a

[Guest guest]

Yes it is.. talk to you soon too!

a

--- RobJoyceand4kids@... wrote:

> Yes, I am still on instant messenger...my screen

> name is

> RobJoyceand4kids...is your screen name shoutjoy??

> Let me know. Talk with you

> soon. Joyce

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

You know.. alot of people think that everything changes with sizes. That is not

necessarily so. I hope it is for some. There are alot of inner voices and

negative beliefs that need to be dealt with. If my weight problem was due to

just eating too much and I had a fantastic attitude and nothing ever bothered me

weight related, then I suppose size would be the answer to all problems, but I " m

just not made that way. I hope it is for you as you seem to think it is. I

hope you find that magic size that makes everything wonderful. No hard

feelings, but size isn't everything... at least for me.

aW

MGB 5/28/00

214/115ish

a

a,

What is it about us that makes un innately unable to accept that where we

are is a good place to be. A size 4 is a dream come true for many people.

For many it is an impossible dream. For some a size 14 is a dream come true.

Or an 18.

But when you complain about being a size 4 it makes me wonder what it is

going to take to make you happy. I am sure others are thinking the same,

that they would love to be that small a size and why in the world you would

complain about it. Dag girl, be happy, you could be a size 32 and

suffering. Ya know?

Rejoice in the joy of the freedom from obesity. It is a grand place to be,

no matter what the size. Attitude of gratitude goes a long way when you

feel sorry for yourself.

Cheryl

[Guest guest]

a, on a serious note, you have posted a lot of issues that you are

depressed about. Being a woman who has suffered from depression for most of

my life and have been treated for it for over 20 years, I am thinking that

maybe you need some help? I am very serious about this.

Re: a

You know.. alot of people think that everything changes with sizes. That is

not necessarily so. I hope it is for some. There are alot of inner voices

and negative beliefs that need to be dealt with. If my weight problem was

due to just eating too much and I had a fantastic attitude and nothing ever

bothered me weight related, then I suppose size would be the answer to all

problems, but I " m just not made that way. I hope it is for you as you seem

to think it is. I hope you find that magic size that makes everything

wonderful. No hard feelings, but size isn't everything... at least for me.

aW

MGB 5/28/00

214/115ish

a

a,

What is it about us that makes un innately unable to accept that where we

are is a good place to be. A size 4 is a dream come true for many people.

For many it is an impossible dream. For some a size 14 is a dream come

true.

Or an 18.

But when you complain about being a size 4 it makes me wonder what it is

going to take to make you happy. I am sure others are thinking the same,

that they would love to be that small a size and why in the world you

would

complain about it. Dag girl, be happy, you could be a size 32 and

suffering. Ya know?

Rejoice in the joy of the freedom from obesity. It is a grand place to be,

no matter what the size. Attitude of gratitude goes a long way when you

feel sorry for yourself.

Cheryl

[Guest guest]

yea, I have started on the hormone patch which is one step and working on

others, thanks for not thinking I'm ungrateful about my achievements, I am!!!!

aW

MGB 5/28/00

214/115ish

a

a,

What is it about us that makes un innately unable to accept that where we

are is a good place to be. A size 4 is a dream come true for many people.

For many it is an impossible dream. For some a size 14 is a dream come

true.

Or an 18.

But when you complain about being a size 4 it makes me wonder what it is

going to take to make you happy. I am sure others are thinking the same,

that they would love to be that small a size and why in the world you

would

complain about it. Dag girl, be happy, you could be a size 32 and

suffering. Ya know?

Rejoice in the joy of the freedom from obesity. It is a grand place to be,

no matter what the size. Attitude of gratitude goes a long way when you

feel sorry for yourself.

Cheryl

[Guest guest]

I am so sorry to read that you won't be making the picnic. I was

looking forward to seeing you again. I will try to take lots of

pictures tto put on line for you to see.

Hugs,

Pat Lyle

[Guest guest]

Thanks Pat HUGS!!

aW

Re:a

I am so sorry to read that you won't be making the picnic. I was

looking forward to seeing you again. I will try to take lots of

pictures tto put on line for you to see.

Hugs,

Pat Lyle

[Guest guest]

a...may I ask what stage you are in and are you going to do treatment?

When do they find out your geno type? I've not heard anything about that

from my doctor......hugs....judy

[Guest guest]

a...may I ask what stage you are in and are you going to do treatment?

When do they find out your geno type? I've not heard anything about that

from my doctor......hugs....judy

[Guest guest]

Hi Barbara -

I'm sorry that you are recently experiencing increased pain.

Have you taken x-rays? What do your doctors say? Are you planning

on revision surgery? (You probably have shared this already and if

so, refer me to the correct posting.) If the pain is intolerable and

you can't see spending the rest of your life like this, then surgery

should be considered. Anyway, thanks for your concern about me.

a

> Hi a, I think in my compassion for you and your continued

problems I

> just thought perhaps one of the other doctors at UCSF might have an

answer.

> You're right that you would not be a candidate for more extensive

surgery and

> you seem to have confidence in the doctor you have. I'm glad he

sees your

> fusion as healing well. You are an inspiration to all of us ! I

wish I knew

> something you could do for the additional maladies. Perhaps someone

else on this

> site will.

>

> In my own case I was fused as a child for a double curve of about

75 degrees

> each. Though it was 1960 the doctors did not use any hardware and

only used

> bone. They simply stopped the progression right where it was --

didn't improve

> the curves. I am 55 and have led a very active life without pain

until the

> last few years. When I came out of the hospital after a

hysterectomy 2 years ago

> I began to have constant pain that never lets up. I just use all

sorts of

> distractions to deal with it. Because I am so functional and

active, I think the

> revision surgeons don't believe I need the surgery right now. I can

tell you

> that should this pain persist and get worse -- I will have to do

something.

> It is exhausting to deal with the pain never going away. I

recently wrote a

> post to this site about the coping mechanisms I use. Many days are

good and

> then there are those that are not. I do seem to find joy in each

day though.

>

> I've enjoyed getting to know each new member here and appreciate

your sharing

> with us a. You will find much encouragement and some

practical tips

> too. Stay in touch and let us know how you are doing. Barbara

[Guest guest]

Hi Alice

Thanks for the wonderful support. I truly need that now. I am in Va. but I

do wish I could attend the Jubilee. It sounds like that is where I need to be

with my little girl. I am scared. I have never been this scared in my life.

I almost lost her when she was born. She was in the Newborn Int. Care Unit

(NICU) for a month. I've never gotten over that even though she is turning 5.

I guess I am a little sensitive to her needs and putting her thru more

medical adventures..

I've been told by several professionals there have been cases where the

implant doesn't work. I guess that is why I've been fighting the idea of

implanting my daughter. But the more I read stories like Jeannes and others

especially

kids hearing frogs sing, and other conversations behind them makes my heart

bleed for her. I feel like I am depriving her yet there are those on times

when she hears great and I smack myself forever thinking of implanting her. I

guess the implant would give her consistency. What is the normal dB in all

freq. the implant gives or does it vary?

Yes, she gets speech therapy and she started a TC class for the HI this past

Aug..Her HI teacher uses sign in english order. She has been picking up on

signs but no where near fluent. I'm trying to learn sign but it is difficult

for me (kinda like trying to teach an old dog a new trick). Her HI teacher

advised me the other day she will be going to her local school for K with an aid

interpreter starting this August 2004. I am worried that will not be

successful there due to the fluctuations in her HL and not having a signing

teacher.

A reg. teacher doesn't know how to give visual clues either. She has

Auditory Neuropathy which the nerve is damaged and fluctuates. Often what the

brain receives is a scrambled message.... Another reason why I think she will

need the implant for school purposes in a reg. classroom.... Cognitively she is

advanced and basically that is because I have worked with her so much from the

time she was born in a one on one quiet situation. Socially she is delayed

in my opinion.

Thanks for your wonderful support here and letting me share my heartaches

with you this morning.

a

[Guest guest]

In a message dated 1/19/04 7:14:03 AM Pacific Standard Time,

windyhilltop687@... writes:

I feel like I am depriving her yet there are those on times

when she hears great and I smack myself forever thinking of implanting her.

I

guess the implant would give her consistency. What is the normal dB in all

freq. the implant gives or does it vary?

Sorry for stepping in. I was born deaf, never had hearing above 750 htz

(high pitches) all my life.....however had around 95dB hearing in lower pitches.

Once implanted....... i have NO regret, I realized that i am just as deaf as i

was before implanted. However once activated...... I am " hearing too much " .

Imagine me, a 46 y.o. never hearing a bird and suddenly I am with NO CLUE as

to what i was hearing.

You asked about dB,, i dont know about " normal " but i asked my audie about

it just last week, he is estimating that I am hearing at 25dB at all

frequiencies. I was told about 30 is the norm at first. We will know for sure

where i

stand when i have my hearing test in 2 weeks. The way i understand is, 25 to

30dB is equal to mild hearing loss.

You asked about consistency, one of nice thing about it, once implanted, you

never have to worry about failing hearing loss as most of us endure as we grow

older. Many children who was born deaf or hard of hearing lose it quite

fast. I am one of few who didn't lose hearing as I got older.

Stop smacking yourself, there is no right or wrong.

Lee

Looking for a gift or deco for your home? Check it out at www.lesanna.com

[Guest guest]

Thanks Lee,

I had to laugh for the wonderful advice " stop slapping yourself " . I think it

is a mommie thing!

I've been following your posts and so glad to hear you are doing so well.

a

[Guest guest]

Thanks Alice I belong to the AN group. Jake is a very cute little boy. I

know Elaine is proud.

a

[Guest guest]

Hi a,

Please don't hesitate to ask all the questions you want...over and over

again! That is what we are here for: to help you make the best decision for

your

daughter.

The rate of implant failure is something like 1%. All medical devices

have some kind of failure rate but it is very low for the implant. Cochlear

stand behind its implant when it fails as well as standing behind all the

external parts as well. I could not be happier with customer service. (Because

of

this, I agreed to be a volunteer and stay on these forums to help people

whenver I can.) If a person is not eligible to receive an implant due to a

certain

type of hearing loss then the surgeon would know this before the surgery

because there is a battery of tests to go through first.

I got my implant at age 39 and I began to lose my hearing when I was 12.

I wore hearing aids since I was 15. My hook-up was not fun at all! I did

not understand anything with the implant for a few months so I had to continue

lipreading and using whatever residual hearing I had in the other ear. I have

always assumed though that I would have acclimated to the device a lot faster

had I not had any residual hearing. I didn't need any therapy at all but then

again I was old enough to decide for myself how I wanted to work at relearning

how to hear.

Please continue to ask away!

N24C

2000

In a message dated 1/19/2004 8:58:55 AM Eastern Standard Time,

windyhilltop687@... writes:

I'm really scared because I know the implant is gonna kill

one ear and both work half way descent making this a difficult decision.

First, I'm told the implant doesn't work in some cases. Do you/anybody know

what those particular situations were? Another medical problem? A type of

HL?

Implant failure?

Second, you stated you have been wearing HA since K around the same age as my

daugther. How old were you when you chose the implant? At hookup did you

automatically hear/understand since you did have use of your aids or did you

need therapy? I know every person is different but I am curious how much

therapy you needed if any at all....

Sorry for asking so many questions but I am really scared for my daughter and

want to make the best decision for her that I can.

Thanks

a

[Guest guest]

Here's one story I found online - and you may have already read these - about a

young boy implanted who had auditory neuropathy.

http://auditoryneuropathy.tripod.com/ourjourney.html

I can appreciate your fears as I have two grandchildren who spent their first

weeks in the NICU and we almost lost both of them. It's scary and creates a

very special bond between you and the child. You never really get over the

fears. That vision stays with you no matter how old they get - it seems.

Good luck with this as I know it is a huge decision. We're here and will

provide whatever information you need as long as we can.

Alice

From: windyhilltop687@...

Hi Alice

Thanks for the wonderful support. I truly need that now.

[Guest guest]

In a message dated 1/19/2004 11:57:28 AM Pacific Standard Time,

Ci92000@... writes:

Do you/anybody know

what those particular situations were? Another medical problem? A type of

HL?

Implant failure?

a.....I had a previous failed implant long ago. This was back in 1985

when they were still considered " experimental " . Mine failed due to the device

being defective. It took me a long time before getting a second implant.

Right now, being totally deaf, I can talk on the phone absolutely

normally......voices sound like they used to. I never used a hearing aid and

lost my hearing

overnight.....I had normal hearing and woke up deaf one morning. I am still

blown away with this technology. It has been 18 months for me with my CI now

and it's almost unreal. So many people who were hearing aid users and now have

CI's tell me they hear so much better now with the CI than they ever did with

a hearing aid.

We go through life without guarantees......there is no such thing as a 100%

guarantee with a CI. We get them with hope and most of us are granted a

medical miracle. There will be an occasional rare device failure....it happens

and

the CI will be replaced. All the CI companies have wonderful guarantees and

support systems in place. Your daughter will need to learn to hear with her

CI and there will be a rehabilitation support team working with her.....just

like for the other children with CI's.

The ear I " gave up " to get this CI was dead......and had had no hearing in

over 30 years. I have been told that those who still have some residual hearing

in the implanted ear do the best with a CI. This could possibly be the best

possible situation for your daughter.

Make a list of questions.....the more the merrier! I am a Clarion CII, High

Resolution, Auria user (Advanced Bionics) and will be more than happy to

answer any specific questions you might have about Clarions.

Deb H

[Guest guest]

In a message dated 1/19/2004 3:46:35 PM Pacific Standard Time,

trudicoakley@... writes:

I have been leaning towards the Clarion device.

However my surgeon wants to look into the Nucleus

because there may be a remote chance of risk to my

sense of balance, given that I am only using one ear

for balance. He thinks the Nucleus might offer a

slight edge due to gentler and more flexible

implantantion technique.

Trudi.....Glad I was able to give you a better outlook! Far as which device

goes....I guess that is up to you and your surgeon. I have a very severe

form of vertigo called oscillopsia and balance issues played a big part of my

pre-op testing. I had to have an ENG test before I was able to choose an ear

for surgery. Nothing changed with my vertigo since having the CI surgery.....it

did not get better or worse....my surgeon agreed with my choice of Clarion.

I know of one person with balance problems who has MedEL and is also doing

very nicely.

All the devices work well.......the important thing is getting your CI,

getting hooked up, and then getting the rehab and practice you will need. You

might be one of the lucky ones that have amazing hearing on hookup day........or

be like most people and have weird and wacky hearing at first (Micky Mouse on

helium voices!) .....keep in mind it gets better as your brain learns to adapt.

One thing for sure......you are in for the experience of your life!!

Getting back something as precious as hearing is truly a humbling experience. :

)

Deb H

[Guest guest]

I appreciate the difficulty of the decision... or at least i think i do... but

do CIs help with nerve deafness?

windyhilltop687@... wrote:

I've been told by several professionals there have been cases where the implant

doesn't work. I guess that is why I've been fighting the idea of implanting my

daughter...

....She has Auditory Neuropathy which the nerve is damaged and fluctuates. Often

what the brain receives is a scrambled message....

---------------------------------

Personals

- New people, new possibilities. FREE for a limited time!

[Guest guest]

I've been told that the CI improves the hearing world of those with AN. I'm

still learning and reading. There are stories where it has helped children

with AN.

a

[Guest guest]

Alison,

Yes...CI's do help a person with nerve deafness.

Alice

Re: a

I appreciate the difficulty of the decision... or at least i think i do... but

do CIs help with nerve deafness?

windyhilltop687@... wrote:

I've been told by several professionals there have been cases where the

implant doesn't work. I guess that is why I've been fighting the idea of

implanting my daughter...

...She has Auditory Neuropathy which the nerve is damaged and fluctuates.

Often what the brain receives is a scrambled message....

---------------------------------

Personals

- New people, new possibilities. FREE for a limited time!

[Guest guest]

you may well be right- i don't know all that much about the new implants

(yet)... my apologies for sheer ignorance!

-Alison

windyhilltop687@... wrote:

I've been told that the CI improves the hearing world of those with AN. I'm

still learning and reading. There are stories where it has helped children with

AN.

a

---------------------------------

Personals

- New people, new possibilities. FREE for a limited time!

[Guest guest]

In a message dated 01/21/2004 1:01:43 AM Eastern Standard Time,

ailisaun@... writes:

> my apologies for sheer ignorance!

>

Alison, no apology needed here. You made me question my knowledge and that

is a good thing.

a

[Guest guest]

Hi a,

I know what you mean when you talk about looking into the " circus

mirror " at times. I still see myself as fat...really fat. I'm worrying about

my

size 10's getting a little tight when in the " old days " I couldn't hardly get

my behind into a size 26...go figure!! When I tell the ladies I work with

that I'm gaining weight...they just laugh at me. I'm determined I'm going to

lose this 20 pounds....keep your fingers crossed. Let's do keep in

touch....Marie

[Guest guest]

Thanks Lynn. I have to agree that age is a number. How are you feeling?

I'm sorry your insurance won't cover the remicade. Can you appeal it since

remicade is done by infusion?

a

>

> Dearest a,

> I am sorry I missed your birthday. I hope you had a special day.

> Reading your post it looks like you did. Turning fifty is wonderful.

> When I turned fifty I just thought what a blessing it was, as so many

> don't get to that point. Age is just a number, nothing more.

> Again Happy Belated Birthday. You are special and I hope your day

> was also special.

> Love Lynn (MeMom)

>

>

>

>

>

[Guest guest]

Hi a,

I don't think I can appeal the decision. My insurance plan only pays for

generic drugs and remicade is a brand name. I'm not too upset by it, I just

feel I wasn't meant to have it.

I'm okay, trying to stay busy. I think the last two weeks have been so hard

since the death of my brother. It is harder now than it was four weeks ago. I

miss not getting his emails. He would send me notes, says he was just checking

in and wanted me to know he loved me. I miss him so much. Some friends of his

are suppose to be getting together a beef and ale to help his wife. My brother

couldn't get life insurance any were. He was so young with the first heart

attack and wasn't covered at the time. I hope it all works out for her, my

sister in law is special.

Hope you are feeling okay. Glad you missed the hurricane. My brother lives in

Key West and although they missed the worst of the storm, my sister was very

scared. She said next time, no matter what they leave. They stayed at their

home on the third floor.

Lynn

a54 wrote:

> Thanks Lynn. I have to agree that age is a number. How are you feeling?

> I'm sorry your insurance won't cover the remicade. Can you appeal it since

> remicade is done by infusion?

> a

>

> >

> > Dearest a,

> > I am sorry I missed your birthday. I hope you had a special day.

> > Reading your post it looks like you did. Turning fifty is wonderful.

> > When I turned fifty I just thought what a blessing it was, as so many

> > don't get to that point. Age is just a number, nothing more.

> > Again Happy Belated Birthday. You are special and I hope your day

> > was also special.

> > Love Lynn (MeMom)

> >

> >

> >

> >

> >