Weight

[Guest guest]

Chollyfam,

My heart went out to you in your note. I am 38 and have also always been

quite trim. I am a dancer and so very aware of my body. The high doses of

prednisone that I was on did change my body. Like you said, it wasn't just

the additional weight, it was the texture and distribution. My breasts were

pure mush. I am fortunate now that as I'm reducing the prednisone, my body

is becoming slowly but surely somewhat normal. One thing that has helped me

is staying true to some type of exercise and using my body in a healthy way.

I gave up dance for a while partially because I didn't want to watch myself

in the dance mirrors anymore. I now take yoga and it is wonderful. It is

gentle, yet somewhat exerting. How much prednisone are you on right now and

are you on an immunosuppressant?

I also relate to the challenge of having energy for children. I have two

kids (a six year old and 3 year old). I really try to pace myself and I have

explained to my six year old that I need a nap everyday if he wants me to

feel okay to play in the evening. He does pretty well, for a high-energy

kindergartner, at respecting this. My husband and I wanted a third child but

even though my doctor thinks I might physically be able to handle the

pregnancy, I have to be realistic about how much energy I have and whether it

would make sense to have another child when I am already challenged. I want

to make sure I can support these two emotionally and physically through their

development. How old are you kids?

I wish I could say something that would make you feel better, just know that

I understand where you are coming from.

Warm Wishes, Roxanne

[Guest guest]

Hello

I asked my Doctor that lupus question the last time I saw him he said

some one with lupus well most likely not get AiH!!

but its more likely for some one to get lupus if the already have aih

even thow it's very very rare!!

[Guest guest]

,

Thanks for the input.

Tami

[Guest guest]

Roxanne,

Thanks a bunch. I really appreciate your response to me. I am down to 10 mg

of prednisone and 75 mg of imuran as well as 1600 mg of Vit e and actigal. I

expected the weight and moon face to get better as the prednisone was

reduced, but so far not much luck. You are definitely right about the

exercise. I gave up because I felt like I wasn't getting any results. Also

I am always so busy, but I know I need to take the time to do that for me. I

always feel better mentally when I am exercising. Please keep in touch!

[Guest guest]

Sue,

Many thanks. The depression can get to you and having support helps

tremendously!

Tami

[Guest guest]

Tracey,

Can you give me any info on Lupus? I have heard of it, but am fairly

unfamiliar with it. How can I tell if the symptoms are from the AIH or

Lupus?

Thanks!

Tami

[Guest guest]

On Tue, 4 May 1999 Chollyfam@... wrote:

>Question - I am now being tested for Lupus. Has anyone ever heard of having

>AIH and Lupus at the same time? My joints are aching terribly is that part

>of AIH or possibly from the Lupus? Thanks to you all. You are a blessing.

Yes. I am a moderator on a lupus list and there are people there with

multiple autoimmune diagnoses including AIH. I am in the process of

trying to get my docs to make a decision on what is causing my elevated

liver tests - whether it's AIH, fatty liver (which my rheum says it can't

be), or " just " lupus, and for them to do something about it, since they

refuse to treat the current flare I'm in until they do make a decision

about the liver.

FWIW, my current diagnoses are lupus/RA/fibromyalgia, although the RA and

the fibro are currently behaving themselves (knock on wood).

L. tlcarter@...

ville (near Knoxville), Tennessee, USA

" We are the music makers, and we are the dreamers of dreams. "

[Guest guest]

Chollyfam,

My worst fear from this disease, I think, was that I was alone, and no-one

really understood. Wrong!!!! As you say you have found out through this

group that YOU ARE NOT ALONE.!!! Each and every one knows just how you

feel, weight wise, pain wise and just getting through some days. Thank God

for this group, they will help you get through each day, be it one day at a

time it is still one day. They have got me through some tough times

already.

SueB.

----------

> From: Chollyfam@...

> onelist

> Subject: [ ] Weight

> Date: Wednesday, 5 May 1999 10:11

>

> From: Chollyfam@...

>

> Dorothy- Thanks for your warm welcome!

>

> Jan- Thanks so much. I am still figuring out how to do this. What is

the

> home page and the digest?

>

> I have been reading the letters you have all been writing about the

weight.

> I cannot tell you how good it has been. I have felt sooo alone for all

these

> years of battling with the disease. I am 31 and have been very thin all

my

> life. (96 lbs when I met my husband) Most of my friends are all thin and

> very attractive. I am dreaading summer and all of the beach trips and

pool

> parties. It is so hard for me to see them all in their bikinis, thin and

> beauatiful and I don't even want to put a bathing suit on. My friends

are

> all nice; they never say anything mean and are very encouraging, but I do

not

> give myself the same break. My whole body is just different. I have

seen

> beautiful large women who even look good in a bathing suit, but my body

is so

> mushy. I feel like the Stay Puff marshmellow man. My flesh bulges

around

> anything tight -- straps, shoes, elastic, etc. It has been very

depressing

> at times. I feel like a bad wife because I am longer as attractive as I

used

> to be and I am more irritable. I feel like I am a bad mom because my

temper

> is shorter and my joints ache and hurt so bad that I can't even play with

my

> kids like I used to, no horsey rides and such. I wonder what use I am

now.

> I am sure people with all kinds of illnesses must go through similar

> feelings, and I can mentally rationalize, but the emotions can be so

strong.

> Your encouragement is greatly appreciated. It is so nice to know that I

am

> not alone.

>

> Question - I am now being tested for Lupus. Has anyone ever heard of

having

> AIH and Lupus at the same time? My joints are aching terribly is that

part

> of AIH or possibly from the Lupus? Thanks to you all. You are a

blessing.

>

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

> Wanting to get back in touch with old friends?

>

> Reunite through a ONElist community.

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

> 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]

On Wed, 5 May 1999 Chollyfam@... wrote:

>Tracey,

>Can you give me any info on Lupus? I have heard of it, but am fairly

>unfamiliar with it. How can I tell if the symptoms are from the AIH or

>Lupus?

I can't help you with whether the symptoms are from AIH or lupus. My

best suggestion on that is to get a really good team of doctors (big

emphasis on the word " team " since they have to be willing to work

together). My current team consists of my internist, a rheumatologist,

an opthomologist, a GI doc who specilizes in liver disorders. I also have

a neurologist and a perinatologist who consult as needed. They are all

more than happy to work together on things, but it is time consuming since

they are not in the same office or even the same hospital and they must

comunicate through phone, voice mail, mail, etc.

Here are some links to follow up on lupus info:

http://www.lupus.org

Info for mailing lists - http://www.hamline.edu/lupus

http://www.acor.org/lupus

Chat info (which has been pretty slow since so many of us are ill):

http://comptech.vet.utk.edu/lupuschannel

L. tlcarter@...

ville (near Knoxville), Tennessee, USA

" We are the music makers, and we are the dreamers of dreams. "

[Guest guest]

Hi -

Lucky (?) for me, I've always been the " slim " one in our group of family

and friends so gaining weight only made it easier for everyone to identify

with me. I've got to say that a few people have gloated, like I've finally

gotten what I deserved.

It irritates me to have to limit my wardrobe to things that won't show the

puffiness I now have in my upper arms and I hate my lack of a waistline

more than anything. But, these are things I'm learning to live with.

Appearance might be harder for women to deal with. We spend our lives

being equated on how we look and that's facetious and unimportant, but it's

the way it is. When I was a little girl my mother used to tell me, " pretty

is as pretty does. " I hated it when she said that and I'd avoid looking in

the mirror so she wouldn't think I was trying to get away with looking

pretty instead of acting " pretty. " But the truth is, physical beauty is

such a subjective and fleeting thing. I want to be loved for who I am, not

for what I look like. So do all of us.

It sounds like you have a kind, nice group of friends. I know that you

don't want their pity but it would appear that they're giving you something

better: their understanding.

How long have you had AIH? Have you been taking prednisone for a long

time, and in high doses? When my pred was started on reduction I expected

to see weight losses immediately. It didn't happen that way, but in time I

did lose some weight. Not as much as I'd have liked to lose, of course.

The puffiness is caused by fluid retention. Are you taking diuretics?

They help but won't necessarily get rid of all of it. I'm taking large

amounts of diuretics and tolerating that well though my doctor isn't happy

about it. I do have cheekbones again and I can wear any of my shoes but

ascetis seems to be here to stay, so I'm stuck with a " big " stomach.

There are so many ups and downs that go with this disease and the

medications. It's discouraging, I know. Even knowing that so many of us

are going through it probably doesn't help.

About Lupus: I've been tested for it over and over, since years before I

was diagnosed with AIH. The tests are always negative, so I suspect that

there are some crossover symptoms. I've had major problems with joint pain

and swelling since years before AIH was identified. I've also had some

fierce and unusual rashes that no one could identify for cause. But, I do

NOT have Lupus. It's good that Rheumatologists continue to test for it,

but I almost think that I'd rather have AIH. Two of my friends are

seriously ill with systemic Lupus and their medical condition seems much

more complex than mine.

We all seem to suffer from joint pain and lately I've been wondering if it

might be related somehow to imbalances in our adrenal system since adrenal

function is controlled and affected by Prednisone, once we start taking the

drug. The only reason I wonder about that is because the joint pain

that's bothered me became considerably worse when I had a bout of adrenal

insufficiency after too-rapid withdrawal from corticosteroids. It's a very

distinct pain, mostly centralized in my knees and back. I wonder if

Prednisone might destabilize our adrenal function, and that would be

complicated by the fact that our natural adrenal function defers to

artifical functioning when we're taking Prednisone. I'm only speculating,

but there has to be an explanation for the joint pain. I haven't read

anything about that in the literature on Prednisone but it's something

that should be considered.

Take care,

Geri

[Guest guest]

Sorry, I didnt see the original posting on weight, but I thought I'd tell my

story about that. Before AIH I was a size 8 and Im 5'6 " so I wasn't real

thin to begin with, but when I got sick I went to a size 14. It was awful and

my self esteem was very very low. The past year I have been exercising a

lot. I have found that that is the only thing that will keep my weight down.

I'm down to a 10 and have pretty much accepted that for now. I don't know

if exercising is an option for y'all but it has helped me raise my self

esteem also.

[Guest guest]

<<The past year I have been exercising a lot. I have found that that is

the only thing that will keep my weight down. I'm down to a 10 and have

pretty much accepted that for now. I don't know if exercising is an option

for y'all but it has helped me raise my self esteem also. >>

Even if exercising doesn't melt off the pounds, I imagine it makes most

people feel better. I'm not sure, but doesn't exercise raise the

" endorphins " levels in our natural body chemistry? And, endorphins are

supposed to give us a feeling of well-being.

I know a number of people who walk as a form of exercise and they swear it's

done them considerable good. I'm guilty of not exercising, partly because I

have some other problems so exercise seems to make me feel worse, not

better. I worry that I could end up skinny and confined to a wheelchair

with broken bones! (Exaggerating.) I'd love to get rid of the weight in my

mid-section but it's mostly fluid. Last time I had the ascites relieved, I

lost so much weight during 5 days in the hospital my hip bones were sticking

out! And, I wore a size 8 before I started retaining fluid from liver

disease. Sadly, I think those days are gone forever.

Take care,

Geri

[Guest guest]

In a message dated 2/19/02 11:44:20 PM Pacific Standard Time, seajay192002@... writes:

Peggy ---- I know what you mean ----- I feel like

Michelin Man -- they used to use him to advertise

tyres i think ---al white and blown up.

Caroline, every time I look in a mirror I think of the Venus of Willendorf! (Actually, I almost never look in a mirror now.) You know the Venus of Willendorf, the Paleolithic fertility figure with no head, vestigial arms and legs, and enormous breasts, hips, and belly. I still think of myself as being flat-chested (which I preferred, for agility), so it's quite a shock to see that's far from the case. And, my face now matches the new body. I have found the new appearance useful in realizing that other people don't "match" their exteriors, either. I now find it easier to see who's underneath, to realize that all we humans are in costume throughout our adult lives.

Harper

[Guest guest]

Harper, nice healthy attitude (although I don't have the slightest idea who Venus of Wilendorf is!)

Patty

-----Original Message-----From: flatcat9@... [mailto:flatcat9@...]Sent: Wednesday, February 20, 2002 11:38 AM Subject: Re: [ ] WeightIn a message dated 2/19/02 11:44:20 PM Pacific Standard Time, seajay192002@... writes:

Peggy ---- I know what you mean ----- I feel like Michelin Man -- they used to use him to advertise tyres i think ---al white and blown up. Caroline, every time I look in a mirror I think of the Venus of Willendorf! (Actually, I almost never look in a mirror now.) You know the Venus of Willendorf, the Paleolithic fertility figure with no head, vestigial arms and legs, and enormous breasts, hips, and belly. I still think of myself as being flat-chested (which I preferred, for agility), so it's quite a shock to see that's far from the case. And, my face now matches the new body. I have found the new appearance useful in realizing that other people don't "match" their exteriors, either. I now find it easier to see who's underneath, to realize that all we humans are in costume throughout our adult lives. Harper

[Guest guest]

In a message dated 2/21/02 6:22:28 PM Pacific Standard Time, nneW5@... writes:

You do realize that all the females on prednisone would have been

considered very hot chicks during the Renaissance!! Just take a gander

at any painting by s...LOL...our timing is just off a bit!

nne

I wonder if the Willendorf Lady had Cushing's syndrome (which causes Prednisone-like features)? Nah, she was just well-fed and fertile.

Harper

[Guest guest]

You do realize that all the females on prednisone would have been

considered very hot chicks during the Renaissance!! Just take a gander

at any painting by s...LOL...our timing is just off a bit!

nne

> Harper, nice healthy attitude (although I don't have the slightest

idea who

> Venus of Wilendorf is!)

> Patty

> Re: [ ] Weight

>

>

> In a message dated 2/19/02 11:44:20 PM Pacific Standard Time,

> seajay192002@y... writes:

>

>

>

> Peggy ---- I know what you mean ----- I feel like

> Michelin Man -- they used to use him to advertise

> tyres i think ---al white and blown up.

>

>

> Caroline, every time I look in a mirror I think of the Venus of

> Willendorf! (Actually, I almost never look in a mirror now.) You

know the

> Venus of Willendorf, the Paleolithic fertility figure with no head,

> vestigial arms and legs, and enormous breasts, hips, and belly. I still

> think of myself as being flat-chested (which I preferred, for

agility), so

> it's quite a shock to see that's far from the case. And, my face now

> matches the new body. I have found the new appearance useful in

realizing

> that other people don't " match " their exteriors, either. I now find it

> easier to see who's underneath, to realize that all we humans are in

costume

> throughout our adult lives.

> Harper

>

>

[Guest guest]

Maybe I could make a living as anude artists

model!!!!!

Caroline

I did try and reply to this before but an incoming

e=nmail zapped it ---- or something so don.t know if

it worked.

--- flatcat9@... wrote:

> In a message dated 2/21/02 6:22:28 PM Pacific

> Standard Time,

> nneW5@... writes:

>

>

> > You do realize that all the females on prednisone

> would have been

> > considered very hot chicks during the

> Renaissance!! Just take a gander

> > at any painting by s...LOL...our timing is

> just off a bit!

> >

> >

>

> I wonder if the Willendorf Lady had Cushing's

> syndrome (which causes

> Prednisone-like features)? Nah, she was just

> well-fed and fertile.

> Harper

>

__________________________________________________

[Guest guest]

Debby, hang in there. I also took prednesone for 18 months and it took a while for the weight to start to come off but it finally is. I don't really deprive myself but do not eat as much as I used to and exercise every day. I had a lot to lose ( I was not heavy prior to prednesone) but am now almost to my goal weight. It is discouraging when you work so hard and don't see results. I did give up sugar and only eat something with sugar in it occasionally. You would be surprised how much sugar is in our food...just a thought that might work for you too.

Good luck!!

Bobbee

[Guest guest]

Thank you Bobbee…I am just so

frustrated. I stopped the prednisone in February and only lost 10 of the

40 I put on. It is totally frustrating! I am just going to stop

eating I think.

Debby

Re: [ ]

Weight

Debby, hang in

there. I also took prednesone for 18 months and it took a while for

the weight to start to come off but it finally is. I don't really deprive

myself but do not eat as much as I used to and exercise every day. I had

a lot to lose ( I was not heavy prior to prednesone) but am now almost to my

goal weight. It is discouraging when you work so hard and don't see

results. I did give up sugar and only eat something with sugar in it

occasionally. You would be surprised how much sugar is in our food...just

a thought that might work for you too.

Good luck!!

Bobbee

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[Guest guest]

Well, I sure fit into the gained weight category. It goes down when I feel okay and up when I don't ! It's kind of nuts because often when I don't feel well I have lots of sitting time in the bathroom and one would think with all that comes out, you would have to lose some weight. Oh no! Not me! Mine sneaks up and up then when I feel better it stays or slowly comes down.

It was very hard last winter with the h-pylori ulcer because fresh fruit and veggies just make me miserable so I gained back the weight I had worked hard to lose by trying to eat other foods. I don't know what it is, a craving for energy I guess, but sweets and carbs are my fall back foods when I'm especially run down.

I have to work at it again - just starting cutting the sugar will help and after an increase in prednisone, I'm slowly reducing the dosage so that should help. Good luck to all - I hope since so many of us are in the same boat we don't sink :-)

Amy

[Guest guest]

Amy, we won’t sink….but we will make

it all work! I just know it….welcome aboard!

Debby

[ ] Re:

Weight

Well, I sure fit into the gained

weight category. It goes down when I feel okay and up when I don't

! It's kind of nuts because often when I don't feel well I have lots of

sitting time in the bathroom and one would think with all that comes out, you

would have to lose some weight. Oh no! Not me! Mine sneaks up

and up then when I feel better it stays or slowly comes down.

It was very hard last winter with the h-pylori ulcer because fresh fruit and

veggies just make me miserable so I gained back the weight I had worked hard to

lose by trying to eat other foods. I don't know what it is, a craving for

energy I guess, but sweets and carbs are my fall back foods when I'm especially

run down.

I have to work at it again - just starting cutting the sugar will help and

after an increase in prednisone, I'm slowly reducing the dosage so that should

help. Good luck to all - I hope since so many of us are in the same boat

we don't sink :-)

Amy

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1. Please no religious, political, race or sexual

preference discussions.

2. NO slamming of other members, advertising or

vulgarity. Thank you!

To UNsubscribe send a blank e-mail to

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Your

use of is subject to the Terms of Service.

[Guest guest]

off and on for three years and i kep gaining

docs say you only gain if you eat too much

so i started keeping a journel

i dont eat TOO much

perhaps if i were calorie counting it might be no good but for atkins its

good

every week i say Im starting again and will be strickter i am about to

give up

========Original Message========

Subj: Re: Weight

Date: 11/19/2003 9:04:54 AM Eastern Standard Time

From: <A HREF= " mailto:caholt@... " >caholt@...</A>

Reply-to: <A

HREF= " mailto:candidiasis " >candidiasis </A>

<A

HREF= " mailto:candidiasis " >candidiasis </A>

Sent from the Internet (Details)

How long have you been on Atkins? The Candidiasis, until in check...

will slow or stop you from losing... thyroid issues... medications that

you may be on... body in starvation mode due to not eating enough...

all can prevent you from losing weight.

Dabs

sensualwordz@... wrote:

>Has any one had experience of being on the atkins diet and Not Losing at

>all

>

>

>

>

[Guest guest]

this week is bad i think i am getting to uptight and upset with this weight

i have not excersized but as a rule i do aerobis 3-4 times a week and a spot

excersize daily

i try to keep my carbs to below 20 and dont count calories

my biggest sin is in the evening i have cream in my coffee or half and half

an i may start having that in the late afternoon i work in a restaurant and

have almost not been eating anything that has sauces etc cause im worried

about hidden carbs

so i eat salad grilled chicken breast prime rib

yesterday i had omelette for dinner 1/2 lb roast beef for lunch (I was

in my car for 6 hours yesterday and for snack last nite i had about 1/4 llb of

ham

day before had salad for lunch/breakfast and broiled scrod with salad for

dinner

any my coffee as usual

is that too much No way

had thyroid checked about a year ago they said its ok

i had an over dose of antibiotics 3 years ago and thats when it seems to me

in retrospect that everything started going wrong

========Original Message========

Subj: Re: Weight

Date: 11/19/2003 9:21:43 AM Eastern Standard Time

From: <A HREF= " mailto:caholt@... " >caholt@...</A>

Reply-to: <A

HREF= " mailto:candidiasis " >candidiasis </A>

<A

HREF= " mailto:candidiasis " >candidiasis </A>

Sent from the Internet (Details)

Is the Candidiasis under control... do you have thyroid problems.... are

you on any medications like anti depressants or hormones/birth control

pills which can make you gain weight? There is a reason you are not

losing. Some people have to count their calories with Atkins... how are

your portions? Are you exercising? There is an answer here.

Dabs

sensualwordz@... wrote:

>off and on for three years and i kep gaining

>docs say you only gain if you eat too much

>so i started keeping a journel

>i dont eat TOO much

>perhaps if i were calorie counting it might be no good but for atkins its

>good

>every week i say Im starting again and will be strickter i am about to

>give up

>

>

>

>

[Guest guest]

How long have you been on Atkins? The Candidiasis, until in check...

will slow or stop you from losing... thyroid issues... medications that

you may be on... body in starvation mode due to not eating enough...

all can prevent you from losing weight.

Dabs

sensualwordz@... wrote:

>Has any one had experience of being on the atkins diet and Not Losing at

>all

>

>

>

>

[Guest guest]

Is the Candidiasis under control... do you have thyroid problems.... are

you on any medications like anti depressants or hormones/birth control

pills which can make you gain weight? There is a reason you are not

losing. Some people have to count their calories with Atkins... how are

your portions? Are you exercising? There is an answer here.

Dabs

sensualwordz@... wrote:

>off and on for three years and i kep gaining

>docs say you only gain if you eat too much

>so i started keeping a journel

>i dont eat TOO much

>perhaps if i were calorie counting it might be no good but for atkins its

>good

>every week i say Im starting again and will be strickter i am about to

>give up

>

>

>

>