , RN

Executive Director, PAI

[Guest guest]

,

I was with Friday when he had two phone interviews with the

Social Security people. This was to discuss his activities of daily

living. He spent nearly 3 1/2 hours answering questions and twice I

had to leave the room because just listening to him explain how he

was living brought tears to my eyes. He too cannot plan anything and

when he does something big - he ends up in bed for hours, sometimes

days if he really overdid it and it is just simple, ordinary things

that drain him over and over. He talks about the effort to get up and

go to the kitchen to make a sandwich, or how hard it is to gather the

items to use for his shower and now he only shaves once a week and

then nicks his face up because he shakes, etc.... My strong,

active, smart, wonderful son telling how he used to live his life

coaching football, cub scouts, Sunday School, campouts, hikes, bike

trips, snowmobiling, skiing, all these things he can't even

consider. He can't even make it through dinner and a show with his

wife. His 9-month-old kills him when he holds him because he likes

to jump on daddy and if he hits his gut it ravages him with pain. I

HATE IT SO MUCH!!!! Sorry - reading your post just sounded so much

like him and it is not fair. Bless you and bless him for being the

amazing people you are and finding small joys in this strange and

horrid disease you live with. How I pray for a cure, over and

over. Soon, I tell him, soon.... from Michigan

[Guest guest]

I can really relate! Yet the hardest thing for me is the waiting in

line or sitting waiting for my name to be called. I have a hard enough

time driving to an appointment. Lately doing laundry is a chore. I

take part of the clothes then come back for more and then the laundry

soap. I do everything in parts anymore.

I remember the days of mountain bike riding for 15 miles out in the

country for hours on end. It is so much different and how in a couple

of years so much has changed.

Walt

[Guest guest]

Heck, I can not even sit in front of the computer for any longer than

an hour at the most without not starting to hurt more?

Walt