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I have been fighting hard to keep working a life as normal as possible and

as you all know in many ways that is just denial. My pain is out of control

so now I am on the Duragesic patch 100 mg and Diludid for the break through

pain. He has also doubled my nausea drugs and vomiting still has not slowed

down. Frequent bloody stood and 5 enzymes with each meal are just not doing

the trick. Not much is helping.

My last cat scan and hospitalization was in April so my doctor has called in

another GI Dr Gray he specializes in Necrotizing Pancreatitis and he is very

aggressive. Got me set for a cat scan next week we suspect my cysts may have

grown, then me mentions a scope, ERCP and possible surgery. So you all know

the drill and I can deal with that.

what has gotten me down is the fact I cannot work anymore. I am vomiting and

exhausted by the time I get dressed in the morning. I hurt so bad even with

the meds. I am Diabetic and take six shots a day. Very, very high doses 188

units of N alone and R is a sliding scale my 2 week average is 331. So now I

am to sick to work, and feel hopeless and very sad. I just can't quit

crying.

I know I should be so happy I have good doctors and benefits and very

supportive family. I see how so many of you struggle and I so admire your

resolve. I envy you. I have been told how brave I have been trying to

maintain work and home trying to push the pain away and trying to live with

this.

No I am going on disbility. As hard as I have fought this has taken so much

of my life in such a short time. I accute attck last October has changed my

life. I have always been diabetic but did not need shots until this. I am

moving to the suburns because the cost of living is much less, I just

finsihed my last week at work. (a job I love) I am sad. I feel as if I am

failed and been defeated. That just makes me feel awful and then I feel

worse because I know so many people have lost so much more. So there it is

my rant...my venting...whatever you want to call it. I thank you for

reading/listening...I think I'll go to bed now.

I hope you all have a weeeknd that feeds your soul.

Michele

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Michele,

don't feel bad for mourning your having to give up your job. That is

perfectly normal and you are entitled to feel sad about it. I also had

to give up working in January and I miss it so much. I too loved my

job. But I'm also aware that I just wasn't capable of doing it anymore,

and I wasn't at the constant vomiting stage (still am not). So you

lasted longer than I did. I came really close to being fired and losing

all my benefits. There is nothing wrong with admitting that you cannot

continue to work with this disease and you have been brave to try and

deal with it for so long. I also am diabetic too, though I've been

insulin dependent since I was diagnosed at 10. And I know how hard that

is to deal with. You have not failed and been defeated just because you

have admittted that you can no longer work. This is a horrible disease

and after a while, with the fatigue, vomiting, nausea and pain, it just

becomes impossible to continue holding down a job, any job. I just

wanted you to know you were not alone in the way you are feeling for

having to quit working. Feel free to vent or rant or whatever whenever

you need to. We are here ane ready to listen to you whenever you need us.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

California and Southwestern Regional Representative

Pancreatitis Association, International

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

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Kibmber,

Thank you for you kind words of encouragement. When I woke up in ICU I knew

my life had changed and would continue to do so. But now it seems to have

gone from changing to slipping away. So I count my blessing and hope this

slows things down for me.

How are you doing? Do you find as you Pancreatitis gets worse your Diabetes

flares more? I do. It seems as if one fuels the other at times.

I hope you have a beautiful day.

Michele

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,

I'm doing okay today. Was in a some pain earlier this morning, but it's

calmed down with the pain meds. Some days are bad and some days are

good. I've learned to just take it one day at a time.

As for the diabetes. I'm not sure it flares, but it does seem to get

more brittle and harder to control when I have an acute attack. But

then, I've been diabetic for twenty-two years. I was actually diagnosed

with diabetes before I started showing obvious pancreatitis problems,

though they think the pancreatitis caused the diabetes now since my

pancreatitis was caused by a birth defect in the pancreas called a

pancreas divisum (divided pancreatic ducts). It's a complicated system,

the pancreas. The doctors also think I had two acute attacks when I was

around 3 and 4 since I had severe abdominal pain that they couldn't

diagnosed (In 1973/74, they didn't think to check a child's amylase and

lipase levels). Even today they rarely think to check a child for

pancreatitis.

Hang in there,

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

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  • 4 years later...
Guest guest

I agree that's why I went back to school, I was so ready to get the old back, even though that will never happen.

but some good news on school even with the cognitive problems and short term memory I am maintaining a GPA OF 3.0

many hugs and blessings and a pain free day jessica in PaCreate a Home Theater Like the Pros. Watch the video on AOL Home.

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Guest guest

I agree that's why I went back to school, I was so ready to get the old back, even though that will never happen.

but some good news on school even with the cognitive problems and short term memory I am maintaining a GPA OF 3.0

many hugs and blessings and a pain free day jessica in PaCreate a Home Theater Like the Pros. Watch the video on AOL Home.

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Guest guest

One fo the biggest challenges we face with chronic

illness is the loss of our identity. So many of us

had jobs and careers we loved, and can no longer do

them.

Is it wrong to feel the loss, and grieve what has been

changed. NO!!

Guys, we've been dealt lifes greatest challenge. To

have to find new ways to balance our marriages, our

relationships, or roles as mother or father, to lose

the ability to hike or camp or ski or ride a bike

through the park-- to sit comfortably at the kids

soccer and baseball games-- these are all losses.

I so wish I had the energy to write more about the 5

Stages of Grieving-- you can find many posts on this

in our ARCHVIES-- and please, please read them!

It is so important that you honor these feelings,

share them with your family, and learn that you will

get thru this- with changes in how you get through

your days.

My heart goes out to you as you go through this partof

the journey. Know that we are here to help you through

it. You are no longer alone in this-- and it's ok to

feel the loss.

Love to all,

Tracie

NS Co-owner/moderator

--- Tammy wrote:

> My hair is growing back in slowly...but not

> completely. Where it

> fell out in clumps, it is still a little sparse. I

> had to wear a wig

> from about October on. Now it just looks like I

> have a really,

> really short hairdo with hair that is thinning in

> spots! And to

> think when that symptom appeared I thought it was

> devastating. To

> only have that one back, and not the severe

> headaches, sore painful ,

> weak muscles, dizziness, unsteady walk! I go to the

> doctor in one

> week...hopefully with answers from my lab work and

> chest x ray. I

> was just talking to my husband, telling him how I

> feel like giving

> up...I mean, how long is a person supposed to be in

> pain everyday

> with no medication to at least try to help. My

> lifestyle is so

> different from how it used to be, and somedays I am

> in so much pain I

> just wonder why 7 months have gone by with no

> answers, no one giving

> me any hope, any pain relief. Some days my head

> hurts so bad I

> wonder if I will make it to the next day. Or

> somedays I can't get up

> out of a chair because my legs wont work...How long

> before some

> doctor tells me he can give me some medicine to help

> me. Please,

> everyone, pray for me that I get some results next

> Thursday at the

> doctor and he will know what is wrong and put me on

> some medicine.

> It is hard enough to have a huge lifestyle change,

> but not even

> knowing why makes it hard to accept the change.

> Sorry for going on

> and on, just dont feel like I have anyone who

> understands...my

> husband tries but cant quite get it like someone who

> lives everyday

> in pain. Thank you to all who have read what I have

> to write and who

> have written to me...especially since I havent even

> gotten a

> diagnosis yet, just that neurosarc is a possibility,

> yet you all have

> welcomed me. Thank you

> Tammy

>

> -- In Neurosarcoidosis ,

> quiltenbe@... wrote:

> >

> > Did your hair grow back??? Cause my sister Diane,

> is going through

> the same

> > thing right now and the docs are trying to figure

> out just what she

> has. Her

> > hair is falling out and she's so depressed about

> it. She's a

> beautiful, and I

> > do mean beautiful woman and it's so hard for her

> to go to work

> everyday like

> > that. They think it's Lupus of Sjogrens or sarc.

> Her rheumo doc

> told her that

> > our genes are awful. Her other symptoms are

> extremely dry eyes,

> mouth sores,

> > fatigue, weight loss. Her husband thinks she's

> making a mountain

> out of a

> > molehill. BonnieB

> >

> >

> >

> > **************Create a Home Theater Like the Pros.

> Watch the video

> on AOL

> > Home.

> >

>

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15?

> ncid=aolhom00030000000001)

> >

>

>

>

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Guest guest

One fo the biggest challenges we face with chronic

illness is the loss of our identity. So many of us

had jobs and careers we loved, and can no longer do

them.

Is it wrong to feel the loss, and grieve what has been

changed. NO!!

Guys, we've been dealt lifes greatest challenge. To

have to find new ways to balance our marriages, our

relationships, or roles as mother or father, to lose

the ability to hike or camp or ski or ride a bike

through the park-- to sit comfortably at the kids

soccer and baseball games-- these are all losses.

I so wish I had the energy to write more about the 5

Stages of Grieving-- you can find many posts on this

in our ARCHVIES-- and please, please read them!

It is so important that you honor these feelings,

share them with your family, and learn that you will

get thru this- with changes in how you get through

your days.

My heart goes out to you as you go through this partof

the journey. Know that we are here to help you through

it. You are no longer alone in this-- and it's ok to

feel the loss.

Love to all,

Tracie

NS Co-owner/moderator

--- Tammy wrote:

> My hair is growing back in slowly...but not

> completely. Where it

> fell out in clumps, it is still a little sparse. I

> had to wear a wig

> from about October on. Now it just looks like I

> have a really,

> really short hairdo with hair that is thinning in

> spots! And to

> think when that symptom appeared I thought it was

> devastating. To

> only have that one back, and not the severe

> headaches, sore painful ,

> weak muscles, dizziness, unsteady walk! I go to the

> doctor in one

> week...hopefully with answers from my lab work and

> chest x ray. I

> was just talking to my husband, telling him how I

> feel like giving

> up...I mean, how long is a person supposed to be in

> pain everyday

> with no medication to at least try to help. My

> lifestyle is so

> different from how it used to be, and somedays I am

> in so much pain I

> just wonder why 7 months have gone by with no

> answers, no one giving

> me any hope, any pain relief. Some days my head

> hurts so bad I

> wonder if I will make it to the next day. Or

> somedays I can't get up

> out of a chair because my legs wont work...How long

> before some

> doctor tells me he can give me some medicine to help

> me. Please,

> everyone, pray for me that I get some results next

> Thursday at the

> doctor and he will know what is wrong and put me on

> some medicine.

> It is hard enough to have a huge lifestyle change,

> but not even

> knowing why makes it hard to accept the change.

> Sorry for going on

> and on, just dont feel like I have anyone who

> understands...my

> husband tries but cant quite get it like someone who

> lives everyday

> in pain. Thank you to all who have read what I have

> to write and who

> have written to me...especially since I havent even

> gotten a

> diagnosis yet, just that neurosarc is a possibility,

> yet you all have

> welcomed me. Thank you

> Tammy

>

> -- In Neurosarcoidosis ,

> quiltenbe@... wrote:

> >

> > Did your hair grow back??? Cause my sister Diane,

> is going through

> the same

> > thing right now and the docs are trying to figure

> out just what she

> has. Her

> > hair is falling out and she's so depressed about

> it. She's a

> beautiful, and I

> > do mean beautiful woman and it's so hard for her

> to go to work

> everyday like

> > that. They think it's Lupus of Sjogrens or sarc.

> Her rheumo doc

> told her that

> > our genes are awful. Her other symptoms are

> extremely dry eyes,

> mouth sores,

> > fatigue, weight loss. Her husband thinks she's

> making a mountain

> out of a

> > molehill. BonnieB

> >

> >

> >

> > **************Create a Home Theater Like the Pros.

> Watch the video

> on AOL

> > Home.

> >

>

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15?

> ncid=aolhom00030000000001)

> >

>

>

>

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Guest guest

, I applaud you! I know how much of a

challenge this is-- and you keep putting one foot in

front of the other !

Hugs,

Tracie

--- JessicAbouhamama@... wrote:

>

>

> I agree that's why I went back to school, I was so

> ready to get the old

> back, even though that will never happen.

>

> but some good news on school even with the cognitive

> problems and short term

> memory I am maintaining a GPA OF 3.0

>

> many hugs and blessings and a pain free day

> jessica in Pa

>

>

>

> **************Create a Home Theater Like the Pros.

> Watch the video on AOL

> Home.

>

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\

000000001)

>

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Guest guest

, I applaud you! I know how much of a

challenge this is-- and you keep putting one foot in

front of the other !

Hugs,

Tracie

--- JessicAbouhamama@... wrote:

>

>

> I agree that's why I went back to school, I was so

> ready to get the old

> back, even though that will never happen.

>

> but some good news on school even with the cognitive

> problems and short term

> memory I am maintaining a GPA OF 3.0

>

> many hugs and blessings and a pain free day

> jessica in Pa

>

>

>

> **************Create a Home Theater Like the Pros.

> Watch the video on AOL

> Home.

>

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\

000000001)

>

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Guest guest

WTG JESSICA!!

Re: Life changes

I agree that's why I went back to school, I was so ready to get the old back, even though that will never happen.

but some good news on school even with the cognitive problems and short term memory I am maintaining a GPA OF 3.0

many hugs and blessings and a pain free day jessica in Pa

Create a Home Theater Like the Pros. Watch the video on AOL Home.

No virus found in this incoming message.Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.1/1347 - Release Date: 3/27/2008 7:15 PM

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Guest guest

WTG JESSICA!!

Re: Life changes

I agree that's why I went back to school, I was so ready to get the old back, even though that will never happen.

but some good news on school even with the cognitive problems and short term memory I am maintaining a GPA OF 3.0

many hugs and blessings and a pain free day jessica in Pa

Create a Home Theater Like the Pros. Watch the video on AOL Home.

No virus found in this incoming message.Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.1/1347 - Release Date: 3/27/2008 7:15 PM

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