Thank You for a place where we spouses can run to!

[joyce1]

I am so glad that this new forum has begun! My fiancee is a member he posts all the time but I often wondered where can we go? who can we talk to? People who are on Tx often don't understand that it is us who love them dearly, and sees how the Tx can change the person you love dramatically we are the ones who endure the pain of watching them go thru pure H*** even though they are the ones who have to live with and endure this dragon.
I go thru watching the man I love go thru the metamorphisis of Jekyll and Hyde I never know when it is a wrong time to open up my mouth until my head gets bitten off, till things are said that hurt deeply, till we get to the point that we don't speak at all. it's always said "well you just don't understand" well then help me understand what you're going thru and no matter what I will still be here slaying the dragon with you. there are times i think what the heck why am I still here taking the crap that the meds. help him dish out? sometimes i feel like I'm all alone trying to be there for him I work my a** off to take up the slack for him being sick from Tx, trying to keep it together so he doesn't see the pain in me watching him become the man I don't know any more.I never realized Tx meant no more whispered talks late at night in bed vocalizing our dreams, meaning no more being cuddled up on the couch together or holding each other in bed at night, instead it's me seeing the man I love go away being replaced with a man I don't know anymore.
I know it is they who endure the Tx, it is us the ones that love them that the Tx can destroy that love. I've put up a wall so I don't feel the pain of him being sick all the time with no energy just to talk to me without being so angry at me for what I never know sometimes I feel like waving the white flag before I enter the house if it comes back chewed up I don't wanna stay but I do and I go thru the cycle again and again with no one to talk to at least no one that really understands the pain I go thru watching him change right before my eyes. He just did shot # 10 last night and I will still continue to be there for the man I love no matter what this dragon dishes out.
Thank You from the bottom of my heart for a place to vent. For a place where we the spouses can go for support thru these he**ish times of Tx.
Joyce1

[todd]

Welcome Joyce1!

[IFTLH]

Hi Joyce,

Good to hear from you again.  I totally can relate to what you're saying, it can be very hard to not take things personally. I always say to myself it's not me, it's not me, it's not me!!! I do make the mistake of responding though. I don't know anyone who wouldn't.  

We are human, and yes we have our limits.  I also know that compassion is important too. All we can do is try our best.  I don't think we can do anymore than that!  Knowledge is powerful too, and we do have alot of information out there to help us if we want it.  This site will help I believe, at least in getting out what you're going through. I know when I write, I can release some of my anger or sadness or  To write in a journal or whatever you want to can help too.  Music is good too.  Have you ever heard of Josh Groban, young,very talented singer.  He sounds like Bocelli, but very beautiful.  I really love classical music sometimes, it just makes my heart soar!

Anyway, I'm glad you're writing here, and keep being strong and the person you are.  One day the dragon will be gone and all this will be a memory for you.

Take care Joyce, god bless
Lily

[Dude]

Hi Joyce, welcome in. It's wonderful that you at least try. I've heard of some who just cash in their chips and leave. It's a tragedy, and nobody in the medical profession or government seems to care enought to do something about it. It seems that way anyway. But they are trying to develop new meds that have little or no side effects now so hopefully they will be coming soon.

I've been through the past three years in this all by myself, my son lived with me until I lost my house since I was not able to hold a job... which was a first in my life. I've worked my entire life, since I was ten mowing lawns in the beginning every day. I never stopped. I felt it was the most important thing for me, to earn my own income. I love to work, and if I felt I could manage it now I would.

Being in this situation is like having a nightmare that you can never wake up from. Its the most harrowing experience I've ever been through, and it just keeps going on and on. Being on meds makes it even more impossible to take. Some people can handle it, oddly enough, but it seems that the majority have the same kind of experience, endless side effects, like low fever, muscle and joint pain, anemia, bloating, nausea, vomiting, diarrhea, irritated digestive tract, pain on upper right quadrant, insomnia, rage, dizziness, vision and hearing problems, and the list goes on.

Imagine having the flu, irritated bowels, vertigo, trouble sleeping, sleeping disorders, and all kinds of things... DAILY! If it were only for a couple of days or even weeks, we could muddle through, but it is seemingly endless, and all the while we have in the back of our mind that there is a DEADLY virus eating away at not only our liver, but attacking other organs. Just that alone would eventually tear a person down to a crumble heap of shattered emotion and incapacitating fear. It is so overwhelming it scares us every minute of every day, no matter how hard we try to shroud our difficulties or try to act like we're okay. We're not okay, at all. If you really dwell on all that, it should be no surprise at all that we are having a run for our lives but have no energy to continue, so we're so desperate that the despair beats us down hard and we sometimes think we just won't be able to get up no matter how hard we try.

Then we have to constantly be reminded that healthy folks cannot comprehend the depth of what we suffer, no matter how hard we try to explain it to them or how we can even draw them a picture, they just will never know. They may sometimes try, but they just can't know. One becomes completely isolated. It is the epitome of hell itself. It is hell. It often feels like we must already be dead and we're in Purgatory or something. I've often felt that it must be that I already died... this is what came afterwards. It is absolute horror at times, and I have come extremely close to calling it quits. The hardest part for me is knowing that the government is putting this low on their list of priorities, and I will undoubtedly die before they even begin to acknowledge it as an emergency epidemic on a grand scale, which is exactly what it has become in America alone.

It is terribly frightening, and we feel completely helpless in our struggle to survive. Many of us have lost everything, as is the case with me. I feel that the only thing I have left is my ability to write, and that is even compromised often by the unimaginable stresses I deal with on a daily basis. One of the things I am dealing with, as far as loved ones goes, is that now I am living with my 81 year old mother, who has absolutely no clue as to why I often snap, or why I am so irritable most of the time. That kills me to know that I am hurting her feelings, and she can't remember that I just went through a very long and arduous effort at trying to explain the problem to her just minutes before, and then I snap again and she takes it so personal, like I am shutting her off and pushing her away. I'm not.

I do want her to try harder to listen and not to be sarcastic or take things so personally, but it never turns out that way. The littlest things get under my skin and I'm like a land mine waiting to be stepped on. It is horrible for her and it is worse for me because I see the effect it has on her, and I can't keep myself in a placid level of communicating with her. I feel like a monster, and she just can't comprehend why I am this way... neither can I, especially since I stopped med's back in late December. This is killing me faster than anything, the feeling that I've lost my mind sometimes. I have gotten to where I just want to crawl in a hole and die. And this is what your husband must be going through.

I think that although you need a good cuddle session, allow him to have a lot of quiet time, and just let him find his way, try not to be too concerned with the inexplicable way he acts, but just let him know you're there for him if and when he needs you. If then you get together and talk and he begins to fall to pieces again, just tell him you love him and that you're going to let him rest, walk away and give him time again to filter out his difficulties. But don't crowd him in, don't show too much effort to get close, because he will get to where he needs to run away from you in order to have a quiet time to think all alone in his feelings of confused hopelessness. It won't be easy for you at all, this I can guarrantee. But if you can think of how you loved him all along, and how he once was toward you, loving you, then know too that one day he might just be able to be in that place again, and this is what both of you really want and need deep down inside. He feels helpless in his struggle, but he also needs a lot of time to heal in his own way. Too much pressure, even from the ones he loves, can be harmful, and even simple acts of concern can make him feel pressured and push him into that chaotic place where he just can't deal with it.

Welcome to madness. It can only get better once we get far away from the days of the med's. He needs you more than you know. Hang tough and be his love. It's really all you can do now.

God bless you and every spouse, child, parent, sibling, and friend who cares enough to keep reaching out for the victims sake. God bless the doctors who will really try to help, and d*mn the ones who are just treating us like cattle. God forgive those who ignore our plight. May they find themselves in our shoes one day, to see the life of a Hep C patient from our shoes. And God, please bring us a cure soon. I'm begging you God, on my knees.

[IFTLH]

 :)Joris,

My heart goes out to you and everyone of you who suffer on tx. I can't begin to imagine what it must be like to be on such a devil concocted cocktail of meds.  I really wonder sometimes if the doctors truly understand what it is doing to you. I also have to have faith that it will ultimately help slay the dragon.  There has to be a light at the end of this incredibly long dark tunnel, doesn't there?  I think that people pulling together and finding or strengthening their faith is what it is about also.  I will be forever changed since living with someone who has a horrible virus living inside him.  Life takes on a totally different meaning for us.  Laughing about something stupid is a blessed relief.  I work in a professional office where the topic may be as trivial as where one went for the weekend or where they are going on there next holiday.  I think, one day I will think about stuff like that, like where to go on holidays!!  But at the moment, my life, like many here, every day brings so many challenges and ups and downs that the focus is so completely different.  Good for them that can have fun and folly!!

In any event I just know that living is a hard thing some days and just enjoying the sunshine and a purring cat on my lap is heavenly.

Be strong and god bless you all!!
Lily

[joyce1]

Good morning to all!
Thanks for the words of wisdom and of support I know these next few months will be tough on my man Scooter I'm sure you've read his posts and I know it will be tough on me but together I hope to beat this dragon!
I guess I'm learning to shut my mouth    when need be but I 've always been a person to bite back once bitten. I don't claim to be the all knowing and will admit to you all that this is one thing I don't know anything about but I've been reading posts and damn I guess I'm not alone!
It's hard to watch someone you love go thru finding out that he has been tested postive for it, then watching the fear in his eyes I guess the mother hen in me wants to take him and hold him and make everything better even when I know it's impossible to do :-/.
I asked him as we were reading the replies to my post " Do I  really crowd you at times"? and the answer was quick and to the point so I guess now I'm learning a new way of dealing with him and his sides and to leave him room when he wants to get away and gets on the computer for hours and hours!
No we spouses don't know to the full extent of what those who have HEP and are on Tx go through but having this support group to lean on in hard times we can learn how to deal with the effects of the sides and know that it's not us, it's the Tx causing all this and move on (easier said than done   ) but all in all he knows that I'm here for him whenever he needs me or at least I hope he does and I have faith that "WE" not just "HE" will overcome this and the nightmare will be over. In 4 more weeks he will have his blood test to see if this Tx is working and I just pray that it is.
Thanks again to the one who set this forum up for us Partners~Spouses~ and Caregivers to go to in turbulent times! Bless you all!!
Joyce

[IFTLH]

Good-morning Joyce,

The hardest part is the waiting, isn't it? My hubby finds out in 3 weeks if this tx is working.  I can't even imagine what that might be like for him.  I only know it is hard for me waiting and hoping.  It feels like everything is riding on this magical date.  What if it isn't good news? what then?  I have to believe that for some it can take longer to rid of this demon depending on the viral load and stage and so on....
I mean what kind of lottery is this?? It's like 'YOU CAN GO AHEAD!'  ;Dand 'YOU CAN GET BACK TO THE END OF THE LINE'.  
We can't stop living though can we? we can have set backs but then we have to pick up our stuff and go on marching. Right?
My hubby is sleeping right now and I plan on letting him sleep until whenever. I am getting better at not pestering him at times.  I get agitated when he is so unsettled because I feel like I'm waiting for the hammer to come down.  I try to walk very carefully so I don't somehow upset him.  Even asking a question can set him off sometimes.  You know what that is like!  I try to tell my kids, 'not now, don't tell on your brother' I try to give them heads up.  They don't always listen!! can you believe this??
Anyway we are all in it because of LOVE, now isn't that a powerful word!! Doesn't feel like love sometimes, but heh! I am not an angel either.  Especially when pms strikes! I just hope my mouth stays closed.  I should glue it shut for a couple of days then I am safe
Anyway stay strong, and to all of you...WE LOVE YOU!!
KEEP ON FIGHTING! HOLD YOUR SWORDS HIGH!!
peace and coolness to you all! (our daughter always said that to us since she was 2, but with the hand gestures)
Lily

[sands4.0]

Good morning, (my morning), Weekends are the long shift for me. Any way, I sure could relate to alot of what was talked about this time. I keep my mouth shut, more often than not. There are times when mine (husband) is so critical of everything and everyone around him that it is best just to kept my mouth closed. I have blurted out some acid, type words in the past. I cant take them back.....SylviaI

[Rudy Jr]

rudyj53@It is great to have a place where partners can vent and share information.  I could relate to much of what is being talked about especially the biting the tongue part.  My partner has changed in personality, she is the same basically but yet she is different, like someone said the jeykl and hydye syndrome.  It can be hard at times and my heart goes out to her.  It is tough on her too, I know and I guess I feel like I should be the strong one and take care of things. But it is nice to know now that I have a place I can talk to too.  Thanks to all for being there.

[IFTLH]

Hi, and welcome Rudy Jr.

Yes, you are not alone, we are all here in this 'Alice in Wonderland' world living with a mad hatter some days.  We just have to accept it. I find the sooner the better because it's not going to go away no matter how much we wish it to.  All of our lives are turned upside down and will be for a long time. But it will get better. Our spouses are trying their best, even though we can't see that some days.  The best thing is not to get offended if your mate is not as amorous or sweet as they once were. Just take what good days you can and go from there.  I know that sounds harsh but that is their reality.   and yours I'm afraid.  
I just say to my spouse, "when you get better, you owe me big time" lol !!
Anyway welcome and pull up a chair anytime you need to talk. We may be all different but are the same.
Take care,
Lily

[dragoo15]

[Hi: I just wanted to ask everyone to be thinking about me this friday- I have my first shot- I am 69 years young- got mine with a b/trans. 40 years ago- according to my biopsy  I am a 3 in fib. my viral load is 1,500,000. my genotype is 1a- The doctor thinks if I can keep my platelets up I will be able to take the txs. I wouldn't know that anything was wrong had I not had an insurance exam 5 years ago. It is so scary to know that people are out there with this and don't know it- My husband and 4 children do not have the virus- Is that not wild! I am concerned about the sds. but I am really wanting to stop this before it goes any further-  thanks so much- Joandra quote author=IFTLH link=board=partners;num=1083411279;start=0#9 date=05/02/04 at 17:30:43]Hi, and welcome Rudy Jr.

Yes, you are not alone, we are all here in this 'Alice in Wonderland' world living with a mad hatter some days.  We just have to accept it. I find the sooner the better because it's not going to go away no matter how much we wish it to.  All of our lives are turned upside down and will be for a long time. But it will get better. Our spouses are trying their best, even though we can't see that some days.  The best thing is not to get offended if your mate is not as amorous or sweet as they once were. Just take what good days you can and go from there.  I know that sounds harsh but that is their reality.   and yours I'm afraid.  
I just say to my spouse, "when you get better, you owe me big time" lol !!
Anyway welcome and pull up a chair anytime you need to talk. We may be all different but are the same.
Take care,
Lily
[/quote]

[sands4.0]

Good morning everyone, I supose its best to start at the beginning, so it will be better understood.When Shawn first started his tx, he would go to the beach take his shot and stay in a motel for the rollercoaster ride. EVERYTHING in the beginning was done without me there. Then he had to stop for a few months. The first time arround it was really differant from this time. After the iodine injection, it seemed to slow things down for him. The meds before made it hard to deal with him. But after the iodine injection, it seemed to have made his breath easier to take for one. He got to start over again, this time he has been doing the injections on Thursday nights, since I work long hours on the weekends, by Monday we can have a hopeful and pleasant day. We have a hard time. like today, I get up to post and he is gone to help someone else. I had zero idea that he was going to be leaving. Any how today is what matters and yestersdays are gone forever, wish mine would learn that..... Sylvia

[scooter 1]

Hi and welcome Rudy Jr. and you too dragoo53,
I never realize the impact this place has had on me it has helped me temendously already, just a place to vent out our frustrations everyone here i have found had insight that they shared with me to better understand what this is doing to my scooter1 and to know that I'm not the only one going thru this and that if i needed to post on how or what's going on with me i can be sure that i will get some really good advice from someone who's been exactly where I am at and i take all replies and apply some of the ideas and they finally seem to be working out some of the problems we were having together.
I think when he reads my posts and replies, he's finally getting the idea on how I am feeling thru this whole thing and it seems it's easier to take when things are written down for someone to fully understand  everything you have been trying to say, to read it forces you to hear what the other person has to say so I am gonna keep on coming back here to a place where I feel I'm not talking to the wind. people here care  , it's a great place, I'm grateful for having this forum for us the ones who do not have it but yet we are the ones who take care of those who do, we try our best and if we are doing our bestest ( if that's even a word ) then that's all we can do, Continuous support for the ones we love, thru hell or high water we will be there no matter what!!  Thank You for taking me in and making me feel like I'm not going nutso dealing with a man who's undergoing Tx and that there are brighter sides and better days. thanks again guys and gals for the support.

[joyce1]

  sorry guys and gals i didn't know that my man was still logged in so i posted under his name......duh me!! been a long day !! good night

[IFTLH]

Hi all,
You know the worst days for us is about 2 days after the injection. It last for 2-3 days.  What I find really hard is the instant rage. Out of nowhere it can happen.  I feel myself tense up because I can sense it starting to build. There is nothing one can do to stop it!!

I actually say, "stop it" but it never helps. I always get angry after I say to myself that I won't.  It's really hard not to respond!! Do you find that too? Anyone?  :-/?

We can go for 2 days not talking, or just being angry.  I can't even feel comfortable getting to sleep because he justs keep on walking in and out of the bedroom because he is so anxious.  I find those days really really hard. I don't want to but it is so hard to keep quiet when you have someone so angry. 

I sure hope things even out with this tx.  God, what a horrible thing for our spouses to go through.  I don't know if I could take it!!

Anyway as the week goes by things seem to settle down a bit, and then friday!,yay! injection night again.  
I will be strong and just keep being here, that is my ultimate duty right now!!
Take care and god bless all of you!!
Lily