I am on week 33of peg-co,i feel that you are my family and i need your advice,i got married on feb 2000,we used to have great love story and our first year was wonderfull,my story is as follow i found out i have hepc on aug 2001,when i knew that i have it my life was turning down i didn't know what i do,i didn't tell my wife as i scare about her reaction ,at this time i don't have insurance,i start knock on every door to get medical care ,i go online every single day to find out about the hepc and the ways to get insurance,i start suffering sever deppresion and this when my problem start our relation me and my wife start change,she doesn't know why,she thought that i din't love her any more,eventually i got insurance and i start feel comfortable to tell my wife,she was very supportive of me but was very made as i didn't tell her before,any way suddenly i lost my job on oct 2002 and i was on unempolyment,i wasn't serioussly looking for a job as i felt it is a good time to start tx,i start tx on march 7 2003 the first 3 months it was miserable,i had very bad temper i scream on every one including my wife,she was very supportive at the beginng,i was very passive,i don't want to leave the the house i start taking paxcill i start feeling better i start changing myself to better,but still she want a devorce idon't want to make this decision at this time,whould you post your advice to my wife(tammy) as i will show it to her to stay next to me toward the end of tx then we can made this decision later showing her how badlly the tx is tought and how it affect the body and the soul.
I have not been on tx yet but have read innumerable post as to the emotional side effects, changes in personality ie: temper, depression, etc. They are very real and powerful. Not to mention the lethagy, desperation, fear and all the stuff that is caused directly by tx and the strain of what your going through. If your wife is leaving you only because you are not the man she married, "seemingly" not the same personality, I hope she knows that this is not you, this is you on a treatment that WILL end along with the side effects. I think the logical thing to do really if this is the case, the reason she is leaving, that she might consider giving you time to finish and return to your non tx self. It would be a terrible shame if a love was lost because someone did'nt understand the side effects of tx and that they would end. Do your best to combat the temper urges, alot is at stake and I wish you all the luck in the world and hope she understands and finds she still has a place in her heart for you. ~tigerdream~
From your perspective I can understand why you would want to wait and have a clear head to discuss your marriage - post TX. It doesn't sound like you have had an easy time with the psychological aspect or physical effects of the virus/TX. You dealt with the knowledge that you had the virus for a long time on your own - that alone could drive you nuts. You are also out of work - another big stresser. Your feelings are understandable and I am sure it takes all of your energy just to make it through each day. It amazes me how you all do it.
However, I can also understand how your wife feels. When I was told that I tested positive for the anti-virus, my husband was the first person (well...2nd...Mom always knows first) I told. Out of everything you said in your post, the fact that you kept that information from your wife was what stood out to me. We have to be responsible with things like this and not telling the woman you love that she herself could become infected wasn't a good choice. She should have been made aware and had the ability to choose her path. You basically took made the decision for her by not telling her. When I read that - I asked myself - "What else is he not telling her?" But, what's done is done. Maybe you could use better judgement in the future, perhaps that would help.
My opinion on that aside - have you guys tried a marriage counselor? I know how hard a blow this is to find out you are hepc positive - but you are almost done with your TX - and you need to focus your attention on your goal right now. Getting through TX should be #1 on your list because if you don't take care of that you can't take care of anything else.
I haven't started treatment yet, but because of the advanced stage of my liver damage, a few of the symptons are similar. My husband has been a saint, but things are starting to get to him also. However, he has read this forum, and has some idea what can be coming in the next few months.His comment, "When i said for better or worse", I meant it. He knows it's going to be bad!! but says he's here for the long run. The vows we took meant something, and w/ all the other things out there such as altheimers(sp) things could be on the other shoe someday and I'll need as much tolerance and loveing support if he gets that or other diseases. I hope this helps. God Bless. Joni
I'm on treatment and I feel up and down, up and down, up and down. I feel grouchy with myself at times and I just try and let it pass without opening my mouth. I try very, very hard not to let my emotions spew over too much to my husband. He is a constant support to me on good days and bad days. I absolutely wouldn't be able to make it if we were at each other's throats all the time. I am trying to always remember to 'bite my tongue' before anything I say that is not necessary when I feel like screaming my lungs because of this illness.
I am on tx, and I am a grouch! I take an antidepressant, but I still have a short temper at times, especially when I try to do too much. I am not able to work cuz of the brain fog, mental confusion, forgetfulness, and extreme weakness and dizziness. That bums me out, I have never been unemployed this long ever before and I feel worthless, like a mooch...but thats just me, my hubby of 4 years is very supportive and is neg for hepC. (I found out I had it in May or June 03) and told him right away. There are many ways to get it, dont feel ashamed. And its rare to pass it on to your monogamous partner (3%). Hopefully she will understand if you tell her it is one of the most stressful things a marriage can go through...poor health and mental changes are rough. But congratulations on being on tx, and keep up the fight!
My husband's main concern while on tx is that I have no liabido sp. Sex is very important to some while not to me while I'm on tx and have finally completed 48 weeks. I'm still on antidep which does effect our sex life somewhat, and my hubby did get through this treatment with me like a champ. My children and hubby should be honored in high regard. There are a lot of spouse support on line Prioirty heathcare has a good one, best to you.
I am on my second marriage, my first husband was an alcoholic that didn't think he had a problem and refused to seek help, which left me no choice but to leave, but that is another story. My second husband is in the same boat you all are, and at times is very hard to live with. I agree with the other person who asked "what else are you not telling her?" I was the first person my husband told as it affects not only him but all of us. All I can think is that you didn't know how and was worried of how she would react. What is the real reason you had for keeping it from her? My husband has learned that when his temper flares, he thinks again about what he was going to say before he opens his mouth. He tries very hard not to just quickly react when something he doesn't like comes his way. Maybe your wife doesn't know how to deal with your illness or doesn't want to accept that you are ill, or the fact that you kept it from her. I agree that you need counseling if she is open at all to staying together. Marriage is for good and bad and someday she may need you when she least expects it. Suggest a separation instead of a divorce, she may find that she wants to be with you once she is apart from you. Don't act too hastily, divorce is forever. Good luck to you and keep your chin up.
I feel faint that you went that long without telling your wife you were hcv pos. That is how I got hepc. From sexual contact. I would have the wife tested as soon as possible. And any children, if there are any.
Now on the tx stressors. Any time you stress about something, it takes away energy from you getting well. Your wife needs to realize this. Also that it is not you, but the tx that is making you a grouch or however it is going.
I went on tx in Nov of last year and lasted 6 weeks before my blood counts were down to nothing and had to stop tx. I ended up in the hospital two weeks after I stopped tx from stress of the holidays and a fight with my sister. Stayed there 3 days.
Right after that, my husband started tx and stayed on for 6 months. He's 2b, I'm 1a. I've had mine for 25 years, him for maybe 10. In other words, I got it from someone else a loong time ago.
But since he was on tx, he is a lot more tolorable of me since I have started tx this time. I am on week 10 of Pegasys-Copegus. It is hard for someone that has not gone thru this to understand how it makes you feel. Try to get her to understand. Show her this and maybe she will get an idea of the hell you are going through.
if you have any more trouble w/ insurance, go to janis7hepc.com. she has a link just for those problems. I know the Pegasys 1 is called pegassist, not sure of the peg-intron one, but they're there w/ phone numbers. Best of luck.. joni
Have your wife read this. Maybe it will put things in perspective for her.
An Open Letter To Those Without HCV...
Having Hepatitis C means that many things change. Just because you can't see the changes doesn't mean they aren't real.
Most people don't understand much about this disease or the disability the treatment causes and their effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand.....
These are the things that I would like you to understand about me before you judge me.
Please understand that HCV and its treatment doesn’t mean I'm not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker that ever. Please, don't say, "Oh, you're sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing those five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either.
Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything that I do.
Please understand that HCV and its treatment are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't scold me when I'm ill by saying, "But you did it before!” If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.
Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. HCV (and if on treatment) may cause a secondary/reactive depression but they are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated - if I could possibly do it that, I would.
Please understand that if I say I have to leave/sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something else more exciting. HCV does not forgive their victims easily.
Please understand that I can't spend all of my energy trying to get well from my chronic illness. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness is coming to the realization that you have to spend energy on having a life while you're sick/disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness and its treatment.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. It's because I have had many people suggest one at one point or another. At first I tried to research or try them, but then I realized that I was using up so much energy looking for answers that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, and if something worked we would know about it.
If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before, and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.
Please understand that getting better from an illness can be very slow. And getting better might not happen at all. People with Chronic HCV have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.
But most importantly, I need you to understand me.
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