I'M GONNA NEED A BIGGER BOAT.

I haven’t written a worthy word in two weeks.  Maybe it’s been a little longer.  I haven't felt well.  I’ve done nothing for my novel and the only thing I’ve done for my writing is that I’ve joined a writing group, and that took an enormous amount of tugging at the part of me that knows three months from now I’ll be happy I did it.  When I agreed to be a part of it, did I want to be part of it?  No.  But I know that I have to do things I don’t want to do or I get lost in a part of addiction behavior that becomes very dangerous for us addicts.  It’s called isolating.  Since as far back as I can remember I have enjoyed -and to be completely honest, preferred- my own company.  I’m delightful, really, but this is not healthy behavior and I know it.  I mean, I know it now that I’m sober, I didn’t know it before.  Before I thought it made me QUITE fascinating.

So, when asked if I wanted to participate in the writing group I smiled and blurted out a big and most probably overly emphatic ‘YES!’  Perhaps this all happened in my head and my yes wasn’t as sincere as I thought it should be, or actually wanted it to be and knew it wasn’t.  Thank heavens that these people I will be writing with are in the very, very small circle of people that I can honestly say I trust and can also honestly say I can be myself around.  That doesn’t mean I am myself around them. They have only caught glimpses of me so far.  I’m like Sasquatch, very hard to spot directly.  You will see more of me out of the corner of your eye because I won’t think that you are looking.  I’m certain they know what I'm talking about and that's why I adore them. 

But here I am right now, writing and enjoying every tap on every letter of this keyboard I‘m writing on. I’m looking at them, the letters, as I type these words and I know, and I feel and I remember how much I absolutely adore words and sentences and all this coming together to form ideas and a story.  How terrible to feel that I have nothing in me.  No inspiration to do anything but lay on the couch and see how high I can get my score to go on Bejeweled.  I’ve experienced The Block before in my life. It has lasted longer than a couple of weeks but this time, this time it was really complicated and it felt really scary.  It feels like suffocation.

Here, I am an addict and I am 47 years old and I have Hepatitis C.  That looks like this:

There’s a lot going on there.  AGAIN, let me be clear before I go on; I am not complaining because I am after all exceptionally healthy.  The only annoying thing that happens is that I start accumulating a lot of days of uncomfortable-ness.  Because of pain, because of hormones, because I'm me.  For the past few months I haven't had much of a break in any of those, so like I wrote the last time I actually blogged, I went to the doctor.  I received medication which in the addict world are called meds, and I bet in the regular world that’s what they are called too.  How would I know anything about regular?  I started taking an antidepressant pain killer called Cymbalta.  It’s one of those drugs that has a cute commercial in which 95% of the ad is taken up by the ubiquitous drug side effects that ultimately end in “may cause death”.  At a certain point of feeling uncomfortable for a long time, death seems like a valid option.

The pain, which isn't really pain it's just an annoying pressure, disappeared the next day.  I usually think this is all psychosomatic and that if they sent me a placebo the pain might have disappeared with that too.  Maybe that’s true, I don’t care one way or another.  The pain is gone and for that I’m truly grateful.  BUT, -Jennifer Lopez butt-  there are a couple of side effects that are worrisome, like anxiety and the nightmares I have when I actually fall into something that must be sleep otherwise how could I be dreaming?  They might be hallucinations because it doesn’t seem like I’ve slept in two weeks, except that strangely enough I’m not really all that tired.  But the horrifying, most terrible side effect of all, is the complete lack of interest in writing.  Up until yesterday I was even having a hard time answering emails.  




-later that day


how frigging complicated, huh?  Wah, wah, wah.  The pain is back on my side.  I was just saying how great it was that it was gone, and it's back.  Mother effer.  I knew it would happen.  I received a very minimal dose of the Cymbalta and so it will need to be 'upped', which is how addicts say increased and yeah, I know that's how everyone else says it too.  I hate that word for some reason.  So, I'm worried it will screw with my writing for another two weeks until I get used to it again, but then the pain will not come back and all will be fine and super dandy.  Might I dare to hope that when it is increased it will make me feel that sweet euphoria I felt that first day I was on it?  And by sweet euphoria I'm probably referring to feeling normal.  

Nah, don't worry, I don't know anything about regular but by now I've caught a glimpse or two of normal (which ain't, but wink wink, you know, normal) and I really do want that euphoria.  It was pleasant and really not normal or regular at all, but most definitely what normal should be.

Holy, Moly miss Molly.  I guess the meds are making me a blathering fool, too.  ha ha ha!!  It's OK, folks, because at least I'm writing again. 

Next day... Guess what?  Doctor told me no uppity-up on the medicine yet.  And the pain?  It's gone sugar puffs.  And I still feel like writing. 

Big Smile.

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.

Wait.

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

http://www.liverfoundation.org/