Thanks

I posted my thanks as a resonse to my own question (duh).  I don't have many people I can be honest with and anonomity makes us (or me) brave.

Thanks. Lots of info I don't know much about, but more to research. Even though I've known about my diagnosis for 2 1/2 years, the first year was spent in denial. Then, I got the Hep A&B shots, and got serious so I could start tx, then when I was told I "rashed out" and couldn't continue, I bailed and went into depression. I try to fool everyone with acting like everything is ok, when it's not. I lie to myself and everyone else.
Even though I have known this for years, I am not knowledgeable and have not done much research.
If my lower counts are due to tissue death, should I have another liver biopsy (I am a female)? I hate this disease, and I hate myself for knowing I did it to myself! Most days, I am ok, but, I have been sick this week and feel so tired.

[can-do-man]

Hello not 4 gotn, Don't know if we've met but i go by candoman. Glad to meet you, and sometimes you have to over look my since of humor. Its all in fun and i mean no disrespect to anyone. Now you can't go around beating yourself up. I was in denial for 3 years before i decided to do something. Next, very few people really know for sure how they got this. So your hating yourself because you did this to yourself. How do you know you did this? Alot of people have not a clue. I'm a stage 4 grade 2 and treating. Plan on being around awhile yet. Don't know your stage but for the most part this is a slow moving virus. Plus alot of hope on new drugs a few years away. If depression is a problem then work on that first. Find you a hepatologist or a good GI thats treated Hcv. But please stop being so hard on yourself. People that have cancer didn't go asking for it. Same thing here. Don't much matter how we got it but whats the best thing to do about it. If you have little damage you might want to wait and see.

Wishing you only the best and quit this hating yourself. Or cando will open some thread and drive everyone crazy. Take care your gonna be just fine.

[ladybug52]

You are too hard on yourself.  I have beat myself up many times but it doesn't change anything.  We are what we are and our lives are shaped by our succeses, failures, and the mistakes we hve learned from in our past. It's part of what makes us the person we are and it's a continual growing process. we will continue to grom and learn and hopefully help others by our mistakes.  Good luck on your journey keep your head up high there are many people who support you and many that are worse off than you.

[ladybug52]

I would love to have another liver biosy, go for it if your doc will approve.  Knowledge is empowering.

[bobbyullc]

i feel that depends on what your last biopsy stage was??
if it was only 1 or 2 it probably has not changed much. 2 1/2 years is not a long time for hep c. my levels were off for 35 years and i had no ill effects at all.
you know i got this 37 years ago shooting heroin but do not hate myself or feel embarrased or ashamed. i was 20 y/o and am not like that now. one out of EVERY 50 people in the US have it. why run a guilt trip on yourself? we make wrong decisions. it is not a death sentance for most of us or a thing to feel ashamed of. it is treatable and the odds get better each year. smile1!!
bobby

[ladybug52]

I was dxed 12 years ago and was in denial because no one wanted to treat. My labs were all normal and I was symptom free. I didn't know about genotypes or treatment options, and I continued to take tylenol aleve and drink alcohol. Now I find out I did everything wrong but my liver is still not in really bad shape, grade 2 stage 1.  I feel guilty about that, too. I hope I can be as strong as others who are fighting this disease.

[bobbyullc]

as shakespere also said " amen brother".

guilt is self inflicted.

[sfbaygirl]

Sometimes I feel quilty about not starting sooner. I was dx 8 years ago and went through denial myself. Of course the tx then did not have the odds of SVR it does now. But at times I have to wonder if my stage 1, 5 years ago, has increased because of new ultrasound readings and symtoms (symptoms). I think the main thing I keep telling myself, is I am doing tx now, I am really brave to do it. It is as hard as I heard it was, but there is no stopping me now. I take comfort in the fact that while I didn't tx sooner, at least I am doing something about my condition now. I am sure there are many that won't do tx due to what they have heard about the sx.

You are doing something about this nasty virus now, beating yourself up only makes yourself feel worse. Turn this around and tell yourself how brave you are for doing something now.

Are you taking anti depressants? This may help you. Therapy can help a lot too.

[Jeffyboy]

You have been subjected to the world where which truth and beauty cannot last there is but one way to escape the way you feel and that is never give up hope there is something more for you. Whether we are the authors of our own demise isn't what matters most, it is the ones we have shared the best moments with. We take for granted our loved ones as we slip away from our mortal grip. Life is but a twinkling of the eye and we are but a speck of dust on the annuls of time. But there is something more to say that we would not have this passion for life if there were nothing to come. Shakespear was right when he wrote that it is, "the undiscovered country from whose bourne no traveler returns rather makes us bare those ills than to fly to others we know not of." and why would a creator give us eyes only to see death and miss the life we so eagerly want?
Why would we be suspended in a shell that cannot fight off a stupid little virus we don't want? Everyday we should awake and say, "this is the day I will start to live." rather than asking, "could this be the day that I will die?" It sounds like you have a passion in your heart so let it out scream and cry but don't let this ugly disease win, you are much stronger than that.
                             Jeffy

[sfbaygirl]

We didn't have the options back then, that we do now. I'm not going to tell you not to feel quilty, because I can't tell you how to feel. I can tell you that you need to tell yourself how you are so brave to do this tx. It is not easy and many don't ever get to tx when they know they have this virus. You are doing something NOW and you should be proud of yourself!

[Alady1620]

Hugs to you!  You have taken an important first step by acknowledging the illness and your depression.  I, too, spent a year in denial and I beat myself for my past behavior.  While I am sad for your diagnosis, I am glad to see another person pull themselves up and take a fresh look at their condition.  

You can handle anything life throws at you.  You are doing the right thing by beginning to educate yourself.  You will find the strength to go on and, posssibly, even treat again.  

We are here when you need to talk.

[Not 4 Gotn]

All of the advice is great.  I apologize for putting my self-pittying trantrum out there, but it is nice to know I am not alone.  A good night's sleep helps, and morning brings perception!  Yesterday was one of my bad days, I am not always like that.  Since I am new here, I appreciate the introduction. I only know I am stage 2, my GI doc or any others for that matter don't speak English, if you know what I mean, can't understand anything they tell me.  However, I am on Zoloft (just think what I would be like without it, ha)  Through the forum, I am learning what questions to ask, etc.  Hey, can you reply to several people at one time without posting a new question?  I would like to try to reply to all who responded.  I am crazy that way, I feel rude if I don't reply, a southern hospitality thing I learned growing up and am trying to teach my son. Anyway, my regards!  Hope your tx are going well, many good wishes to you!

[suzieq2]

Some of us know how we got it, some of us think we know how we got it, some of may have several ways we may have gotten it, some of us do not have a clue how we got it.DOES IT REALLY MATTER?The stress of trying to figure that out, or thr guilt we lay on ourselves because we did something stupid being young can only cause more harm to ourselves. Stress is the worst thing for interfering with the success of clearing this virus.Think of it this way. If you would have started treatment at an earlier time, the treatment was way behind the drugs we have available now,and you could hsve gone through treatment for nothing, as so many did.Drs. did not have the knowledge and drug companies are working very hard with wonderfull new drugs to fight this disease.I did 44 weeks if peginterferon and riba.It didn't work. I am 52 did everything right 1b, stage 2. Looking back I wish I would have waited for a better drug.I had time.I did not have the knowledge from research when i was diagnosed. It was fear guilt and so many different feelings.My advise is take a chill, Get a Hepatologist that you like.It may take getting more than one opinion.Get all the nessary testing for an accurate diagnosis.Do alot of your own research on this disease, so when you see your Drs. you have educated guestions to get answers from them. I do not believe that I would have treated this past year if i new then what I know now. I would have waited for the better drugs that are on the horizon.Like vx-950 which I am starting soon. Relax and get all the info on your stage of this disease so you can make the best disions for you.Manage your own illness along with your Dr. you choose.Please don't even waste your energy on how you got it. In my prayers. You will be fine

[Not 4 Gotn]

Appreciate the info.  I guess in a thread, everyone can actually see the comments, I am only used to e-mail.  Thanks for the welcome, and I hope your tx are going ok, I have heard it is very hard.  Since I was only on tx for 2 weeks, I didn't have a chance to feel the long term effects, but I was determined, until the doc took me off.  Am waiting for bigger and better things (hopefully).  Sometimes I think we are our own worst enemy (at least that's the case with me as you have read).  Am feeling  a bit better today, hope you are too!

[sfbaygirl]

I having been feeling good this week! It's been a rough road with every sx imaginable in my 22/48 weeks, but things seem better, at least with sx from Inf/Riba. Did you get a bad rash during your 2 weeks before? Is this why the dr. took you off tx?

[can-do-man]

Glad your feeling better today, no need to apologize every one of us here has them days. Had to laugh over the Doctors don't speak english. They can't write in english either. Must be the main thing their taught in medical school. Stage 2 gives you time to find the right Doctor and research.

I was getting worried thought you was gonna make me start a thread to drive everyone crazy.... Ah maybe one.

I'm a little teapot
Short and stout
Here is my handle
Here is my spout

When I get all steamed up
Hear me shout
"Tip me over
and pour me out.

You have a great day and come back often, this zoo never closes. :)

[sfbaygirl]

You can post a comment with several names in it. Then you can split up the comments in your post to the people you want to address. Sometimes people post a comment to each person. If it is going to be a long thread, sometimes the many comments in one post is a good idea. If you want though, you can just post them to one at a time. Hope this helps!!

Welcome!

[aiuta]

Hello.  Welcome to the Forum.  I am glad you are here.  Thank you for your honesty and openness.  I've shared some very personal stuff on this Forum and I fully agree that anonymity aids in that endeavor.  

You wrote:  "I hate this disease, and I hate myself for knowing I did it to myself!"  Like others have said, I encourage you to not blame so harshly and be so hard on yourself.  I have a feeling if you knew ALL the consequences of this illness and how much it and it's treatment could affect your life, you wouldn't have so readily shouted out to it: "Okay, here I am. Come and get me HCV."  Even if you injected yourself with a needle, I doubt you had ALL the necessary information about Hep C and it's consequences to make a fully informed decision when you did so; or maybe you were suffering from another illness--drug addiction--which at the time impaired your best judgement.  Some of us pay harder than others for our ignorance in this lifetime and others just have plain old bad luck.  

One thing that makes me really mad about this disease is the stigma that it carries.  Who cares if we got Hep C from a drug needle or an accidentally injected hospital needle?  The point is we have it and we are sick and deserve to be treated for our illness and not looked upon as if we "brought this upon ourselves" and are suffering because of our own poor choices.  Years before I ever knew what Hep C was, I was always attracted to the AIDS cause.  We are talking about human beings suffering, not "just some homosexual who deserves it anyway".  Any human being who suffers and struggles deserves attention and time. I don't care how they may have gotton their illness.  

Sorry about the soapbox (keep in mind I take Int/Riba which are known to intensify already existing feelings and maybe bring about some new ones).  I am just so sick of all of the prejudices I have encountered in these last 6 months since I was diagnosed with this illness.  I'm sad to say that some of it has even come from those in the medical profession.  I am sick of all the misinformation and judgement that exists about Hep C and I am sick of sometimes being treated like, and other times feeling like, a leper because I have this particular illness.  And frankly, I am sick of trying to come up with verbally clever ways to tell people I'm sick without saying Hep C and having to worry about others thinking I am a drug addict who, in their mind, "deserved" it anyways.  I've resorted to this masking of my illness only as a result of the way I was treated at the outset when I frankly told people I had Hep C.  I'm sorry I didn't get a more socially acceptable illness like cancer, but I'm still a human, I'm still suffering and I still deserve to be treated with respect and dignity, and not judged or looked upon as a leper because of how I may or may not have contracted this illness.  Not that I wish anyone pain or suffering, but I almost hope some more famous AND respected people would get Hep C (or come out of the closet about having it), who would also be willing to share about it openly, and change our society's view about it.  This is not only the silent disease because of how it progresses, our society nearly forces it to remain the silent disease because of how they often respond to our admission that we have it.  

I am glad you posted and again, welcome to the Forum.  You will see that here you are truly NOT 4 GOTN-- at least not by us.  We aren't perfect and we aren't doctors, but we care and we can identify with your struggles as a result of having Hep C.  I hope you will continue to feel safe enough to share your struggles and victories with us.  

All my best,

Aiuta

[Jeffyboy]

You have a passion for wanting everyone to understand this Disease and the pain it can cause. I knew I had it but was never oficially diagnosed until three or four years ago. People out there don't understand it because there is no education. There is still a mystery because not all of us got from a needle. It is still in its early stages because Like AIDS people put a label on it until it was no longer just the Homosexual population that contracted the desease. I think you will see a change in what everyone knows about the desease. Fear is False Evidence Appearing Real. Everyone in society dictates who you are by your appearance. That is why whoever judges another is decaying on the inside, and they don't want to accept the fact that whoever you are your blood is the same color. What ever we Fear will become what we see the most and with the same measure of judgement they use there will be that same measure they will recieve. As we undergo Tx we see what we have done and are making the correction, but those who Judge us for being sick I just pray that God will have mercy on them because they are not making the neccasary adjustments in there life intstead they are looking at what they haven't done in the past, and magnifying the sins of others.

As for choosing the more socially acceptable desease I agree with you and add this we are not living in the past nor are we paying for what we have done, no we are instead paving the way for those who will be treated in the future. This sight has helped me cope with what I am going through with the support that you and the others have provided through the information about this desease and it's Tx to let others know that they are not alone in their struggles. So we are the ones who should inform the medical profession to tell others who are diagnosed to come to this website to seek understanding. I was terribly stressed and at the end of my rope until I found this web site and now I know where there is a beginning there will eventually be an end to what I am going through. I still am not looking forward to that first injection nor the Sx, but I know if I have a question there is someone who caares enough to let me know what it is and how they dealt with it. I have heard it said, "Everyone is different." But as I look at these threads I see we are all the same in that it is the pain we are going through is only because we decided to stick around and make it easier for others to understand.
                                    Jeffy

[Morgaina]

My favorite saying "We hate what we fear and we fear what we dont understand" I read it somewher a long time ago but dont remember where. Drop in an join any pity party thats being thrown, this is a tough trip. Every day I'm so happy for the things I'm improving on (during tx, I was off the "improvement" thing, staying concious and feeding myself was good enough). I have messed up so many times in my life and still do (different types of messing up now). It's such a huge waste of time to practice hating ourselves for past mistakes (like picking wrong men, ooohhh booy!!!!) Our life is us, and where do we get to go now!?! peace to you.........Diane

[Not 4 Gotn]

You really hit on a lot of extremely important issues.  Especially about telling people we have HepC.  After 3 years, I am just now able to tell certain people.  My family has been very supportive, especially since I kicked the drug addiction (years ago).  However, everyone else is different.  Most, but not all, doctors seem to be VERY judgemental.  And, they ALL ask, how did you get it?  I am not one who lies very well (too bad for me), so I have received some harsh comments.  I used to cry, now I just get ANGRY!  Why isn't this illness talked about more.  It seems so many people have it, yet no one wants to talk about it.  And, yes, we feel like lepers (yet another type of discrimination, if there aren't enough).  Some people do treat me differently.  The company I have worked for  going on 5 years now may soon be closing.  It's a small company, and I was really ridiculed for "raising our insurance rates".  I only told them I have a chronic liver disease.  I wonder if I will be able to find another job.  I know it's not discussed during interviews, but once hired and you sign up for insurance, you have to list your illnesses.  I know you can't be "legally" fired for health reasons, but it does happen. One more thing to stress over, huh?  I really have to say, joining this forum has really released some pressures on me and I am glad to be a part of it.  I also think it would be great if doctors could tell HCV patients about this, I have learned more in the last week than in the many years I was first diagnosed.  At the least, I know more questions to ask and am receiving great info for myself.  Today I felt better than I have in months, relieving stress is GRRRREAT!  Good luck with tx to you both (and everyone)!  

[Jeffyboy]

I know how you feel that you were hurt by someone who had a choice but back when I recieved the virus it was thought not to be a big deal. I was not even given a blood test to diagnose the illness. The Doctors looked at the yellow in my eyes and said go home and drink lots of pottasium. That was when I was 25 it did not pose a problem until recently now I only wished that Gatorade would be the simple solution. Had I known what this desease could do to a person I would have never taken my first shot. To put it bluntly I have had my share of drugs and I have had everyone elses share as well I have taken Acid by the sheetsover 9,000 hits and I have taken over a thousand shots from intravienous injections. I have had sex with women who had numorous lovers, and I have no regrets in my life because the day I decided to quit was the day I realized that God is the answer. Used to be I would go get taosted when I had bad news like this Now it is the furthest thing from my mind as I have seen that I have grown and threats of death make me want to take a stand against this thing. I have seen a great deal of destruction in my life but there is nothing more destructive than the way Humans think and the way they use their words. I am 42 now and If I don't respond I will probably not live to see 45. However I am not afraid of death for I know who Jesus is and what He did for me, I will now face this monster desease and look it in the eyes as we are all doing. This monster will not snuff my will to live and it will not hold me back from enjoying the life I had and have now. So stick to your guns, and let your Family and friends know that what you need now is love not Judjment. We live by love because that is all that needs to be magnified instead of the mistakes we made in the past.
Jeffy

[lauraisstrongerthenHCV]

Hi I know exactly how you feel...guilty and ashamed and you blame yourself...I was a heroin addict when I was a teenager but then I got pregnant and got clean...I had my baby in 1998 and never looked back.  I was tested during and after my pregnancy and I didnt have HCV...About a little more then two years ago I started feeling tired and having joint and muscle pains so i went to the dr. to make a long story short I tested positive for the virus.

My family blamed it on the drugs and I kept telling them that it wasnt possible b/c I was tested.  After a while I started to believe them and began to blame myself.  Well about a month ago my dentist gave me an article about a dental office that I used to go to and it said that it was closed down b/c of unsterilized equipment and that the dentist were reusing single use items on multiple patients.  I read that and cried so hard b/c I knew that is where I had to have gotten it and my dentist agreed.  

I took that article home and read it to everyone and at the end I said "Although this dosent change the fact that I have HCV I bet it changes the way that you look at me"  MY point is...it dosent matter how you got it...it could be from a dentist or a needle or a tattoo...dont blame yourself it is unfortunate but not the end of the world... STOP BLAMING and START FIGHTING!!!!!!!

We are all in this together and non of us asked for it...your not alone!!!!

[aiuta]

I really appreciated your post.  I honestly hope I can borrow from your not-already-tainted outlook in regards to Hep C, how it is viewed by others, and how it is also our responsibility, as those who have it, to educate others.  I find your attitude both positive and  encouraging.  Thanks Jeff, Aiuta

[lauraisstrongerthenHCV]

thanks for your comment it made me smile,,,,

I, much like you am not afraid of death either...most drug addicts are not or they wouldnt be putting needles in their arms or doing the other crazy stuff we used to do....

the thing that I am scared of the most is dying before my two daughters are old enough to be on their own.  I feel guilty in that respect....like maybe I shouldnt have had kids if I wasnt going to be around to take care of them...at least that is how I used to think...now I think differently I mean I know I will be here for a while...and you will too!!!!! I really hope the treatment will work for you and I think it will...God works in amazing ways!!!

Sometimes I even feel like maybe this was a blessing in disguise because if I do beat it then it really has only helped me to appreciate each day and breath a whole lot more!!!!  It really helped me to slow down and not take things so seriously and not to take anything forgranted...It really opened my eyes up about the fact that LIFE IS VERY SHORT whether you die at 50 from hep c or you die at 80 from natural causes it is still short!!!!!

Hang in there and thanks for listening  BTW I am no longer worried about my judgemental family b/c I have my kids and my fiance and my friends and this site to help me get through this :)