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Avatar universal

It gets harder to except

My mother, the giver of the wonderful virus which is effecting my life right now, just got her results from Bx.Mild inflamation, everything looks good.It is amazing, that she has had this virus longer than me, and has less damage. That goes against all the studies and articles about the age at time of infection playing a role in fibrosis progression.They did not stage it for her, just told her mild inflamation.I think that is stage 1,or 2 at most, as I am moderate.She might not even treat now, as she has time to wait for new meds,and I'm told that I must.Just when I feel like I'm getting back on firm ground,I seem to be slipping again.Of course,we got in argument,as she feels my Dr's are lying to me, only telling me this because I have good insurance, and she has medicaid.I just don't understand,how everthing states that age at time of infection plays major role in rate of fibrosis, then something like this hits me in the face.She has had it longer than me,was an alcoholic most of my childhood,and did many other illegal drugs.Of course,she has been clean for over 10 years,and eaten really healthy,but we all thought she was chirrotic.Even my Dr told me she wasn't even sure that she was a candidate for Tx.They thought the lession was cancer.Do not take my comments the wrong way,as I am very happy for her,as I also know that at her age it would be harder on her and less SVR % than me at my age.I am still just having such a hard time excepting this ****! All day,I just have lost the point, and wonder if it is even worth the suffering.Sorry, don't know what else to say.
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Avatar universal
I happen to think that Snookman's mother's past behavior warrants criticism.  I'm not a moral relativist who thinks all behaviors and choices are equal.  I do judge, and it appears that you do, too, in expressing your critism of me.

However, on the other hand, I also believe in extending forgiveness to people who acknowledge their mistakes and then try to repair the damage their behavior created.  From what Snook says, his mother has done neither.  

Susan
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Avatar universal
as almost everyone has addressed your right to be angry and comfort you in that area...I will reiterate what Honey and I discussed yesterday...there IS sex(lovemaking better word) during tx...celibacy is not a documented sx for most.  
Reach out and hug someone...
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Avatar universal
I can see your anger at your mother and sympathize with it but it also sounds like that is done with and she has turned her life around and is now healthy. I think Britgirl has a point. I am sure this was not done intentionally to hurt you. Many (I think most though not all) of us here got HCV through some form of risky behavior in our youth. I am sure not one of us knew or even thought of a chance of getting a life threatening disease or even worse we could pass it on to our children. I can not even imagine the guilt one would feel having done this. Your mother may feel a terrible guilt and can't express it or maybe she senses your anger and can't deal with it. Her self destructive behavior at times may even have been part of these feelings. Knowing my child felt like that about me would just tear me up. People deal with these types of feelings in different ways. Maybe counseling would be a good idea for you to help you deal with this anger. I am sorry for you and your mother.

Tallblonde, I am surprise you would be so hard on this woman. You seem quit crtitical of where she got her HCV. None of us knew we could get this when it happened and this should not be an issue. This is exatly how we get stereotyped. I have seen you complain about this on this forum more than once yet you are judging this woman. I guess in your eyes I must not be COOL at all because I got this as a teen most likly from trying drugs. Correct me here if I am wrong but weren't you trying to get pregnant with HCV? (If I am wrong on that one I apologize).
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Avatar universal
ya the road is long with many a winding turn, lots of ups and downs unforseen obstacles and numerous kicks in the crunchers but you have to take solace in lessons you can learn along the way. Remember, when you get detours in life you can get peace by looking at the scenery onthe detour .........Ps email me @ derailhcvatmsndotcom Ihave something for you that may help
Daryl
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Avatar universal
I don't know....the only example that Brit Girl seemed to be giving that this woman is COOL is that she now eats well and doesn't abuse drugs and alcohol anymore.  I have much higher standards for people I label as COOL.

In fact, I think Snookman is the ultimate COOL DUDE for being a survivor under such horrendous circumstances.

Susan


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Avatar universal
I do understand where you are coming from and yes,,, I would be so angry!  You are worried about sex (LOL) but then on otherhand fighting for your life so,,,,First of all,,,I doubt very seriously if you will lose your sex drive so put that at bottom of list of concerns,  There will be days,,,you don't feel good and that will hinder that area but you will definitely make up on good days.  As far as your mom,,,,Have you talked to her about your anger?  Maybe this would help,,,to get it out! As far as her age of 53 and I know for a fact in that era of time late 60's and early 70's of being teens to 20's,,,That was the way things were for alot of people.  My husbands older sister had kids and everything had to be NATURAL!!  And of course as the kids got older,,,,They took more vitamins,,,health stuff!  In my opinion,,,it was obsessive but again,,,,alot of people were that way and thought that was the best.  They also felt by having your baby at home or in bathtub would bring a bonding closer.  I know this all hurts you dearly and I can see,,,,you are ashamed of your mom.  But please let go of some of the anger and forgive so you can heal yourself... You are in my prayers..
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Avatar universal
I sorry you have hostility towards me, because I'm angry at my mother. Yes, I love her, and always will. She is 53, on disability, doesn't work, and has hep c. Back in May, she was evicted by force, and thrown in the yard, actually beaten up by landlords. They where arrested. I let her move in with my wife and I. So with all this hate, and anger, I still took her in, as I would never let her on the streets with nowhere to turn. She has noone, and to young for gornment help.
I am mad, only because she has never apologized or just excepted responsibility. She thinks I got HCV from Jamacia, or someone else. All I want is for her to say, that she is sorry. Yes, she is a hippie, and I was born at home in a bath tub. Maybe this contributed to my getting the HCV,maybe if tested precautions could have been done, or the fact that I had almost no prenatal, only vegetables and vitamin supplementation.. Maybe being vegetarian did save her liver, but that is not why I am mad. There are plenty of reasons to be mad. I did not see her for years when I was little, she was always too drunk, or cusing at my father and I, my father had to have her arrested many times, hitting me, and stealing my inheretance ( my college funds my grandfather left me). But hep c is just one of the other great gifts she has enstowed upon me.Yet, she lives in my house right now, and I am helping her settle some of her own issues. All I really want is for her to except responsibility, and say she is sorry.
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Avatar universal
Oh...I should probably just keep my mouth shut...but I just don't get your point of view of this.  A former alcoholic, drug addict hippie is not a COOL person.  At least she wasn't being cool when she led that kind of lifestyle and caused her son to pay the price for her irresponsibility.

I'm not one for wallowing in self-pity too long, but I definitely think that Snookman has a right to be angry about the situation.

Just my two-cents.

Susan
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Avatar universal
Thank you, easier said than done is right. I was dealt a really unfair hand, and it has me nervously jittering in my chair. I can't help but be upset, and question. I do just need to suck this **** up. Never would I be able to express myself to anyone, like I exprees my feelings here. You all are great!! Noone truely understands, unless they have felt that heart breaking diagnosis come back from Dr, whether cancer, HCV, AIDS, etc.. I do not want to die, and I sure as hell do not want to suffer. Reading your posts, brought tears to my eyes, to see strangers, people I've never met, help me back up. I see why people have referred to others as extended family, as we are definately not strangers anymore.  I know that I'm at the bottom of a steep @ss mountain right now, looking up and wondering how and the hell I'll ever get over it, but some how I will. I am not throwing the towel in yet. Man, if my political opponents, (DonL) can lend me a hand, their might be a light at the end after all. People are not bad at heart, it is society and stereotypes that generate the ill nature. I do feel better this morning, not as upset, but now I'm asking what if, what if I loose my sex drive on tx!! I do have to just deal with this, it could definately be worse. Thank you
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Avatar universal
My freind (a nurse) went to pick her photos out of one of those booths and someone had placed an used needle there. She contracte g1 and spent the full term on tx She is a veryhig grade nurse amd has cleared, thank God. I say this because i admired her guts for going through what she did(alone)and like you sometimes she just went crazy with anger and the unfairness of it all. You have a great deal of passion for fairness in polotics etc and are righteously indignatious about your situation. It's good to be alive.
Sam
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Avatar universal
Hey you! I know how you must feel. My Mother doesn't have hep c. And I left her all the books to read....do you think she ever did????? Well....NOOOOOOOOOOOOOO!!!!!! And she always questions me. All through my first tx. and now that I have relapsed..she thinks I should be feeling so good!!!!! NOT!!! I still have horrible fatique and now I have fibromyalgia and tissue damage! She compares me to my uncle who has cancer....she said he never has any pain, doesn't take pain meds...Blah Blah Blah!

Don't get me wrong I LOVE MY MOTHER SO MUCH. But she drives me crazy!!!!! I don't even mention how I feel anymore and I don't talk about my disease to her. She doesn't think I need to be on morphine, but she saw how hard of a time I was having walking when I was at my parents last week. She even GAVE me a walking cane! But she has back trouble and is on methadose...and I don't question her! We go to the same pain center, but don't have the same doctor. I just don't understand her...my Dad is manic...bipolar, and he doesn't ever have a word but CARE about me. I really feel sorry for him!

I'll make ya a deal.....I'LL PRAY FOR YOU AND YOUR MOTHER, AND YOU PRAY FOR ME AND MY MOTHER....DEAL?????? DEAL!!!!!! I wish you the best and I pray things will get better. (For us both) I start tx again in Oct. oh LORD!!!!! She even questions my NEW hepatologist. I have invited her to go w/ me to the doctor....but she won't. Go figure!!!!! Luv ya bunches! Cindee
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Avatar universal
You say you are "outraged" at the fact that your mother has not got a worse liver than she has. It seems to me you are saying that she does not deserve to have got off so lightly, being not a victim, like you, but someone who brought about her own condition. This is dangerous stuff. This is why AIDS is not tackled prpoerly in some countries ("they're all drug users and homosexuals").
Your mother seems a pretty cool woman. She has drunk and done drugs and partied, but has now got clean and eats healthily. Isn't that something to celebrate rather than moan about? You call her an old hippy, but are you so sure that her diet has not helped her maintain a reasonably healthy liver? Is she someone who is less stressed out than you are? this helps our immune systems.
Reading your post, I am so happy I never had children. Maybe they would talk about me (the old hippy that i am) like you talk about your mother.
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Avatar universal
With this disease there is no sense questioning why...
It just doesn't make sense most times. But, I was thinking since your Mom has Medicaid, I would think it is her insurance that is stopping them from telling her that she is worse than what she really is, not your insurance telling you that your bx is worse.
Telling your Mom her bx was good and she doesn't need to treat right now saves the government ten's of thousand's of dollars.
Let's look at the positives here...
You're young, you have a supportive wife, great insurance, good Doc/Pa, you are a participating member of a wonderful site, and you are knowledgeable about Hep C.  
Everything will work out for you.
Try to relax (I know, easier said than done)
Enigma
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Avatar universal
You and I can argue political philosophy all we want, but not right now. I am really sorry you are in the fix you are in. You deserve to be angry, and stupidity and blindness to the truth cross all political and social bounds so I'm going to think of your mother as an individual who simply doesn't understand.

Be strong elsewhere, let it all out here, that's fine. All of us, even your devoted political opponent (me), are here for you and want you to succeed. Be good to yourself. You're in a situation you didn't ask for, didn't incur on your own. That sucks beyond words.

What it's really all about is how can you survive? Being strong is part of it, letting yourself feel is part of it, and seeing past it to where you want to be is also a part of it. You've got a wife you obviously care about. Your mother belongs to your past. Obviously you can't simply ignore her, but you're a man now and you can build the kind of life you want.

Sorry about all the unsolicited advice. Feel better my friend.
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Avatar universal
By the time you read this, I hope you've had a good night's sleep and are looking at the world with fresh eyes.  Everything you said in your last post makes complete sense, and you're certainly entitled to have a bad day...or two.

Whenever I begin asking "Why me?"....a little voice in my head always answers back "Why not me?"  (Damn that voice!).

Hey, it does stink to be only 27 and facing the kinds of challenges you're facing. But I had a classmate die at your age of cancer. And I've seen kids under the age of ten with terminal diseases. I read the obituaries from time to time and I'm stunned by the number of people my age or younger who have passed on.  Are any of these folks more deserving of their fate than I am?  I don't think so.

Self-pity is understandable, and probably inevitable, from time to time.  But Snookman, you've got to focus on all the incredible blessings in your life.  You have a disease that is treatable and survivable. This nightmare will probably be a distance memory long before you even turn thirty (That's when the real nightmares start, believe me.  And don't even get me started on what it's like to turn forty!).

My point is, you have an entire lifetime to look forward to.  A happy marriage, children, a stimulating career, grandchildren, a chance to make a difference in the world.  Try not to waste too much time focusing on the raw deal you've been dealt.  No one makes it through this life without some incredibly bad luck and some incredible blessings.  Concentrate on the latter.

I don't know if you're a country music fan, but Tim McGraw has a new song out called "Live Like You are Dying".  You might want to give it a listen.

Sending you a great big ((((HUG))))

Susan
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Avatar universal
Thank you, for the understanding. I am just so mad. I mean, I knew the severity of what I was dealing with, but this just hit me below the waist. I have been gearing up to retreat in August, and plan to still go ahead. I actually called my Dr to make sure she got me approved for pegysus, so I have something less to worry about. I have been really mentally strenghtning myself, but now, I'm just so damn confused and upset!! I am happy for my mom, but in the same breath, completely outraged!! She tried to blame my condition on my father the other day, for not having me treated back in 95'. As soon as she gets back in town, the war will begin, I know. She will swear that the Dr's are lying, and its my insurance they're after. She just doesn't believe anything I show her on the interenet, and thinks diet can cure us all. Can you tell a Hippie different??
I also look, at all my friends, and just wonder why me?? How can I not question, But where do I place the blame? I feel so sorry for my wife, as she is only 24, and doesn't deserve to have to worry about me.I feel like I let her down somehow, and can't stop thinking about the what if's?? What if, Tx doesn't work, what if I can't tolerate tx, what if I don't respond, what if?? I'm just killing myself thinking right now, so I apologize for being negative today, but man, I'm having a rough day. I am a very sarcastic and quiet, to myself kind of person. Do not show emotion easily,do not smile, always really serious, and do not tell people how I feel, except when it comes to politics,(DonL). That is truely why I am drawn here, cause I can speak freely without holding back, and not feel uncomfortable or ashamed. I still have not told any of my friends, only family about my hep c.I am scared of what they will think or how they will react.I do not want to be treated differently, as I am the same!! I have just been locked up trying to be strong and tell everyone I am fine, but inside I am just eating myself up. I have been acting like a real ******* trying to push the closest people around me away.Why punish everyone, when it is my problem. Again, I am sorry, and I just need to go to sleep, and relaxe. Best wishes to all, tomorrow is another day!!!
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Avatar universal
My friend, no doctor, <i>none</i>, can tell you with certainty that person A will progress rapidly, die young and person B will live to 100 with little damage.

What you read on this topic are generalizations and guesses. While amazing things have been learned with how things function in our body, it still remains a **** shoot. I just listened to some doc from UCLA talking about anabolic steroid use (CSPAN radio) and he had examples of weird cancers that some few users get, but there is no clue as to why them and not others... same, same with us.

Turn this around, focus and be joyful for your mother's good fortune. The "why me<i>s</i>" will eat you up!

I'm not a "power in positive thinking" kinda' guy, but you must take your positives when you can and celebrate them. God bless.   -Michael
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Avatar universal
I'm glad your Mom got a biopsy, and her results, just as I feel your pain and confusion. This is just my opinion, but from what I've seen and heard on this forum, it seems like children who are affected by their mother's seem to progress faster than average. Re: Travel mom and Amanda, and others. My prayers are w/ you.        Joni
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Avatar universal
I feel bad to hear such a heavy heart.   I think so many of us can feel your desperation and despair.  Life does bring us situations that are tough to endure.......many don't seem fair.  Our challenge is to come through the trials with more strength and appreciation for the important things.  It IS worth it to keep fighting and I suspect that's just what you'll do.  Keep the faith ~
ambush :)
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Avatar universal
It is hard to accept. The disease seems to progress differently for each of us. We all know people who smoke and drink and live to 90 while healthy runners drop dead at 45. So many variables and we are all unique. "Major role" means other factors can intrude.

I am glad for her that she is in good shape. I feel for you and your anger. Many of us had parents who let us down in various ways. Yours seems to have been a little more serious than others and you have a right to be angry. Still, for your own sake, if you can rise above your anger, accept that nothing is fair, and try to get past it, it may help you to be happier and more centered and better able to deal with your own health and life. Peace, my brother.
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Avatar universal
Wow, I can only imagine how angry you must feel about the circumstances that led to you getting this damn disease.  It's not fair and I don't blame you for being upset with the hand you've been dealt.  But life isn't fair and we somehow have to keep moving forward in spite of our righteous anger.  I found something on the internet around the time I was diagnosed and I pasted it on the wall in front of my computer.  I read it daily:

"When opportunity knocks on your door, it's not always a friendly or welcome sound.  Sometimes the opportunity is hidden in the sound, in the very frightening sound of a doctor telling you that you have a serious, perhaps life-threatening illness like hepatitis C.  There is a positive outcome, and there are ways to make these words a positive life experience."

Hang in there kiddo.  Things may be bad, but they could also be a whole lot worse.  Look for the opportunity in this experience and try to let go of the anger, if you can.  It's hard, I know.  I'm struggling with it too, but I'm determined not to drown in my own bitter bile.

Susan
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Avatar universal
I'm so glad that your moms biopsy results turned out so good and know that will be more of a relief for your family at this point.  I totally understand however,,,the way you must be feeling since you are so young and WHY do you have more damage?  It just doesn't make sense does it...There is no reason for this crazy disease! And it can be so very maddening!!  You will try tx again and now be more prepared with your dr for the complications that you had in past. You need to do it for you so you can continue on with your life.  I'm sorry,,,We are not always dealt the best hand but we will learn from that and go on! Please keep your chin up and continue to be strong! I read all your posts and you are such a fighter....I just know you are armed and ready and full force!!
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