Barbara55's Journal

Below is a Hep C article my husband found that I'd like to share with you all.  It will seem long b/c this journaling area seems so tiny - but please read it anyway...it is a wonderful article for anyone currently on treatment, considering treatment or declining treatment as well as for those who love someone who is currently in treatment, considering or declining treatment. 

Life after Treatment - By: Angela J. MouroBackSummary:

A former patient offers perspective and encouragement four years after clearing hepatitis C

 Story:There is a song that my favorite diva sings. It’s from “Funny Lady,” at the end of the movie when she realizes she is over someone whom she thought she loved. It’s called “Let’s hear it for me.” I remember when I was at the very tail end of treatment I played it over and over again – and I mean loud. I am certain I annoyed the neighbors but this was my day. I remember one line that I identified with and felt belonged only to me: “All my troubles fill a thimble; I am happy as it’s legal to be.” I made that song my anthem.  I applaud all those who have attempted treatment, whether the result was clear or not. We are strong people just as others are that endure any illness. This disease deserves to be studied further and funded more.  I have been clear of hep C for four years. With a genotype of 1A, imagine that. I was treated for 48 weeks – three needles a week and four pills a day. This time of year, knowing my anniversary is here, I find myself being grateful to my God, to all of you, to those who were there for me day in and day out while I was on treatment and to all those that I don’t know personally who suffer from the dragon. I do not know what it is like to suffer from the symptoms of hep C, but I do know what it is like to suffer the side effects from the treatment. The hair loss, that unique color of gray on our skin and the brain fog were very scary. I specifically, on shot days, never thought of clearing the virus. All I consumed myself with was getting through treatment. In retrospect, I now see how obsessed I was. I just wanted to get through the 11 months. I have apologized to those around me, but I truly could not be there for them. I was just barely getting by myself.  The entire experience has made me a stronger person. I do not know if that is good or just plain pathetic. But what I know is, I am all the better for it. I think of those I know and those I don’t know when they take their shot and I smile. It is those people that I admire. I know a lot of people who won’t even consider treatment because of what they hear about the sides, not realizing that it affects everyone differently. I feel for anyone who suffers with any illness; I hate to see people suffer. My faith leads me to believe we were chosen for a reason. Who knows why? But one day we will all get to ask our questions. I don’t think of hep C every day like I used to. But when I do, I have a rush of feelings on the topic. It’s funny: It’s a disease that gives many a second chance and it affects an organ that can actually repair itself. So to me it’s not just a disease, it’s a wake-up call. We all need wake-up calls, all of us. It does put things in perspective for you. That I know for sure. Some stay awake for the rest of their lives. Others discard what they thought was important to them. Whichever group I fall into, nonetheless, I will always be grateful for getting through treatment and staying clear.  I know the whole spectrum of what hep C causes and I was fortunate in many ways. I did not have to go through the torture of trying to get disability. I worked for myself, so I did not have to fear losing a job or explaining to bosses that I could not mentally keep up due to the brain fog. This treatment and/or other illnesses can disrupt our lives. Unfortunately, it takes a toll on our caretakers. They feel cheated and only now do I see that. My hat goes off to those special people that love and care for us enough to just be there. I had the pleasure for a brief time to be a hep C counselor, and that is how I came to see how hep C affects those who are infected and affected. All I can say to the caretakers is do the best you can, just as we are while trying to get through treatment. I found a lot of solace from the moment I was diagnosed to this second through friends I met with the disease, through hepatitis support groups and through chat rooms – chatting with absolute strangers. We spoke the same language in every way; we just “got” each other. So reach out – why go through it alone? Talk to people who know what it is like to walk in your shoes. We share a bond, and I loved knowing and feeling that. I keep in touch with many who I have met along this journey. Around the holidays or just any other day of the week, we drop a line reminding each other that we will never be alone with this. There came a time when I had to detach a bit from it all. I wanted my life back as I knew it before I was told I had hep C. Yet it is and always will be with me. I feel, look and think differently since then. I know it has changed me in many ways, some good, and in other ways not too good.  I wish from the bottom of my heart that those of you reading this will be good to yourselves and to those that love you. For those that do clear the virus, always keep coming back and lend a positive hope for those who have not yet cleared it. Don’t feel bad about standing up and saying that you are clear. People need to hear this; it keeps them fighting harder. I love to laugh, so for those who can’t find a reason to laugh – laugh anyway, even if you have to laugh not to cry. In closing, I will end this how I started: Let’s hear it for us. 

Editor’s note: Angela Mouro’s first My Story article, “Surviving on Treatment,” appeared in the July – August 2001 issue of Hepatitis magazine, shortly after she successfully completed interferon/ribavirin therapy for hepatitis C.

I try to remember that in many countries around the world the word they use for "problem" is "challenge" - Every problem we have, no matter how grave, has the gift of a lesson somewhere inside - maybe it's not evident to us as we're going through the challenge but if we're open, we can almost always see the lessons once we've gone through it as we look back. The lesson may be patience, faith, surrender to "what is" - these are all very simple ideas, not easy at all, but simple. Let us all try to remember that part of the agony we face when going through these challenges is our resistance to them - when we focus on "why me?" "why this?" "why now?" "what did I do to deserve this?" Then...we have a choice of course - but then often we start to blame: we blame life, God, our ex's, our children... we begin to have, as Eckhart Tolle calls it: "a moral indignation to reality" - meaning that whatever the situation is that we're in - is exactly where we're supposed to be - we need to surrender to what's happening right now at this very moment. Some things we can change and we should, some things we can't change and when that happens we need to breathe deeply and say, "Okay God - here I am, you've given this to me - what do you want me to do next?" When we resist where we are and start the negative talk like: how dare the "world" "God" "Satan" "(fill in the blank)" do this to me - we can only feel resentful, angry, depressed and sad. ...and we will not find the lesson if we stay angry, resentful, depressed and sad - not to invalidate those feelings: they are real feelings, it's just that the longer we dwell in that place of blame, the longer it will take us to see the lesson - and that's the goal right? What do we learn from this? If, as many religions around the world teach, that God is everywhere and everything is God, then this challenge or difficulty or "problem" we have been given is also God - It is God's way of tying to teach us something important. The bigger the problem, the bigger the lesson...in my own life, I've noticed that when I don't deal with something, it just seems to come back to me again and again - maybe in a different form but it still comes back (usually bigger and bigger too). I had several jobs over a 15 year period in which every boss was a jerk and picked on me, I would stay and stay, then I'd leave and get another job, and my new boss would turn out to be a jerk too, so I'd leave that job, again and again, after around the 4th job, it dawned on me that I kept changing jobs but it seemed like I was always working for the same exact person (they just looked a little different, that's all)...was there a lesson here? The only common denominator was me...so what was the lesson? ...to let go of being the victim - of taking everything personally: a lesson that began when I was born into my particular family. As soon as I got the lesson I was able to start working on not being the victim and checking myself everytime I started to take something personally - it's a long process that I'm still working on, but I've gotten so much better. Still in a moment I can let my guard down and suddenly someone or a situation appears in my life that I feel victimized by and then I remember, "Oh yeaaaah...this is one of my lessons, to not be a victim" and then I get back to work. I never forget to stop myself when I start to feel a "moral indignation to reality" and I say to myself, "Okay so this is where I am now, God - what do you want me to do next?" love, Barbara