Re: Okay, here goes . . .

[Guest guest]

Im going to answer this but I want to think about it for a min,,, God Bless you

hon, you are not going insane, altho it might feel that way,,

Bnhoffer2@... wrote:I joined this list with the express purpose of getting

some answers and, well much as I'd prefer " lurking " I know my questions won't be

answered if I don't ask them!

Almost three years ago I was diagnosed with Hepatitis C, and that after almost a

year of being sick and not knowing why. I've heard of people being sick with

obscure things and having doctors suggest it was " all in their head, " I never

dreamed it would happen to me . . . it did. That's another story. However, that

early undiagnosis and then bungled diagnosis along with the " all in your head

attitude " seems to have set the tone for my past three years experience with

Hepatitis.

I've done interferon/rebetrol, almost the whole course. I quit month 10, another

story. It wasn't working anyway and my experience with interferon was horrific,

I'm still not sure if it is that medication or the disease itself that has so

radically changed my life.

It has been over a year since I ended the interferon so now I assume I'm dealing

with Hepatitis itself. I really want to know if others have similar problems or

if it's just me.

My biggest problem is fatigue, lack of enthuiasm-depression. It has been

profound during the last year.

Another debilitating issue is aches and pains. Sometimes it's my hands, my

chest, almost every day my back/spine just aches and aches.

The interferon damaged my thyroid-first it was overactive, then underactive-for

a while it didn't appear to be working at all-those days were tough. Now the

thyroid test lean towards the normal range, subsequently the doctors tell me my

thyroid is just fine- " you are probably just depressed. " While that may be true,

the message was very condescending.

I know that I lost most of my strength and body condition through the whole

ordeal-now it feels like a vicious cycle where I don't have the drive to get

back in shape-consequently a feel like a physical sloth and then I ache and just

feel worse and so on . . . I end up hating myself.

Am I a physical mess? or a psychological mess? I'm not sure whether I should go

to the doctor or the shrink.

Things are sort of a mess: I'm married (second marriage) with a blended family.

I feel like my husband has bungled quite a bit through this and while I'm trying

so hard to let it go and not hold it against him I find I have so much

resentment, and I feel very alone with this problem. I have six children (two

step) all of whom are teenagers. I've tried hard not to complain and burden them

and while it's true they don't see me as " sick " necessarily I feel like I can't

confide in them now that I've set the tone that my being sick is not going to

interfere with their adolescence.

I live in a semi rural area, about an hour or so from a " metro " area. The clinic

here has really done more harm then good. From the initial diagnosis I have

experienced dismissal and lack of knowledge about Hepatitis to total apathy. I

finally switched doctors this spring and I think I really got a good one-this

week we TALKED for at least 25 minutes, he was intelligent and respectful and

showed some sincere desire to try and make things better. Now if my mind can

just forget about three years of poor treatment and ignorant attitudes.

Okay, that's enough about me, I realize that I could go on and on. I guess the

main point here is that I know with my " head " that mistakes were made and

ignorance about Hepatitis is very real-I should be able to let that go . . . but

I haven't I feel condemned and broken and quite ready to go live alone with

cats.

I just want to know if it's me.

[Guest guest]

Breathe deeply, your are now among friends and family who understand what you

are going through.

Yes, we have all experience in some ways what you are talking about. My

experience with my GP was I was the one who asked him to do the panel.

Well we were ruling out alot of different things because what in the heck was

wrong with me. My marriage was almost on the rocks because my husband had

thought I had lost my ever loving mind. To go from a super Mom, Super nurse!!

Super woman to this lump of stuff that had no enegry at all. Slowly putting on

the pounds from lack of exercise. I said I am going to the doctor and finding

out if it is physical or mental because I know something is wrong.

Yup sure enough I had Hep C. Hmmmm hubbie felt guilty for a while because he

thought I was just being Lazy. Me, Lazy, former Super Woman. Never.

I went through the treatment before and was a non responder. I am currently on

treatment again, and I am a hip, hop, hippy responder. I am non-detectable.

There are some of us, that continue with treatment, some don't. We don't judge,

we love, we educate, we support, we are simply here for you to if you have

questions.

Love

Janet

Bnhoffer2@... wrote:

I joined this list with the express purpose of getting some answers and, well

much as I'd prefer " lurking " I know my questions won't be answered if I don't

ask them!

Almost three years ago I was diagnosed with Hepatitis C, and that after almost a

year of being sick and not knowing why. I've heard of people being sick with

obscure things and having doctors suggest it was " all in their head, " I never

dreamed it would happen to me . . . it did. That's another story. However, that

early undiagnosis and then bungled diagnosis along with the " all in your head

attitude " seems to have set the tone for my past three years experience with

Hepatitis.

I've done interferon/rebetrol, almost the whole course. I quit month 10, another

story. It wasn't working anyway and my experience with interferon was horrific,

I'm still not sure if it is that medication or the disease itself that has so

radically changed my life.

It has been over a year since I ended the interferon so now I assume I'm dealing

with Hepatitis itself. I really want to know if others have similar problems or

if it's just me.

My biggest problem is fatigue, lack of enthuiasm-depression. It has been

profound during the last year.

Another debilitating issue is aches and pains. Sometimes it's my hands, my

chest, almost every day my back/spine just aches and aches.

The interferon damaged my thyroid-first it was overactive, then underactive-for

a while it didn't appear to be working at all-those days were tough. Now the

thyroid test lean towards the normal range, subsequently the doctors tell me my

thyroid is just fine- " you are probably just depressed. " While that may be true,

the message was very condescending.

I know that I lost most of my strength and body condition through the whole

ordeal-now it feels like a vicious cycle where I don't have the drive to get

back in shape-consequently a feel like a physical sloth and then I ache and just

feel worse and so on . . . I end up hating myself.

Am I a physical mess? or a psychological mess? I'm not sure whether I should go

to the doctor or the shrink.

Things are sort of a mess: I'm married (second marriage) with a blended family.

I feel like my husband has bungled quite a bit through this and while I'm trying

so hard to let it go and not hold it against him I find I have so much

resentment, and I feel very alone with this problem. I have six children (two

step) all of whom are teenagers. I've tried hard not to complain and burden them

and while it's true they don't see me as " sick " necessarily I feel like I can't

confide in them now that I've set the tone that my being sick is not going to

interfere with their adolescence.

I live in a semi rural area, about an hour or so from a " metro " area. The clinic

here has really done more harm then good. From the initial diagnosis I have

experienced dismissal and lack of knowledge about Hepatitis to total apathy. I

finally switched doctors this spring and I think I really got a good one-this

week we TALKED for at least 25 minutes, he was intelligent and respectful and

showed some sincere desire to try and make things better. Now if my mind can

just forget about three years of poor treatment and ignorant attitudes.

Okay, that's enough about me, I realize that I could go on and on. I guess the

main point here is that I know with my " head " that mistakes were made and

ignorance about Hepatitis is very real-I should be able to let that go . . . but

I haven't I feel condemned and broken and quite ready to go live alone with

cats.

I just want to know if it's me.

[Guest guest]

Breathe deeply, your are now among friends and family who understand what you

are going through.

Yes, we have all experience in some ways what you are talking about. My

experience with my GP was I was the one who asked him to do the panel.

Well we were ruling out alot of different things because what in the heck was

wrong with me. My marriage was almost on the rocks because my husband had

thought I had lost my ever loving mind. To go from a super Mom, Super nurse!!

Super woman to this lump of stuff that had no enegry at all. Slowly putting on

the pounds from lack of exercise. I said I am going to the doctor and finding

out if it is physical or mental because I know something is wrong.

Yup sure enough I had Hep C. Hmmmm hubbie felt guilty for a while because he

thought I was just being Lazy. Me, Lazy, former Super Woman. Never.

I went through the treatment before and was a non responder. I am currently on

treatment again, and I am a hip, hop, hippy responder. I am non-detectable.

There are some of us, that continue with treatment, some don't. We don't judge,

we love, we educate, we support, we are simply here for you to if you have

questions.

Love

Janet

Bnhoffer2@... wrote:

I joined this list with the express purpose of getting some answers and, well

much as I'd prefer " lurking " I know my questions won't be answered if I don't

ask them!

Almost three years ago I was diagnosed with Hepatitis C, and that after almost a

year of being sick and not knowing why. I've heard of people being sick with

obscure things and having doctors suggest it was " all in their head, " I never

dreamed it would happen to me . . . it did. That's another story. However, that

early undiagnosis and then bungled diagnosis along with the " all in your head

attitude " seems to have set the tone for my past three years experience with

Hepatitis.

I've done interferon/rebetrol, almost the whole course. I quit month 10, another

story. It wasn't working anyway and my experience with interferon was horrific,

I'm still not sure if it is that medication or the disease itself that has so

radically changed my life.

It has been over a year since I ended the interferon so now I assume I'm dealing

with Hepatitis itself. I really want to know if others have similar problems or

if it's just me.

My biggest problem is fatigue, lack of enthuiasm-depression. It has been

profound during the last year.

Another debilitating issue is aches and pains. Sometimes it's my hands, my

chest, almost every day my back/spine just aches and aches.

The interferon damaged my thyroid-first it was overactive, then underactive-for

a while it didn't appear to be working at all-those days were tough. Now the

thyroid test lean towards the normal range, subsequently the doctors tell me my

thyroid is just fine- " you are probably just depressed. " While that may be true,

the message was very condescending.

I know that I lost most of my strength and body condition through the whole

ordeal-now it feels like a vicious cycle where I don't have the drive to get

back in shape-consequently a feel like a physical sloth and then I ache and just

feel worse and so on . . . I end up hating myself.

Am I a physical mess? or a psychological mess? I'm not sure whether I should go

to the doctor or the shrink.

Things are sort of a mess: I'm married (second marriage) with a blended family.

I feel like my husband has bungled quite a bit through this and while I'm trying

so hard to let it go and not hold it against him I find I have so much

resentment, and I feel very alone with this problem. I have six children (two

step) all of whom are teenagers. I've tried hard not to complain and burden them

and while it's true they don't see me as " sick " necessarily I feel like I can't

confide in them now that I've set the tone that my being sick is not going to

interfere with their adolescence.

I live in a semi rural area, about an hour or so from a " metro " area. The clinic

here has really done more harm then good. From the initial diagnosis I have

experienced dismissal and lack of knowledge about Hepatitis to total apathy. I

finally switched doctors this spring and I think I really got a good one-this

week we TALKED for at least 25 minutes, he was intelligent and respectful and

showed some sincere desire to try and make things better. Now if my mind can

just forget about three years of poor treatment and ignorant attitudes.

Okay, that's enough about me, I realize that I could go on and on. I guess the

main point here is that I know with my " head " that mistakes were made and

ignorance about Hepatitis is very real-I should be able to let that go . . . but

I haven't I feel condemned and broken and quite ready to go live alone with

cats.

I just want to know if it's me.

[Guest guest]

Hi,was on tx for 7 months and was not responding so I got off. But I

could hardly stand another day of it anyways. I had all the side

effects really bad and it took at least a year after I was off tx to

feel normal.

I did not seem to have a lot of symptoms b4 treatment so I am sure the

treatment messed me up and took a long time to recover from.

Depression is also something that goes along with treatment and I

thing that was a problem for me for a long time.

Hope you get feeling better,

[Guest guest]

Hi,was on tx for 7 months and was not responding so I got off. But I

could hardly stand another day of it anyways. I had all the side

effects really bad and it took at least a year after I was off tx to

feel normal.

I did not seem to have a lot of symptoms b4 treatment so I am sure the

treatment messed me up and took a long time to recover from.

Depression is also something that goes along with treatment and I

thing that was a problem for me for a long time.

Hope you get feeling better,

[Guest guest]

well this is the 2nd attempt to write this, puter went ziipttt,, darn it,,

well first off, welcome, Im glad you found us altho Im sorry you have this

disease!

Docs dont associate a lot of the symptoms you have with hep c,, and they ARE

WRONG! They call this a silent disease but thats cuz THEY dont feel what we

do...

This disease will affect every part of your life and it will not make a marriage

easier, but you can do this ,, Im sorry you were unable to tolerate tx, there

are a lot of others in the same boat, this treatment is not easy.. I was able to

do it only because of the support I had and I was able to spend an entire year

in bed ,, my hubby was so supportive and took me to every doc appt, and took

over absolutely EVERYTHING! had I been married to my former spouse, there would

have been no way I could have finished tx... but dont be hard on yourself..

Did you have a biopsy? How much damage do you have? stage? what genotype are

you?

There are lots of things you can do to help maintain your health as well too...

I am becomming an ND with a bachelors in nutrition so that being said,, I also

have to say that there is NO natural treatment that can cure this disease at

this point.. so dont get sucked into any schemes, there ARE however things you

can do and supplements you can take to help your liver maintain as long as

possible,, like Milk Thistle,, siliphos bound milk thistle is the best,

schizzandra is good, green tea is good.. but none of this will cure this

disease..

anyway, welcome,, and please feel free to email me personally if I can help you

in any way. Just remember that I am not a medical doc, but I do have 15 years in

emergency medicine as a 911 paramedic and anything I say to you should be run by

your doc before you try anything,,

ok thats my disclaimer, lol,, welcome to the group,,

jackie

Jackie on wrote:

Im going to answer this but I want to think about it for a min,,, God Bless you

hon, you are not going insane, altho it might feel that way,,

Bnhoffer2@... wrote:I joined this list with the express purpose of getting

some answers and, well much as I'd prefer " lurking " I know my questions won't be

answered if I don't ask them!

Almost three years ago I was diagnosed with Hepatitis C, and that after almost a

year of being sick and not knowing why. I've heard of people being sick with

obscure things and having doctors suggest it was " all in their head, " I never

dreamed it would happen to me . . . it did. That's another story. However, that

early undiagnosis and then bungled diagnosis along with the " all in your head

attitude " seems to have set the tone for my past three years experience with

Hepatitis.

I've done interferon/rebetrol, almost the whole course. I quit month 10, another

story. It wasn't working anyway and my experience with interferon was horrific,

I'm still not sure if it is that medication or the disease itself that has so

radically changed my life.

It has been over a year since I ended the interferon so now I assume I'm dealing

with Hepatitis itself. I really want to know if others have similar problems or

if it's just me.

My biggest problem is fatigue, lack of enthuiasm-depression. It has been

profound during the last year.

Another debilitating issue is aches and pains. Sometimes it's my hands, my

chest, almost every day my back/spine just aches and aches.

The interferon damaged my thyroid-first it was overactive, then underactive-for

a while it didn't appear to be working at all-those days were tough. Now the

thyroid test lean towards the normal range, subsequently the doctors tell me my

thyroid is just fine- " you are probably just depressed. " While that may be true,

the message was very condescending.

I know that I lost most of my strength and body condition through the whole

ordeal-now it feels like a vicious cycle where I don't have the drive to get

back in shape-consequently a feel like a physical sloth and then I ache and just

feel worse and so on . . . I end up hating myself.

Am I a physical mess? or a psychological mess? I'm not sure whether I should go

to the doctor or the shrink.

Things are sort of a mess: I'm married (second marriage) with a blended family.

I feel like my husband has bungled quite a bit through this and while I'm trying

so hard to let it go and not hold it against him I find I have so much

resentment, and I feel very alone with this problem. I have six children (two

step) all of whom are teenagers. I've tried hard not to complain and burden them

and while it's true they don't see me as " sick " necessarily I feel like I can't

confide in them now that I've set the tone that my being sick is not going to

interfere with their adolescence.

I live in a semi rural area, about an hour or so from a " metro " area. The clinic

here has really done more harm then good. From the initial diagnosis I have

experienced dismissal and lack of knowledge about Hepatitis to total apathy. I

finally switched doctors this spring and I think I really got a good one-this

week we TALKED for at least 25 minutes, he was intelligent and respectful and

showed some sincere desire to try and make things better. Now if my mind can

just forget about three years of poor treatment and ignorant attitudes.

Okay, that's enough about me, I realize that I could go on and on. I guess the

main point here is that I know with my " head " that mistakes were made and

ignorance about Hepatitis is very real-I should be able to let that go . . . but

I haven't I feel condemned and broken and quite ready to go live alone with

cats.

I just want to know if it's me.