update

[Guest guest]

,

We shall enjoy some mochas this weekend.

I am not familiar enough with FM systems to help. As to the overload, I

think the CI has built in prootection against such. And of course there is

always that off switch. LOL

*---* *---* *---* *---* *---*

It's always darkest before dawn. So if you're going to steal your neighbor's

newspaper, that's the time to do it.

& Gimlet (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/ NEW Home Page!

[Guest guest]

,

I can't tell you how thankful I was for my CI to be in the " off " position

the moment I heard that loud buzzing. LOL!

As for the FM system...I'm sure we'll find a solution soon. (My university

audi is going to contact Cochlear to see if they have any further

suggestions.) In the meantime, I still have Braille captioning or a tactile

interpreter. <smile>

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

Deafblind/Postlingual

BTE hearing aid user 20 years

Severe-profound hearing loss 10 years

[Guest guest]

,

Sounds like their system is at fault, not the CI. Bet no one else uses

it.

*---* *---* *---* *---* *---*

Borrow money from pessimists -- they don't expect it back.

--

& Gimlet (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/ NEW Home Page!

[Guest guest]

,

You're absolutely correct. The people who installed the system tested it and

said that it worked, but since there was no HoH student who was using it

before now, no one realized it wasn't working properly.

I'm really looking forward to trying the IR system. I had the opportunity to

try an infrared system 10 years ago at the AADB convention. Back then the

sound quality of IR systems left alot to be desired (it equated to the sound

of someone talking through a tine can), but it was still exciting

nevertheless -- especially to those of who've never used an FM or IR system

before!

Time to turn off the computer and hit the books again so I can enjoy the

weekend!

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

Deafblind/Postlingual

BTE hearing aid user 20 years

Severe-profound hearing loss 10 years

[Guest guest]

,

You do know that IR is line of sight, right? I am guessing this system

has its transmitter up high, on the ceiling.

Yeah go enjoy the weekend and we will do the same! LOL

*---* *---* *---* *---* *---*

What you do today, might burn your ass tomorrow.

& Gimlet (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/ NEW Home Page!

[Guest guest]

,

Yes, I do -- and I was told *that* can be one of the disadvantages to IR

systems. We think the motion sensors in the room might be interfering with

the signal being passed from the transmitter/mic to the receiver.

Have a great weekend! The weather here is beautiful, so my friends and I

decided to spend the afternoon down by the lake. Should be fun!

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

Deafblind/Postlingual

BTE hearing aid user 20 years

Severe-profound hearing loss 10 years

[Guest guest]

,

Isnt there a qualified business in Mikwaukee that sells to the HOH and

could help fix this? We have such a business in Portland and the guy knows

his stuff. When my FM system began to lose its performance, he changed the

channels til it worked properly again. He said one of the problems of older

FM systems is the frequency band they work on. The radio band is getting so

crowded these days, its hard to avoid interference sometimes.

Enjoy yourself, but dont forget us! LOL

*---* *---* *---* *---* *---*

We Would Be De-Lighted If You Sent In Your Bill.

However, If You Don't You Will Be.

--sign at the electric company

& Gimlet (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/ NEW Home Page!

[Guest guest]

,

Yes -- there is a well known and respected business here in Milwaukee that

sells products for the deaf and hard of hearing. I don't know why it didn't

occur to me to ask them for assistance. Great idea! I'll do that this week.

I had a great time down by the lake yesterday! One of my friends surprised

me by purchasing a beeping volleyball! Since she had a net and there were 6

of us, we decided to play several games with 3 of us per team. It brought

back alot of memories when I used to play beep ball (beep baseball) as a

child.

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

Deafblind/Postlingual

BTE hearing aid user 20 years

Severe-profound hearing loss 10 years

[Guest guest]

What neat friends you have, !

[Guest guest]

,

There yuh go. Hope that works out to everyone's satisfaction.

Beep beep beep BEEP! Oooooops. C'mon get up off the ground. The

ball is not that hard. LOL

*---* *---* *---* *---* *---*

I work 45 hours a week to be this poor.

& Gimlet (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/ NEW Home Page!

[Guest guest]

,

I know! <smile> Needless to say, I was pleasantly surprised! My friend found

the beep volleyball after stumbling upon an Internet site that sold products

for the blind. We had a great time on Saturday...so much fun, in fact, that

we might go down to the lakefront again this weekend if the weather is nice!

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

Deafblind/Postlingual

BTE hearing aid user 20 years

Severe-profound hearing loss 10 years

[Guest guest]

:

Its always good to hear from you. I hope that the Remicade kicks in soon

and that you feel much better.

How's college going?

and Rob 16 Spondy

On Thu, 6 Oct 2005 03:42:44 EDT bncknwurnumber@... writes:

Ok so I thought I'd give a little update. I have had my second Remicade

infusion and it went pretty good I haven't had any improvements yet but

I'm

hoping that I will soon. I ended up with a kidney infection right after

my second

infusion, took a ten day course of antibiotics, and although the other

stuff

cleared up my kidney region is still hurting pretty bad. I havent been

feeling very well recently. I finally saw my cardiologist and he wants me

to do the

holtier monitor thing again but I just haven't.. I will eventually. But

yeah

other then that I have just been working and going to school... waiting

for

Remicade to kick in. So yeah that's all that is new with me.. lol there's

my

little update

Love always

(JAS, 20)

[Guest guest]

,

It's good to hear from you but I wish it was better news. Hopefully

the remicade will kick in soon! What's the holtier monitor?

Blessings,

& (10-poly)

> Ok so I thought I'd give a little update. I have had my second

Remicade

> infusion and it went pretty good I haven't had any improvements

yet but I'm

> hoping that I will soon. I ended up with a kidney infection right

after my second

> infusion, took a ten day course of antibiotics, and although the

other stuff

> cleared up my kidney region is still hurting pretty bad. I havent

been

> feeling very well recently. I finally saw my cardiologist and he

wants me to do the

> holtier monitor thing again but I just haven't.. I will

eventually. But yeah

> other then that I have just been working and going to school...

waiting for

> Remicade to kick in. So yeah that's all that is new with me.. lol

there's my

> little update

>

> Love always

> (JAS, 20)

>

>

>

[Guest guest]

- hope that Remicade kicks in soon. Sorry about the infection.

Working and going to school probably take up all your time - you make

sure you get out and have some fun too!! Michele

Update

Ok so I thought I'd give a little update. I have had my second Remicade

infusion and it went pretty good I haven't had any improvements yet but

I'm

hoping that I will soon. I ended up with a kidney infection right after

my second

infusion, took a ten day course of antibiotics, and although the other

stuff

cleared up my kidney region is still hurting pretty bad. I havent been

feeling very well recently. I finally saw my cardiologist and he wants

me to do the

holtier monitor thing again but I just haven't.. I will eventually. But

yeah

other then that I have just been working and going to school... waiting

for

Remicade to kick in. So yeah that's all that is new with me.. lol

there's my

little update

Love always

(JAS, 20)

[Guest guest]

Helen - we have all gotten so busy in our lives that keeping up with the JRA

sites is sometimes difficult. I was so sorry to hear about . I hope

the remicade does the trick. How are you doing with all this. Hunter went

through an emotional stage a few weeks ago. She refused any of her medications

and broke down crying saying that " She didn't have arthritis. " If it isn't

the physical aspect of how this makes our kids feel - it is the blasted

emotional/mental. She is doing better these last two weeks - tonight Daddy took

her

to a Montgomery Gentry Concert. I did not go because I knew I would be the

" worrier all night " . Helen - I hope and pray you get some answers soon. If

there is anything I can do - let me know. Sandi Ken Hunter (6 Systemic)

[Guest guest]

hi helen,

i think that you should be happier with the remicade. i know we are

alot happier with it. altho we are only on the 3rd treatment and are

fining it not strong enough and are going to adjust the dose. but

over all tiffanie is a different kid with this medication; in a good

way. she is not as crankie because over all she hurts less. on the

enbrel she always had this odd sickly look... that is gone. dont get

me wrong she still hurts, but only in a coupple places, not alover

like when on the enbrel. enbrel just was not tuff enough for her.

I had also of stress on what to expect with the treatments... but i

found that i was stressing over nothing. they give tiffanie benadryl

and tylenol oraly before each treatment but also give her IV

steroids before they start the dose. then we sit there and watch

movies untill she is done. she brings her fav blankie and cridder. i

think the hardest thing about it is that i get very tired just

sitting there lol.... i cant stand doing " nothing " lol.... but i do

like that they draw the labs thru the IV so we do not have to get 2

pokes.

anyway, let us know how he does! if he has a game boy maybe have him

bring that... should keep him busy for a while:)

Tiffanie age4 systemic

>

> Hi All,

>

> I'm guilty of not paying too much attention to the list lately..

sorry Ill

> try to be a better listmember ))

>

> Nick saw his doctor today. His blood pressure is high... we have

no idea

> why. The good news is his weight is up 3lbs so that makes me a

little

> happier, although he didnt grow in height at all, again.

>

> The doctor feels that the enbrel is not working for like

it was in

> the begining. We talked long and hard about the pro's and cons of

what we

> can do and decided to move onto remicade. So will have

his 1st

> infussion next friday afternoon. He will have his last enbrel shot

on

> Monday.

>

> She has also decided that she would like to see a

geneticist (sp).

> His hypermobile joints seem to be getting " looser " and he now has

soo much

> popping and clicking when he moves the joints. She says this is

the tendons

> and ligaments rubbing. She just wants to make sure shes not

missing

> anything. As she put it, we know he has JRA, i just want to make

sure we are

> not missing something else. He's also having issues with any

little friction

> on his skin will cause his skin to blister. its like his skin is

super

> sensitive. He tried to do the monkey bars at school and managed 4

rungs

> before he couldnt go any further, but just doing this caused him

to have a

> blister on each palm. She says this is not normal.

>

> I'm feeling a little overwelmed with it all right now....

>

>

> Hugs Helen and (8,systemic)

[Guest guest]

Helen,

Hello! Sorry to hear that Nick is having these new issues. I hope

that they get it figured out quickly (and that it's nothing too bad)

and that the remicade does the trick for him.

Hugs & Blessings,

& (10-poly)

>

> Hi All,

>

> I'm guilty of not paying too much attention to the list lately..

sorry Ill

> try to be a better listmember ))

>

> Nick saw his doctor today. His blood pressure is high... we have

no idea

> why. The good news is his weight is up 3lbs so that makes me a

little

> happier, although he didnt grow in height at all, again.

>

> The doctor feels that the enbrel is not working for like

it was in

> the begining. We talked long and hard about the pro's and cons of

what we

> can do and decided to move onto remicade. So will have

his 1st

> infussion next friday afternoon. He will have his last enbrel shot

on

> Monday.

>

> She has also decided that she would like to see a

geneticist (sp).

> His hypermobile joints seem to be getting " looser " and he now has

soo much

> popping and clicking when he moves the joints. She says this is

the tendons

> and ligaments rubbing. She just wants to make sure shes not

missing

> anything. As she put it, we know he has JRA, i just want to make

sure we are

> not missing something else. He's also having issues with any

little friction

> on his skin will cause his skin to blister. its like his skin is

super

> sensitive. He tried to do the monkey bars at school and managed 4

rungs

> before he couldnt go any further, but just doing this caused him

to have a

> blister on each palm. She says this is not normal.

>

> I'm feeling a little overwelmed with it all right now....

>

>

> Hugs Helen and (8,systemic)

[Guest guest]

Helen,

I'm sorry Nick is having such a rough time. I'm glad the doctor is having the

other checked out. It's nice to have a doctor that looks at the whole picture,

not just zero in on the arthritis. What is the doctor going to do about his

blood pressure? Could it be from the meds? I sure hope you get answers and

peace of mind soon. Well at least as much peace of mind that you can get from

this disease!

Summer- Gabi 8 poly, Colten 11, (who asked me if he could have a mohawk

painted GREEN!)-7

Helen Burger <hburger64@...> wrote:

Hi All,

I'm guilty of not paying too much attention to the list lately.. sorry Ill

try to be a better listmember ))

Nick saw his doctor today. His blood pressure is high... we have no idea

why. The good news is his weight is up 3lbs so that makes me a little

happier, although he didnt grow in height at all, again.

The doctor feels that the enbrel is not working for like it was in

the begining. We talked long and hard about the pro's and cons of what we

can do and decided to move onto remicade. So will have his 1st

infussion next friday afternoon. He will have his last enbrel shot on

Monday.

She has also decided that she would like to see a geneticist (sp).

His hypermobile joints seem to be getting " looser " and he now has soo much

popping and clicking when he moves the joints. She says this is the tendons

and ligaments rubbing. She just wants to make sure shes not missing

anything. As she put it, we know he has JRA, i just want to make sure we are

not missing something else. He's also having issues with any little friction

on his skin will cause his skin to blister. its like his skin is super

sensitive. He tried to do the monkey bars at school and managed 4 rungs

before he couldnt go any further, but just doing this caused him to have a

blister on each palm. She says this is not normal.

I'm feeling a little overwelmed with it all right now....

Hugs Helen and (8,systemic)

[Guest guest]

Hey Helen,

I was wondering how Nick was doing...I even visited his website

recently to see if you had an update there! :-)

I'm sorry to hear that the enbrel didn't do the trick...I sure hope

that remicade will be the answer...all of sudden we have lots of

kids moving onto remicade...Its kind of sad that they just have to

keep moving on to the bigger drugs...but I sure hope that this will

help Nick and the others!

Weight gain is good, now if you could just stretch him a little! :-)

keep us posted on what the geneticist has to say...Thats a new

specialty for me...it will be interesting to hear his/her assessment!

Sorry, you guys had such a tough day...I hope it gets better soon!

God Bless,

(drea 10 sjra)---

In , " Helen Burger " <hburger64@h...> wrote:

>

>

> Hi All,

>

> I'm guilty of not paying too much attention to the list lately..

sorry Ill

> try to be a better listmember ))

>

> Nick saw his doctor today. His blood pressure is high... we have

no idea

> why. The good news is his weight is up 3lbs so that makes me a

little

> happier, although he didnt grow in height at all, again.

>

> The doctor feels that the enbrel is not working for like

it was in

> the begining. We talked long and hard about the pro's and cons of

what we

> can do and decided to move onto remicade. So will have

his 1st

> infussion next friday afternoon. He will have his last enbrel shot

on

> Monday.

>

> She has also decided that she would like to see a

geneticist (sp).

> His hypermobile joints seem to be getting " looser " and he now has

soo much

> popping and clicking when he moves the joints. She says this is

the tendons

> and ligaments rubbing. She just wants to make sure shes not

missing

> anything. As she put it, we know he has JRA, i just want to make

sure we are

> not missing something else. He's also having issues with any

little friction

> on his skin will cause his skin to blister. its like his skin is

super

> sensitive. He tried to do the monkey bars at school and managed 4

rungs

> before he couldnt go any further, but just doing this caused him

to have a

> blister on each palm. She says this is not normal.

>

> I'm feeling a little overwelmed with it all right now....

>

>

> Hugs Helen and (8,systemic)

>

[Guest guest]

Helen,

Hang in there hun!

You have a great rheumy who is just wanting to check all avenues to get

Mr.Nick feeling better.

I wish you all the luck in getting some answers and will be praying the

Remicade does the trick.

Love and hugs

Becki and 7 systemic

[Guest guest]

-,..

I hope the remicade kicks in soon for you and you start to reap the

benefits...

hugs Helen and (8,systemic)

-- In , bncknwurnumber@a... wrote:

>

> Ok so I thought I'd give a little update. I have had my second

Remicade

> infusion and it went pretty good I haven't had any improvements

yet but I'm

> hoping that I will soon. I ended up with a kidney infection right

after my second

> infusion, took a ten day course of antibiotics, and although the

other stuff

> cleared up my kidney region is still hurting pretty bad. I havent

been

> feeling very well recently. I finally saw my cardiologist and he

wants me to do the

> holtier monitor thing again but I just haven't.. I will

eventually. But yeah

> other then that I have just been working and going to school...

waiting for

> Remicade to kick in. So yeah that's all that is new with me.. lol

there's my

> little update

>

> Love always

> (JAS, 20)

>

>

>

[Guest guest]

-...

Im glad that the remicade is helping Tiff.. im not too worried about

it. Im sure he will do fine and if it doesnt work, then we move onto

something else. So, we have nothing to lose trying it and everything

to gain.

Which remind me, i have to call my insurance to make sure theres not

some more hoops we have to jump though before he has it...

hugs Helen and (8,systemic)

-- In , " " <tiffaniesmom01@y...> wrote:

>

> hi helen,

>

> i think that you should be happier with the remicade. i know we

are

> alot happier with it. altho we are only on the 3rd treatment and

are

> fining it not strong enough and are going to adjust the dose. but

> over all tiffanie is a different kid with this medication; in a

good

> way. she is not as crankie because over all she hurts less. on the

> enbrel she always had this odd sickly look... that is gone. dont

get

> me wrong she still hurts, but only in a coupple places, not alover

> like when on the enbrel. enbrel just was not tuff enough for her.

>

> I had also of stress on what to expect with the treatments... but

i

> found that i was stressing over nothing. they give tiffanie

benadryl

> and tylenol oraly before each treatment but also give her IV

> steroids before they start the dose. then we sit there and watch

> movies untill she is done. she brings her fav blankie and cridder.

i

> think the hardest thing about it is that i get very tired just

> sitting there lol.... i cant stand doing " nothing " lol.... but i

do

> like that they draw the labs thru the IV so we do not have to get

2

> pokes.

>

> anyway, let us know how he does! if he has a game boy maybe have

him

> bring that... should keep him busy for a while:)

>

>

> Tiffanie age4 systemic

>

>

> >

> > Hi All,

> >

> > I'm guilty of not paying too much attention to the list lately..

> sorry Ill

> > try to be a better listmember ))

> >

> > Nick saw his doctor today. His blood pressure is high... we have

> no idea

> > why. The good news is his weight is up 3lbs so that makes me a

> little

> > happier, although he didnt grow in height at all, again.

> >

> > The doctor feels that the enbrel is not working for

like

> it was in

> > the begining. We talked long and hard about the pro's and cons

of

> what we

> > can do and decided to move onto remicade. So will have

> his 1st

> > infussion next friday afternoon. He will have his last enbrel

shot

> on

> > Monday.

> >

> > She has also decided that she would like to see a

> geneticist (sp).

> > His hypermobile joints seem to be getting " looser " and he now

has

> soo much

> > popping and clicking when he moves the joints. She says this is

> the tendons

> > and ligaments rubbing. She just wants to make sure shes not

> missing

> > anything. As she put it, we know he has JRA, i just want to make

> sure we are

> > not missing something else. He's also having issues with any

> little friction

> > on his skin will cause his skin to blister. its like his skin is

> super

> > sensitive. He tried to do the monkey bars at school and managed

4

> rungs

> > before he couldnt go any further, but just doing this caused him

> to have a

> > blister on each palm. She says this is not normal.

> >

> > I'm feeling a little overwelmed with it all right now....

> >

> >

> > Hugs Helen and (8,systemic)

>

[Guest guest]

--Sandi..

its good to hear from you... long time no posties!! ))

Im sorry Hunter went though some rough patches. Nick does the same,

refuses his meds, tells me hes " all better " and doesnt need them any

more. It's either that or, " whats the point, they dont work " its sad

to see our kids like this.

hang in there

hugs Helen and (8,systemic)

- In , deerhuntert6@a... wrote:

>

> Helen - we have all gotten so busy in our lives that keeping up

with the JRA

> sites is sometimes difficult. I was so sorry to hear about

. I hope

> the remicade does the trick. How are you doing with all this.

Hunter went

> through an emotional stage a few weeks ago. She refused any of

her medications

> and broke down crying saying that " She didn't have arthritis. " If

it isn't

> the physical aspect of how this makes our kids feel - it is the

blasted

> emotional/mental. She is doing better these last two weeks -

tonight Daddy took her

> to a Montgomery Gentry Concert. I did not go because I knew I

would be the

> " worrier all night " . Helen - I hope and pray you get some

answers soon. If

> there is anything I can do - let me know. Sandi Ken Hunter (6

Systemic)

>

>

>

[Guest guest]

-Hi summer...

good to hear form you... the doctor was going to recheck his blood

pressure at the end of the appt and of course we got chatting and

forgot.

Im sure it will be checked during his infussion next week..Im sure

it was just one of those things and nothing to be concerned about.

hugs Helen and (8,systemic)

-- In , summer garcia <remmussing@y...>

wrote:

>

> Helen,

> I'm sorry Nick is having such a rough time. I'm glad the doctor

is having the other checked out. It's nice to have a doctor that

looks at the whole picture, not just zero in on the arthritis. What

is the doctor going to do about his blood pressure? Could it be

from the meds? I sure hope you get answers and peace of mind soon.

Well at least as much peace of mind that you can get from this

disease!

> Summer- Gabi 8 poly, Colten 11, (who asked me if he could

have a mohawk painted GREEN!)-7

>

> Helen Burger <hburger64@h...> wrote:

>

> Hi All,

>

> I'm guilty of not paying too much attention to the list lately..

sorry Ill

> try to be a better listmember ))

>

> Nick saw his doctor today. His blood pressure is high... we have

no idea

> why. The good news is his weight is up 3lbs so that makes me a

little

> happier, although he didnt grow in height at all, again.

>

> The doctor feels that the enbrel is not working for like

it was in

> the begining. We talked long and hard about the pro's and cons of

what we

> can do and decided to move onto remicade. So will have

his 1st

> infussion next friday afternoon. He will have his last enbrel shot

on

> Monday.

>

> She has also decided that she would like to see a

geneticist (sp).

> His hypermobile joints seem to be getting " looser " and he now has

soo much

> popping and clicking when he moves the joints. She says this is

the tendons

> and ligaments rubbing. She just wants to make sure shes not

missing

> anything. As she put it, we know he has JRA, i just want to make

sure we are

> not missing something else. He's also having issues with any

little friction

> on his skin will cause his skin to blister. its like his skin is

super

> sensitive. He tried to do the monkey bars at school and managed 4

rungs

> before he couldnt go any further, but just doing this caused him

to have a

> blister on each palm. She says this is not normal.

>

> I'm feeling a little overwelmed with it all right now....

>

>

> Hugs Helen and (8,systemic)

>

>

>

>

>

[Guest guest]

Hi Helen, glad to hear gained a few lbs and sory to hear about this

blistering issue now. I don't get the blisters to the extent that

does, but I do experience skin irritation and blistering

accompanied with extreme itchyness. For me however it is primarily in my

fore arms. The icthing gets so bad at ties that I can not refrain from

scratching, often causing my sking to bleed.

As for lack of growth, well I know how hard it is to be so much

short than all the other guys in class and all, but whether he is 5 ft of

7 ft. He's a gaint in the hearts of those who love him and all of us here

too, think he is as well.

hplta

Rusty ( now a 5 ft. package of TNT) lol