Re: a little scared

May 19, 1999

Hi,

My husband has this Hep c. He has days when he is very down but we don't

know if it's the hep c or just him. Yesterday wasn't a good day. Today he

is fine. It drives me nuts but the man has been there for me for 25 years

and I will damn well be there now for him. I expect him to live forever.

Carolee

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From: TreeSkinnr@...[sMTP:TreeSkinnr@...]

Sent: Thursday, May 20, 1999 7:38 PM

Hepatitis Conelist

Subject: Re: A little scared

From: TreeSkinnr@...

Oh , you described my husband's symptoms exactly-->alcoholism,

depression, Hep C, one-year remission, currently miserable--like the flu.

It's also interesting how you describe your husband's reaction. I know

it's

much harder being the sick one, but it is also difficult living with

someone

with a chronic illness. I find myself suggesting that maybe if he got up

and

did something, he'd feel better. Dumb suggestion, eh?

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May 20, 1999

Thanks . I know you are right about feeling helpless and that rubbung

off on family etc. I am a 40 yr old woman and most of the time I feel 12.

I'm so afraid to keep calling the dr because I don't want to be so

overwrought with this that I really physically make myself sick and then I

don't want to ignore it either. I know that this list is to help people who

need different opinions or ideas to work with (or not) Maybe I'll give my dr

a call this afternoon. Thanks for responding and take care.

May 20, 1999

Dear ,

One of the major things is from my disease is not only what I have

learned about myself but also how each individual with this disease reacts

both to it and the treatment. Also how most doctors, clinics and hospitals

each seem to have a different view of how to attempt management.

A friend of mine was told last December he may have Hep C but all he has

learned is that further testing is indicated. Funny I was tested once and

then soon after was tested again to confirm the earlier tests. This was done

at a Veterans hospital. So they leave him in constant wonder and anxiety.

Since he is also a Vet. I recommended to him he have the VA do the testing

as I'm sure some providers and health insurance companies are more motivated

by costs more than in treatment. When I see my doctor next I will ask him if

there are certain individuals because other possible factors that the

testing requires a slightly different approach to come to a diagnosis. Has

anyone one else found this to be so?

Regarding being prone to depression, everyone is. To me often that is an

excuse to not treat. Some people though to have obvious signs of either

acute or chronic depression which would require a mental health professional

to be involved before treatment begins. Medical doctors for the most part no

little of various aspects of depression and any time there is a possibility

of it being a factor often they do a blanket synopsis that is often from

little understanding. Hell I am diagnosed with chronic PTSD from Viet Nam

and they did not have any problem beginning my treatment. In my case though

the doctor consulted my shrink.

Everyone has mood swings some of this treatment seems to be a catalyst

for it. To my mind waiting for your Doctor to get back to you is giving

him/her power over you. Be your own power and Demand that you receive a

second opinion. This is your condition not theirs, it is your body, not

theirs. Wait for no one and start asserting your own power and not allow

someone else so much control over you. Many people become sheep anytime they

think/feel someone knows more than they. Because of this perception we live

the Truth of someone else and never fully develop and nurture our own.

The symptoms you indicate are probably from many factors and perhaps

this disease is a definite part of it.

When you were feeling better you and your husband probably did not have as

many difficulties. When you started showing various symptoms part of his

feeling of helplessness was from you feeling helpless. They like all

emotions often feed off another. When you were feeling better you felt more

assured and in control. You were showing more of your own power. The trick

is to me to be in your own power every moment whether you're up, down or

somewhere in-between.

A little scared

>From: Scooby759@...

>

>Hi everyone!

>I have been a member of this list for quite a while and really enjoy the

back

>and forth talk. Sometimes I just plain feel like I should just be ignoring

>the fact that I have this stupid disease. I had a liver biopsy about 2

>months ago and the specialist wanted to put me on the meds. Then she found

>out that I was prone to depression (This was, I believe) because I am an

>alcoholic. I have been sober for 11 months and have had no depression

>problems. She wants to get a second opinion and I haven't heard from her

in

>a couple months. I called the other day and she said she would get back

with

>me and I haven't heard anything.

>Just a question, do any of you go through cycles where you feel terrific

and

>then you feel like sh**? I was feeling on top of the world for about two

>months (probably why I didn't keep nagging the Dr.) and now I am tired,

>nauseated, weak feeling with headaches. Do these sound like symptoms?

>Sometimes I get confused and try to talk myself into saying its just the

flu

>or something and then I think maybe I'm avoiding the real issue. Ugh I

hate

>this!

>I stayed home from work today and I think my husband is pissed. He is

>supportive when things are going well but when I don't feel my best he gets

>frustrated, like I'm lying or something. We've been married 19 years and I

>know he loves me, I just think he feels helpless. I just don't know what

my

>next step should be....any ideas?

>Thanks for being there!

>

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May 20, 1999

Oh , you described my husband's symptoms exactly-->alcoholism,

depression, Hep C, one-year remission, currently miserable--like the flu.

It's also interesting how you describe your husband's reaction. I know it's

much harder being the sick one, but it is also difficult living with someone

with a chronic illness. I find myself suggesting that maybe if he got up and

did something, he'd feel better. Dumb suggestion, eh?

May 21, 1999

Carolee, Don't expect anyone to live forever. That's denial. Accept

mortality and appreciate every minute. Arlene

May 21, 1999

Not a dumb suggestion at all! Although sometimes I get a little angry

because he does go out and do stuff (without me) and then I sit on the pity

pot! It's a vicious circle. I'm waiting right now to see if my insurance

will ok a second opinion to see if I can take the interferon.

Here's hoping!

May 22, 1999

Hi,

Sorry it took me so long to answer. But I just wanted to say I can really

relate to never knowing if its a synptom or just life. I guess we got to

hang in and its great that you are sticking by him. If he's anything like

me, he plays down the hep a little too.

August 30, 2003

Hello --

We can't take your pain away but you are definitely not alone. I also worry

about the long term cost of Enbrel eventhough I have insurance. I haven't

called my ins company yet but if I have to pay 1/2 of the cost of that one med

it will be about $700 a month. I can pay it but that is a big chunk of the

money I use to make life worth living and I am struggling with the decision. I

also know that without health it doesn't matter how much $ I have to play with

cuz I won't be able to play if I hurt too much. I have this discussion with

myself all the time but it is a lot like chasing my tail......uses a lot of

energy and gets me nowhere.

I'm sorry mtx is out of the picture for you cuz it did a good job for me and so

did arava. I also worry about the long term effects of Enbrel and all the meds

that are available. Very frustrating subject.

Good Luck and Take Care of Yourself, Cheri :-))

[ ] a little scared

i've been a member of this group for several years and would like to

thank you all for sharing your stories and insights.

i went on antibiotic therapy about 1.5 years ago and it helped for

about a year. now i seem to be having a flare that is kept fairly

mild with Lodine (NSAID). each day, however, i feel worse. i hate

complaining to my husband who worries. i have an appointment with my

Rheumy in a few weeks. i'm afraid to start on more drugs. my liver

didn't like mtx so i think he may want me to try Enbrel. i'm always

concerned about long term effects of drugs and, while i have med.

insurance, the long term cost of the protocol. So many of you have

situations so much worse than mine so i feel i should be able to

handle this, but i'm feeling really alone.

thank you for letting me get this out.

[Editor's Note: You are not alone. Good luck with the doc's visit.

D.]

September 1, 2003

: While the Methotrexate I'm on does have potential long-term

side-effects, so far, the Remicade has only had positive side-effects (i.e.,

clearing up most of the plaquing and psoriasis on my skin). The Remicade also

gets used up by the body which is why I need an infusion every 7 or 8 weeks; so,

it does not stay in the body like chemo-type drugs like Methotrexate or

Cyclosporine. This is one of the reasons my rheumi likes Remicade over other

drugs.

Just thought I'd share.

Take care!

Sally in Grass Valley