Re: and Beth

[Guest guest]

no no no its not a t-mic!!! im talking about a microphone located in

headpiece that ab bwp have and labelmic is an add on that hooks up to a

bwp ,again it is not a wireless device!!!

you better check ab website on bwp features! got it?

sewunique47 wrote:

> Still a little confused since mentioned the mic on clothing.

>

> So is the label mic a lapel mic? And is this wireless or connected

> to another part of the device in some area? Are you saying this is

> the T-mic built into the bwp or a regualr microphone that extends to

> the head piece. I'm confused as you can see. Is the T-mic only used

> on the BTE processor and not on BWP? Can the T-mic not be used on

> the ear level part of the processor for BWP? Also, where are the

> microphones that are on the BTE device? Are the mircorphones not up

> close to the top of ear for hearing and is that why there is a T-

> mic? What is the function of the other microphones if the T-mic is

> being used in the ear canal? Also, does the T-mic pick up all sounds

> that can't be filtered out in all hearing situations?

>

> I'm even more confused on this because I have no hearing that comes

> into my ear canal naturally as it was when I had normal hearing.

> With my microphones, I have two on the top, one on each side. I

> don't have any problems with phone conversations coming into the

> microphone or positioning the phone next to my ear. After one or two

> times, I just naturally put it where it has always been when I wore a

> hearing aid. So for me having worn a hearing aid for many years, I

> just became adjusted to holding the phone receiver to the mic. I

> don't consider myself as looking odd or strange doing so. Just by

> habit for me and not hard. Most people have no idea I wear a

> cochlear implant processor as it's not seen or noticed in anyway,

> even with my hair behind my ears.

>

> OK another question. Someone asked a question on another board

> recently asking if the earhook that is used for listening with FM

> system has to be removed and T-mic added to be able to talk on the

> phone?

>

> I know this is a lot of questions, and hope you can take the time to

> answer them.

>

> Dixie

>

>

>

[Guest guest]

Hi Dixie-

I’ll try to answer your questions-

>>I'm confused as you can see.  Is the T-mic only used

> on the BTE processor and not on BWP? <<

The T-mic can only be used with the BTE. It takes the place of the standard

earhook.

>> Can the T-mic not be used on

> the ear level part of the processor for BWP? <<

There has never been an earlevel microphone on any Advanced Bionics body

processor. There is an omnidirectional microphone in the headpiece, nothing

on your ear at all. There is a picture here (though the cable is not a

“normal” length. The cable is usually long unless you wear it in your shirt

pocket or bra or whereever)-

http://www.bionicear.com/tour/hi-res_sys_plat_sound.asp

>> Also, where are the

> microphones that are on the BTE device?  Are the mircorphones not up

> close to the top of ear for hearing and is that why there is a T-

> mic?  What is the function of the other microphones if the T-mic is

> being used in the ear canal? <<

The built-in BTE mic is positioned where a HA mic is positioned – right

behind the earhook/T-mic. It’s an omnidirectional forward facing microphone.

You can use the BTE mic the way you use a HA mic (on the phone etc.). The

T-mic was added because it’s a great idea – makes the phone very easy to

use, and gives a different sound quality (there are slight frequency

differences in the BTE mic and T-mic). Many people feel the sound of the

T-mic is more “natural”, they hear better in noise and use 100% T-mic all

the time. I use 50-50 (BTE and T-mic) except in some noisy situations where

I switch to my 3rd program with 100% T-mic.

>>Also, does the T-mic pick up all sounds that can't be filtered out in all

hearing situations? <<

I’m not sure what you mean by that.

>>After one or two

> times, I just naturally put it where it has always been when I wore a

> hearing aid.  So for me having worn a hearing aid for many years, I

> just became adjusted to holding the phone receiver to the mic.<<

If you use the Clarion BTE mic, you would hold it in a similar way. I was

never able to use a phone with my HA so to me, the natural way to hold a

phone is to pick it up and put it flat against my ear. It also blocks out

extraneous sound because you are covering the microphone totally.

I hope that helps Dixie!

Lorie

Clarion 1.2 5/96

NYC

[Guest guest]

Beth and ,

The kids' have a bad disease. They also are children who enjoy doing what

other kids do.

They need this as a kid growing up. You know kids in general adjust to more

than we give them credit for. Our kids try and keep up and worry about what

might happen more.

Hannah will be ok. She will experience what it like and will understand

what she can do. Girls talk more and the kids she is with may just get

educated by Hannah :-).

I found out with that I have to let her call the shots when she

was that age. The girls will call if they need you. Ummmm even today

will just call me and say what you doing? I will hear in her voice how she's

doing. :-). Remember ladies lolol Our girls are growing up. We have to let

them try new things and sit back and say ok they are being independant.

Robbin

[Guest guest]

Robbin:

You are right. Hannah made it all the way through her sleepover. (It was

really her first slumber party away from home). We've have parties and she's

done one-on-one sleepoveres, but never with so many kids. She had a good

time...I think too good of a time, as she was limping when I picked her up.

But gave her a hot shower and a long foot soak and she's feeling better. Low

key day, but that's ok.

We are really proud of her. She even said she feels silly for being so

stressed. The mom of the birthday girl is very aware of Hannah's problems and

had her sleep on the couch...Hannah loved that.

Robbin40@... wrote:

Beth and ,

The kids' have a bad disease. They also are children who enjoy doing what

other kids do.

They need this as a kid growing up. You know kids in general adjust to more

than we give them credit for. Our kids try and keep up and worry about what

might happen more.

Hannah will be ok. She will experience what it like and will understand

what she can do. Girls talk more and the kids she is with may just get

educated by Hannah :-).

I found out with that I have to let her call the shots when she

was that age. The girls will call if they need you. Ummmm even today

will just call me and say what you doing? I will hear in her voice how she's

doing. :-). Remember ladies lolol Our girls are growing up. We have to let

them try new things and sit back and say ok they are being independant.

Robbin

[Guest guest]

,

How is Aundrea doing? One thing I learned is the rest 2 days then a Big

fun day could mean a difference. Rest before a big day and day after.

use to sleep the whole day after a big fun day.

This is where I use to get so mad at this Disease. But I also learned

that kid's have to have

fun. Limiting the activity is hard. had 1 friend who grew up with

her. Neighbors from day 1. This little girl knew a lot about how did. I

think the best thing is to allow them to go places but also honestly tell

them ok let's have a rest day a day before.

The roller coaster ride. We have missed a lot of planned Family thing's

due to going around 's JRA. But in the long run it was worth it.

Have you had a sleep over?

Robbin

[Guest guest]

,

COOOL dressed in the 80's. Did they play the 80's music? and I

will go back to the 40's music. Then come forward. lololol. It's fun

remembering the dances. How's Aundrea doing tonight?

Robbin

[Guest guest]

Beth,

Glad to hear that Hannah was able to sleep over and that things went

ok for her. Aundrea went to the sleepover/b-day party but called

for me to come get her after she was there just over an hour.

She is just flaring right now. Lots of joint pain and as much as

she would like to keep up with her friends she just can't right now.

The birthday girl called today to see how Drea was feeling. Drea

had been laying in bed all day and I happened to have just laid down

next to her when the friend called. I have been helping her stand

and get to and from the bathtub. But when the friend calls to see

how she is Drea says " I'm good " . Thats so typical of Aundrea. She

may be open to letting people know that she has jra but when it

comes to letting people know that she is hurting or how she really

feels she just never talks about it. Of course, I am thinking that

her friend probably thinks that she just blew off her party and

wouldn't it be better to say sorry I couln't stay but I just feel

super lousy. Oh well, she has enough on her plate so I wont add to

it.

Its good that you had a low key day for Hannah. Thats some advice

that (marian's mom) gave me a long time ago that we kind of

try to stick to. Do your best to avoid Hannah having two busy days

in a row. Give a day to recouperate. It seems to help Drea

whenever we try to maintain that type of schedule.

Blessings,

(Aundrea 11 systemic jra)

> Beth and ,

> The kids' have a bad disease. They also are children who enjoy

doing what

> other kids do.

> They need this as a kid growing up. You know kids in general

adjust to more

> than we give them credit for. Our kids try and keep up and worry

about what

> might happen more.

> Hannah will be ok. She will experience what it like and will

understand

> what she can do. Girls talk more and the kids she is with may just

get

> educated by Hannah :-).

> I found out with that I have to let her call the shots

when she

> was that age. The girls will call if they need you. Ummmm even

today

> will just call me and say what you doing? I will hear in her voice

how she's

> doing. :-). Remember ladies lolol Our girls are growing up. We

have to let

> them try new things and sit back and say ok they are being

independant.

> Robbin

>

>

[Guest guest]

I hear ya Robbin. Drea looked more than grown up going off to the

party where they dressed up in 80's costumes. I had her hair all

teased and make-up on with a cute mini skirt. She looked like she

was 16. Kind of freaked me and her dad out. (I will have to post

the pics when I get them back.) But after chasing Miss Indpendence

around to two parties and dropping her off only to be called back

after an hour, I was completely wore out, she was crying and I

thought why can't Miss Independence just stay home and give this

tired mom a break! lol I don't even want to mention to her dad that

there is another slumber party inviation set for next Sat. ugh! I

think it can be his turn to do the running to go get her when she

calls! :-)

(Drea 11 systemic jra)-

-- In , Robbin40@... wrote:

>

> Beth and ,

> The kids' have a bad disease. They also are children who enjoy

doing what

> other kids do.

> They need this as a kid growing up. You know kids in general

adjust to more

> than we give them credit for. Our kids try and keep up and worry

about what

> might happen more.

> Hannah will be ok. She will experience what it like and will

understand

> what she can do. Girls talk more and the kids she is with may

just get

> educated by Hannah :-).

> I found out with that I have to let her call the shots

when she

> was that age. The girls will call if they need you. Ummmm even

today

> will just call me and say what you doing? I will hear in her voice

how she's

> doing. :-). Remember ladies lolol Our girls are growing up. We

have to let

> them try new things and sit back and say ok they are being

independant.

> Robbin

>

>

>

[Guest guest]

Hi , I am sorry to hear about Aundrea with her flare. I was

hoping that she would come out of it. Bummer, bummer, bummer. I

have no words of wisdom- other than either trying to wait it out, or

reaching for the prednisone bottle. Take care, (n, 17,

systemic)

On Aug 19, 2006, at 7:10 PM, sonia1md wrote:

> Beth,

>

> Glad to hear that Hannah was able to sleep over and that things went

> ok for her. Aundrea went to the sleepover/b-day party but called

> for me to come get her after she was there just over an hour.

>

> She is just flaring right now. Lots of joint pain and as much as

> she would like to keep up with her friends she just can't right now.

>

> The birthday girl called today to see how Drea was feeling. Drea

> had been laying in bed all day and I happened to have just laid down

> next to her when the friend called. I have been helping her stand

> and get to and from the bathtub. But when the friend calls to see

> how she is Drea says " I'm good " . Thats so typical of Aundrea. She

> may be open to letting people know that she has jra but when it

> comes to letting people know that she is hurting or how she really

> feels she just never talks about it. Of course, I am thinking that

> her friend probably thinks that she just blew off her party and

> wouldn't it be better to say sorry I couln't stay but I just feel

> super lousy. Oh well, she has enough on her plate so I wont add to

> it.

>

> Its good that you had a low key day for Hannah. Thats some advice

> that (marian's mom) gave me a long time ago that we kind of

> try to stick to. Do your best to avoid Hannah having two busy days

> in a row. Give a day to recouperate. It seems to help Drea

> whenever we try to maintain that type of schedule.

>

> Blessings,

> (Aundrea 11 systemic jra)

>

>

> > Beth and ,

> > The kids' have a bad disease. They also are children who enjoy

> doing what

> > other kids do.

> > They need this as a kid growing up. You know kids in general

> adjust to more

> > than we give them credit for. Our kids try and keep up and worry

> about what

> > might happen more.

> > Hannah will be ok. She will experience what it like and will

> understand

> > what she can do. Girls talk more and the kids she is with may just

> get

> > educated by Hannah :-).

> > I found out with that I have to let her call the shots

> when she

> > was that age. The girls will call if they need you. Ummmm even

> today

> > will just call me and say what you doing? I will hear in her voice

> how she's

> > doing. :-). Remember ladies lolol Our girls are growing up. We

> have to let

> > them try new things and sit back and say ok they are being

> independant.

> > Robbin

> >

> >

[Guest guest]

Hi ,

I have debated about whether or not to call the rheumy. I think

Aundea just finished her 5th week on mtx. but for two weeks she got

a very small dose because the nurse made a mistake while she was on

vacation. We go back to the rheumy the first week of sept. I guess

my options are starting her on some prednisone (as you mentioned) or

waiting a bit longer and if things don't get better then have her

dose of mtx increased. She is currently on 15 mg. weekly. Last

time she started mtx. she literally began improving by the 2nd week

and just got better every week.

Good news has been that the phenegren really seems to be helping

with her side effects! :-)

How is n doing? Has school started for her yet? Is she a

junior or senior? I bet you dont even want to think about her going

off to college! :-)

(Aundrea 11 systemic jra)-

-- In , Price <bc.price@...> wrote:

>

> Hi , I am sorry to hear about Aundrea with her flare. I

was

> hoping that she would come out of it. Bummer, bummer, bummer. I

> have no words of wisdom- other than either trying to wait it out,

or

> reaching for the prednisone bottle. Take care, (n,

17,

> systemic)

>

>

>

> On Aug 19, 2006, at 7:10 PM, sonia1md wrote:

>

> > Beth,

> >

> > Glad to hear that Hannah was able to sleep over and that things

went

> > ok for her. Aundrea went to the sleepover/b-day party but called

> > for me to come get her after she was there just over an hour.

> >

> > She is just flaring right now. Lots of joint pain and as much as

> > she would like to keep up with her friends she just can't right

now.

> >

> > The birthday girl called today to see how Drea was feeling. Drea

> > had been laying in bed all day and I happened to have just laid

down

> > next to her when the friend called. I have been helping her stand

> > and get to and from the bathtub. But when the friend calls to see

> > how she is Drea says " I'm good " . Thats so typical of Aundrea. She

> > may be open to letting people know that she has jra but when it

> > comes to letting people know that she is hurting or how she

really

> > feels she just never talks about it. Of course, I am thinking

that

> > her friend probably thinks that she just blew off her party and

> > wouldn't it be better to say sorry I couln't stay but I just feel

> > super lousy. Oh well, she has enough on her plate so I wont add

to

> > it.

> >

> > Its good that you had a low key day for Hannah. Thats some advice

> > that (marian's mom) gave me a long time ago that we kind of

> > try to stick to. Do your best to avoid Hannah having two busy

days

> > in a row. Give a day to recouperate. It seems to help Drea

> > whenever we try to maintain that type of schedule.

> >

> > Blessings,

> > (Aundrea 11 systemic jra)

> >

> >

> > > Beth and ,

> > > The kids' have a bad disease. They also are children who enjoy

> > doing what

> > > other kids do.

> > > They need this as a kid growing up. You know kids in general

> > adjust to more

> > > than we give them credit for. Our kids try and keep up and

worry

> > about what

> > > might happen more.

> > > Hannah will be ok. She will experience what it like and will

> > understand

> > > what she can do. Girls talk more and the kids she is with may

just

> > get

> > > educated by Hannah :-).

> > > I found out with that I have to let her call the shots

> > when she

> > > was that age. The girls will call if they need you. Ummmm even

> > today

> > > will just call me and say what you doing? I will hear in her

voice

> > how she's

> > > doing. :-). Remember ladies lolol Our girls are growing up. We

> > have to let

> > > them try new things and sit back and say ok they are being

> > independant.

> > > Robbin

> > >

> > >

[Guest guest]

:

How is Aundrea today? It really really really sucks that these kids have to

stress over things are supposed to be fun!

Hannah felt much better as the day wore on yesterday. We cleaned out her room

in anticipation of getting her old bedroom set out of storage. She is really

excited and we went on line last night and ordered a new bedroom set. It was a

good pick me up for Hannah.

This morning has been not too great. We went to church and Hannah had to get

up and walk out half way through the service because she was so sore & stiff.

There were elderly people there moving better than her. So if she can't make it

through church what the heck will happen when school starts.

Please tell Drea we are thinking of her.

sonia1md <sonia1md@...> wrote:

Beth,

Glad to hear that Hannah was able to sleep over and that things went

ok for her. Aundrea went to the sleepover/b-day party but called

for me to come get her after she was there just over an hour.

She is just flaring right now. Lots of joint pain and as much as

she would like to keep up with her friends she just can't right now.

The birthday girl called today to see how Drea was feeling. Drea

had been laying in bed all day and I happened to have just laid down

next to her when the friend called. I have been helping her stand

and get to and from the bathtub. But when the friend calls to see

how she is Drea says " I'm good " . Thats so typical of Aundrea. She

may be open to letting people know that she has jra but when it

comes to letting people know that she is hurting or how she really

feels she just never talks about it. Of course, I am thinking that

her friend probably thinks that she just blew off her party and

wouldn't it be better to say sorry I couln't stay but I just feel

super lousy. Oh well, she has enough on her plate so I wont add to

it.

Its good that you had a low key day for Hannah. Thats some advice

that (marian's mom) gave me a long time ago that we kind of

try to stick to. Do your best to avoid Hannah having two busy days

in a row. Give a day to recouperate. It seems to help Drea

whenever we try to maintain that type of schedule.

Blessings,

(Aundrea 11 systemic jra)

> Beth and ,

> The kids' have a bad disease. They also are children who enjoy

doing what

> other kids do.

> They need this as a kid growing up. You know kids in general

adjust to more

> than we give them credit for. Our kids try and keep up and worry

about what

> might happen more.

> Hannah will be ok. She will experience what it like and will

understand

> what she can do. Girls talk more and the kids she is with may just

get

> educated by Hannah :-).

> I found out with that I have to let her call the shots

when she

> was that age. The girls will call if they need you. Ummmm even

today

> will just call me and say what you doing? I will hear in her voice

how she's

> doing. :-). Remember ladies lolol Our girls are growing up. We

have to let

> them try new things and sit back and say ok they are being

independant.

> Robbin

>

>

[Guest guest]

Aundrea is still struggling. She has gotten so big for me to carry

and last night she said she just couldn't stand on her ankles. My

son says I'll carry her. He grabs her up and carries her all the

way upstairs to my room. Its so funny that as your kids grow up you

forget that they are strong. Here is over 6' 1 " and I forget

he is as strong as a grown man...Goodness, I need to start turning

more chores over to him! lol

Yes, I would much prefer to have the sleepovers at my house. Would

make everything a lot easier. But these recent parties have all

been birthday parties. So not a lot of options there. The one for

next Friday they are going to a pizza place and movies. Drea was

ready to just say no to going. I told her that maybe her dad,

brother and I would be in the mood for pizza and a movie and that we

could just coincidently go and be there if she needs to leave. We

will see. Friday is a long ways off and at this rate she is just

struggling to stand.

(Aundrea 11 systemic jra)

>

> ,

> How is Aundrea doing? One thing I learned is the rest 2 days

then a Big

> fun day could mean a difference. Rest before a big day and day

after.

> use to sleep the whole day after a big fun day.

> This is where I use to get so mad at this Disease. But I also

learned

> that kid's have to have

> fun. Limiting the activity is hard. had 1 friend who grew

up with

> her. Neighbors from day 1. This little girl knew a lot about how

did. I

> think the best thing is to allow them to go places but also

honestly tell

> them ok let's have a rest day a day before.

> The roller coaster ride. We have missed a lot of planned

Family thing's

> due to going around 's JRA. But in the long run it was

worth it.

> Have you had a sleep over?

> Robbin

>

>

>

[Guest guest]

Hi ,

After each passing week after about 6 weeks, we saw improvement in

n.

I am glad that the phenegren is working.

In the past with sleepovers, many times we would let n stay

until about 10-11, and then bring her home to sleep in her own bed.

Don't you hate this disease? It can make a mother feel so helpless.

The child will cry in pain, and there is nothing we can do. We can't

say, " Oh, let me give you some advil, or cough medicine to make you

feel better. " We can help them walk or use their hands, but we can't

make their pain go away. I think that is the killer for the parents.

n is doing very well. She has lots of energy. She will be a

senior next week, and we are starting the college process. If I had

to put money on it, I bet she will end up in CA for college. That's

not too bad. We can get to her quickly there.

She went to the rheumy last week for the first time to check on

arthritis, rather than a follow up to MAS. She will get the tip of

one of her fingers injected in the office next week. She will also

get an in depth lung test. Her lung capacity is quite decreased

since the MAS. She can't jog anymore. She gets winded and coughs.

Maybe, we will find out if it is damage from the MAS or being

intubated. Then the next day she will get a dexascan to check on her

bone mass. She has been on steroids off and on over the last seven

years. This last time in the hospital she got 1000mg a day for five

days and then we weaned from there. Talk about weaning from a high dose!

Our Oregon group remains busy. Two charitable organizations are

helping us. The American Legion just had an auction and the proceeds

go to our support group. The Eagles are having a big fundraiser and

hope to start a JRA camp in Oregon in a couple of years. CARRA is

also active here. We are having an auction in a model home where all

of the furnishings are being auction off at a catered event, and all

proceeds will go to CARRA.

Take care, (n, 17, systemic)

On Aug 20, 2006, at 7:38 AM, sonia1md wrote:

> Hi ,

> I have debated about whether or not to call the rheumy. I think

> Aundea just finished her 5th week on mtx. but for two weeks she got

> a very small dose because the nurse made a mistake while she was on

> vacation. We go back to the rheumy the first week of sept. I guess

> my options are starting her on some prednisone (as you mentioned) or

> waiting a bit longer and if things don't get better then have her

> dose of mtx increased. She is currently on 15 mg. weekly. Last

> time she started mtx. she literally began improving by the 2nd week

> and just got better every week.

>

> Good news has been that the phenegren really seems to be helping

> with her side effects! :-)

>

> How is n doing? Has school started for her yet? Is she a

> junior or senior? I bet you dont even want to think about her going

> off to college! :-)

>

> (Aundrea 11 systemic jra)-

>

> -- In , Price <bc.price@...> wrote:

> >

> > Hi , I am sorry to hear about Aundrea with her flare. I

> was

> > hoping that she would come out of it. Bummer, bummer, bummer. I

> > have no words of wisdom- other than either trying to wait it out,

> or

> > reaching for the prednisone bottle. Take care, (n,

> 17,

> > systemic)

> >

> >

> >

> > On Aug 19, 2006, at 7:10 PM, sonia1md wrote:

> >

> > > Beth,

> > >

> > > Glad to hear that Hannah was able to sleep over and that things

> went

> > > ok for her. Aundrea went to the sleepover/b-day party but called

> > > for me to come get her after she was there just over an hour.

> > >

> > > She is just flaring right now. Lots of joint pain and as much as

> > > she would like to keep up with her friends she just can't right

> now.

> > >

> > > The birthday girl called today to see how Drea was feeling. Drea

> > > had been laying in bed all day and I happened to have just laid

> down

> > > next to her when the friend called. I have been helping her stand

> > > and get to and from the bathtub. But when the friend calls to see

> > > how she is Drea says " I'm good " . Thats so typical of Aundrea. She

> > > may be open to letting people know that she has jra but when it

> > > comes to letting people know that she is hurting or how she

> really

> > > feels she just never talks about it. Of course, I am thinking

> that

> > > her friend probably thinks that she just blew off her party and

> > > wouldn't it be better to say sorry I couln't stay but I just feel

> > > super lousy. Oh well, she has enough on her plate so I wont add

> to

> > > it.

> > >

> > > Its good that you had a low key day for Hannah. Thats some advice

> > > that (marian's mom) gave me a long time ago that we kind of

> > > try to stick to. Do your best to avoid Hannah having two busy

> days

> > > in a row. Give a day to recouperate. It seems to help Drea

> > > whenever we try to maintain that type of schedule.

> > >

> > > Blessings,

> > > (Aundrea 11 systemic jra)

> > >

> > >

> > > > Beth and ,

> > > > The kids' have a bad disease. They also are children who enjoy

> > > doing what

> > > > other kids do.

> > > > They need this as a kid growing up. You know kids in general

> > > adjust to more

> > > > than we give them credit for. Our kids try and keep up and

> worry

> > > about what

> > > > might happen more.

> > > > Hannah will be ok. She will experience what it like and will

> > > understand

> > > > what she can do. Girls talk more and the kids she is with may

> just

> > > get

> > > > educated by Hannah :-).

> > > > I found out with that I have to let her call the shots

> > > when she

> > > > was that age. The girls will call if they need you. Ummmm even

> > > today

> > > > will just call me and say what you doing? I will hear in her

> voice

> > > how she's

> > > > doing. :-). Remember ladies lolol Our girls are growing up. We

> > > have to let

> > > > them try new things and sit back and say ok they are being

> > > independant.

> > > > Robbin

> > > >

> > > >

[Guest guest]

Sorry to hear that Aundrea is struggling. 's ankles have been

so stubborn. We recently had them injected and we are hoping that

puts an end to it. is so self-conscious already, especially

about limping. Growing up is really hard on its own without having an

illness that makes you stand out.

You really are a supportive mom! I hope Aundrea feels much better by

the end of the week!

Sophie

[Guest guest]

Sophie,

I certainly hope that the injections will help . I am sure

that procedure can't be fun to go through so I hope that it at least

does the job and gives her some relief.

Aundrea first became sick when she was just 7 years old. I can see a

big shift between being a 2nd grader and now being a 6th grader. Now

there is a whole the whole roller coaster of emotions and the stress

of that seems to only make things harder for her as far as flares.

Her social life much more important and right now I believe its

becoming painfully obvious to her that she really can't keep up with

her peers. She wears out so much faster and because she doesn't

really talk about her pain etc...they don't really understand what she

is going through. In fact the other night when she was at the

birthday party one of her girlfriends kept saying " you need to get

hyper, get crazy, your just being so quiet " . Aundrea was dealing with

so much pain that for her it was just an effort to try and " run "

around the house for the treasure hunt. What a pain to have to

explain why your not being a " hyper " 11 year old, in the end she just

chose to come home and go to bed.

Please make sure knows about the kids jra chat room. I am

sure that there are many of our kids that will benefit from developing

their own support group.

(Drea 11 systemic jra)

-- In , " slevindoski " <slevindoski@...> wrote:

>

> Sorry to hear that Aundrea is struggling. 's ankles have

been

> so stubborn. We recently had them injected and we are hoping that

> puts an end to it. is so self-conscious already, especially

> about limping. Growing up is really hard on its own without having

an

> illness that makes you stand out.

>

> You really are a supportive mom! I hope Aundrea feels much better

by

> the end of the week!

> Sophie

>

[Guest guest]

It's funny, I guess I never even thought of mentioning the chat room

to . Here I am getting all this support, and I didn't even

think to tell her about it! I think she will be like Drea and not

really share with others about how she is feeling. I already find

myself not telling people as much about her illness, b/c I feel like

she is a pretty private person and I should let her be. Now though I

am wondering if that will make her think she should keep it to herself.

I do make sure I tell the adults in her life what she is dealing

with. She seems so normal on the outside most of the time, that I

need to get it across to the school that she is on plenty of meds to

get her this way. For the most part, her kindergarten year last year

went pretty well. She had some transitioning problems, but at the

time her blood work showed her jra was very active and she had ankle

and hip problems. The teacher thought it was all separation anxiety,

but when she was in preschool and her arthritis was under control, she

would run away from me and into the classroom. She didn't even want me

to walk her in. I am hoping the transition into first grade is much

better. The school, of course, has not contacted me about a 504

meeting. I plan to write the teacher a letter and give it to her at

the open house before school starts. I have heard that the teacher's

husband has MS and I am hoping she is empathetic to LIndsay's problems.

Take care and I hope Aundrea feels better soon.

Sophie

[Guest guest]

Sophie - How long ago did you have 's ankles injected? They should feel

better pretty

quickly - not 100%, but better. Did they keep up her current meds after the

injection?

Tell her to hang in there - they do go through a lot, but they are so much

tougher than we

know!

Alia and Caroline, age 4, poly and uveitis

>

> Sorry to hear that Aundrea is struggling. 's ankles have been

> so stubborn. We recently had them injected and we are hoping that

> puts an end to it. is so self-conscious already, especially

> about limping. Growing up is really hard on its own without having an

> illness that makes you stand out.

>

> You really are a supportive mom! I hope Aundrea feels much better by

> the end of the week!

> Sophie

>

[Guest guest]

It was three weeks ago today. And they look so much better, not

swollen at all. That is why I am so worried. I am worried there is an

injury or even joint damage causing the limp. She has an appt today

with her rheumatologist. Maybe he will xray them. I'll update later.

How are Caroline's eyes today?

Sophie

[Guest guest]

Sophie,

I have always noticed that Aundrea becomes a lot more clingy when

she is not feeling well. She prefers to have me around and says

even though I can't take away her pain she just feels better knowing

that I am nearby. So, it makes since that would be less

excited about running off to join her classmates when she isn't

feeling so great.

is at an age where its probably harder to connect with

others online, and it would be easier if there was some sort of

support group/play group that she could attend. When Aundrea was

younger we lived in an area that didn't have any of those resources

and she just sort of accepted her illness and didn't really think

about the longevity of it.

Its really only been since this last flare that I have seen her

struggle more with being different from her peers. Mostly, its just

the fact that she doesn't have the energy that they have. She

misses more school and misses out on more activities.

I guess I think that it must be similar to when there is something

new going on in our life such as a new job, move, etc..You know how

everyone you meet will say " how is the job, new house " etc. Its

just their way of connecting to you. But when the topic is jra, and

its always there, then it becomes repetitive and annoying to always

talk about it. Not to mention that most people have no clue what it

is our kids deal with anyway...So, its no wonder that they would

downplay their pain or state that their fine...it makes it quicker

to move the conversation on to something else.

I have found that while Aundrea is more quiet with her " healthy "

friends she has been much more open to talking with peers that are

dealing with jra. I believe that the chat room is a great place for

drea to have her own vent sessions and to feel understood...

I hope that has a great school year. Be sure to get that

504 going. Don't wait on the school to take the first step, you just

need to ask who the 504 coordinator is and get things moving.

Blessings,

(Aundrea 11 systemic jra)-

-- In , " slevindoski " <slevindoski@...>

wrote:

>

> It's funny, I guess I never even thought of mentioning the chat

room

> to . Here I am getting all this support, and I didn't even

> think to tell her about it! I think she will be like Drea and not

> really share with others about how she is feeling. I already find

> myself not telling people as much about her illness, b/c I feel

like

> she is a pretty private person and I should let her be. Now

though I

> am wondering if that will make her think she should keep it to

herself.

>

> I do make sure I tell the adults in her life what she is dealing

> with. She seems so normal on the outside most of the time, that I

> need to get it across to the school that she is on plenty of meds

to

> get her this way. For the most part, her kindergarten year last

year

> went pretty well. She had some transitioning problems, but at the

> time her blood work showed her jra was very active and she had

ankle

> and hip problems. The teacher thought it was all separation

anxiety,

> but when she was in preschool and her arthritis was under control,

she

> would run away from me and into the classroom. She didn't even

want me

> to walk her in. I am hoping the transition into first grade is

much

> better. The school, of course, has not contacted me about a 504

> meeting. I plan to write the teacher a letter and give it to her

at

> the open house before school starts. I have heard that the

teacher's

> husband has MS and I am hoping she is empathetic to LIndsay's

problems.

>

> Take care and I hope Aundrea feels better soon.

> Sophie

>