Tuesday, July 17, 2012

I ate his liver with some fava beans and a nice chianti.

I like to post on Sundays, or if I can't make it by then, I try to hit Publish on Monday at the very latest but I had a hard time collecting my thoughts last week.  For the past month or so I've been feeling under the weather (if by under the weather one means 'like jumping out the window').  In a good month I'll get perhaps a week where I'll be running - I won't say 100% because to be honest, I don't ever remember running at 100% - at 90% and that is feeling pretty darn great.  The rest of any given month is iffy but one thing is certain, that above average peak doesn't last as long as I'd like it to.

This past month though, not only have I not reached the peak, I haven't even been able look up to see if I can catch a glimpse of it.  I am not a doctor, nor do I play one on T.V. but I have plenty of opinions and patience, (though since I'm being honest here, I happen to also be experiencing a major drought on the latter), so I think I know what's going on.

Most people that know me know that I have Hepatitis C.  I think I talk about it pretty freely because as in with addiction I think it makes things a lot easier for people to know that someone else is experiencing something they or a family member is experiencing.  Going through stuff together makes it easier for me and I know we like to hold hands as often as we can, even if (and sometimes even better maybe when it can be anonymously) its cyberspace hands.  There is a great on-line support group for all liver disease which has been of tremendous emotional help to me.  I have posted a link below.  In my opinion (like I said, I have plenty) I think we learn more from one another that are actually going through the difficulties than we do from doctors.  I like doctors, I mean, a doctor saved my life, but, well, a doctor also almost killed me.

There used to be a stigma regarding HCV similar to the HIV stigma because of the intravenous drug use connotation.  Hopefully that isn't the case anymore.  I haven't taken any polls lately but I certainly hope the general public understands that the only people catching HCV are not intravenous drug users as surely as people aren't catching it either by using a public toilet stall.  It's transmitted like HIV, open wound, blood to blood ONLY.  I have no idea how I caught it but I never mainlined anything and I still caught it so... there you go.  We can all catch HCV.  We can all be homeless.  We all have belly buttons.  Nice to know some things don't discriminate, huh?  It doesn't much matter now anyway, right?  Blame isn't going to get me anywhere.  I have it and I move on.

Many moons ago I underwent a treatment for it with a medicine called Peg-Intron (the Pegylated Interferon and Ribavirin cocktail).  If anyone with Hep C reads this and is pondering whether or not they should try this treatment, I can tell you that it has wiped this virus out to the point where it can't be detected from many, many people that I know personally.  They are now living healthy, normal lives.  It's not an easy treatment to undergo, so I know it's scary, but if your doctor thinks its time for you to try it because the virus is aggressively attacking your liver, please consider it and visit the website below for support (or write me).  Unfortunately, and I like to think its because I am so effing special, I was non-responsive to the treatment. 

My doctor doesn't want me to go through the treatment again because interferon is a pretty rough drug and well, look, I feel like crap but I'm really, really healthy.  See what I mean?  SPECIAL.  Not everyone knows right away that they contracted Hep C.  Some people go twenty years and don't know anything about it until their liver becomes cirrhotic.  The virus can only be specifically detected with a special test.  Your liver enzymes might be elevated but a doctor won't know for certain that the virus is present unless its tested for.  I started experiencing symptoms early on; I felt achy, had extreme fatigue and apparently my eyes were yellowing though in hindsight I find it hard to believe that it was that obvious.  When I went to my first gastroenterologist they barely knew anything about the C virus.  I remember him counting off the Heps: Hep A, Hep B, Hep C, Hep D, I think he got all the way to G.  In the 90's incidences of Hep-C were reaching pandemic percentages so not surprisingly research moved rather quickly (and I think they were able to divert and use alot of the research they were already conducting for HIV).  Within two years of my diagnosis I was referred to the Peg-Intron trial though to no avail. That was over 12 years ago.    

And now?  I wait.  I saw my specialist in February and he insists that I wait for a new treatment scientists are testing that combines four oral medications and does not include interferon.  He tells me he could run me through another round of the Peg Intron treatment but because I was non-responsive the first time, there is a huge percentage of a likelihood that it won't work.  So wait, he tells me. 

Back at the ranch, Olga feels like crap and it isn't getting any better and she's starting to wonder if she should pick up some Advil stock because she's going through those pills like Raisinettes at the IMAX.  And further more ladies and gentlemen, Olga is probably entering menopause, so not only is she achy and feels like someone has lodged a football under her ribcage in her belly, she also feels like strangling her husband.  And everyone driving with a phone to their ear.  And the guy turning left at the light that won't pull up so that we can both turn.  HELLO! 

Then it gets tricky.  Because I am an addict, remember? and I want some relief but the idea of taking medication to ease my discomfort petrifies me.  There is a bottle of SOMA that's been sitting in my bathroom for 3 years.  Do you know why I took only one?  Because it's a muscle relaxant.  Well, that's only partly true.  The main reason is because I am extremely unreasonable.  SOMA is probably as strong as the over the counter pain reliever that I bought in Spain a few years ago.  I am being a scaredy cat and maybe unnecessarily, but I need to be kind to myself too and note that I had a pretty hairy time because of my addiction so it's ok too that I'm being careful.

Anyway, I'm off to the doctors, yes plural.  The bottom line is that I need relief and I can't abuse my body any longer because of fear, that's almost as bad as abusing it with alcohol.  I think I've tried everything I can think of to avoid medication but I need to give in and take care of myself.  After all, I have books to publish and I need to be 90% as often as possible.  Also, my poor husband doesn't deserve it.  The guy turning left?  Um, Kung Fu you. 

© All Rights Reserved by John Godsey

No comments:

Post a Comment