Aa
Womens input, help
Hi all. After 7 days with no DSL in Ocala, Fl. and now it's ship horse's week, I've really missed this site! Have NO time and want to respond to so many. Hope all are well, especially merlino and Child24angel.
I need some women's input here (and the mens views wouldn't hurt, thank you).
I am 3rd shot in, 3rd week. So far, just can't whine much at all. Quite fatigued, but was from hep also, a few headaches from h*ll, few night sweats and, already, a bit brain foggy. Feel like I am ALWAYS stoned, but not the good stoned :) Just NEVER feel normal, good. (as you all know and as even before tx).
While I have EXCEPTIONAL support from my 3 sons, sister, friends, man of 8 years........ I can't seem to make him understand the HARM of me keeping up my normal pace (we are VERY active, social, business busy people) and while he always says "if your not up to it, don't do it"... He KNOWS if I KNOW it needs done, I GOTTA get it done! Tuesday was a 12 hour, non stop day, no nap, no break. Wed., with the 'social' dinner out, a 14 hour day. Sat. (shipping horse's on plane) will be a 20-24 hr. non-stop day! I am also getting very emotional, teary a lot, not Riba ragey (but also 49 probably starting menopause). I need to make him understand that even before this (stage 3 fibrosis) the fatigue was kicking my butt, and now it's worse and that I HAVE to take breaks, naps or it's going to hurt me, my tx, everything! (in a trial, NO 'rescue' drugs). If all goes to the curb, anemia, etc. I am taken off the drugs! He tries to understand and is a very good man, but as we know, if your not going thru it, you just DON'T really get it. ALSO...... sex..... love sex, need sex......just don't seem to want much right now and mainly from being so tired and every muscle in my body aching (as before tx)! And yep, getting that irritating skin , dry feeling there :{ Being a man..... ( no offense guys, love ya' :} he takes it as "I don't WANT him"....and that is NOT it! I wouldn't do Richard Gere (my man :} if he walked in some days, and that is BAD! A few mths. ago you ladies, men, posted to a similar post and it was great replies, so can you do it again? Please, for me :}
P.S. I 'only' have 24 weeks to do, type 2b. So not nearly as much a long haul as some of you (God Bless ya')
P.S.S. I keep getting 'friends invitation' from some on here, I always 'accept' and than it goes nowhere? What does that mean?
Thanks so much and sorry I haven't been here much to boost some of you up, onward.
Your ALL so great.
Love ya' all, Lauri
I need some women's input here (and the mens views wouldn't hurt, thank you).
I am 3rd shot in, 3rd week. So far, just can't whine much at all. Quite fatigued, but was from hep also, a few headaches from h*ll, few night sweats and, already, a bit brain foggy. Feel like I am ALWAYS stoned, but not the good stoned :) Just NEVER feel normal, good. (as you all know and as even before tx).
While I have EXCEPTIONAL support from my 3 sons, sister, friends, man of 8 years........ I can't seem to make him understand the HARM of me keeping up my normal pace (we are VERY active, social, business busy people) and while he always says "if your not up to it, don't do it"... He KNOWS if I KNOW it needs done, I GOTTA get it done! Tuesday was a 12 hour, non stop day, no nap, no break. Wed., with the 'social' dinner out, a 14 hour day. Sat. (shipping horse's on plane) will be a 20-24 hr. non-stop day! I am also getting very emotional, teary a lot, not Riba ragey (but also 49 probably starting menopause). I need to make him understand that even before this (stage 3 fibrosis) the fatigue was kicking my butt, and now it's worse and that I HAVE to take breaks, naps or it's going to hurt me, my tx, everything! (in a trial, NO 'rescue' drugs). If all goes to the curb, anemia, etc. I am taken off the drugs! He tries to understand and is a very good man, but as we know, if your not going thru it, you just DON'T really get it. ALSO...... sex..... love sex, need sex......just don't seem to want much right now and mainly from being so tired and every muscle in my body aching (as before tx)! And yep, getting that irritating skin , dry feeling there :{ Being a man..... ( no offense guys, love ya' :} he takes it as "I don't WANT him"....and that is NOT it! I wouldn't do Richard Gere (my man :} if he walked in some days, and that is BAD! A few mths. ago you ladies, men, posted to a similar post and it was great replies, so can you do it again? Please, for me :}
P.S. I 'only' have 24 weeks to do, type 2b. So not nearly as much a long haul as some of you (God Bless ya')
P.S.S. I keep getting 'friends invitation' from some on here, I always 'accept' and than it goes nowhere? What does that mean?
Thanks so much and sorry I haven't been here much to boost some of you up, onward.
Your ALL so great.
Love ya' all, Lauri
Everything that you are experiencing is completely normal... Sorry. But, this is usually how it is on treatment, at least part of the time. You will have some good days, don't give up hope in that. Keep up with your CBC because if that starts to get into the anemic range-it can be the explanation for some of it. Although, aren't you on a trial? Some trials don't allow rescue drugs-does the Albuferon trial allow them? If they do and you have the anemia-there's always the Procrit option. I never had that many social outings even off of treatment-but those that I did have-had to be modified. I worked at first-the first 3 times I treated, but after that-I couldn't handle it any more. Many people do find a way to make it through, like NYGirl! I'm so proud of her working her way through 72 weeks. I wish I could offer some great piece of wisdom---I am here if you need an ear to talk to-I believe I gave you my phone number. I would recommend keeping up your water drinking-that's very important. If possible scale back on your work hours and get some help during this time and you need to schedule time for rest...I'm not kidding on that! Your body is fighting a battle right now and it is the drugs against the Hep C and it does wipe you out energy wise-during the fight. One way to cope with that is to make sure that you get adequate rest. As far as the sex thing-it's always, always, always affected me there. Had many conflicts w/hubby over that one. I'm like, 'not into it...just do what you want and leave me alone so that I can go back to resting....' Isn't that just so nice of me??? Not! But, I feel like I couldn't change what I had no ability to change. When your body is not cooperating on that level-it's not like you can push a button(belly-button) and make it all of a sudden fireworks....if you get my drift. Everything seems to come right back to normal when the treatment stops and after all these treatments-he's finally getting that down now and has adjusted to those times of treatment. Trust me, he makes up for lost time on that arena, and your husband will have to be patient with you while your going through this period of time. After all, those vows say, "for better or worse - in sickness and in health' amd not 'I'll stick around until it's no longer fun for me and then, I'm outta here'. There's always cuddling w/hubby. You're a special person and you need to be treated specially right now. Take care, Susan
Totally going through the same things 8 mos into tx. My work is sales with lots of travel which is really rough - they are understanding but I am also driven b/c if I don't see clients, my future sales and income will suffer.
I have really learned recently that even if I pace during travel (rest, naps, decline some social functions in evenings), it still takes a BIG toll. Everything is different - sleep, comfort, food, ability to drink adequate H20 etc. even tho I really try. Usually, if I go, go, go for a week or so, then I have a BIG crash for 1-2 days. This also seems to go in cycles so even if I am taking it relatively easy for a while, I still crash every 3 weeks or so but this is more frequent when I am overdoing it.
How is any of this helpful to you? Well, hopefully if you know that others are struggling with same and have successfully made other choices (I cancelled two trips this month alone and the world is still revolving w/o me! ;-), that it might give you some strength to make some of those decisions also, and give you some support for explaining to family that this is a temporary but common result of the tx.
Sex? Forgettaboutit. I was a 2 year newlywed with cutie, cutie husband when I entered into tx. Sorry to say that we haven't had sex in months (I know, it's insane). Have no desire at all (can't even summon up a sexy thought), and even if I did, I would want to rest through it (LOL). Hubby is soooo understanding, and we are both waiting for the day when I am off this. In the meanwhile, what we are forced to do is plan for optimal opps - we're going away to cabin in mountains with hot tub. If that doesn't do the trick, aaaagh! Unfortunately for me, in past life a couple of cocktails REALLY did the trick and I hate it that that's out. I've found that a new environment, spa, massage and hot tub all really help so we're planning some weekend mini-vacas. Thinking of buying a hot tub!
Recommendations to you - drink more water than you think is humanly possible (I find that slugging lots early in the day is best). It really helped me with headaches and stomach upset. Also, I read the fine print on the Pegasys site that says that if headaches are a problem, eliminate aspartame. I have always been suspicious of aspartame (the whole health controversy) but drank a couple of diet drink, and a packet or two in my coffee daily anyway. I cut it out completely and guess what? Headaches almost gone - sometimes still have a mild one but no migraines in months and they were a HUGE problem.
Next, gently and *frequently* reinforce to hubby and family that things are different (even if you seem/look the same) and that it is *JUST TEMPORARY.* As you say, they are really not going through this (even if they are to some extent through you) and the JUST DON'T GET IT, so gentle reminders periodically are a big help. If we just persevere stoically w/o letting on, then it's easy for them to forget that things are REALLY not the same as usual. Plus some men need lots of reinforcement for things to sink in (sorry guys!). Do this not just when you are past the point of exhaustion but when you are snuggling in bed on Sunday morning, and remind him often that you need his help to get through this thing (they like that ;-).
Every time something comes up (work or social commitment), really consider if a) someone else can help you or handle it entirely, and b) will the world still revolve if you don't attend? It will and you will feel better for it! Believe me, it has taken me 6-7 months to figure this one out!
You have a great chance of success and it WILL be worth it. Good luck!
If anyone has any other tips on how to get that lovin feeling back, I am all ears! :-)
Robin
I have really learned recently that even if I pace during travel (rest, naps, decline some social functions in evenings), it still takes a BIG toll. Everything is different - sleep, comfort, food, ability to drink adequate H20 etc. even tho I really try. Usually, if I go, go, go for a week or so, then I have a BIG crash for 1-2 days. This also seems to go in cycles so even if I am taking it relatively easy for a while, I still crash every 3 weeks or so but this is more frequent when I am overdoing it.
How is any of this helpful to you? Well, hopefully if you know that others are struggling with same and have successfully made other choices (I cancelled two trips this month alone and the world is still revolving w/o me! ;-), that it might give you some strength to make some of those decisions also, and give you some support for explaining to family that this is a temporary but common result of the tx.
Sex? Forgettaboutit. I was a 2 year newlywed with cutie, cutie husband when I entered into tx. Sorry to say that we haven't had sex in months (I know, it's insane). Have no desire at all (can't even summon up a sexy thought), and even if I did, I would want to rest through it (LOL). Hubby is soooo understanding, and we are both waiting for the day when I am off this. In the meanwhile, what we are forced to do is plan for optimal opps - we're going away to cabin in mountains with hot tub. If that doesn't do the trick, aaaagh! Unfortunately for me, in past life a couple of cocktails REALLY did the trick and I hate it that that's out. I've found that a new environment, spa, massage and hot tub all really help so we're planning some weekend mini-vacas. Thinking of buying a hot tub!
Recommendations to you - drink more water than you think is humanly possible (I find that slugging lots early in the day is best). It really helped me with headaches and stomach upset. Also, I read the fine print on the Pegasys site that says that if headaches are a problem, eliminate aspartame. I have always been suspicious of aspartame (the whole health controversy) but drank a couple of diet drink, and a packet or two in my coffee daily anyway. I cut it out completely and guess what? Headaches almost gone - sometimes still have a mild one but no migraines in months and they were a HUGE problem.
Next, gently and *frequently* reinforce to hubby and family that things are different (even if you seem/look the same) and that it is *JUST TEMPORARY.* As you say, they are really not going through this (even if they are to some extent through you) and the JUST DON'T GET IT, so gentle reminders periodically are a big help. If we just persevere stoically w/o letting on, then it's easy for them to forget that things are REALLY not the same as usual. Plus some men need lots of reinforcement for things to sink in (sorry guys!). Do this not just when you are past the point of exhaustion but when you are snuggling in bed on Sunday morning, and remind him often that you need his help to get through this thing (they like that ;-).
Every time something comes up (work or social commitment), really consider if a) someone else can help you or handle it entirely, and b) will the world still revolve if you don't attend? It will and you will feel better for it! Believe me, it has taken me 6-7 months to figure this one out!
You have a great chance of success and it WILL be worth it. Good luck!
If anyone has any other tips on how to get that lovin feeling back, I am all ears! :-)
Robin
Lauri
Sorry your getting flattened so bad right now. For me, week three was around the time I got very anemic very fast (lost 6 points in just over a week) and believe me...I thought I was going to DIE. Had anyone tried to have sex with me well...Lorena Bobbitt would have come to mind and FAST!
It's very hard on our bodies and our minds to do treatment and BOTH of them have to do with the ability, need, desire - whatever it is - to have sex.
I know your husband isn't going to get it because well face it...it's not happening to HIM. The only advice I could give to you is to KEEP TALKING and keep the lines of communication open even MORE than they were before. Because he just can't understand that you are just going to really be THAT tired. As women (and you know how much stronger than men we really are) they expect us to be able to do everything AND look good AND smile AND take care of all their needs at the same time. When that 'support system' that they live for (our support) starts to need to take care of itself...well they seem to just LOSE IT! Waaa who's going to be here for MEEEE they cry! So just keep talking and try and get him to 'get it'.
You are going to HAVE to learn to cut back now. I used to NEVER EVER have a minute of ME time. Once I got ill with tx though - I decided that I had had enough pain and if I intended to make it through work I would have to make it ALL ABOUT ME for once!!!!!!!! I declared Saturday (the day after my shot) my DAY OF REST. I stayed in bed (which I'd NEVER done before except when I had the flu) each adn EVERY SINGLE SATURDAY of treatment. I put the remote in my hand...a box of mallomars or containner of ice cream by my side...a heating pad and an ice bag and flipped the channels just snoozing on and off ALL DAY.
Wow. That's like a mother/wifes DREAM isn't it? Just think you have a reason now to DECLARE THIS DAY FOR YOU TOO!
I'm telling you, not only physically but MENTALLY it was the best thing I ever did for myself. would have have been able to do 72 weeks without it.
Oh yes - if my son had a big game I'd go over to it...or something like that. But gone was the lady who got up to wash the kitchen floor and scrub the bathroom. FUGGIDABOWDIT!
If you don't 'LEARN' to put YOURSELF first here you are going to run into trouble so you HAVE TO! Hey, if it takes a bit of acting on your part at first to convince yourself well then you DO IT. Leave on your pjs and slippers and stay in and REST.
It DOES help your body and your MIND for the coming week.
Sorry this got so long but I just want you to know...it's a whole new world. It's a whole new concept. YOU NEED TO COME FIRST RIGHT NOW. YOU NNNNEEEED TO. so please...do!
Debby aka NYgirl
72 weeks - Stage 3 Grade 2 - Geno 1A/1B
Sorry your getting flattened so bad right now. For me, week three was around the time I got very anemic very fast (lost 6 points in just over a week) and believe me...I thought I was going to DIE. Had anyone tried to have sex with me well...Lorena Bobbitt would have come to mind and FAST!
It's very hard on our bodies and our minds to do treatment and BOTH of them have to do with the ability, need, desire - whatever it is - to have sex.
I know your husband isn't going to get it because well face it...it's not happening to HIM. The only advice I could give to you is to KEEP TALKING and keep the lines of communication open even MORE than they were before. Because he just can't understand that you are just going to really be THAT tired. As women (and you know how much stronger than men we really are) they expect us to be able to do everything AND look good AND smile AND take care of all their needs at the same time. When that 'support system' that they live for (our support) starts to need to take care of itself...well they seem to just LOSE IT! Waaa who's going to be here for MEEEE they cry! So just keep talking and try and get him to 'get it'.
You are going to HAVE to learn to cut back now. I used to NEVER EVER have a minute of ME time. Once I got ill with tx though - I decided that I had had enough pain and if I intended to make it through work I would have to make it ALL ABOUT ME for once!!!!!!!! I declared Saturday (the day after my shot) my DAY OF REST. I stayed in bed (which I'd NEVER done before except when I had the flu) each adn EVERY SINGLE SATURDAY of treatment. I put the remote in my hand...a box of mallomars or containner of ice cream by my side...a heating pad and an ice bag and flipped the channels just snoozing on and off ALL DAY.
Wow. That's like a mother/wifes DREAM isn't it? Just think you have a reason now to DECLARE THIS DAY FOR YOU TOO!
I'm telling you, not only physically but MENTALLY it was the best thing I ever did for myself. would have have been able to do 72 weeks without it.
Oh yes - if my son had a big game I'd go over to it...or something like that. But gone was the lady who got up to wash the kitchen floor and scrub the bathroom. FUGGIDABOWDIT!
If you don't 'LEARN' to put YOURSELF first here you are going to run into trouble so you HAVE TO! Hey, if it takes a bit of acting on your part at first to convince yourself well then you DO IT. Leave on your pjs and slippers and stay in and REST.
It DOES help your body and your MIND for the coming week.
Sorry this got so long but I just want you to know...it's a whole new world. It's a whole new concept. YOU NEED TO COME FIRST RIGHT NOW. YOU NNNNEEEED TO. so please...do!
Debby aka NYgirl
72 weeks - Stage 3 Grade 2 - Geno 1A/1B
Thank you, Thank you and going to let him read these post. ( Jeeezzz. even having to reply in a 'hurry' these days! That STOPS tonight!)
As much as they try, they just don't get how REALLY bad you feel, and as you said... a lot as you don't 'look' sick (though I feel I look pretty bad)!
It does seem to be really hitting me this 3rd week and I have GOT to learn to say NO, to many things, even this busy week. They will ALL have to work harder, cover my a** as I would for them.
My sons are the best, they do get it. think cause they know the 'normal' me so well. They MAKE me stop and rest. The man.....he's got some learning to do!! And only 3 weeks in!
Susan, yes, I am in that trial and that's why a bit extra worried as no rescue drugs so extra need to NOT need them :} And as you always do, thanks for offering your shoulder....we have got to meet for breakfast when your passing thru.
Nygirl...ALL good post :} I removed all the "Lorena" objects out of the room, anything sharp :}
I also TRY to make day after shot my "I AM STAYING IN BED DAY", as it seems if I don't, I really crash 2 days later?? BUT, have to get thru to them that this INCLUDES....DON'T call me, bother me, tell me about ANY problems that I will feel the need to solve! Maybe if I rent a room the next shot day, he'll get it :} LOVE the mountains, I need one of those trips and I soooooo miss my 'wine, swing off the chandeliers, awesome s*x nights" TOO !!
Robin, All good advice and he's reading yours too :) I have never take aspartame (health nut that smokes:} and always thought it was bad. You said......
"Every time something comes up (work or social commitment), really consider if a) someone else can help you or handle it entirely, and b) will the world still revolve if you don't attend? It will and you will feel better for it! Believe me, it has taken me 6-7 months to figure this one out! "
Very HUGE thing I have to learn to do. I am the 'problem solver', EVERYBODYS shoulder-tho love doing it- NOT NOW I guess! May do everyone some good to REALLY see how much easier I make thier life's , LOL
AND...... I have a hot tub that's broke! Perhaps when I spread these post around...it'll get fixed now :}
Child24angel..... I do click accept and thanks for explaining and thanks for yours :) I think about you very much, your son and you have touched my heart :{
All, must say also, it is hitting me this week but I know it could be much worse and truly feel much of that is because it's such a hectic, busy week for us and all your post have made me realize..... THIER all doing it.... I'm not even going to the airport tomorrow! THEY CAN handle it. That is HUGE, HUGE, HUGE for me.
On that note..... I am dragging off to do my short 4 hour day at another job I decreased my hours from 10 to 4-5 hours!
thanks all :), I may be changing many things here and sticking with it even after :)
WISHING you a feel good day. Lauri
As much as they try, they just don't get how REALLY bad you feel, and as you said... a lot as you don't 'look' sick (though I feel I look pretty bad)!
It does seem to be really hitting me this 3rd week and I have GOT to learn to say NO, to many things, even this busy week. They will ALL have to work harder, cover my a** as I would for them.
My sons are the best, they do get it. think cause they know the 'normal' me so well. They MAKE me stop and rest. The man.....he's got some learning to do!! And only 3 weeks in!
Susan, yes, I am in that trial and that's why a bit extra worried as no rescue drugs so extra need to NOT need them :} And as you always do, thanks for offering your shoulder....we have got to meet for breakfast when your passing thru.
Nygirl...ALL good post :} I removed all the "Lorena" objects out of the room, anything sharp :}
I also TRY to make day after shot my "I AM STAYING IN BED DAY", as it seems if I don't, I really crash 2 days later?? BUT, have to get thru to them that this INCLUDES....DON'T call me, bother me, tell me about ANY problems that I will feel the need to solve! Maybe if I rent a room the next shot day, he'll get it :} LOVE the mountains, I need one of those trips and I soooooo miss my 'wine, swing off the chandeliers, awesome s*x nights" TOO !!
Robin, All good advice and he's reading yours too :) I have never take aspartame (health nut that smokes:} and always thought it was bad. You said......
"Every time something comes up (work or social commitment), really consider if a) someone else can help you or handle it entirely, and b) will the world still revolve if you don't attend? It will and you will feel better for it! Believe me, it has taken me 6-7 months to figure this one out! "
Very HUGE thing I have to learn to do. I am the 'problem solver', EVERYBODYS shoulder-tho love doing it- NOT NOW I guess! May do everyone some good to REALLY see how much easier I make thier life's , LOL
AND...... I have a hot tub that's broke! Perhaps when I spread these post around...it'll get fixed now :}
Child24angel..... I do click accept and thanks for explaining and thanks for yours :) I think about you very much, your son and you have touched my heart :{
All, must say also, it is hitting me this week but I know it could be much worse and truly feel much of that is because it's such a hectic, busy week for us and all your post have made me realize..... THIER all doing it.... I'm not even going to the airport tomorrow! THEY CAN handle it. That is HUGE, HUGE, HUGE for me.
On that note..... I am dragging off to do my short 4 hour day at another job I decreased my hours from 10 to 4-5 hours!
thanks all :), I may be changing many things here and sticking with it even after :)
WISHING you a feel good day. Lauri
You know how much we save in 'Therapy' cost on this website :} ???
A ton, I am sure.
A ton, I am sure.
Drink more water to get rid of those headaches. Life returns sometime after tx is finished. You are so fortunate to only have to go through 24 weeks. I worked 9 hours a day for 33 weeks and I'm 65 years old. My desk job was easy. I got every other Fri. off. Then I retired. I finished tx 4 weeks ago and I can't tell you how much better I feel now. Of course the 8 massages I have had since then and 8 infared sauna baths have helped a lot too. You must put yourself and your treatment first. If you do it right you will only have to do it once. Loads of marvelous friends on this forum. I never had a sexual thought. I think the virus ate my labido, of course I've been post menopausal for quite some time and I live alone.
One more thought, that I thought of after the fact. If you do decide to get your hot tub fixed and do a soaking, make sure you moisturize really really well. You are on Ribavirin, too, right? Our skin has a tendency to get dry and itchy so, a long soaking-though it may feel a lot better to our muscles and bones-requires a good moisturizing. NYGirl recommends Gold Bond and some have found Eucerin cream to be most effective.
Susan
Susan
Wow, you sound like my clone. Sunday will be my 3rd shot. Seems to be getting worse daily with headaches and fatigue. I have never taken time for me. I have so many commitments and I don't work full time. I do a lot of volunteer work that no one else seems to want to do. Not to mention that the house work would never get done. I don't think my husband understands just yet. I was just talking to a girlfriend today about changing my lifestyle and slowing down and start thinking about me. The symptoms you are having are identical to mine. I would love to stay in bed on Monday but I have a commitment that day. And on Tuesday. Wednesday I could rest. Ha. I look forward to more posts from you to see how you are doing. I am not taking any other drugs with this treatment and hope I don't have to. Talk again soon.
Hi Ladies.
GrandmaA, I had slacked on the water a few days.And knowing how blessed I am in type 2 keeps me 'up', specially reading here. All my 'jobs' are very physical work, so simply have to let it go some. Will hurt my pocket some, but I am okay and in a trial so little cost there. The NO appetite for sex (or food, lol) sucks tho. On the massages and infared saunas, I also plan to do a lot of 'cleansing' my body when done, but what is infared sauna's??
Susan, I'd bought the green bottle Gold bond right away, before tx from hearing NYgirl on it. Have coated down every night and no rash. (now, in the past, him rubbing me down, that 'menthol' all over feeling WOULD have resulted in ......ya' know :} now it's "oh your so good to me" and roll over!. poor guy!} I know he will 'get it' at any chance I can muster for lacking so and not whining much. (once he's figured out I DO love him, just not 'it', right now "}
Jacksonp..........hi there. What type, tx are you doing? sounds like this is hitting you like me, okay at 1st than BAM. (read my post to tedinoregon "Oct 2007 Tx" as for what I KNOW I did 'wrong'.) Thought "oh, this isn't too bad" and just broke myself down. It was just a few days between feeling a bit rough to "OMIGOD' , this sucks! I think realizing I CAN'T keep up my pace ( that I love and HATE laying around) and I simply CAN'T do all I do is what caused my teary, crying for 2 days melt.
I hope your husband is understanding and I have had mine (man of several years, not married) read some of these post, than after my melt, talk the other night, he get's it better now. He has been wonderful already, all in our life just need to know how we REALLY feel and even the statements of others here as they say it so well, so they can better understand how to deal with and help us....as we would for them. I do have a great support system, 3 sons I can't praise enough right now, a sister, friends, people at work. One of my customers at 1 job have a girl h*ll the other day.."WHY is Lauri here? She should be home and WHY aren't YOU working for her" and so on. They love me :}
Also, I do 3 'jobs', 2 self emp. and 1 other. This week made me hand a LOT over to others. ( I can NOT get taken out of/off this trial either!) I am a bit 'anal' on doing things right, I have to let that go awhile! I also am always 'saving' an animal or person! Point is, WE also have to let some of that go for now too.As you do a lot of volunteering, can you hand that over to ANYONE? And since you do that, maybe others can volunteer for YOU right now!?
Anyhow, we'll have to keep up on each other. Do read the post to tedinoregon (long tho, I babble!) but it says a lot about what NOT to do NOW.
Have a good day. talk again, Lauri
GrandmaA, I had slacked on the water a few days.And knowing how blessed I am in type 2 keeps me 'up', specially reading here. All my 'jobs' are very physical work, so simply have to let it go some. Will hurt my pocket some, but I am okay and in a trial so little cost there. The NO appetite for sex (or food, lol) sucks tho. On the massages and infared saunas, I also plan to do a lot of 'cleansing' my body when done, but what is infared sauna's??
Susan, I'd bought the green bottle Gold bond right away, before tx from hearing NYgirl on it. Have coated down every night and no rash. (now, in the past, him rubbing me down, that 'menthol' all over feeling WOULD have resulted in ......ya' know :} now it's "oh your so good to me" and roll over!. poor guy!} I know he will 'get it' at any chance I can muster for lacking so and not whining much. (once he's figured out I DO love him, just not 'it', right now "}
Jacksonp..........hi there. What type, tx are you doing? sounds like this is hitting you like me, okay at 1st than BAM. (read my post to tedinoregon "Oct 2007 Tx" as for what I KNOW I did 'wrong'.) Thought "oh, this isn't too bad" and just broke myself down. It was just a few days between feeling a bit rough to "OMIGOD' , this sucks! I think realizing I CAN'T keep up my pace ( that I love and HATE laying around) and I simply CAN'T do all I do is what caused my teary, crying for 2 days melt.
I hope your husband is understanding and I have had mine (man of several years, not married) read some of these post, than after my melt, talk the other night, he get's it better now. He has been wonderful already, all in our life just need to know how we REALLY feel and even the statements of others here as they say it so well, so they can better understand how to deal with and help us....as we would for them. I do have a great support system, 3 sons I can't praise enough right now, a sister, friends, people at work. One of my customers at 1 job have a girl h*ll the other day.."WHY is Lauri here? She should be home and WHY aren't YOU working for her" and so on. They love me :}
Also, I do 3 'jobs', 2 self emp. and 1 other. This week made me hand a LOT over to others. ( I can NOT get taken out of/off this trial either!) I am a bit 'anal' on doing things right, I have to let that go awhile! I also am always 'saving' an animal or person! Point is, WE also have to let some of that go for now too.As you do a lot of volunteering, can you hand that over to ANYONE? And since you do that, maybe others can volunteer for YOU right now!?
Anyhow, we'll have to keep up on each other. Do read the post to tedinoregon (long tho, I babble!) but it says a lot about what NOT to do NOW.
Have a good day. talk again, Lauri
D*m......another LONG post above up there. I really do babble!
Extra Note: I am sure you have read here about drinking LOTS of water. A must, but be sure it's distilled or purified water.
Also, I started at tx 2 things....biotin (learned here of course) and B complex. I got the sublingual ones at a health food store. Biotin supposed to help with skin/hair loss and B complex with energy, depression, several things. As a few vitamins we aren't supposed to do lot of, A, Iron.....kind of hard to go with a multi vit.
Lauri
Extra Note: I am sure you have read here about drinking LOTS of water. A must, but be sure it's distilled or purified water.
Also, I started at tx 2 things....biotin (learned here of course) and B complex. I got the sublingual ones at a health food store. Biotin supposed to help with skin/hair loss and B complex with energy, depression, several things. As a few vitamins we aren't supposed to do lot of, A, Iron.....kind of hard to go with a multi vit.
Lauri
These supermwoman stories really have humbled me.
i can barely function and I live with a flock of birds and when they get on my nerves I put them in their cage and throw a blanket over it.!
Seriously, when I moved in May (coz of financial toll of tx) I didn't give my new phone number or email addy to more than a couple of people.
I have the relative luxury of NOT getting over-extended coz I've become a hermitess and no one can contact me. My choice.
it's hard enough to justify going through this cr*ap and all the awful SX to myself without having to explain it to anyone else.
Heck, I can't understand it half the time and I'm the one experiencing it!
I get mad at myslef!
LL, you do have to slow down or your body is gonna take revenge on you. It's not your imagination . . . the sx are rough for most of us. I'm at week 44 of 72 and while most of last week was relatively decent. almost normal, soon as I did the peg and neup I crashed again. Haven't been out of the house in 2 days.
wyn
i can barely function and I live with a flock of birds and when they get on my nerves I put them in their cage and throw a blanket over it.!
Seriously, when I moved in May (coz of financial toll of tx) I didn't give my new phone number or email addy to more than a couple of people.
I have the relative luxury of NOT getting over-extended coz I've become a hermitess and no one can contact me. My choice.
it's hard enough to justify going through this cr*ap and all the awful SX to myself without having to explain it to anyone else.
Heck, I can't understand it half the time and I'm the one experiencing it!
I get mad at myslef!
LL, you do have to slow down or your body is gonna take revenge on you. It's not your imagination . . . the sx are rough for most of us. I'm at week 44 of 72 and while most of last week was relatively decent. almost normal, soon as I did the peg and neup I crashed again. Haven't been out of the house in 2 days.
wyn
Thank you Wyntre, I know I do have to slow down....my superwoman days are for sure on hold! (can I be superhep GIRL?) Very much understand the going into seclusion and find myself looking at caller ID a lot more now....and putting the phone down!
Susan and wyntre..... I am also becoming a bit more of a hermitess! I was very social before even the sypmtoms of hep started 3 or so yrs. ago. Love people and all jobs are with lots of people!
Finding myself staying home, tho actually enjoying it at times, 80% of the time now and now on tx...no choice. Of course the immediate stopping of all alcohol upon dx. also changed much of the going out weekends. Find I don't have nearly as much fun dealing with drunk people when I am sober.LOL! Do NOT feel like the "oh Hi, how have you been" smiling routine! More like "ahhh shut up, don't want to hear your HEALTHY arse whine' feeling going on. LOL!
And I am normally such a compassionate woman:}
Lauri
Susan and wyntre..... I am also becoming a bit more of a hermitess! I was very social before even the sypmtoms of hep started 3 or so yrs. ago. Love people and all jobs are with lots of people!
Finding myself staying home, tho actually enjoying it at times, 80% of the time now and now on tx...no choice. Of course the immediate stopping of all alcohol upon dx. also changed much of the going out weekends. Find I don't have nearly as much fun dealing with drunk people when I am sober.LOL! Do NOT feel like the "oh Hi, how have you been" smiling routine! More like "ahhh shut up, don't want to hear your HEALTHY arse whine' feeling going on. LOL!
And I am normally such a compassionate woman:}
Lauri
Lauri - Just chill when you need to...
Your body won't let you do more than you can. Period, end of statement... And who knows --- MAYBE you will be able to keep all those appointments.
Keep up on your water - your hydration and your vitamins... Eat healthy - exercise where you can...
But --- if you CAN do it --- GO --- if you can't --- well do what you can.
Honesty is your best policy... Tell everyone that you feel comfortable tellling that --- TENATIVELY --- sure thing! You'll go... But they need to know that you might have to bag out later... or 5 minutes before... And hopefully they will understand.
Let them know you're going through chemotherapy - and tell them --- one minute, you're fine... the next, you're not.
Let them know you love them - etc. But there might *MIGHT* be days you won't be able to make it no matter how much you really want to.
Heck tho --- if you can manage it -- go for it.
Who says everyone has to feel awful?
Hmm?
Good Luck and have so very much fun while you can --- and if you do go down --- remember that there IS an up.
Hugs,
Meki
Your body won't let you do more than you can. Period, end of statement... And who knows --- MAYBE you will be able to keep all those appointments.
Keep up on your water - your hydration and your vitamins... Eat healthy - exercise where you can...
But --- if you CAN do it --- GO --- if you can't --- well do what you can.
Honesty is your best policy... Tell everyone that you feel comfortable tellling that --- TENATIVELY --- sure thing! You'll go... But they need to know that you might have to bag out later... or 5 minutes before... And hopefully they will understand.
Let them know you're going through chemotherapy - and tell them --- one minute, you're fine... the next, you're not.
Let them know you love them - etc. But there might *MIGHT* be days you won't be able to make it no matter how much you really want to.
Heck tho --- if you can manage it -- go for it.
Who says everyone has to feel awful?
Hmm?
Good Luck and have so very much fun while you can --- and if you do go down --- remember that there IS an up.
Hugs,
Meki
I haven't done TX. I have experienced sexual abstinence at other times in my 18 year marriage due to childbirth, the wife being in school, or during a period at the end of that marriage. There's kind of a joke, probably no laughing matter for women, about a medical phenomena often simply refered to as "SRD" (which stands for Semen Retention Dementia) : ). I'm making a small joke here but in practice I think men may go a little wonky (yeah, there's another medical term ; )) during periods of abstinence particularly if it is a loved one right in front of them on a daily basis.
I sometimes worry that children may end up interpreting a parents behavior during treatment as how the person on treatment really feels. It might be easy to interpret riba rage with honest anger at a person.... or to confuse fatigue with disinterest. For women to feel a certain way during treatment is predictable and understandable. I just think that some level of communication is required so that the issue is very clear to the man. They need to understand it in their heart as well as in their mind.
My final bit as a man would be to promote the idea that if ya can throw the dog a bone every now and then you may end up dealing with the MAN more frequently and not his "inner child" needing to be held. : )
In computerese...... you may not feel like your platform is capable of running at top speed a full graphics package and high bit sound card. However......many hubbies may be content with basic "maintenence mode" capabilities or help in deleting their unneeded temporary files. Periodic maintenence may be a chore but in the big picture it may keep things running smoother than deferred maintence.
Men and women understand things in different ways. A man may feel like; "Oops; I forgot to take out the trash". That same inaction may be understood to the woman as; "if he cared at all about me he would take out the trash without being asked". On some level men connect womens caring with some personal (and yes, sexual) contact. We know it aint true intellectually but we don't always "understand" things on a purely intellectual basis. (and how well you probably already understand that. ; ))
If it's any comfort I hear many dudes on TX also feel as you do too......
best,
Willy
By the way....I clicked on that friend thing just to see what it was and "boom"; it got sent off. I think the reason for it is so if you wish to PM a person you have them stored in your '"friend folder" instead of going and finding a thread with a profile to click on. I agree it seems to have some sort of onus other than as a clerical function.
I sometimes worry that children may end up interpreting a parents behavior during treatment as how the person on treatment really feels. It might be easy to interpret riba rage with honest anger at a person.... or to confuse fatigue with disinterest. For women to feel a certain way during treatment is predictable and understandable. I just think that some level of communication is required so that the issue is very clear to the man. They need to understand it in their heart as well as in their mind.
My final bit as a man would be to promote the idea that if ya can throw the dog a bone every now and then you may end up dealing with the MAN more frequently and not his "inner child" needing to be held. : )
In computerese...... you may not feel like your platform is capable of running at top speed a full graphics package and high bit sound card. However......many hubbies may be content with basic "maintenence mode" capabilities or help in deleting their unneeded temporary files. Periodic maintenence may be a chore but in the big picture it may keep things running smoother than deferred maintence.
Men and women understand things in different ways. A man may feel like; "Oops; I forgot to take out the trash". That same inaction may be understood to the woman as; "if he cared at all about me he would take out the trash without being asked". On some level men connect womens caring with some personal (and yes, sexual) contact. We know it aint true intellectually but we don't always "understand" things on a purely intellectual basis. (and how well you probably already understand that. ; ))
If it's any comfort I hear many dudes on TX also feel as you do too......
best,
Willy
By the way....I clicked on that friend thing just to see what it was and "boom"; it got sent off. I think the reason for it is so if you wish to PM a person you have them stored in your '"friend folder" instead of going and finding a thread with a profile to click on. I agree it seems to have some sort of onus other than as a clerical function.
#$$##$$#@%&!!!!!!!
Don't know WHY that posted 3 times.
Can ya tell by my response just how short my fuse is!!!!
Week 44 and it's getting worse. Can't even stand the flock anymore. If I have to have more than a 2 minute conversation with anyone I get anxiety attacks. I went off prozac 2 or 3months ago coz it was turning me into a zombie but, i dunno . . .
No, I do know - i ain't going back on that.
7 more months of seclusion. Sometimes I wonder if I'll ever WANT to rejoin 'civilization'.
TG I'm not married or involved as I'm sure divorce or separation would be in the cards.
wyntre
Don't know WHY that posted 3 times.
Can ya tell by my response just how short my fuse is!!!!
Week 44 and it's getting worse. Can't even stand the flock anymore. If I have to have more than a 2 minute conversation with anyone I get anxiety attacks. I went off prozac 2 or 3months ago coz it was turning me into a zombie but, i dunno . . .
No, I do know - i ain't going back on that.
7 more months of seclusion. Sometimes I wonder if I'll ever WANT to rejoin 'civilization'.
TG I'm not married or involved as I'm sure divorce or separation would be in the cards.
wyntre
I started on Paxil at my 6th wk of tx. I too understand the hermitess mentality. An acqauintance needed a place to crash for the past mo. Thank God that person left this am. I pretty much locked myself in my bedroom...now I feel I can breathe easier. I don't feel like a zombie..but the low dose of this a/d has helped take some of the edge off...jus' thought it may help you....
About 3 mos. into tx, my cycle just stopped. Libido feels like a thing of the past...ah well. Before tx due to fibroids, my period was SUPER heavy and prolonged...i'm glad i don't have to deal with that as well. Though at 44, I due have concerns about early menopause....
I too am single and grateful for it, though sometimes I hear lovely stories about supportive husbands...and then i wanna throw a pity party!
About 3 mos. into tx, my cycle just stopped. Libido feels like a thing of the past...ah well. Before tx due to fibroids, my period was SUPER heavy and prolonged...i'm glad i don't have to deal with that as well. Though at 44, I due have concerns about early menopause....
I too am single and grateful for it, though sometimes I hear lovely stories about supportive husbands...and then i wanna throw a pity party!
Call me a cynic, but . . . . . .
I think it's too darn much work while on TX. (or while NOT, for that matter) *LOL*
wyn
PS - You put up with a friend crashing at your place for a month!
What a saint!
I think it's too darn much work while on TX. (or while NOT, for that matter) *LOL*
wyn
PS - You put up with a friend crashing at your place for a month!
What a saint!
Meki! have not seen you on much. Of course I had no DSL a week and haven't been on a lot either to even keep up on post. thank you for the words. I am trying , more honestly instead of the fake "I'm okay" to let them know I FEEL AWFUL! It is slamming me already and only 4 weeks in AND only 800Riba, 180mg pegasys, but I did well until this past week and D*M.....the semi hit me and ran. I'm about to post on that (why all -so much- all of a sudden?) THO, with all some you go thru and me 'only' 24 weeks, 2b, I really hate 'whining' on it. I had thought "how can I slow down, not get things done?" well, my body is making that decision for me! Good to see you on more. Enjoy your post.
Willy.....ohhhh to funny on your post! I LOVED and LMAO on the "In computerese" and I have been supplying a bit of 'basic maintenance" :} And I just have to add....as you opened that file:}......he actually had 'a sore mouse" (or rather, two sore 'mice'!? not the main 'mouse':} of which I resumed 'basic maintenance". (Still LMAO and needed that as shot night & in bed.) He had blamed it on riding the motorcycles with tight pants and I knew that was a 'trying to be nice' excuse and figured out his temporary files needed deleted! (and after only 3-4 days of ‘back up files’??}
That has got to be one of the funniest post I have read and thank you very much for a mans view.
----------------------------------------------------------
On a serious note, you said:
I sometimes worry that children may end up interpreting a parents behavior during treatment as how the person on treatment really feels. It might be easy to interpret riba rage with honest anger at a person.... or to confuse fatigue with disinterest. For women to feel a certain way during treatment is predictable and understandable. I just think that some level of communication is required so that the issue is very clear to the man. They need to understand it in their heart as well as in their mind.
------------------------------------------------------------
I agree and we are VERY open with each other. I think I had just not gotten thru just how bad I feel and needed to. My 3 sons are all grown, tho here every day for me and so very understanding. There is rarely even cross words between us and I have totally prepared them to NOT take me personal in any bad moods/comments the next few mths. Good points to bring up.
And thanks for the friends thing tip. just nothing ever happened when I'd click 'accept'. Guess I was waiting for fireworks:}
Thanks for the LMAO while feeling like dog doo :}
LL
Willy.....ohhhh to funny on your post! I LOVED and LMAO on the "In computerese" and I have been supplying a bit of 'basic maintenance" :} And I just have to add....as you opened that file:}......he actually had 'a sore mouse" (or rather, two sore 'mice'!? not the main 'mouse':} of which I resumed 'basic maintenance". (Still LMAO and needed that as shot night & in bed.) He had blamed it on riding the motorcycles with tight pants and I knew that was a 'trying to be nice' excuse and figured out his temporary files needed deleted! (and after only 3-4 days of ‘back up files’??}
That has got to be one of the funniest post I have read and thank you very much for a mans view.
----------------------------------------------------------
On a serious note, you said:
I sometimes worry that children may end up interpreting a parents behavior during treatment as how the person on treatment really feels. It might be easy to interpret riba rage with honest anger at a person.... or to confuse fatigue with disinterest. For women to feel a certain way during treatment is predictable and understandable. I just think that some level of communication is required so that the issue is very clear to the man. They need to understand it in their heart as well as in their mind.
------------------------------------------------------------
I agree and we are VERY open with each other. I think I had just not gotten thru just how bad I feel and needed to. My 3 sons are all grown, tho here every day for me and so very understanding. There is rarely even cross words between us and I have totally prepared them to NOT take me personal in any bad moods/comments the next few mths. Good points to bring up.
And thanks for the friends thing tip. just nothing ever happened when I'd click 'accept'. Guess I was waiting for fireworks:}
Thanks for the LMAO while feeling like dog doo :}
LL
Call me a cynic, but . . . . . .
I think it's too darn much work while on TX.
--------------------------------------------------------------
And that would be a part of the problem :}
I am sorry you are feeling so rough. I just can't imagine doing so many weeks of this as I am fighting myself on 'can I do this' at ONLY week 4! And with only 24 to do! Thats why I hate to 'whine' on here
:{ You are some &%$#@# STRONG people and I know why you fight so hard, but KNOW how very strong you are to do this, even when you feel so not strong. MANY of you amaze me here. You'll join civilization again, and be single out there :} okay, that could be good or bad, trying to cheer you up here! If you start the Bar-B-Que, and head towards your 'flocks'....think about Ladywhy's paxil suggestion :}
lady why......49 and would not mind the cycle stopping! Do miss the libido tho my energy level stops even missing it much!
thanks all, feel good, better......................LL
I think it's too darn much work while on TX.
--------------------------------------------------------------
And that would be a part of the problem :}
I am sorry you are feeling so rough. I just can't imagine doing so many weeks of this as I am fighting myself on 'can I do this' at ONLY week 4! And with only 24 to do! Thats why I hate to 'whine' on here
:{ You are some &%$#@# STRONG people and I know why you fight so hard, but KNOW how very strong you are to do this, even when you feel so not strong. MANY of you amaze me here. You'll join civilization again, and be single out there :} okay, that could be good or bad, trying to cheer you up here! If you start the Bar-B-Que, and head towards your 'flocks'....think about Ladywhy's paxil suggestion :}
lady why......49 and would not mind the cycle stopping! Do miss the libido tho my energy level stops even missing it much!
thanks all, feel good, better......................LL
Thanks for the kind words. I'm glad you got a chuckle or even more out of it. I was starting to worry about whether I should have responded in a "womens" thread. (note to self; "if yer a dude, don't respond in "womens" threads) : )
One thing that briefly crossed my mind (since most things do cross men's mids briefly) is that like the thread women do need sanctuary in their own threads on occasion; it's a place that perhaps men shouldn't trespass. Likening it to the thread topic...... there could also be periods (oh....like when women are on Peg-Interferon) that all bets are off and certain things are just verboten and a no-fly zone. I think NYgirl made mention of deleting permanent files if lines were crossed. : )
And now I'm going to tip toe out of this thread and respect your space.
best to you all,
Willy
One thing that briefly crossed my mind (since most things do cross men's mids briefly) is that like the thread women do need sanctuary in their own threads on occasion; it's a place that perhaps men shouldn't trespass. Likening it to the thread topic...... there could also be periods (oh....like when women are on Peg-Interferon) that all bets are off and certain things are just verboten and a no-fly zone. I think NYgirl made mention of deleting permanent files if lines were crossed. : )
And now I'm going to tip toe out of this thread and respect your space.
best to you all,
Willy
I don't have any children at home to take care of either. My only son is 26 and does not live with me. My husband does not live with me either, he lives 45 min. north of me, up in North Brevard (not too far from where we had our luncheon). For a lot of reasons, this (strange-though quite different), lifestyle has been the best option for us. We were married for 10years and then, divorced and then, we couldn't seem to not be a part of each other's life, but at the same time-we couldn't life together and get along either. So, we were remarried and then, maintained our separate living arrangement. Even if we shared a house-he works about 24-7 and I'd never see him that much anyway. We get together on the weekends when he actually takes a break for a short period of time. When I was on treatment-I didn't want to be bothered w/anything other than the periodic basic maintenance 'file saver'.
Susan
Susan
same stage as you, 3 wks in. One day I'll be planting flowers. next day can't wa;k even.
try to explain the drugs give you the fju everyday....how frisjy was he last time he had the flu.
i will say, don't overshare but don't undershare, if he asks tell him.. theres a hornet biting my liver on the inside...or...it feels like a hundred ants are biting my skin...or whatever.
leave some reading material on hep C sysmptom by the toilet, he might read them.
hope that helps. Try to do something with him, even if its just going to a movie...or dinner...something to lessen his stress and wrry, and leave hope that one day things may get better again. It not easy on us, or the caregivers either one.
hope that helps.
try to explain the drugs give you the fju everyday....how frisjy was he last time he had the flu.
i will say, don't overshare but don't undershare, if he asks tell him.. theres a hornet biting my liver on the inside...or...it feels like a hundred ants are biting my skin...or whatever.
leave some reading material on hep C sysmptom by the toilet, he might read them.
hope that helps. Try to do something with him, even if its just going to a movie...or dinner...something to lessen his stress and wrry, and leave hope that one day things may get better again. It not easy on us, or the caregivers either one.
hope that helps.
I am a newbie here and not at the stages of most of you folks....and my prayers and thoughts are with you all.....I just have one question................Where on anyone's headstone does it EVER say....I wished I would have worked more?????? See I guess I think that if you are battling to become well, there are more important things than I JUST HAVE TO WORK BECAUSE IT HAS TO GET DONE..... I believe making yourself well should be number one priority.....become as well as you can so you may be the best you can be for the PEOPLE WHO LOVE YOU not for the PEOPLE WHO WANT SOMETHING FROM YOU (ie work) rest rest rest......without proper rest...as best as we can with this damned disease....., then the body cannot fight the best it can...sorry just my opinion....hopefully your man will be understanding and maybe if the sex is not the priority...then hug hug hug......touch touch touch......hopefully he can give the same back......i know it lessens the feeling of my husband thinking "I do not want him" if i am too tired or sick to "put out", but I do know as I wrap him in my arms and love him and hold him as i explain it seems to mitigate some of his hurt feelings...again just my thoughts...all the best to you LL
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