Re: Not feeling well

[Guest guest]

Dear :

Sorry to hear that you're not feeling well. It's totally possible that

things could be acting up. You need to let your doctor know right away about

your symptoms. It takes a while to get things under control. I bounced

between 15 and 20 mg. for a long time. Good luck! Take care!

Kathy (AIH)

Seattle area

[Guest guest]

:

Sounds like you are decreasing the prednisone too fast., Call your doctor

and discuss with him tomorrow.

Sue AIH

Wisconsin

[Guest guest]

----------

> ,

Just a thought, you may have gone down on the pred too quickly. Some can do

that others can't. I had at one stage been going down 10 or 5, got sick

again and now it is by 2.5 and that seems to be working. Hope you are

feeling better. A word to the doctor is a must though, he will probably do

blood tests to see what the enzymes are doing, you need to know that.

SueB.

[Guest guest]

; you're doctor is taking you lower on the prednisone too soon. Call

him or her to let them know how you are feeling.

[ ] Not feeling Well

>From: MASI ANDREA <amasi@...>

>

>Hello Everyone

>

>This is from Canada. I joined the group recently. I started

>prednisone about 4 weeks ago (at 30 mg/day) and are now taking 15

>mg/day. Since the decrease in dose from 20 to 15 mg/day I have not been

>feeling well at all. It feels like the symptoms of AIH are back. For

>the last couple of days I have experienced nausea, vomiting and severe

>fatigue. As anyone experienced worsening of symptoms as the prednisone

>doses decrease? I felt so bad today I had to miss work. I would

>appreciate some feedback.

>

>Thanks

>

>, Canada

>

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

[Guest guest]

Hi ,

I'm sorry you're not feeling well, and I hope it passes for you soon! I'm

also from Canada. I've been on Prednisone and Azathioprine for just over 2

months. I started pred at 40mg, and am now at 15mg. I have been decreasing

by 5mg at 2 week intervals. I've definitely found that I feel lousy after

each change in dose. At the beginning I'd have a couple of " bad " days soon

afterwards. Now, it's not so bad. I don't have crazy bad days, but I'm a

lot more tired than usual. I hope you've had a chance to talk to your

doctor to ease your worries!

>From: MASI ANDREA <amasi@...>

>Reply- onelist

> " onelist " < onelist>

>Subject: [ ] Not feeling Well

>Date: Tue, 31 Aug 1999 23:24:39 -0500

>

>From: MASI ANDREA <amasi@...>

>

>Hello Everyone

>

>This is from Canada. I joined the group recently. I started

>prednisone about 4 weeks ago (at 30 mg/day) and are now taking 15

>mg/day. Since the decrease in dose from 20 to 15 mg/day I have not been

>feeling well at all. It feels like the symptoms of AIH are back. For

>the last couple of days I have experienced nausea, vomiting and severe

>fatigue. As anyone experienced worsening of symptoms as the prednisone

>doses decrease? I felt so bad today I had to miss work. I would

>appreciate some feedback.

>

>Thanks

>

>, Canada

>

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

[Guest guest]

Dear ,

Hi again! I live in Ontario, near Toronto. LOVE Canada.

I think it's a good idea for you to go on disability and slow down. I had a

hard time doing this too, because I like to be on the go. I think the key

thing is to try to control the stress, and work can definitely cause this.

I chose to work part-time this summer doing data entry through a temp

agency, which I find to cause no stress. I'm totally focusing on getting

those levels down.

Before this AIH set in, my problem was my tendency to worry. I was not very

good at handling stress. Now, I think to myself that since stress

aggravates all my symptoms, something has to be pretty important before I

think twice about it. I'm COOL JOE now (or SUZY)!

Whatever works for you..since you like to be busy, maybe put all your

efforts into getting better (ie.making sure you get in your nap, or read

about diet, etc.etc.). But please don't feel guilty about taking time off.

Getting your health under control is important. I hope your tests turn out

positively, and things start settling down for you soon! (nausea's no fun at

all)

>From: MASI ANDREA <amasi@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Not feeling Well

>Date: Wed, 01 Sep 1999 23:30:15 -0500

>

>From: MASI ANDREA <amasi@...>

>

>Hi

>

>Thanks for your reply. I did talk to me doctor today and I am scheduled

>for some test next week. I hope to get some answers soon. Today I felt

>much better, although the nausea and fatigue are still there. I have

>been considering going on short term disability from work to see if I

>can regain some of my health back. I am not a person that can can relax

>easily or take time off, but now I see that my body requires that. I

>live in Manitoba, where do you live?

>

>

>

>emily simpson wrote:

> >

> > From: " emily simpson " <esimpson7@...>

> >

> > Hi ,

> >

> > I'm sorry you're not feeling well, and I hope it passes for you soon!

>I'm

> > also from Canada. I've been on Prednisone and Azathioprine for just

>over 2

> > months. I started pred at 40mg, and am now at 15mg. I have been

>decreasing

> > by 5mg at 2 week intervals. I've definitely found that I feel lousy

>after

> > each change in dose. At the beginning I'd have a couple of " bad " days

>soon

> > afterwards. Now, it's not so bad. I don't have crazy bad days, but I'm

>a

> > lot more tired than usual. I hope you've had a chance to talk to your

> > doctor to ease your worries!

> >

> >

> >

> > >From: MASI ANDREA <amasi@...>

> > >Reply- onelist

> > > " onelist " < onelist>

> > >Subject: [ ] Not feeling Well

> > >Date: Tue, 31 Aug 1999 23:24:39 -0500

> > >

> > >From: MASI ANDREA <amasi@...>

> > >

> > >Hello Everyone

> > >

> > >This is from Canada. I joined the group recently. I started

> > >prednisone about 4 weeks ago (at 30 mg/day) and are now taking 15

> > >mg/day. Since the decrease in dose from 20 to 15 mg/day I have not

>been

> > >feeling well at all. It feels like the symptoms of AIH are back. For

> > >the last couple of days I have experienced nausea, vomiting and severe

> > >fatigue. As anyone experienced worsening of symptoms as the

>prednisone

> > >doses decrease? I felt so bad today I had to miss work. I would

> > >appreciate some feedback.

> > >

> > >Thanks

> > >

> > >, Canada

> > >

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

[Guest guest]

Do any of you have this problem -- sooooo very tired but wide awake?

J

>From: " emily simpson " <esimpson7@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Not feeling Well

>Date: Wed, 01 Sep 1999 21:13:45 PDT

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>From: " emily simpson " <esimpson7@...>

>

>Hi ,

>

>I'm sorry you're not feeling well, and I hope it passes for you soon! I'm

>also from Canada. I've been on Prednisone and Azathioprine for just over 2

>months. I started pred at 40mg, and am now at 15mg. I have been

>decreasing

>by 5mg at 2 week intervals. I've definitely found that I feel lousy after

>each change in dose. At the beginning I'd have a couple of " bad " days soon

>afterwards. Now, it's not so bad. I don't have crazy bad days, but I'm a

>lot more tired than usual. I hope you've had a chance to talk to your

>doctor to ease your worries!

>

>

>

>

>>From: MASI ANDREA <amasi@...>

>>Reply- onelist

>> " onelist " < onelist>

>>Subject: [ ] Not feeling Well

>>Date: Tue, 31 Aug 1999 23:24:39 -0500

>>

>>From: MASI ANDREA <amasi@...>

>>

>>Hello Everyone

>>

>>This is from Canada. I joined the group recently. I started

>>prednisone about 4 weeks ago (at 30 mg/day) and are now taking 15

>>mg/day. Since the decrease in dose from 20 to 15 mg/day I have not been

>>feeling well at all. It feels like the symptoms of AIH are back. For

>>the last couple of days I have experienced nausea, vomiting and severe

>>fatigue. As anyone experienced worsening of symptoms as the prednisone

>>doses decrease? I felt so bad today I had to miss work. I would

>>appreciate some feedback.

>>

>>Thanks

>>

>>, Canada

>>

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

[Guest guest]

Hi

Thanks for your reply. I did talk to me doctor today and I am scheduled

for some test next week. I hope to get some answers soon. Today I felt

much better, although the nausea and fatigue are still there. I have

been considering going on short term disability from work to see if I

can regain some of my health back. I am not a person that can can relax

easily or take time off, but now I see that my body requires that. I

live in Manitoba, where do you live?

emily simpson wrote:

>

> From: " emily simpson " <esimpson7@...>

>

> Hi ,

>

> I'm sorry you're not feeling well, and I hope it passes for you soon! I'm

> also from Canada. I've been on Prednisone and Azathioprine for just over 2

> months. I started pred at 40mg, and am now at 15mg. I have been decreasing

> by 5mg at 2 week intervals. I've definitely found that I feel lousy after

> each change in dose. At the beginning I'd have a couple of " bad " days soon

> afterwards. Now, it's not so bad. I don't have crazy bad days, but I'm a

> lot more tired than usual. I hope you've had a chance to talk to your

> doctor to ease your worries!

>

>

>

> >From: MASI ANDREA <amasi@...>

> >Reply- onelist

> > " onelist " < onelist>

> >Subject: [ ] Not feeling Well

> >Date: Tue, 31 Aug 1999 23:24:39 -0500

> >

> >From: MASI ANDREA <amasi@...>

> >

> >Hello Everyone

> >

> >This is from Canada. I joined the group recently. I started

> >prednisone about 4 weeks ago (at 30 mg/day) and are now taking 15

> >mg/day. Since the decrease in dose from 20 to 15 mg/day I have not been

> >feeling well at all. It feels like the symptoms of AIH are back. For

> >the last couple of days I have experienced nausea, vomiting and severe

> >fatigue. As anyone experienced worsening of symptoms as the prednisone

> >doses decrease? I felt so bad today I had to miss work. I would

> >appreciate some feedback.

> >

> >Thanks

> >

> >, Canada

> >

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

[Guest guest]

susan johnson wrote:

> Do any of you have this problem -- sooooo very tired but wide awake?

Yes, I do. I am up half the night, but I'm exhausted. I just can't

sleep.

Nina

PBC

[Guest guest]

J:

Spend many nights awake but dead tired. Then I can't do anything the next

day without about a three hour nap.

Sue AIH

Wisconsin

[Guest guest]

I too am reducing pred. I am down to 5mgs. I am tired alot. Even if i

sleep for 9 hours. How can I be so tired and do so little. I have been

turned down 2 times for ss disability now I must get a lawyer.Has anyone

ever heard of or possibly use a firm called Binder & Binder I live near

Phila. and they have an ad on television. I need advise on how to

procede. My Dr. said I can't work I have not worked since Feb.

Pa.

[Guest guest]

Yes, on and off for years. Lynn aih I thought liver disease is noted for

giving problems with sleeping.

susan johnson wrote:

> From: " susan johnson " <shireen42@...>

>

> Do any of you have this problem -- sooooo very tired but wide awake?

>

> J

>

> >From: " emily simpson " <esimpson7@...>

> >Reply- onelist

> > onelist

> >Subject: Re: [ ] Not feeling Well

> >Date: Wed, 01 Sep 1999 21:13:45 PDT

> >MIME-Version: 1.0

> >From errors-165537-5835-shireen42 Wed Sep 01 21:14:16 1999

> >Received: from [209.207.164.235] by hotmail.com (2.1) with ESMTP id

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> > -owneronelist

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> >

> >From: " emily simpson " <esimpson7@...>

> >

> >Hi ,

> >

> >I'm sorry you're not feeling well, and I hope it passes for you soon! I'm

> >also from Canada. I've been on Prednisone and Azathioprine for just over 2

> >months. I started pred at 40mg, and am now at 15mg. I have been

> >decreasing

> >by 5mg at 2 week intervals. I've definitely found that I feel lousy after

> >each change in dose. At the beginning I'd have a couple of " bad " days soon

> >afterwards. Now, it's not so bad. I don't have crazy bad days, but I'm a

> >lot more tired than usual. I hope you've had a chance to talk to your

> >doctor to ease your worries!

> >

> >

> >

> >

> >>From: MASI ANDREA <amasi@...>

> >>Reply- onelist

> >> " onelist " < onelist>

> >>Subject: [ ] Not feeling Well

> >>Date: Tue, 31 Aug 1999 23:24:39 -0500

> >>

> >>From: MASI ANDREA <amasi@...>

> >>

> >>Hello Everyone

> >>

> >>This is from Canada. I joined the group recently. I started

> >>prednisone about 4 weeks ago (at 30 mg/day) and are now taking 15

> >>mg/day. Since the decrease in dose from 20 to 15 mg/day I have not been

> >>feeling well at all. It feels like the symptoms of AIH are back. For

> >>the last couple of days I have experienced nausea, vomiting and severe

> >>fatigue. As anyone experienced worsening of symptoms as the prednisone

> >>doses decrease? I felt so bad today I had to miss work. I would

> >>appreciate some feedback.

> >>

> >>Thanks

> >>

> >>, Canada

> >>

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

[Guest guest]

, have heard of them, but I used a local lawyer who does this kind of

work all the time. He was very efficient and helpful. If you can come to

Woodbury NJ, I can give you his name.

Are you familiar with any docs at Jeff? I am supposed to see Dr. Conn of

the Jeff transplant team on Oct.25. Only for evaluation of my liver, not

for transplant.

J

>From: zjm@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Not feeling Well

>Date: Thu, 2 Sep 1999 09:50:00 -0400 (EDT)

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>From: zjm@...

>

>I too am reducing pred. I am down to 5mgs. I am tired alot. Even if i

>sleep for 9 hours. How can I be so tired and do so little. I have been

>turned down 2 times for ss disability now I must get a lawyer.Has anyone

>ever heard of or possibly use a firm called Binder & Binder I live near

>Phila. and they have an ad on television. I need advise on how to

>procede. My Dr. said I can't work I have not worked since Feb.

>

> Pa.

>

>

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

[Guest guest]

Hi ,

Welcome to the club, we all have that symptom!!!

(AIH)

[Guest guest]

Also, by law, lawyer is not paid unless you win the case, and then can ask

no more than 25% of the financial lump sum awarded.

J

>From: " Don Hanson " <DonHanson@...>

>Reply- onelist

>< onelist>

>Subject: RE: [ ] Not feeling Well

>Date: Fri, 3 Sep 1999 10:19:47 -0500

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>From: " Don Hanson " <DonHanson@...>

>

>It's quite common to be turned down for SSDI twice. The vast majority are

>approved at the Administrative Law Judge appeal. It is unfortunate that we

>need to hire a lawyer to ensure that we get what we are entitled to. It

>seems odd to me to sue the government! But most of us have to do it. I

>prefered a small, one person, firm. Just be sure that 1) the lawyer only

>does SSDI cases, and 2) the lawyer has successfully represented autoimmune

>and liver disease cases. This is important because fatigue is our most

>debilitating condition, and fatigue is the least understood by most people.

>It is important that the lawyer can understand and convey to the ALJ just

>how debilitating the fatigue from liver and autoimmune diseases can be.

>

>I just recently won my case before the ALJ. If you would like to discuss

>this further, please e-mail me privately.

>

>Don

>AIH Minneapolis

>

>

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

[Guest guest]

Thanks for the info. I have never been to Jeff. let me know what

you think.

Pa.

[Guest guest]

It's quite common to be turned down for SSDI twice. The vast majority are

approved at the Administrative Law Judge appeal. It is unfortunate that we

need to hire a lawyer to ensure that we get what we are entitled to. It

seems odd to me to sue the government! But most of us have to do it. I

prefered a small, one person, firm. Just be sure that 1) the lawyer only

does SSDI cases, and 2) the lawyer has successfully represented autoimmune

and liver disease cases. This is important because fatigue is our most

debilitating condition, and fatigue is the least understood by most people.

It is important that the lawyer can understand and convey to the ALJ just

how debilitating the fatigue from liver and autoimmune diseases can be.

I just recently won my case before the ALJ. If you would like to discuss

this further, please e-mail me privately.

Don

AIH Minneapolis

[Guest guest]

Hi ,

Your Prednisone reduction sounds rather rapid to me, but I know that many

people do take high dosages of Prednisone and then are rapidly withdrawn. I

don't think that short term pred treatment with rapid withdrawal usually causes

some of the side effects that long-term users experience.

My understanding is that Prednisone is usually prescribed for liver

inflammation and that it has the added benefit of being an anti-organ rejection

drug. Azathoprine/Imuran or a similar drug is used as the primary

anti-rejection drug, and once the inflammation is assumed under control the

dosage of Prednisone is reduced.

I actually felt better as my Prednisone was reduced until I got under 10 mgs.

I assume that by now you've called your doctor? If not, you need to make him

or her aware of what's going I had nausea and vomiting, but only when I first

started taking Prednisone and Imuran. The fatigue was ongoing but was

especially severe when I started the meds. Now it's just a fact of life but

it's never as overwhelming as it was in the beginning. If you've been feeling

well enough to work and now are extremely sick, that's even more reason for

you to see your doctor as soon as possible. There can be so many reasons for

the way you feel and it may be nothing to worry about, but you have to be

certain of that. Also, your doctor should be able to give you something for

the nausea. I was given Compazine and it was very effective, but nausea was

not a major problem for me.

Take care,

Geri

[Guest guest]

I would say that it could be your gallbladderbut also i have the same feeling

your talking about. I get that also it goes in spurts. hope you feel better.

[Guest guest]

Peggy, Sounds like your gall bladder could be the problem. I had 5 GB

attacks before having mine out, and they felt like that. Good luck to you.

You'll be OK, just need to figure this out and deal with it, but you'll be

fine. Don't think its MGB related. PhillyJude

[Guest guest]

Hi Peggy,

Definitely talk to your PCP about it. We are not doctors here but it sounds

like something your doctor needs to check. HUGS.

aW

MGB 5/28/00

214/118

Not Feeling Well

Hi Group,

I wanted to get some of your thoughts on how I've been feeling lately. I am 5

months post-op and have lost 71 lbs so far. I have had (up until the last 2-3

weeks) normal eating habits and not much seemed to bother me except high sugar

items and fried foods. But for the most part, I could eat whatever I wanted,

within moderation. Now, every time I eat ANYTHING, I feel like I have

over-eaten after just a few bites. I get a bloated, yucky feeling and my

stomach feels awful. This has been going on for @ 3 weeks now. Today, I had a

small turkey sandwich for lunch - turkey, 1/2 slice cheese, tomato, spinach, a

little mayo and mustard on whole wheat. I only ate about 1/3 to 1/2 of it and

within a short time I was feeling yucky. About an hour or so later, I started

having what felt like a cramp in my right side, just under my right rib cage. I

kept stretching it out, thinking I was getting it from sitting on the ground and

planting flowers (which I was doing at the time). Within a few minutes I was in

excruciating pain. It was so bad, I couldn't get up. When I finally struggled

to my feet, I couldn't stand up straight and I felt like I couldn't take a

breath. It was frightening. I finally made it into the house and laid down.

The sharp pain subsided about a half hour later but I still felt bad. Could

this be a gall bladder attack? I am losing @ 8-10 lbs a months now and stopped

taking my actigall about a week ago when my prescription ran out. I planned on

getting a new prescription when I go in for my next check-up on 6/12/01. The

symptoms had started before I stopped taking the actigall, but at the time I

didn't realize that it might be my gall bladder. That never crossed my mind

until today. Any thoughts or suggestions? I do plan on calling my PCP tomorrow

(the office was closed when I tried to call after the attack today). Any help

would be greatly appreciated. Thanks so much! )

Hugs to All,

Peggy in Ohio

12/29/00

269/198

[Guest guest]

---

>

> PEGGY..........Could this be a gall bladder attack?

YES! Call/PAge Dr. R 8-10 pounds is still a large amount of weight to

loose . Actigal may not always stop attacks.

I hope you feel better soon, try going back on carafate ask Dr first,

that help the bloat/ nausious feeling.......

Let us know ...

Lori

> From: Peggy Pressler

> @y...

> Sent: Thursday, May 31, 2001 10:33 PM

> Subject: Not Feeling Well

>

>

> Hi Group,

>

> I wanted to get some of your thoughts on how I've been feeling

lately. I am 5 months post-op and have lost 71 lbs so far. I have

had (up until the last 2-3 weeks) normal eating habits and not much

seemed to bother me except high sugar items and fried foods. But for

the most part, I could eat whatever I wanted, within moderation.

Now, every time I eat ANYTHING, I feel like I have over-eaten after

just a few bites. I get a bloated, yucky feeling and my stomach

feels awful. This has been going on for @ 3 weeks now. Today, I had

a small turkey sandwich for lunch - turkey, 1/2 slice cheese, tomato,

spinach, a little mayo and mustard on whole wheat. I only ate about

1/3 to 1/2 of it and within a short time I was feeling yucky. About

an hour or so later, I started having what felt like a cramp in my

right side, just under my right rib cage. I kept stretching it out,

thinking I was getting it from sitting on the ground and planting

flowers (which I was doing at the time). Within a few minutes I was

in excruciating pain. It was so bad, I couldn't get up. When I

finally struggled to my feet, I couldn't stand up straight and I felt

like I couldn't take a breath. It was frightening. I finally made

it into the house and laid down. The sharp pain subsided about a

half hour later but I still felt bad. Could this be a gall bladder

attack? I am losing @ 8-10 lbs a months now and stopped taking my

actigall about a week ago when my prescription ran out. I planned on

getting a new prescription when I go in for my next check-up on

6/12/01. The symptoms had started before I stopped taking the

actigall, but at the time I didn't realize that it might be my gall

bladder. That never crossed my mind until today. Any thoughts or

suggestions? I do plan on calling my PCP tomorrow (the office was

closed when I tried to call after the attack today). Any help would

be greatly appreciated. Thanks so much! )

>

> Hugs to All,

> Peggy in Ohio

> 12/29/00

> 269/198

>

>

>

[Guest guest]

Is this Chris? and if so how are you doing?

Pat

Re: Not Feeling Well

I would say that it could be your gallbladderbut also i have the same feeling

your talking about. I get that also it goes in spurts. hope you feel better.

[Guest guest]

Oh Peggy yes it could be Gallbladder! I had the same thing in March and they

had to remove it ASAP 3/18 its incrediable pain I was on Atigall but it did

not stop my gallbladder from almost eruppting. If it happens again you might

want to consider Emergency room. They can take a CAT SCAN and tell right

away. Good Luck

Day

KC MO

2/8 Im down 65 pounds

[Guest guest]

Peggy,

I have gotten like that mostly with Bread or Beef. I really avoid bread or

only eat a tiny amount. Beef, I still occasionally eat maybe one

ounce....very slowly but I like the taste still. I do not do deep fried

anything.

Not Feeling Well

>Hi Group,

>

>I wanted to get some of your thoughts on how I've been feeling lately. I

am 5 months post-op and have lost 71 lbs so far. I have had (up until the

last 2-3 weeks) normal eating habits and not much seemed to bother me except

high sugar items and fried foods. But for the most part, I could eat

whatever I wanted, within moderation. Now, every time I eat ANYTHING, I

feel like I have over-eaten after just a few bites. I get a bloated, yucky

feeling and my stomach feels awful. This has been going on for @ 3 weeks

now. Today, I had a small turkey sandwich for lunch - turkey, 1/2 slice

cheese, tomato, spinach, a little mayo and mustard on whole wheat. I only

ate about 1/3 to 1/2 of it and within a short time I was feeling yucky.

About an hour or so later, I started having what felt like a cramp in my

right side, just under my right rib cage. I kept stretching it out,

thinking I was getting it from sitting on the ground and planting flowers

(which I was doing at the time). Within a few minutes I was in excruciating

pain. It was so bad, I couldn't get up. When I finally struggled to my

feet, I couldn't stand up straight and I felt like I couldn't take a breath.

It was frightening. I finally made it into the house and laid down. The

sharp pain subsided about a half hour later but I still felt bad. Could

this be a gall bladder attack? I am losing @ 8-10 lbs a months now and

stopped taking my actigall about a week ago when my prescription ran out. I

planned on getting a new prescription when I go in for my next check-up on

6/12/01. The symptoms had started before I stopped taking the actigall, but

at the time I didn't realize that it might be my gall bladder. That never

crossed my mind until today. Any thoughts or suggestions? I do plan on

calling my PCP tomorrow (the office was closed when I tried to call after

the attack today). Any help would be greatly appreciated. Thanks so much!

)

>

>Hugs to All,

>Peggy in Ohio

>12/29/00

>269/198

>

>

>