To Brendan's point of disclosure I did have my first "idiot" encounter this week while returning to work (ski instruction). People have been asking me Im not working yet when they see me in the locker room going out for a few "get back on my feet" runs. I tell them, the listen with interest I give them facts studies to back my facts up, websites ( wikipedia is actually pretty good and simple ).
Anyway I was talking to someone about it and he basically said it's an STD. I explained to him what needs to happen for transmission to occur, that according to Dr Michael Picco at the Mayo Clinic via their web site sexual transmission is .6% in hetro monogamous relationships and 1% in non-monogamous hetros. With some studies saying it's null, and the CDC saying 5% max for all sex. I told him the basics like the blood that's infected has to enter the blood stream not just the body....ect. Didn't matter the guy must of had a dream where he played a Doc in a TV ad. In the end I just thought to myself, how sad is this that someone would think they know something about a complex disease like hep c. A major part of the problem is they think all hepatitis is the same. When in fact the hep c virus is in the same family of virus as yellow fever, and dengue flu. And has nothing to do with hep a,or b other than the organ they attack.
Oh well can't win them all I'd say the ratio is at about 20 to 1 people who listen/people who think they know. Frustrating for sure but actually more pathetic.
Tx in a few hours, let's get it on interferon come and get me.
Peace,
James
Kirstin said
Dec 3, 2010
I will keep things close to my chest. I find that people are just busy-bodies lol I will just keep-on keeping on until I cant hid it anymore & by then it won't matter, just will take time off work until I feel better
-- Edited by Kirstin on Friday 3rd of December 2010 07:38:49 AM
BJ said
Nov 27, 2010
Gidday Kirstin,
There are a lot of people about who have nothing better to do than talk badly of others, and these sort of people don't need to be fed information about yourself, that you are already having trouble dealing with. Limiting who you talk to about personal issues is very important, particularly if you don't know of their tendency to gossip. Given that you are more concerned with tx and getting rid of the HepC virus, perhaps you should just concentrate on that and leave talking about it to someone else, and for the time being just keep it to yourself.
Now there are places and times where discussing HepC publicly is of value, but I would think unless you are entirely comfortable with ALL the issues of HepC, entering such a discussion or public debate would have to be carefully considered. Once again, you are only learning and getting involved here not really in your best interests.
You appear to have brought some issues of your previous life with you, and while that is your choice and perogative, what is most important as you begin tx is whether you are sure you can cope with the period that you will essentially be locked up to some degree, as you go under the effects of tx drugs. Having a job, a partner and a few friends is really the ideal sort of inner circle of support to have while doing tx, so despite you doubts about what other unrelated and/or unwanted people, you are in an ideal support situation.
Essentially apart from my partner Margie, workmates and some medical staff, that is all the support I've needed, apart from this wonderful Forum, to get to where I am today on tx. I find a small tight group of friends and colleagues the ideal sort of support. Good luck on tx.
Cheers,
Brendan.
James10500 said
Nov 26, 2010
Kirstin
You're going to beat this. And you now have friends to help you.
Best wishes
James
Kirstin said
Nov 26, 2010
Hi James, I commend you for your bravery. Where I live, people just don't understand. You can only educate those who want to learn, most people, in my experience, don't. My closest friend, bless her heart, likes to believe that I have liver cancer . That way I can still frequent her home, hug her children. It is what makes her feel secure. ( She knows I have Hep C, she was there as support when I found out). Thats okay tho, I allow her the comfort of that. You see... To know me.. well.. I lived/live a beautiful life. I had a future all mapped out, others had that same future for me, invested in it.. I blew it..I complain that I have to go to work everyday ( I work damn hard, not behind a desk.), I, honestly, had it easy. I am fortunate enough to have lived/live a very nice life, I chose/choose to make it hard on myself). I left all of that behind for someone I thought I loved. For approx 7 years I lived a life I never thought existed. I could blame others my mistakes, I could have left as soon as I found out but didn't. Instead my pride (my mother told me when I left Australia, " You will come home broke & alone') , made me stay. I, never having ANY experience, found myself in the middle of a huge drug empire. Rest is history... He is deceased, liver cancer.. I am alone.. I miss him hugely, I hate him.. For those few years I gave up my children, I gave up respect (mostly for myself) because I couldnt face the decisions I had made. I have no support now, apart from a few friends, my partner. I don't see my children... That.. well... I cant express my guilt.. my heartache... .. It kills me slowly each day.. Anyhow... thats where my shame comes from.. that I had everything.. now I have, well, my job, my partner & a few friends.. But I now can regain my pride! No-one, not a person will ever look down on me again .. I have done that enough to myself. People feel better knowing nothing.. that life is A-OKAY... People like me dont get sick with diseases such as... thats fine, all good..
James10500 said
Nov 23, 2010
Hi, Kirstin
You sound like your driving yourself hard on the stigma issue. I'm not saying it's not real it IS. But stigma equals ignorance. I'm the exact opposite of you in that regard I will tell everyone and anyone I have hep C, what hep C is how it's transmited, that it can kill you, that effects your brain as well as your liver. People should not feel bad about themselves nor made to feel bad about themselves because they have hep C. I feel somewhat of an obligation to educate people. Work has started up again for me and people have been open to learning about it, or knew what it was already. That's a long winded way of me trying to tell you NOT to feel bad about yourself as if your dirty. Please don't add this burden it's tough enough to get through on it's own
James
DGiga said
Nov 22, 2010
Hi Kirsten, The girl on the bus sounds ignorant. There are people like that everywhere, Loud Mouths! I can see that you have a positive attitude and that is already a good sign. Any questions you may have about my experience on tx, just ask away. Remember everyone feels the sx (side effects) differently. When you first begin treatment you should expect to feel flu like symptoms, for 2 to 3 weeks. maybe even a fever. I think that is the tx fighting the hep C. Most everyone would agree with me on that. Just take it one step at a time, and drink lots of water to flush the tx through your system. Eat well and lay down when needed. I spend more time in bed then I do anywhere else. Whatever my body says is needed, I try to accommodate. So far so good. I am on week 31 with 17 weeks left to go. My hep C is undetectable and has been since week 11. I have a positive attitude and I am praying for the best outcome. Hugs Dee
Kirstin said
Nov 22, 2010
Thanks Dee for replying to my question It was actually my cardiologist who first saw them (I hadnt even realized that they were there..??) & recommended that I have my bloods done. Though I have to say that he frightened me with his words "chronic liver disease" but I am glad that I took his advice.
I have told three people other then my partner, their reactions being worlds apart. Two of my dearest friends, well, I could have any disease and they would still love me but my other friend, I dont hear much from her anymore. Not too concerned about that though, don't need friends like that really. I just find the whole disease humiliating I suppose. It makes me feel dirty. I loathe having to go to the clinic and although we are all there for the same reason/problem I feel as though there is even a class system, if you will, there. I know I shouldnt but I cant help but look at the others and try to guess how they may have been infected. I know they are doing the same. Why do we do that? To make ourselves feel better? That is what the stigma attached to this disease has done. Its shameful but its real, unfortunately. Actually, I was travelling home from work yesterday and couldnt help but hear the conversation of two other passengers (they were LOUD). They were talking about a friend of theirs and how she drinks too much. The female said, for everyone to hear, 'I stopped drinking, had to because of the cirrhosis caused by my Hep C'. I could never announce it like that. I saw the looks of disgust on the other passengers faces. So I will stick to just telling others that I am starting chemo & leave it at that.
I have to say that I am still very unsure & frightened about the treatment. So much of it is still unknown & unclear to me but I am in this for the duration I would never just give up, no matter how bad it may get. Its just the waiting, wondering etc that I am experiencing rite now that is the hardest but I just know that once I start the treatment, when I know the amount of damage my liver has etc I will be just fine. There will be no stopping me! You watch
DGiga said
Nov 18, 2010
Hi Kirsten, Now you are talking my language. When I first joined this forum, I asked if anyone had these but I really didn't get much in replies. Yes, I have them on my chest, upper arms, here and there and everywhere. I even have 2 on my face.
My doctor was vague on telling me what to expect from tx also. I found out everything I needed to know about tx from this forum. First hand knowledge!!
If I have to tell someone why I am sick, I tell them I am on chemo. Then they ask, for what? I tell them, it's my liver. My immediate family knows the truth but for those nosy people, it's chemo!
I just had to write you about the Spider Navei. I was hoping they might fade or go away but they haven't. I think they are tiny broken blood vessels. If that is the case then I don't think they can go away. Well, here's hoping. Dee
ty said
Nov 18, 2010
Hi Kirstin,
Welcome to the forum from me as well. As Jan stated the Sx's are a little different for everyone so you can't really tell which ones you will get. I know the literature can be a bit scary, but it has to cover every possible eventuality. If you read the literature on the side effects of aspirin it can sound very scary as well, so take it one day at a time.
I'm a lttle different from others on the forum in that I tell anyone who asks why I'm on "chemo", the truth that I have Hep C. I can't advise others to do the same because I don't have to work and my friends and family know to expect the absolute truth if they ask. Because I'm in the position I'm in, I feel that I can take a little of that stigma away by educating others. Who knows? Hope you are feeling well, ty
jan said
Nov 18, 2010
Hello Kirstin, Welcome to the forum from me. Treatment effects different people in different ways so try not to worry too much. I'm sure more experienced people than me will be along soon to give you more information.
I decided to go through treatment not telling anyone who didn't need to know. I somehow got away with it by telling them I was on treatment and I didn't want to discuss it. I really don't know what they thought and I didn't care. I did what was right for me and that was the only way I could get through it. I am 6 months post tx now and svr and still I havn't explained what the tx was for. Only my husband, daughters and 1 friend ever knew.
You have to put youself first and do what is right for you and what will get you through this with as little stress as possible. This forum helped me beyond belief. People here understand what it is we are all going through. Things will work out fine.
Love Jan x
Kirstin said
Nov 18, 2010
BTW Just wondering.. how many of you found spider naevi on your chests etc?
Kirstin said
Nov 17, 2010
After all of the visits to the liver clinic, doctors etc I still haven't really been told what to expect during the TX treatment. I know what I have to do, how long it's going to take etc etc but no-one has discussed the side-x's with me. I have asked & all I recieved is a booklet that really doesnt tell me anything at all but a list of what could happen (which truly scared me). I would rather be prepared for it by talking & hearing about it by others going through it as well, not some booklet that doesnt offer me that much information.
Also I need advice on what to tell others?. Today for example my partners mother & grandmother dropped in. (My partner & I have decided to not share the fact that it is Hep C , just some kind of 'blood disease', I know, vague but). I wasn't sure what he had told them so when I was asked about how I am feeling, when I would get results back etc. (I was told by the doctors etc to just say that I was starting 'chemo' & I would be better soon.) So thats what I said... You should have seen the shocked look on their faces. Obviously he has decided not say anything at all & just allowed them to think that it's got to do with another condition I suffer from (SVT). Now I feel bad/stupid & just know that he is going to be upset that I said what I did. Talk about stressed out....
I will keep things close to my chest. I find that people are just busy-bodies lol I will just keep-on keeping on until I cant hid it anymore & by then it won't matter, just will take time off work until I feel better
-- Edited by Kirstin on Friday 3rd of December 2010 07:38:49 AM
Gidday Kirstin,
There are a lot of people about who have nothing better to do than talk badly of others, and these sort of people don't need to be fed information about yourself, that you are already having trouble dealing with. Limiting who you talk to about personal issues is very important, particularly if you don't know of their tendency to gossip. Given that you are more concerned with tx and getting rid of the HepC virus, perhaps you should just concentrate on that and leave talking about it to someone else, and for the time being just keep it to yourself.
Now there are places and times where discussing HepC publicly is of value, but I would think unless you are entirely comfortable with ALL the issues of HepC, entering such a discussion or public debate would have to be carefully considered. Once again, you are only learning and getting involved here not really in your best interests.
You appear to have brought some issues of your previous life with you, and while that is your choice and perogative, what is most important as you begin tx is whether you are sure you can cope with the period that you will essentially be locked up to some degree, as you go under the effects of tx drugs. Having a job, a partner and a few friends is really the ideal sort of inner circle of support to have while doing tx, so despite you doubts about what other unrelated and/or unwanted people, you are in an ideal support situation.
Essentially apart from my partner Margie, workmates and some medical staff, that is all the support I've needed, apart from this wonderful Forum, to get to where I am today on tx. I find a small tight group of friends and colleagues the ideal sort of support. Good luck on tx.
Cheers,
Brendan.
I can see that you have a positive attitude and that is already a good sign. Any questions you may have about my experience on tx, just ask away. Remember everyone feels the sx (side effects) differently. When you first begin treatment you should expect to feel flu like symptoms, for 2 to 3 weeks. maybe even a fever. I think that is the tx fighting the hep C. Most everyone would agree with me on that.
Just take it one step at a time, and drink lots of water to flush the tx through your system. Eat well and lay down when needed. I spend more time in bed then I do anywhere else. Whatever my body says is needed, I try to accommodate. So far so good. I am on week 31 with 17 weeks left to go. My hep C is undetectable and has been since week 11. I have a positive attitude and I am praying for the best outcome. Hugs Dee
It was actually my cardiologist who first saw them (I hadnt even realized that they were there..??) & recommended that I have my bloods done. Though I have to say that he frightened me with his words "chronic liver disease" but I am glad that I took his advice.
I have told three people other then my partner, their reactions being worlds apart. Two of my dearest friends, well, I could have any disease and they would still love me but my other friend, I dont hear much from her anymore. Not too concerned about that though, don't need friends like that really. I just find the whole disease humiliating I suppose. It makes me feel dirty. I loathe having to go to the clinic and although we are all there for the same reason/problem I feel as though there is even a class system, if you will, there. I know I shouldnt but I cant help but look at the others and try to guess how they may have been infected. I know they are doing the same. Why do we do that? To make ourselves feel better? That is what the stigma attached to this disease has done. Its shameful but its real, unfortunately. Actually, I was travelling home from work yesterday and couldnt help but hear the conversation of two other passengers (they were LOUD). They were talking about a friend of theirs and how she drinks too much. The female said, for everyone to hear, 'I stopped drinking, had to because of the cirrhosis caused by my Hep C'. I could never announce it like that. I saw the looks of disgust on the other passengers faces. So I will stick to just telling others that I am starting chemo & leave it at that.
I have to say that I am still very unsure & frightened about the treatment. So much of it is still unknown & unclear to me but I am in this for the duration
Hi Kirsten, Now you are talking my language. When I first joined this forum, I asked if anyone had these but I really didn't get much in replies. Yes, I have them on my chest, upper arms, here and there and everywhere. I even have 2 on my face.
My doctor was vague on telling me what to expect from tx also. I found out everything I needed to know about tx from this forum. First hand knowledge!!
If I have to tell someone why I am sick, I tell them I am on chemo. Then they ask, for what? I tell them, it's my liver. My immediate family knows the truth but for those nosy people, it's chemo!
I just had to write you about the Spider Navei. I was hoping they might fade or go away but they haven't. I think they are tiny broken blood vessels. If that is the case then I don't think they can go away. Well, here's hoping. Dee
Hi Kirstin,
Welcome to the forum from me as well. As Jan stated the Sx's are a little different for everyone so you can't really tell which ones you will get. I know the literature can be a bit scary, but it has to cover every possible eventuality. If you read the literature on the side effects of aspirin it can sound very scary as well, so take it one day at a time.
I'm a lttle different from others on the forum in that I tell anyone who asks why I'm on "chemo", the truth that I have Hep C. I can't advise others to do the same because I don't have to work and my friends and family know to expect the absolute truth if they ask. Because I'm in the position I'm in, I feel that I can take a little of that stigma away by educating others. Who knows? Hope you are feeling well, ty
Welcome to the forum from me. Treatment effects different people in different ways so try not to worry too much. I'm sure more experienced people than me will be along soon to give you more information.
I decided to go through treatment not telling anyone who didn't need to know. I somehow got away with it by telling them I was on treatment and I didn't want to discuss it. I really don't know what they thought and I didn't care. I did what was right for me and that was the only way I could get through it. I am 6 months post tx now and svr and still I havn't explained what the tx was for. Only my husband, daughters and 1 friend ever knew.
You have to put youself first and do what is right for you and what will get you through this with as little stress as possible. This forum helped me beyond belief. People here understand what it is we are all going through. Things will work out fine.
Love Jan x
After all of the visits to the liver clinic, doctors etc I still haven't really been told what to expect during the TX treatment. I know what I have to do, how long it's going to take etc etc but no-one has discussed the side-x's with me. I have asked & all I recieved is a booklet that really doesnt tell me anything at all but a list of what could happen (which truly scared me). I would rather be prepared for it by talking & hearing about it by others going through it as well, not some booklet that doesnt offer me that much information.
Also I need advice on what to tell others?. Today for example my partners mother & grandmother dropped in. (My partner & I have decided to not share the fact that it is Hep C , just some kind of 'blood disease', I know, vague but). I wasn't sure what he had told them so when I was asked about how I am feeling, when I would get results back etc. (I was told by the doctors etc to just say that I was starting 'chemo' & I would be better soon.) So thats what I said... You should have seen the shocked look on their faces. Obviously he has decided not say anything at all & just allowed them to think that it's got to do with another condition I suffer from (SVT). Now I feel bad/stupid & just know that he is going to be upset that I said what I did. Talk about stressed out....