Chris

October 15, 2002

Thanks - I will ask my GI about it!! I think that is the drug my girlfriend used who has lupus....

Randi

Re: [ ] Re:Chris

Randi..Sounds like you have RA along with your AIH.... go see arheumotologist who should better help you....You shouldn't have to live in pain...jerry : )

October 30, 2002

Thanks I will make the next one.......

October 30, 2002

Thanks I will make the next one.......

June 19, 2003

I'm sorry, I don't mean for you to think any of us are ignoring you at all. In

my case, I think I've been here for a year, but not sure, I'd have to look. I

was the same way when I first came in the group. I only mention names if I know

for sure what I'm talking about LOL For instance, if I forget that is

totally disabled like myself, I won't use her as an example of people here that

are totally disabled, etc. Sorry to leave you out, I honestly don't remember

seeing you post info about your situation but I also have a bad memory

sometimes. Sorry that you have to be here but glad you are.. hope that makes

sense lol I sometimes don't answer posts from people if I know there's nothing I

can say to help, like neck people. I've only recently found out about a problem

in the neck at C5-6, I'm disabled b/c of my lower back (L5-S1), have had 2

surgeries there within 8 mos of each other, today I feel the same as I did when

this all started (I thought I was having cramps for the

first time in my life, boy was I off LOL) I will start asking questions about

my neck area if my doc says lets try this or you need that, etc, but till I see

her no sense in dwelling on it and getting upset. I was shocked when the MRI

showed the buldging disk, but I have buldging disks in other places that aren't

" bad " enough to warrent surgery so no need to get all hyped up for nothing till

I know facts. Again, sorry and welcome to our group.

Connie

>

> Hi everyone. Have I ever introduced myself to you all? I feel like

> everyone knows everyone and I am never mentioned. I don't always post

> everyday(due to pain & I don't want to load everyone else down) but I am

> reading and lurking as some as told me. I would like to be a part of this

> group and if I need to repost my story or whatever I'd be glad to become a

> part of your group. Chris

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August 30, 2003

:

Rob went to counseling from March till June. His rheumy suggested it. It

did him so much good. We would start out the session together, then Rob

would be with the counselor one on one. It not only helped Rob, but

usually, on the way home, we would have the best, most open discussions.

His attitude and ability to deal with things changed so much. I am so

glad that we did it.

I'll keep in my prayers...I know that this time of his life is very

difficult, and old Arthur doesn't make it any easier. take care

and Rob 14 Juvenile Ankylosing Spondylitis

On Fri, 29 Aug 2003 09:48:06 -0500 " Tepper, Michele "

<MTepper@...> writes:

> After reading 's post as well, it sounds to me like our teens

> are

> all having a go of it right now with their arthritis! is now

> having some back pain as well as the swelling in his foot. But of

> course, he cannot go back to 10 mgs of MTX. He just won't do it.

> Nor

> will he take any Celebrex. This is pretty hard for me. He is having

> a

> tough first week of school - he is quite tired as well and worried

> about

> the classes he chose. They are tough, but I know he can do it. He

> doesn't want to get involved in anything nor can we get him to apply

> for

> a job. I am worried because he doesn't seem to want to do

> much,except

> work out. Perhaps this is a phase, or could it be something more, do

> you

> think? He has mentioned that he hates taking meds and feeling

> different.

> I am thinking of looking into some short term counseling to see if

> it

> would help. He does seem open to the idea. He is normally such a

> happy,

> even tempered soul,taking everything in stride. I wonder if the

> hormones

> of the teen years have caught up with him? Thanks for listening to

> my

> ramblings! Michele (16, pauci & spondy)

>

> Re: Update on Josh (was ...Re: hypercalciuria)

>

> Hi Michele,

>

> Thanks for your positive thoughts. So far, I guess everything is

> fine.

> He probably just needed some extra rest, after a few very busy days.

> I

> should have known that. I don't know why I worry, still, even when

> it's

> just small things. I hope is doing alright these days?

>

> Aloha,

> Georgina

>

> Tepper, Michele wrote:

> > Hi, Georgina. Hope Josh is just feeling the effects of camp and

> > getting the rest he needs. Not starting a flare. Like you say,

> stress

> > can bring one on and starting school is definitely a stressor!

> Perhaps

>

> > with the extra sleep his body is trying to take care of itself?

> Hope

> > today is a better one! Michele (16,pauci & spondy)

> >

> > -----Original Message-----

> > From: Georgina [mailto:gmckin@...]

>

> > That's good, that Rob's teacher phoned you. Always good to keep

> the

> > lines of communication open between home and school. I hope all of

>

> > 's teachers will feel free (and be inclined) to stay in

> touch,

> > too. I hope Rob is alright? With so much going on, it's no wonder

> he

> was

> > feeling stressed out. I guess I'll have to wait and see. Today is

> Josh's

> > first 'real' day at school ...

>

> To leave this mailing list, send request to:

> -unsubscribe

>

October 30, 2003

With a liver biopsy of Grade 1 Stage 0-1 you have no real liver

damage. Genotype 1 does not respond nearly as well to treatment as

the other genotypes, so that 50-60% doesn't apply to Genotype 1. The

medical field considers a response as erradication of the virus. And

a sustained response means that 6 months AFTER treatment has ended

the virus still does not show up in the blood tests. This rarely

happens with Genotype 1. While the viral load may go undetected while

on treatment, it tends to come back more often for Genotype 1 than

any other genotype.

If my liver biopsy showed Grade 1 Stage 0-1 I wouldn't even consider

doing treatment. It does work to keep the liver damage at a minimum,

and does slow the progression, but with little or no damage, as your

biopsy says, it's not worth the problems the treatment can cause.

This is just my opinion. I've done treatment 4 times since 1998 and

am a Genotype 1a. I have Bridging Fibrosis on biopsy, Stage 3 Grade

2. You have time to wait for better drugs to come along that may work

a lot better for our Gentotype.

To treat or not is a very personal decision and you need to make sure

you know all you can about the treatment AND the side effects that go

along with it. It's the best way to make an informed decision.

Hope this answered your question!!

LeighAnn

March 27, 2004

you just did! sheila

<moneyatwork@...> wrote:how do I post something on this site for

everyone to read?

Re: - Highly Sensitive Person

> Date: Fri, 26 Mar 2004 19:50:02 -0000

>

> have you ever read any books about HSP (highly sensitive person)?

>

> _________________________________________________________________

> Get tax tips, tools and access to IRS forms – all in one place at MSN

Money!

> http://moneycentral.msn.com/tax/home.asp

>

July 4, 2004

http://www.rxlist.com/cgi/generic/sertral_ad.htm

very nice set up of interactions

> http://qualitycounts.com/drugs/antidepressants.html

>

> alot of info to go through, but very difficult to say liver

> involvement even though I have read this many times in past

articles

> in very small print---

>

> I'll keep on checking to see what I can find

July 8, 2004

--

so sorry to hear that your son also has Hep C -- my heart just sank.

sending healing wishes and prayers to you!!!

Re: Recent sleep problem-HELP!

Hi Dee...

Sorry for all of the yuckiness in your life. Mine is pretty yucky

too.

Stress definitely increases your need for thyroid hormone.

A couple of months ago, I was on 100mgs of Synthroid, sometimes 150

depending on what my activity was like.

During that time I found out that I had Hep C and my stress level went

up considerably, however my doc wanted me to come down on my meds

as my blood work indicated that I needed to.

She had me come down to 75mgs. I have had significant trouble sleeping

since.

In addition, it turns out that my youngest son also has Hep C.

This I found out just a few days ago....I went back to 100mgs and just

after a couple of nights I'm sleeping better.

My mind still races, but that's because it's packed with worry!

Sounds like yours is too.

I have never been one to keep a diary, but my mother suggested that I start.

It really has helped to write down the things I am concerned about and at

least

one possible thing to do about it...before I go to sleep.

Even if I don't ever look at the thought on paper again...I have temporarily

" filed " it somewhere else so that I can rest.

I am a single parent with alot of responsibilities. It seems like nothing

ever gets

done..just half done.

That frustrates the heck out of me. I'm kind of an A personality.

I have a big house and yard and it was making crazy because things were just

out of whack. Either the lawn needed mowing or the floors needed mopped.

So, in the evening before I went to bed, I gave myself a small goal for the

next day.

I wrote down what bugged me the most. For me it was the yard.

I wrote down what about the yard bugged me, and what steps I could take to

remedy it. The next day I would do something on the list to get me toward

the

goal of a clean yard...It took about three days to complete but, the yard is

under

control and my mind is clearer. Then I move on to the next thing.

I know that certain things are out of your control right now, like divorce.

Thats a

biggie. I've been there! but, keeping the things you CAN control in order

really

helps to minimize the reaction you have to the other stressors.

Sorry this is so long, but it is a combination of things that add to

difficulty sleeping.

I would inch up on meds, and try a new way to cope with all of the yuk, and

see it if helps.

be strong!

C.

July 13, 2004

Hi,

I am and I am female. Short for . My mom had her hip done

on July 7th.

Chris

Whoops - did I get it wrong? If so, my apologies! I somehow assumed that

Chris

was a boy's name - didn't occur to me it was also a girl's name!

Sorry - which are you?

Margaret-in-Israel

Re: Mom's surgery today

Hi

I'm glad your Mom came through the surgery ok I sorry I thought you where

a

daughter well I thought y was a guy I guess its me .

Well you take care and wish your Mom the best of luck.

Juneflower60 or

Susie

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July 13, 2004

Hi

Good to hear from you again. Sorry about my mistake!

How is your mom doing now?

Margaret in Israel

Re: Mom's surgery today Hi I'm glad your Mom came through the surgery ok I sorry I thought you where adaughter well I thought y was a guy I guess its me . Well you take care and wish your Mom the best of luck. Juneflower60 or Susie

September 20, 2004

Wow is lucky, that test took me 6 hours. Apparently I have a slow

digestive system. They said to pay attention to how long it took for all of it

to

make its way out.. it took 11 hours.

September 20, 2004

Hi Michele:

I am glad to hear that Chris' test went well and that the radiologist

believes all is well. Forty-five minutes vs. two hours, wow, he must have a

fast

digestive tract!

Please let us know what the official report says. A huge relief to you all,

I know:)

Take care.

Patty

September 20, 2004

Michele,

So far the news seems to be good.Sounds like has a dynamo

metabolism(sp).

I hope and pray he just has some juicy intestines,lol and nothing more.

I can't believe how tall he has gotten and can still grow more.Whats most

important is that nothing is wrong and he just mayby needs alot more calories

then most.

I wish ice cream and cake would just run through me so quick it didn't stick

to problem areas.

I hope and pray the final results are as promising as the preliminary ones.

Hugs

Becki and 6 systemic

September 20, 2004

:

It seems like when Rob had the upper GI with small bowel follow through

it took about 2 hours for the test to be completed, though I am not sure

because my husband took him to that appointment.

There are a variety of things that could cause the rapid emptying of his

stomach. I am sure that the GI will discuss this with you. It does sound

like the radiologist didn't seem to think he had inflammatory bowel

disease? Keep us posted when you have the final results, ok?

and Rob 15 Spondy

On Mon, 20 Sep 2004 10:05:25 -0500 " Tepper, Michele "

<MTepper@...> writes:

Thanks for all the well wishes on Friday. The test went well. It seems

to the ped radiologist who performed the test that nothing seems to be

wrong. Which is a good thing. Of course, I do not have the official

results yet, but I am confident with this drs evaluation. One thing, the

test we were told should take about 2 hrs for the barium to move through

his system. We were out of there in 45 minutes about. He seems to have a

very fast metabolism and the barium got into his small bowel very

quickly. Perhaps that is what is making him so thin? I don't know, I am

just glad everything seems to be ok. I'll let you all know when I find

out anything else. I've got to try to catch up on all the emails! I was

off work both Thurs and Fri plus the weekend so I have lots to catch up

on. Thanks again for all the good thoughts everyone, Michele ( 17,

pauci & spondy)

September 21, 2004

-IM so happy the test went well, WOW, what a metabolism, I wish mine

were 1/2 as fast. Mine is so slow that everything that goes in gets

bored with the long journey and takes the short way out, usually to

my hips and thighs... ))) but I digress.....

I hope and pray that the " offical " news is just as great and that

you dont have anything to worry about ))

Hugs Helen and (7,systemic)

-- In , " Tepper, Michele " <MTepper@f...>

wrote:

> Thanks for all the well wishes on Friday. The test went well. It

seems

> to the ped radiologist who performed the test that nothing seems

to be

> wrong. Which is a good thing. Of course, I do not have the official

> results yet, but I am confident with this drs evaluation. One

thing, the

> test we were told should take about 2 hrs for the barium to move

through

> his system. We were out of there in 45 minutes about. He seems to

have a

> very fast metabolism and the barium got into his small bowel very

> quickly. Perhaps that is what is making him so thin? I don't know,

I am

> just glad everything seems to be ok. I'll let you all know when I

find

> out anything else. I've got to try to catch up on all the emails!

I was

> off work both Thurs and Fri plus the weekend so I have lots to

catch up

> on. Thanks again for all the good thoughts everyone, Michele

( 17,

> pauci & spondy)

>

September 21, 2004

Helen - I know exactly how you feel! Believe me, did not get his

metabolism from me (or my hubby for that matter!) LOL! I'm hoping the

results are good and I can relax on worrying about his weight. I'm just

glad he finally agreed to go. Wasn't as bad he thought it would be.

Michele

Re: Chris

-IM so happy the test went well, WOW, what a metabolism, I wish mine

were 1/2 as fast. Mine is so slow that everything that goes in gets

bored with the long journey and takes the short way out, usually to

my hips and thighs... ))) but I digress.....

I hope and pray that the " offical " news is just as great and that

you dont have anything to worry about ))

Hugs Helen and (7,systemic)

-- In , " Tepper, Michele " <MTepper@f...>

wrote:

> Thanks for all the well wishes on Friday. The test went well. It

seems

> to the ped radiologist who performed the test that nothing seems

to be

> wrong. Which is a good thing. Of course, I do not have the official

> results yet, but I am confident with this drs evaluation. One

thing, the

> test we were told should take about 2 hrs for the barium to move

through

> his system. We were out of there in 45 minutes about. He seems to

have a

> very fast metabolism and the barium got into his small bowel very

> quickly. Perhaps that is what is making him so thin? I don't know,

I am

> just glad everything seems to be ok. I'll let you all know when I

find

> out anything else. I've got to try to catch up on all the emails!

I was

> off work both Thurs and Fri plus the weekend so I have lots to

catch up

> on. Thanks again for all the good thoughts everyone, Michele

( 17,

> pauci & spondy)

>

September 26, 2004

Hi Chris!

The important thing to remember when going for a CI is " high hopes, low

expectations " . No matter how many other prelinguals have the same kind of

experience that does not mean yours will go that way. Actually I had high

hopes

and no expectations. On my hook up day, I really thought I was not going to

hear a thing. Imagine my thrill when I actually heard all the beeps for the

mapping....WOW!! It had been years since I had heard a beep! I was born

with a profound bi-lateral sensori nueral hearing loss which was not diagnosed

until I was 6 yrs old. From 6 until the age of 39, I wore a hearing aid in

my left ear and relied on lipreading to communicate. My speech discrimination

was 0% at my CI Candicacy appointment. I can't give you any scores since

being hooked up because I no longer get tested. I'd rather go by real life

experience than to go into some booth and get a score that I know does not

compute

with my real life experience. But, I can tell you, I am very glad I got

implanted!!! Hook up day was a very happy day for me as I recognized a lot of

environmental sounds and could hear my family's voices but not really understand

them without lipreading. I was shocked that paper makes noise!!! Who knew?

Speech discrimination didn't seriously kick in for me until about 3 months

after hook up day but I still rely on lipreading to communicate because that's

what I am used to. Today, 21 months after hook up day, I can talk on the

phone with people I know, I answer to my name when called, I am picking up more

and more without lipreading. It's just amazing what this CI has given me! My

hearing is better now than it has ever been in my whole life!

Good luck to you on your journey out of muffleness!

Patti

Surgery Day 11/25/02 (What A Day!)

Hook Up Day BWP 1/2/03 (A Happy Day!)

3G 1/31/03 (An Even Happier Day!)

October 12, 2004

Nice to hear from you.

Yup A new problem. I was told only 7 people worldwide have reported this

problem. Unlucky lottery winner!!! My ENT didn't know what to say to me. I

perused second opinions. It is felt that my eusthian tube is not working

properly. It stays open instead of opening and closing as it should. So air

is forced up to follow the wires of the receiver to balloon out the scalp

area. No one wants to correct this problem. It is felt it would only make

things worst. Meanwhile I feel like I have a bacterial trap. It's been a

nightmare for me. I'm not good at the wait and see what develops. Also as I

said before there are times I can't wear the headpiece due too puffiness.

Then I can't hear a blasted thing!! My insurance company will not pay for a

second CI.

_____

From: Lehfeldt [mailto:Lehfeldt@...]

Sent: Tuesday, October 12, 2004 5:57 PM

Subject: Re: Talbot OT

,

That is a new problem that I never heard, that could occur with a CI.

Your scalp pops out over the receiver area when you sneeze or blow

your nose -- that suggests there's a communication between the middle

ear to the fascial space where your implant is? Perhaps there is a

perforation where the middle ear/estauchion tube (sp?) or a defect in

a pathway? I hope that your ENT surgeon is aware of this

complication.

Thanks for sharing... your countryside is indeed charming. I like

driving through the Ogdensburg NY area instead of on the QEW when I

drive to Ottawa or Montreal from Rochester.

A bientot!

Chris

October 12, 2004