Re: Digest Number 400

[Guest guest]

Hi,

Sorry I haven't written in so long, but i'm going through my usual depression

stage right now. Also i'm kinda new to this group so i've been reading all

the letters from all of you. We're all so alike, it scares me. I've come to

realize that nobody in this entire world, family, friends, doctors will ever

understand exactly how we feel. I feel like i'm living in a world all by

myself. Just wondering what tomorrow will bring. I wanted to share one

thing with you guys.........due to the Prednisone i've been taking for 16

yrs. now, my bones are really destroyed. The dr. wants to start me on some

kind of hormone replacement I believe it's called...I am 52 yrs. old next

month. However, the transplant drs. say " no way " it's bad for the liver.

Well, I simply answered back..... " why the hell would I want a liver

transplant someday if i'm going to be a cripple? " They had no answer of

course.

I don't understand anything anymore, except being sick really sucks.

I want to apologize in advance if i've offended anyone with this letter, it's

just that I think you people kind of understand me...maybe even just a little.

Well, thanks for listening.........

P.S. Try Actigall for the itching. I itched real bad about 2 yrs. ago. I

started on the Actigall and haven't itched a day since..........

Margo B

Ft. Laud. FL

[Guest guest]

Geri,

I was puzzled when I heard that Walter Peyton had cancer also. But my doctor

had told me that there was a small chance that liver disease can turn into

liver cancer so if Walter Peyton had PBC I suppose it could turn into bile

duct cancer. As far as why some people are transplanted soon after being

listed, it could also be that they have acute liver failure which is priority

1 on the list. Thats how I was transplanted within days. I'm sure geography

has to do with it also if you are a status 2 or less. I'm not claiming to be

an exprt though. Charlene

[Guest guest]

Margo I am sure we all understand how you must feel. You have every

right to be upset. I take Prem-Pro and my Dr. never mentioned it was a

problem.

Pa.

[Guest guest]

Flu shots...I was told by my doctors to be sure to get them each year.as they

tend to vary and we can not afford another attack on our systems....also we

are to get the pneumonia shot. I have no reaction other then a sore arm

afterwards. And as someone said { Geri ??? } it was explained on TV

this year that if this flu combines with one of the new flus they are

worrying about right now....the result will be what they calla Pandamic.....a

horrible one.with many people dying. I do not think any of you want to die

of the flu after fighting so hard with liver disease. So..all..go get your

shots NOW. Joanne

[Guest guest]

Charlene,

Walter Payton's death has shaken a lot of people. I'm grateful for the

clarification of what happened with him. In a perfect world, he would have

gotten a liver right away - but when there aren't enough livers to go

around, as Barbara Ann has pointed out, the medical community has to do

what they hope is best. I wouldn't want to be in a position like that.

I'm so happy for you that you got your transplant right away. It gives

hope to all of us who wonder what will happen if.........................

Take care,

Geri

[Guest guest]

Hi Janie

Welcome to the group. I don't post very often but I wanted to tell you

that I have a tendon problem in my foot. 2 years ago my foot started to

swell and hurt ....did not have an injury. After months of complaining

and a change of PCP I finally had an MRI which showed posterior tibial

tendon inflammation and tearng. Also had joint effusion and bone marrow

edema. Was sent to Pittsburgh to see an orthopedist and as soon as he

looked at the films he asked me if I had seen a rheumatologist! He knew

from the damage that I had some sort of inflammatory process going on.

Anyway had surgery on this foot.....debridement and a tendon transfer

with a bone graft to straighten the foot out. I still have pain and

swelling but he said my foot would have turned completely sideways if I

didn't have the operation. As much grief as the foot has given me it at

least got me a diagnosis because up until that time I just had fatigue

and general aches and pains. Was pretty much being told it was in my

head. Depression! Since then the Pa has shown up in my chest and in my

other foot. Fortunately I have a sitting job, I know I would be in a

bind if I had to stand, but sometimes the sitting is no picnic either. I

also have carpal tunnel in my right hand and I have to write all day

long so I really don't know what the best job is for me to be doing

either. I just keep plugging away until I have to make a decision. I

doubt if social security would consider me disabled, but sometimes the

fatigue alone is disabling. I hope things work out for you. I know it is

tough facing an uncertain future. Just hang in there! There is alot of

knowledge and support in ths group!

P.S.

To Gillian.........love your stories........you can really brighten up

an otherwise miserable day!

[Guest guest]

Hello, Sweet Connie,

I am working offline, while the orders are being packed to be shipped out today, I will be on writing soon, but I saw this message and I had to tell you how precious I think you are. You have no idea how much I appreciate your strong support of me and of Life Lift. It is really touching that you have such a strong belief in Life Lift and want to share it this way.

You really are terrific.

I will be back soon, but I just had to say thanks and send you a huge hug.

Love,

Rashelle

Be sure to check out all of the great specials available on my web sites. Save $30 on the Large Body Wrap package until April 30thVisit us at http://www.lifelift.com or http://www.angelmagic.com. All other web sites belong to distributors, these are my personal web sites.Join our discussion group at LifeLift-subscribeonelist

, Rashelle on lifelift has helped many people who are in wheelchairs for she herself once was in a wheelchair. Rashelle is the person who showed Greer how to do bodyflex. Rashelle has video also for sale. She is working on a video right now to do in a chair. You can join her list and find out more information at onelist. It is called lifelift at onelist. Rashelle web site is LIFELIFT.COM and you can talk to Rashelle yourself at onelist lifelift she writes to us all there. She is not like Greer who never talks to her people. Rashelle always anwers are questions and she has the greatest skin care products to lose cellute and fat. I just love her herbal wraps makes my skin so soft and i have loss inches doing lifelift and using the herbal wrap.Anyway check out le if you want answers to questions and their is a great group at onelist lifetlift. LIFELIFT IS JUST LIKE BODYFLEX EXCEPT IT IS EASIIER AND IT WORKS. Connie

[Guest guest]

Hi Connie,

I have had so much mail to answer the past several days that I was not sure if I had written to thank you for this wonderful message.

If I did, good, you deserve to be thanked over and over again. Your devotion to Life Lift and to me is really touching. I can't tell you how much it means to me.

You are really special!

Love,

Rashelle , le on lifelift has helped many people who are in wheelchairs for she herself once was in a wheelchair. le is the person who showed Greer how to do bodyflex. le has video also for sale. She is working on a video right now to do in a chair. You can join her list and find out more information at onelist. It is called lifelift at onelist. le web site is LIFELIFT.COM and you can talk to le yourselfat onelist lifelift she writes to us all there. She is not like Greer who never talks to her people. le always anwers are questions and she has the greatest skin care products to lose cellute and fat. I just love her herbal wraps makes my skin so soft and i have loss inches doing lifelift and using the herbal wrap.Anyway check out le if you want answers to questions and their is a great group at onelist lifetlift. LIFELIFT IS SIMILAR TO BODYFLEX EXCEPT IT IS EASIIER AND IT WORKS. Connie

[Guest guest]

Hi

My bath bombs do the same thing. I found a recipe for baking powder and

powered sugar and citric acid amd oil bake at the lowest heat in the

oven. Forget it !!! I never had such a mess and I wasted half of them.

When I do make them they crack and get really hard on me too. What is

the problem?? And you are right the are touchy little fellows.

have a great day

debi

Debi s Home Page

[Guest guest]

Please remove me from your list Thank you!

----------

>From: egroups

>egroups

>Subject: Digest Number 400

>Date: Sun, Oct 1, 2000, 3:09 AM

>

>

>You are receiving this email because you elected to subscribe to the

> mailing list.

[Guest guest]

Also, " Doc " is a lady.

[Guest guest]

Also, " Doc " is a lady.

[Guest guest]

Smile, you sure of this Marty?

--- 2byteme@... wrote:

> Also, " Doc " is a lady.

>

>

__________________________________________________

[Guest guest]

Smile, you sure of this Marty?

--- 2byteme@... wrote:

> Also, " Doc " is a lady.

>

>

__________________________________________________

[Guest guest]

Dear : for some time I have been meaning to thank you for this

service--I really appreciate being able to download the articles that

you are able to find concerning CLL. gerald

[Guest guest]

I have been being really hit hard by viruses. Norton catches the viruses

but somehow when I send an email it has a virus attached. I get about 5-6

viruses for every 20 emails I download. People not even in my address book

or in my emails tell me I am sending them a virus and I haven't ever

emailed them. I got a copy of my friend's love letter to his girlfriend but

I cannot email him. I got a call from a HBO clinic in New Zealand telling

me they cannot email me. Many people are calling to tell me their emails

to me are coming back to them.

I did three scans with Norton and my computer shut down each time! I

watched to see when it froze up and it was at

C:\..rd\HPZ\Glue\enu\drivers\Win9x_ME

I did a search for this and found about 6 " Windows\Temp " files containing

this virus and deleted them. Now Norton scans fine.

I hope I don't send the list a virus. Gordon

[Guest guest]

Hi Leighannv..

thanks..just a little correction tho..he (Bob) was my ex-husband..we went way

back to grammar school..our daughter is dealing with lots of guilt cuz she did

not understand how sick he was and thought he was drinking due to the

encephalopathy..the ammonia can make u appear that way..so consequentlly

they had not resolved some issues and it was too late.

I wonder...he was in a wreck when younger and had his spleen removed..maybe

that contributed to his hep progressing so fast..everyone is sooo different in

that respec tho.

This is why it is so important to outreach to those with hep and somewhat in

denial about it. I know i was at first and kept drinking..until i became more

informed..that was 3 years ago and NO DRINKING. But i also see those who by

time they do find out it has already progressed..drinking or not..but there IS

help if you are wiling to put your all into it..even if you are a

non-responder..

you are still giving your liver life 3-5 years and with protease inhibitors

and

other tx's down the pipeline it at least buys some time.

BUT...we must be willing to make a definite lifestyle change.

For me..it has been baby steps...no alcohol, diet changes, exercise, water,

less stress (if possible!!) and all the rest* It can be done...shoot i went

into

isolation for almost 2 years..had to cut loose all my old cronies..now

primarlily

the friends i have are also hepppers.

Whooops....did more babbling than realized..

Again, Leighannv..

thanks for all the good info and knowledge..we must empower ourselves and

advocate to those who need the education (that means doctors also)..BUT we

want to make sure we have the RIGHT info!!!

take care*

...

In a message dated 4/7/03 5:58:55 AM, Hepatitis C

writes:

<< Message: 2

Date: Mon, 07 Apr 2003 00:02:40 -0000

From: leighannv

Subject: Re: Kerry and LeighAnn

Hepatic failure is basic liver failure. It doesn't necessarily mean

Hepatitis caused it. I'm really sorry to hear about your father in

law. That is so sad. I wish they could move faster on this disease

and help stop people from dying of it.

LeighAnn

_________________________________________________________________ >>

[Guest guest]

In a message dated 4/7/03 5:58:55 AM, Hepatitis C

writes:

<< Message: 4

Date: Mon, 07 Apr 2003 02:19:31 -0000

From: leighannv

Subject: Re: How did you find out about your Hepatitis C?

>>

I have just been offered a job with the Vietnam Vets of America as a

Service Representative in California. I will go to DC in June for

their training program and become accredited by the VA to help other

Vets with their claims process and other problems. This is the

opportunity of a lifetime for me and I can't WAIT to get started!!!

Leighannv...

Congratulations** This is quite an honor..and you should be very proud

of yourself. There is SUCH a great need for Vets to get any and all the

help they can and deserve greatly...the 'red tape' is so overwhelming, many

just get lost or give up!! They are entitled to better medical care and

Disability benefits badly..homeless issues, mental health..it all goes into

the 'mix'.

You sure have the enthusiasm for this..can hear it in your typing!!

I would say they picked the right person for this job*

I am also from CA..I do know of Theresa from S.F. VA/UCSF..she is

one of the 'good guyz'. I want to thank you also for all your advocating

in our state..WE are fortunate here..lots of good groups and organizations

putting their heart into it.

Did you go to the Silent Vigil in January in Sacramento?

The group i belong to and advocate from O.A.S.I.S. spearheaded this event..

it was so moving and i truly do believe we made some progress.

I am waiting for the Advocacy Certification Program and Train the Trainer

Workshop in Oakland to start..so i can take the course and get my

certificate. I guess then i will be part of the 'HepSquad' !!

btw, Congrats on 5 years sober!! I did about same as you..drank, went for

hep test, drank..not much was said to me..then went in for appt. and was

told.. " cuz you are still binge drinking..I think i should do a biopsy on you "

That was a 'wake-up' and i QUIT..and had biopsy also.

take care*

.

[Guest guest]

Hey Grace*

it is good to hear from you!

Yes..this is me from the 'island''!!

I am still involved with O.A.S.I.S...we went to Sacramento for the 'Silent

Vigil'

it was so moving..and hearing my ex/H's name called and other friends was

very powerful..sadly we had so many names, ran out of time..We wanted to

make sure we met with our local Congressmen in the State Bldg..that came off

well. I met Jim from Vacaville there and a few others i knew only from

internet.!

We are now in the processs of making a current Video about Hep C..using the

patients from O.A.S.I.S. and Dr. Sylvestre..she did one a few years ago.but

so much as changed; having the 'Visual' learning from watching a Video can

be really helpful and more understandable for 'newcomers'..the Videos will be

free to all who request them.

Soooooo.....what is up with you?? Are you finished with tx? Almost i am

sure!!

How has and is that going? Please update me okay. I remember how organized

i thought you were..found out you had hep c, got your ducks lined up..and then

just DIT IT* I always have admiration for those who know just what they want

and DO IT!! especially with tx!! But having 'that' bit of extra support

truly makes

a difference also..hmmmm...can really test ALL relationships..family, et al.

You take care*

-Sue

In a message dated 4/7/03 5:58:55 AM, Hepatitis C

writes:

<< Message: 10

Date: Mon, 07 Apr 2003 07:19:11 -0000

From: " amazing_grace10 " <amazing_grace10@...>

Subject: CSue...

Hi - is that you from Alameda? If yes, HI! Long time

since I've talked to you. I was on HepSingles for awhile and left

there some time ago. I hope all is going with you and at O.A.S.I.S.

Take care,

Grace

>>

[Guest guest]

Hi Pam*

i think about you..but you are a very busy..like what else is new*

I have not been getting bumped off Delphi lately so i need an update

on where chats are.

Yea..hepsingles..and before THAT..listbot, right?

Hope things are going well for you..and are feeling well*

thanks 'dropping me a line' !!!!

take care*

..

In a message dated 4/7/03 5:58:55 AM, Hepatitis C

writes:

<< Message: 15

Date: Mon, 7 Apr 2003 05:17:52 -0400

From: " *~PeachStatePam~* " <figment@...>

Subject: CSue...

I wanted to say HEY to CSUE too :-) I KNOW it is the same one from

HepSingles.......... so nice to see you here! Still can't believe

just cruised in and pulled the plug on that one........ oh well.......

onward and upward!

Peace and Love,

Pam >^..^<

Dogs come when they're called. Cats take a message and get back to you. --

Missy Dizick

>>

[Guest guest]

I really hate to ask a question that everybody probably knows the answer to

already but..........

What is O.A.S.I.S.?

Joalle

" Life is what happens when you are busy making other plans " Lennon

CSue...

Hi - is that you from Alameda? If yes, HI! Long time

since I've talked to you. I was on HepSingles for awhile and left

there some time ago. I hope all is going with you and at O.A.S.I.S.

Take care,

Grace

>>

[Guest guest]

Gennafer,

I haven't heard you say anything negative about your surgeon or his office in

the whole time I've known you. I think you've had as much as you can take

and I think you should write him a letter and tell him how you feel. I also

think you can tell people who ask you about your experience with your surgeon

that you weren't given the after care you were promised and you decided to

get aftercare elsewhere without going into any more detail than that. People

on the boards tend to get defensive if you say anything negative about any of

the surgeons and even that will upset someone.

The stomach is such a sensitive organ that some of us have problems finding

proper restriction from day to day. Some of us hour to hour! And fill

levels....eek...that's a whole nother nightmare for some of us. But that is

all stuff most of us have come to understand by now.

Take action. Write your surgeon. If he doesn't write or call you back go

over his head and make a complaint. You are fully within your rights to do

so no matter how anyone on these boards feels about it. Take your health in

your own hands and consider yourself starting over as of now. I know you

have a different attitude now having gone through what you have gone through.

I know you can do it! You will make this work.

See you Saturday girlfriend!

Cheri in Amboy

[Guest guest]

dear group

my name is debbey, i am in michigan and i found your group on . i am

supposed to have a half knee replacement and wondered if anyone here has any

experience with this surgery.they couldn't schedule me until october but i am on

a waiting list (3 ahead of me) to have it done if there is a cancellation. this

just floored me. i've never heard of such a long wait but this is normal so they

tell me???

thanks for any information you can give me on your experience with this

operation.

sincerely

debbey

michigan

dbal773939@...