Re: Long-term outlook/work

[Guest guest]

:

Welcome to the group. I have had AIH since October 1997 but I know it was

before when I got it but diagnosed in Oct. I had a full time job, a husband,

and a daughter. Besides a large 4 bedroom home to take care. I was off work

for 3 months and went back Jan 1998 for 5 hours a day. Went to Mayo Clinic

the first time in March 1998. I have my doctor here at home that takes care

of me in between visits. I relapsed three times since October 1997. Then I

would work 4-5 hours a day but only at night. When I relapsed in June 1999

my doctor in town was very upset to find I was work 5 1/2 hours a day and put

my down to four hours a day. I fatagued and with the weight gain from the

meds I look like I am pregnant. The company I worked for applied for long

term disability for me in April 1999. I have worked all summer in the

evening hours and was waiting to go back to the Mayo at the end of September.

I insurance company approved long term disability insurance which was good

and bad. My employer met with me last week and I was told that I did not

have a job in the office anymore due to the hours and the only thing I could

do is work two hours a night during dinner hour for the warehouse. Needless

to say I will not take the two hours a day so my doctor is writing a letter

to my job and as of Friday I will be a disabled person and will collect

insurance until I am 65. I also can start paper work on the government

disability because I will have my two years waiting period in April 2000. So

you see I had to quit work or I should say I was forced to quit work but I

think it is the best for me. The only thing I would suggest is to not push

yourself and listen to your body telling you to slow down. I have been very

careful and I have pretty well kept it under control.

Sue AIH

Wisconsin

[Guest guest]

,

When I was diagnosed I was working as a sales manager for a publishing

company managing a group of people spread throughout the Midwest. My job

involved 12 hour work days and a fair amount of travel. I also am a mother

to two small children and a wife to a man who runs his own business out of

our home. Needless to say, I was swamped. The pace of my life was

unhealthy. I knew this before I resigned because the stress level was just

too high around this place. I quit my job and have cut back on the amount of

social engagements that we attend. Previously we were extremely social and

rarely spent an evening at home as a family. Life is different now and much

slower. I truly believe that this is very much part of the reason that I am

alive and doing so well today. I am on 50 mgs of Imuran and have been weaned

off the prednisone entirely and my enzymes are normal! In my opinion,

minimizing stress is a major factor in healing. You need to ask yourself how

stressed you are now and how much additional stress would the travel and

increased responsibilities add. Some people handle these things better than

others. I loved travel and my job, but it was still stressful. This stress

just became a way of life for me. If it were me , I would not take on

anything additional until you take on healing. I'm a believer that there is

much you can do to facilitate your treatment other than just popping the

pills. For me this was reducing my work responsibilities, indulging in

meditation, focusing on my diet and spending more time with my food

preparation and reading and researching everything I can about AIH and liver

healing. Hope you have peace with whatever decision you make.

Best Wishes, Roxanne

[Guest guest]

,

my son is 10,, diagnosed with AIH at age 3, also with enzymes @1600. Has

been on various doses of both pred and imuran with no change in his

lifestyle. i wouldn't change a thing unless your body gives you signs that

you need to. he plays competitive sports (except football), swims, has a

great time in life. i had also asked the docs about any limitations and they

said none. just listen to your body and what it tells you just as though you

were healthy. good luck. hope you fight it well.

[Guest guest]

,

I think that it's wonderful that your son and other children with this

disease go on with life. They don't view themselves as being limited,

obviously, and do as much as their bodies will allow them to do.

I suspect that we adults become governed by fear and the knowledge that we

have a serious disease. The more I think of myself as " sick " , the more

sick I feel!

Take care,

Geri

[Guest guest]

Thanks to all of you who have responded so far to give me an idea of what

you've faced longer-term with AIH, especially as to work issues. It's been

a great help. I would still like to hear from others, too. And, here's

another question for you all: Is the weight gain from prednisone

" inevitable " ? Does it " just happen " regardless of what you try to avoid it,

or can it be controlled with diet and exercise (assuming one can get enough

exercise)? How long were you on the prednisone before the weight gain came

on? Have some of you not gained weight? Just wondering . . .

[ ] Digest Number 268

---------------------------

[Guest guest]

,

In my case I have gained weight. It initially took a couple of months to

happen but I was originally on large doses. I have the hair on the face and

almost every other side affect from this drug. But over time I have heard

that there are people that are less affected from this drug. I tried to

control it, exercise was out because of the fatigue. I worked before

contracting the disease as a Chef, I was lucky in that my husband took over

managing a business and I can stay at home and do the book work. It takes a

lot, because there is a lot, but I am fortunate that I can do it at my own

pace. I'm sure there are not too many out there that are that lucky.

Back to the weight, I have told this story before but for you now. I did

all the things to try and get rid of the weight I even went to weight

watchers and told them I was on pred and all the other meds. They told me I

would probably not loose any weight with such meds but I was determined, I

went for 3 weeks and went home to my husband crying every week with not a

bit lost. He told me I wasn't to go again, it wasn't helping and I needed

to wait til I was off the pred before I gave it a short again. I never put

a foot wrong with the food plan, so all I did was prove to them they were

right. While on the meds I would not loose weight and the stress levels

were too high when I was trying (while on the pred) so I figure I will

wait.

SueB.

----------

> From: <mahutton@...>

> onelist

> Subject: [ ] RE: Long-term outlook/work

> Date: Friday, 20 August 1999 14:03

>

> From: " " <mahutton@...>

>

> Thanks to all of you who have responded so far to give me an idea of what

> you've faced longer-term with AIH, especially as to work issues. It's

been

> a great help. I would still like to hear from others, too. And, here's

> another question for you all: Is the weight gain from prednisone

> " inevitable " ? Does it " just happen " regardless of what you try to avoid

it,

> or can it be controlled with diet and exercise (assuming one can get

enough

> exercise)? How long were you on the prednisone before the weight gain

came

> on? Have some of you not gained weight? Just wondering . . .

>

> [ ] Digest Number 268

>

>

>

> ---------------------------

[Guest guest]

Hi ....

I'm Tyler's mom..he is 16 and has AIH and PSC both diagnosed in April...He

also has Crohns Disease and Rhuematiod Arthritis since he was 10...As far as

the AIH I see that he just tires easily...He does work but he slao sleeps

alot...Other kids his age also work but then also hang out,go to movies

etc..he chooses to come hom and sleep....During the school year he will come

home each day and sleep about 2 hours then get up to homework and go to bed

WILLINGLY at 9...He also does school marching band and jazz band and he does

push himself...But this is his life and he has to learn to do as much as he

can when he feels he can and take it easy when he needs to...

As far as the prednisone....You gain weight...not much you can do about it

but I think if you are on a healthy diet then you will at least loose it a

little quicker when the dosage is lowered...Lets face it a healthy diet never

hurt anyone...You will get what they call the " moon face " and gain some

weight...dependng on how high your dosage and for how long...Tyler weighed

130 when he was 12 and was only about 4' 8 " ...But now he is 16 and weighs

abpit 118 and is over 5'1 " He's very happy with himself....The upside of the

pred is that it really does a good job ofr a lot of people...Both my boys

have had to been on it for extended time... (now 21) has been on and

off since he was 3 yrs old. He has Ulcerative Colitis...He also gain lots of

weight but he also has been in remmission several times...At 21 he is about

5'11 " and weighs about 160...Hasn't to had to be on pred for 3 years...KNOCK

ON WOOD...

You may also experience mood swings...but you learn to deal...Just don't be

to hard on yourself...

We saw the changes in the boys faces but they were still our boys and it

doesn't really hit until you look back at pictures...Who are those boys...But

at the time I still saw Tyler and ...The people around you who count

will not really notice the change...not as much as you will....But you will

get better...and thats a PLUS...

Hope this has helped you....I asked both the boys if they needed to go back

on the pred would they and both said NO but then said YES if there was

nothing else around to make them feel better....Thats an honest answer...I

don't think it helps when people only tell you what they think you want to

hear...

Almost everyone here has been on Pred at one time or another...its just part

of the deal...

Remember its YOU (from inside) that will shine thru.... It makes everyone

feel good...

Luanne Ty's mom

[Guest guest]

Dear ,

In a health person while eating, the stomach sends a signal to the brain

saying

" Hay, I am full. Stop eating " I read somewhere that Prednisone shorts out the

communication line to brain. So the brain does not get the message and the

person keeps

eating beyond the amount they

need. Hence the weight gain. Monitor the AMOUNT and eat plenty of raw

fruits and

vegies every day. Exercise! Drink plenty of water---etc.

Regards, Albert

At 21:03 19/08/99 -0700, you wrote:

>From: " " <mahutton@...>

>

>Thanks to all of you who have responded so far to give me an idea of what

>you've faced longer-term with AIH, especially as to work issues. It's been

>a great help. I would still like to hear from others, too. And, here's

>another question for you all: Is the weight gain from prednisone

> " inevitable " ? Does it " just happen " regardless of what you try to avoid it,

>or can it be controlled with diet and exercise (assuming one can get enough

>exercise)? How long were you on the prednisone before the weight gain came

>on? Have some of you not gained weight? Just wondering . . .

>

> [ ] Digest Number 268

>

>

>

>---------------------------