Re: (unknown)

[Guest guest]

Jan- as long as my hubby (Ken) isn't working @ his union job--he always

takes me to DR's appt's & goes in with me.. So they're pretty used

to seeing him with me at all appt. Sometimes if I'm not feeling especially

well- he takes time off from work for these appt's. He is just too

good to be true & I thank my lucky stars & God & whoever else

helped attract him to me! Plus the feeling is mutual- but he never

seems to get sick- but figures if the shoe was on the other I'd do the

same-stick by him! Which I would in a heartbeat. But he has

better access to better jobs & insurance, than I. But I DO Love

him so!!

arlene

Jannewilms42@... wrote:

That's great..I

always feel the way I am id due to the crap my ex's have put me through..I

have always had to depend on myself for everything..With this hubby I don't

work though but as far as moral support with my Hep he says he'd rather

not talk about it..He has been to a couple appts with me though to get

info but then he don't like talking about it and at times I really need

to..That is one way I found this group and am sooo glad I did..I was blessed

when I found all these great people..Don't know where I'd be without em.......Nice

having you in here too now Terry....

[Guest guest]

Jan- as long as my hubby (Ken) isn't working @ his union job--he always

takes me to DR's appt's & goes in with me.. So they're pretty used

to seeing him with me at all appt. Sometimes if I'm not feeling especially

well- he takes time off from work for these appt's. He is just too

good to be true & I thank my lucky stars & God & whoever else

helped attract him to me! Plus the feeling is mutual- but he never

seems to get sick- but figures if the shoe was on the other I'd do the

same-stick by him! Which I would in a heartbeat. But he has

better access to better jobs & insurance, than I. But I DO Love

him so!!

arlene

Jannewilms42@... wrote:

That's great..I

always feel the way I am id due to the crap my ex's have put me through..I

have always had to depend on myself for everything..With this hubby I don't

work though but as far as moral support with my Hep he says he'd rather

not talk about it..He has been to a couple appts with me though to get

info but then he don't like talking about it and at times I really need

to..That is one way I found this group and am sooo glad I did..I was blessed

when I found all these great people..Don't know where I'd be without em.......Nice

having you in here too now Terry....

[Guest guest]

Sherry-- Thanks for the info about temp. unsubscription to the list here

arlene

sherry chabaud wrote:

Wish to unsubscribe but would like to still

be a part of the group.

[Guest guest]

Dave--Whoops you did it now..be on the lookout for any traps!!!

arlene

imaganeer wrote:

> Na Na Na BOO BOO!!!

>

> Dave cleverly replies...

>

> --- Jannewilms42@... wrote:

> > Lets get busy then Dave..come hit me with your best

> > shot(like the song

> > goes)...LOL I'm ready for the next statement from ya

> > Mr King of Sass!!!!

> > Right Diane?

> >

>

> __________________________________________________

>

[Guest guest]

Diane-- How true! I'm voting for Scorpian

ace

diane214@... wrote:

> Is Susy a Scorpio?????? Or a Sagittarius? If she is a scorpio that

> explains it all!!!!!!!!

>

> Angel Hugs,

> Diane

>

> May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

>

>

>

>

>

[Guest guest]

Diane--Ken bought me MY truck in '96 a silverado with avroom vortek engine

in-- watch there I'm gone!!! whoosh!!!!! Like a bat outta hell if I so

choose!! Lot of the time on the roads Iwon't let people pass me as I'm

usually going 5-10mph over posted speed limit-- so I kinda figure I'm saving

them from getting a ticket!!<g>

arlene

diane214@... wrote:

> Dennis,

> That was supposed to say YOUR TRUCK..... I don't know how I became an

> owner also..... LOL.........

>

> Angel Hugs,

> Diane

>

> May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

>

>

>

>

>

[Guest guest]

See Diane I was right in me guess or vote for Scorpio

arlene

Terry Long wrote:

> She is indeed a scorpio

> Terry

> --- diane214@... wrote:

> > Is Susy a Scorpio?????? Or a Sagittarius? If she is

> > a scorpio that

> > explains it all!!!!!!!!

> >

> > Angel Hugs,

> > Diane

> >

> > May Rainbow Dreams Color Your World With Love, Hope,

> > Peace & Unity

> >

> >

> >

> >

>

> __________________________________________________

>

[Guest guest]

you betcha!!!!!!!!

Terry Long wrote:

> Dennis I thank us guys need all the help we can get

> with these ladies.

> Terry

> --- Dennis <dhuber@...> wrote:

> > Dave - you're not alone. I'm with you. If we go

> > down, we'll go down

> > fightin.

> >

> > Dennis

> >

> >

> > Re: [ ] (unknown)

> >

> >

> > > -dz-

> > > You must have ate your Wheaties today......

> > Sassy you say?????

> > > Bring it on.... You just can't win with us

> > girls....;o

> > >

> > > Angel Hugs,

> > > Diane

> > >

> > > May Rainbow Dreams Color Your World With Love,

> > Hope, Peace & Unity

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

At 06:38 PM 2/20/2002 +0000, you wrote:

> I'm so glad I found this site, because in 1-week I'm having surgery

>to remove a " tumor " that I have found out is called cholesteatoma.My

>doctor says he has done over 1,000 of these surgeries-but that

>doesn't make me feel any better. I have so many questions and worries

>that my doc tried to answer but I'd like to hear from someone that

>actually had the surgery.For instance- when you wake up from surgery,

>will I beable to hear out of that ear?

It's good that he has done so many. He's done a respectable number. Some

of our Listers have had surgeons who hadn't done *any* and wanted to do

their surgeries. Practice is great, but not on me! Not when this thing

can get so close to the brain.

I've had three surgeries. The first was removal of the c-toma which was

pretty extensive. Actual anesthesia time was over six hours. I had lost

one of my hearing bones and one facial nerve was too entrapped by the

growth and had to come out. I couldn't hear out of the affected ear after

the surgery, but I knew that going in. Six months later, I had a " second

look " and had more c-toma. Two more bones were gone and I had regrowth. I

also had a prosthesis placed and got almost all of my hearing back, to

almost pre-cholesteatoma levels.

I react badly to anesthesia, but everybody's different. There are a lot of

good anti-nausea drugs and they can be given during and after surgery. I

didn't have a lot of pain, far less than I had anticipated. I felt pretty

good after four days, but it all depends on the

extent of the growth, if the labyrinth is affected (causes dizziness) and

probably other factors.

Sometimes a CT scan doesn't show the extent of the growth and they don't

always know how extensive it is until they go in. It sounds like your

surgeon knows that you have c-toma, doesn't feel like he needs the CT to

confirm and maybe doesn't want to waste any time by having the study

first. Cholesteatoma always has to come out. It's not something that you

can just wait on. It doesn't go away without surgical treatment and will

only keep growing. If you aren't at all happy and aren't sure, you should

really get a second opinion. A good surgeon won't be threatened by that

and you can be darned sure if it was them or a family member, they would too.

> Does it hurt? Will I be real

>dizzy-if yes for how long. I have 4 children, one who is only 4-

>months old. My husband is taking 4 days off of work to help, is that

>long enough? I'm also worried becaus my doctor never did a c-scan and

>from what I've heard cholesteatomas can range in severity. I'd like

>to know before hand how bad mine is. anyone that would be kind enough

>to share there story with me I would greatly appreciate it. you can e-

>mail me at-jennherr2002@... or jenherr2002@.... Thanks!!!!

Can your husband take more than four days if you need it? Maybe it would

be better to decide how long you need him after you've been home for a

couple of days. You have a lot of responsibility!

Let us know how it goes. We're always here for you, even if it's just to

hear you vent. I sure wish this group was around when I was first diagnosed.

Diane Brunet

[Guest guest]

I would communicate with Dr. Dick Loyd for initial advise & get a saliva

test kit from him. Also consider

the material from www.sotainstruments.com with their Beck protocol.

Stan.

[Guest guest]

Of course I'm always with you so long as I'm feeling well enough to be

online- but then if I'm not -know that you have moral support always

arlene

Jannewilms42@... wrote:

Have no fear

Diane we can kick some guy butt if need be..You know we can..Come on girls

help us out Machelle you with us?Arlene?

[Guest guest]

Good & Bully for you in your support for Machelle & Jan's sake & of course-

they're kids- who must be suffering quite abit

arlene

Terry Long wrote:

> Ladies if you don't mind a guy helping out, I would

> love to kick some S.O.B can. For pitting you all

> against the kids. I kicked Susy's Ex's can several

> years ago & I can do it again. I'm so tried of hearing

> guys complain about paying child support for their own

> kids. I would love to kick another S.O.B's but.

> Terry

>

> __________________________________________________

>

[Guest guest]

My hubby likes to think that way @ times BUT I always seem to end up getting

it my which of course - is the right way!!!!!!!<g> I'm Being Bad now

arlene

imaganeer wrote:

> Remember we men rule the world. At least as far as you

> ladies let us think we do... -dz-

>

> --- diane214@... wrote:

> > HA!!!!!!!! Now Dennis has joined the guys.... What

> > can we do about this

> > one Jan???????

> >

> > Angel Hugs,

> > Diane

> >

> > May Rainbow Dreams Color Your World With Love, Hope,

> > Peace & Unity

> >

> >

> >

> >

>

> __________________________________________________

>

[Guest guest]

We'll put up a good struggle anyway! -dz-

--- Terry Long <pawpawto3@...> wrote:

> Dz us guys have to stick together. With these

> Ladies

> in here.

> Terry

> --- imaganeer <imaganeer@...> wrote:

> > You got it! Now I'm feeling better, I'm feeling a

> > little sassy too.

> > Come onnn....

> > Put 'em up..

> > Put 'em up.. (the cowardly lion, feeling his

> > oats)

> > -dz-

> >

> > --- Jannewilms42@... wrote:

> > > LOL....Big bad Dave!!! I hope you are feeling

> > > better..Now you say I'm sassy??

> > > Hummm and I wonder where my kids get it..I have

> > been

> > > told my mouth comes

> > > straight from hell so you aren't the first one

> to

> > > say that..lOL....I'm gonna

> > > start calling you BBD...Big Bad Dave!!!!! Hey

> > Diane

> > > let's get him..

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Terry -don't be left behind - they're talking about an email from gigglebutt

arlene

Terry Long wrote:

> Jan & Diane what am I missing here. I'm in a loss as

> to what you two are talking about.

> Terry

> --- Jannewilms42@... wrote:

> > Ok it's official we don't now who the hell it is but

> > I wish they's pop up

> > again and get into the conversation a little more so

> > we can get to know em

> >

>

> __________________________________________________

>

[Guest guest]

Hi,

I doubt you will be able to hear out of your ear. There will be plenty of

packing.

Whether it hurts and how much depends on your surgery and your pain

tolerance. Then there are always pain medications. They worked well for

me.

I was out of work for 1 week. I had a mastoidectomy as well. I felt like

crud for the 1st week. The second week I went back to work full time and

should have gone only for 1/2 time. I was overly exhausted by the end of the

day.

I had vertigo/dizzyness pretty much the 1st 5 days. Doc said it was from

natural swelling from the surgery. He gave me some motion sickness medicine

that worked wonders.

My complete story is on the choloesteatoma website.

http://www.pathfinders.com Then click on cholesteatoma. I'm case study

#333.

Good luck to you.

Jane

>

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Nope, I'm not touching that one. -dz-

--- diane214@... wrote:

> Jan,

> That 116 year old man must have had a few good

> women in his time!!!!!

> LOL.....

>

> Angel Hugs,

> Diane

>

> May Rainbow Dreams Color Your World With Love, Hope,

> Peace & Unity

>

>

>

>

__________________________________________________

[Guest guest]

I always win. I may get beaten up a little bit along

the way, but that's what makes it so much fun! -dz-

--- diane214@... wrote:

> -dz-

> You must have ate your Wheaties today......

> Sassy you say?????

> Bring it on.... You just can't win with us

> girls....;o

>

> Angel Hugs,

> Diane

>

> May Rainbow Dreams Color Your World With Love, Hope,

> Peace & Unity

>

>

>

>

__________________________________________________

[Guest guest]

Na Na Na BOO BOO!!!

Dave cleverly replies...

--- Jannewilms42@... wrote:

> Lets get busy then Dave..come hit me with your best

> shot(like the song

> goes)...LOL I'm ready for the next statement from ya

> Mr King of Sass!!!!

> Right Diane?

>

__________________________________________________

[Guest guest]

Hi Rocco You are welcomed here I'm Arlene- had HepC for about

30 years & found out about it in'88

Jannewilms42@... wrote:

Hello Rocco..How

are you and welcome to the group..I am Jan and also have Hep..Have had

it for almost 20 yrs and just found out 2 yrs ago..Where are you from??

Please let us know more about you and again welcome.

[Guest guest]

Machelle I can't right off hand tell what's the norm but mine run

about double the norm & always have- since getting virus..I have

a genotype of 3a- which is supposed to easy to treat.. but they unfortunately

took too long to come up with treatment & now it is too late for that-

only option I have is transplant - if I can ever get on the darn list up

here. There aren't a lot of the 3a genotypes in the USA most are

1a - 1b - 2a -2b, which is much harder to treat

arlene

Machelle wrote:

What

is the normal AST and ALT levels supposed to be? Mine are running

anywhere from normal to around 3000.... In Jan. both were 99, first of

Feb. they were in the low 1000's. But in Dec. they were in the 3000's. Machelle

Re: [ ]

(unknown)

Hi Jan,

Im not sure when i got the bug, but i was diagnosed a year ago and I

am just now eligible for Tx. I live in BC and we have socialized meds here

so you have to have at least 150% normal AST and ALT . Everything was OK

til Dec. then my counts went thru the roof....234 & 128 yikes!!!!

Anyways, all is well , i have a biopsy next month and hope to start

treatment soon. I have to decide whether to wait for pegylated to come

on the market as it is only in trials here.

ttyl

Rocco

At 05:02 PM 2/21/02 -0500, you wrote:

Hello Rocco..How

are you and welcome to the group..I am Jan and also have Hep..Have had

it for almost 20 yrs and just found out 2 yrs ago..Where are you from??

Please let us know more about you and again welcome.

[Guest guest]

My truck has a 350 in it-it's the vortech 350 & it runs on plus gas not super &

I can get gas in WA for 117. per gal.....which isn't as bad as it used to be

when it was almost $2.00 & higher per gal

arlene

Dennis wrote:

> It's a Chevy 350 - I couldn't afford the gas to get past Massachusetts. :-)

>

> DH

>

> Re: [ ] (unknown)

>

> > Gotta wait for Dennis to bring the truck!!!!!! ha ha

> > BTW got my own Marti Gras beads... I got ones with roses on them...

> > One from Pat O'Briens and a lot of the ones they throw!!!! I got a Marti

> > Gras Doll and a few other things..... I am going to hang them around the

> > pool if i gets opened this year......

> >

> > Angel Hugs,

> > Diane

> >

> > May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

> >

> >

> >

> >

> >

> >

[Guest guest]

Diane - Sandi has to do with HepCan & groups

diane214@... wrote:

> Hi Rocco,

> We don't have a live chat on this group. We just chat whenever the

> mood strikes..... Who is Sandy??????? She must have sent you to the

> wrong place.....

>

> Angel Hugs,

> Diane

>

> May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

>

>

>

>

>

[Guest guest]

Hi ,

We still don't have the availability of the larger dosage pills of MTX around here, though it was months ago that I first read about and posted the news approving their manufacture. Hopefully they will be available in other locations soon. That'll make it lots easier for the children. How's Tabitha's right knee? What did the orthopedic surgeon think the best option was? Are they going to do the casting?

Take care,

Georgina

Hello all, i hope everything is good. Tabitha had her appointment yesterday with her rheumy and everything checks out good. But she has been having trouble with her neck bothering her..we are afraid arthur is camping there again now..which she hasn't had that problem since she was about 5 or 6. So he increased her methatrexate to 6 tablets from 4 which it was 5 before we had started remicade,i don't think that he is afraid that the remicade isn't working..i think he just wants to cover all posibilities. So she is going from 12 mgs a week to 15 mgs. which is the highest she has been on. She has never had any stomach problems which is a plus even on 5..hope jumping to 15 mg...it won't start. I had to laugh because he told her after she finishes the pills she has..that they now have it where she can take 1 pill of the methatrexate that will enough mgs. that the 6 pills does; or she can do it by injections..should of seen tabs face..lol..i knew the pills would win out by a longshot. He also gave me a number for an eye specialist aroung where i live who i can call to get her eyes checked..she hasn't had any trouble..he said that it seems that uevitis shows up more in kids under 7 than when they are passed that age but she still has to get it checked once a year.Around the 14th she is to get her dose of remicade again...she enjoys the break at the hospital..gets her away from the house plus the extra attention she gets there..she loves.The doctor, Tab, and I dicussed her right knee(the one replaced that locked in a bent position)well the brace hasn't helped in straightening it..so he is making her an appointment at hershey with the new orthopedic surgeon to see if popping it straight while she is knocked out will be the best solution or a serial cast(a cast every 2 weeks..to where each time her knee and tendons will be straightened slowly) her rheumy thinks that since Tabs knee has been bent like that for a long period of time..her tendons and plus her(i think this is the word)heel cord are wound tight and unlocking it while she is out won't help much with her range of motion. Sorry..i hope i didn't confuse anyone on that..lol...still asleep.Anyways all is well as can be..so i am happy about that!Good luckkaren(tab16..poly)p.s...gave a mother the web address for this list..she has a small daughter who has jra and sees Dr. Groh..i was talking to Dr.Groh about some of yall and he said he has heard so much about this list and how great it is..told him how Georgina works hard and gets us info as does others..he said it is good we have this list..i agree!

[Guest guest]

Hi

Perhaps the best bit of advice I can give you is to visit

<http://www.cholesteatoma.org>. This is a brilliant web site set up

in 1997 (I think) which has collected 443 case studies from people who

have had/have this condition.

Don't be put off by their sometimes quite negative tone (including

mine). Mine was written a few weeks ago when I was at a really low

ebb, and I'd imagine that this is true for quite a large proportion of

the studies. However there are a significant number of positive posts.

As Diane says, all our experiences are slightly different, but having

access to information does make them easier.

Good Luck, and welcome to the group :-)

--

Pete