Quality of Life

[Guest guest]

Hi all,

I was just reading Mark & Suzi's posts about trips and activities and

wanted to ask what quality of life you all have and what can be

expected?

Does this shorten life and make you house bound? Do you enjoy life and

continue to do things like take a cruise, workout etc?

Eileen

[Guest guest]

> Eileen, I used to ride my bike 10 miles each morning, go the gym and

do yoga at lunch. I don't do any of that now. I am very malnurished. I

started barfng about 10 x a day on average, every day. I think that's

more of the gastroparisis, either way, I do good just to get up each

day and go to work. -Kathleen

[Guest guest]

Oh Kathleen, that is terrible, I am so sorry. I can relate to your

activity levels before. Although this pancreas stuff has been recent

for me, I have Chronic fatigue and Fibromyalgia, and before that I

used to run, lift weights, hike, do so many things.

There is a film out called " I Remember Me " and although it is about

people with CFS, I am sure anyone with chronic illness can realte to

the mourning of what used to be.

Eileen

> > Eileen, I used to ride my bike 10 miles each morning, go the gym

and

> do yoga at lunch. I don't do any of that now. I am very malnurished.

I

> started barfng about 10 x a day on average, every day. I think

that's

> more of the gastroparisis, either way, I do good just to get up each

> day and go to work. -Kathleen

[Guest guest]

Eileen-

I do okay most days...some days I hurt so bad I can't work...other

days I can even take a short walk and clean up the house... My poor

husband never knows what kind of wife he is going to get when he walks

in the door from work. If I have a flare, I am down and out for

nearly a week, then I start back slowly again. I can go on vacation,

but I don't dare leave without all my meds, and injectible shots I can

give myself if needed. Nothing is worse to me that being THAT sick

far away from home.

I know you will get varied answers from people. Some people really

have it bad...and it breaks my heart to hear their stories and what

they go through. I hurt 24/7, but I also know that it could be so

much worse...and it is for others. I just try to live in the

moment...seizing the good days for all their worth.

Hugs,

Suzi B.

Colorado

[Guest guest]

Eileen wrote:

> Does this shorten life and make you house bound? Do you enjoy life

and continue to do things like take a cruise, workout etc?

Eileen,

All of us will die, few of us will die from CP. It will be heart

attacks, car accidents or some of the same things that kill other

people that will kill us. Those that are more endangered are those

who are alcoholic CP patients and refuse to stop drinking alcohol.

The risk rates for early death for that group is the highest, and

their demise is often very painful, with complete organ failure and

many complex medical issues.

Some patients with CP are housebound a good percentage of the time,

others only when in the midst of an attack or really bad episodes of

pain. A high percentage do eventually have to apply for SSDI

disability, because work habits are continuously interrupted by

hospitalizations, surgeries or frequent days of debilitizing pain

that doesn't adhere to an employer's time clock. Many others are

able to work, either full or part time, and continue to do so as

long as they can.

Physical activity does become limited to some extent - you won't

find many of that continue to play tennis, hockey, football or

physically demanding sports. Personally, I still swim, kayak, hike,

(slowly), bike, walk and garden, but my doctor prohibits me from the

snow skiing, water skiing and volleyball that I used to enjoy.

Travel is still possible, IF you feel up to it and are having a run

of good days. I just returned from our 4th trip for a week on the

beaches of Belize, C.A., where we snorkeled, swam, biked and fished.

Would of parasailed, too, if the boat hadn't been broken.....lol!

Conversely, on our first trip to Belize two years ago, we had to

return on a medical air evac on the third day of the trip because I

had an acute attack on the flight going down. Travel is always an

" iffy " proposition, and getting traveler's insurance is highly

recommended, because you can never predict when an acute attack may

strike. For that reason, many people are afraid to make any plans

or take any trips, but I'm not one of them. I try, whenever

possible, NOT to let my CP and diabetes control my life, instead,

I try to control them.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

www.pancassociation.org/anthology#Heidi.html

Bluffton, SC

SC State & SE Regional Representative

Pancreatitis Association, International

Note: All comments or advice are based on personal experiences or

opinion only, and should not be substituted for professional medical

consultation.

[Guest guest]

Kathleen, I saw your post. I too have the gastroporesis cystic fibrosis,

insulin resistance, constant nausea, would like to vomit but can't. How

do you treat your gastoporesis? It seems like the food is up in my mouth

all the time. Motility is big problem for me. I have candida

everywhere. I am scheduled for another endoscopy on the 30th. How do

you stay hydrated when you vomit that much? Take care and a pain free

day to you. Deb

[Guest guest]

>Deb, I have NO idea how I stay hydrated quite frankly or why I am not

dead from malnutrition. I drink water constantly. I keep a case of

water in my car too. I take erythomycin for my gastroparisis. Although

now I have been taking it for so long, it's not working. I have heard

mixed results from pacemakers, though, I would be willing to try it.

Take care-Kathleen

[Guest guest]

I'm sure the hydration of the water is helping. do you have blood sugar

problems. I am only insulin resistant, not diabetic yet. I just have an

awful time with sugar in sugar candies. Last night my sugar was 176

about 11 P.M. It keeps me up at night time. Do you get a lot of the

bloating and indigestion. The bloating for me is the worse. I just

don't want to eat. Please let me know how you are doing. Take care and

a pain free day. Deb

[Guest guest]

> Debs, No, I don't eat candy. I don't even like sweets, good think. I

am diabetic. I should be on Lantus right now...long story I am not

going into...My sugars a hay wire. The Vietnam POWS lived in 1 cup of

rice a day for years. I think as Americans we are so used to eating

more then we should, as a rule. I also think my body is in starvation

mode, so it hords away what I do eat. I can't digest it anyway. I think

that is why I am not skin and bones. I don't drain-Kathleen

[Guest guest]

I was skin and bones but am gaining a little now. I used to eat

extremely healthy, I never knew what sugar was and I have to get back to

that. I agree we eat way to much. Take care. Deb