Janet

[Guest guest]

In a message dated 10/20/00 8:33:58 AM Eastern Daylight Time,

janetelmes@... writes:

<<

Any other advice or information would be gratefully received.

I am a new member of the group and hope this is the correct way to

communicate.

Regards to all fellow sufferers

Janet >>

Dear Janet,

Welcome to the best support group on the net.

This a wonderful group of caring people who will answer any questions that

you might have. <A HREF= " mygroups " >eGroups : My Groups

</A>

You can also access our archives at the site above. You will find lot's of

answers there and alot of reasearch on autoimmune liver diseases.

Again, welcome aboard.

Take care,

Ginger-gehud119@...

-AIH-IN FLA.

[Guest guest]

Hi Janet, sorry I can't answer you question because Jodi couldn't tolerate

Imuran. She threw up everything she tried to eat. Right now she is broken

out all over her chest and back. She has had this ever since she was

diagnosed but it gets worse at times. Her bilirubin is higher right now I

wonder if that has anything to do with it. Take care and God bless.

Genny/Jodi's Mom/Florida

[Guest guest]

I guess everyone reacts differently on Pred. because my mother is now on 30

mg. and she is such a joy to be around. She has ITP and when her Dr.

decreased and finally took her off the Pred. she was very depressed. This is

her second go round being on Pred. now her platelets have jumped from 39,000

to over 200,000. As he decreases it again we will have to wait and see what

happens. Take care and God bless, Genny/Jodi's Mom

[Guest guest]

Janet,

I was diagnosed with AIH this month. Have a question for you. You

mentioned in your email below about 6 relapses. What is considered to be a

relapse? When your levels spike back up? My highest ALT was 1138. Just

wondered.

Thanks, Beth

AIH 10/00, MI

[ ] New Member

>

>

> > I am an individual who has had autoimmune hepatitis for about 12

> > years. I have been very fortunate in that most of my liver tests

> > have been nearly normal. I was on Imuran and prednisone for a few

> > years. Currently, I am on 5mg. of prednisone and feel I am doing

> > very well. One attempt was made to take away meds, but that lasted

> > all of 3 weeks when I went back to pre-treatment levels. I do feel

> > that prednisone has affected me especially emotionally, although I'm

> > not sure my doctor believes me.

> > Currently, I am employed as a speech pathologist, but I need to

> > get out of that field. I'm haveing a hard time coping with all of

> > the illness and chronic disability I face every day.

> > I would appreciate being in contact with others who have had the

> > disease for long periods of time and see what some of their struggles

> > have been. I've had my ups and downs and would like to relate to

> > others who may have had similar issues.

> > I look forward to participating.

> >

> >

> >

> >

[Guest guest]

Yes, it could be the gallstones. I am dues to have my gallbladder removed in a few weeks. The pain is , well actually right under my right bood. It is swollen there and uncomfortable and sometimes downright painful. I am also having pain due to the gallbladder, which is filled with gallstones, in my upper adomen and around to my back.

hope this helps

Rosemary

[Guest guest]

Thanks Rosemary,

It sounds as though you are in a lot of pain whereas I am in discomfort and that is only intermittent. Also the location seems different. If my weird feeling is the gall stone, it must be much less severe than yours. I hope all goes well with your operation.

Janet

UK

Re: [ ] Janet

Yes, it could be the gallstones. I am dues to have my gallbladder removed in a few weeks. The pain is , well actually right under my right bood. It is swollen there and uncomfortable and sometimes downright painful. I am also having pain due to the gallbladder, which is filled with gallstones, in my upper adomen and around to my back. hope this helps Rosemary

[Guest guest]

Hi Janet,

hang in there, you will be added in my prayers.

love and hugs,

Connie, MIchigan

[Guest guest]

... in time I think you'll be more at ease w/the ICD... IMHO,

it takes just about a year to really become comfortable it...

particularly if you are fortunate such as myself and never get

zapped One good point to remember here would be the purpose of

heart attacks is to cause you harm... heart attack = bad ... and the

ICD is to give you a longer life... ICD = good You might want to

keep an eye on your anxiety... some meds are capable of doing that to

us... also, sometimes they can cause depression... if it continues

ask your doc/cardio if the meds you're on might be the cause... this

is a good place to come to vent your concerns and to find support...

also, if it's available, you might want to find a " live " support

group... just interacting w/others in your same " boat " is a great

help... I know how you feel about professionals not knowing what ICD

is... when I got my first one, 6/94, no one here locally knew what

the heck they were... more recently only my former GP didn't know

where they were placed... mines in abdomen and he told me that my

scar couldn't be from ICD " cause they don't put 'em there " \o/ ...

anyway... keep hanging in there and before long this to will be old

hat.... Good Luck!

JES in NJ...

The best revenge is to live long & well.

God Bless America

We have a nice little hospital

> here in The Dalles but no cardiologist and no one seems to know

> anything about ICD's. I know because I was just in ER two nights

ago

> and they sent me home saying I had an anxiety attack.They were

> probably right as I have been very nervous about being zapped.I'm

64

> and have had three heart attacks and two by -pass surgerys but this

> ICD has upset me more than anything I,ve been thru. Guess I'll get

> used to it with time. W.

[Guest guest]

On 02.26.02 04:42 AM, " samters "

<samters > wrote:

Hi Janet,

In regards to the possibility of having surgery. Nobody can say how

long it will take for the polyps to grow back. If you have been

suffering from this condition for 20 years without surgery then it's

likely that your symptom level is pretty mild and if so it will take

longer to get to a bad point again. I'm not sure, but I think that

anyone with a real sinus polyp problem as with sampter's will have to

have surgery at some point. The surgery, for me, is expensive and a

real drag but also brings much needed relief. My recent surgery takes

me back to a 0% point where I can use steroids to try to maintain that

point as much as possible and live a halfway normal life. Eventually

my polyps will edge up to the 50% or higher point and the steroids

wont help that much anymore and I'll be back in surgery to start over.

As much as I don?t like this idea ... It's better than being plain

miserable.

snoochmail

> Hi My name's Janet and I've been dealing with allergies, asthma,

> sinusitis, ear infections (the works) for about 20 years now. I've

> spent today looking for info on Samters as I am very frustrated. My

> first asthma attack followed the ingestion of a wintergreen lifesaver

> candy. Shortly after that, I was told I was aspirin sensitive. I

> found out about cross over effects with NSAIDS by accident - taking

> ibuprofen at my sons' 3rd birthday party. I take Allegra, Nasonex

> and Flovent daily. This winter has been awful - on antibiotics more

> weeks than not for sinus infections and ear infections. It's great

> (?) to find others like me. I truly appreciate all of the

> information that's been posted. My asthma is very much under

> control, but my sinus problems are doing me in. I recently consulted

> with two drs. regarding surgery for my polyps, deviated septum and

> super-clogged sinus cavities, but I've decided to put it off. It

> seems there is no sure fix and I'm not thrilled about having surgery

> and then blocked sinuses a few months later. My goal is to avoid the

> common cold as this always leads to sinus problems. Unfortunately, I

> teach kindergarten and am regularly treated to " shared " germs.

> Thanks again - I'll be checking in periodically. Feel well!

[Guest guest]

I did a quick search, and the only thing on the web I could find that

had to do with Janet 's fitness regiem is this clip from a BBC

interview:

" Preparing for a tour, it's like two and a half hours of working out. "

" Tony the trainer likes to mix it up so we'll box, we'll run three

miles, sometimes we'll do the stairs, we'll lift for an hour and a

half. And then there's also dancing for five or six hours after that.

Then nutrition is just as important. "

Janet admits her gruelling work-out is a killer but insists it's

great for keeping her weight down:

" We lose about three to four pounds in water weight alone, every

show. Sometimes you do get tired. But after working out you feel a

lot better. "

Sounds like she works out to me, but you never know how much you can

believe from a pop star's interview.

Alys

..

[Guest guest]

Yuh...and Britney's still a virgin!! LOL

> I did a quick search, and the only thing on the web I could find

that

> had to do with Janet 's fitness regiem is this clip from a

BBC

> interview:

>

> " Preparing for a tour, it's like two and a half hours of working

out. "

>

> " Tony the trainer likes to mix it up so we'll box, we'll run three

> miles, sometimes we'll do the stairs, we'll lift for an hour and a

> half. And then there's also dancing for five or six hours after

that.

> Then nutrition is just as important. "

>

> Janet admits her gruelling work-out is a killer but insists it's

> great for keeping her weight down:

>

> " We lose about three to four pounds in water weight alone, every

> show. Sometimes you do get tired. But after working out you feel a

> lot better. "

>

>

> Sounds like she works out to me, but you never know how much you

can

> believe from a pop star's interview.

>

> Alys

>

> .

[Guest guest]

I believe it. My cousin used to be in the chorus of Broadway shows and they

worked out like crazy!!! What a body she had!

Rita

Re: Janet

I did a quick search, and the only thing on the web I could find that

had to do with Janet 's fitness regiem is this clip from a BBC

interview:

" Preparing for a tour, it's like two and a half hours of working out. "

" Tony the trainer likes to mix it up so we'll box, we'll run three

miles, sometimes we'll do the stairs, we'll lift for an hour and a

half. And then there's also dancing for five or six hours after that.

Then nutrition is just as important. "

Janet admits her gruelling work-out is a killer but insists it's

great for keeping her weight down:

" We lose about three to four pounds in water weight alone, every

show. Sometimes you do get tired. But after working out you feel a

lot better. "

Sounds like she works out to me, but you never know how much you can

believe from a pop star's interview.

Alys

.

[Guest guest]

I agree Alys, you'd think people woke up with Jan and

had breakfast with her each morning with all the

presumptions....lol

--- alysd38 <no_reply > wrote:

> I did a quick search, and the only thing on the web

> I could find that

> had to do with Janet 's fitness regiem is

> this clip from a BBC

> interview:

>

> " Preparing for a tour, it's like two and a half

> hours of working out. "

>

> " Tony the trainer likes to mix it up so we'll box,

> we'll run three

> miles, sometimes we'll do the stairs, we'll lift for

> an hour and a

> half. And then there's also dancing for five or six

> hours after that.

> Then nutrition is just as important. "

>

> Janet admits her gruelling work-out is a killer but

> insists it's

> great for keeping her weight down:

>

> " We lose about three to four pounds in water weight

> alone, every

> show. Sometimes you do get tired. But after working

> out you feel a

> lot better. "

>

>

> Sounds like she works out to me, but you never know

> how much you can

> believe from a pop star's interview.

>

> Alys

>

> .

>

>

__________________________________________________

[Guest guest]

I've followed her career since it started (we are about the same age) and it's

always been obvious to me that her weight has gone up and down and that she's

had a lot of work done i.e. nose, boobs, lipo for the abs. But it's also

obvious to me that she does lift quite seriously because I don't think there's

anyway to fake the arms she's got.

Pat

[Guest guest]

Hi Pat, I posted a long message to runwaygirlla, so I

won't type much, but look at angela basset, she's much

older than janet, and has abs, boobs, ect to die for.

I think genetics have a lot to do with it. I won't

comment on Janet's boobs and face, but I really think

her body was obtained the good old fashioned way. Just

my opinion, only she knows for sure.

--- DST27@... wrote:

> I've followed her career since it started (we are

> about the same age) and it's always been obvious to

> me that her weight has gone up and down and that

> she's had a lot of work done i.e. nose, boobs, lipo

> for the abs. But it's also obvious to me that she

> does lift quite seriously because I don't think

> there's anyway to fake the arms she's got.

>

> Pat

>

__________________________________________________

[Guest guest]

I saw a doctor in Anchorage, but live south on the peninsula in Kasilof, actually Cohoe to be exact. I saw Dr. Demain. I am now working on the Feingold program and am really able to spot what I can and can't eat and drink almost immediately. The diet is much more detailed than what I got in Anchorage.

The Feingold diet for stage one says you can have Samel Boston Ale Stock Ale and Coors Arctic Ice beer in cans or bottles only.

I have yet to find it down here. So off we go to Anchorage to do our shopping and hope to find some there. I too perfer Tequilla, but makes my nose stop up after one drink. I drink it straight, with water back and very slow like wine.

I take it you live in Anchorage?

in Kasilof

-- Re: beer

I asked the doctor who diagnosed me about beer and wine. His suggestion was to stay away from anything very malty and well-aged (my husband was grilling me about what the age thing is and why vinegar is off my diet but I can't really tell him - anyone else know vinegar?) He also said most white wines would be fine, but to stay away from reds and anything aged in oak (there's that aging thing again) I occasionally get itchy hands from drinking tequilla, but I have a suspicion that might be some yellow #5 sneaking into the Cuervo factory. - I hate to ask this on the public board, but are you in Anchorage by any chance? The diet list you posted for someone ages ago looks exactly like the one I got from the office at Alaksa Regional-Janet-

[Guest guest]

In a message dated 8/17/2004 8:35:51 PM Eastern Daylight Time,

kaclight@... writes:

What we have found to help is to

really slow down the infusion, premedicate,

May I ask what all you premedecate with?

Janet, mom to Brittany, CVID, age 13

[Guest guest]

Janet,

I'd like to second and third what everyone is telling you! If your dd isn't

tolerating IVIG at 30 mL/hour, they shouldn't be increasing it. I'd

strongly push for a slower starting rate! What can't they switch you off

caramune?

Oh, and yes, we've had the " your dd should be able to tolerate 120 mL/hour "

speech, too, but it just doesn't work for her! Her infusions run 5-6 hours

and she has no side effects to speak of. I'm happy with that. Pumping it

in faster makes her sick for days, so we aren't saving her any time that

way.

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 5, and Leah, 3

Janet

Premeds-solumedrol, benadryl, phenegan, motrin,zomig.

18 grams of Carimune

30cc hour x 15min

60cc hour x 15min

90cc hour x 15min

[Guest guest]

In a message dated 10/4/2004 7:02:30 PM Eastern Daylight Time,

rn4premies@... writes:

So tell them you want the rate slowed to see how she tolerates it

afterwards.

Thank you ! I am going to take your email with me.

I did tell them I was willing to stay all day if need be. Heck I'd stay all

night if we had to, anything to help my child! They say this is already slow.

Janet, mom to Brittany, CVID, age 13

[Guest guest]

In a message dated 10/5/2004 3:51:01 PM Eastern Daylight Time,

rn4premies@... writes:

Let us know hoe the next infusion goes.

,

I petrified of the next infusion! Brittany is still sick and this is Wed.

and she had her IVIG on Sat. This is the worst ever and this is her 6th one!

Janet, mom to Brittany, CVID, age 13

[Guest guest]

Hi, Janet,

Hmmm - what gave you the idea that you can think about this??? Just

pack your new " kerchief " and a button down blouse and go! Stay in town the

night before if the hospital is a long distance from you. Be grateful for a

morning surgery so you won't be fasting for 3 days! LOL Congratulations!!

) Jackie

[Guest guest]

Hi, Janet,

You went to Brussels and brought back no chocolate for the rest of us!

HUH!! Well, then your clothes will disapear during your surgery and you

will have to wear the hospital smock home - the one that keeps flapping open in

the back! LOL Seriously - your clothing is bagged in a see through thing

and tagged with your name. If it is your crummy clothing, you'll be sorry to

see it is all there when you are ready to go home! LOL Do not leave the

hospital without them giving you care instructions - IN WRITING! Sometimes

these

are already typed for you, and you sign that you have received it. If it

isn't, do not leave until someone writes it down for you! Along with that you

may receive the date you are to go to your dr to remove the staples. Many dr

ask you to call once you are home to make that appointment. If you live

very far from your surgeon, be sure to ask if it would be ok if your local dr

removes the staples. (If you are comfortable with this). There is usually no

reason you need to travel 2 hours when your local dr can do it and tell if

there is infection or not. (VERY rare). Clothing again - wear a button down

- a large bandage may still be on your head when you leave. Remember your

ear is tiny so they have to wrap your entire head to get the bandade to stay on

your ear! So don't be alarmed! If you sneeze, it will not blow your

brains out. It may, however, produce some gross stuff, so use a tissue! LOL

Good luck, janet - and stop worrying!!!

) jackie

[Guest guest]

Thank you Lee, Alice and Jackie for addressing my odd pre-op worries.

Fortunately I've had a project at work today that is keeping my mind

off the surgery tomorrow. I just hope I can get some sleep tonight.

I did get post-care instructions in writing - the one that said not

to sneeze. Hence my worries that I'd blow out my brains or the

implant. Still, if I focus on sneezing properly I won't have to worry

about the hookup.....

Gotta worry about somethin' you know!

Janet

[Guest guest]

Janet,

You'll be in our thoughts as you go into surgery tomorrow.

I know everything will be ok, your ears will be in good hands LOL

Please post when you feel up to it and let us know how everything

went.

Wishing you all the best.

Hugs,

Silly MI

In , " janet_mueller " <janet_mueller@y...>

wrote:

>

> Thank you Lee, Alice and Jackie for addressing my odd pre-op

worries.

> Fortunately I've had a project at work today that is keeping my

mind

> off the surgery tomorrow. > Janet

[Guest guest]

Janet,

When I went in for my mapping today and had my T and C levels raised, I

could instantly tell how much clearer and louder everything sounded. I asked

the audi I saw today to increase my T/C levels a little more than they were

last time since even after my CI was activated, I found alot of softer

sounds to be inaudible. Today I noticed that I'm having an easier time

hearing a wider variety of sound. I even had to turn down the volume on my

TV a few notches from where it was set yesterday.

Implanted: 12/22/04 Activated: 1/18/05

Deafblind/Postlingual

BTE hearing aid user 20 years

Severe-profound hearing loss 10 years

" Surviving a loss and letting go is only half of the story. The other half

is the secret belief that we will find, in one form or another, what we have

lost. And it is that potential, shimmery as a star on a clear night, that

helps us survive. " -- Chambers