Re: Darn It!

[Guest guest]

In a message dated 12/20/00 8:24:14 PM Pacific Standard Time, sue@... writes:

Hi nne;

Yes, this happens. If anything, the only thing predicable about AIH is that it is unpredictable.

I visited with my GI today as well. My numbers are higher than when I started in August 1998. I asked my doctor today, 'what happened?' And, he really didn't have a response except that there will be flare ups and set backs. Also, both of us are thinking the Imuran is not really working as well as we had hoped or expected.

While mine had never reached the thousand mark (not even close), my AST went from 80 to 126 and ALT went from 85 to 118 in one month.

I WAS on 150mg Imuran, 5mg Prednisone, 600mg Actigall, Prevacid, etc. Now, I'm back to 20mg for 3 months and keeping all the other drugs as is.

I don't get it. In July, I had numbers that were normal with 125mg Imuran and 5mg Prednisone (along with the other drugs). Then in October the numbers jumped to 80+, and now 126 and 118.

I have never been able to reach 'remission' to date. I came close... once... and since then, it seems to be a moving target. Hard to nail down and control.

My GI said that we probably tried to drop the Prednisone too quickly and now we are going to try a 'sustained' level for a longer period of time. This will be my third attempt to get 'remission'. I expect this battle to be about 6-9 months long.

Sleep disorders are common with AIH, and the use of Prednisone. I know. But, have heart, there are some great old shows on TV at 2 in the morning!

Yes, I work full-time and it plays havoc on my job. But, you get use to it after a while.

Sue AIH 12/98

Colorado

nneW5@... wrote:

> Well, followed up with the doc and blood work this week after having > the joint pain back...so frustrating...as I feared (and as the Queen > tried to deny), the counts went up...AST went from 109 to 460, ALT > from 277 to 738 and GGT from 134 to 370. I was feeling so positive > since I started the pred because I responded so quickly...from > having counts in 4 figures down to 3 figures and kept going > down (never reached the double digits but we were knocking on > the door)..until now. So having to start all over again with 60 mg > pred..then down to 40..then 30..then more labs...well @ least I will > be zooming for a couple of days..

> > Is this something that happens a lot? Responding to the prednisone and > then you go backwards? Other than watching my protein intake > ...anything else I can do to improve things? I have not been sleeping > well, and also wonder if being so tired and fatigued is helping to > aggravate things...any thoughts on that? > > Thanks for listening....appreciate the support and sharing!!

>

nne, Sue, I'm sorry to hear of your set-backs. Do you feel stress plays any part in the flare-ups? I ask, in part, because I'm trying to decide whether to return to my extremely stressful job.

Also, I'm always puzzled that my gastro-enterologist told me to eat plenty of protein! No restrictions except for alcohol (my drinking pattern has been a couple of glasses per week, usually with meals), and he said a little alcohol wouldn't really hurt! I'm AIH, incidentally.

Harper

[Guest guest]

Hi nne;

Yes, this happens. If anything, the only thing predicable about AIH is

that it is unpredictable.

I visited with my GI today as well. My numbers are higher than when I

started in August 1998. I asked my doctor today, 'what happened?' And,

he really didn't have a response except that there will be flare ups and

set backs. Also, both of us are thinking the Imuran is not really

working as well as we had hoped or expected.

While mine had never reached the thousand mark (not even close), my AST

went from 80 to 126 and ALT went from 85 to 118 in one month.

I WAS on 150mg Imuran, 5mg Prednisone, 600mg Actigall, Prevacid, etc.

Now, I'm back to 20mg for 3 months and keeping all the other drugs as is.

I don't get it. In July, I had numbers that were normal with 125mg

Imuran and 5mg Prednisone (along with the other drugs). Then in October

the numbers jumped to 80+, and now 126 and 118.

I have never been able to reach 'remission' to date. I came close...

once... and since then, it seems to be a moving target. Hard to nail

down and control.

My GI said that we probably tried to drop the Prednisone too quickly and

now we are going to try a 'sustained' level for a longer period of time.

This will be my third attempt to get 'remission'. I expect this

battle to be about 6-9 months long.

Sleep disorders are common with AIH, and the use of Prednisone. I know.

But, have heart, there are some great old shows on TV at 2 in the morning!

Yes, I work full-time and it plays havoc on my job. But, you get use to

it after a while.

Sue AIH 12/98

Colorado

nneW5@... wrote:

> Well, followed up with the doc and blood work this week after having

> the joint pain back...so frustrating...as I feared (and as the Queen

> tried to deny), the counts went up...AST went from 109 to 460, ALT

> from 277 to 738 and GGT from 134 to 370. I was feeling so positive

> since I started the pred because I responded so quickly...from

> having counts in 4 figures down to 3 figures and kept going

> down (never reached the double digits but we were knocking on

> the door)..until now. So having to start all over again with 60 mg

> pred..then down to 40..then 30..then more labs...well @ least I will

> be zooming for a couple of days..

>

> Is this something that happens a lot? Responding to the prednisone and

> then you go backwards? Other than watching my protein intake

> ...anything else I can do to improve things? I have not been sleeping

> well, and also wonder if being so tired and fatigued is helping to

> aggravate things...any thoughts on that?

>

> Thanks for listening....appreciate the support and sharing!!

>

>

>

>

>

[Guest guest]

Hi Harper;

Stress does play a part in all medical aspects of a body. I can't see

any reason why it would not aggravate AIH as well. My GI obviously

feels the same regarding stress.

I did have a very stressful job until July. I provided my VP a note

from the dr. for 'less stress and more rest' and was promptly moved into

a Programmer Analyst position within the same department. I am very

open also with my VP and Director (I don't have a manager) regarding my

health condition. They are very very supportive.

I have not been given direction regarding protein, ever. BUT, please

remember that your GI maybe seeing blood results that would drive

him/her to suggest that.

I have been told to hold down the alcohol. Like you, I enjoyed a glass

a wine 1-2 times a week with my supper. Now, I only have a 'toasting

drink' for special occasions (i.e. Christmas, New Years). I don't

really miss it much, except when a day is really bad (health or work

related). As a matter of fact, for the most part, alcohol now makes me

a little sick to the stomach and I end up giving my 'drink' to my

husband to finish off.

Next year, I'm interested in seeing a Nutritionist. I am thinking that

I can provide further help in getting to remission is through diet. NOT

diet to just lose weight, but diet to help the body with AIH. Maybe in

the process I can lose some pounds!

Take care,

Sue AIH 12/98

Colorado (brrrrrrrr)

flatcat9@... wrote:

> In a message dated 12/20/00 8:24:14 PM Pacific Standard Time,

> sue@... writes:

>

>

>

> Hi nne;

>

> Yes, this happens. If anything, the only thing predicable about AIH is

> that it is unpredictable.

>

> I visited with my GI today as well. My numbers are higher than when I

> started in August 1998. I asked my doctor today, 'what happened?' And,

> he really didn't have a response except that there will be flare ups

> and

> set backs. Also, both of us are thinking the Imuran is not really

> working as well as we had hoped or expected.

>

> While mine had never reached the thousand mark (not even close), my AST

> went from 80 to 126 and ALT went from 85 to 118 in one month.

>

> I WAS on 150mg Imuran, 5mg Prednisone, 600mg Actigall, Prevacid, etc.

> Now, I'm back to 20mg for 3 months and keeping all the other drugs

> as is.

>

> I don't get it. In July, I had numbers that were normal with 125mg

> Imuran and 5mg Prednisone (along with the other drugs). Then in

> October

> the numbers jumped to 80+, and now 126 and 118.

>

> I have never been able to reach 'remission' to date. I came close...

> once... and since then, it seems to be a moving target. Hard to nail

> down and control.

>

> My GI said that we probably tried to drop the Prednisone too quickly

> and

> now we are going to try a 'sustained' level for a longer period of

> time.

> This will be my third attempt to get 'remission'. I expect this

> battle to be about 6-9 months long.

>

> Sleep disorders are common with AIH, and the use of Prednisone. I

> know.

> But, have heart, there are some great old shows on TV at 2 in the

> morning!

>

> Yes, I work full-time and it plays havoc on my job. But, you get

> use to

> it after a while.

>

> Sue AIH 12/98

> Colorado

>

> nneW5@... wrote:

>

> > Well, followed up with the doc and blood work this week after having

> > the joint pain back...so frustrating...as I feared (and as the Queen

> > tried to deny), the counts went up...AST went from 109 to 460, ALT

> > from 277 to 738 and GGT from 134 to 370. I was feeling so positive

> > since I started the pred because I responded so quickly...from

> > having counts in 4 figures down to 3 figures and kept going

> > down (never reached the double digits but we were knocking on

> > the door)..until now. So having to start all over again with 60 mg

> > pred..then down to 40..then 30..then more labs...well @ least I will

> > be zooming for a couple of days..

> >

> > Is this something that happens a lot? Responding to the

> prednisone and

> > then you go backwards? Other than watching my protein intake

> > ...anything else I can do to improve things? I have not been

> sleeping

> > well, and also wonder if being so tired and fatigued is helping to

> > aggravate things...any thoughts on that?

> >

> > Thanks for listening....appreciate the support and sharing!!

> >

>

>

>

> nne, Sue, I'm sorry to hear of your set-backs. Do you feel stress

> plays

> any part in the flare-ups? I ask, in part, because I'm trying to decide

> whether to return to my extremely stressful job.

>

> Also, I'm always puzzled that my gastro-enterologist told me to eat

> plenty of

> protein! No restrictions except for alcohol (my drinking pattern has

> been a

> couple of glasses per week, usually with meals), and he said a little

> alcohol

> wouldn't really hurt! I'm AIH, incidentally.

> Harper

> eGroups Sponsor

> [Click Here!]

>

<http://rd./M=102308.1038796.2731130.908943/D=egroupmail/S=1700061498:N\

/A=466331/?http://features./webceleb/carrey/>

>

>

>

>

[Guest guest]

Eating healthy is only a small factor. Avoiding alcohol and over the counter meds, herbs, and supplements that are known to irritate the liver are a bigger factor. But, as you suspect, fatigue and stress are perhaps the biggest factor. None of us want to admit that we have to slow down, but it is essential. Prednisone, especially early on, can cause insomnia. You have to nap and sleep as you can to compensate. You have to let others take over some of your load. This is not a case of being weak, it's a matter of life and death. You are ill with a life threatening disease. Sometimes you have to act like it. All of us fight it. Most of us were extremely active people and slowing down was not in our makeup. But...the alternative is far worse, so we do. Be good to yourself. Listen to your body. Don't try to make it do more than it can. When you have a good day, enjoy it but be careful not to overdo it. You'll pay for it the next day.

Don

Terradon Unlimited

http://www.TerradonUnlimited.com

"People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000

-----Original Message-----From: nneW5@... [mailto:nneW5@...]Sent: Wednesday, December 20, 2000 10:05 PM egroupsSubject: [ ] Darn It!Well, followed up with the doc and blood work this week after having the joint pain back...so frustrating...as I feared (and as the Queen tried to deny), the counts went up...AST went from 109 to 460, ALT from 277 to 738 and GGT from 134 to 370. I was feeling so positive since I started the pred because I responded so quickly...from having counts in 4 figures down to 3 figures and kept going down (never reached the double digits but we were knocking on the door)..until now. So having to start all over again with 60 mg pred..then down to 40..then 30..then more labs...well @ least I will be zooming for a couple of days..Is this something that happens a lot? Responding to the prednisone and then you go backwards? Other than watching my protein intake ..anything else I can do to improve things? I have not been sleeping well, and also wonder if being so tired and fatigued is helping to aggravate things...any thoughts on that? Thanks for listening....appreciate the support and sharing!!

[Guest guest]

Thanks, Sue. Lots of big changes for both of us. My gp says maybe this is the best thing that could have happened to me -- to give me incentive to leave a very stressful, under-paid job that often calls for 20 hour days (my husband is one of my employers, and he works harder than I do, which makes it hard to say no.) I guess I would rather have made the decision with my liver intact!

, my husband, returned from Colorado Springs yesterday -- or maybe it was Vail. It was just a one-day trip, but this morning he said maybe it was time he bought some shoes that were suitable for snow.

Harper AIH 5/00

[Guest guest]

In a message dated 12/21/00 8:16:00 AM Pacific Standard Time, donhanson@... writes:

.. . . fatigue and stress are perhaps the biggest factor. None of us want to admit that we have to slow down, but it is essential. Prednisone, especially early on, can cause insomnia. You have to nap and sleep as you can to compensate. You have to let others take over some of your load. This is not a case of being weak, it's a matter of life and death. You are ill with a life threatening disease. Sometimes you have to act like it. All of us fight it. Most of us were extremely active people and slowing down was not in our makeup. But...the alternative is far worse, so we do. Be good to yourself. Listen to your body. Don't try to make it do more than it can. When you have a good day, enjoy it but be careful not to overdo it. You'll pay for !

it the next day.

Don

Terradon Unlimited

My husband thanks you for your letter, which he thinks I needed.

Harper AIH 5/00

[Guest guest]

Thanks, Heidi. Glad to hear from you. You're reinforcing my decision to step out of position at work.

Harper AIH 5/00

[Guest guest]

Hi Sue, Harper and Don,

Thanks for the support and info. Sue, I hate you are having to go

through the " 2 steps forward, one back " routine also. It is really the

pits! Hope you have success this go round with remission..keep me

posted..maybe I can follow your lead there!

Harper, I guess as far as returning to work, only you know how it

would be..if the support you would need would be there, how you feel.

And whether it would be worth it.

Don, I guess that while I listen to my body tell me when something is

really wrong, I dont do a good job listenting when it just wants to

rest...maybe this is its way of telling me to pay better

attention..lol. I will try better. Maybe that will be my only New

Years resolution...listen!

Perhaps stess..and trying to live " normally " (is there such a thing

anymore?) is part of the problem..I guess I am a little stubborn (ok,

maybe more than a little)..I resent the hell out of having AIH and

feel as if by not giving in to it, I am thumbing my nose at it. (my

mom would tell me I am a thickheaded mick!) I havent had a drop of

alcohol in over 6 mos now..not since my first acute flareup landed me

in the hospital. And I have tried to watch what I eat..with some

success..lol. But as soon as I started feeling better, just resumed my

normal activities. Perhaps that is the problem..hell, I dont really

know. I am still working, I love my job but it does have it's moments

(the ones when you want to go screaming out the door while you tear

out your hair); and having a teenager and a preteen @ home, a husband

dealing with his own job related stress, and mom (with her own health

issues) dependant on me..maybe all that added with the holidays has

taken its toll. I've never been good at all at asking people to do

things I normally would do, and I still havent really learned how to

do that. Part of that may be that I don't " look sick " so I really

hesitate to impose or ask..it is just so not me. How do you get past

something so ingrained as that?

BTW, first day back on 60 mg, and havent had a good zoom yet...now

that is a real shame!..lol...

> >

> > > Well, followed up with the doc and blood work this week

after having

> > > the joint pain back...so frustrating...as I feared (and as

the Queen

> > > tried to deny), the counts went up...AST went from 109 to

460, ALT

> > > from 277 to 738 and GGT from 134 to 370. I was feeling so

positive

> > > since I started the pred because I responded so

quickly...from

> > > having counts in 4 figures down to 3 figures and kept going

> > > down (never reached the double digits but we were knocking

on

> > > the door)..until now. So having to start all over again

with 60 mg

> > > pred..then down to 40..then 30..then more labs...well @

least I will

> > > be zooming for a couple of days..

> > >

> > > Is this something that happens a lot? Responding to the

> > prednisone and

> > > then you go backwards? Other than watching my protein

intake

> > > ...anything else I can do to improve things? I have not

been

> > sleeping

> > > well, and also wonder if being so tired and fatigued is

helping to

> > > aggravate things...any thoughts on that?

> > >

> > > Thanks for listening....appreciate the support and

sharing!!

> > >

> >

> >

> >

> > nne, Sue, I'm sorry to hear of your set-backs. Do you feel

stress

> > plays

> > any part in the flare-ups? I ask, in part, because I'm trying to

decide

> > whether to return to my extremely stressful job.

> >

> > Also, I'm always puzzled that my gastro-enterologist told me to

eat

> > plenty of

> > protein! No restrictions except for alcohol (my drinking pattern

has

> > been a

> > couple of glasses per week, usually with meals), and he said a

little

> > alcohol

> > wouldn't really hurt! I'm AIH, incidentally.

> > Harper

> > eGroups Sponsor

> > [Click Here!]

> >

<http://rd./M=102308.1038796.2731130.908943/D=egroupmail/S=17

00061498:N/A=466331/?http://features./webceleb/carrey/>

> >

> >

> >

> >

[Guest guest]

Hi nne,

Nearly all of us are extreme type A personalities. There has been some speculation that the stress that a type A puts on themselves contribute to the onset of autoimmune diseases. So, in some ways we are our worst enemies.

There has been a "letter to People without Hepatitis" that perhaps someone could repost that is a great way to help friends and family understand just how sick you really are.

Crushing fatigue is hard for people, including doctors, to understand. Most people equate sleepy with fatigue. It's nowhere close. When my wife had chemo following a mastectomy last year, she finally understood what my fatigue is like. The best description that I've come up with is asking someone to remember when the last had the "real" flu. You know, when you can't drag yourself out of bed. When even watching TV is too tiring. That's the kind of fatigue we live with every day. It opens a lot of eyes. They begin to realize, as you need to, that rather than being weak, you are being incredibly strong!! Very few people could do the things that you've been doing through the kind of fatigue that you've been experiencing.

Before you were sick, I'm sure you'd give yourself permission to rest after you scrubbed the floors, or did something equally tiring...Now that you are sick, just tying your shoes could leave you just a fatigued!! So, give yourself permission to rest. You need to. You deserve it. Start looking at all that you've been able to do, rather than what you haven't. Forget the past. This is today. Today you have a deadly disease. If you had cancer, you'd have people falling all over themselves telling you to take it easy, to call if you ever need help. AIH is just as serious as cancer. It just doesn't have the outward signs. Heck, if we jaundice, we look like we have a healthy tan!! LOL!

BTW, denial is an important step in the process of dealing with a disabling illness. It sounds like you're starting to get angry. That's also an important step. There's a lot to be angry about. Just like any loss, you'll also grieve. Then finally there will be acceptance. That's when you'll realize that not only are things not so bad, in many respects they are much better. That's the point where I'm at. Look at my tag line. It is so true!

Merry Christmas, everyone!!

Don

Terradon Unlimited

http://www.TerradonUnlimited.com

"People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000

[Guest guest]

Hi everybody. I don't post very often so you probably don't know me.

Well, I believe that stress have a hole lot to say in dealing with

this decease. I had a lot of stress in my life right before I got

sick, and didn't know how to deal with the stress. I've had AIH for 7

years, and the times when I got my flareups was when I for some

reason had something to stress over.

I've gotten to the point where nothing can stress me. I'm happy and

just do what I can do.

If you don't feel like cleaning the hole house today, don't. Maybe

you will tomorrow

Heidi from CA

> Hi nne,

>

> Nearly all of us are extreme type A personalities. There has been

some

> speculation that the stress that a type A puts on themselves

contribute to

> the onset of autoimmune diseases. So, in some ways we are our worst

enemies.

>

> There has been a " letter to People without Hepatitis " that perhaps

someone

> could repost that is a great way to help friends and family

understand just

> how sick you really are.

>

> Crushing fatigue is hard for people, including doctors, to

understand. Most

> people equate sleepy with fatigue. It's nowhere close. When my wife

had

> chemo following a mastectomy last year, she finally understood what

my

> fatigue is like. The best description that I've come up with is

asking

> someone to remember when the last had the " real " flu. You know,

when you

> can't drag yourself out of bed. When even watching TV is too

tiring. That's

> the kind of fatigue we live with every day. It opens a lot of eyes.

They

> begin to realize, as you need to, that rather than being weak, you

are being

> incredibly strong!! Very few people could do the things that you've

been

> doing through the kind of fatigue that you've been experiencing.

>

> Before you were sick, I'm sure you'd give yourself permission to

rest after

> you scrubbed the floors, or did something equally tiring...Now that

you are

> sick, just tying your shoes could leave you just a fatigued!! So,

give

> yourself permission to rest. You need to. You deserve it. Start

looking at

> all that you've been able to do, rather than what you haven't.

Forget the

> past. This is today. Today you have a deadly disease. If you had

cancer,

> you'd have people falling all over themselves telling you to take

it easy,

> to call if you ever need help. AIH is just as serious as cancer. It

just

> doesn't have the outward signs. Heck, if we jaundice, we look like

we have a

> healthy tan!! LOL!

>

> BTW, denial is an important step in the process of dealing with a

disabling

> illness. It sounds like you're starting to get angry. That's also an

> important step. There's a lot to be angry about. Just like any

loss, you'll

> also grieve. Then finally there will be acceptance. That's when

you'll

> realize that not only are things not so bad, in many respects they

are much

> better. That's the point where I'm at. Look at my tag line. It is

so true!

>

> Merry Christmas, everyone!!

>

> Don

> Terradon Unlimited

> http://www.TerradonUnlimited.com

> " People who ask me how we can still have such a positive attitude

after all

> we've been through, have it all wrong.We've been able to get

through all

> that we have BECAUSE we have a positive attitude " . Don Hanson 8/2000

[Guest guest]

Hi Harper;

Yes, the changes are the hardest. Like Don said, I was a very active

person. Not necessarily a type " A " , but always having a extremely clean

house, working at our brewery 60+ hours a week (NO I DID NOT CONSUME

MASSIVE QUANTITIES OF BEER, I don't really care for beer). I think I

was a work-a-holic. Always striving for efficiencies and perfection.

I'm in Denver and it's been pretty cold here lately. I can't give up my

'birk' shoes - I peek out the window and gauged the depth of the snow

and see if I can 'get away' wearing my sandals to the mail box!

Sue AIH 12/98

Colorado

flatcat9@... wrote:

> Thanks, Sue. Lots of big changes for both of us. My gp says maybe this is

> the best thing that could have happened to me -- to give me incentive to

> leave a very stressful, under-paid job that often calls for 20 hour days

> (my

> husband is one of my employers, and he works harder than I do, which

> makes it

> hard to say no.) I guess I would rather have made the decision with my

> liver

> intact!

>

> , my husband, returned from Colorado Springs yesterday -- or maybe it

> was Vail. It was just a one-day trip, but this morning he said maybe it

> was

> time he bought some shoes that were suitable for snow.

> Harper AIH 5/00

> eGroups Sponsor

> [Click Here!]

>

<http://rd./M=102308.1038796.2731130.908943/D=egroupmail/S=1700061498:N\

/A=466330/?http://www.>

>

>

>

>

[Guest guest]

LOL!! I'm still wearing clogs. 18" of snow on the ground and I refuse to wear boots. Supposed to be a -45 wind chill right now, so I guess I'll have to wear a windbreaker when I take out the dog....<grin>

Don - in Frosty Minneapolis

Terradon Unlimited

http://www.TerradonUnlimited.com

"People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000

-----Original Message-----From: Sue Irons [mailto:sue@...]Sent: Thursday, December 21, 2000 7:17 PM egroupsSubject: Re: [ ] Darn It!Hi Harper;Yes, the changes are the hardest. Like Don said, I was a very active person. Not necessarily a type "A", but always having a extremely clean house, working at our brewery 60+ hours a week (NO I DID NOT CONSUME MASSIVE QUANTITIES OF BEER, I don't really care for beer). I think I was a work-a-holic. Always striving for efficiencies and perfection.I'm in Denver and it's been pretty cold here lately. I can't give up my 'birk' shoes - I peek out the window and gauged the depth of the snow and see if I can 'get away' wearing my sandals to the mail box!Sue AIH 12/98Coloradoflatcat9@... wrote:> Thanks, Sue. Lots of big changes for both of us. My gp says maybe this is> the best thing that could have happened to me -- to give me incentive to> leave a very stressful, under-paid job that often calls for 20 hour days > (my> husband is one of my employers, and he works harder than I do, which > makes it> hard to say no.) I guess I would rather have made the decision with my > liver> intact!> > , my husband, returned from Colorado Springs yesterday -- or maybe it> was Vail. It was just a one-day trip, but this morning he said maybe it > was> time he bought some shoes that were suitable for snow.> Harper AIH 5/00> eGroups Sponsor> [Click Here!] > <http://rd./M=102308.1038796.2731130.908943/D=egroupmail/S=1700061498:N/A=466330/?http://www.> > > > >

[Guest guest]

Thank you Don. I think that that is just what I needed to hear right

now. Makes me realize that I cant hope someone will pick up

telepathically that I am not up to par .. I need to go ahead and say

it, and stop minimizing " my problem " . And to do so with the positive

attitude you so well exemplify. A very Merry Christmas to you...and

thank you once again.

> Hi nne,

>

> Nearly all of us are extreme type A personalities. There has been

some

> speculation that the stress that a type A puts on themselves

contribute to

> the onset of autoimmune diseases. So, in some ways we are our worst

enemies.

>

> There has been a " letter to People without Hepatitis " that perhaps

someone

> could repost that is a great way to help friends and family

understand just

> how sick you really are.

>

> Crushing fatigue is hard for people, including doctors, to

understand. Most

> people equate sleepy with fatigue. It's nowhere close. When my wife

had

> chemo following a mastectomy last year, she finally understood what

my

> fatigue is like. The best description that I've come up with is

asking

> someone to remember when the last had the " real " flu. You know, when

you

> can't drag yourself out of bed. When even watching TV is too tiring.

That's

> the kind of fatigue we live with every day. It opens a lot of eyes.

They

> begin to realize, as you need to, that rather than being weak, you

are being

> incredibly strong!! Very few people could do the things that you've

been

> doing through the kind of fatigue that you've been experiencing.

>

> Before you were sick, I'm sure you'd give yourself permission to

rest after

> you scrubbed the floors, or did something equally tiring...Now that

you are

> sick, just tying your shoes could leave you just a fatigued!! So,

give

> yourself permission to rest. You need to. You deserve it. Start

looking at

> all that you've been able to do, rather than what you haven't.

Forget the

> past. This is today. Today you have a deadly disease. If you had

cancer,

> you'd have people falling all over themselves telling you to take it

easy,

> to call if you ever need help. AIH is just as serious as cancer. It

just

> doesn't have the outward signs. Heck, if we jaundice, we look like

we have a

> healthy tan!! LOL!

>

> BTW, denial is an important step in the process of dealing with a

disabling

> illness. It sounds like you're starting to get angry. That's also an

> important step. There's a lot to be angry about. Just like any loss,

you'll

> also grieve. Then finally there will be acceptance. That's when

you'll

> realize that not only are things not so bad, in many respects they

are much

> better. That's the point where I'm at. Look at my tag line. It is so

true!

>

> Merry Christmas, everyone!!

>

> Don

> Terradon Unlimited

> http://www.TerradonUnlimited.com

> " People who ask me how we can still have such a positive attitude

after all

> we've been through, have it all wrong.We've been able to get through

all

> that we have BECAUSE we have a positive attitude " . Don Hanson 8/2000

[Guest guest]

Sue, it's time you went to bed! It's one a.m. where you are!

Some day, when we know each other a little better, perhaps you'll tell me which brewery you were involved with, what kind of beer you made. I'm not much of a drinker, but I savor what I do drink. And I do like beer quite a lot -- just not a lot of it. I do miss the taste of a glass of beer with Thai food, say.

Harper (San Francisco)

[Guest guest]

Uuuh, did we say something about stress earlier? My goodness.

Harper San Francisco

[Guest guest]

Don that was a great letter. Yes slowing down is hard. going from a person who worked 50 hours a week and managed 20+ people to someone that has to nap and sleep 12 hours a night has been hard, but when I tried to go back to work, my liver problems flared back up within 2 months and i have had a slight flare up of my Lupus. Remeber we have to rest and be thankful. I know we wish we werent ill, but well, but we cant change it. So maybe we can look at it this way. We get more time with our loved ones, and instead of being burried only in our work and fast lives, we actually get to know whats happening in the world, and have commpassion we may not have had otherwise.

Merry Christmas!

Christi

[Guest guest]

Harper, I applaud you. When I went to my doctor a couple months ago, and he told me about my liver problems, I said what am I going to do? I have to work! his reply: YOU CANT WORK WITHOUT A LIVER! Wow what a blast to my type A personality. He was right. They quickly put me on prednison, took me off celebrex, had me consult with my ruemotologist. Within 1 1/2 months my counts are now closer to normal, and I can enjoy, or sometimes get irritated with my family. Im lucky though, even though I lost a lot of income, I get ssdi, because I have not worked in 5 years, and was on ssdi's trial for going back to work. But my doctors words ring hard when I feel down, and remmber with Lupus and liver problems I have to think of my health first, because I have to be around for my family.

merry Christmas

Christi

[Guest guest]

Harper, I also miss a good beer. LOL. My guess is that Sue worked for coors, they are based out of Colorado. Am I right Sue? lol

Well im in So Ca and still wearing flip flops

Christi

[Guest guest]

Hi Harper;

I'm in Denver. I couldn't sleep for the last two nights.

We started a micro brewery and owned/ran it for about 4-5 years.

Located in Lakewood Colorado. There was a hostile takeover from an

officer/investor and because of harassment/contract

interference/violations of discrimination I'm suing him. I have won

every court case all the way up to the Colorado Supreme Court (or so I

hear from my attorney). I was the VP of Administration and Finance. I

also brewed 200 gallons of beer when the guys needed help. That was fun!

We brewed; dark ales, lagers, pilsners, a little wheat beer. We

distributed to 13 states by the time we were pushed out, including

California.

The pain of the discrimination/harassment is over. It was very scary

and I did fear for my life at times around the perpetrator. I did have

some comfort that I hired a police officer (who was interested in making

beer) on a part-time basis. He knew of the goings on. He is now one of

our best friends and have holiday meals and get together.

The micro brewery was called; Irons Brewing Company. It is now called

Ironworks Brewing Company and has passed hands for the 4th time (I

think). The tanks in the brewery still have my handwriting on them

marking the measurements (gallons) on the outside. Very strange seeing

that after 10+ years.

I'm happily back at my old employer (was there prior to the brewery) and

am a Programmer Analyst. A lot less stress and more pay!

Sue AIH 12/98

Colorado

flatcat9@... wrote:

> Sue, it's time you went to bed! It's one a.m. where you are!

>

> Some day, when we know each other a little better, perhaps you'll tell me

> which brewery you were involved with, what kind of beer you made. I'm not

> much of a drinker, but I savor what I do drink. And I do like beer quite a

> lot -- just not a lot of it. I do miss the taste of a glass of beer with

> Thai food, say.

>

> Harper (San Francisco)

> eGroups Sponsor

> [Click Here!]

>

<http://rd./M=102308.1038796.2731130.908943/D=egroupmail/S=1700061498:N\

/A=466331/?http://features./webceleb/carrey/>

>

>

>

>

[Guest guest]

In a message dated 12/22/00 9:51:03 AM Pacific Standard Time, christibro33@... writes:

Yes slowing down is hard. going from a person who worked 50 hours a week and managed 20+ people to someone that has to nap and sleep 12 hours a night has been hard, but when I tried to go back to work, my liver problems flared back up within 2 months and i have had a slight flare up of my Lupus.

These messages are really helpful to me. I'm not visibly ill, not in pain, I'm very lucky -- and therefore I feel quite guilty about not feeling able to work, wanting to nap, feeling I MUST nap. (My life before didn't recognize any need for regular sleep or food or play.) I've been really worried that this was a psychological problem. My husband keeps saying "listen to your body, be good to yourself", but I'm secretly afraid I'm just turning into a lazy slob. It's a great relief to hear that this perceived need for rest is real and common.

I really do wonder if a statistically significant number of people with liver diseases make unusual demands on themselves (type A's.) Has anyone seen anything on this hypothesis, or does it just seem so in our little self-selected sample?

Harper

[Guest guest]

In a message dated 12/22/00 10:04:29 AM Pacific Standard Time, christibro33@... writes:

I have to think of my health first, because I have to be around for my family.

Yes, I've finally pounded it into my skull that I am more valuable to my family than my not-large income is. Harper

[Guest guest]

In a message dated 12/22/00 10:16:42 AM Pacific Standard Time, christibro33@... writes:

Harper, I also miss a good beer. LOL. My guess is that Sue worked for coors, they are based out of Colorado. Am I right Sue? lol

Well im in So Ca and still wearing flip flops

Christi

Last New Year's (2000) we bought a considerable amount of unusually good champagne but didn't drink it because family had to cancel their trip, and then we wound up working on New Year's Eve until just before midnight. I'm beginning to catch on that I won't be drinking that champagne. However, I did have a couple of sips of mediocre champagne recently when we "broke ground" unofficially for a little vacation house. The rest of my glass I poured ceremonially into the hole we dug on the site. I didn't feel so great after those few sips of champagne, but the mild malaise could have been coincidental.

[Guest guest]

In a message dated 12/22/00 10:35:53 AM Pacific Standard Time, donhanson@... writes:

During this holiday season, take time to reflect. Take time to find the silver lining. It's there. Your challenge is to find it and embrace it.

I can't think of any way to express what I want to say without sounding Pollyanna-ish, but I think constantly of my good fortune. I truly do. I am much more aware of it now than I was before I became ill.

Don, I'm sorry you've had such a hard time -- and I'm glad you've had such a good time.

Harper

[Guest guest]

In a message dated 12/22/00 11:40:29 AM Pacific Standard Time, donhanson@... writes:

There have been some small studies that seem to indicate a correlation between the stress created by type A's and autoimmune diseases.

If you ever run into a reference (as opposed to me purely anecdotal "evidence"), let me know. It is interesting.

Harper

[Guest guest]

Christi,

That is so right! I went from being a top salesman making nearly 6 figures to a zero. We lost all of our toys, had to file bankruptcy. My mom died suddenly leaving me to take care of my dad. His health is failing. My wife had breast cancer. All in the 3 years since I was diagnosed.

Now, I had a choice to make. I could choose to look only at the bad in my life, or I could try to find the good. At times it seemed like a real struggle! <grin> But, not being in sales took away a ton of stress, gave me time to spend with my kids, and because there was less stress, they actually enjoyed having me around!! Getting rid of the toys made us all realize that family is what is important in life, not toys or money. I still miss my mom every day, but at least I could spend her last days with her, not work. It was a great comfort to both of us. Taking care of my dad has allowed me to see him in a much different light. Terri's breast cancer brought both of us closer together and really solidified our family...and I had the time to spend helping her through her journey. So...being sick, losing my job, etc. have all been wonderful blessings!! I am very grateful that I've had the opportunity to face these challenges and to come out the better for it.

During this holiday season, take time to reflect. Take time to find the silver lining. It's there. Your challenge is to find it and embrace it.

<<<<< hugs >>>>>

Don

Terradon Unlimited

http://www.TerradonUnlimited.com

"People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000

-----Original Message-----From: christibro33@... [mailto:christibro33@...]Sent: Friday, December 22, 2000 11:48 AM egroupsSubject: Re: [ ] Darn It!Don that was a great letter. Yes slowing down is hard. going from a person who worked 50 hours a week and managed 20+ people to someone that has to nap and sleep 12 hours a night has been hard, but when I tried to go back to work, my liver problems flared back up within 2 months and i have had a slight flare up of my Lupus. Remeber we have to rest and be thankful. I know we wish we werent ill, but well, but we cant change it. So maybe we can look at it this way. We get more time with our loved ones, and instead of being burried only in our work and fast lives, we actually get to know whats happening in the world, and have commpassion we may not have had otherwise. Merry Christmas! Christi