Wondering

[Guest guest]

In a message dated 6/12/99 8:54:43 AM Central Daylight Time,

Scooby759@... writes:

<<

>>

Hi ,

I wasn't sure from your letter if the medication you were referring to was

for C or for depression. Let me know. My brother started on the treatments

for C but stopped after about 6 wks because the side effects were so severe,

INCLUDING depression. But I have communicated with many people who have not

had much problem with it. If you do start the treatments, you need to know

that YOU can stop them for whatever reason you need to. You do not need a

doctors' permission. Sometimes I think we have been conditioned into thinking

that we have to do what someone else says because of some title they happen

to have, but you know more about what is going on with you than anybody else

does. I think the ideal situation would be to have your doctor be a part of a

decison making " team " with you at the head of the table, making the final

decisons, with the support of the rest of you team (family members, supports,

etc.) Yes, it is hard to know what the right decision is, but you know really

none of us have any way of knowing how any of this will turn out and all you

can do is try to make the best decision with what information you have

available. There are no guarantees. It is my hope that whatever decision you

make, it has the best possible outcome. Good luck to you.Sandy

[Guest guest]

Dear ,

Just as medical science is beginning to approach physical health care in

a different way the strides in mental health are beginning to break new

ground. Like your husbands reaction many still adhere to an almost

unconscious belief that mental health professionals are akin to witch

doctors. That seeking some sort of mental health professional is a sign of

weakness. That you are just going through a " phase " and like children you'll

grow out of it. My daughter is a good example. She's 20 and having many

issues from unresolved issues that for now keep her in a pattern of denial

and avoidance. She blames her childhood, her friends, and her parents to her

present perceptions and life. It would appear much of your indecision is due

as I've said before to the influence of others that you have given your

power to. All the recommendations of not only people on this list but your

family and friends are really invitations to develop your own Truth about

you. You are you experiencing you and no one else.

The many alternative therapies and advice about food etc.. that has been

presented in this forum are possibly true. They work or perhaps could work

for you. My ideas or any ones are mine and theirs. Glean from these

dialogues what feels right for YOU. You don't Trust your own feelings. These

ideas and suggestions of anyone are ones that they feel at the time. Some of

the therapies worked for them but yet for you they might not be appropriate.

My point is with you and everyone else is that to totally rely on another is

not your own and Perfect Truth.

See I take this spiritual stuff to a level that understands what works

for me. It may not work for you. Just as we have all been led to believe

that success in life is measured by external means i.e.: how I appear, what

do I do, what is my history, and how would others look at that, plus my

beliefs is who I am. I allow all this to essentially tell me who I am. Now

for some what I just said will be the rantings of someone a little " crazed "

but for others it just may help.

In your case you believe that God's will is somewhat separate from

yours. Because God is there and your NOT. Even the idea of God is separate

from you let alone everything else. But you know what is interesting we

continue as a species to rely on the external. To look for answers

externally for our own Truth about ourselves.

Whatever present ideas, questions or thoughts a person has about their

individual situation are just like any aspect of science, evolving. We all

are evolving not only in the concept of the external world but first our

concept of Self. For the external world expresses this concept. So never try

to hold onto anything to tightly.

We continue to meet violence with violence never understanding not only

ourselves but the history of this species looking for a resolution of

differences through the same means that have never worked. We belief as a

race that we will achieve a goal that has consistently shown that it does

not work through past methods. We continue as a species to look to an

external form to satisfy our personal needs which in most ways are the Truth

of others.

The point of all what I've written is if this next doctor says you are

not suitable for treatment because of past mental health concerns tell

him/her that either I die from a disease I know I have or I'll do it myself

at least according to what has been written. It is such foolishness to

believe totally in an others opinions. What I would suggest is to go to a

mental health professional and work through all issues that you have or at

least begin the process.

I would be surprised if all this was put on the net but?

wondering

>From: Scooby759@...

>

>Hi all,

>I haven't written in a while but I read everyday. One thing I notice is

how

>knowledgable you all are about the alternative ways to take care of

yourself

>if you are not taking the medication (and even if you are) I am going to

see

>another doctor on the 16th to see if he will allow me to take the

medication,

>he is my second opinion because when I was actively drinking I was very

>depressed and suicidal. Suicidal for attention really because I don't

think

>I would have had the guts. Anyway, I stopped drinking and was going to aa

>and a womans group and the womens group sent me to a psychiatrist. My

>husband found out and was furious. He said I wasn't depressed I was just

>going through some things because I was newly sober. I stopped seeing the

>psych and I have been sober almost 1 year (on Fri the 18th) I do not feel

>depressed since I stopped drinking but i received my records to bring to

this

>new doc and all over it it says depression. I want to do the right thing

and

>I truly believe in God's will but I find it very hard to know that the

choice

>of taking this medication is up to some guy I never met. Also if he does

say

>no my first gastro says we'll just wait a couple years and see how you are

>then. I'm in an HMO and it took alot for me to get this second

>opinion.....Do I just wait around if this doctor says no? I feel so

helpless

>and it really gets me angry. Sorry I'm rambling but I needed to get this

>out, no one at home really listens. I think they are scared about this

whole

>mess too.

>Thanks for your ear!

> in Illinois

>

>------------------------------------------------------------------------

>ONElist members are using Shared Files in great ways!

>

>Are you? If not, see our homepage for details.

[Guest guest]

I know of one who never deployed to the Gulf, but, who recently had the

shots, and came back at +1 for the antibodies, per Asa's study.

<< The new study was on the Gulf War era veterans. Does anyone know if any

tests have been done on those who are getting ill from the latest shots

(AVIP)? >>

[Guest guest]

Dr. Greg Poulan of Mayo Clinic did a study based on Dr. 's

interviews at the 110th in Battle Creek. How he did it no one knows. This

study was used at the O'Neil trial in Pittsburgh. He has never examined or done

any medical tests on members of the 110th. Dr. didn't do any tissue or

blood samples either so how he can make a diagnosis by just looking at a patient

is phonemal. Dr. Poulan is a vaccine specialist. I have left a message to

speak with him about Tom's symptoms but he doesn't return my calls. I would

think he would be interested in examining Tom or at least talking to him. Mayo

Clinics stellar reputation isn't deserved if this is the doctors they have.

Besides Tom still has the longest case of the flu known to man as do the others.

Why would anyone study the flu? His started September 1998 and no end in sight.

We were just looking at a picture of Cohen taking his anthrax vaccine and

smiling. Tom said any one taking that shot couldn't smile because it hurts so

much. Is there anyone else who felt the same way after taking the shot?

Debbie Starkweather

wondering

From: " The Bellers " <beller@...>

The new study was on the Gulf War era veterans. Does anyone know if any tests

have been done on those who are getting ill from the latest shots (AVIP)?

[Guest guest]

O' yeah... nice burning sensation. Lasts about 2-3 minutes.

<< Tom said any one taking that shot couldn't smile because it hurts so much.

Is there anyone else who felt the same way after taking the shot? >>

[Guest guest]

As far as I know all's well with Dr Chiu, I 'spoke' to him not that long

ago....not that he'd tell me if he wasn't OK :-))

I think it's just that he's an EXTREMELY busy man and we can consider

ourselves lucky that he 'ever' found time for our questions.

I've already had half my weekend, hope yours is good too:-))

hugs,

lisbeth

>From: Judkeels@...

>...I've been wondering what has happened to Dr. Chiu. In the short 5 months

>or so that I've been involved with this wonderful group, he has provided

such

>needed information and input....hope he's on an extended vacation

somewhere.

>Have a good weekend everybody,

>Judy (Keels)

[Guest guest]

Kay, you say that having cirrhosis has opened your eyes to how others feel having diseases. That is the gift I'm taking from having this illness -- a slightly better idea of what lies behind many other people's days and nights.

Harper (AIH 5/00)

[Guest guest]

Hi Kay,

Count me in for at least a year I think it's even longer than that. I

can't remember when it was. I was thrown out of another liver support

group and this group took me under their wing. It's a long story.......

Joan Claffey

NJ

Kaytarot@... wrote:

>

> Hi all,

> I was just wondering something.

> How long have you all been in this support group?

> This is all new to me, I dont even know how I got here.

> But Im glad I am. I hope Im not a pest. Having Cirrhosis

> has really opened my eyes to alot.

> Not I know how it feels, and how others feel having

> diseases. Its easy to take life for granted. I really admire all of you,

> your all so brave.

> And remember, today is a gift, its our Present.

> Kay

>

>

>

[Guest guest]

Really Joan ?

Thrown out ? Ide like to hear the story lol.

The first chat room (Art Bell's Paranormal room) I went to when I got this

computer 5 years ago, I got " tossed " alot. I had to learn manners LOL

I was drinking then, I was pretty goofey. I still go there now and then

to show them Im still goofey sober.

Im different, because I dont want to be like most of the people I know.

If I didnt laugh, Ide be in the cracker farm with Luanne, stripping lemons.

LOL just kidding...

Kay

[Guest guest]

As long as everyone is asking about members in our group! Where has , from Texas, been? Anyone heard from her? Miss all of you who haven't posted in a while!

Marcia

Mom to Sara (DS) and 6 and Lucas 10

[Guest guest]

Marcia: I miss hearing from too! I did hear

from her not to long. She had moved and was having

trouble w/her ISP (AOL), so she had no service for a

while. She finally got it straightened out and last I

heard, she's gone back to school to get her degree -

full time I think! I'll have to send her an email and

see if she still subscribes to the list.

Judi-Mom to Sam & , 4 1/2, Identical Twins

--- Rrietmann@... wrote:

> As long as everyone is asking about members in our

> group! Where has ,

> from Texas, been? Anyone heard from her? Miss all

> of you who haven't posted

> in a while!

>

> Marcia

> Mom to Sara (DS) and 6 and Lucas 10

>

__________________________________________________

[Guest guest]

We're here in Virginia. I have missed A LOT and been lurking once in awhile. I just can't seem to find the time to write, but since asked I thought I better speak up. We all here... me, my husband , and our 3 1/2 year old twins Vinnie (DS) and Sloan have been adjusting to working long hours every day, his mother moving in with us, losing a pet that was a family member to us, Vinnie going back to school (Special Ed Pre K at local Elementary School) and Sloan going this year for speech therapy. They both ride the bus, but not together. Vinnie goes to school 5 days a week and he's gone from home a total of 4 hours. Sloan goes 3 times a week for 30 minutes. Vinnie was in school for 2 weeks before he was headed to the doctors. Vinnie did not attend school last year on a regular basis, because he was always sick. He was fine all summer and then we all knew he'd get sick right away when school started. He's been out a week and I sent him back today, he's still not himself. We may end up pulling him out of school and have the home visits this year. Sloan is a year or more delayed in speech, she really started talking storm a couple weeks before school started. She's shy, but she has been acting the big girl when she gets to go to school. Both are still not potty trained and neither are showing any interest either. I think Sloan will be ready soon with her speech coming along so well. Vinnie has been telling when he goes in his diaper, but he always says "POOP" I have been working alot lately too, because I have no vacation or sick time left. 's business is going well. He still has the store in the mall and 4 carts. Things are in the making of selling all, but 2 carts that were on the boad walk at the beach this summer and opening a restarant with the franchise company he is with. Hope everyone is well and sorry I haven't been around too much lately.

~

[Guest guest]

,glad to hear that yall are ok. Sounds like the kids are doing good. Sure wished Vinny a speedy recovery. Hope he can get well and stay well and able to go to school.

Keep in touch.

[Guest guest]

At 12:49 AM 2/27/2002 +0000, you wrote:

> I have cholesteatoma in both ears , they have operated on my right

>ear five times the reconstruction failed ,he said it was because I

>have alot of scar tissue. My question is ,I'm having alot of

>headaches and the dizziness has gotten so bad that I have fallen once

>and almost fallen several times.He says that he does,nt think it is

>from my ears ,so he ordered an mri.now he is sending me to a

>neurologist. Does any one else have these problems,if you have please

>let me know.I have no hearing in the right ear and he says if the

>other dr finds nothing then he may have to operate on the left ear

>and I am scared to death. Please help

Try to take this one step at a time. He's not going to go in and do

surgery on your good ear without a darned good reason, and certainly not

without your informed consent. You have to agree with his reasons for

surgery, you need to understand what he hopes to accomplish, and if you

don't like the reasons, you don't have to do it. I'm not saying you

shouldn't because I don't know your medical history and I'm certainly no

doctor, but you need to be totally satisfied first. If that entails a

second opinion or two hours with your doctor asking lots of questions, then

that's what you should do.

I'm willing to bet your surgeon isn't just going to go in and

explore. Sending you for an MRI and a consult with a neurologist is a good

way to start finding out why you're dizzy.

It is scary to have this stinkin' condition. We're all here because of it,

we're all here for you, too. Ask him what's going on during each step of

the diagnostic process, do some research on the net, talk to us. We're no

substitute for sound medical advice, but we can help you ask some

questions, maybe steer you toward information, and listen to you vent.

Let us know how it is going and what you find out.

Diane Brunet

[Guest guest]

Hi! Welcome to the group. Several of us have experienced dizziness

only to be told by our doctors that it is not related to our c-toma.

(My doctor is included in this group.) From things I have read on

this site, I am beginning to think c-toma can cause dizziness and I

definitely think it can cause headaches.

Have you ever had surgery on your left ear? Are they sure you have c-

toma in your left ear? When is your MRI and your appt with the

neurologist? Hang in there and keep us posted!

Best wishes,

>

> I have cholesteatoma in both ears , they have operated on my right

> ear five times the reconstruction failed ,he said it was because I

> have alot of scar tissue. My question is ,I'm having alot of

> headaches and the dizziness has gotten so bad that I have fallen

once

> and almost fallen several times.He says that he does,nt think it is

> from my ears ,so he ordered an mri.now he is sending me to a

> neurologist. Does any one else have these problems,if you have

please

> let me know.I have no hearing in the right ear and he says if the

> other dr finds nothing then he may have to operate on the left ear

> and I am scared to death. Please help

[Guest guest]

What I wonder about is

- why some of us lose 150 lbs and some of us lose 75 lbs,

- why some of us dump and others don't,

- why some of us have constipation and some diarhhea,

- why some of us are anemic and others not,

- why some of us have bile reflux and others acid reflux and

others neither.

> you know i really just wonder why some people have

bathroom problems

> and others dont. smelly gas seems to be my only complaint....

i

> have dumped 3 times... popcorn , ice cream, and fried rice. i

have

> eaten all 3 things before the dumps and since. each time i

think i

> ate way too much and overloaded my pouch. the anemia i had

i really

> think was due to me getting lax with the vitamins. my bathroom

> visits were pretty loose the first 2 weeks and since....

> completely normal. i credit the citrucel. i hear about all the

> problems .... SURELY there are more like me who are doing

> great....aren't there?? lets hear from you!!

>

> xoxoxo

> cathy s in va

[Guest guest]

Well..... because each person is different. Each body is different. Each

person response differently to different things. I don't think anyone

anywhere share exactly the same experiences. So why should they with this

surgery, huh? Just a thought...

aW

On Mon, 25 Nov 2002 16:55:51 -0000 lornadoone121 <lornadoone121@...>

wrote:

> What I wonder about is

> - why some of us lose 150 lbs and some of us

> lose 75 lbs,

> - why some of us dump and others don't,

> - why some of us have constipation and some

> diarhhea,

> - why some of us are anemic and others not,

> - why some of us have bile reflux and others

> acid reflux

> and                     

>

> others neither.

>

>

>

>

> > you know  i really just wonder why

> some people have

> bathroom problems

> > and others dont.  smelly gas 

> seems to be my only complaint....

> i

> > have dumped 3 times... popcorn , ice

> cream, and fried rice.  i

> have

> > eaten all 3 things before the dumps and

> since.  each time  i

> think i

> > ate way too much and overloaded my

> pouch.  the anemia  i had

> i really

> > think was due to me getting lax with the

> vitamins.  my bathroom

> > visits were pretty  loose  the

> first  2 weeks  and since....

> > completely normal.  i credit the

> citrucel.  i hear about all the

> > problems ....  SURELY there are more

> like me who are doing

> > great....aren't there??  lets hear

> from you!!

> >

> > xoxoxo

> > cathy s in va

>

>

>

>

>

>

>

[Guest guest]

,

Good questions. I think it's because even though we all had the same procedure,

we are different people and our bodies react differently because of that. Just

my thoughts.

in OK

In a message dated 11/25/2002 11:55:51 AM Eastern Standard Time, " lornadoone121 "

<lornadoone121@...> writes:

>What I wonder about is

>- why some of us lose 150 lbs and some of us lose 75 lbs,

>- why some of us dump and others don't,

>- why some of us have constipation and some diarhhea,

>- why some of us are anemic and others not,

>- why some of us have bile reflux and others acid reflux and                  

   

>others neither.

>

>

>

>

>> you know  i really just wonder why some people have

>bathroom problems

>> and others dont.  smelly gas  seems to be my only complaint....

>i

>> have dumped 3 times... popcorn , ice cream, and fried rice.  i

>have

>> eaten all 3 things before the dumps and since.  each time  i

>think i

>> ate way too much and overloaded my pouch.  the anemia  i had

>i really

>> think was due to me getting lax with the vitamins.  my bathroom

>> visits were pretty  loose  the first  2 weeks  and since....

>> completely normal.  i credit the citrucel.  i hear about all the

>> problems ....  SURELY there are more like me who are doing

>> great....aren't there??  lets hear from you!!

>>

>> xoxoxo

>> cathy s in va

>

>

>

[Guest guest]

Kat,

Please talk to your audiologist about this. You may want to try another

speech strategy program. Some people say voices sound choppy on one program but

fine on another program. Also, check and find out what your Speech Dynamic

Range is. Also, find out if you are using all of the electrodes or not. Maybe

the levels need to be remeasured.

A.

In a message dated 8/25/03 6:00:20 PM Pacific Daylight Time,

jandkdewitt@... writes:

> Which leads me to some questions on speech/sound. Most days

> (unfortunately) I still can't stand listening to my DD. It all sounds

> terrible whether she's just talking or crying. Occasionally, with

> anyone I start hearing kind of a low " brrring " in people's speech.

> Then sometimes it sounds underwater/muffled. Is this normal to

> fluntuate in sounds like this?

>

[Guest guest]

Kat you might need a new mapping session as your brain is changing.

--

Snoopy

congential rubella-prelingual

hearing aids since 3

left implant 3G 7/19/02

right implant 3G 5/15/03

Bilateral and loving it!!

[Guest guest]

Does this happen with fresh batteries? When my batteries are low on the 3rd day

I get bad muffled sound. Maybe time for a mapping.

Sharon Myers

Bilateral

Kat & <jandkdewitt@...> wrote:

Hello everyone! How are you all doing? Ready for your kiddos to go

back to school? I sure am, they load the bus tomorrow. I'm sure I'll

cry since DD is starting Kindergarten but I'm looking forward to some

peace and quiet after a crazy summer.

Which leads me to some questions on speech/sound. Most days

(unfortunately) I still can't stand listening to my DD. It all sounds

terrible whether she's just talking or crying. Occasionally, with

anyone I start hearing kind of a low " brrring " in people's speech.

Then sometimes it sounds underwater/muffled. Is this normal to

fluntuate in sounds like this?

Kat

[Guest guest]

Good Question Sharon-- I do notice the quality of change when the batteries

are getting ready to die but not always. Usually it is more when the mappings

need to be change then it is harder for me to follow on the last day of

battery life. This summer has been a CRAZY summer as far as humidity goes so

that would have an effect as far as the sound goes but since I have my trusty

dry and store that has not been a problem.... Hope that answer your question

--

Snoopy

congential rubella-prelingual

hearing aids since 3

left implant 3G 7/19/02

right implant 3G 5/15/03

Bilateral and loving it!!

[Guest guest]

I've heard other people say that they can tell when their batteries are

running down by the quality of their hearing. I've never had that experience

though; I'm fine until they die.

In a message dated 8/25/2003 10:38:17 PM Eastern Standard Time,

twin_sharon@... writes:

>

> Does this happen with fresh batteries? When my batteries are low on the 3rd

> day I get bad muffled sound. Maybe time for a mapping.

>

>

[Guest guest]

No residue!!! Don't throw them away but do save them and ask Cochlear for

replacements and if they want them back. If they do then request a postage paid

package. Or you can bring them to your audie and maybe get some replacements

there.

In a message dated 8/26/2003 6:22:55 PM Eastern Standard Time,

twin_sharon@... writes:

>

> Has anyone else had this problem? I keep the batteries in the closet and

> opened another box and they are the same way. I will not put another battery

in

> the processor that has the residue on it because I am afraid I will damage

> the processor. I have been throwing them away.

>

[Guest guest]

I noticed it a lot when I was on the Ace 900 map on the third day but it is not

so noticable on the 1200 map but the batteries go dead faster. I could tell this

morning the power is going down but at least I can still understand speech. I

have not timed the batteries since I got the 1200 map but I think it is about 2

1/2 days.

I think I also got some bad batteries and need to call cochlear about it. When I

open a pack, there seems to be a residue where the holes are in the top of the

batteries. One was so bad the processor would not work but I thought I would try

it and make sure I was not throwing away good batteries. I did swap the

batteries from the other processor to make sure and it was ok. I do know that

sometimes the left ear will go dead about 4 hours before the right and before

they were close together. The first time my batteries died after hookup, they

were less than 5 minutes apart.

Has anyone else had this problem? I keep the batteries in the closet and opened

another box and they are the same way. I will not put another battery in the

processor that has the residue on it because I am afraid I will damage the

processor. I have been throwing them away.

Sharon Myers

Bilateral

Dora Weber <dora_weber@...> wrote:

Hi Sharon

I don't notice any change in sound right up to when the batteries go dead.But I

do notice that there is a power surge when I put the new ones in.Maybe the sound

does go down but not enough to notice.

Dora Weber

Nucleus Volunteer Advocate

dora_weber@...

Bilateral

N22-96

N24C-01

Cochlear Otosclerosis