we still have a long ways to go

[doll face]

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

[carpedi]

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.

[mikesimon]

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

[mikesimon]

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

[friole]

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.

[chellski]

you're not alone; you have all of us here!
<3michelle

[v eggie dip]

thank you for your kind words, it means a lot !