this is probably more to you, Frank...than to the list

[Guest guest]

anybody want to ask me why I DO NOT WANT TO TRY CONVENTIONAL TREATMENT!!

 

I have no one to take care of me...don't get around so very well, not even in my

own home. Can't afford to buy *GREAT* food, have to get by on what I can

afford...now I can't even cook it in the microwave. Used to cook my brown rice

in a 2 quart bowl...same old ratio rice to water. Add a whole onion and maybe

some herbs. Some days some meat and most days a frozen veggie. Even when I'm

really sick and can hardly move I can usually get to the fridge for my bowl. One

thing to be said for the microwave is it does NOT burn food. You can set the

timer and it will shut off.

Have to pay a hundred bucks a month to the pud for water I can't drink. Nothing

is grown locally (growing season is aobut 2 months at best) and even at the

natch foods store, the veggies are not looking so good...so I have to rely on

supplements for nutritional support.

But boy oh boy...I've found a web site that will get me the current treatment

for free.

I get so discouraged sometimes!

Had a fone conversation with a shrink today. Mine is retiring and has refered

his patients to a collegue at the University of Nevada/Reno. He told me that I

had violated the patient/doctor contract my stopping my meds and missing the

appointment in person. So sorry I am not one of the favored patients with a

brand new car that goes where you want it to and you don't have to worry about

it breaking down. I need my car around town every week (not every day..I can't

go out every day..takes too much out of me to go out twice a week, but sometimes

I have to).

Now..by myself and with no insurance but medicare..I have to find a new shrink

or risk losing my disability. Terrific. And is a new shrink going to understand

that I'm trying to battle the depression with natural things and support??? I

think not.

And speaking of insurance..oh lord, the old mortgage company sold the mortgage

to a different company...and I have to find new homeowners insurance. And I'm

not sure how they're going to want that financed. I can't possibly pay a full

year in advance, so if they won't let the escrow acc't pay it out...I could lose

my house. swell.

Sorry to burden the list...and Frank I'll understand completely if you don't

publish this!!

~mk

~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

 

-

a hep-c story......

*~PeachStatePam~*

figment@

Sunday, May 25, 2003 4:00 AM

Pam's Story

 

 

I try not to tell my story very often as I don't want to scare any *newbies* off

of treatment but remember that things have improved *GREATLY* since 1999. I do,

however, like to warn that if you have prior LUNG problems you are NOT a good

candidate for treatment (and I wish Schering Plough would do the same). I also

encourage people NOT to drink just distilled water as that can whack out your

electrolytes and didn't help my situation either. Anyway, briefly, I am Pam,

55, now in Georgia, and was diagnosed in June 1997. I had a biopsy that showed

Grade 3, Stage 2 at that time (I am now cirrhotic). It was recommended that I

quit my job and move back to Florida (from Colorado) to be near family while I

did combo treatment which was about to be FDA approved (Dec. 1998). I was very

sick from the very first injection. I started Feb. 15, 1999 but I persevered as

we have no other treatment available and you always think you WILL be the one

that gets cured :-) At week 17, I wound up

in the Intensive Care Unit for a month and was on life support for 2 of those

weeks (May 30, 1999). My labs were so low that I had to have four units of

blood (now I worry about Hep G or something else they don't have a test for

yet!) I had my fifth bout with interstitial lung disease and atypical

pneumonia at that time and my second bout with Legionnaires Disease. These are

very *flukey* things to happen to someone unless you already had that happen

four times before for the pneumonia's and once before for the Legionnaires

-which I did -and should never have been given Interferon in the first place.

They say I am the only person in America to have had Legionnaires Disease TWICE

:-( Anyway, it is now over 3 years later and I am STILL having side effects

from the treatment and *odd* things wrong with me that I never had prior. My

vision is still affected, my lungs are much worse, I must sleep with oxygen

every night, my legs are constantly in pain, I have right sided

(liver?) pain from time to time, I am extremely fatigued, I now have hepatic

encephalopathy (so it didn't slow the progression down at all), headaches,

dizziness, skin problems, low platelets, so many things that I did NOT have

prior to treatment. I am doing herbs and exercise (yoga) and I credit that with

keeping me alive! Plus I try to maintain a very optimistic and stubborn

attitude! LOL I spent 17 months trying to get SSDI and my first denial came

while I was ON life support so I encourage anyone that is starting the process

to GET A LAWYER as you cannot do it by yourself very easily! That is my story

and I am sticking to it LOL and PLEASE don't let this dissuade anyone from

trying treatment. My docs say I was one in a million! I have a wonderful

local support group that meets once a month and I try to never miss a meeting as

you can't do any better than *real life hepper hugs* :-) Because of that

support group, I am now on the board at http://www.HEALSofNGA.org

and try to be of *some help* to them as I do want to *give back* anyway that I

can. I also have a great links page at

http://www.diaccom/~ekwall2/hepchat/links.shtml that takes you to many groups

that I moderate as well as many other wonderful online support groups and

informative websites. Well, you asked for it and you got it......... my little

story ;-) If anyone wants to write to me please feel free to do so at

figment Take care of yourselves and each other!

 

Peace and Love,

 

·´¨¨)) -:¦:-

¸.·´.·´¨¨))

((¸¸.·´ ..·´ -:¦:-Pam

-:¦:- ((¸¸.·´*

 

" Until one has loved an animal, a part of one's soul remains unawakened " -

Anatole France

~~~~~~~~~~~~~~~~

~~~~~~~~~~~~~~~~

UPDATE:

Well now I am 56 and living back in Florida :-) I do think the 17 weeks

slowed down the progression a little or I wouldn't still be here :-) About

the only other thing that has changed is that my platelets have gone up a

little....... they hover at low normal........but all the rest of the *side

effects* are still lingering 5 years later and I do still sleep with oxygen and

get SOB just climbing stairs. I have moved from Board member to Vice President

of HEALS of North Georgia, I started another website at

http://www.HEALSofNFL.bravehost.com (I hope to start a nonprofit HEALS in

Florida at some point), I helped start two new support groups recently in

Brewton, Alabama and Moultrie, GA (and websites for both) and hope to start a

second support group in Tallahassee Florida around October. I commute back to

my *home* support group in Woodstock GA each month, am active with the Hep C

Advocacy Group in Atlanta, and the Viral Hepatitis Strategic Planning Committee.

I went to DC

in December for the Viral Hepatitis Roundtable but haven't been to a March on

Washington yet but definitely plan to be there next JUNE! :-) WOW...... that

was a long read LOL Take care!

 

 

 

 

http://pets.care2.com/

 

http://www.theanimalrescuesite.com

 

" It is impossible to defeat an ignorant man in argument. " -- William G. McAdoo