Re: migraines and sleep and stuff

[Guest guest]

<<Even he said, though, that both were about the same when push came to shove.

>>

They are. You can't believe everything you read. If one drug is established as

one thing, the second drug has to be established as something else, new and

improved. So of course they are going to say they stay in the body longer,

better tolerated, etc.

Gotta read between the lines as they say.

<<Any side effect medications, though, such as Neupogen, Procrit, etc. I will

have to absorb myself>>

My whole 48 weeks on treatment, none of my labs went out of spec. Some do, some

don't. Not a lot of people have to use those drugs.

Let us know what you decide!

Alley

[Guest guest]

Hi Alley. I've been away from computer for a few days (haven't been on-line

much), and I'm reading emails randomly tonight! I've come to the decison

(haven't advised my doc or my family yet) to give treatment another try. My

son is coming home for a visit at the end of June for another two weeks, and

I've decided that -- after his departure in mid-July and " family visits " (his

father is coming up, his aunt, etc), I'm going to contact the GI doc and advise

him I want to give it another try. After I talk to my doc, I will advise my

family of my plans.

Last week I began walking 2 miles twice daily (once in the a.m. and once in

the p.m.). I just said to myself (as I began feeling dragged out again)

" get up and get moving and get ready " -- lol. The vigorous walking does

improve my energy, and it might also help some with this slight edema I've been

feeling lately. In fact, I'm getting ready to head out now for 4 laps!! I

told my friend today I might even give up smoking. I would LOVE to, but I swear

-- it's one habit I cannot seem to break. I've gotten off everything

" addicting " EXCEPT cigarettes. I'm very addicted to those things. I remember

asking

my GI doc about smoking (just prior to treatment last night), and he said " if

you're going to quit, you sure as heck don't want to quit DURING treatment "

-- lol. I'm pretty healthy in spite of my smoking (well... I should say that

smoking hasn't YET caused me to be short of breath on exertion). What a

nasty habit! I've quit many bad habits, but smoking has always been a doozy

for

me to give up. I have quit twice (each time for year), but this time -- I've

been smoking for the last 10 years. When I walk and exercise, I don't want

to smoke, though (or for at least a few hours afterwards), But dang if I don't

absolutey LOVE those things with with a.m. coffee --- argggg.

" Dear God -- please help me give those nasty sticks UP " !

Have a great night.

In a message dated 6/16/2004 12:08:32 PM Eastern Standard Time,

alleypat@... writes:

> My whole 48 weeks on treatment, none of my labs went out of spec. Some do,

> some don't. Not a lot of people have to use those drugs.

>

> Let us know what you decide!

>

> Alley

>

[Guest guest]

Hi Alley. I've been away from computer for a few days (haven't been on-line

much), and I'm reading emails randomly tonight! I've come to the decison

(haven't advised my doc or my family yet) to give treatment another try. My

son is coming home for a visit at the end of June for another two weeks, and

I've decided that -- after his departure in mid-July and " family visits " (his

father is coming up, his aunt, etc), I'm going to contact the GI doc and advise

him I want to give it another try. After I talk to my doc, I will advise my

family of my plans.

Last week I began walking 2 miles twice daily (once in the a.m. and once in

the p.m.). I just said to myself (as I began feeling dragged out again)

" get up and get moving and get ready " -- lol. The vigorous walking does

improve my energy, and it might also help some with this slight edema I've been

feeling lately. In fact, I'm getting ready to head out now for 4 laps!! I

told my friend today I might even give up smoking. I would LOVE to, but I swear

-- it's one habit I cannot seem to break. I've gotten off everything

" addicting " EXCEPT cigarettes. I'm very addicted to those things. I remember

asking

my GI doc about smoking (just prior to treatment last night), and he said " if

you're going to quit, you sure as heck don't want to quit DURING treatment "

-- lol. I'm pretty healthy in spite of my smoking (well... I should say that

smoking hasn't YET caused me to be short of breath on exertion). What a

nasty habit! I've quit many bad habits, but smoking has always been a doozy

for

me to give up. I have quit twice (each time for year), but this time -- I've

been smoking for the last 10 years. When I walk and exercise, I don't want

to smoke, though (or for at least a few hours afterwards), But dang if I don't

absolutey LOVE those things with with a.m. coffee --- argggg.

" Dear God -- please help me give those nasty sticks UP " !

Have a great night.

In a message dated 6/16/2004 12:08:32 PM Eastern Standard Time,

alleypat@... writes:

> My whole 48 weeks on treatment, none of my labs went out of spec. Some do,

> some don't. Not a lot of people have to use those drugs.

>

> Let us know what you decide!

>

> Alley

>

[Guest guest]

Smoking...it's a horrible thing to kick. When I had my bout with anemia and

bronchitis I quit for 5 weeks...because I couldn't breathe to smoke. But what

happened...when meds got me to where I could breathe again...all of a sudden at

night after work I'd kick back and really wanted a cig...so of course, I am

still a smoker.

Re: migraines and sleep and stuff

Last week I began walking 2 miles twice daily (once in the a.m. and once in

the p.m.). I just said to myself (as I began feeling dragged out again)

" get up and get moving and get ready " -- lol. ...I

told my friend today I might even give up smoking. I would LOVE to, but I swear

-- it's one habit I cannot seem to break.

[Guest guest]

In a message dated 6/13/2004 9:16:47 AM Central Daylight Time,

jtwagers7@... writes:

> Hi Alley. I'm geno 1a. Stage 3 / grade 2.

[Guest guest]

In a message dated 6/13/2004 9:16:47 AM Central Daylight Time,

jtwagers7@... writes:

> Hi Alley. I'm geno 1a. Stage 3 / grade 2.

... I am about same geno.. etc.. i felt better for some time after first

treatment.. but dr at Mayo .. said wait on trying other.. cuz of what went

thru with first time.. ... then some symptoms came back and i was doctoring

with local GI.. he immediately offered treatment.. but this time it did not help

near as much and a year later.. symptoms back to " bad " again... dont rush!!

achy ,

Dawn

[Guest guest]

In a message dated 6/13/2004 8:37:53 PM Central Daylight Time,

claudineintexas@... writes:

>

> It's to be expected that you will read and hear mostly from people

> who do not respond well, who have a difficult time, and from those

> who either don't respond or who relapse. It's normal - those are the

> people needing the most support, and sometimes it just helps to let

> off a little steam, or to complain. There's nothing wrong with that!

> But there are LOTS of people who deal well with treatment, and there

> are many many people who are responding to the peg/riba treatment.

> And, while some people do have permanent problems resulting from the

> treatment itself, they are the minority. You have to keep this in

> perspective when making a decision whether to treat or not to treat.

> You're not usually going to hear from the people who DON'T have any

> long-term problems, and the people who do have a sustained viral

> response often disappear from our lives, and so we forget all the

> good stories! It's one thing for someone with little or no fibrosis

> (like me) to decide not to treat right now, but anyone with advanced

> fibrosis should really consider treatment. Even if you don't have a

> viral response to treatment it might slow down or stop your fibrosis

> from progressing, maybe even reversing some damage, allowing you more

> time to wait for something more effective to come along. And, with

> the peg/riba treatment there is actually a good chance you will

> respond. Your doctor sounds willing to treat side effects

> (important), and if you start out treatment in good shape (no dental

> problems etc.) chances are you will do fine, even if it is hard and

> no fun! Treatment may be very hard, but advancing liver disease and

> cirrhosis can be much harder.

>

> Good luck!

> Claudine

>

>

I agree, Claudine,

Those who respond well and seem to clear .. dont nee the support group.... i

am glad my local support group has an elderly lady that contracted hep c thru

a blood transfusion and now has been clear for at least 2 years.. but she

still comes to all the support group meetings.. she came with her hus for a long

time. .her hus was so dear to her and supported her all the way thru.. then

about a year or more ago .. he died of heart problem... amazing man.. amazing

couple.. so loving and devoted.. made me a believer.. LOL.. anyway .. what i

started to say here was that i have a cousin.. actually 2 brothers .. that

contracted hep c.. one chose treatment .. other hides fact he has it... the one

went

thru treatment and been clear for a good 2 or more years also... so .. hey ..

i am glad mayo and other GI s are now paying attn more to the genotyping and

tracking results.. to find out what treatment works for what people...

ever hopeful,

Dawn

[Guest guest]

<<I should say that

smoking hasn't YET caused me to be short of breath on exertion>>

you will probably get short of breath on treatment, regardless of whether you

smoke or not

Good luck on your treatment. Be sure to read all the side effects, both

permanent and temporary, that it can or might cause and go in with your eyes

open.

I hope you don't end up like me, and wish you'd never done treatment, filing for

disability afterward.

Alley

[Guest guest]

<<I should say that

smoking hasn't YET caused me to be short of breath on exertion>>

you will probably get short of breath on treatment, regardless of whether you

smoke or not

Good luck on your treatment. Be sure to read all the side effects, both

permanent and temporary, that it can or might cause and go in with your eyes

open.

I hope you don't end up like me, and wish you'd never done treatment, filing for

disability afterward.

Alley

[Guest guest]

Hey Dawn. Thanks for the caution. I was in a REAL hurry to treat (when I

was symptomatic) last year, and there were truly things I needed to get ironed

out in my personal life before I began treatment last year. Things are more

ironed out than they were (though not totally). Seems, as the saying goes

-- " if its not one thing; it's another " . lol.

I'm sorry your symptoms are back to " bad " again. Mine also started coming

back (I think it's the hot weather and some stressors going on). As I saw you

say in one post " sitting at the computer is not always a good thing "

(something to that affect). I agree, and so........ hehehehe.......I'm going

to get

up from here and go DO SOMETHING other than hit " read " or go research

something else. Overload! But, then again, I don't know what I'd do if I

didn't

have on-line support. Balance .

Hang in there. Glad to see you posting. Thought you had gotten lost! I

saw you mention something about an abusive relationship . Ahhh... .Been there

done that, too. That's why I'm doing treatment " alone " , but -- as you have

done -- I, too, have a very good friend now (including all those here) who I

know I can depend on if I need help. We are good for each other lately and

have been very supportive of each other in some personal situations lately.

It's a friendship that is priceless to both of us, and it's not one I have to

worry about " getting deeply involved in " in order for it to remain. We're best

buddies. He is kind of scared, too, about my treating and keeps saying

" you're too damn mean to die, and I sure ain't gonna let you die even if you

soften up some " LOL! He's a God send, I do believe.

Hmmmm..... a helicopter is flying really low over my house and neighborhood

right now -- they just keep circling. LOL. Weird. They must be looking for

someone or something cuz they sure are close to the ground and are going over

and over !!! I gotta go outside and see what's up! Bye!

Bye for now.

In a message dated 6/17/2004 4:42:22 AM Eastern Standard Time,

Dawnbeliever@... writes:

> ... I am about same geno.. etc.. i felt better for some time after

> first

> treatment.. but dr at Mayo .. said wait on trying other.. cuz of what went

> thru with first time.. ... then some symptoms came back and i was doctoring

> with local GI.. he immediately offered treatment.. but this time it did not

> help

> near as much and a year later.. symptoms back to " bad " again... dont rush!!

>

> achy ,

> Dawn

>

[Guest guest]

I must have missed it! LOL. " Icky Patooey " " Menal Puke " ! I'm still

trying to find out about that daggone helicopter!! I've written some intended

icky patooey notes myself and felt GOOD when I wrote them and then -- when I

reread them -- I would say to self " golly, you were a real bi*** " on that one "

LOL. The " piss and vinegar " can come out in me sometimes, but -- tell me

one person who can be an angel 24/7!? I will guarantee you that it's not me!

And I don't even have Riba rage yet! It just come natural, I guess :)

I have this little cross-stitched framed saying nearby that says " A true

friend is a person who likes you even when you act like yourself " . So my

friend, let it all hang out!

I'm still laughing at the " mental puke " .

I think the helicopter has gone . I'm still going outside if I can pull

myself away from this computer! Bye for now.

In a message dated 6/17/2004 2:59:59 PM Eastern Standard Time,

alleypat@... writes:

> I just reread my post and it sounded really down and icky and that's not

> how I meant it! ick!!! patooey!!

>

> I must have had a mental puke or something. My apologies.

>

> Alley

>

>

[Guest guest]

I just reread my post and it sounded really down and icky and that's not how I

meant it! ick!!! patooey!!

I must have had a mental puke or something. My apologies.

Alley

[Guest guest]

I just reread my post and it sounded really down and icky and that's not how I

meant it! ick!!! patooey!!

I must have had a mental puke or something. My apologies.

Alley

[Guest guest]

Hi Tatezi. I am so far behind in emails, I didn't even see this one

yesterday. I got so angry last year at our wonderful state's requirements for

" adult

medicaid " and being told by the Adult Medicaid case worker " you make too

much disability to qualify for adult medicaid " . During the application process

(which was very short because the case worked looked at my SSD earnings on the

computer and concluded -- even before I put anything on paper -- that,

according to NC regs for Adult Medicaid, I made $50.00 too much per month to

qualify

and there would therefore be no need for me to fill out the application for

Adult Medicaid. I asked " well, can't you ask me if I have medical expenses

that might make me $50.00 per month poorer and therefore poor enough to qualify

for some assistance other than this Medicare I've got with SSD that covers no

Rx drugs for treating this chronic illness I've got? " She kept insisting

she could not do anything to make me qualify. I never understood her

explanation, and she never could give me a good explanation (I don't think she

quite

understood it, either), but she kept insisting that -- in North Carolina -- I

made too much disability to qualify for adult medicaid regardless of the cost of

treating HCV. I felt so disgusted with the explanation, I stopped pressing

for an answer and instead walked out and thought to myself " screw treatment

and the potential cost " . She did tell me that I could fill out some

applications to possibly get some assistance from donations from local church

groups,

and she gave me a list of those groups, but I felt that I would be too

embarrassed to ask for hand-outs from such kind places when I didn't even go to

church and had never made donations to church groups. I've donated lots to

Salvation Army and volunteered during disasters, but I've not donated or

volunteered

to church organizations, and so -- something about taking that route seemed

wrong to me.

I left Social Services that day, looking into the future (treatment) and saw

nothing but $$$$$$$ for my illness and (since my dad had offered to pay the

cost of whatever Medicare didn't cover) potentially wiping much of his assets

out. I felt there was no way I could do that, and I still feel that way. He

had already paid for my peridontal care, which -- before it was all over with

-- was over a thousand dollars, and those checkups and deep cleanings and

scalings would have to continue if I treated again. I pondered my options, and

then I thought about a possibly brilliant plan -- lol (one my shrink was

vehemently opposed to and said " no way " ).

Here's what I thought about doing to find a way to pay for Rx drugs related

to HCV treatment. I thought " OK. You have a preexisting condition that's

going to disqualify you from ANY other health insurance other than Medicare or

Adult Medicaid. Since you're on disability and Medicare that pays 80% of your

healthcare but pays for no Rx drugs, and since you make 50.00 too much per

month on SSD to qualify for Adult Medicaid, force yourself to go back to work

doing something, report all your earnings to SSD, let them yank you off your

disability and Medicare, and THEN -- when you go so far in debt treating your

HCV

-- you will then qualify for assistance with all programs because you will

never qualify for disability and Medicare again " .

When I presented this idea to my shrink last year, I was sick as a dog, had

bleeding, infected gums, had just been released from the ER, had just been

pulled from treatment, and was and crying my eyes out. She asked me if I

wanted to go spend a few days in the psych unit. I told her no -- I'm just

going

to forget about treating HCV and live with this sh**. "

I still don't know what to do. Last year, I asked every single doctor and

resource I know of (Social Services is the only place I know to go) about my

illness, about the anticipated cost of treating it, and the fact that I can't

afford it, and about my desire to get lined up to get some help paying for drugs

that may be prescribed if do the treatment. I haven't been to Social

Services since last year. I got so depressed with the process last year (it was

exhaustive with dead ends everywhere, it seemed) that I finally gave up. I

don't

know where to turn, and I get very depressed when I think that my opting to

treat might deplete my 82-yr old dad's hard earned money if I can't find

assistance through some other program. I can't bring myself to do that. So...

even though I feel like I should attempt treatment again, I feel kind of

paralyzed, still, about that decision. Ahhh..... it'll come to me. There is

an

answer somewhere, and it'll eventually hit this brain before long -lol.

I do need to begin researching this stuff again (assistance). Things have

changed since last year. I did get my $600.00 Medicare Discount Drug card

(or rather the booklet that explains how I go about getting that discount).

I'm telling ya -- it takes a genius to figure it out, and it's the most

bull-crapping (scuze my mouth) thing I've ever seen in my life. It's reams of

information that no one can interpret for a measly 600.00 bucks per year

discount

that's all going to change by March 2005. My local pharmacies do not

participate, and so -- I would have to travel 50 miles round trip each month to

" participate " . I would have to pick up one prescriptions at one pharmacy and

another at another pharmacy because each pharmacy does not cover both drugs. I

studies that booklet, and I got the calculator out and concluded that -- when

all

is said and done -- I would SAVE money continuing to pay full price at my

local pharmacy for the two prescriptoin drugs I get (Toprol and Valium).

Valium,

which I have to refill every month, is about 15.00 per month. Toprol, which

I'm given a three month Rx for, is 75.00 for three months worth. I feel

sorry for the elderly who are on MANY medications and cannot figure their

" discount " out. It's impossible to figure it out.

Anyhow......thanks for your input and listening, and if you can think of

anything I might be able to do with the system in preparation, let me know. I

don't want to give up, and there is bound to be a way I can get assistance for

Rx

drugs related to HCV without depending on my family to pay full price. Maybe

there's not. Maybe I am in that " zone " .

You have a great day.

In a message dated 6/16/2004 9:11:29 AM Eastern Standard Time,

tatezi@... writes:

> ...

>

> Remember that doctors promote whichever drug they are getting kickbacks

> from...don't ever completely trust doctors.

>

> I didn't start having platelet or low WBC counts until the last 6ish weeks

> of treatment.

>

> Find out if you have a county, state or city public health system. If you

> do, use them. Plan on spending a day there and take something to drink and

> reading materials. It's a hastle to go through the initial process (took me 4

> trips and spending the day there) but you will be eligible. Then you can get

> your prescriptions free. Use the system! That's why it's there.

>

> Tatezi

[Guest guest]

Hi Tatezi. I am so far behind in emails, I didn't even see this one

yesterday. I got so angry last year at our wonderful state's requirements for

" adult

medicaid " and being told by the Adult Medicaid case worker " you make too

much disability to qualify for adult medicaid " . During the application process

(which was very short because the case worked looked at my SSD earnings on the

computer and concluded -- even before I put anything on paper -- that,

according to NC regs for Adult Medicaid, I made $50.00 too much per month to

qualify

and there would therefore be no need for me to fill out the application for

Adult Medicaid. I asked " well, can't you ask me if I have medical expenses

that might make me $50.00 per month poorer and therefore poor enough to qualify

for some assistance other than this Medicare I've got with SSD that covers no

Rx drugs for treating this chronic illness I've got? " She kept insisting

she could not do anything to make me qualify. I never understood her

explanation, and she never could give me a good explanation (I don't think she

quite

understood it, either), but she kept insisting that -- in North Carolina -- I

made too much disability to qualify for adult medicaid regardless of the cost of

treating HCV. I felt so disgusted with the explanation, I stopped pressing

for an answer and instead walked out and thought to myself " screw treatment

and the potential cost " . She did tell me that I could fill out some

applications to possibly get some assistance from donations from local church

groups,

and she gave me a list of those groups, but I felt that I would be too

embarrassed to ask for hand-outs from such kind places when I didn't even go to

church and had never made donations to church groups. I've donated lots to

Salvation Army and volunteered during disasters, but I've not donated or

volunteered

to church organizations, and so -- something about taking that route seemed

wrong to me.

I left Social Services that day, looking into the future (treatment) and saw

nothing but $$$$$$$ for my illness and (since my dad had offered to pay the

cost of whatever Medicare didn't cover) potentially wiping much of his assets

out. I felt there was no way I could do that, and I still feel that way. He

had already paid for my peridontal care, which -- before it was all over with

-- was over a thousand dollars, and those checkups and deep cleanings and

scalings would have to continue if I treated again. I pondered my options, and

then I thought about a possibly brilliant plan -- lol (one my shrink was

vehemently opposed to and said " no way " ).

Here's what I thought about doing to find a way to pay for Rx drugs related

to HCV treatment. I thought " OK. You have a preexisting condition that's

going to disqualify you from ANY other health insurance other than Medicare or

Adult Medicaid. Since you're on disability and Medicare that pays 80% of your

healthcare but pays for no Rx drugs, and since you make 50.00 too much per

month on SSD to qualify for Adult Medicaid, force yourself to go back to work

doing something, report all your earnings to SSD, let them yank you off your

disability and Medicare, and THEN -- when you go so far in debt treating your

HCV

-- you will then qualify for assistance with all programs because you will

never qualify for disability and Medicare again " .

When I presented this idea to my shrink last year, I was sick as a dog, had

bleeding, infected gums, had just been released from the ER, had just been

pulled from treatment, and was and crying my eyes out. She asked me if I

wanted to go spend a few days in the psych unit. I told her no -- I'm just

going

to forget about treating HCV and live with this sh**. "

I still don't know what to do. Last year, I asked every single doctor and

resource I know of (Social Services is the only place I know to go) about my

illness, about the anticipated cost of treating it, and the fact that I can't

afford it, and about my desire to get lined up to get some help paying for drugs

that may be prescribed if do the treatment. I haven't been to Social

Services since last year. I got so depressed with the process last year (it was

exhaustive with dead ends everywhere, it seemed) that I finally gave up. I

don't

know where to turn, and I get very depressed when I think that my opting to

treat might deplete my 82-yr old dad's hard earned money if I can't find

assistance through some other program. I can't bring myself to do that. So...

even though I feel like I should attempt treatment again, I feel kind of

paralyzed, still, about that decision. Ahhh..... it'll come to me. There is

an

answer somewhere, and it'll eventually hit this brain before long -lol.

I do need to begin researching this stuff again (assistance). Things have

changed since last year. I did get my $600.00 Medicare Discount Drug card

(or rather the booklet that explains how I go about getting that discount).

I'm telling ya -- it takes a genius to figure it out, and it's the most

bull-crapping (scuze my mouth) thing I've ever seen in my life. It's reams of

information that no one can interpret for a measly 600.00 bucks per year

discount

that's all going to change by March 2005. My local pharmacies do not

participate, and so -- I would have to travel 50 miles round trip each month to

" participate " . I would have to pick up one prescriptions at one pharmacy and

another at another pharmacy because each pharmacy does not cover both drugs. I

studies that booklet, and I got the calculator out and concluded that -- when

all

is said and done -- I would SAVE money continuing to pay full price at my

local pharmacy for the two prescriptoin drugs I get (Toprol and Valium).

Valium,

which I have to refill every month, is about 15.00 per month. Toprol, which

I'm given a three month Rx for, is 75.00 for three months worth. I feel

sorry for the elderly who are on MANY medications and cannot figure their

" discount " out. It's impossible to figure it out.

Anyhow......thanks for your input and listening, and if you can think of

anything I might be able to do with the system in preparation, let me know. I

don't want to give up, and there is bound to be a way I can get assistance for

Rx

drugs related to HCV without depending on my family to pay full price. Maybe

there's not. Maybe I am in that " zone " .

You have a great day.

In a message dated 6/16/2004 9:11:29 AM Eastern Standard Time,

tatezi@... writes:

> ...

>

> Remember that doctors promote whichever drug they are getting kickbacks

> from...don't ever completely trust doctors.

>

> I didn't start having platelet or low WBC counts until the last 6ish weeks

> of treatment.

>

> Find out if you have a county, state or city public health system. If you

> do, use them. Plan on spending a day there and take something to drink and

> reading materials. It's a hastle to go through the initial process (took me 4

> trips and spending the day there) but you will be eligible. Then you can get

> your prescriptions free. Use the system! That's why it's there.

>

> Tatezi

[Guest guest]

Hi Tatezi. I am so far behind in emails, I didn't even see this one

yesterday. I got so angry last year at our wonderful state's requirements for

" adult

medicaid " and being told by the Adult Medicaid case worker " you make too

much disability to qualify for adult medicaid " . During the application process

(which was very short because the case worked looked at my SSD earnings on the

computer and concluded -- even before I put anything on paper -- that,

according to NC regs for Adult Medicaid, I made $50.00 too much per month to

qualify

and there would therefore be no need for me to fill out the application for

Adult Medicaid. I asked " well, can't you ask me if I have medical expenses

that might make me $50.00 per month poorer and therefore poor enough to qualify

for some assistance other than this Medicare I've got with SSD that covers no

Rx drugs for treating this chronic illness I've got? " She kept insisting

she could not do anything to make me qualify. I never understood her

explanation, and she never could give me a good explanation (I don't think she

quite

understood it, either), but she kept insisting that -- in North Carolina -- I

made too much disability to qualify for adult medicaid regardless of the cost of

treating HCV. I felt so disgusted with the explanation, I stopped pressing

for an answer and instead walked out and thought to myself " screw treatment

and the potential cost " . She did tell me that I could fill out some

applications to possibly get some assistance from donations from local church

groups,

and she gave me a list of those groups, but I felt that I would be too

embarrassed to ask for hand-outs from such kind places when I didn't even go to

church and had never made donations to church groups. I've donated lots to

Salvation Army and volunteered during disasters, but I've not donated or

volunteered

to church organizations, and so -- something about taking that route seemed

wrong to me.

I left Social Services that day, looking into the future (treatment) and saw

nothing but $$$$$$$ for my illness and (since my dad had offered to pay the

cost of whatever Medicare didn't cover) potentially wiping much of his assets

out. I felt there was no way I could do that, and I still feel that way. He

had already paid for my peridontal care, which -- before it was all over with

-- was over a thousand dollars, and those checkups and deep cleanings and

scalings would have to continue if I treated again. I pondered my options, and

then I thought about a possibly brilliant plan -- lol (one my shrink was

vehemently opposed to and said " no way " ).

Here's what I thought about doing to find a way to pay for Rx drugs related

to HCV treatment. I thought " OK. You have a preexisting condition that's

going to disqualify you from ANY other health insurance other than Medicare or

Adult Medicaid. Since you're on disability and Medicare that pays 80% of your

healthcare but pays for no Rx drugs, and since you make 50.00 too much per

month on SSD to qualify for Adult Medicaid, force yourself to go back to work

doing something, report all your earnings to SSD, let them yank you off your

disability and Medicare, and THEN -- when you go so far in debt treating your

HCV

-- you will then qualify for assistance with all programs because you will

never qualify for disability and Medicare again " .

When I presented this idea to my shrink last year, I was sick as a dog, had

bleeding, infected gums, had just been released from the ER, had just been

pulled from treatment, and was and crying my eyes out. She asked me if I

wanted to go spend a few days in the psych unit. I told her no -- I'm just

going

to forget about treating HCV and live with this sh**. "

I still don't know what to do. Last year, I asked every single doctor and

resource I know of (Social Services is the only place I know to go) about my

illness, about the anticipated cost of treating it, and the fact that I can't

afford it, and about my desire to get lined up to get some help paying for drugs

that may be prescribed if do the treatment. I haven't been to Social

Services since last year. I got so depressed with the process last year (it was

exhaustive with dead ends everywhere, it seemed) that I finally gave up. I

don't

know where to turn, and I get very depressed when I think that my opting to

treat might deplete my 82-yr old dad's hard earned money if I can't find

assistance through some other program. I can't bring myself to do that. So...

even though I feel like I should attempt treatment again, I feel kind of

paralyzed, still, about that decision. Ahhh..... it'll come to me. There is

an

answer somewhere, and it'll eventually hit this brain before long -lol.

I do need to begin researching this stuff again (assistance). Things have

changed since last year. I did get my $600.00 Medicare Discount Drug card

(or rather the booklet that explains how I go about getting that discount).

I'm telling ya -- it takes a genius to figure it out, and it's the most

bull-crapping (scuze my mouth) thing I've ever seen in my life. It's reams of

information that no one can interpret for a measly 600.00 bucks per year

discount

that's all going to change by March 2005. My local pharmacies do not

participate, and so -- I would have to travel 50 miles round trip each month to

" participate " . I would have to pick up one prescriptions at one pharmacy and

another at another pharmacy because each pharmacy does not cover both drugs. I

studies that booklet, and I got the calculator out and concluded that -- when

all

is said and done -- I would SAVE money continuing to pay full price at my

local pharmacy for the two prescriptoin drugs I get (Toprol and Valium).

Valium,

which I have to refill every month, is about 15.00 per month. Toprol, which

I'm given a three month Rx for, is 75.00 for three months worth. I feel

sorry for the elderly who are on MANY medications and cannot figure their

" discount " out. It's impossible to figure it out.

Anyhow......thanks for your input and listening, and if you can think of

anything I might be able to do with the system in preparation, let me know. I

don't want to give up, and there is bound to be a way I can get assistance for

Rx

drugs related to HCV without depending on my family to pay full price. Maybe

there's not. Maybe I am in that " zone " .

You have a great day.

In a message dated 6/16/2004 9:11:29 AM Eastern Standard Time,

tatezi@... writes:

> ...

>

> Remember that doctors promote whichever drug they are getting kickbacks

> from...don't ever completely trust doctors.

>

> I didn't start having platelet or low WBC counts until the last 6ish weeks

> of treatment.

>

> Find out if you have a county, state or city public health system. If you

> do, use them. Plan on spending a day there and take something to drink and

> reading materials. It's a hastle to go through the initial process (took me 4

> trips and spending the day there) but you will be eligible. Then you can get

> your prescriptions free. Use the system! That's why it's there.

>

> Tatezi

[Guest guest]

Hi Tatezi. I am so far behind in emails, I didn't even see this one

yesterday. I got so angry last year at our wonderful state's requirements for

" adult

medicaid " and being told by the Adult Medicaid case worker " you make too

much disability to qualify for adult medicaid " . During the application process

(which was very short because the case worked looked at my SSD earnings on the

computer and concluded -- even before I put anything on paper -- that,

according to NC regs for Adult Medicaid, I made $50.00 too much per month to

qualify

and there would therefore be no need for me to fill out the application for

Adult Medicaid. I asked " well, can't you ask me if I have medical expenses

that might make me $50.00 per month poorer and therefore poor enough to qualify

for some assistance other than this Medicare I've got with SSD that covers no

Rx drugs for treating this chronic illness I've got? " She kept insisting

she could not do anything to make me qualify. I never understood her

explanation, and she never could give me a good explanation (I don't think she

quite

understood it, either), but she kept insisting that -- in North Carolina -- I

made too much disability to qualify for adult medicaid regardless of the cost of

treating HCV. I felt so disgusted with the explanation, I stopped pressing

for an answer and instead walked out and thought to myself " screw treatment

and the potential cost " . She did tell me that I could fill out some

applications to possibly get some assistance from donations from local church

groups,

and she gave me a list of those groups, but I felt that I would be too

embarrassed to ask for hand-outs from such kind places when I didn't even go to

church and had never made donations to church groups. I've donated lots to

Salvation Army and volunteered during disasters, but I've not donated or

volunteered

to church organizations, and so -- something about taking that route seemed

wrong to me.

I left Social Services that day, looking into the future (treatment) and saw

nothing but $$$$$$$ for my illness and (since my dad had offered to pay the

cost of whatever Medicare didn't cover) potentially wiping much of his assets

out. I felt there was no way I could do that, and I still feel that way. He

had already paid for my peridontal care, which -- before it was all over with

-- was over a thousand dollars, and those checkups and deep cleanings and

scalings would have to continue if I treated again. I pondered my options, and

then I thought about a possibly brilliant plan -- lol (one my shrink was

vehemently opposed to and said " no way " ).

Here's what I thought about doing to find a way to pay for Rx drugs related

to HCV treatment. I thought " OK. You have a preexisting condition that's

going to disqualify you from ANY other health insurance other than Medicare or

Adult Medicaid. Since you're on disability and Medicare that pays 80% of your

healthcare but pays for no Rx drugs, and since you make 50.00 too much per

month on SSD to qualify for Adult Medicaid, force yourself to go back to work

doing something, report all your earnings to SSD, let them yank you off your

disability and Medicare, and THEN -- when you go so far in debt treating your

HCV

-- you will then qualify for assistance with all programs because you will

never qualify for disability and Medicare again " .

When I presented this idea to my shrink last year, I was sick as a dog, had

bleeding, infected gums, had just been released from the ER, had just been

pulled from treatment, and was and crying my eyes out. She asked me if I

wanted to go spend a few days in the psych unit. I told her no -- I'm just

going

to forget about treating HCV and live with this sh**. "

I still don't know what to do. Last year, I asked every single doctor and

resource I know of (Social Services is the only place I know to go) about my

illness, about the anticipated cost of treating it, and the fact that I can't

afford it, and about my desire to get lined up to get some help paying for drugs

that may be prescribed if do the treatment. I haven't been to Social

Services since last year. I got so depressed with the process last year (it was

exhaustive with dead ends everywhere, it seemed) that I finally gave up. I

don't

know where to turn, and I get very depressed when I think that my opting to

treat might deplete my 82-yr old dad's hard earned money if I can't find

assistance through some other program. I can't bring myself to do that. So...

even though I feel like I should attempt treatment again, I feel kind of

paralyzed, still, about that decision. Ahhh..... it'll come to me. There is

an

answer somewhere, and it'll eventually hit this brain before long -lol.

I do need to begin researching this stuff again (assistance). Things have

changed since last year. I did get my $600.00 Medicare Discount Drug card

(or rather the booklet that explains how I go about getting that discount).

I'm telling ya -- it takes a genius to figure it out, and it's the most

bull-crapping (scuze my mouth) thing I've ever seen in my life. It's reams of

information that no one can interpret for a measly 600.00 bucks per year

discount

that's all going to change by March 2005. My local pharmacies do not

participate, and so -- I would have to travel 50 miles round trip each month to

" participate " . I would have to pick up one prescriptions at one pharmacy and

another at another pharmacy because each pharmacy does not cover both drugs. I

studies that booklet, and I got the calculator out and concluded that -- when

all

is said and done -- I would SAVE money continuing to pay full price at my

local pharmacy for the two prescriptoin drugs I get (Toprol and Valium).

Valium,

which I have to refill every month, is about 15.00 per month. Toprol, which

I'm given a three month Rx for, is 75.00 for three months worth. I feel

sorry for the elderly who are on MANY medications and cannot figure their

" discount " out. It's impossible to figure it out.

Anyhow......thanks for your input and listening, and if you can think of

anything I might be able to do with the system in preparation, let me know. I

don't want to give up, and there is bound to be a way I can get assistance for

Rx

drugs related to HCV without depending on my family to pay full price. Maybe

there's not. Maybe I am in that " zone " .

You have a great day.

In a message dated 6/16/2004 9:11:29 AM Eastern Standard Time,

tatezi@... writes:

> ...

>

> Remember that doctors promote whichever drug they are getting kickbacks

> from...don't ever completely trust doctors.

>

> I didn't start having platelet or low WBC counts until the last 6ish weeks

> of treatment.

>

> Find out if you have a county, state or city public health system. If you

> do, use them. Plan on spending a day there and take something to drink and

> reading materials. It's a hastle to go through the initial process (took me 4

> trips and spending the day there) but you will be eligible. Then you can get

> your prescriptions free. Use the system! That's why it's there.

>

> Tatezi

[Guest guest]

I know how it goes with emails...they do seem to keep growing, don't they?

If I were you, I'd call the Board of Health where you live and ask them about a

clinic. Don't tell them about meds or the hep. Tell them you are unemployed and

need health care...every one is hip to unemployed in these times. (Don't get me

started on that...everyone will get mad at me.)

If they have a clinic, find out the hours and go camp out. Trust me, it's pretty

miserable but it can pay off. I spent 4 full days hanging out at the County walk

in clinic seeing interns before they finally said yep, you have hep c and need

to see a GI and refered me to the GI clinic. Take plenty of fluids and reading

materials.

If you don't have a Board of Health (most cities have a Board of Health) try

calling Legal Aid and see if they can direct you someplace. They are used to

dealing with poor folks and might be able to direct you.

It's tough to cry poor, but when you are, you have to swallow your pride.

If neither of these pan out, call every place in town that deals with poor

people or homeless people and ask them if they know where you can go for medical

assistance.

If you have to start calling churches, do it. So what if you aren't a church

going person...religious people are supposed to care about all people. That's in

their rules or something (I'm pagan and wouldn't hesitate going to a church if I

had to in order to get assistance).

Another resource might be a food pantry. They might be able to refer you to

someplace.

BTW, valium is very hard on your liver...you might want to think about getting

it changed. I used to take valium and every liver guy I saw said to get off

it...and switched me over to zanax. Just a suggestion...

It's going to take some work, but I can't think of any place that doesn't deal

with poor people needing health care in these days. I'm sure there are resources

to be found...it just takes some effort to find them. Look at it as a full time

job...

Good luck....and swallow your pride...

Tatezi

Re: migraines and sleep and stuff

Hi Tatezi. I am so far behind in emails, I didn't even see this one

yesterday. I got so angry last year at our wonderful state's requirements for

" adult

medicaid " and being told by the Adult Medicaid case worker " you make too

much disability to qualify for adult medicaid " . During the application process

(which was very short because the case worked looked at my SSD earnings on the

computer and concluded -- even before I put anything on paper -- that,

according to NC regs for Adult Medicaid, I made $50.00 too much per month to

qualify

and there would therefore be no need for me to fill out the application for

Adult Medicaid. I asked " well, can't you ask me if I have medical expenses

that might make me $50.00 per month poorer and therefore poor enough to qualify

for some assistance other than this Medicare I've got with SSD that covers no

Rx drugs for treating this chronic illness I've got? " She kept insisting

she could not do anything to make me qualify. I never understood her

explanation, and she never could give me a good explanation (I don't think she

quite

understood it, either), but she kept insisting that -- in North Carolina -- I

made too much disability to qualify for adult medicaid regardless of the cost of

treating HCV. I felt so disgusted with the explanation, I stopped pressing

for an answer and instead walked out and thought to myself " screw treatment

and the potential cost " . She did tell me that I could fill out some

applications to possibly get some assistance from donations from local church

groups,

and she gave me a list of those groups, but I felt that I would be too

embarrassed to ask for hand-outs from such kind places when I didn't even go to

church and had never made donations to church groups. I've donated lots to

Salvation Army and volunteered during disasters, but I've not donated or

volunteered

to church organizations, and so -- something about taking that route seemed

wrong to me.

I left Social Services that day, looking into the future (treatment) and saw

nothing but $$$$$$$ for my illness and (since my dad had offered to pay the

cost of whatever Medicare didn't cover) potentially wiping much of his assets

out. I felt there was no way I could do that, and I still feel that way. He

had already paid for my peridontal care, which -- before it was all over with

-- was over a thousand dollars, and those checkups and deep cleanings and

scalings would have to continue if I treated again. I pondered my options, and

then I thought about a possibly brilliant plan -- lol (one my shrink was

vehemently opposed to and said " no way " ).

Here's what I thought about doing to find a way to pay for Rx drugs related

to HCV treatment. I thought " OK. You have a preexisting condition that's

going to disqualify you from ANY other health insurance other than Medicare or

Adult Medicaid. Since you're on disability and Medicare that pays 80% of your

healthcare but pays for no Rx drugs, and since you make 50.00 too much per

month on SSD to qualify for Adult Medicaid, force yourself to go back to work

doing something, report all your earnings to SSD, let them yank you off your

disability and Medicare, and THEN -- when you go so far in debt treating your

HCV

-- you will then qualify for assistance with all programs because you will

never qualify for disability and Medicare again " .

When I presented this idea to my shrink last year, I was sick as a dog, had

bleeding, infected gums, had just been released from the ER, had just been

pulled from treatment, and was and crying my eyes out. She asked me if I

wanted to go spend a few days in the psych unit. I told her no -- I'm just

going

to forget about treating HCV and live with this sh**. "

I still don't know what to do. Last year, I asked every single doctor and

resource I know of (Social Services is the only place I know to go) about my

illness, about the anticipated cost of treating it, and the fact that I can't

afford it, and about my desire to get lined up to get some help paying for drugs

that may be prescribed if do the treatment. I haven't been to Social

Services since last year. I got so depressed with the process last year (it was

exhaustive with dead ends everywhere, it seemed) that I finally gave up. I

don't

know where to turn, and I get very depressed when I think that my opting to

treat might deplete my 82-yr old dad's hard earned money if I can't find

assistance through some other program. I can't bring myself to do that. So...

even though I feel like I should attempt treatment again, I feel kind of

paralyzed, still, about that decision. Ahhh..... it'll come to me. There is

an

answer somewhere, and it'll eventually hit this brain before long -lol.

I do need to begin researching this stuff again (assistance). Things have

changed since last year. I did get my $600.00 Medicare Discount Drug card

(or rather the booklet that explains how I go about getting that discount).

I'm telling ya -- it takes a genius to figure it out, and it's the most

bull-crapping (scuze my mouth) thing I've ever seen in my life. It's reams of

information that no one can interpret for a measly 600.00 bucks per year

discount

that's all going to change by March 2005. My local pharmacies do not

participate, and so -- I would have to travel 50 miles round trip each month to

" participate " . I would have to pick up one prescriptions at one pharmacy and

another at another pharmacy because each pharmacy does not cover both drugs. I

studies that booklet, and I got the calculator out and concluded that -- when

all

is said and done -- I would SAVE money continuing to pay full price at my

local pharmacy for the two prescriptoin drugs I get (Toprol and Valium).

Valium,

which I have to refill every month, is about 15.00 per month. Toprol, which

I'm given a three month Rx for, is 75.00 for three months worth. I feel

sorry for the elderly who are on MANY medications and cannot figure their

" discount " out. It's impossible to figure it out.

Anyhow......thanks for your input and listening, and if you can think of

anything I might be able to do with the system in preparation, let me know. I

don't want to give up, and there is bound to be a way I can get assistance for

Rx

drugs related to HCV without depending on my family to pay full price. Maybe

there's not. Maybe I am in that " zone " .

You have a great day.

In a message dated 6/16/2004 9:11:29 AM Eastern Standard Time,

tatezi@... writes:

> ...

>

> Remember that doctors promote whichever drug they are getting kickbacks

> from...don't ever completely trust doctors.

>

> I didn't start having platelet or low WBC counts until the last 6ish weeks

> of treatment.

>

> Find out if you have a county, state or city public health system. If you

> do, use them. Plan on spending a day there and take something to drink and

> reading materials. It's a hastle to go through the initial process (took me 4

> trips and spending the day there) but you will be eligible. Then you can get

> your prescriptions free. Use the system! That's why it's there.

>

> Tatezi

[Guest guest]

I know how it goes with emails...they do seem to keep growing, don't they?

If I were you, I'd call the Board of Health where you live and ask them about a

clinic. Don't tell them about meds or the hep. Tell them you are unemployed and

need health care...every one is hip to unemployed in these times. (Don't get me

started on that...everyone will get mad at me.)

If they have a clinic, find out the hours and go camp out. Trust me, it's pretty

miserable but it can pay off. I spent 4 full days hanging out at the County walk

in clinic seeing interns before they finally said yep, you have hep c and need

to see a GI and refered me to the GI clinic. Take plenty of fluids and reading

materials.

If you don't have a Board of Health (most cities have a Board of Health) try

calling Legal Aid and see if they can direct you someplace. They are used to

dealing with poor folks and might be able to direct you.

It's tough to cry poor, but when you are, you have to swallow your pride.

If neither of these pan out, call every place in town that deals with poor

people or homeless people and ask them if they know where you can go for medical

assistance.

If you have to start calling churches, do it. So what if you aren't a church

going person...religious people are supposed to care about all people. That's in

their rules or something (I'm pagan and wouldn't hesitate going to a church if I

had to in order to get assistance).

Another resource might be a food pantry. They might be able to refer you to

someplace.

BTW, valium is very hard on your liver...you might want to think about getting

it changed. I used to take valium and every liver guy I saw said to get off

it...and switched me over to zanax. Just a suggestion...

It's going to take some work, but I can't think of any place that doesn't deal

with poor people needing health care in these days. I'm sure there are resources

to be found...it just takes some effort to find them. Look at it as a full time

job...

Good luck....and swallow your pride...

Tatezi

Re: migraines and sleep and stuff

Hi Tatezi. I am so far behind in emails, I didn't even see this one

yesterday. I got so angry last year at our wonderful state's requirements for

" adult

medicaid " and being told by the Adult Medicaid case worker " you make too

much disability to qualify for adult medicaid " . During the application process

(which was very short because the case worked looked at my SSD earnings on the

computer and concluded -- even before I put anything on paper -- that,

according to NC regs for Adult Medicaid, I made $50.00 too much per month to

qualify

and there would therefore be no need for me to fill out the application for

Adult Medicaid. I asked " well, can't you ask me if I have medical expenses

that might make me $50.00 per month poorer and therefore poor enough to qualify

for some assistance other than this Medicare I've got with SSD that covers no

Rx drugs for treating this chronic illness I've got? " She kept insisting

she could not do anything to make me qualify. I never understood her

explanation, and she never could give me a good explanation (I don't think she

quite

understood it, either), but she kept insisting that -- in North Carolina -- I

made too much disability to qualify for adult medicaid regardless of the cost of

treating HCV. I felt so disgusted with the explanation, I stopped pressing

for an answer and instead walked out and thought to myself " screw treatment

and the potential cost " . She did tell me that I could fill out some

applications to possibly get some assistance from donations from local church

groups,

and she gave me a list of those groups, but I felt that I would be too

embarrassed to ask for hand-outs from such kind places when I didn't even go to

church and had never made donations to church groups. I've donated lots to

Salvation Army and volunteered during disasters, but I've not donated or

volunteered

to church organizations, and so -- something about taking that route seemed

wrong to me.

I left Social Services that day, looking into the future (treatment) and saw

nothing but $$$$$$$ for my illness and (since my dad had offered to pay the

cost of whatever Medicare didn't cover) potentially wiping much of his assets

out. I felt there was no way I could do that, and I still feel that way. He

had already paid for my peridontal care, which -- before it was all over with

-- was over a thousand dollars, and those checkups and deep cleanings and

scalings would have to continue if I treated again. I pondered my options, and

then I thought about a possibly brilliant plan -- lol (one my shrink was

vehemently opposed to and said " no way " ).

Here's what I thought about doing to find a way to pay for Rx drugs related

to HCV treatment. I thought " OK. You have a preexisting condition that's

going to disqualify you from ANY other health insurance other than Medicare or

Adult Medicaid. Since you're on disability and Medicare that pays 80% of your

healthcare but pays for no Rx drugs, and since you make 50.00 too much per

month on SSD to qualify for Adult Medicaid, force yourself to go back to work

doing something, report all your earnings to SSD, let them yank you off your

disability and Medicare, and THEN -- when you go so far in debt treating your

HCV

-- you will then qualify for assistance with all programs because you will

never qualify for disability and Medicare again " .

When I presented this idea to my shrink last year, I was sick as a dog, had

bleeding, infected gums, had just been released from the ER, had just been

pulled from treatment, and was and crying my eyes out. She asked me if I

wanted to go spend a few days in the psych unit. I told her no -- I'm just

going

to forget about treating HCV and live with this sh**. "

I still don't know what to do. Last year, I asked every single doctor and

resource I know of (Social Services is the only place I know to go) about my

illness, about the anticipated cost of treating it, and the fact that I can't

afford it, and about my desire to get lined up to get some help paying for drugs

that may be prescribed if do the treatment. I haven't been to Social

Services since last year. I got so depressed with the process last year (it was

exhaustive with dead ends everywhere, it seemed) that I finally gave up. I

don't

know where to turn, and I get very depressed when I think that my opting to

treat might deplete my 82-yr old dad's hard earned money if I can't find

assistance through some other program. I can't bring myself to do that. So...

even though I feel like I should attempt treatment again, I feel kind of

paralyzed, still, about that decision. Ahhh..... it'll come to me. There is

an

answer somewhere, and it'll eventually hit this brain before long -lol.

I do need to begin researching this stuff again (assistance). Things have

changed since last year. I did get my $600.00 Medicare Discount Drug card

(or rather the booklet that explains how I go about getting that discount).

I'm telling ya -- it takes a genius to figure it out, and it's the most

bull-crapping (scuze my mouth) thing I've ever seen in my life. It's reams of

information that no one can interpret for a measly 600.00 bucks per year

discount

that's all going to change by March 2005. My local pharmacies do not

participate, and so -- I would have to travel 50 miles round trip each month to

" participate " . I would have to pick up one prescriptions at one pharmacy and

another at another pharmacy because each pharmacy does not cover both drugs. I

studies that booklet, and I got the calculator out and concluded that -- when

all

is said and done -- I would SAVE money continuing to pay full price at my

local pharmacy for the two prescriptoin drugs I get (Toprol and Valium).

Valium,

which I have to refill every month, is about 15.00 per month. Toprol, which

I'm given a three month Rx for, is 75.00 for three months worth. I feel

sorry for the elderly who are on MANY medications and cannot figure their

" discount " out. It's impossible to figure it out.

Anyhow......thanks for your input and listening, and if you can think of

anything I might be able to do with the system in preparation, let me know. I

don't want to give up, and there is bound to be a way I can get assistance for

Rx

drugs related to HCV without depending on my family to pay full price. Maybe

there's not. Maybe I am in that " zone " .

You have a great day.

In a message dated 6/16/2004 9:11:29 AM Eastern Standard Time,

tatezi@... writes:

> ...

>

> Remember that doctors promote whichever drug they are getting kickbacks

> from...don't ever completely trust doctors.

>

> I didn't start having platelet or low WBC counts until the last 6ish weeks

> of treatment.

>

> Find out if you have a county, state or city public health system. If you

> do, use them. Plan on spending a day there and take something to drink and

> reading materials. It's a hastle to go through the initial process (took me 4

> trips and spending the day there) but you will be eligible. Then you can get

> your prescriptions free. Use the system! That's why it's there.

>

> Tatezi

[Guest guest]

I know how it goes with emails...they do seem to keep growing, don't they?

If I were you, I'd call the Board of Health where you live and ask them about a

clinic. Don't tell them about meds or the hep. Tell them you are unemployed and

need health care...every one is hip to unemployed in these times. (Don't get me

started on that...everyone will get mad at me.)

If they have a clinic, find out the hours and go camp out. Trust me, it's pretty

miserable but it can pay off. I spent 4 full days hanging out at the County walk

in clinic seeing interns before they finally said yep, you have hep c and need

to see a GI and refered me to the GI clinic. Take plenty of fluids and reading

materials.

If you don't have a Board of Health (most cities have a Board of Health) try

calling Legal Aid and see if they can direct you someplace. They are used to

dealing with poor folks and might be able to direct you.

It's tough to cry poor, but when you are, you have to swallow your pride.

If neither of these pan out, call every place in town that deals with poor

people or homeless people and ask them if they know where you can go for medical

assistance.

If you have to start calling churches, do it. So what if you aren't a church

going person...religious people are supposed to care about all people. That's in

their rules or something (I'm pagan and wouldn't hesitate going to a church if I

had to in order to get assistance).

Another resource might be a food pantry. They might be able to refer you to

someplace.

BTW, valium is very hard on your liver...you might want to think about getting

it changed. I used to take valium and every liver guy I saw said to get off

it...and switched me over to zanax. Just a suggestion...

It's going to take some work, but I can't think of any place that doesn't deal

with poor people needing health care in these days. I'm sure there are resources

to be found...it just takes some effort to find them. Look at it as a full time

job...

Good luck....and swallow your pride...

Tatezi

Re: migraines and sleep and stuff

Hi Tatezi. I am so far behind in emails, I didn't even see this one

yesterday. I got so angry last year at our wonderful state's requirements for

" adult

medicaid " and being told by the Adult Medicaid case worker " you make too

much disability to qualify for adult medicaid " . During the application process

(which was very short because the case worked looked at my SSD earnings on the

computer and concluded -- even before I put anything on paper -- that,

according to NC regs for Adult Medicaid, I made $50.00 too much per month to

qualify

and there would therefore be no need for me to fill out the application for

Adult Medicaid. I asked " well, can't you ask me if I have medical expenses

that might make me $50.00 per month poorer and therefore poor enough to qualify

for some assistance other than this Medicare I've got with SSD that covers no

Rx drugs for treating this chronic illness I've got? " She kept insisting

she could not do anything to make me qualify. I never understood her

explanation, and she never could give me a good explanation (I don't think she

quite

understood it, either), but she kept insisting that -- in North Carolina -- I

made too much disability to qualify for adult medicaid regardless of the cost of

treating HCV. I felt so disgusted with the explanation, I stopped pressing

for an answer and instead walked out and thought to myself " screw treatment

and the potential cost " . She did tell me that I could fill out some

applications to possibly get some assistance from donations from local church

groups,

and she gave me a list of those groups, but I felt that I would be too

embarrassed to ask for hand-outs from such kind places when I didn't even go to

church and had never made donations to church groups. I've donated lots to

Salvation Army and volunteered during disasters, but I've not donated or

volunteered

to church organizations, and so -- something about taking that route seemed

wrong to me.

I left Social Services that day, looking into the future (treatment) and saw

nothing but $$$$$$$ for my illness and (since my dad had offered to pay the

cost of whatever Medicare didn't cover) potentially wiping much of his assets

out. I felt there was no way I could do that, and I still feel that way. He

had already paid for my peridontal care, which -- before it was all over with

-- was over a thousand dollars, and those checkups and deep cleanings and

scalings would have to continue if I treated again. I pondered my options, and

then I thought about a possibly brilliant plan -- lol (one my shrink was

vehemently opposed to and said " no way " ).

Here's what I thought about doing to find a way to pay for Rx drugs related

to HCV treatment. I thought " OK. You have a preexisting condition that's

going to disqualify you from ANY other health insurance other than Medicare or

Adult Medicaid. Since you're on disability and Medicare that pays 80% of your

healthcare but pays for no Rx drugs, and since you make 50.00 too much per

month on SSD to qualify for Adult Medicaid, force yourself to go back to work

doing something, report all your earnings to SSD, let them yank you off your

disability and Medicare, and THEN -- when you go so far in debt treating your

HCV

-- you will then qualify for assistance with all programs because you will

never qualify for disability and Medicare again " .

When I presented this idea to my shrink last year, I was sick as a dog, had

bleeding, infected gums, had just been released from the ER, had just been

pulled from treatment, and was and crying my eyes out. She asked me if I

wanted to go spend a few days in the psych unit. I told her no -- I'm just

going

to forget about treating HCV and live with this sh**. "

I still don't know what to do. Last year, I asked every single doctor and

resource I know of (Social Services is the only place I know to go) about my

illness, about the anticipated cost of treating it, and the fact that I can't

afford it, and about my desire to get lined up to get some help paying for drugs

that may be prescribed if do the treatment. I haven't been to Social

Services since last year. I got so depressed with the process last year (it was

exhaustive with dead ends everywhere, it seemed) that I finally gave up. I

don't

know where to turn, and I get very depressed when I think that my opting to

treat might deplete my 82-yr old dad's hard earned money if I can't find

assistance through some other program. I can't bring myself to do that. So...

even though I feel like I should attempt treatment again, I feel kind of

paralyzed, still, about that decision. Ahhh..... it'll come to me. There is

an

answer somewhere, and it'll eventually hit this brain before long -lol.

I do need to begin researching this stuff again (assistance). Things have

changed since last year. I did get my $600.00 Medicare Discount Drug card

(or rather the booklet that explains how I go about getting that discount).

I'm telling ya -- it takes a genius to figure it out, and it's the most

bull-crapping (scuze my mouth) thing I've ever seen in my life. It's reams of

information that no one can interpret for a measly 600.00 bucks per year

discount

that's all going to change by March 2005. My local pharmacies do not

participate, and so -- I would have to travel 50 miles round trip each month to

" participate " . I would have to pick up one prescriptions at one pharmacy and

another at another pharmacy because each pharmacy does not cover both drugs. I

studies that booklet, and I got the calculator out and concluded that -- when

all

is said and done -- I would SAVE money continuing to pay full price at my

local pharmacy for the two prescriptoin drugs I get (Toprol and Valium).

Valium,

which I have to refill every month, is about 15.00 per month. Toprol, which

I'm given a three month Rx for, is 75.00 for three months worth. I feel

sorry for the elderly who are on MANY medications and cannot figure their

" discount " out. It's impossible to figure it out.

Anyhow......thanks for your input and listening, and if you can think of

anything I might be able to do with the system in preparation, let me know. I

don't want to give up, and there is bound to be a way I can get assistance for

Rx

drugs related to HCV without depending on my family to pay full price. Maybe

there's not. Maybe I am in that " zone " .

You have a great day.

In a message dated 6/16/2004 9:11:29 AM Eastern Standard Time,

tatezi@... writes:

> ...

>

> Remember that doctors promote whichever drug they are getting kickbacks

> from...don't ever completely trust doctors.

>

> I didn't start having platelet or low WBC counts until the last 6ish weeks

> of treatment.

>

> Find out if you have a county, state or city public health system. If you

> do, use them. Plan on spending a day there and take something to drink and

> reading materials. It's a hastle to go through the initial process (took me 4

> trips and spending the day there) but you will be eligible. Then you can get

> your prescriptions free. Use the system! That's why it's there.

>

> Tatezi

[Guest guest]

I know how it goes with emails...they do seem to keep growing, don't they?

If I were you, I'd call the Board of Health where you live and ask them about a

clinic. Don't tell them about meds or the hep. Tell them you are unemployed and

need health care...every one is hip to unemployed in these times. (Don't get me

started on that...everyone will get mad at me.)

If they have a clinic, find out the hours and go camp out. Trust me, it's pretty

miserable but it can pay off. I spent 4 full days hanging out at the County walk

in clinic seeing interns before they finally said yep, you have hep c and need

to see a GI and refered me to the GI clinic. Take plenty of fluids and reading

materials.

If you don't have a Board of Health (most cities have a Board of Health) try

calling Legal Aid and see if they can direct you someplace. They are used to

dealing with poor folks and might be able to direct you.

It's tough to cry poor, but when you are, you have to swallow your pride.

If neither of these pan out, call every place in town that deals with poor

people or homeless people and ask them if they know where you can go for medical

assistance.

If you have to start calling churches, do it. So what if you aren't a church

going person...religious people are supposed to care about all people. That's in

their rules or something (I'm pagan and wouldn't hesitate going to a church if I

had to in order to get assistance).

Another resource might be a food pantry. They might be able to refer you to

someplace.

BTW, valium is very hard on your liver...you might want to think about getting

it changed. I used to take valium and every liver guy I saw said to get off

it...and switched me over to zanax. Just a suggestion...

It's going to take some work, but I can't think of any place that doesn't deal

with poor people needing health care in these days. I'm sure there are resources

to be found...it just takes some effort to find them. Look at it as a full time

job...

Good luck....and swallow your pride...

Tatezi

Re: migraines and sleep and stuff

Hi Tatezi. I am so far behind in emails, I didn't even see this one

yesterday. I got so angry last year at our wonderful state's requirements for

" adult

medicaid " and being told by the Adult Medicaid case worker " you make too

much disability to qualify for adult medicaid " . During the application process

(which was very short because the case worked looked at my SSD earnings on the

computer and concluded -- even before I put anything on paper -- that,

according to NC regs for Adult Medicaid, I made $50.00 too much per month to

qualify

and there would therefore be no need for me to fill out the application for

Adult Medicaid. I asked " well, can't you ask me if I have medical expenses

that might make me $50.00 per month poorer and therefore poor enough to qualify

for some assistance other than this Medicare I've got with SSD that covers no

Rx drugs for treating this chronic illness I've got? " She kept insisting

she could not do anything to make me qualify. I never understood her

explanation, and she never could give me a good explanation (I don't think she

quite

understood it, either), but she kept insisting that -- in North Carolina -- I

made too much disability to qualify for adult medicaid regardless of the cost of

treating HCV. I felt so disgusted with the explanation, I stopped pressing

for an answer and instead walked out and thought to myself " screw treatment

and the potential cost " . She did tell me that I could fill out some

applications to possibly get some assistance from donations from local church

groups,

and she gave me a list of those groups, but I felt that I would be too

embarrassed to ask for hand-outs from such kind places when I didn't even go to

church and had never made donations to church groups. I've donated lots to

Salvation Army and volunteered during disasters, but I've not donated or

volunteered

to church organizations, and so -- something about taking that route seemed

wrong to me.

I left Social Services that day, looking into the future (treatment) and saw

nothing but $$$$$$$ for my illness and (since my dad had offered to pay the

cost of whatever Medicare didn't cover) potentially wiping much of his assets

out. I felt there was no way I could do that, and I still feel that way. He

had already paid for my peridontal care, which -- before it was all over with

-- was over a thousand dollars, and those checkups and deep cleanings and

scalings would have to continue if I treated again. I pondered my options, and

then I thought about a possibly brilliant plan -- lol (one my shrink was

vehemently opposed to and said " no way " ).

Here's what I thought about doing to find a way to pay for Rx drugs related

to HCV treatment. I thought " OK. You have a preexisting condition that's

going to disqualify you from ANY other health insurance other than Medicare or

Adult Medicaid. Since you're on disability and Medicare that pays 80% of your

healthcare but pays for no Rx drugs, and since you make 50.00 too much per

month on SSD to qualify for Adult Medicaid, force yourself to go back to work

doing something, report all your earnings to SSD, let them yank you off your

disability and Medicare, and THEN -- when you go so far in debt treating your

HCV

-- you will then qualify for assistance with all programs because you will

never qualify for disability and Medicare again " .

When I presented this idea to my shrink last year, I was sick as a dog, had

bleeding, infected gums, had just been released from the ER, had just been

pulled from treatment, and was and crying my eyes out. She asked me if I

wanted to go spend a few days in the psych unit. I told her no -- I'm just

going

to forget about treating HCV and live with this sh**. "

I still don't know what to do. Last year, I asked every single doctor and

resource I know of (Social Services is the only place I know to go) about my

illness, about the anticipated cost of treating it, and the fact that I can't

afford it, and about my desire to get lined up to get some help paying for drugs

that may be prescribed if do the treatment. I haven't been to Social

Services since last year. I got so depressed with the process last year (it was

exhaustive with dead ends everywhere, it seemed) that I finally gave up. I

don't

know where to turn, and I get very depressed when I think that my opting to

treat might deplete my 82-yr old dad's hard earned money if I can't find

assistance through some other program. I can't bring myself to do that. So...

even though I feel like I should attempt treatment again, I feel kind of

paralyzed, still, about that decision. Ahhh..... it'll come to me. There is

an

answer somewhere, and it'll eventually hit this brain before long -lol.

I do need to begin researching this stuff again (assistance). Things have

changed since last year. I did get my $600.00 Medicare Discount Drug card

(or rather the booklet that explains how I go about getting that discount).

I'm telling ya -- it takes a genius to figure it out, and it's the most

bull-crapping (scuze my mouth) thing I've ever seen in my life. It's reams of

information that no one can interpret for a measly 600.00 bucks per year

discount

that's all going to change by March 2005. My local pharmacies do not

participate, and so -- I would have to travel 50 miles round trip each month to

" participate " . I would have to pick up one prescriptions at one pharmacy and

another at another pharmacy because each pharmacy does not cover both drugs. I

studies that booklet, and I got the calculator out and concluded that -- when

all

is said and done -- I would SAVE money continuing to pay full price at my

local pharmacy for the two prescriptoin drugs I get (Toprol and Valium).

Valium,

which I have to refill every month, is about 15.00 per month. Toprol, which

I'm given a three month Rx for, is 75.00 for three months worth. I feel

sorry for the elderly who are on MANY medications and cannot figure their

" discount " out. It's impossible to figure it out.

Anyhow......thanks for your input and listening, and if you can think of

anything I might be able to do with the system in preparation, let me know. I

don't want to give up, and there is bound to be a way I can get assistance for

Rx

drugs related to HCV without depending on my family to pay full price. Maybe

there's not. Maybe I am in that " zone " .

You have a great day.

In a message dated 6/16/2004 9:11:29 AM Eastern Standard Time,

tatezi@... writes:

> ...

>

> Remember that doctors promote whichever drug they are getting kickbacks

> from...don't ever completely trust doctors.

>

> I didn't start having platelet or low WBC counts until the last 6ish weeks

> of treatment.

>

> Find out if you have a county, state or city public health system. If you

> do, use them. Plan on spending a day there and take something to drink and

> reading materials. It's a hastle to go through the initial process (took me 4

> trips and spending the day there) but you will be eligible. Then you can get

> your prescriptions free. Use the system! That's why it's there.

>

> Tatezi

[Guest guest]

, can I ask, have you had a biopsy and if so, what stage are you? Maybe you

don't need to treat?

Treatment can be worse than the hep for some people and unless you are stage 3

or 4 and depending on your age, I would rethink rushing to treat. Treatment is

serious medication. It leaves many people with some kind of problem or two. It

won't be kind to your teeth or gums. I need over $5,000 worth of dental work

now, am permanently on antidepressants, triggered fibrmyalgia and chronic

fatigue. I wish I'd never done it.

Alley

[Guest guest]

, can I ask, have you had a biopsy and if so, what stage are you? Maybe you

don't need to treat?

Treatment can be worse than the hep for some people and unless you are stage 3

or 4 and depending on your age, I would rethink rushing to treat. Treatment is

serious medication. It leaves many people with some kind of problem or two. It

won't be kind to your teeth or gums. I need over $5,000 worth of dental work

now, am permanently on antidepressants, triggered fibrmyalgia and chronic

fatigue. I wish I'd never done it.

Alley

[Guest guest]

Hi Alley. Yes I had a biopsy last year, two weeks after diagnosis. I was

grade 3 / stage 2 (that was in June 2003). My viral load was 2,450,000

copies at that time. My AST/ALT's had been normal for years, (all labs had

been

normal for years) but in May 2003 (right before I was diagnosed), my CBC came

back with slightly elevated sgpt and sgot (AST/ALT), and my rbcs and and

platelets were down slightly. I had no iron, no signs of fatty liver, no

amonia.

Because of my low platelets, they checked PTT (I was fine for biopsy). Did

fine during biopsy, followed up for explanation of it. Doc explained what

grade 3 / stage 2 meant. I asked about whether he thought I needed to treat,

(he's a hepatologist and treats many for HCV), he said " you're kind of on the

border -- stage 2 is not that bad, but your degree of inflammation (grade 3)

gives me some concern -- you're pretty inflamed " . He talked about my age

(almost 44) and the theory that women who are not menopausal yet respond better,

he

asked me about my support system (it was ok but not great), he expressed some

concern about my history of depression. He asked me if I wanted to treat, and

I told him I did. He told me he treated all his HCV patients with Schering

Plough's PegIntron and Rebetol, which was fine by me, but I found out (when I

attempted to enroll in their program), that I didn't qualify to receive the

Peg/Reb at no cost and would have to pay 20% of the Reb. Since I couldn't

afford that, I called Roche to see if I qualified for their Peggasist program,

and I did (I just had to find a GI doc that would treat me with it, and I

did). I saw him, he got all my record from the first GI doc, did labs of his

own (my ALT/AST were going up (in the 70's by now), my platelets were still low

(I had begun brusing and having spontaneous nose bleeds), my rbcs still

slightly low, but treatment was begun. And I bombed -- lol -- within less than

three weeks I was pulled from treatment because they said my labs dropped more

dramatically than they had anticipated (but they weren't low enough yet to

begin the boosters), and my mouth had to be taken care of -- simply put -- I

could

not continue treatment with all that infection brewing in my gums and my wbcs

dropping further. It was after I was pulled that -- within a few days -- my

ankles swelled up 3 times their normal size, and I wound up in the ER, and

then I had to go to hem/onc to rule out underlying clotting disorder, which was

ruled out. After I finished with all my visits to the peridontist and

hem/onc (I had been off treatment for about three months by that time), my GI

doc

did more labs, and all my labs had returned to ALL within normal limits.

AST/ALT, platelets, rbcs, wbcs -- all were within normal limits, as was rest of

my

CBC. My viral load had gone up slightly to 2,750.000 copies. I felt great

-- the best I had felt in years. Feeling good -- I wasn't chomping at the

bit to go through treatment again even if I was a candidate. Hesitant to treat

again, I asked the doc him if there was anything " on the horizon " that might

behoove me to wait, and he said he didn't see anything for at least another

five years or longer. I asked him if I could think about it, and he was glad to

see me in good shape and good spirits, and he told me to go home, enjoy

feeling good, and that he'd see me again in six months. I'm supposed to call

for

the appointment. I haven't called yet. I go from day to day, changing my mind.

I guess since I'm still so flippy floppy on this (scared to treat again but

want to get rid of this virus), I should call him, set up an appointment, and

at let him know I haven't made my mind up. He may check labs, they may be

fine, they might be not fine, and I guess I just need to call and set up an

appointment.

Arg. I honestly don't know what the deciding factor will be. Some days I'm

hyped to do it and think I'll do fine; other days I have this gut feeling

that I'm not going to do well on it. Flip a coin? Pull pedals off flowers

and say " I treat; I don't treat; I treat: I don't treat " . lol.

Thanks for your side of the story. It matters. I sometimes think

(especially when I'm feeling good) " why fix something if it ain't broke " .

Right

now, I'm feeling relatively good (a whole lot better than I've felt in five

years). I might KNOW I'm broke inside, but.. but... but. (Sometimes I wish

I

had never been diagnosed -- I wouldn't be " hung up " on whether I should treat

or not).

Have a great night.

In a message dated 6/20/2004 3:01:30 PM Eastern Standard Time,

alleypat@... writes:

> , can I ask, have you had a biopsy and if so, what stage are you?

> Maybe you don't need to treat?

>

> Treatment can be worse than the hep for some people and unless you are stage

> 3 or 4 and depending on your age, I would rethink rushing to treat.

> Treatment is serious medication. It leaves many people with some kind of

problem or

> two. It won't be kind to your teeth or gums. I need over $5,000 worth of

> dental work now, am permanently on antidepressants, triggered fibrmyalgia and

> chronic fatigue. I wish I'd never done it.

>

> Alley

>

[Guest guest]

Well , good thing is, it isn't a fast moving virus in most cases, so you've

time.

Alley