Working

[Guest guest]

Re: [ ] working

>From: AGo2864215@...

>

>Elena,

>I had a really hard time with my first pregnancy, when i was 19. I lost

>somewhere around 50 pounds while i was pregnant. After I delivered I was

only

>around 100 pounds. I continued to lose weight. Dr's finally started

treating

>me for ulcerative colitis with predisone and some other drug. I never had

>another problem, got off all medicines, and even had another child in

1985.

>My dr now seems to think I had AIH that was in remission from 1984-1997.

Who

>knows! My fatigue doesn't hit me until I get home in the evenings. My day

>starts at 5am and i do fine as long as i stay busy, but as soon as i start

>to slow down which is around 5pm i get really tired and just lay around on

>the couch and watch tv, and eventually go to sleep for a couple of hours.

My

>kids think I use them as slaves....because of all the cleaning i require

them

>to do. I don't feel like doing anything when I get home.

>

>My Dr told me to go and see a ob-gyn because of the sweats I keep having.

He

>said it is entirely possible that the medicines I am taking may be bringing

>on early menopause. Have you ever heard of this? Or any one for that

matter?

>

>

>My enzymes have been elevated for about the last 8 months with no

>explanation. This is why I was put back on predisone.

>

>Hope you are doing well!

>

>Anita

>Mansfield, Tx

>

Dear Anita,

If you can go from 5AM to 5PM and not slow down, I think you are doing

great. When I was well and young I don't think I could go that long without

absolutely crapping out. Keep doing whatever you are doing. I get " sweats "

also but I think mine are from too low a dose of estrogen. (I am 62 yrs. old

and had a hysterectomy when I was 40). Was in great health until 1997 when

all hell broke loose. I probably had some " episodes " when I was younger and

they were not recognised as AIH). I will be calling my Gyn Dr. to discuss

the " hot flashes " . I took Premarin (estrogen) for 20 yrs., but since being

diagnosed with AIH, he decided I should be on the " patch " instead of a pill.

I don't think the patch is as strong as the pill was.

Elaine

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

> " Congratulations to 'Voice-Diary,' our latest ONElist of the Week.

>

>Visit our homepage and share with us how ONElist is changing YOUR life!

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

>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

>

[Guest guest]

Hi ,

Just got back from San Diego and the number of messages is intimidating, so

if I say something that you've already been told 20 times, forgive me.

Had to comment on your friends who has been on Prednisone for years but has

no weight problems. There are so many factors that have to be considered

when doing comparisons. How many years was your friend taking pred and

what was the dosage? If it wasn't high for a prolonged period, or if she

never did take a high dosage, she might not have shown the effects. Since

I've only been taking the stuff since early 1998, I only have limited

experience. However, I have gone from 40 mgs. down to zero and back up to

10 mgs., now weaning my way off again and back down to 6 mgs.

First time I was withdrawn, it was in increments of 1 mg. every 2 weeks,

starting when I was taking 20 mgs. By the time I was down to 10 mgs., I

didn't see any physical difference except the moon face and hump back had

disappeared. My weight stayed the same but I was having problems with

fluid retention. On the very day I started 10 mgs., I woke up with giant

hives all over my body and my Hepatologist referred to it as a severe

immune system flareup. The Dermatologist wanted to put me back on 20 mgs.

daily but the Hepatologist said I should only raise it to 15 mgs., and

immediately start decreasing at 1 mg. per week instead of every 2 weeks.

I went one month not taking pred at all and by the end of the month the

joint and muscle pain, besides fatigue, was so bad I could barely get

around. Also, my feet and ankles ballooned. At that point (my doctor was

out for a few weeks because there was a new baby in the family) my

Rheumatologist put me back on 10 mgs. daily. It took only 3 days before

the pain was nearly gone but the edema continued until my doctor's

associate doubled my diuretics. During the first week on doubled diuretics

I lost 8 lbs. and it was great - no moon face or hump back and I could wear

clothes that hadn't fit me for almost a year.

However, gradually the pounds have been creeping back and I've regained

about 4 lbs. and have a hint of a moon face and puffiness at the back of my

neck again. I expect them to disappear as I decrease the pred again, but

almost inevitably, despite taking way too many diuretics, my feet and

ankles are starting to get puffy again.

My conclusion: Pred caused the moon face and edema (we all know that) but

it also suppressed whatever causes the edema. It's important to consider

which is more medically dangerous - a fat face and a hump back or whatever

condition makes feet and ankles swell.

Another conclusion I've reached is that the negative effects of pred don't

happen overnight but the positive effects of withdrawal don't happen

quickly either.

Your internist might be a little optimistic about how much better you'll

feel after you start taking meds. I was sick as a dog for the first couple

of months and gradually recovered to about 50% of normal (the way I was

before I was taking the meds) but I didn't start to really feel good until

I got off the stuff entirely for a month then started taking 10 mgs. daily.

That respite period has lasted though I have more aches and pains now that

I'm down to 6 mgs. Also, I get tired more quickly.

The drug just doesn't seem to have a consistent effect so that some people

get along with it well and others can barely tolerate it. My doctors also

tend to make positive statements as though they are citing fact not

speculation, but I think they're whistling in the dark. When I was taking

40 then 30 mgs. of pred, incidentally, the fatigue was worse than it's

ever been. Only at the lower doses did I start to get my energy back.

I gained about 37 lbs. in 6 months and I had a bout with facial hair but it

didn't last long. One day it was there and then a couple of weeks later it

was gone, and no one but me noticed it anyhow. It was a dark downy fuzz

along my jaw line. I drink quite a bit of water but haven't seen

that it does much except add to the aggravation that the diuretics are

already causing. I never thought I'd become so intimately acquainted with

our bathroom.

You're young and determined and you are approaching this the right way.

Listen to everybody and consider most of what you're told but most of all,

you have to listen to your doctor and to your body. We can offer anecdotes

and personal experience but each of us handles this differently and you may

have no problems at all with the meds. If you do have some unexpected

reactions, give them a chance so you can see if they subside after you're

basically stabilized.

Got to go. I don't think I'll be up all night tonight!

Take care,

Geri

[Guest guest]

Elaine,

There's hardly a day that I don't miss working. Realistically, though, I

don't think that I could handle it. I just don't have the stamina nor do I

have the patience. I told my husband today that I thought I'd start looking

for part-time work and maybe I'd be lucky enough to find a job that would

let me keep the hours of my choice and only work when I felt like it, while

meantime committing to not putting me under stress by telling me what to

do. Good thing I also don't have the energy to look for work because I

don't think that my dream job is waiting around the corner.

Seriously, the fatigue is so unpredictable and so severe when it's there, I

don't see how any of those with AIH who are still working can do it. It

can't be helping them physically, but we have to survive somehow.

Take care,

Geri

[Guest guest]

Anita,

My doctors also think I've had AIH for many years. Probably since around

1979. Until last year, I've always worked too, and except for the last

year before I was diagnosed, I never lacked energy or ability to do my

sometimes complex and stressful job. (But not nearly as stressful as yours

must be!) I've thought about it, and I'm actually grateful I didn't know

that I had a serious medical conditon for all those years. I suspected

something was wrong and my doctors, to be fair, seemed to try to figure out

what was happening, but I took each incident separately and never tied

things together as one problem. I think of the things I've done and the

life I've lived these past 20 years and consider how different it might

have been if I'd known...

Take care,

Geri

[Guest guest]

Geri,

Glad to see you had a safe return to us. Missed your imput.

Great news. Saw my specialist today and she tells me I am officially in

remission. Question to you Geri because I know you are also in remission

and dropping on the dosage of pred. With all the good things happening like

all the numbers coming down (ever so gradually) and the decrease in

medication I know the ultimate goal is to be free of the pred. Do the every

day symptoms ever go away. The fatigue, pain and all the ones we have

previously discussed. I meant to ask my doc but with the good news

everything else just went out the window. She has readjusted the dosage of

the drugs because of the severe affects of withdrawal that I encounted, but

is still persevering with dropping the levels. The cyclosporin is being

maintained at 75mg in the morning and at night. The latest side affect of

this wonder drug is that is bringing out all the sun cancers on my body. I

have always been susceptible to skin cancers but this drug (according to my

doc) brings them out severely. Next step to see a skin specialist. But the

trough levels are not what she wanted them to be so I have to have them

checked in a week, if they are still low she wants to increase the meds.,

only the cyclosporin though.

All in all it was good news. (I think). Does anyone know the statistics on

those in remission having the disease flare up again.

Hope you are well.

Sue B.

----------

> From: Geri Spang <spangs@...>

> onelist

> Subject: Re: [ ] Working

> Date: Friday, 4 June 1999 19:40

>

> From: Geri Spang <spangs@...>

>

> Elaine,

> There's hardly a day that I don't miss working. Realistically, though, I

> don't think that I could handle it. I just don't have the stamina nor do

I

> have the patience. I told my husband today that I thought I'd start

looking

> for part-time work and maybe I'd be lucky enough to find a job that would

> let me keep the hours of my choice and only work when I felt like it,

while

> meantime committing to not putting me under stress by telling me what to

> do. Good thing I also don't have the energy to look for work because I

> don't think that my dream job is waiting around the corner.

>

> Seriously, the fatigue is so unpredictable and so severe when it's there,

I

> don't see how any of those with AIH who are still working can do it. It

> can't be helping them physically, but we have to survive somehow.

> Take care,

> Geri

>

>

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

> Did you know each week we feature a ONElist story?

>

> How has ONElist changed your life? Please share your story.

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

> Please support the American Liver Foundation!

>

> 1.) To subscribe send e-mail to -subscribeonelist

> 2.) To UNsubscribe send to -unsubscribeonelist

> 3.) Digest e-mail format send to -digestonelist

> 4.) Normal e-mail format send to -normalonelist

[Guest guest]

Sue,

Congratulations for being inducted into the RC (Remission Club). Until I

was told that I was in remission, I thought it rarely if ever happens and

it turns out that it isn't that terribly unusual. Hurrah!

I wish I could say that the everyday symptoms will go away. If you have a

problem with adrenal insufficiency because of withdrawal from Prednisone,

I've been told that it can take weeks, months, years or maybe forever for

your natural adrenal system to kick in. Meantime, you have the ongoing

aches, pains and fatigue.

From what you've described, you've had a very similar reaction to

withdrawal that I had last time. By the time I stopped taking pred I had

so much pain I couldn't bend my knees. They wouldn't support me and the

pain of just using my legs to get up from a chair was terrible. It was

like having the worst flu I''ve ever had on the same day that someone threw

me out of a moving car or off a rooftop. Pain all over, day and night.

However, and this is the bittersweet good news, when I was told to go back

on 10 mgs. of prednisone because of the pain, within 3 days I felt

better than I'd felt in more than a year. I felt GREAT! My Hepatologist,

however, wants me to try to stop taking Prednisone altogether and he

doesn't consider non-life threatening pain enough justification to keep

taking the stuff, considering the far more serious side effects it can cause.

So, I started the taper routine again. I'm down to 6 mgs. now and my

stomach and side hurt, my legs are throbbing, I'm so tired I just want to

lie down and not do anything, but at least I know why it's happening. I

hope that I can get beyond this and maybe even fairly soon. If it becomes

too intolerable, I'll go back on Prednisone.

I think that you're in almost exactly the same situation I'm in. However,

you very well might be one of the lucky people and your own system will

start working without a long delay. I suspect it's entirely unpredictable

and there's no way a doctor can tell you how long this pain will last. I

see a Rhematologist in 10 days and I hope that he can offer some solutions.

Meantime, Vicoden keeps me semi-functional. Are you taking anything for

pain? If not, it might be a good idea to ask your doctor if he can

prescribe something to help you get through this.

I continue to take Imuran and will always take it. It also can increase

skin cancer risk, same as cyclosporin. I don't spend much time in the sun

and never have, so I don't have to worry about developing skin cancers.

I don't know what the remission statistics are but I've been told over and

over that I could relapse in weeks, months, years or maybe never. I'm

going for " never " . My doctors tell me that they think the remission will

hold and I hope they're right. Actually, what they say is that I

" probably " will never have to have a transplant after all. But, they kept

me on the list. I got to thinking about that and wondered if they really

meant (but didn't say) that by the time I get sick enough again to need a

transplant I'll be too old to qualify. From what I've heard, the disease

will progress. The objective is to slow it down so that it takes years for

that to happen.

Take care,

Geri

[Guest guest]

Geri,

Thanks for the imput into what to look forward to when withdrawing from

this wonder drug.

My doc (local) wanted me to go back up to the higher dose because of the

withdrawal problems, but I decided to try and stick it out til I saw my

specialist. I'm glad I did, it got easier over the following week. Not good

but better. I told this to my specialist and she agreed. She wants me to

keep persevering with the tapering down.

A couple of good points that came from the latest blood tests my AST is

normal and even my sugars were within normal limits. That is a first, since

I was started on pred. Isn't that just great. I must admit too I am

sleeping better. I was one of these people that sat up all night not being

able to sleep on the pred. Now I am able to get a few good hours sleep,

when I can get into a comfortable position.

Unlike some of the people here, I have suffered pain from the very

beginning of this disease, my doctor had been at me for months and months

to take pain relief, but I didn't want to go that road, I didn't want to

get " addicted " to painkillers. Both my doctors finally got their message

across that " quality " of life is extremely important. And because I do no

have an addictive nature I wouldn't have any trouble with this. I finally

gave in and I can tell you that it is much easier to get through each day

at a time now. We tried most of the mid strength ones, but morphine was the

only one that gave me any sort of relief. I now take 20mg morning and

night. I really hate taking them, but the relief is a blessing.

About the sun cancers. My doctor told me that even the light that comes

through the kitchen window can worsen the condition from the cyclosporin.

She advises me to wear a sunscreen and to put it on immediately I get up in

the morning. I too never intentionally go into the sun.

Hope you are well.

SueB.

----------

> From: Geri Spang <spangs@...>

> onelist

> Subject: Re: [ ] Working

> Date: Saturday, 5 June 1999 20:25

>

> From: Geri Spang <spangs@...>

>

> Sue,

> Congratulations for being inducted into the RC (Remission Club). Until I

> was told that I was in remission, I thought it rarely if ever happens and

> it turns out that it isn't that terribly unusual. Hurrah!

>

> I wish I could say that the everyday symptoms will go away. If you have

a

> problem with adrenal insufficiency because of withdrawal from Prednisone,

> I've been told that it can take weeks, months, years or maybe forever for

> your natural adrenal system to kick in. Meantime, you have the ongoing

> aches, pains and fatigue.

>

> >From what you've described, you've had a very similar reaction to

> withdrawal that I had last time. By the time I stopped taking pred I had

> so much pain I couldn't bend my knees. They wouldn't support me and the

> pain of just using my legs to get up from a chair was terrible. It was

> like having the worst flu I''ve ever had on the same day that someone

threw

> me out of a moving car or off a rooftop. Pain all over, day and night.

>

> However, and this is the bittersweet good news, when I was told to go

back

> on 10 mgs. of prednisone because of the pain, within 3 days I felt

> better than I'd felt in more than a year. I felt GREAT! My

Hepatologist,

> however, wants me to try to stop taking Prednisone altogether and he

> doesn't consider non-life threatening pain enough justification to keep

> taking the stuff, considering the far more serious side effects it can

cause.

>

> So, I started the taper routine again. I'm down to 6 mgs. now and my

> stomach and side hurt, my legs are throbbing, I'm so tired I just want to

> lie down and not do anything, but at least I know why it's happening. I

> hope that I can get beyond this and maybe even fairly soon. If it

becomes

> too intolerable, I'll go back on Prednisone.

>

> I think that you're in almost exactly the same situation I'm in.

However,

> you very well might be one of the lucky people and your own system will

> start working without a long delay. I suspect it's entirely

unpredictable

> and there's no way a doctor can tell you how long this pain will last. I

> see a Rhematologist in 10 days and I hope that he can offer some

solutions.

> Meantime, Vicoden keeps me semi-functional. Are you taking anything for

> pain? If not, it might be a good idea to ask your doctor if he can

> prescribe something to help you get through this.

>

> I continue to take Imuran and will always take it. It also can increase

> skin cancer risk, same as cyclosporin. I don't spend much time in the

sun

> and never have, so I don't have to worry about developing skin cancers.

>

> I don't know what the remission statistics are but I've been told over

and

> over that I could relapse in weeks, months, years or maybe never. I'm

> going for " never " . My doctors tell me that they think the remission will

> hold and I hope they're right. Actually, what they say is that I

> " probably " will never have to have a transplant after all. But, they

kept

> me on the list. I got to thinking about that and wondered if they really

> meant (but didn't say) that by the time I get sick enough again to need a

> transplant I'll be too old to qualify. From what I've heard, the disease

> will progress. The objective is to slow it down so that it takes years

for

> that to happen.

>

> Take care,

> Geri

>

>

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

> Got an opinion?

>

> Make it count! Sign up for the ONElist Weekly Survey now.

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

> Please support the American Liver Foundation!

>

> 1.) To subscribe send e-mail to -subscribeonelist

> 2.) To UNsubscribe send to -unsubscribeonelist

> 3.) Digest e-mail format send to -digestonelist

> 4.) Normal e-mail format send to -normalonelist

[Guest guest]

Hi Sue,

I'm hanging in there with the pred reduction though it's tempting to just

go back on it.

One thing that's happening to me now is that instead of staying wide awake

all night, I get suddenly overwhelmingly tired and MUST go to bed. It's

happening right now and I don't think anyone but others who have gone

through what all of us have with our meds can understand. This total and

sudden sleepiness is partly why I don't post so often. I used to do this

after I'd finished with everything else for the evening. Now, when I'm

" done " I'm REALLY done!

I've never taken much pain medication because I've never been bothered much

by pain. In fact, the day I had my hysterectomy I asked them to remove the

morphine drip IV because the morphine was making me deathly ill. Even

after I was home from the hospital, I only took the pain pills they gave me

two or three time. Now, though, I couldn't function without something.

It's one thing to live with occasional pain but when it never stops, it

wears you down. My Rheumatologist doesn't think that the average person

who suffers from chronic pain is a risk for addiction. I agree. Even now,

I don't think much about taking something for pain until I find that I'm

really aching then I realize I haven't taken anything all day to make it

easier.

That's good news that you're doing so well. Keep it up. Even if your labs

have some ups and downs, as long as they don't just go up, you're probably

doing very well.

I've heard that some drugs can increase skin cancer risk. Scripps arranged

for me to meet a woman who had had a liver transplant and she told me that

she had to be checked constantly for skin cancer. She indicated the

vulnerability was caused by the anti-rejection drugs she was taking. I'm

rarely in the sun for more than a few minutes at a time, partly because it

gets so hot here and I get nauseous when I'm too warm (always have been

that way.) But, I assume that there would be a general increased risk.

Take care,

Geri (fading fast!)

[Guest guest]

Question: How many of our group work?

I work too. Full-time. Admittedly I have " mild " AIH, but I have a

high-stress job and two kids under five. I think there's huge variability

in terms of what different people's experiences are depending on how

advanced the AIH is.

Libby

[Guest guest]

I don't work, now way possible. Lynn in Wa

Lib Dale wrote:

> From: " Lib Dale " <libdale@...>

>

> Question: How many of our group work?

>

> I work too. Full-time. Admittedly I have " mild " AIH, but I have a

> high-stress job and two kids under five. I think there's huge variability

> in terms of what different people's experiences are depending on how

> advanced the AIH is.

>

> Libby

>

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

[Guest guest]

Liv,

I don't work, but I'm seriously considering looking for at least part-time

work, which isn't so easy to find. I haven't worked since just before I

was diagnosed and I was the world's worst employee, last time I had a job.

Sick, weary, irritable and overly emotional.

Geri

[Guest guest]

l left my job in Feb. I tried working after I was on meds I lasted about

10 months. It got worse until at the end I was so dizzy and tired I

could not do it anymorre. I feel much better now and my numbers are

normal Dr. is reducing Pred. I am down to 7.5 I hpe they stay down.

Pa.

[Guest guest]

I work full time unfortunately plus I have a 100 mile round trip communte.

=

I almost always fall asleep by 7 or 7:30 P.M. Lovely quality of life. LOL!

I am a programmer/analyst so most of the time I spend sitting at my desk.

But it is mentally stressful and I am also emotionally strssed out about all

of it.

Dianne A.

[Guest guest]

HI:

I work 4 hours a day at night and this week I only have worked about 12 hours

so far due to getting sick at work last night and going into ER. Bad bad

pains in the liver and back area like some one was stabbing me with a knife.

I had a lady doctor who was really nice. She did say that she had never

heard of AIH but was really interesting in finding out about the pain. I

felt I was going to vomit also, so she put a shot in my butt to make it stop.

I have good liver test numbers but my urine had bacteria in it and she was

having it cultured today but I didn't hear from her. Will call Monday to my

Doctor and see if he heard. She also said since this has happened two times

in two weeks with mild ones in between, that she said I better got some

testing done to find out what it is. She was going to also let me doctor

know what she thinks it could be. A stone blocking a bile duct someplace.

She said even with the GB gone it can happen.

Well off to answer and read the rest of my mail.

Sue AIH

Wisconsin

[Guest guest]

:

That'swhat my doctor thinks. I will probably not be working at all down the

road. Three relapes were hard on me. The last one especially. Time will

tell. If I do get to that point, I will stay home and keep the house clean

and drive my daughter around until she gets her license.

Sue AIH

Wisconsin

[Guest guest]

Dianna:

How do you do it. Some days I hate even getting into the car to drive to

work. I live about 1 1/2 from work. I also get alot of stress at work so

that is why I get to work at night. My bosses (the three brothers) that own

the company have been great. I guess you can say I have been lucky about

working. I haven't worked full times since 10/97 and they are working on

getting me total disability. If they suggest me to go on the insurance

fulltime I guess I would probably do it. But I really like me job.

Sue AIH

Wisconsin

[Guest guest]

Barbara Ann:

School now that is an idea. I could learn everything I wanted to study.

Computers is one thing I would like the ins and outs of.

Sue AIH

Wisconsin

[Guest guest]

Barbara Ann, if it is okay that I ask, how do you feel after your tx? Was

it worth the surgery and how long does it take to recooperate from it. This

has been driving me nuts. I can't make up my mind if I want to go thru

another surgery, so would like to know this stuff. thanks Lynn in Wa

barbara ann wrote:

> From: barbara ann <barbara99ann@...>

>

> Sue,

> I worked until Nov 19, 1994 and had my transplant Dec

> 22, 1994. I was on pred for just about 1 month before

> I stopped working - the pred didn't work for me.

> I was fortunate that the company I worked for had

> offered an early retirement plan which I had signed up

> for before I got sick. I had signed a statement that

> I would work until Sep 1995, so I was theoretically

> still on payroll at the time of my transplant and

> beyond, until Sep 1995. I collected all my sick leave

> and vacation pay which made things very bearable

> financially. Part of the deal of the early retirement

> was that I keep my free health insurance coverage

> until I'm 65 or on Medicare. I still have other

> company benefits as well.

> After the tx I decided to go back to school rather

> than work. It's much more fun and very satisfying.

> Barbara Ann

> AIH Transplant Recipient

>

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

[Guest guest]

Sue, I have been having those exact pains, thought it was gas or something.

They

are so bad feels like it is coming through my back, like a knife, goes up my

neck

and makes my neck ache too. Lasts for hours, this has been going on and off for

about a month. I have never had gas pains. When my gall bladder was bad I

thought those pains were gas too! So we never went to the Dr. when we were

kids,

so wasn't the first thing I thought of. Took me 3 years to finally make it to

the Dr. with a terrible attack and I had my gallbladder out. Maybe I should go

see what these pains are. I have been having liver pain too, but didn't put the

two together. More to think about...Lynn in Wa

Roselle50@... wrote:

> From: Roselle50@...

>

> HI:

>

> I work 4 hours a day at night and this week I only have worked about 12 hours

> so far due to getting sick at work last night and going into ER. Bad bad

> pains in the liver and back area like some one was stabbing me with a knife.

> I had a lady doctor who was really nice. She did say that she had never

> heard of AIH but was really interesting in finding out about the pain. I

> felt I was going to vomit also, so she put a shot in my butt to make it stop.

>

>

> I have good liver test numbers but my urine had bacteria in it and she was

> having it cultured today but I didn't hear from her. Will call Monday to my

> Doctor and see if he heard. She also said since this has happened two times

> in two weeks with mild ones in between, that she said I better got some

> testing done to find out what it is. She was going to also let me doctor

> know what she thinks it could be. A stone blocking a bile duct someplace.

> She said even with the GB gone it can happen.

>

> Well off to answer and read the rest of my mail.

>

> Sue AIH

> Wisconsin

>

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

[Guest guest]

Janie, you asked about working. Well, I decided to just give that up

altogether a few years ago. I am sure that everyone with PA can tell a

" good " story about their experiences with working and PA and employers

and what-not. I went from working as a fulltime advertising

representative working as much as 60 hours a week, to working part time

in a ladies retail clothing store part-time. And I mean part time, at

one or two shifts a week. The first chance the store had they laid me

off. I know it was because of the problems that the PA caused me and I

never could get anyone to admit that was the reason. I was told over

and over again by the manager and the regional manager how wonderful a

worker I was and how I brought so much to the company and all that other

mumbo-jumbo. But when they saw a chance to get rid of me, then whammo,

I was out the door. So, now I stay at home, do what I want when I want

and go to university part time. Fortunately, our university has

excellent policies on assisting people such as myself. I am permitted

extra time to write exams and I am able to defer my exams if I am having

difficulty on an exam day. Also, if I need someone to take notes for me

in class, they can provide such a person. I am very fortuntate to be

able to give up work, and I remind myself of that frequently. But I

miss working and having my own money. Although my husband sincerely

believes that I am an equal contributor and he treats me thusly, there

are still times that I wish I could have my own paycheque. I feel funny

buying gifts for him out of his own money..sorry, this is getting to

me. And now I am crying...sorry, people.

Janet

[Guest guest]

I was diagnosed in April of this year. I was put on 25 mg of prednisone

right away and the Mtx when the blood tests came back.

I take my Mtx on Monday and expected to feel crappy on Tuesday. But on

Thursday of the first week, I was still sick. So I took a 3 month FMLA --

medical

leave.

When it was up, I went back to work and the first couple of weeks, I was

moving pretty slowly. Gradually, I got back the energy and now am moving like I

was before my flare. I actually work two part time jobs -- one I love and

have kept doing, but just cutting down on activity. The other one is the one

I'm talking about.

So even if you can't work today, it doesn't mean that you have to stop

working. But you may need to try a leave and see how it goes.

dd

**************Psssst...Have you heard the news? There's a new fashion blog,

plus the latest fall trends and hair styles at StyleList.com.

(http://www.stylelist.com/trends?ncid=aolsty00050000000014)

[Guest guest]

Sharon,

What a wonderful, uplifting post. I hope the new job and meds are

both a very good experience for you.

Shirley

>

> Hi ,

> I'm a 30 year old Chef & I've had RA for nearly 4 years now. It

first

> started 2 weeks after I had started a new job. It was originally

> thought to be a viral arthritis, like Ross River or Barmah forest.

By

> the 3rd month I was in A LOT of pain. I was living in Single

persons

> quarters on site & had to sleep at the desk because I couldn't lie

down

> on my back or shoulders. I was getting about 2 hours of sleep a

night.

> That increased to 4 when I saw my then GP (in tears!) & he

prescribed

> sleeping tablets.

>

> By the 4th month I was scooting to the toilet(first thing

in

> the morning) on my bottom because my feet & knees where so swollen

& it

> took my 4-5 hrs to be ready for work.

>

> But work I did. Why?, I think for several reasons. I

am

> severely hearing impaired & I'm use to adversity. I've been told

all my

> life that I will be packing shelves or weaving baskets yet I've

become

> a chef. I've grown up in a disadvantaged enviroment as well, rural

> Australia, & my father was killed in a vehicle accident when I was

2

> yrs old. I guess that has developed a bit of a stubborn & maybe

> sligthly rebellious streak!

>

> I always take each day as it comes, even when I was well. I take

> enjoyment out of little things, especially nature & my enviroment.

I

> think attitude plays a huge part in being able to continue work. I

have

> learnt a lot of new ways to do things & I plan my days so that

each

> moment is used effiecently (spelling?).

>

> With my first flare I was in denial. The Rhuemy I saw

prescribed

> Sulfasalazinne but I didn't take it. He didn't tell me what it was

for

> & when i read the side effects & decided that because I was

getting

> better (at that point) there was no need.

>

> I enjoyed 6 months of remission from RA which lasted until

October

> last year. A knee I " twisted " at work turned out to be RA rearing

its

> ugly head. After being " treated " for the " knee injury " for 6

months it

> (the knee) decided to clear for a week & then the other knee

flared,

> quickly followed by my wrists. I went straight to my " Quack " &

demanded

> a referral to a Rhuemy who turned out to be that same one as

before.

>

> 3 months later I had my first appointment & I'm seeing

him

> this coming friday to follow up on my new drug regime

(Sulfasalazine-

> again, prednisone-5mg & Diclofenac- which is what my GP treated

my " knee

> injury with after the Brufen didn't work)

>

> I recently resigned from my job catering for the mines. No more

> graveard shifts, 10 hour days & 2 weeks away from home at a time.

I've

> started a new job in my home town which has a max. of 40 hrs, 5

days a

> week. I happier & the Sulfa is really starting to kick in now so

I'm

> feeling really good.

>

> I have become a bit more selfish. I know that in order to be

able to

> give I need to take a little more " me " time. I say 'No' more

now

>

> The type of work you do is a factor too. I know that I need to

start

> opening new doors for when I am no longer physically capable of

being a

> Chef fulltime. I've started looking at study towards other career

paths.

>

> It's also important, I think, to remain as pyhsical as

possible. " Use

> it or loss it " . I lost a lot of condition last flare so I ride

when I

> can't walk & lift weights (especially when I can't ride or walk).

>

> I'm ranting a bit here, lol.

>

> I hope this helps some

>

> Sharon of OZ

[Guest guest]

>

> I have a question. I was wondering if I will still get the full effects of

this program while still working a full time job and such. I'm sure others are

as well. However, I was wondering if others are in the same boat. Thanks for any

help.

>

>

> -Mike

>

@@ Hi Mike,

Why would you not benefit?

Of course you will get the full effects of the program while working a full time

job. Providing you are following it correctly.

Best in Health,

Ed

group moderator

[Guest guest]

Thanks for the response. I actually work in an office job. My problem is the

opposite. I wish I had MORE of an opportunity to be physically active throughout

the work day. There is a lot of stress from the job itself just from the actual

work. However, I'm trying to limit it and not allow it to affect me anymore as I

know my health is more important.

-Mike

> >

> > I have a question. I was wondering if I will still get the full effects of

this program while still working a full time job and such. I'm sure others are

as well. However, I was wondering if others are in the same boat. Thanks for any

help.

> >

> >

> > -Mike

> >

>

[Guest guest]

Bee and others,

Another very big question I had which I forgot to include in this original post

was...what do people here who have full time jobs do for lunch everyday? I've

been going through the menu options on Bee's site. There are a lot of great

options there with recipes. However, what do you do when you obviously can't

prepare your lunch that same day? Do you eat salads everyday? Do you just

prepare them the night before and refrigerate them over night? I'm afraid of

losing the nutritional value of the food. Would you bring it to work in a glass

container...which doesn't really seem realistic. Thanks for any help.

-Mike

> >

> > Hi Mike,

> >

> > What kind of work do you do?

@@ Snip

- Unnecessary text edited out by moderator