Crying time

[rjs]

How do we get out of these phunks???  I feel like I am being swallowed by this huge treatment monster.  He serves me a smorgasboard of sides every day and holds me captive.  Yes I am taking my AD's and more...

I am walking every day, even rode my horse once (even though my body feels like it has been through a meat grinder)  Back to work 30hours... barely hanging... literally one foot in front of the other.

phunks before meant a trip to the bar and some dancing.... that is no longer an option,

I feel like I am losing myself and being redefined as the person on treatment... I just cannot explain. It is like watching your life but not really living it.


Sorry to be such a downer!

rjs

[ipaqgps]

rjs,

I am thinking it is a one day at a time, maybe even one hour at a time kind of thing. You are doing things that are good for you. Don't even know how you managed riding your horse. You post here and use this forum so well.  You give so much to others in support.  You are putting one foot in front of the other and you will soon be there.  The phunk is only for a while longer...

Hang in there and laugh at that monster who is being assaulted right now.

Hepper Hugz
ipaq
 

[greyrocker]

rjs, sometimes we just have to find something to be grateful for to get us out of ourselves. I think ipaq nailed it when she said that you give so much to others. You could think about that and maybe find that feeling good about helping others here eases your burden and stills your troubled mind.

Narcotics Anonymous has a "Gratitude Prayer" that goes like this;

My gratitude speaks
When I care
And when I share
With others
The NA way.

So, substitute the HCV way for the NA way, and you have a nice little mantra for when you're feeling beat up. Maybe it will make you feel a bit better.

Just remember, this too shall pass, one day it (Tx) will end...I promise!

Hang in there kid, we're right here for you...I promise!
 
greyrocker

[DjTurtle]

rjs,
Here is something to be thankful for: it is only 24 weeks!! ummm .. I went through tx 4x and the last time was for 72 weeks. This too shall pass!
DjTurtle

[sweet sue]

rjs,

I think a lot of us felt like you do while we were on tx. As for me, it did change my life. I have become more compassionate (which I always was but never showed it much). There was always two sides of me but I only showed the strong, independent, under control part of me. Look at me now.

So as you try to cope with the horrid sx, remember that you are a few short weeks of becoming a bigger stronger person then ever. You may be on on your knees now, but it won't be long until you recovery from this mind tripping tx and standing tall.

 

sweet sue

[greginky]

A lady i dated in college once told me that when you feel like throwing in the towel, don't, take that towel and wipe your brow and get back in there and fight another round.

[sweet sue]

OOOhhh, that's a good one Greg.

ss

[Hop]

rjs,
Boy, I sure hear you with your mid-treatment exhaustion.
When I was at about 30 weeks I, too, had a very complicated time of it.

I found that if I could just try to keep sight of the fact that
while I had to continue to fighting the virus,
I needed to stop fighting the treatment - to allow it to help me,
and not get frustrated by my limitations, that my spirits, if not my body, were much better.

I also understand about reinventing one's self.
In fact, I wrote a newsletter article about it earlier this year, which may still be saved in the archives.

In it I said that even before I began to treat, I had to become someone else. Reinventing myself as someone who has to fight for every crumb of doctor care and insurance that I was entitled to. After I began treatment, and certainly not by choice, I had to reinvent myself yet again; this time as some who was dealing with the side effects of very strong medications.

Although optimistic, good humored and sunny by nature, I now had the time to both mourn the person I used to be and try to celebrate the person I have become. Friend’s called, wanting to get together, joking and needing me to assure them that everything is normal - but all I could think about was my shortness of breath, and how long I could talk without getting too tired.

If I've learned anything new from this it's that, good or bad, every day is a new day, full of new unknowns, new challenges, new successes. I've also learned not to be so fearful of the unknown, and to be as actively accepting as possible.

There is one thing that remained consistent, which is how unpredictable life had become on treatment.

HCV is a chronic illness: its power to hurt lies partly in its persistence and longevity rather than in its severity. If you can accept that it is there, treating it becomes just another complication; something to manage - like eating well, exercising regularly, and working for money - alongside what else you personally consider to be meaningful in life, such as riding your horse. And then it's not so bad.

-Hop
 

[lynn]

RJS, so sorry you are having a rough go. But just remember, this too will pass. You are going down the other side of that mountain and before you know it you will be off the treatment and the sun will shine again. Not only will the sun shine again but you will feel better and better and look at life in a much different way. Coming off treatment is a wonderful feeling. There are so many on this site that have been on treatment so many many times and still fighting. You are strong. You will be OK...better than OK!

[jimmer]

I just finished reading "Still Standing" The story of SSG John Kriesel who lost both legs from an IED. It sure made me think how much harder a battle others have been through. Gave me a new attitude wish I would have read this book months ago.

Hang in there rjs, you can do this we are all here for you.

jimmer

[greyrocker]

rjs, this is for you.

http://www.youtube.com/watch?v=cI_0Hyn57Lk&feature=fvst

GR

[rjs]

You guys are the best.  I have just felt so lost lately, like I am just watching myself go through life.  Sometimes I feel like a hypocrit telling others it will be o.k. when I am asking myself... Will I really be o.k.?

Jimmer.. I will check out the book... good thought. I know others have it soo much worse, sometimes the pity just overtakes me.
DJ Turtle - You are my hero, I just do not know if I could do this again.
Greyrocker - love the mantra, Stand by Me... I just cried my eyes out in a good way! Thanks.
Sweet Sue- love the icon with the wand.... soo cool... so you!!  That in itself made me smile.
Ipaqqs and Lynn - Your words mean a lot and I will try to find my sense of humor again, brain fog 

Hop- omg , you nailed it on the head, it is like I am in mourning for my old self.  Wow that really hit me. I know I will never be the same person.  Fighting this treatment is not working, you are right, I have to accept it as  part of my life that is necessary.  I would love to read your article.  It is so weird, it is like just walking down the path of life with very little direction because so much is unknown.  I just hate having something have soo much control over my life. 

Thanks Guys,
I will keep pushing through

rjs

[rjs]

Greginky,

Picked my towel back up, problem is I want to slap someone with it!!!! Is it riba rage? 

rjs

[banarep]

Sounds like it.

[pixie]

If need be take this hour by hour you will see this thru....

Letter to an HCV patient written by a Consultant.

"Your attitude about the treatment and its effects on your body is going to be essential for success in this. And this is not cheap psychology, because I know that wouldn't work for you. I know this whole situation stormed into your life as a very unpleasant and unfortunate surprise, but I just want you to see things, and understand things, as they really are.

When you talk about "all these horrible drugs..." they've been injecting into your body every week, and talk about them as some kind of toxic poison, I'm not sure you're being fair. I'm sure you know what interferon is, but let me give you my perspective. Interferon has not been created by the hands and minds of men. Interferon is a cytokine - one of the most potent inflammatory mediators we know, which regulates several aspects of our immune response and is essential for our defense agains all kinds of organisms, including viruses. It is a strongly preserved molecule from an evolutionary perspective, being present in most vertebrates. Our lives would probably not be possible without it. The forces of nature forged this intricate molecule millions of years ago and have preserved it since. Interferon was "discovered" somewhat by accident (as most great discoveries) by two investigators from the National Institute for Medical Research in London back in 1957. But the full therapeutic potential of this substance did not become apparent until very recently.

When I started medical school, in 1997, I remember seeing patients in the hepatology clinic who had viral hepatitis and discussing with my colleagues how unfortunate it was that patients with non-A, non-B hepatitis (the hepatitis C virus was isolated only a few years earlier, at the CDC, by the way) had absolutely no treatment options. It killed me to see those healthy, productive people, otherwise full of life, having to cope with a disease that just could not be treated. But that did not last long. I remember this bright young hepatology professor at my medical school pulling me aside one day in the cafeteria to tell me about this new international multicentric clinical trial which was testing a very promising new drug to treat hepatitis C - a drug called InterMune-Infergen (interferon alpha). I could just see the excitement in his eyes, and how contagious it was! That was the very first medical project I was involved with, and the reason why I became what I am today. When I think of Interferon, I think about a miracle made possible by science. It warms my heart, fills me with passion, and makes me want to come to work every day.

It's interesting that in the same phrase you mention "these horrible drugs", you also talk about a "stupid virus". The stupid virus you speak of has plagued mankind for thousands of years, probably dating back to pre-civilization. This stupid virus, against all odds, has found ways to adapt, mutate, and survive within the heavily protected human body and to infect other organisms, spreading to all corners of the world colonized by human race, in an almost unprecedented way. It is interesting to think that, if the mode of transmission of hepatitis C is pretty much exclusively by blood transfusions, needles etc, how was it able to survive as a species before modern times (before blood tranfusions, injectable drugs, surgical procedure etc even existed)? Some speculate that there is one answer: war. Through wounds that occured in battle, warriors from all cultures would pass on the virus to their surviving enemies. A virus that only exists thanks to our bellicose, unforgiving nature? our ambition? our thirst for blood? How ironic that is! Nature has such a dark sense of humor, dont' you think? There are many terms that I could use to describe this virus; "stupid" is not one of them.

Regardless of its origin, there is a constant battle between our own inner warriors (the cells of the immune system) and this allien enemy race. Most of the time, our troops are able to contain the enemy to a few sanctuaries, but are unable to erradicate it. I find it interesting how stories repeat themselves at so many levels of existence. Few resisting against many, hiding behind dirty strategies and guerrilla warfare. I like to think of Interferon as some sort of Holy nectar capable of transforming regular soldiers into Spartan warriors. Fierce fighters on steroids! A substance designed by the creator himself and stolen by men through reverse engineering.

Most of the side effects that you feel are due to this war that is going on inside of you day and night, at this very moment. Your body fighting off the intruders. An army of enemies being destroyed in an epic war of a microscopic universe within your veins. You don't feel any "side effects", what you feel is the heat of battle. And that should put a smile on your face. Every day."