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we still have a long ways to go

Hey everyone, Just needed to let off some steam. I had a garage sale this weekend at my house and put out some pamplets that I had gotten from my doctor about hep C and awareness. I could not believe some of the responses that I got from people. Quite a few asked me about this disease and my journey through it. A number of people knew someone that had it. But I was shocked at how a few reacted. One older lady for example asked how I could dare put out clothing or anything else to the public when I knew I had this DRUG disease (I caught it from a blood transfusion) not that how anyone gets it make a difference to me, and another said that she couldn't believe that I would actually TELL anyone I had it. Well of course in my polite lady like way I told them both what I thought. LOL You should have seen thier faces. Priceless!!! Anyways I did end up having a very profitable sale regardless of my unspeakable disease (even though I am now 9 months post clear) and have contributed half to a hep c awareness program.  I was just so damn mad though that it is still such a "hush hush" subject that I thought I would do something new to bring it out in the open. What do you think? Was it a dumb idea?

Have a great day !! Kim
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Avatar universal
ol jacko prob put on his rubber gloves to hang w/ryan - he's very germ-o-phobic!
your too funny....
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Avatar universal
Remember Ryan White, the boy who contracted AIDS from clotting factor?  People stated that they saw him urinating on the vegetables in the supermarket.  There is no limit as to what some people will say.
He did a pretty good job educating people, and even became buddies with Michael Jackson.  Ryan's mother said that Michael was very nice to Ryan and never gave him Jesus Juice or tried to touch him in any way.  Well DUH!  Ryan had AIDS.
DJL
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Avatar universal
Well I'll say there is a long way to go! How about a complete cure?

I dont think i am waiting for "acceptance". I am waiting to be cured.
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Avatar universal
i'm very open.  The longer you are actively aware and share on boards like this, the more natural it becomes to just be very causal about it all.  @times it seems as if everybody has it, knows someone or is related to someone who has it.

I like to give hope to people that it's curable and livable.  In fact, when offered alcohol, I'm quick to say that I have/had hep c not alcoholism!  And my non-drinking makes people more uncomfortable than my hep c, b/ my reason reassures them for some reason.  So then they are comfortable drinking in front of me.
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Avatar universal
I have to agree with Mike on this one, with your job I too would keep it under wraps. Like I said earlier to Iceboy,it is a real personal decision to each of us. Fortunately I was able to speak out, but I do not expect everyone to be in such a situation. I would get on the doctors if I was you. There is no excuse for them to disregard your wishes about calling your office. period. Good luck to you. Kim
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Avatar universal
This is such a good forum for discussion.  It so helps me make my own decisions.  I see that disclosure or not is a very personal decision, and different in every case.  I will talk again to my medical providers and discuss alternatives for calls at work.   For the time being, I think things must remain the way they are for me (undisclosed).  However, Mike, I like the lifestyle change you made.  I imagine you are much more stress free. Gosh, I always wanted to be a marine biologist, but I live in the desert.................

I do think I will talk to my GI, though, and tell him I would be glad to speak with newly dx hep c patients and give them my experiences and show them information (like this forum) to help them make their decision.

I admire every one of you who is open and advocates.
Kathy
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Avatar universal
When I was dx in 2000, I was very reluctant to tell anyone and HATED telling my family though I knew I had to. Since I have started tx it no longer matters to me who knows. I'm really lucky in that I'm retired and don't have a job to keep, and I've reached that point in life where I don't really care what people think - if they're true friends, they'll stay that way, if not, I don't want them anyway. Since I've been open about it I've been surprised by how many people respond with sympathy and "oh, my sister,(cousin, friend, etc.), has that, so I know what you're going through". And other people will say, "I've never heard of that. What is it and how did you get it?" With those, I'm very careful to say first thing that they will not get it from me unless they force me to put my blood directly into their bloodstream. And then I tell them that I know more about how I didn't get it than how I did - no tattoos, drugs, transfusions (that I'm aware of), but lots of surgeries, invasive dental procedures, infected manicure/pedicures, and in short, that I don't really know how I got it - I was just in the wrong place at the right time. Most folks seem satisfied with this and so far (knock wood) I've not had a really disappointing reaction.
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Avatar universal
I see your situation more clearly now and can understand your reluctance to disclose. I really hate to say this but maybe non-dislosure would be wise if you can handle it. I treated 3 times the second 2 txs were Peg-Intron and then Pegasys in that order. I don't think my condition would have gone unnoticed while I was on Peg-Intron because I felt terrible all the time. But Pegasys was so much easier on me that I think I could have kept my disease a secret during that course of tx(and it lasted 73 weeks). I guess it mostly depends on how you feel and whether you can get your medical team to follow your directions regarding calls and faxes etc. With the intence focus on medical privacy today a strong directive (and maybe just a tiny vague threat) should insure that communications be directed in strict compliance your instructions. But your ability to keep this a secret ultimately depends on how you feel. I know how conservative  tax clients can be. I worked as an attorney myself but not in that area. I run a small radio station now and the climate is nothing like it was when I practiced law. I doubt I would have been as open about my health issues at that time. If you are feeling okay I'd straighten out the docs etc. and keep everything out of the office. I know that is a difficult way to handle this stressful time and it wouldn't be my preference for sure. But you're in a position to assess the fall-out and if you think that's the best way and aren't feeling too bad it can be done. I wouldn't assume that you're going to start feeling a whole lot worse than you do now since you've treated for a month. I really wish you the best all the way around. Good luck. Mike
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Avatar universal
Not being familiar with your business and personnel I don't know how the truth would play out. I do think that fighting this virus takes a tremendous amount of energy and the work and anxiety involved in hiding your situation cannot be beneficial. I sure hope you can resolve this either by fessing up or getting your correspondence directed to a more private place. I do agree that disclosing the source isn't important - transfusion sounds good to me. I wish you the best of luck all the way around. Mike
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Avatar universal
Califa - you are SO right about all that risky behavior - eating chicken fried steak, wrapping your GTO around a tree and living only because you are too drunk, smoking and saying "not me, doesn't affect me."  Lost of pompous people out there.

Mike - I too am the boss.  It is getting more difficult to hide (dx way in May, tx started 7/15) So many blood tests, doc appointments, etc.  I think the gang suspects something, and I am going to have to fess up so they don't think it's cancer.  These doctor's offices keep calling the office phone (and identifying themselves as Dr X)even tho I told them only call on the cell.  But even when I get calls on the cell, that is not my style so they suspect something.  Then I run over to the fax and await the blood test results.  Suspicious behaviour.  Then one of my employees came behind my desk the other day and I had my blood test results scheduled on excel on the computer screen (yes, I am anal).  Yea, the jig is almost up!  In a way, I will be glad, but I worry about the stigma.  I had a blood transfusion  in 1977 and I am going to hide behind that.  Most probably that was not the source, but they don't need to know that.
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Avatar universal
you're not alone; you have all of us here!
<3michelle
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Avatar universal
thank you for your kind words, it means a lot !
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86075 tn?1238115091
Gee Dollface, youre quite a woman!!! I along with everybody else it seems, think that it's wonderful that you did that, not everyone would. As much as I hate the traffic and overpopulation here (in some sections) I do feel lucky to live in W. Hollywood at least in terms of the open-mindedness here. There are so many artists, musicians, actors and such that if I threw a rock out of my window I'd probably hit someone with hep c or HIV. So it's easy for me to be forthcoming about it, but it does take real "gumption"(good word) for any hepper to do what you did. I really applaud you. We don't have enough possitive press about our disease, and it'll be up to us to put it out there it seems. Grassroots or however. Good on you!

Califia: ha ha, you crack me up. I picture someone kinda portly eating out of a bucket of KFC throwing chicken bones at us!  
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You're a queen. An Empress. A true delight of royalty. A kick-ass true American sweetheart! You done good. frank
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Avatar universal
Thanks dollface, you said what I would love to shout from the rooftops. Even if you did catch it from drugs...WHAT difference would it make???? I know everytime my mom mentions that she spoke with someone about this disease she always includes the fact that she didn't tell them about me. One of these days I'm going to tell her, "go ahead and tell whoever, I don't care anymore who knows and who does not".  I applaud what you did....

I wish the best to all of you who are dealing with this.
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Avatar universal
I just came back from a pain management intial consult and he started asking reasons for the herniated discs, hello, age?, I guess he gets a lot of worker's comp cases. In any case, I mentioned the hep c and tx, and he asked how I got it? I was taken aback because why would that matter for the medical hx, but I gave two possible causes anyway. He recorded a "letter" to my neurologist while I was there and was very detailed in it, so I guess it is just his manner of gathering the patient's hx, very detailed. It still kind of bothered me.  When he got to the narration of the hep c and said;"patient is hep c active" I stopped him and signal NO, that felt real good.
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Avatar universal
I have not told anyone I tested postive for Hep C except my children and husband.. (had to so they could be tested)

I know how the other family memebers would react, especially my husband's side, they would immediately think I was a drug user and wouldn't hear any other explanations (very ignorant people) and as far as freinds go, it would probably be okay to tell them but I don't think I am ready to go there...

I was totally ignorant about the virus until I found out I have it...I always thought it was from dirty needles and street drugs, never was told otherwise and never knew anyone that had it...I still have a hard time believing that I got this 38 years ago from a blood transfusion but my doctors assure me that it is so.

I think it is wonderful that people can openly discuss this and like some of you go to a rally and speak out in public but I can't even get my husband to listen to me about it, he thinks it is to be dismissed I guess...So I go it alone!  Oh well, hopefully it will not consume my life like it did for the first month after I tested positive...

Beth
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Avatar universal
It's a tax practice - very conservative clientele.  Might be okay with the employees here (we've mostly worked together over 20 years), but it will be difficult to have to go into with clients.  However, if I start getting unusually tired, I may have no choice.  I will probably discuss it with my partner only soon, and go from there.  I am also president of the local Business & Estate Council for the year (group of lawyers and accountants and other professionals)- a job I took prior to dx but which just started.  Oh well, it may be fish or cut bait time.
Kathy
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Avatar universal
Good for you dollface! I have said it before, I don't care who knows I have HCV...the more the merrier! I took all those pamphlets I got from the march in NYC last Tues and spread them out on the conference room table at work. I told everyone that they can read up and all their questions should be answered. One guy from another dept asked where they came from and I told him...he kept reading and said 'I have no idea what Hep C is...' Another woman asked if she could borrow them to take home and read. At least this way, if anybody is afraid to ask me they can read for themselves and feel a little more relaxed. It's true about the docs though, mine asked where I thought I picked it up and I told him about that damn blood transfusion but I also added 'who knows anyway, maybe when I was a kid playing blood brothers/sisters...who really knows?' The more people I tell, the more stories I hear about their family and friends who have it. Very liberating to know I am not alone and very sad to know what a closet disease this is...
Cin
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Avatar universal
Thanks everyone for the overwhelming positive responses. I would have done it again even if the response from all of you were negative. I think that I did help a few people realize that this disease can be caught many different ways. I even believe that a few of them will go get tested. If I reached just one person than it was worth it to me.

I am not looking for praise from anyone, and I believe that most of you would do the same thing. I am just one regular person who went through a whole lot with this disease and hope that I can help make it easier for just one more person, who's life that hep C has invaded.  

I am very proud to call you all friends.
Kim
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Avatar universal
wow, I thought I was the only one peaking out of the closet with this disease. I find it very tormenting at times. Somehow I imagined you where all very open about it. Im so newly diagnosed and have done so many things wrong in terms of who to tell, what to tell and whom not to tell!!. I
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Avatar universal
Don't worry you are not the only one who is not very open about it. Sometimes I think that I shouldn't have been ,but then I realize that the majority of the people I do talk (which is anyone who listens LOL) are really surprised at how this disease can be contrated. I have gotten more positive responses from people than negative, but that is just me.

It is not something everyone can do. Your personality, lifestyle, family, friends and job have alot to do with it, my husband is not ashamed but would rather I not publicize it, (he knows I am going to anyways)and my friends were very supportive (more so than family)I did lose one job over having hep c (bar manager, I could have sued to get my job back but why bother) I don't condemn anyone who does not tell people, I for one am just very outspoken.
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Avatar universal
Yes, isn't it wonderful to say that I HAD hepatitis c, not that I have hep c. When I went to apply for more life insurance I got the 50+ questions about my health. When it came to the" Have you ever had hepatitis question" I was so happy to have said yes, BUT I cleared it. I still have to do the  blood tests, and physical part yet, so I will let you know what they say about it when I get questioned in person.

I hope everyone else here gets the chance to say " I HAD hep c"
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Avatar universal
It
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