Pam

[Guest guest]

Hi Pam,

Thanks for replying back to my post. I sure hope your son gets better. Be

aggressive don't give up, and please do keep us informed and ask any

questions you need to. Sorry you have to go through all this. It seems

especially worse in children and the elderly. Its definitely no fun. He is a

lucky boy to have a mom willing to research and find out all she can about

this disease. Most important is support and love, and of course TLC. Hang in

there, and talk to you soon. Vicki, Md

> To Vicki and all:

>

> Yes, much of this I know, having gone through an education I wish I didn't

> need.

> My son was tested for co-infections. I know about the herx, I know about

> the politics,

> what a mess! After 3 months of treatment my son has experienced

> an alarming decline and no one needs to twist my arm to convince me that

> something more

> aggressive is required. I'll keep you guys posted --I can't help but feel

> that if I drill down into this

> and see the right professionals that things will improve. Too bad lyme is

> such a tangled web it has

> taken this long to realize what I must do.

>

[Guest guest]

Dear Pam: Thanks for the kind words but most of all thanks for those

prayers.

Friends and prayers are two things you can't have to many of.

Take care, Genny/Jodi's Mom

[Guest guest]

Pam....You have not seen all my grey hair...thanks to Tyler...LOL...

Thanks for thinking of us...

Luanne Ty's mom

[Guest guest]

Hi Pam: I'm sorry it has taken me so long to get back to you but things

are crazy for us. Yes, the report has come around. Actually she was very

nice and stayed talking to us for about two hours. They must have taken a

whole roll of film with Jodi and her son Colton swinging on a tree swing by

the lake. She wants to follow the whole process of the transplant and it

even sounded as they may come down for the great adventure. LOL

The closer it gets the more nervous I become. I don't let my family see

that

though.

I have over 500 posts so I must start the task of deleting them. I wish I

could read them all but for some reason people insist and expect me to work.

LOL

Hope everything is going well for you.

Genny/Jodi's Mom

[Guest guest]

Genny,

Thanks for responding back to me! I am so glad that the reporter came to her senses and saw the "true" meaning of what you and Jodi are going through. Your strength is contagious! It is ok if you let someone else see that you are worried. That is something that I have just recently found out myself. You cannot go through the tremendous amount of emotions that you are going through, and expect to be the cheerful one all of the time. I guess that is why we find this wonderful support group to be so therapeutic! I am so glad that things are finally coming together for the two of you. Jodi is so lucky to have you! My thoughts and prayers are with the two of you all of the time! Stay strong and positive!!! Remember...you are an inspiration to many people, and you always have an E-shoulder to lean upon!!

Sincerely,

Pam in CT

[Guest guest]

Yes Judy you will have to get on the access assurance list.

I have been on it since April 4th they just got a bunch of numbers but I don't think Im on it. You need to get on it as soon as possible.

It will delay your treatment until you get the number. If you would like to read more about it their is a great site that I go to. It is called www.medhelp.org they have a lot of people there waiting and alot of people on the meds. It is a forum. You can post a question and get a response really quick.. the pps there are really helpful..

Keep me informed

God Bless

P. Davey

-- Re: It's been awhile

Hey Teri,....Terri here. I havn't heard anything yet...how about you? I know work is giving me a hard time, and feels I should be back to working 8:00-5:00 Monday thru Friday, six months of being off and on I guess is not cutting it with them...I only wish they knew how I feel, But I can not afford not to have insurance....so now they have put me on supervised sick leave. Which basically means if I sneeze I need a doctors note. I'm sorry to be sounding off to you, i guess I am just sounding off to get my frustrations out...thanks for listeneing...and I truly hope you received good news!

Love Terri MD shhcovertoperate@... wrote: Hi Terri, Teri here I just reached my half way point and waiting to see if it's working. Maybe we will both have good news. Good luck !

[Guest guest]

-- Re: It's been awhile

Hey Teri,....Terri here. I havn't heard anything yet...how about you? I know work is giving me a hard time, and feels I should be back to working 8:00-5:00 Monday thru Friday, six months of being off and on I guess is not cutting it with them...I only wish they knew how I feel, But I can not afford not to have insurance....so now they have put me on supervised sick leave. Which basically means if I sneeze I need a doctors note. I'm sorry to be sounding off to you, i guess I am just sounding off to get my frustrations out...thanks for listeneing...and I truly hope you received good news!

Love Terri MD shhcovertoperate@... wrote: Hi Terri, Teri here I just reached my half way point and waiting to see if it's working. Maybe we will both have good news. Good luck !

[Guest guest]

Hi Pam…. is on the other group…survivingpain….you

sent a welcome to the wrong group….we all do this from time to time….how are

you doing? I’ve been busy and not on internet much the last couple of days…hope

to spend more time tomorrow answering emails….take care….judy

-----Original

Message-----

From: Pamela Rae Davey

[mailto:pdavey@...]

Sent: Tuesday, June 11, 2002 8:19

PM

Hepatitis C

Subject:

Hi ,

Welcome to our group. I

have just joined also.

I have hepatitis C and

waiting for treatment.

I am 45 and have two

children & . I love meeting new friends. I hope all is well

with you.

God Bless you and yours

Pamela Rae

aka - Sablelovely

[Guest guest]

Hey Judy may I ask what the zip file image001. was / I downloaded it and a

box came up saying two items were extracted which is not a good sign. Now I'm

afraid toopen it I just got way laid with a worm (virus) last week so a

little paranoid. It crashed the computer of the gal that orginally was

infected then it sent it out to all the hepsingles1's emails. Not a good

thing! Teri

[Guest guest]

Here's another download same zip file name and no comments on why there is a

download, please note in your emails what download is, this is for every ones

well being, these viruses can destroy every thing you have. Love, Teri There

was one attached to Pam's also! These viruses can be sent to you in emails

then when you open it you are infected. Teri

[Guest guest]

Hi Judy,

Tell me please what is the address that is for our group!!! I'm really trying to get this down right. Thankx

Your friend

Pamela Rae

-- RE: Pam

Hi Pam…. is on the other group…survivingpain….you sent a welcome to the wrong group….we all do this from time to time….how are you doing? I’ve been busy and not on internet much the last couple of days…hope to spend more time tomorrow answering emails….take care….judy

-----Original Message-----From: Pamela Rae Davey [mailto:pdavey@...]Sent: Tuesday, June 11, 2002 8:19 PMHepatitis C Subject:

Hi ,

Welcome to our group. I have just joined also.

I have hepatitis C and waiting for treatment.

I am 45 and have two children & . I love meeting new friends. I hope all is well with you.

God Bless you and yours

Pamela Rae

aka - Sablelovely

[Guest guest]

Address is

survivingpain

or just push reply

from someone else’s email of the group….write your note and send….it will take

a little while to get it down…don’t expect to learn it all in one day…really

you’re doing alright…love…judy

-----Original

Message-----

From: Pamela Rae Davey

[mailto:pdavey@...]

Sent: Tuesday, June 11, 2002 10:31

PM

Hepatitis C

Subject: RE: Pam

Hi Judy,

Tell me please what is

the address that is for our group!!! I'm really trying to get this down

right. Thankx

Your friend

Pamela Rae

-------Original

Message-------

From:

Hepatitis C

Date:

Tuesday, June 11, 2002 09:49:54 PM

Hepatitis C

Subject:

RE: Pam

Hi Pam…. is on the other group…survivingpain….you sent a

welcome to the wrong group….we all do this from time to time….how are you

doing? I’ve been busy and not on internet much the last couple of days…hope

to spend more time tomorrow answering emails….take care….judy

-----Original

Message-----

From: Pamela Rae Davey

[mailto:pdavey@...]

Sent: Tuesday, June 11, 2002

8:19 PM

Hepatitis C

Subject:

Hi ,

Welcome to our group.

I have just joined also.

I have hepatitis C and

waiting for treatment.

I am 45 and have two

children & . I love meeting new friends. I hope all is

well with you.

God Bless

you and yours

Pamela Rae

aka - Sablelovely

[Guest guest]

Hi Shhcover

This is Pamela. I use incredimail. And I think that people without incredimail can only view the backgrounds as an attachment. It might be a download im not sure but if it is from me belive me it is not a virus of any kind. It is only a pretty picture.

Your friend

God Bless you

Pamela Rae

aka Sablelovely

-- Re: Pam

Here's another download same zip file name and no comments on why there is a download, please note in your emails what download is, this is for every ones well being, these viruses can destroy every thing you have. Love, Teri There was one attached to Pam's also! These viruses can be sent to you in emails then when you open it you are infected. Teri

[Guest guest]

Thanks Judy

Have a great day! I have to go shopping for a wedding gift for my brother in law today. Don't even know what to get!! I'm going to try things remembered. Its a pretty cool store.

Friends forever

Pamela Rae

-- RE: Pam

Hi Pam…. is on the other group…survivingpain….you sent a welcome to the wrong group….we all do this from time to time….how are you doing? I’ve been busy and not on internet much the last couple of days…hope to spend more time tomorrow answering emails….take care….judy

-----Original Message-----From: Pamela Rae Davey [mailto:pdavey@...]Sent: Tuesday, June 11, 2002 8:19 PMHepatitis C Subject:

Hi ,

Welcome to our group. I have just joined also.

I have hepatitis C and waiting for treatment.

I am 45 and have two children & . I love meeting new friends. I hope all is well with you.

God Bless you and yours

Pamela Rae

aka - Sablelovely

[Guest guest]

Hi Pam Teri again, yours are different, you don't actually download it on to

your computer. I'm not concerned about yours, you see them the others are who

knows what until it's in your computer.

[Guest guest]

Hello, I just joined & am planning for the band soon in Tijauna!! I hope its

OK to post a question?? For the people that had thier band in Mexico, where &

who do you follow up with up here in the PNW? I dont want to have to FLY down

there if i dont have to. Tami -In Lynnwood, wanting to chat w/ other

pre-bands & Newbies!!

[Guest guest]

Hi Tami,

I was just banded a couple weeks ago by Dr Rumbaut in Monterrey, Mexico. My

original doctor was Dr Oh in Federal Way. I could go to him for my fills, but

my intentions are to go to Tacoma radiology for my fills. Dr Fox and his

staff does follow-up care along with fills. You could call both offices and

ask them if they will do your follow-up and fills.

Donna

Seabeck, WA

8/27/02 Dr Rumbaut

[Guest guest]

Donna, Thank You so much!!!! Tami

[Guest guest]

Pam,

I had my friend who is on a Sheltie list check out my other lists, and she

couldn't get into anything on them. I guess the members only status wipes out

everything else. The other two Google hits were public websites. One was our

Flat Coated Retriever Specialty website where I was the person who would order

dog food for people coming into town. Another was a friend of mine who had

designed a website for a scrapbook supply site and she wanted to know if it was

working correctly, so she asked me to check it out and post something to her

guest book.

I agree, computers are weird! A friend of mine says that the only way we learn

about them is when something goes wrong - I believe she is right!

Marilyn

Re: Some changes to the group!!

> Thank you, LeighAnn! Just a question though, why did you lock up the

Archives? If the list is now members only, no one else should be able to

access them.

>

> I'm still scratching my head, trying to find out why Google had two of my

posts listed, and nobody else's!

>

> Marilyn

>

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.487 / Virus Database: 286 - Release Date: 06/01/2003

[Guest guest]

Sure!! Feel free to link it on your site! I'm glad you like it.

LeighAnn

[Guest guest]

Pam - It did the same thing to me, I get very few posts I don't know what happened. Pam, do you know how Patty is? I have not seen anything about her and I wondered if she was ok. How are you

doing? I am so bloated and have nausea, plus pain on my left side ( don't) know what that is more like just before your ribs end I think.

Hope to hear from you soon. Hug's, H. (mhe3053904@...)

[Guest guest]

In a message dated 4/9/2004 5:41:28 PM Alaskan Daylight Time,

nucleus24@... writes:

>

> Hi Pam,

> Are you having a cochlear implant, or an Auditory brain implant (ABI)

> ? Is the implant going into the ear that had the accoustic neuroma or

> the other ear. Although Cochlear Corp makes both devices, they are

> different.

> If you're going for the Cochlear Implant on the left side (where you

> didn't have the accoustic neuroma surgery), here's the scoop. Any

> surgery to the ear and it's surrounding area CAN leave you with temporary

> dizziness, taste disturbance or facial problems. In almost all cases

> these will be temporary, and will disappear when the swelling subsides.

> Some folks emerge from surgery looking bruised, again because of the

> swelling.

> So, rest assured that most of the cases where something like this

> happens, it is temporary, and well worth it to gain hearing again.

> Where is the surgery being done, and who is your surgeon. Have you

> made a choice of what kind of implant you'll be getting?

> Good luck,

>

>

> Nucleus Volunteer

Thanks .. I am hopeful.

It is just that so far I have had things happen to me that *most* people

don't have happen.. such as acoustic neuroma, spinal fluid leak, and then a

contralateral hearing loss 6 weeks after AN surgery.. all of which left me

holding a

supervisor job in an acute care psych unit and profoundly deaf. The odds of

that happening to anyone are like one in a million. Hence it may be obvious

why I am a little *gun shy*.

All the doctor could say was " You poor thing " and walk away while I was left

with the deafness.

So anyway I am trying to be optimistic and say that my bad luck is over.. and

only good luck from here on in..but sometimes I falter.

Thanks for your hopeful posting.

pam

[Guest guest]

In a message dated 4/13/2004 4:31:16 PM Alaskan Daylight Time,

nucleus24@... writes:

> Hi Pam,

> Make sure you get yourself to an implant center in Seattle. Not just

> another ENT. Each manufacturer maintains a list of who does implants and

> where. Best bet is an otologist, who is a specialist in the ear as well

> as and ENT. It's a specialty that goes beyond ENT.

> Let me know if there are any questions you have that I can answer for

> you.

> Later,

>

I'll be working with the " Listen for Life Center " at Virginia Mason Hospital

www.VirginiaMason.org/hearing their implant page is

http://www.virginiamason.org/dbListen/sec398.htm

Don't worry, I would never go to just an ENT.. I'm an RN myself and even

though I don't know too much about CIs yet, I'm pretty well versed in all these

technicalities about doctors.. at least to know which doc is qualified to do

what. My AN surgical team were an otoneurologist and a neurologist. The town

where I lived at the time was Helena Montana and the ENT there referred me 1000

miles away to the Seattle Specialists once my AN was diagnosed. My ENT here

in Anchorage was trained to do CIs but they aren't being done here in Alaska

yet for some reason so she will refer me to Seattle but will care for me once

the implant is done. I think they can even do the activation up here working

over a telecom with the seattle team.

The Seattle Team is coming here to Anchorage the 22nd to provide a community

Education Seminar. I will attend that also.

Pam

[Guest guest]

In a message dated 4/20/2004 8:25:14 PM Alaskan Daylight Time,

nucleus24@... writes:

> You might work on lipreading, or speech reading as they call it these

> days. That's a help even WITH a cochlear implant. I notice in a noisy

> situation, between the implant and the ability to read lips, I often hear

> and understand better than hearing people do. Noisy restaurants, bars,

> etc.

I'm definitely hoping to improve my speechreading ability with a CI... this I

am really looking forward to. My hearing aid that I use now is an Impact and

it is so loud for some things like paper rustling and dogs barking, that the

noise can throw me off balance.. yet if I turn it up loud enough to get voices

more clearly the other loud things then knock me over and make my stomach

turn over too and also it screeches like a screech owl! so I keep it turned

pretty low.

I'm really looking forward to the possiblilty of getting rid of that

headache!

Pam

[Guest guest]

In a message dated 4/21/2004 5:54:33 PM Alaskan Daylight Time,

nucleus24@... writes:

>

> Hi Pam,

> Lots of us wish there was a " clarity " switch on a hearing aid rather

> than a volume one. When you're not hearing things clearly - like having

> a radio on in the car and driving out of the broadcast area - making it

> louder doesn't make it any more understandable. That's the difference

> between hearing aids and cochlear implants. HAs make things LOUDER, they

> don't make things clearer. CIs will let you understand things more

> clearly. AND you can increase the volume or sensitivity to suit

> yourself. No more loud barking dogs. I have one who howls when fire

> engines go by, and I live 2 blocks from a fire station.

> Between the implant and lip reading, you should do real well. I'm at

> the point where I rarely lipread unless it's in a real noisy situation.

> But when you watch FOOTBALL games, YIKES, those coaches have very

> " colorful " vocabularies. Some have taken to holding paper in front of

> their mouths, so as not to provide further entertainment to the audience.

>

>

>

> Nucleus Volunteer

Thanks for all your good information.. it's appreciated. Tomorrow night I

meet the team from Virginia Mason.. The seminar will be captioned by CART.. I'm

looking forward to it!

Pam (in Anchorage)