Re: (unknown)

[Guest guest]

Dagny,

Glad your RP. has quieted down for you.

Hope they can help the baby, and find out what the problem is.

Hugs,

Sandy

> Hi Everyone: I have been so busy I have not been able

> to keep up lately so will just go from here. I'm trying

> to get ready to go to San Diego to visit my son for a

> few days and then when I come back I'm going to England

> to help my daughter. She has a four month old baby who

> is having a lot of trouble with reflux to the extent

> that she is choking a lot. They're running a lot of

> tests to try to figure out what the problem is and my

> poor daughter is getting pretty tired. Fortunately, my

> RP has really gone into a quiet phase. It really hit my

> jaw (left temperomandibular joint) a year ago and for a

> long time my teeth wouldn't fit together and I could

> hardly open my mouth enough to eat a sandwich. It has

> very gradually improved and I'm in pretty good shape now

> and I sure hope it lasts. My jaw was clicking and

> grinding so bad until just recently that there were a

> lot of foods I just didn't want to tackle eating. I

> think the thought of they're putting me on metho scared

> me into getting better! Whatever---I'm really glad for

> the relief. I'm taking 4 mg pred now and VIOXX

> everyday. I'm afraid to try changing any of that. I

> check in whenever I can and love hearing how everyone is

> doing. I hope and pray that we will all improve. Love,

> Dagny

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

[Guest guest]

Dagney

You take care! Holler if you need anything!Please!!!

It sounds like you are going to be busy for awhile and

that is just what you need. Sending good thoughts and

prayers your way! Will miss you!

Lots of Love

Glenda

__________________________________________________

[Guest guest]

Gosh it is so good to hear from you girl. I am praying for you that

all that prednison will do the trick for you. Wishing you the best.

Please let us know how it is doing. Love you.

Heidi

> HELLO EVERYONE

>

> I WANTED TO GIVE AN UPDATE ON HOW I AM DOING. I HAD SAID THAT I

> PROBABLY WOULD BE FLYING TO SAN DIEGO FOR ANOTHER STENT SURGERY.

> WELL MY PULMONARY DOC, GOT THE RESULTS BACK FROM MY CAT SCAN. HE

> SAID THAT MY STENT HAS DROP, BUT ONLY BY MILLIMETERS. THAT WOULD NOT

> BE ENOUGH MOVEMENT TO CAUSE ANY BLOCKAGE. MY LOWERE LOBE IN MY LEFT

> LUNG HAS INFLAMMATION AROUND IT. IT'S CAUSING OXYGEN NOT TO FLOW

> PROPERLY. SO BEGINNING LAST SATURDAY HERE IS WHAT I HAD HAD TO DO,

> 80 MGS OF PRED. FOR 2WEEKS

> 60 MGS FOR 1 WEEK

> 40MGS FOR 2 WEEKS

> THEN DOWN FROM THERE. MY SUGAR HAS BEEN SO OFF THE WALL. I HAVE

> BEEN REALLY WATCHING IT LATELY. BUT I DO FEEL SO MUCH BETTER. MY

> MOOD SWINGS AREN'T AS BAD AS I THOUGHT THEY WOULD BE. MY DOCTOR DOES

> WANT ME TO GO OUT TO SAN DIEGO, BUT HE WANTS TO DO ANOTHER CAT SCAN

> BEFORE HE DOES ANYTHING ELSE. ALL IS WELL HERE, I WISH IT WAS

> BETTER, BUT I AM ALIVE AND FUNCTIONING NORMAL. DON'T WORRY ABOUT ME

> I'LL BE JUST FINE.

>

> LOVE

> VERONICA

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

[Guest guest]

Hi ,

I worry about you when I don't hear from you so thanks for the update.

Do the docs know what is causing the inflammation in your lung? Please let

me know what happens.

Love Ya,

Sandy

----- Original Message -----

> HELLO EVERYONE

>

> I WANTED TO GIVE AN UPDATE ON HOW I AM DOING. I HAD SAID THAT I

> PROBABLY WOULD BE FLYING TO SAN DIEGO FOR ANOTHER STENT SURGERY.

> WELL MY PULMONARY DOC, GOT THE RESULTS BACK FROM MY CAT SCAN. HE

> SAID THAT MY STENT HAS DROP, BUT ONLY BY MILLIMETERS. THAT WOULD NOT

> BE ENOUGH MOVEMENT TO CAUSE ANY BLOCKAGE. MY LOWERE LOBE IN MY LEFT

> LUNG HAS INFLAMMATION AROUND IT. IT'S CAUSING OXYGEN NOT TO FLOW

> PROPERLY. SO BEGINNING LAST SATURDAY HERE IS WHAT I HAD HAD TO DO,

> 80 MGS OF PRED. FOR 2WEEKS

> 60 MGS FOR 1 WEEK

> 40MGS FOR 2 WEEKS

> THEN DOWN FROM THERE. MY SUGAR HAS BEEN SO OFF THE WALL. I HAVE

> BEEN REALLY WATCHING IT LATELY. BUT I DO FEEL SO MUCH BETTER. MY

> MOOD SWINGS AREN'T AS BAD AS I THOUGHT THEY WOULD BE. MY DOCTOR DOES

> WANT ME TO GO OUT TO SAN DIEGO, BUT HE WANTS TO DO ANOTHER CAT SCAN

> BEFORE HE DOES ANYTHING ELSE. ALL IS WELL HERE, I WISH IT WAS

> BETTER, BUT I AM ALIVE AND FUNCTIONING NORMAL. DON'T WORRY ABOUT ME

> I'LL BE JUST FINE.

>

> LOVE

> VERONICA

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

[Guest guest]

, Sorry to hear of the problems that you are having, but really glad

to hear from you. Yes we can worry about you!! You know we all do when we

don't hear from you in a while. Please take care and keep us all updated.

Hugs

[Guest guest]

Beano which is

available in Rite Aid. I think it helps, but I'm not

going to ask anyone!! Lol.

Liz you are so crazzzzzzzy! Gee that made laugh so hard. I'm sitting here hoping nothing happens. (LOL)

I will try the Beano. Perhaps I need to talk to my PCP about this. I'm still laughing as I type.

Love and thanks rene

[Guest guest]

I'm sorry but I don't know your name. Your story sounds pretty familiar

though, not that it will help you much.

I was diagnosed with CP a couple months ago, even though this was my

fourth attack over the course of twelve years. I've been through five

doctors trying to figure out what was wrong with me, but have had pretty poor

luck. Seems like the doctors that I've dealt with have not been terribly

bright either. But, like Kimber said, it's tough to diagnose and

unfortunately, it seems to be the last thing they look for... I don't know

why in the hell that is, but then I guess I'm more than a little biased.

My first attack was twelve years ago, and I've been having pain regularly

since then... and of course it's gotten progressively worse until just

recently I have had to start taking pain medication every day - all day - and

even with the help of narcotics, I am still unable to sleep, until I

literally just end up falling down wherever I am... which happened to me

today at a friend's house, which was really embarrassing.

I was helping move furniture when I sat on the sofa when folks were

taking a break... woke up ninety minutes later, and the room was empty,

except for the sofa and me. Everyone was gone.

Of course it's funny now, but I was pretty disgusted at the time...

disgusted with myself, this disease, my sleeplessness that even heavy sleep

aids don't help, the pain that makes me take narcotics, the constant back,

stomach and bowel problems, and nobody really understands - about the

sleeping problem or anything else, of course - except for the folks on this

list. At least most folks can relate to most of the things I've been

through, and if they've not been through it themselves, they tend to at least

be sympathetic and supportive. That, or they make fun of me. (Haha...

Okay... that part was a joke.)

My family all knows that I have diabetes, chronic pancreatitis as well as

acute hemorrhagic pancreatitis. They don't understand it, so we don't ever

talk about it.

So I've never seen a point in making them aware that I also suffered from

chronic cystitis of the gall bladder for several years before I finally had

my gall bladder removed - had hiatal hernia repair, or suffered from

esophageal hemorrhaging, esophageal verices, high blood pressure, chronic

depression, OCD, PTSD, chronic anxiety disorder, agrophobia, agoraphobia,

panic attacks...

They just know that I'm sick again, just like I've been regularly over

the past several years... they assume that I'll have surgery of some kind, or

take the right kind of medication to get better. How do you tell your mother

that you will probably die long before she will, when you're the baby of the

family, and her favorite... or even when you're NOT either of those things?

I don't know. Maybe somebody can tell me.

They know there are lots of medicine bottles in my kitchen cabinet, but

they have not idea how many there really are. They don't know that each day,

several times a day in most cases, I take Verapamil, Oxazapam, Norvasc,

Catapres patch, Fentanyl patch, Nadalol, Efffexor, Triazolam, Pancrease,

Questran, Neurontin, Lorazapam, Prevacid, Famotadine, Oxycontin, and two

kinds of insulin.

They still assume that I'm the healthy, muscular, indestructible jock

that I've always been. (Now I just wear baggy clothes a lot. I'd be in big

trouble without oversized sweatshirts.)

So obviously as you can see I too feel sorry for myself a lot, and get

really overwhelmed much of the time, and often say to myself " What's the

use? " . But what's the alternative? As I see it, I don't HAVE any

alternatives... so I figure I need to just get off my pity pot and get my ass

busy livin'. In " Shawshank Redemption " one of the two main characters told

the other that " Either you get busy livin', or you get busy dyin'. " I guess

since a part of me is already busy dying, a larger part of me has to stay

busy living... and since I don't have much control over my pancreas and the

rest of my guts (other than taking the meds they tell me to, diet, etc; it's

still going to do what it will), I try to focus on the part of me that I DO

have some control over... My emotions, thoughts, feelings and my REACTION to

this disease and how I decide to live with it or not.

Well, like I said... Many, many days I don't have the energy to do much

about it. Thankfully, some days I DO have the energy and the wherewithal to

get off my ass and take some action. Go to support or 12-step meetings,

prayer meetings, work, exercise / work out, spend time with my cats, spend

time with my partner, my grandmother, my family; paint, shop, walk in the

park, go to exhibits and shows, theater, galleries, plant trees, shrubs,

flowers, mow, weed or trim, work on the outside of the house, clean on the

inside, cook, watch some educational TV, hit the library, spend time surfing

and catching up with e-mail, spend time at the Plaza, research this disease

and spend time on the phone working with the insurance company and the

doctor's office trying to figure out what is in front of me that I can do to

try to get better... and if Western medicine says that there's nothing

immediately before me, then I can get creative and find out what Eastern

philosophies suggest that I might do, many of them also very helpful!

Meditation, prayer, acupuncture, sand sculpture, work with crystals, etc...

Both lists are endless of course, depending on what one's interests and

beliefs are, and being a little bit creative helps, but primarily

determination and the desire to no longer spend my days sitting in my own

crap are the chief motivators.

It's hard, it's really, really hard. Anybody who says otherwise is

grossly in denial or just flat-out lying to you. I regularly think that I

may well be very close to becoming insane, and even think that perhaps it

might be welcomed sometimes... I'd have a good reason to yell and scream and

fight and kick until I got my own little private padded room with lots of

thorazine, or to just give up and lie in bed and not respond to anybody and

not eat and make them hook me up to a morphine drip... but of course I know

that also comes with " the tube " , the loneliness, the painfully dreary

roommates, the pity from family and friends, the looks and headshakes from

the nurses and doctors and even the orderlies, etc.; and eventually they kick

you out too and you're right back here - only further in the hole financially

and otherwise, still sick, still blue, etc., but maybe on a few more

medications... so that doesn't seem like a terribly good choice.

Looks like my best choice is to plug ahead, try to improve the

antidepressants that I'm on until I get a combination that works, get regular

exercise and work on giving my body something close to proper nutrition...

that list is much smaller than the one above when I look at it, so maybe it's

a better choice.

Good luck to you... The folks here are very helpful, very knowledgeable

and very sympathetic. Ask for help and you'll probably get it. Push your

doctors to get the help you need instead of feeling like a " victim " ; I think

that helps a lot, to feel like you're taking charge of your life, your body

and your disease. And that's about the best we can do... with one foot in

front of the other.

God bless.

Terry in KC

<< how do you deal with all the mental anguish and

depression that comes from being sick all the time

(insulun dependent diabetic - 10 yrs and resent

chronic pancreatitis among other minor things) i swear

i'm going compleatly crazy lately i dont know how much

more of this i can take...works driving me crazy...got

no support at home, i swear they think its all in my

head...all the waiting for appointments with so many

idiot specialist (took them 8 months to figure out

whats wrong with me and i'm still going for more

tests)...all the pain...all the pills and needles i

gave to take...insanity is setting in ;o( >>

[Guest guest]

Rose,

the doctors have me on an anti depressant and it works really well on

dealing with the depression.

I'm used to the pills/needles, etc as I've been insulin dependent for 20

years (since I was 10).

It's hard not having support at home, I'm lucky enough to have wonderful

support from my mother and my brother

(no significant other).

This disease is one of the hardest to diagnose because the symptoms are

frequently seen in many other gi disorders.

This group also helps in dealing with the disease. I know that here, I

can find people who understand completely what I'm going through, all

the problems it causes in all other aspects of my life. I also have a

very supportive work group, but that might be because all of them are

former nurses and so have some idea of what I'm going through. When I

need a day off, they let me take it and don't give me any problems

because of it. I've also multiple physical problems as I also have a

genetic blood clotting disorder that caused a heart attack and bypass

surgery at age 29. So, I'm taking lots of pills and needles are

something I will never see the end of being diabetic. All I can say is

try and get on an antidepressant if it is really hard to deal with it

makes a big difference.

kimber

--

Kimber

hominid2@...

California State Chapter Representative

Pancreatitis Association, International

[Guest guest]

i am on oxazepam and venlafaxine but i'm still having

a hard time of it...maybe its just the lack of support

--- Kimber wrote:

> Rose,

> the doctors have me on an anti depressant and it

> works really well on

> dealing with the depression.

> I'm used to the pills/needles, etc as I've been

> insulin dependent for 20

> years (since I was 10).

> It's hard not having support at home, I'm lucky

> enough to have wonderful

> support from my mother and my brother

> (no significant other).

>

> This disease is one of the hardest to diagnose

> because the symptoms are

> frequently seen in many other gi disorders.

> This group also helps in dealing with the disease. I

> know that here, I

> can find people who understand completely what I'm

> going through, all

> the problems it causes in all other aspects of my

> life. I also have a

> very supportive work group, but that might be

> because all of them are

> former nurses and so have some idea of what I'm

> going through. When I

> need a day off, they let me take it and don't give

> me any problems

> because of it. I've also multiple physical problems

> as I also have a

> genetic blood clotting disorder that caused a heart

> attack and bypass

> surgery at age 29. So, I'm taking lots of pills and

> needles are

> something I will never see the end of being

> diabetic. All I can say is

> try and get on an antidepressant if it is really

> hard to deal with it

> makes a big difference.

> kimber

>

> --

> Kimber

>

> hominid2@...

>

> California State Chapter Representative

>

> Pancreatitis Association, International

>

>

>

__________________________________________________

[Guest guest]

In a message dated 9/28/01 10:00:35 AM Eastern Daylight Time,

toosweettocare@... writes:

> ginger root is good for when you nausous...is there

> anything else you would recomend me getting for my

> illnesses...i'm willing ta try anything at this point

>

Hi toosweet,

I would suggest a stop at the grocery store first, they have many things I

find very good at generally lower prices than the health food store, and then

finish up at the health food store.

Grocery store items might include ginger root, complex carbohydrates in

variety like the standby's like rice (many different kinds but some high

priced, also try an ethnic supermarket if you can find one, I like jasmine

rice and basiminjy (sp)) oats, barley, finely ground corn, pasta. Soy and

tofu products. Garlic, carrots and beans.

Health food store items might include a good multi-vitimine, quoina, herbal

teas you might enjoy, and some are very good and knowledgeable in

recommending things if you have the confidence to dialog with them about your

symptoms and health problems.

Don't forget to pick up a one liter plastic bottle of something you can

drink, then reuse the bottle to consume your daily water (I get mine from the

tap), but if you have one bottle in the morning and another one in the

afternoon and evening, you got a nice easy way to assure your 64 ounces daily

of water. And any more consumption of any fluids is just a bonus.

Good shopping, Poncho

[Guest guest]

tanx's...i only have one problem...i HATE water

LOL...i know...i know...i have ta drink it

--- poncho9191@... wrote:

> In a message dated 9/28/01 10:00:35 AM Eastern

> Daylight Time,

> toosweettocare@... writes:

>

>

> > ginger root is good for when you nausous...is

> there

> > anything else you would recomend me getting for my

> > illnesses...i'm willing ta try anything at this

> point

> >

>

> Hi toosweet,

> I would suggest a stop at the grocery store first,

> they have many things I

> find very good at generally lower prices than the

> health food store, and then

> finish up at the health food store.

> Grocery store items might include ginger root,

> complex carbohydrates in

> variety like the standby's like rice (many different

> kinds but some high

> priced, also try an ethnic supermarket if you can

> find one, I like jasmine

> rice and basiminjy (sp)) oats, barley, finely ground

> corn, pasta. Soy and

> tofu products. Garlic, carrots and beans.

> Health food store items might include a good

> multi-vitimine, quoina, herbal

> teas you might enjoy, and some are very good and

> knowledgeable in

> recommending things if you have the confidence to

> dialog with them about your

> symptoms and health problems.

> Don't forget to pick up a one liter plastic bottle

> of something you can

> drink, then reuse the bottle to consume your daily

> water (I get mine from the

> tap), but if you have one bottle in the morning and

> another one in the

> afternoon and evening, you got a nice easy way to

> assure your 64 ounces daily

> of water. And any more consumption of any fluids is

> just a bonus.

> Good shopping, Poncho

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

There are many other things to try. Below are just a couple. I hope this finds

you an yours well.

Physical Therapy

I have found out some information from my physical therapist. Go to

http://www.iahp.com/ and then click on Locate Practitioners then click on your

state. The letters after the persons name you are looking for is VMI, VMIA,

VMIB, VMR, VLT, PIVM, MFR. The more letters they have after their name the

higher levels of therapy they provide. I have found that physical therapy helps

me quite a bit. I hope everyone will take the time and check out one of these

therapist close to you.

I hope this finds you and yours well

Mark E. Armstrong

Antioxidants

Dear Mark,

Thank you for your e-mail. May I first introduce myself, my name is Stirling and

I work as a volunteer for the Pancreatitis Support Group. I am their " cyber

man " , I handle all the letters that we receive over the net. Our main aim is to

spread the word about the treatment that is available to sufferers of acute and

chronic pancreatitis. The treatment was pioneered at the Manchester Royal

Infirmary by DR Braganza in the mid 90's. It involves the use of ANTIOXIDANTS, I

have been on it for a number of years now, it is not a cure, but it does give me

pain relief. If I can be of any help any of the visitors to your site, I can be

e-mailed on ppsg@... or stirling.moore@....

Best Wishes and Good Health Stirling for the Pancreatitis Support Group

Mark E. Armstrong

www.top5plus5.com

(unknown)

> question of the day...i'm diabetic and have chronic

> panceatitis...i'm gonna go ta the health food store

> this weekend, because i heard a lot of you saying

> ginger root is good for when you nausous...is there

> anything else you would recomend me getting for my

> illnesses...i'm willing ta try anything at this point

>

> __________________________________________________

>

[Guest guest]

We have all experienced, and openly talked about on this list, the

persons in our lives who just simply can NOT understand how we feel or what

we go through. But there is a simple step that we can take, and Kimber has

graciously delivered it to us.

Once forced (if necessary!) to read about a dozen pages about CP, it's

effects, it's prognosis, etc., there is no faster way in the world to make

somebody who was previously been an ass, look at you with sympathy and a

whole new level of understanding - just as soon as they put the pages down.

I've tried it twice, and it's worked twice.

Of course, I've saved the files for future reference, should I need it,

and I imagine I probably will.

Thanks Kimber!

Peace,

T n KC

<< Have you tried sitting down and talking to both your son and your

brother and

asking them to do these things since you are sick and working tires you

out more than

a healthy person. You have a right to ask for and expect the help from

them.

If you really want to, do some searches on the internet on chronic

pancreatitis and make them

read them, that should give them a nice lovely clue to how you are

doing. One of the side effects

of the disease is fatigue due to pain, poor nutrition and sometimes

sleep loss.

Kimber >>

[Guest guest]

The best Vitamin C product that I've come across is by a company called

Alacer.

They have two types, 1 in pill form and one in powder form.

The pill form is called SuperGram III and the powder is Emergen-C.

Check out their website: http://www.alacer.com/

You can even order online and they'll deliver it to your door.

Kimber

--

Kimber

hominid2@...

California State Chapter Representative

Pancreatitis Association, International

[Guest guest]

i've tryed...will give it one more shot after i have

my mri and get the final results on how bad it is from

my gi specilist...they are just very unemotional,

uncaring people...that was always there nature...i'm

expected ta take care of everyone...thanks for the

sugestion

--- Kimber wrote:

> Have you tried sitting down and talking to both your

> son and your

> brother and

> asking them to do these things since you are sick

> and working tires you

> out more than

> a healthy person. You have a right to ask for and

> expect the help from

> them.

> If you really want to, do some searches on the

> internet on chronic

> pancreatitis and make them

> read them, that should give them a nice lovely clue

> to how you are

> doing. One of the side effects

> of the disease is fatigue due to pain, poor

> nutrition and sometimes

> sleep loss.

> Kimber

>

> --

> Kimber

>

> hominid2@...

>

> California State Chapter Representative

>

> Pancreatitis Association, International

>

>

>

__________________________________________________

[Guest guest]

Dear toosweeettocare,

If your brother and your son are so uncaring and selfish and unkind that

you simply can't get through to them, and if after printing out literature

for them to read and finding that it does not have any impact on them, I do

have one more suggestion. May work, may not, but you might give it some

thought over the next few days while you're waiting on the info that you're

waiting on from your docs.

It will be extremely difficult for you - a fully qualified, lifelong

" caretaker " ... and it will require great patience on your part, and a great

deal of " stick-to-itiveness " ... but I've heard tell that it works.

When they leave dirty dishes in the sink, you leave them alone too.

When they refuse to cook any dinner after you've had a long day, then

refuse to cook dinner too. Make something to eat for yourself.

When they leave their dirty laundry around the house and don't help you

catch up on laundry, then LEAVE their dirty laundry laying around the house,

and just wash your own things.

When they refuse to shop for groceries, then don't shop for THEM. Pick

up the things that you will require for your " new diet " , which will have

little appeal to either of them, I promise... and cook dinner for yourself

with all the things that you've shopped for. Don't make enough for three.

Make enough for one. YOU. Also, only shop for the beverages that you will

drink... bottled water (if you drink bottled water), whatever particular

juices you find work for you, high-protein shakes, etc... No Coke or Mountain

Dew or Pepsi, or Beer, or whatever they drink... they are old enough to pick

it up for themselves.

When it's time to change bed linens, there is only one bed that you sleep

in, right? Change the linens on YOUR bed. If you don't share a bath with

them, then just clean your own bath - leave theirs alone.

Are you getting the pattern? If nothing else works, and it sounds like

nothing else has, then give it a shot... You'll probably have to work very

hard to leave the mess around, or not shop for them, or not change their

beds... But you've got to do it for YOU. You are the one here who is sick

and in need of help. If they refuse to help but instead get angry or hostile

about it, then tell them that they are old enough to live on their own, and

that they are quite welcome to give it a shot any time now. Like RIGHT now.

It's up to you. Do you want to be a victim? Nobody else can fix the

situation for you but YOU.

Good luck,

Terry in KC

<< i've tryed...will give it one more shot after i have

my mri and get the final results on how bad it is from

my gi specilist...they are just very unemotional,

uncaring people...that was always there nature...i'm

expected ta take care of everyone...thanks for the

sugestion

--- Kimber wrote:

> Have you tried sitting down and talking to both your

> son and your

> brother and

> asking them to do these things since you are sick

> and working tires you

> out more than

> a healthy person. You have a right to ask for and

> expect the help from

> them.

> If you really want to, do some searches on the

> internet on chronic

> pancreatitis and make them

> read them, that should give them a nice lovely clue

> to how you are

> doing. One of the side effects

> of the disease is fatigue due to pain, poor

> nutrition and sometimes

> sleep loss.

> Kimber >>

[Guest guest]

Dear Rosie,

Since I'm on a Mac, the documents that I created are in QuarkXpress,

which IS available for PC, but most folks don't have it because of the

cost... Do you have it by any chance If not, I can collect all the text in

the document and export or save it as a text file, which you should be able

to easily drop into Word or a similar word processing application.

If you want the text, I'll be MORE than happy to send a text file to

you... Just give me the word and I'll start working on it.

Peace R,

Terry in KC

PS... A job well done for turning in your supervisor for being such an

insensitive shit. I hope they put his you-know-what in the wringer. Sounds

sorta' like they did! Hahaha... I'd call it one of those " victories " that I

was talking to Crystal about...

<< thanks...you wouldn't happen to have those files on

your computer that you could e-mail?...but it also

depends on the person...i printed out one and gave it

to my suppervisor, just to let him know whats going on

with me and why i have missed so much work...his

response was " so your going to gain weight " *giggle*

(if it gets fixed)...you don't say that to a woman no

matter what the situation LOL...when i got through

with him, he got a harsh repremand (1 our talking to

by human resources, plus a letter in his file) and i

got a couple dozen appologies...and a hell of a lot of

freedom at work hehehehe...you don't mess with a

person who is so sick of being sick

Rose

--- roguekc@... wrote:

> We have all experienced, and openly talked about

> on this list, the

> persons in our lives who just simply can NOT

> understand how we feel or what

> we go through. But there is a simple step that we

> can take, and Kimber has

> graciously delivered it to us.

> Once forced (if necessary!) to read about a

> dozen pages about CP, it's

> effects, it's prognosis, etc., there is no faster

> way in the world to make

> somebody who was previously been an ass, look at you

> with sympathy and a

> whole new level of understanding - just as soon as

> they put the pages down.

> I've tried it twice, and it's worked twice.

> Of course, I've saved the files for future

> reference, should I need it,

> and I imagine I probably will.

> Thanks Kimber!

>

> Peace,

> T n KC >>

[Guest guest]

thanks...you wouldn't happen to have those files on

your computer that you could e-mail?...but it also

depends on the person...i printed out one and gave it

to my suppervisor, just to let him know whats going on

with me and why i have missed so much work...his

response was " so your going to gain weight " *giggle*

(if it gets fixed)...you don't say that to a woman no

matter what the situation LOL...when i got through

with him, he got a harsh repremand (1 our talking to

by human resources, plus a letter in his file) and i

got a couple dozen appologies...and a hell of a lot of

freedom at work hehehehe...you don't mess with a

person who is so sick of being sick

Rose

--- roguekc@... wrote:

> We have all experienced, and openly talked about

> on this list, the

> persons in our lives who just simply can NOT

> understand how we feel or what

> we go through. But there is a simple step that we

> can take, and Kimber has

> graciously delivered it to us.

> Once forced (if necessary!) to read about a

> dozen pages about CP, it's

> effects, it's prognosis, etc., there is no faster

> way in the world to make

> somebody who was previously been an ass, look at you

> with sympathy and a

> whole new level of understanding - just as soon as

> they put the pages down.

> I've tried it twice, and it's worked twice.

> Of course, I've saved the files for future

> reference, should I need it,

> and I imagine I probably will.

> Thanks Kimber!

>

> Peace,

> T n KC

>

>

> << Have you tried sitting down and talking to both

> your son and your

> brother and

> asking them to do these things since you are sick

> and working tires you

> out more than

> a healthy person. You have a right to ask for and

> expect the help from

> them.

> If you really want to, do some searches on the

> internet on chronic

> pancreatitis and make them

> read them, that should give them a nice lovely clue

> to how you are

> doing. One of the side effects

> of the disease is fatigue due to pain, poor

> nutrition and sometimes

> sleep loss.

> Kimber >>

>

>

__________________________________________________

[Guest guest]

the quark i have is only 4.0

--- roguekc@... wrote:

> Dear Rosie,

> Since I'm on a Mac, the documents that I created

> are in QuarkXpress,

> which IS available for PC, but most folks don't have

> it because of the

> cost... Do you have it by any chance If not, I can

> collect all the text in

> the document and export or save it as a text file,

> which you should be able

> to easily drop into Word or a similar word

> processing application.

> If you want the text, I'll be MORE than happy to

> send a text file to

> you... Just give me the word and I'll start working

> on it.

> Peace R,

> Terry in KC

> PS... A job well done for turning in your

> supervisor for being such an

> insensitive shit. I hope they put his you-know-what

> in the wringer. Sounds

> sorta' like they did! Hahaha... I'd call it one of

> those " victories " that I

> was talking to Crystal about...

>

>

> << thanks...you wouldn't happen to have those files

> on

> your computer that you could e-mail?...but it also

> depends on the person...i printed out one and gave

> it

> to my suppervisor, just to let him know whats going

> on

> with me and why i have missed so much work...his

> response was " so your going to gain weight " *giggle*

> (if it gets fixed)...you don't say that to a woman

> no

> matter what the situation LOL...when i got through

> with him, he got a harsh repremand (1 our talking to

> by human resources, plus a letter in his file) and i

> got a couple dozen appologies...and a hell of a lot

> of

> freedom at work hehehehe...you don't mess with a

> person who is so sick of being sick

>

> Rose

> --- roguekc@... wrote:

> > We have all experienced, and openly talked

> about

> > on this list, the

> > persons in our lives who just simply can NOT

> > understand how we feel or what

> > we go through. But there is a simple step that we

> > can take, and Kimber has

> > graciously delivered it to us.

> > Once forced (if necessary!) to read about a

> > dozen pages about CP, it's

> > effects, it's prognosis, etc., there is no faster

> > way in the world to make

> > somebody who was previously been an ass, look at

> you

> > with sympathy and a

> > whole new level of understanding - just as soon as

> > they put the pages down.

> > I've tried it twice, and it's worked twice.

> > Of course, I've saved the files for future

> > reference, should I need it,

> > and I imagine I probably will.

> > Thanks Kimber!

> >

> > Peace,

> > T n KC >>

>

>

__________________________________________________

[Guest guest]

Dear Rose:

This is not a good time in your life to be taking everything personally,

or you're gonna' end up hurt... a lot!! A few posts ago (of bingo fame)

was writing about her GI that wouldn't book her for ten more weeks, and this

was directly after being discharged from the hospital after a serious bout of

CP... Seriously not very nice treatment from a GI, or any doctor, and if

she'd taken that personally, she'd be having even a tougher time of it now.

Hell, she'd be passed out on a barstool somewhere. (<g> Just kidding,

... don't go gettin' any wise ideas.)

Sorry to make a comparison, my point is just that sometimes a situation

is not specifically aimed AT us, or intended to hurt us, sometimes it just IS

what it is, and it's not intended by anybody to be cruel or unkind or

uncaring.

Sometimes, folks don't always answer their mail right away, or don't

answer in as timely a fashion as we'd like.

I know that I personally do not answer all of the mail that I'd like to.

There just are not enough hours in the day!! In fact, I've been raged at for

answering TOO many mails, so who am I to please?? It's tough. Hell, I wrote

like... SEVEN e-mails to this list today! So if you hear a story about a guy

in Kansas City contracting Anthrax... Haha... Okay, I deleted what I

previously wrote there. Can't we all just get along?

Also Rose, too often I put off answering some mail until the next day, or

later, for various reasons... I run out of time, I think I'll get to it later

in the day and my machine crashes or I crash myself, or any number of other

things. And if I took it personally every time that some folks on the list

didn't answer me, or all the times that NOBODY answered me, I'd be a SERIOUS

mess! Ha!! I get ignored all the damn time! Haha... Thankfully, I learned

a long, long time ago that in order to survive online, one has to develop

some pretty thick skin VERY early on. Actually, I've been on line for about

ten years now (VERY early subscriber, as an early web developer) and I do be

lieve that had to be online lesson#.... Hmmmm... Let's see... Oh... Lesson

number... uhhh... ONE??! Yeah, that's about what I'm thinking. Lesson

number 1.

DON'T TAKE ANYTHING PERSONALLY. I believe it should be the built-in

screen saver that comes with each and every computer.

Besides, as I remember... You were talking about what might have been...

Hmm... *GIRL* stuff. (Eek! There, I said it!) So most of us guys just

KNOW to leave THAT the hell alone. Just AIN'T NO RIGHT ANSWER.

( " Honey, does this dress make me look fat? Uhhh, no dear, you look

practically skinny. Skinny! Now I look anorexic to you? You S.O.B.! No!

Not anorexic, not even skinny... just... Well, not too thin, not too

thick... THICK!?? Now you're calling me a thick-ass HEIFER!!?? WHY, YOU...

I'LL KILL YOU, YOU MO...!! " )

Well... that one alone cut the response rate down 50%, Rose! :-)

Rose, if nobody cared, I'd never have taken the time to edit down or

collect a couple zip files worth of related graphics to send that " info book "

to you, (as limited as it was - sorry). And I'm guessing that lots of folks

on this list have done and said things lots nicer and more thoughtful things

than that, in fact I'm sure of it. We care about you. People care about

you. People HERE care about you, and don't like seeing you hurt. Sometimes

folks are good at showing it, sometimes we're not. Just like in the rest of

life. Some days good, some days bad. Yen-Yang. Plus-Minus. Peanut

Butter-Jelly. Haha. Love that one. See? Saw ya' smile.

Besides, how many folks tried to help you by telling you to put that

useless-ass family of yours to work, or on the street? Haha... I'm guessing

they've had just about enough time by now to learn about CP. If they're

still draggin' you down, give them another chance to learn and help, or take

care of themselves, or get the heck out... That is if they're bringing you

down still, and it seems that they sure are.

I was going to bed over two hours ago, probably closer to three. NOW I

need to take a break. Rose, all things change. Absolutely nothing stays the

same... with just a little bit of effort, things change for the better, not

for the worse... but they change, regardless.

Tomorrow will be different... probably better. Hang in there. Do your

best to MAKE things better. PLEASE. 'Cause I ain't got ONE MORE PEP TALK in

me this weekend! DAMN! I'M BEAT!!

Tomorrow it's YOUR job to try to pic somebody ELSE's spirit up. Got it?

Good.

My fingers are sore, I'm tired of being peppy, and I have not ONE SINGLE

cheerful adjective left in my repertoire. Not to mention that I " care "

enough to sit and TYPE for the last damn hour. ENOUGH IS ENOUGH. Perhaps

I'll take a week or so off. Okay, at least the rest of the night.

Signing out,

Terry in KC

<< i had the most awful day docs and waiting rooms and

crying and waiting...i've been out for 12 hours and

alot lf it has been spent sobbing...now i have another

minor problem and an extreamly painful one...an

infection about the size of you fist and the doc

couldn't drain it cause it was too hard...tons more

pills and now 5 needles a day...it was just oh so

awfull...than i came home ta have a big fight with my

lazy lay on his ass all day and not even try to do a

thing...now its taken me an hour to type this post

cause i came down to the puter to find some strengh,

words of encourage ment, support after the painfull

post i did this morning...but nothing...i'm sorry i

invaded your space, but don't worry you won't see me

again...i thought this was a place to share...at first

it gave me so much hope, but i can't take anymore pain

in my life...bye >>

[Guest guest]

thanks...all went fine, but its gonna be at least a

weak to 10 days for the doc to get it, then i don't

know how long till i get in to see him

--- hhessgriffeth@... wrote:

> Dear Rose,

>

> Good luck with your MRI tomorrow. Don't know

> exactly how long

> it takes for results, depends on the size of the

> hospital and

> whether they have radiologists available to read the

> pics. I would

> think 3 business days would be adequate time.

>

> I know what you mean about wanting to know about it

> in a face to

> face session! Don't forget to ask for the records,

> too.

>

> Hope you get some news you can use.

>

> With hope and prayers,

> Heidi in SC

>

>

> > well tomorrow is the big day for the MRI......so

> hopefully this will

> get me some answers

> > (been a year since i got really sick)..

> >

> >

> __________________________________________________

> >

[Guest guest]

Rose - what you can't do is give up - please hang in there. TTFN,

(unknown)

> >

> >

> > > i am going total insane and i don't know what to

> > do

> > > about it...i have lost alot of wait...i'm hungry

> > all

> > > the time, but when i eat all i do is have to run

> > to

> > > the bathroom, its less than 7 feet away and i

> > still

> > > can't make it there most of the time...i am losing

> > so

> > > much time at work because of it and its something

> > i'm

> > > to imbarased to tell them about...i'm ready to by

> > > dipers soon, but too imbarassed to doo that, i

> > love

> > > how i look now and can't see myself wearing

> > them....i

> > > don't know what to do, besides quiting eating, but

> > i'm

> > > diabetic, so i can't realy do that...i don't know

> > what

> > > to do any more, all i do is cry my eyes out

> > laately

> > >

> > > i am going total insane and i don't know what to

> > do

> > > about it...i have lost alot of wait...i'm hungry

> > all

> > > the time, but when i eat all i do is have to run

> > to

> > > the bathroom, its less than 7 feet away and i

> > still

> > > can't make it there most of the time...i am losing

> > so

> > > much time at work because of it and its something

> > i'm

> > > to imbarased to tell them about...i'm ready to by

> > > dipers soon, but too imbarassed to doo that, i

> > love

> > > how i look now and can't see myself wearing

> > them....i

> > > don't know what to do, besides quiting eating, but

> > i'm

> > > diabetic, so i can't realy do that...i don't know

> > what

> > > to do any more, all i do is cry my eyes out

> > laately

> > >

> > >

> > >

> > > __________________________________________________

> > >

[Guest guest]

Boy are you not kidding. I've been crying like a faucet this week.

I don't know where the heck all this sensitivity came from all of a

sudden. I've been feeling sorry for myself, then feeling resolute and

strong, then crying for others, then getting mad... my mood is all over the

place. Did the Hallmark commercials pick up in number or something this

week??

I must've gotten my period or something.

(Would that mean this will go away soon??)

T n KC

PS - Watching the news... Police picked up a pit bull that was running

loose, people were running around freaking out all scared... Turns out the

poor dog was just looking for a place to get out of the rain, was a very

nice, almost shy little doggie... poor dog... course, I feel like somebody

should shoot the OWNER of the dog for not providing proper shelter, but I've

probably emitted quite enough editorial for one week... and all in one

afternoon! WooHoo! My work for the week is done! Good thing I had 's

good help today... He's my cat that never leaves me (the other one sleeps on

the bed all day, since it's already " electric blanket " season)... but not

. If I'm at the keyboard, so is he - right on it! Fortunately, he is

trained by now and is right NEXT to it, without TOUCHING it... RIGHT at the

edge though! And he'll walk in front of my face all day long to get my

attention, between my head and monitor, without ever touching the keyboard...

Then he just perches right beside it, looking away, as though he didn't know

where he were sitting... Haha... Yeah... I don't see him. He doesn't see me

either. Of course, he sits there until he gets his head rubbed, then he's

free to go do some other very important cat thing.

<< Crying is good.

I've wanted to do that since the surgery.

For whatever reason(s), I haven't yet been able to.

Let's just have a pity party!

I'll bring the Kleenex!! >>

[Guest guest]

sounds good ;o(

--- esquare726@... wrote:

> Crying is good.

> I've wanted to do that since the surgery.

> For whatever reason(s), I haven't yet been able to.

>

> Let's just have a pity party!

>

> I'll bring the Kleenex!!

>

__________________________________________________

[Guest guest]

Blocks are not permanent. That's because they don't destroy nerves. They

cause a sort of short circuit that stops pain messages from reaching the

brain.

But they can be repeated.

And that's a chance at prolonging relief.

-E