Re: Confused, scared, & tired - long (sorry)

September 19, 2004

Nadine, I will keep you in my prayers, others here will give you helpful

information. Hang in there, there is light at the end of the tunnel:

_http://www.scripturestudies.com/Vol3/C8/c8_psa.html_

(http://www.scripturestudies.com/Vol3/C8/c8_psa.html)

Peace,

Mr. Bob

and In a message dated 9/19/2004 6:57:44 PM Eastern Daylight Time,

steward1@... writes:

My husband has been " officially " having symptoms of Hep C for almost

1 year now. He was diagnosed as having genotype 1, viral count off

the charts. He also has Crohn's disease (one of the blood

tranasfusions gave him the hep)and stage 3 of the four stages of

liver cirrohis. A breathing test before the medicine began showed

no problems, but shortly after starting treatment he developed

emphesezema (sorry about spellings). He lost so much weight so

quickly the doctor took him off all meds (we still have several

bottles of tablets in the freezer). The doctor said 'see you in 6

months' When I specifically asked the nurse, she stated they were

sending my husband home to die. We are trying to get Hospice

involved, and now suddenly, the Hep doctor and the Crohns' doctor

reportedly have stated they will continue following his case (hubby

thinks due to his peculiar case, the MDs are going to be able to

write a paper). My confusion is this: I know hubby is sick. I

know his energy level is below zero. I know he has brain fades

(can't count the number of times he's put eggs on our outside stove

to hardboil and then forgot about them). He is not able to collect

SSI. They state he owes them $15,000 from when he was on it before

and they took 3 years to review his case, denying his claim (went

all the way to the judge). They intend to take his social security

money upon retirement until the debt is paid. I don't know what to

do - I am the sole income and we are living hand to mouth. We have

no savings. A private conglomerate is taking my state job working

with abused children and their families private on Nov. 15th and

they have refused to hire me (too much experience). I have just

completed an MBA in Information Technology and am trying to look

for a job, but am in the old 'need to have experience to get a job

but no one will hire you to get the experience' cycle. I work 12 to

14 hours a day straight through with no lunch and am exhausted when

I get home. I have to do everything at home - laundry, dishes -

it's almost like having a young toddler in the home. I CAN'T KEEP

DOING THIS!!! I am not able to afford my medication, which is

affecting me. I am like a lame duck president at work, and I'm

supposed to teach the newcomers everything I know. I also have a

higher caseload than any other employee. We have prepared for 4

tropical systems in the last 6 weeks - 3 hit us in some regards. I

was off sick for 3 days this month. I was threatened with a written

verbal reprimand because with everything going on, and special

assignments due to the weather, 2 court reports were not written.

My bosses decided not to give me the reprimand as I only have 8

weeks left and I haven't had anything continued before. Since we

might have to move for a new job, I am also trying to go through

everything we own so we only move what we absolutely want to keep.

My hubby's comments are not to worry about anything. He says

unemployment insurance will help (help what I don't know). How do I

handle everything? I try to look at what needs to be done first,

and it is unbelieveable. Then the immediate needs intrude. We own

our home and vehicles, but I have to prepare for how are we going to

pay for things with no job? How do I afford medical appts, gas,

etc? How do I keep my hubby warm this winter? I don't know if he

thinks I will find a job quickly, so why worry, or if his mind is

such that he can't see the whole picture. I'm sorry this is so

long - I am so scared, confused and tired. Neither one of us is

sleeping much. Food - don't even mention it. Thank you for the

venting. Nadine

September 19, 2004

What a terrible situation you have, Nadine. I don't know what state

you live in and what laws apply there, but I hope you continue to

pursue assistance. As a last resort, contact your state

representative.

With your experience and new degree in IT, you're a valuable asset

to many companies. My employer is looking for someone exactly like

you. Good luck in your employment search.

I'm new here - my first day is today. =) As far as I'm concerned,

feel free to vent as often as you need. I may be doing plenty of

that myself.

My new dx grief was punctuated by the fact that a last year when we

went through a very expensive and risky invitro fertilization

procedure my pre-procedure hepC test was postive, but the nurse

overlooked it and put negative in my chart ... according to the

doctor. How convenient to blame the nurse. There's a lot more to

the story, but I feel very used and upset about it. Also, finding a

gastroenterologist that I feel confident in and think has my health

in his/her best interest is a struggle in itself.

Well, enough about that. I hope to hear more from you. You're not

alone through all this.

Echo

> My husband has been " officially " having symptoms of Hep C for

almost

> 1 year now. He was diagnosed as having genotype 1, viral count off

> the charts. He also has Crohn's disease (one of the blood

> tranasfusions gave him the hep)and stage 3 of the four stages of

> liver cirrohis. A breathing test before the medicine began showed

> no problems, but shortly after starting treatment he developed

> emphesezema (sorry about spellings). He lost so much weight so

> quickly the doctor took him off all meds (we still have several

> bottles of tablets in the freezer). The doctor said 'see you in 6

> months' When I specifically asked the nurse, she stated they were

> sending my husband home to die. We are trying to get Hospice

> involved, and now suddenly, the Hep doctor and the Crohns' doctor

> reportedly have stated they will continue following his case

(hubby

> thinks due to his peculiar case, the MDs are going to be able to

> write a paper). My confusion is this: I know hubby is sick. I

> know his energy level is below zero. I know he has brain fades

> (can't count the number of times he's put eggs on our outside

stove

> to hardboil and then forgot about them). He is not able to

collect

> SSI. They state he owes them $15,000 from when he was on it

before

> and they took 3 years to review his case, denying his claim (went

> all the way to the judge). They intend to take his social

security

> money upon retirement until the debt is paid. I don't know what

to

> do - I am the sole income and we are living hand to mouth. We

have

> no savings. A private conglomerate is taking my state job working

> with abused children and their families private on Nov. 15th and

> they have refused to hire me (too much experience). I have just

> completed an MBA in Information Technology and am trying to look

> for a job, but am in the old 'need to have experience to get a job

> but no one will hire you to get the experience' cycle. I work 12

to

> 14 hours a day straight through with no lunch and am exhausted

when

> I get home. I have to do everything at home - laundry, dishes -

> it's almost like having a young toddler in the home. I CAN'T KEEP

> DOING THIS!!! I am not able to afford my medication, which is

> affecting me. I am like a lame duck president at work, and I'm

> supposed to teach the newcomers everything I know. I also have a

> higher caseload than any other employee. We have prepared for 4

> tropical systems in the last 6 weeks - 3 hit us in some regards.

I

> was off sick for 3 days this month. I was threatened with a

written

> verbal reprimand because with everything going on, and special

> assignments due to the weather, 2 court reports were not written.

> My bosses decided not to give me the reprimand as I only have 8

> weeks left and I haven't had anything continued before. Since we

> might have to move for a new job, I am also trying to go through

> everything we own so we only move what we absolutely want to

keep.

> My hubby's comments are not to worry about anything. He says

> unemployment insurance will help (help what I don't know). How do

I

> handle everything? I try to look at what needs to be done first,

> and it is unbelieveable. Then the immediate needs intrude. We

own

> our home and vehicles, but I have to prepare for how are we going

to

> pay for things with no job? How do I afford medical appts, gas,

> etc? How do I keep my hubby warm this winter? I don't know if he

> thinks I will find a job quickly, so why worry, or if his mind is

> such that he can't see the whole picture. I'm sorry this is so

> long - I am so scared, confused and tired. Neither one of us is

> sleeping much. Food - don't even mention it. Thank you for the

> venting. Nadine

September 20, 2004

Hey there Nadine,

My name is D, and I was diagnosed earlier this year with Genotype 2C.

I have been where you are sweetie, and my wife and I damn near ended up

killing each other before we got it straightened out. When I got sick, I was

already fighting for disability, and had been doing so for 13 years, by that

time I

could barely make it to the bathroom by myself, and while Tess tried her best

to get everything running, we were drowning in bills, dirty dishes, cat hair,

and the usual flotsam of everyday life.

It got to where we were choosing between heat or food in the winter, and

seldom had both during the same month. Our two growing kids tried hard to

understand, but were often disappointed at the handmade toys we gave them at

Christmas, especially when their friends would come to school talking about the

latest

electronic gizmo they had received. To make it worse, my wife works for the

state of Missouri, and has to play nice with the other kiddies within the same

system that was killing us. Just to add the cherry to the top of it, we

couldn't even afford the ammo to get out of it.

But we did get out of it. We focused on what we could control, and learned

to live without some things. No, we didn't have the handy frozen dinners in

the freezer, but my kids know how to cook. No, we didn't order pizza, but we

learned how to make Root Beer. My kids started to get a kick out of our

" Homemade Christmases " , and took an interest in the bones of the creative side

of

things. I taught my son everything I knew about carpentry, and my daughter has

developed a skill in both carving and ceramics that have carried her through to

college. Instead of watching TV all night long we sang songs and told

stories, and when the lights went out, we were ready with hand-dipped candles.

We

made our way, and kept fighting.

I got my disability, and my wife got a fat promotion at work. We have more

money now than we have ever had before. My daughter is off at college and

having a blast sharing her skills with her classmates, who think she's some kind

of genius because of what we learned to do, and my son just finished building

his first baby crib, making sure to include the handcarved headboard that has

been in my family for 12 generations. Am I sick, yes. Do I hurt, yes. Would

I have missed it for the world, no. Am I saying this will be easy for you,

HELL no!

Lets not call a balogna sandwich a steak dinner here! You have hard times

ahead, and there will be hard choices to make. But you CAN make them! You CAN

get through it! Focus on what you need, and ignore the rest. Do you need

cable TV to live? Do you need air conditioning? Can you get by with rationing

water and power?

First, finish the job at hand. Will you qualify for unemployment benefits

after your release? If so, that will give you a cushion to look for your next

job. In the meantime, put out those feelers for aid! Church groups, civil

services, private organizations, all are possible sources of assistance, both

for

you and your hubby.

Now focus on what you have to have. Food, shelter, water, controlled

environment, and meds. Talk to your Doc about possible non-name-brand variants

of

your meds, then see if any aid is available to help get them. Lets face it,

having the constituency die due to lack of aid looks bad for public officials.

Don't be above using that card if it's needed! There are programs available in

most states for food, utilities, and housing, so look for them! Life first,

pride second.

And lastly, remember that he loves you. I wasn't always able to tell Tess

what was going on with me due to pain and/or meds, but I noticed what was going

on with her, and I did all I could to help. Your Husband may not be quite as

lucid as he once was, but he's still your Husband. He might not know what's

going on, but he knows something isn't right, and wants more than anything to

fix it for you. Go over and let him hold you. Take comfort in those big arms

of his, and don't worry about it, if only for a few minutes. Sounds to me

like that's what he was trying to do already.

Also, remember that you two are not alone. You have me, Ric, Janet, Bob, and

all the rest of our crazy little family to talk to, vent to, and ask advice

from. If possible, get your guy on here so we can chat to him too! Lets face

it, even the Skipper needed Gilligan!

Hope this helped, and if you wanna talk privately, write me at

Shadowbear@...

Peace,

D

Peace,

D

Peace,

D

Peace,

D

September 20, 2004

D,

You are one heck of a great guy. I got so much comfort from your letter, you'll

never know how much. Being a new Widow causes many of the monetary concerns

you're talking about and for me, I don't think it was pride, it was more

thinking that others were more deserving than me. But none the less having one

less pay packet in the house takes an awful lot of getting used to. So thank

you for your wise letter, I shall keep it and reread it when things get tighter,

which they will. We have Christmas coming up after all.

anne

Re: Confused, scared, & tired - long (sorry)

Hey there Nadine,

My name is D, and I was diagnosed earlier this year with Genotype 2C.

I have been where you are sweetie, and my wife and I damn near ended up

killing each other before we got it straightened out. When I got sick, I was

already fighting for disability, and had been doing so for 13 years, by that

time I

could barely make it to the bathroom by myself, and while Tess tried her best

to get everything running, we were drowning in bills, dirty dishes, cat hair,

and the usual flotsam of everyday life.

It got to where we were choosing between heat or food in the winter, and

seldom had both during the same month. Our two growing kids tried hard to

understand, but were often disappointed at the handmade toys we gave them at

Christmas, especially when their friends would come to school talking about

the latest

electronic gizmo they had received. To make it worse, my wife works for the

state of Missouri, and has to play nice with the other kiddies within the same

system that was killing us. Just to add the cherry to the top of it, we

couldn't even afford the ammo to get out of it.

But we did get out of it. We focused on what we could control, and learned

to live without some things. No, we didn't have the handy frozen dinners in

the freezer, but my kids know how to cook. No, we didn't order pizza, but we

learned how to make Root Beer. My kids started to get a kick out of our

" Homemade Christmases " , and took an interest in the bones of the creative side

of

things. I taught my son everything I knew about carpentry, and my daughter

has

developed a skill in both carving and ceramics that have carried her through

to

college. Instead of watching TV all night long we sang songs and told

stories, and when the lights went out, we were ready with hand-dipped candles.

We

made our way, and kept fighting.

I got my disability, and my wife got a fat promotion at work. We have more

money now than we have ever had before. My daughter is off at college and

having a blast sharing her skills with her classmates, who think she's some

kind

of genius because of what we learned to do, and my son just finished building

his first baby crib, making sure to include the handcarved headboard that has

been in my family for 12 generations. Am I sick, yes. Do I hurt, yes. Would

I have missed it for the world, no. Am I saying this will be easy for you,

HELL no!

Lets not call a balogna sandwich a steak dinner here! You have hard times

ahead, and there will be hard choices to make. But you CAN make them! You

CAN

get through it! Focus on what you need, and ignore the rest. Do you need

cable TV to live? Do you need air conditioning? Can you get by with

rationing

water and power?

First, finish the job at hand. Will you qualify for unemployment benefits

after your release? If so, that will give you a cushion to look for your next

job. In the meantime, put out those feelers for aid! Church groups, civil

services, private organizations, all are possible sources of assistance, both

for

you and your hubby.

Now focus on what you have to have. Food, shelter, water, controlled

environment, and meds. Talk to your Doc about possible non-name-brand

variants of

your meds, then see if any aid is available to help get them. Lets face it,

having the constituency die due to lack of aid looks bad for public officials.

Don't be above using that card if it's needed! There are programs available

in

most states for food, utilities, and housing, so look for them! Life first,

pride second.

And lastly, remember that he loves you. I wasn't always able to tell Tess

what was going on with me due to pain and/or meds, but I noticed what was

going

on with her, and I did all I could to help. Your Husband may not be quite as

lucid as he once was, but he's still your Husband. He might not know what's

going on, but he knows something isn't right, and wants more than anything to

fix it for you. Go over and let him hold you. Take comfort in those big arms

of his, and don't worry about it, if only for a few minutes. Sounds to me

like that's what he was trying to do already.

Also, remember that you two are not alone. You have me, Ric, Janet, Bob, and

all the rest of our crazy little family to talk to, vent to, and ask advice

from. If possible, get your guy on here so we can chat to him too! Lets face

it, even the Skipper needed Gilligan!

Hope this helped, and if you wanna talk privately, write me at

Shadowbear@...

Peace,

D

September 22, 2004

Nadine,

I remember you from when you first joined our group.

Glad to see you posting again. *smile* even if it is venting that is

what we are all about giving support when it is needed.

As you know Hep c is a diease that has all kinds of twist and turns.

Some live throughout their lifetime with nary a symptom. Some get

some of the symptoms but never go any further and some get it full

blown.

Me, I am somewhere in the middle,yup I got the brain fog. Memory

improves somewhat when I watch my diet and remember to drink water.

LOL

As the spouse of someone with Hep C, and other health problems well

I can't speak from that standpoint. But I do watch my husband get

more and more frustrated with the diease and what it is doing to me.

In fact the other night we had a big blow-out because he thought I

was just being simply lazy. I reacted with negatively to say the

least. I was like spend one day in this body and see what it is

like. I know that things are piling up on my husband but the same

things are piling up on me too.

We agreed to disagree and that didn't solve any problems. So I

talked to my therapist about it in my monthly session. I was lucky

my appt. was right after the blow up. We are going in for a family

counseling appt. so that all can be aired out, and discussed. My

main problem is fatique and that is something I don't think will

change. But maybe we can figure out solutions to the problem.

We don't have the income problems that you have but things do get a

little tight when new meds are prescribed and it is having to be

added to the list of other meds I am already paying for.

I too was turned down for SSI and SSD. Crappy huh. I worked all

those years and added income to the family and now because my

husband is a good provider I can't get anything to help. I have been

thinking of some type of job that I can do from home. Mainly right

now my job is taking care of my daughter who is 9 now and taking

care of this group. I am not much help in the housework, but I can

do the dishes,and laundry as long as I don't have to put up

everyone's clothes. You know what I mean.

But the good thing about it is that we are willing to work on the

problems rather than let them fester. You might have to find

alternate means of making your home work to your best advantage. I

read Shadowbears reply to you and that makes a lot of sense to me.

Funny how when you are down you find a way to make live bearable to

say the least.

I don't know if this helped or not but at least you know that others

are walking the same walk as you.

Love

Janet