HEPITITIS C

[BUTTERFLY7]

i have a sister who has hepititis c and i don't think she is telling me the whole story, she said she contracted it cleaning a whirl pool, i know she is not well, we don't live in the same state, she tells me she is having to give herself several kinds of injections once a week, also taking a medication called pegasys and procrit, I am really concerned about this just by what i have told you could you give me some kind of idea as to her what here condition might be, she had told me at one time that she was considered for a possible liver transplant, but hasn't mentioned it anymore.  thanks

[Tallblonde]

I hear ya!  

There's another book that might be helpful to you...it's called "Stop Walking on Eggshells - Coping When Someone You Care about Has Borderline Personality Disorder," by Paul T. Mason.

BPD is a fascinating disorder to read about, but pure hell if you're unlucky enough to be in a relationship with someone who has it.  Many people are forced to cut off all contact with the BPD person in order to save themselves.  If you go to the "Nook" website, you'll find that there are many people in the same shoes.

Take care,
Susan

[nanniegea]

I think you may be right. She does have something going on for sure. She wants respect but refuses to give it and see's everything as black or white, there are no gray area's with her!!! Like I said, I have been walking on egg shells around her my whole life and now that I am in need, she treats me like this. I guess the only thing I can do is to reach out to those who understand and protect myself the best way I can. It's really too bad that she can be this way cause she does have her good points, I just wish she had less of the other kind.

[BUTTERFLY7]

thanks to every one that responded to my question about my sister, thanks for the advice about how she got it, you are absolutely right, she has it doesn't matter how she got it  thats in the past now, she has to deal with it., and i do tell her i love her everytime i speak with her on the phone, i will try to be more encouraging to her by sending cards, phone calls, etc. i know she is seriously ill, just trying to understand what she is going thru, but had no idea.  Again thanks, and i will keep each and everyone of you in my prayers, because my God is a Great God. God Bless

[nanniegea]

Thanks everyone, I do feel better just letting it out. The hardest thing in dealing with my mother is that I have been trying to please her since a little child. I would do anything to keep her in a good mood so she wouldn't be mad and take it out on me. Now that I am 47yrs old I shouldn't feel that way but when you do something a certain way your whole life...well, it makes it hard to change. She is a VERY controlling person and if I ever let out how she really makes me feel at times, we would probably never speak again and there have been times where I almost wished it to be so. I guess the only thing to do is to let it out with people who are safe and, if need be, stay away from my mom. Thanks for listening and may God bless.

[honey1616]

Wow,,,,You got to give her credit for boldness lol  That is just way too much to call you that many times and then show up at your bedside.  I think you handled it very nicely to say the least and probably wouldn't have hurt to let that riba rage kick in at that moment.  The getting out to make you feel better does not always work with this treatment.  Sometimes we may be getting out and have anemia and walk to far and pass out on the person that encouraged the day outing.  And it is hard,,,if they have no idea what you are going through.  My mom lives here in town and told me to call her when I felt up to it and she would cook meals here and there but it really was wonderful for her not to be mad at me if I didn't feel like talking.  haha At times she would send me email to catch up the latest if we hadn't talked in a couple of days.  Some days you just have your hands full with just the regular day to day stuff and that can be so overwhelming on this treatment.  When I felt good,,,I caught up everything I could and when I felt bad,,,I was on the couch or my chair at computer is comfy and would check in with everyone here to make sure I was still normal range for tx lol  And then I might take a cat nap and wake up to more postings to read here and emails.haha  It sounds funny to some but sometimes my mom got more detailed info from me by the computer.  My throat stayed messed up alot during tx and it would go out on me if I talked on phone for long periods.  Honestly,,,,you need to sit your mom down and tell her,,,,If I say I don't feel up to it,,,I mean it.  Please honor my wishes and when I'm feeling good certain days,,,maybe we can get together for a visit. Be Firm,,,She certainly is.  Nan, you take care of yourself and don't get over tired.  You have cirrosis and trying to cure yourself with tx,,,,if she doesn't understand that,,,Well that is her problem!  Hang in there!

[Tallblonde]

I may be going out on a limb here, but your description of your mother made me wonder if she's someone with Borderline Personality Disorder (BPD).  If she is, there's an excellent book called "Understanding the Borderline Mother" by Christine Ann Lawson that can help you. There's also an online forum called "The Nook" that is extremely good.  http://www.bpdcentral.com/nookboard/index.php

Susan

[nanniegea]

I would like to know if anyone has advice in dealing with a mother who refuses to take what I am dealing with seriously. I have hepc/cirrhosis and am going through tx. As we all know, tx can be a very hard thing to deal with and when you are asked to do something, like go to dinner, and don't feel up to going out, how do you handle it when you tell them no but get 4 or 5 phone calls, then on top of that, after I thought all had settled down, I went to take a nap. Well, I was awoken by my mother who had followed my boyfriend into my bedroom and woke me up. I sat up and looked at her and said, "what, didn't you belive me"? She said, "of course I believe you" but in an instant I could tell she was pissed and we haven't spoken since. It's like she had an agenda and when I would not go to dinner she took offence. She started telling me how I needed to get out and take my mind off of what I am dealing with, this all happened the day after my shot when I am feeling the worst. I have told her all of this but she obviously doesn't hear me or else is so self centered that what I'm going through just does not matter. I just don't know what to do, I get the feeling that she is pissed at me for being sick. I understand she may be scared too, but I don't need the added stress she puts me under. Anyone care to comment with any advice on this dillema???

[scruffy]

I had a difficult time with family during tx(some family-not all) I got alternately pissed off and then depressed. Depressed people have a worse response to tx.If you are not on an anti-depressant it may help to get one. You won't change your family-you can only tell them the situation. They need to back off. YOU are the one in need here. My very best to you, frank

[Califia]

I've encountered so much of that over the years.....many, many years.....and I'm not sure it's gotten any easier to deal with.  At least I'm far less reactive, but inside all this stuff still rankles.   I remember my own mother asking me one too many times, "But how did you get this?"  and my answering that the real question was how was I going to live with it, and did she realize that her obsession was not helping my situation at all.   That was a real moment of breakthrough for us.  But first I had to speak out for myself very clearly and very firmly.   And I could only do that after I had worked through a lot of my shame and guilt for getting sick, and for putting my family through so much worry and distress.   The problem kept resurfacing, though.   I just got better at not letting it in so much.

The sad thing is that this behavior of theirs is not about US.   It does not have our well being in mind.  It's about THEM.  Of course your Mom's afraid, and so are all of our friends who stay away when we're down for the count.  We remind them of their own frailty and mortality and they feel helpless in the face of it.  So either they abandon us or they try to pretend that nothing is wrong.   Rare is the person who knows what to say and how to behave--and these are usually folks who have been through something similar themselves.

I don't know if this will help at all, although knowing you're not alone is always a comfort.  There are just no magic solutions.   If your Mom is comfortable on the computer, maybe she could come here and read, or you could collect posts from various Hep sites and forward them to her.  
All I can suggest is that you keep speaking your truth and stating your needs as clearly as possible.   Hopefully one day soon her eyes and heart will open and true healing will begin between you.

[Laika]

What your sister may need most from you is the address to this forum and encouragement to sign on.  She can get support here from people who are or have actually experienced what she is going through.  Some of the people here are really great researchers with a wealth of studied info.

If she is too sick to investigate things on her own, or too depressed, if she doesn't have someone living with her who is attentive, hepC-knowledgeable and looking out for her...she needs this forum.  She can get lots of info here that will help her with medication side effects, help her understand her lab results...whatever she needs for information and support.  When you feel bad, you just can't be sociable with your family...but you can get on line and read what others are going through, how they're working with their problems, you can ask questions and find ways to make your treatment a little easier.

Laika

[layla]

I beleive there are support groups/forums for families of people with hepc. Maybe some one here will know more about that and will chime in. LL

[layla]

One of the most difficult things for some who have HCV and don't know how they got it is dealing with that question people always ask how did you get it. There are so many who actually don't know and since it's often assocaited with drug use many don't want to say they even have it. There are many ways to get HCV including at your dentist office, using someones razor or toothbrush and many other ways. It is embarassing to some of us at times because many people often associate HCV with HBV which is often sexually transmitted. It is all just a pain to deal with. It shouldn't matter but for many it's rough to deal with the stigma that comes with having this disease. Ann Landers once attributed it to sex in her column and in a short time  retracted her information after much mail I am sure, but the damage was done for some. Educate yourself and I also suggest Chevys recommendation
): "i love you. i've studied up on hep c & understand tx is difficult. i am sorry you have to go through this. i want to be here for you. what can i do. don't hesitate to call & know you're on my mind
LL

[honey1616]

Butterfly,,,you took a great step for your sister in finding this forum. Just doing the research,,,shows how much you love her.  Right now,,,sounds like she is doing the treatment which is hell at times.  Understanding is what she needs most and since you aren't in the same state,,,maybe just talking to her when she is up to it and encouraging her. There was many times while I was on treatment that I just didn't feel like talking to family members on the phone and I'm so thankful they didn't take offense to it.  I just wasn't myself and would call them back when feeling up to it. Takes alot of patience from those that aren't taking the meds. Best of Luck to you and your sister!

[sunspot]

The most tiring question I hear is asking how I got it. My answer is

[scruffy]

I would emphasize what Califia said. Your sister ,if treating, is going through hell. Support her or back off. Support is certainly preferable.

Rev-Google Actilon(a drug in trials). Ever heard of this one?
frank

[Califia]

This sounds like a perfect time to open up channels of communication with your sister.   The therapy she's on is very physically and emotionally demanding, and she would probably welcome acknowledgement of that.   But let her set the rules.  It's HER disease and her struggle, and sometimes unwanted attention is worse than none at all.  Just let her know that you are available and that you care.  Reading on the web as you're doing will give you a good idea of what she's going through.