Re: Personal HCV History - Sharon

[Guest guest]

Again, considering our age group, there is no way to know how we got this damn virus.  Coulda been a trip to the dentist for all we know.  That's my story and I'm sticking to it!

Hugs,Teri

On Wed, Nov 17, 2010 at 11:35 AM, <Honey1962@...> wrote:

 

Hi Sharon,

 

I too passed the virus onto my daughter at birth (she is 18), that's how I found out I had it last year when tests showed she had the virus and they told me to get checked to rule it out.  My son (he is 21) hasn't been tested yet because he doesn't have health insurance yet and I don't want him to be denied for a pre-existing condition.  I know my husband has it also, but he hasn't gone in to get himself checked.  My daughter was more understanding with me, I am afraid my son will be more angry about passing this awful thing on to them.  I know I didn't do it purposely and I told my OBGYN about my drug past when I decided to have children.  Sadly back in 1986 they weren't testing for HepC.  But we are all standing together and going to give it our best shot to try to beat this awful disease.  I am the only one who has started tx.  I am on week 13 of tx and currently undectable!  Be strong and don't worry about how you got it, just how to get rid of it.

 

God bless you and your family.

Cheryl in MD

[Guest guest]

SharonThere is not one person here that has not had to stand just where you are right now!! At least with having to face our own infections. To most of us, it came as a big shock!Yes, it is absolutely horrible that your sons received their gift at birth! Truthfully, I'm not so very sure that the researchers know yet, what the real percentage is, of children born with it. The research has only been going on for about 25 years and that isn't long enough to actually know. However, feeling sooo guilty is not going to help your sons! Shame is not going to help your sons! You have to become strong and capable, to prove to them that fighting for your life is worthwhile...Your

sister is correct about dealing with all the appointments etc. By the time that I even learned of my infection, I was already at stage 3 out of 4! All I knew for sure, was that I wanted to still be around to be a grandmother some day. Well, my son is in no hurry to make me one - so, I'm still in the battle. Just this past January, I completed my 2nd treatment and now I can say that finally I am CURED. Just the thought that I could have easily not known about my infection, gives me the chills, because the liver does not let us know how badly damaged it is, until it's almost too late. Plus, one thing is for sure in my mind!! I do not want to ever have to think - Liver Transplant!As for needles!!! You are talking to a first class baby here and absolutely no one would have convinced me that I would be able to poke myself 96 times.. However, just before I started on my 1st round of tx, I spoke

with a friend that is an insulin diabetic. She has to give herself a needle at least once every single day. Thus, when I wanted to chicken out - I only had to think of her and realize that I had no room to wail about it.So, please Sharon - get prepared, help prepare your boys and then let your husband help all of you when the time comes. It's not going to be easy; but, we have done it and so can you!!By the way, drinking any alcohol whatsoever, is the absolute worst thing that you can do!!Gloria

Don thanks because I need every prayer I can get I now have to tell my 14 yo son and that is really going to hurt. I am so afraid, but my husband will tell him( I cant even be there I am too afraid). My younger son is like me he is petrified of needles. I can't believe they got it thru birth I mean it's only 5% that they would get it. I still can't believe it. I think this is for a reason I really do. I don't know what yet but I know something good always comes out of something bad. Well my husband goes to a dr. and he got a letter one time in the mail that their were no signs of hep C in his body, that's what the letter said. So maybe he still has it but there are no signs, not sure. I will ask him again. I get

afraid to even talk about drs. to him. But he is physically fine said the dr. with all his lab work. So, I guess he is lucky. I have no idea. My son still has not gone to the liver specialist. I said they have to refer u to them Ed because these practitioners are not knowledgeable to know (he thinks it's bad news). My husband is going with him (I can't even support him I would run out of the room). I wish I wasn't so fearful, I have never told anyone and never talked about it til we have to help the children. Even my mother is in denial about us. But I have a sister who is insisting about the appointments because she said it's the ones that don't get checked who get really sick and do nothing and she is right. I can't even look at her when she talks to me I walk away I am so guilty. My husband feels so bad but I said to him Ed you didn't ask anyone to give you hep c did you? He felt better.

We have had rough upbringings so we were kinda crazy. My husband has been sober 2 yrs. now. He keeps yelling at me to go and I am going too. Wish me luck and I am going to make my appointment even though I don't want too. He said he will hold my hand the whole way thru. I want this out of my sons head pronto! Well I have stopped crying again and have to start my day. Pray for my sons that they good good lab results, please and thank you for hearing my story. Thank you for giving me your opinion and advise i need it.From: Christ

<ludichrist2000@...>WebWarriors grp < >Sent: Tue, November 16, 2010 3:41:27 PMSubject: [ ] Personal HCV History - Sharon

Hi Sharon

Thank you for sharing with us. [it is not called 'ranting'.]

Now I would like to share my viewpoints with you, if that is ok.

First, I am so sorry that the HCV is a 'family affair' for you all.

Several members here are caught up in a simular nightmare, or who have infected children.

My heart goes out to all of you, and every Hepper.

Now, it is possible for someone to contract HCV, then 'spontaneously clear'.

Unfortunately we all dont do this.

Question: How does your [ex] husband know that he is clear of the HCV?

Has your [ex] husband had a Viral Load test?

If he has a VL, then he is not clear.

Sharon, you must not be in denial or afraid to discuss your HCV.

It is not something to hide, or hide from. There is no SHAME in being sick.

You need to be open to learning about your health.

HCV is NOT a death sentence for MOST people.

But it could be if one sticks their head in the sand, and allows the disease to progress to a critical point.

In my opinion, it is better to know about a health issue, and treat it if possible, than to allow a 'correctable' problem have its way with us.

This is entirely your choice though, but I encourage you to seriously rethink this.

You say that you must now face the HCV issue because of your children.

Question: How can you help them if you wont help yourself too?

It seems to me that both things go hand in hand.

The more you learn about your HCV, the more you can share that knowledge, and the more help you can be to others.

I agree with you - your 18 y/o son [and other family members] needs to join this group also, so that we can all discuss this health issue with him, and share our knowledge and opinions with him.

We do try to cover everything - medical, psychological, social, personal, and so forth.

We have folks here in every HCV stage imaginable, and living every known situation.

Theres plenty of experiance and info to go around.

And the best way to help ourselves, is to help others.

- Your son needs to understand that it is no one's fault that people contract a disease like this.

If we had known beforehand, surely we would have taken steps to avoid it.

But we are not God.

And its not about FAIR - its about CARE.

- He needs to let us help him dispell his anger, blame, and fears.

He is carrying a load that he doesnt need to carry.

This also goes for you, Sharon.

You have done what you thought was right, within your abilitys, and everyone makes mistakes even with the best of intentions.

Wise people though, recognize their mistakes, and seek to correct them, and do better.

We cant change the past, but the future is a clean slate.

Now Sharon, I want you to please listen to me.

Everything that you are thinking or are feeling is totally NORMAL.

You are not alone in your thoughts or feeling.

We have all been where you are at, or close enough that we can sympathize with you.

We are all living the nightmare too.

And because of that, we can hold you close, and give you love.

Do you understand?

We are a family.

love

don in ks

Hi,

I live in Boston. I am married but separated with 3 children. Two of which got it from birth. My husband has it also, but he has no traces in his body anymore without treatment (strange i say) but glad for him. I don't talk about it. I don't want to know i am too afraid they will tell me im dying. My husband yells at me to see a dr. But I have to address this now because of my 18 yo son. He just found out and he is beside himself. He is very angry and blames us. I don't blame him either, but i know i never asked anyone to give me hep c. I only think about my son who is suffering with this in his head. He is seeing a liver specialist next week to talk about the results. We saw one when they were little and they were fine and I didn't want to give them interferon, sorry. I wouldn't do it. I guess i am not a happy hepper yet but i sure hope to be. I have never told

anyone but a few friends and my mother. I am having a hard time thinking about my son i feel terrible. He is like me afraid unlike my husband who is not. So my husband is going with my son to talk to the liver specialist. Please pray that it's good news we need it. I cry every friggin day about this friggin dragon and i am sick of it. I reassure my son that nothing is going to happen to him I promise. I wish he would get on the site and talk but he I know doesn't want to talk about it. He was crying in his room the other day with my husband and I can't stop thinking about his face and how terrified he was. Why us, why you why anyone. I have been in denial for a long, long time I think it's time now to get out from under the rug, lol well back to trying to get it out of my head because it's never out of it. Now it's in my sons head 24/7 so I pray for the cure and im their with everyone of you. thanks

for listening to my ranting,

[Guest guest]

Cheryl and SharonI know that when we first learn about our own infections, it comes as a big shock. I can only imagine that the exact same thing happens to our kids. However, once they begin getting all the facts - this should not be a blame game!!!Most of us do not really have any idea where or when we were infected! Sure, it's been shoved down our throats that it is a baby boomer, drug addict disease. If that was true, why is it that more than half the people that current know that they are infected, honestly have never been involved in harmful behaviour??Here in Canada, it was in the favour that our governments and health agencies to keep propagating the IV Drug theory. A class

action suit was launched back a number of years ago, because of the bad blood that was being used, even after the blood banks knew to screen for HepC. However, if a person could prove that they had received that blood; but, also copped to any drug use - they were out on their ears with a claim.Therefore, my belief is that none of us should so easily stigmatize ourselves with that theory. Plus, the fact remains that it really doesn't matter how we got it. The fact remains that we have to fight the dragon out of our bodies.Gloria

Hi Sharon,

I too passed the virus onto my daughter at birth (she is 18), that's how I found out I had it last year when tests showed she had the virus and they told me to get checked to rule it out. My son (he is 21) hasn't been tested yet because he doesn't have health insurance yet and I don't want him to be denied for a pre-existing condition. I know my husband has it also, but he hasn't gone in to get himself checked. My daughter was more understanding with me, I am afraid my son will be more angry about passing this awful thing on to them. I know I didn't do it purposely and I told my OBGYN about my drug past when I decided to have children. Sadly back in 1986 they weren't testing for HepC. But we are all standing together and going to give it our best shot to try to beat this awful disease. I am the only one who has started tx. I am on week 13 of tx and currently undectable! Be strong and don't worry about how you got it, just how to get rid of it.

God bless you and your family.

Cheryl in MD

[Guest guest]

I just have a simple question about how we got this thing called Hep-C.  Does it really make a difference in how we are treated if we know how we got it??  I mean are people treated differently if they acquired it from drug use, or from a hospital, or from any other way…I think not!  As far as I know, the treatment is basically the same no matter how we got it…am I wrong about this? Love ya all! RHStevej From: [mailto: ] On Behalf Of Gloria Sent: Wednesday, November 17, 2010 10:18 PM Subject: Re: [ ] Personal HCV History - Sharon Cheryl and SharonI know that when we first learn about our own infections, it comes as a big shock. I can only imagine that the exact same thing happens to our kids. However, once they begin getting all the facts - this should not be a blame game!!!Most of us do not really have any idea where or when we were infected! Sure, it's been shoved down our throats that it is a baby boomer, drug addict disease. If that was true, why is it that more than half the people that current know that they are infected, honestly have never been involved in harmful behaviour??Here in Canada, it was in the favour that our governments and health agencies to keep propagating the IV Drug theory. A class action suit was launched back a number of years ago, because of the bad blood that was being used, even after the blood banks knew to screen for HepC. However, if a person could prove that they had received that blood; but, also copped to any drug use - they were out on their ears with a claim.Therefore, my belief is that none of us should so easily stigmatize ourselves with that theory. Plus, the fact remains that it really doesn't matter how we got it. The fact remains that we have to fight the dragon out of our bodies.Gloria Hi Sharon, I too passed the virus onto my daughter at birth (she is 18), that's how I found out I had it last year when tests showed she had the virus and they told me to get checked to rule it out. My son (he is 21) hasn't been tested yet because he doesn't have health insurance yet and I don't want him to be denied for a pre-existing condition. I know my husband has it also, but he hasn't gone in to get himself checked. My daughter was more understanding with me, I am afraid my son will be more angry about passing this awful thing on to them. I know I didn't do it purposely and I told my OBGYN about my drug past when I decided to have children. Sadly back in 1986 they weren't testing for HepC. But we are all standing together and going to give it our best shot to try to beat this awful disease. I am the only one who has started tx. I am on week 13 of tx and currently undectable! Be strong and don't worry about how you got it, just how to get rid of it. God bless you and your family.Cheryl in MD

[Guest guest]

Treatment is no different no matter how you got the infection.   Public perception... whole nother story...  damn stigma.  However, I don't think anybody REALLY knows how they got it.  Myself included and I thought I had it pretty well pegged.  I still think this was bestowed on us as kids with those damn injection guns they used for giving us inoculations.  But yes, Steve, you are correct.  The actual treatment is the same.  Nothing changes based on how you acquired it.  

Hugs,Teri

On Thu, Nov 18, 2010 at 1:29 AM, S. Murray <stevej@...> wrote:

 

I just have a simple question about how we got this thing called Hep-C.  Does it really make a difference in how we are treated if we know how we got it??  I mean are people treated differently if they acquired it from drug use, or from a hospital, or from any other way…I think not!  As far as I know, the treatment is basically the same no matter how we got it…am I wrong about this?

 Love ya all! 

RHStevej 

From: [mailto: ] On Behalf Of Gloria

Sent: Wednesday, November 17, 2010 10:18 PM Subject: Re: [ ] Personal HCV History - Sharon

   Cheryl and SharonI know that when we first learn about our own infections, it comes as a big shock.  I can only imagine that the exact same thing happens to our kids.  However, once they begin getting all the facts - this should not be a blame game!!!

Most of us do not really have any idea where or when we were infected!  Sure, it's been shoved down our throats that it is a baby boomer, drug addict disease.  If that was true, why is it that more than half the people that current know that they are infected, honestly have never been involved in harmful behaviour??

Here in Canada, it was in the favour that our governments and health agencies to keep propagating the IV Drug theory.  A class action suit was launched back a number of years ago, because of the bad blood that was being used, even after the blood banks knew to screen for HepC.  However, if a person could prove that they had received that blood; but, also copped to any drug use - they were out on their ears with a claim.

Therefore, my belief is that none of us should so easily stigmatize ourselves with that theory.  Plus, the fact remains that it really doesn't matter how we got it.  The fact remains that we have to fight the dragon out of our bodies.

Gloria 

  Hi Sharon,

 I too passed the virus onto my daughter at birth (she is 18), that's how I found out I had it last year when tests showed she had the virus and they told me to get checked to rule it out.  My son (he is 21) hasn't been tested yet because he doesn't have health insurance yet and I don't want him to be denied for a pre-existing condition.  I know my husband has it also, but he hasn't gone in to get himself checked.  My daughter was more understanding with me, I am afraid my son will be more angry about passing this awful thing on to them.  I know I didn't do it purposely and I told my OBGYN about my drug past when I decided to have children.  Sadly back in 1986 they weren't testing for HepC.  But we are all standing together and going to give it our best shot to try to beat this awful disease.  I am the only one who has started tx.  I am on week 13 of tx and currently undectable!  Be strong and don't worry about how you got it, just how to get rid of it.

 God bless you and your family.

Cheryl in MD 

[Guest guest]

RHSteve,

No, you're absolutely right! It's all treated the same, source be damned!

During our weekend in Boston, I realized how much the perception of stigma had effected myself and the group of peers.

One thread that ran through the weekend as we started comparing experiences is it doesn't make one bit of difference how you got it, the difference is made in what you can or will do about it! Screw the source, let's get on to the cure and be done with it.

Vertex made it very clear, their goal is eradicating this disease, make it as rare as mumps and polio, and a big part of that is undoing and minimizing the stigma attached to this disease, getting past that and focusing on the cure.

Keep it up, buddy!

LHSteveLife is much more fun when thought of as a scavenger hunt as opposed to a surprise party. Jimmy Buffett RE: [ ] Personal HCV History - Sharon

I just have a simple question about how we got this thing called Hep-C. Does it really make a difference in how we are treated if we know how we got it?? I mean are people treated differently if they acquired it from drug use, or from a hospital, or from any other way…I think not! As far as I know, the treatment is basically the same no matter how we got it…am I wrong about this?

Love ya all!

RHStevej

[Guest guest]

Just my personal, not so humble opinion here, but I think it depends on where one lives and who the people really are. I have seen doctors with attitudes before you even tell them how you think you got it. Even on the Internet, it kinda depends on the people really are. For example, I have a group that is for the designs I create in Adobe Photoshop. I make eMail stationery, blog headers, signature tags, etc. I've been trying to re-create the group I had when I was doing treatment; however, it's clear that isn't going to happen. As soon as I started talking about Hepatitis C, letting people get to know me a little bit, they started dropping like flies from the group, go figure. I play World of Warcraft, going on 3 years now. We live in such an era that people will even bash you and treat you differently because of how old you are playing an online game. In case you haven't noticed, I don't have much respect for humanity. Just because my hubby is 21 years younger than me, that places another label on me. People are so in to labeling the world we live in, and so unjustly. Didn't mean to get off track there, but the world is hell bent on putting us all in to categories.

-- RE: [ ] Personal HCV History - Sharon

I just have a simple question about how we got this thing called Hep-C. Does it really make a difference in how we are treated if we know how we got it?? I mean are people treated differently if they acquired it from drug use, or from a hospital, or from any other way…I think not! As far as I know, the treatment is basically the same no matter how we got it…am I wrong about this?

Love ya all!

RHStevej

From: [mailto: ] On Behalf Of Gloria Sent: Wednesday, November 17, 2010 10:18 PM Subject: Re: [ ] Personal HCV History - Sharon

Cheryl and SharonI know that when we first learn about our own infections, it comes as a big shock. I can only imagine that the exact same thing happens to our kids. However, once they begin getting all the facts - this should not be a blame game!!!Most of us do not really have any idea where or when we were infected! Sure, it's been shoved down our throats that it is a baby boomer, drug addict disease. If that was true, why is it that more than half the people that current know that they are infected, honestly have never been involved in harmful behaviour??Here in Canada, it was in the favour that our governments and health agencies to keep propagating the IV Drug theory. A class action suit was launched back a number of years ago, because of the bad blood that was being used, even after the blood banks knew to screen for HepC. However, if a person could prove that they had received that blood; but, also copped to any drug use - they were out on their ears with a claim.Therefore, my belief is that none of us should so easily stigmatize ourselves with that theory. Plus, the fact remains that it really doesn't matter how we got it. The fact remains that we have to fight the dragon out of our bodies.Gloria

Hi Sharon,

I too passed the virus onto my daughter at birth (she is 18), that's how I found out I had it last year when tests showed she had the virus and they told me to get checked to rule it out. My son (he is 21) hasn't been tested yet because he doesn't have health insurance yet and I don't want him to be denied for a pre-existing condition. I know my husband has it also, but he hasn't gone in to get himself checked. My daughter was more understanding with me, I am afraid my son will be more angry about passing this awful thing on to them. I know I didn't do it purposely and I told my OBGYN about my drug past when I decided to have children. Sadly back in 1986 they weren't testing for HepC. But we are all standing together and going to give it our best shot to try to beat this awful disease. I am the only one who has started tx. I am on week 13 of tx and currently undectable! Be strong and don't worry about how you got it, just how to get rid of it.

God bless you and your family.

Cheryl in MD

Autumn

IncrediMail Letter

©studio reflections

3rd November, 2010

[Guest guest]

I don't understand why there have to be categories.  I am sorry you had to experience that.. it's just not right.  You won't find any of that here...  you may find that a few of us are a little on the crazy side...  but no categories at all.   We deal with what we have and we try to have some fun along the way...  laughter helps... it's good medicine.  

I'm glad you are able to join us.  You'll like it here.  There are people in all stages of their walk with Hep C..  it almost sounds like you are cured.  I hope so.  I have gone thru treatment and reached SVR and now cured stages.  Today my mood has me on tilt mode..  so be prepared for antics from me!

Hugs,Teri

On Thu, Nov 18, 2010 at 3:35 PM, Studio Reflections <studio.reflections@...> wrote:

 

 

Just my personal, not so humble opinion here, but I think it depends on where one lives and who the people really are.  I have seen doctors with attitudes before you even tell them how you think you got it. Even on the Internet, it kinda depends on the people really are.  For example, I have a group that is for the designs I create in Adobe Photoshop.  I make eMail stationery, blog headers, signature tags, etc. I've been trying to re-create the group I had when I was doing treatment; however, it's clear that isn't going to happen.  As soon as I started talking about Hepatitis C, letting people get to know me a little bit, they started dropping like flies from the group, go figure.  I play World of Warcraft, going on 3 years now.  We live in such an era that people will even bash you and treat you differently because of how old you are playing an online game.  In case you haven't noticed, I don't have much respect for humanity.  Just because my hubby is 21 years younger than me, that places another label on me.  People are so in to labeling the world we live in, and so unjustly.  Didn't mean to get off track there, but the world is hell bent on putting us all in to categories.

 

 

 

 

 

-- RE: [ ] Personal HCV History - Sharon

 

I just have a simple question about how we got this thing called Hep-C.  Does it really make a difference in how we are treated if we know how we got it??  I mean are people treated differently if they acquired it from drug use, or from a hospital, or from any other way…I think not!  As far as I know, the treatment is basically the same no matter how we got it…am I wrong about this?

 

Love ya all!

 

RHStevej

 

From: [mailto: ] On Behalf Of Gloria

Sent: Wednesday, November 17, 2010 10:18 PM Subject: Re: [ ] Personal HCV History - Sharon

 

 

Cheryl and SharonI know that when we first learn about our own infections, it comes as a big shock.  I can only imagine that the exact same thing happens to our kids.  However, once they begin getting all the facts - this should not be a blame game!!!

Most of us do not really have any idea where or when we were infected!  Sure, it's been shoved down our throats that it is a baby boomer, drug addict disease.  If that was true, why is it that more than half the people that current know that they are infected, honestly have never been involved in harmful behaviour??

Here in Canada, it was in the favour that our governments and health agencies to keep propagating the IV Drug theory.  A class action suit was launched back a number of years ago, because of the bad blood that was being used, even after the blood banks knew to screen for HepC.  However, if a person could prove that they had received that blood; but, also copped to any drug use - they were out on their ears with a claim.

Therefore, my belief is that none of us should so easily stigmatize ourselves with that theory.  Plus, the fact remains that it really doesn't matter how we got it.  The fact remains that we have to fight the dragon out of our bodies.

Gloria

 

 

Hi Sharon,

 

I too passed the virus onto my daughter at birth (she is 18), that's how I found out I had it last year when tests showed she had the virus and they told me to get checked to rule it out.  My son (he is 21) hasn't been tested yet because he doesn't have health insurance yet and I don't want him to be denied for a pre-existing condition.  I know my husband has it also, but he hasn't gone in to get himself checked.  My daughter was more understanding with me, I am afraid my son will be more angry about passing this awful thing on to them.  I know I didn't do it purposely and I told my OBGYN about my drug past when I decided to have children.  Sadly back in 1986 they weren't testing for HepC.  But we are all standing together and going to give it our best shot to try to beat this awful disease.  I am the only one who has started tx.  I am on week 13 of tx and currently undectable!  Be strong and don't worry about how you got it, just how to get rid of it.

 

God bless you and your family.

Cheryl in MD

 

 

Autumn

IncrediMail Letter

©studio reflections

3rd November, 2010