My daughter does not want me around her 8 year old.. I am beyond crushed.

[quixote51]

I was told in 93 I have Hep C..I have not had treatment because I have no insurance and I have no money..I am actually poor but not poor enough for medicare or whatever it is..Anyhow, I don't drink, do drugs or anything..My daughter and her husband have a job offer that would bring them back to her home town and she told me last night on the phone that the main reason she does not want to come home is because she is afraid I will give it to her 8 year old daughter..I am so sad and hurt..I was there when my grandchild was born..I cut the Cord..She is my only daughter and my grandchild and I are so close..We talk on the phone everyday..She told me that the reason she never comes to stay with me is that she is afraid my house is contaminated..Her husband runs a funeral home so you would think she knows better. I am thinking about just sticking my thumb out and disappearing..but, I do have a husband and alot of pets..I can't help it..I am so depressed..I don't know how to even get past it..I have cried till I'm dry. Seems like no one wants me. Thanks for listening..

[quixote51]

Well she didn't make it after all..they are really looking for a dream house..lol..so, I am still looking for the right house..but, she has called everyday and I do feel her love..I love to hear her laugh..lol..everything is going to be fine..I have decided I love the message board..It is wondeful to come here and feel like someone else knows how I feel..Thanks.

[friole]

Dawn, I am encouraged grately by your last post.  You and your daughter have a lot to work out but it may actually happen and your relationship will be better for it.

Beamish - sounds like you are in the same boat as I am.  I have worked with the same people for over 20 years  but kept the hep C to myself and it is getting harder to do.  I am probably going to have to out myself real soon.  Friday a substitute nurse from the hemotologist called and identified herself by the oncology dept (the regulars know to use my cell phone)to the secretary. They probably all think I have cancer. We are a tax accounting firm and the workload will get crazy in a month and they need to know what is happening to me.

I would like to get some of those pamplets from the CDC to pass out when I do.  Tator - how did you get them - online?   I will do some checking

frijole

[beamishboy]

site on janis cites 3% of worldwide pop. is hcv--i too ,feel almost duty bound to be open about my status;people wonder why i have lost 55lbs,why i am reducing workload(to nothing) ,what's up? the more i reveal,the more i learn..There are many hep-c pos. people& apparently many who carry the virus & are unaware! Strength in Knowledge......also if we keep it secret we are concedeing that there is something to be ashamed of(maybe).....like it's dirty linen we don't want aired in public..I am not by nature a share my troubles kinda guy;when i trx for cancer i did not 'share' my condition much at all......And sum who did know acted as if cancer was contagious(not my family,thk god!!!)--They only liked Healthy tommy!!!!!!!!--others commiserate all to well,slightly too well.........Anyways,i am not a public speaker for hep-c awareness(YET) but i can be opening eyes&minds about this Nasty,stinking bug!!!!!!!--To The Barricades People!!!

[beamishboy]

hey thanks ,i needed that!!!!!!

[cquest]

Thank God you daughter might be sensible after all! What a tragedy to be estranged from your family for no reason!

I have a terrible time keeping my own secrets...I am a vault for other peoples secrets...just can't keep my mouth shut about how I feel!

At work, I have sort of become the resident 'poster child' for this disease...there is a guy that is very involved in the support group and he is always emailing me w/ websites, etc...Everybody has a family member or knows somebody that has this! How sad is that?! A co-workers father died of this 20 years ago...caught it from WW2 blood transfusion! This disease has been around so long and look how little they know about it...
Cin

[GoofyDad]

Hi Dawn. I'm pleased to hear things are looking up already.

Unless your daughter has some sort of personal plumbing problems, this isn't my strongest area, so I'll try to be brief :)

Although it strikes me that the daughter could handle this better, remember that it must be difficult for her too. It's unlikely that she's being unreasonable for the sake of unreasonability. More likely, she has fears for both her Mom and her daughter. No doubt she's having trouble reconciling those issues, and what you see is the unresolved confusion she harbors within.

It sounds like you're on the right track, and that's great news. I wouldn't be shy about seeing a therapist to help sort out these feelings, and maybe your daughter will drop in when her time is right.

Best wishes.  

[cquest]

Wen I told my office mates about this, I sensed some fear...I brought a bunch of pamphlets to work and spread them out on the conference room table...they read them, asked questions, and I could feel the tension ease...all it took was some communication and education.

Education is what your daughter needs and PRONTO! This is what I freakin' HATE about this disease! The misconceptions and ignorance! How how wrong to spread THAT disease to a child!

Then this poor woman at work was exposed to TB...now that's AIR borne! Imagine having a disease like that? She has to take medication now, the Health Dept. is MAKING her take it so it doesn't turn into full blown TB...I am sure she would trade places with me in a heartbeat...  
Cin

[quixote51]

well, she is coming down tomorrow to see a house so...We have talked a couple of times today and it went well..well, we didn't mention it, but I could just tell it's going to work out..I called one of her old friend's that has a husband with hcv for 11 years..they even have a son..she told me that they have like you should be around anyone bleeding..she says they now always have bandaids and when someone gets a cut, they stop, fix it and clean it up carefully..and no one uses anyone's razor or toothbrush..just like it should be anyhow..so, she is going to visit with her when they get moved down..I gave my house a good cleaning today, too..so, I am feeling better..you guys just made me realize the problem is solvable..Thnks...Also. after the holidays I am going to get myself checked out somehow..Figure out where I am..I feel so Lucky to have found you all..Thanks dawn

[beamishboy]

i am in a similiar situation in regards to income/assets/health insurance..New york state has a plan-GHI-that has been very good for me..The drug co. Schering also provides free meds thru Commitment to Care program--800-521-7157..........You can be treated if that is the appropriate path for you!!!---See a Hep-c specialist,there are clinics that specifically treat us...Find out your status,get a biopsy(less painful then a visit to the dentist) and seek out the advice of Medical Professionals about your current condition and options...Not knowing is soo unsettling & i sure do want to hear about your reconciliation w/ daughter--Good Luck

[NYgirl]

I am so sorry for this pain that you are in.  Ignorance is just a horrible thing and they are right someday your daughter will realize she has been such a fool.

On another note I know that the drug companies have ways for people to receive the meds for free fo those who are in your shoes.  If you did want to treat perhaps you could do that.

Again my heart just breaks for you. Somehow you need her to find out that if it were indeed that communicable...we all would have been shipped off to Hepper Island instead of going to work and church and things like that!

[silverangel]

Sorry to hear about your situation. Sad but true, alot of naive people out there have fears of the unknown. I know that lots are freaked out about HIV, and those who are, typically group all the blood born viruses together. They don't realize sometimes Hep C is NOT HIV. It's sad when your own family members are affected. I don't understand though, how she can truely feel this way, when she let you cut the umbilcal cord when the child was born.?

Anyway, you also mentioned that you have lots of pets, are they inside pets? That could possibly be part of her fears, as far as germs go. Ask her how she feels about that.

My advice, keep a clean house, and give her more information on hep c.

PS: Have you talked to her husband? How does he feel?

Sylv

[doll face]

I can definately understand you being hurt. When I had hep c my daughter in law never really said it out loud but did very much so by her actions that she was scared to let me by my only grandchild. Especially after seeomg how sick I would get after  doing my shot while visiting. Then one day I had enough and showed her and my son some pamplets and a letter someone posted here to relatives about hep c. After reading them, they both apologized to me and there has not been any more negative actions since. I hope for your sake and thiers that they will see you are no harm to your grandchild. Good luck.

[friole]

What a beautiful name, and you sound like a beautiful soul on a  journey.  I can't really add anything to what has been already said here by the gracious members of the board.  Many of us are dealing with the same issues or choosing to stay in the closet to avoid the issues.

I wonder if your granddaughter was born before 1993 when you were diagnosed or what has changed since then.  Now your daughter seems to think Hepatitis C is airborne which or course it is not, and in 1993 she actually let you cut the umbilical cord.  Is there any possibility she already worries that her daughter is infected?  Would it ease her fears to get her daughter tested, and even herself?

I hope you will begin to pursue treatment which really is not that bad (for some - me for example).  I also found out I had hep C about 1992 or so and just started treating in July.  The drug companies will provide the meds if you qualify, and it sounds like you do so please make some contacts - look for a support group like Strator suggested and begin this journey

Don't fight too many windmills
frijole

[johnisme]

Here is a link with lots of good info. Best of luck to ya.


http://janis7hepc.com/myths_and_facts.htm

Stay well...........John

[NikoS]

I myself was thrown out of my parents home by my father upon diagnosis & he did not want me anywhere near my niece & nephew despite my brothers protests...


I was devastated & it took about 2 months before my father relented. It was just a lack of understanding & education. That was 10 years ago, since then I have had his support, often silently but I know he did the absolute best.

When I commenced treatment this year he was there whenever I needed him, but he also very much respected my need for space & to take the journey alone.

So I wish you the best & only hope your daughter will come to understand, I'm sure it would break your granddaughters heart to miss out on the relationship out of foolishness...

all the best

[strator]

That is such tough going for you there, and my heart is with you. The sad fact of the matter is...most of the general public has no clue about HCV, and that includes myself prior to my diagnosis. Every family member and friend (and even some I met who had been diagnosed with HCV themselves )- I pretty much had to explain what it was when I told them I had HCV. I have a very loving supporting family -however none of them went running out in the beginning to learn about it. With some in my family I certainly approached them differently then others. Giving them just as much as they, or I, could handle at a time.

Just as some of us may have gone through a period of denial-so might a loved one.

We can be angry and perplexed that there isn't awareness in the world. That doesn't make the individuals in the world ignorant or uncaring - lets face it even by the 3rd day or 2nd week after our own diagnosis, (or yesterday) how many of had a real concept of what the H this was. If HCV wasn't affecting us or a family member how many of US would know anything about it. Either fear or a desire for a better life probably got some of us at least to get educated about HCV. We didn't have a lot of choice.
Maybe it makes your daughter too sad to deal with it -right now. Hey I had to go about attacking this disease in baby steps myself. I got through each step when I was ready. When I found out about my HCV -I sat for days in front of the computer afraid to look it up and find out things I didn't want to hear.

Love is the big transformer. The kind of love that gives us patience when we have to work for it. The kind of love that will allow a loved one to break through their own fears for us.

I was never a very pro active person but when I began to deal with this...the more knowledge I got and became involved in preparing for HCV through support groups and therapy, the more my family asked questions and became confident that this wasn't more than we could handle- TOGETHER.
In therapy I took weeks sometimes talking about how my ex or my son or so and so would react, or how I would deal with it if they didn't react well, I meither wanted to overwhelm them or be a lonely martyr, so I asked for help. I certainly didn't come up with any of the support group or therapy ideas or insurance solutions(believe me I thought I'd be robbin banks)on my own...it all started with 1 phone call.
quixote - I don't know where you live, but try making some calls or finding a group or a social service in your area(and yes a Dr may be the place to start). You may do best with your daughter with some professional guidance, (she may tuck literature in a bottom drawer like I first did when they gave it to me).
Whatever the story is with your daughter today- it won't change by itself- but YOU CAN rewrite what the story might be tomorrow.
God Bless you and your daughter and grandchild,
Don

[cao]

Have you considered mailing her a printout of an online article detailing the facts about HCV?  Perhaps if she could read the information on her own terms, she might be educated a little more and a little less fearful.  Unfortunately, the world is full of people ignorant about the realities of living with HCV.  I'm so sorry that one of those people has to be your own daughter.

[cuteus]

oh geez! not one of those drs that only looks at the alt/ast levels and based the damage assessment on that! I just went to a program where the speaker stated that most people present normal levels and it means nothing in terms of liver damage.
check clinicaltrials.gov  to see if there is any recruiting going on that might fit you. they might even do a biopsy to see what the damage really is. You are flying blind.

Please make sure you know everything about the state of your liver soon.

[quixote51]

beamishboy,that is very sweet..

[quixote51]

I think I will talk to her husband..I do love all 3 of them more than anything..Now that I think about it more, (because it caught me off guard after all these years) is that maybe it is her..Maybe my house could be cleaner but it's not bad..She is very protective with my granddaughter..I can see how this could be overcome with some patience and guidance..Also I don't have a clue what geno I am or anything..I went to one doctor, he said I was in good shape, treatment was rough and I had time for research to come up with better treatment.. that was 8 years ago..and $1200 ago..I would love to see if I could be treated..

[beamishboy]

Most gracious lady--This too shall pass..I am sure you can make it better.You are strong& smart & you love them..

[cuteus]

hum, it does sound like she has a bit of a problem, your daughter that is.   I am afraid she does sound like someone with OCD, or some disorder that needs treatment, because the disorder is keeping her from being rational or seen the facts for what they are.  Maybe you can speak with the husband and see if he is a little more open to reality than she is.  It could be that no matter how much literature and facts you give her, her phobia is not going to let her reason.  I agree that counseling is in order.
quixote, do you qualify for the Pegassist program? Roche can pay for your treatment or you can get in a research trial, if you are interested.

what genotype are you, and what is the damage to your liver, do you know?

[quixote51]

Kidding..maybe..

[quixote51]

Cervantes................Yes, I am Catalina de Salazar from the 15th Century..Just another journey..Most people never notice.