DEFEATED BY ANOTHER BLOW

There is a saying that states there are two sides of the mirror into which we look when afflicted by those illnesses that have the power to kill? I believe that the side that we choose should reveal some ray of hope and control, but death as life is beyond control, and no knowledge or wisdom can change that. Many of our inflictions do not allow choices, as with chronic hep C. We hope that we can be among the lucky ones where treatment provides temporary relief for the liver, that will slow the virus down.
The hep C virus is nothing more than a tiny particle of genetic material enrobed within the envelope of protein and fatty materials. So, how does such a tiny insignificant piece of virus infection cause so much destruction? It is known that this infection causes inflammation, injury and ultimate scarring of the liver and projections show that mortality related to hep C will triple by the year 2015. At best, for now, we will have to learn to live with the virus until scientists find a cure. It is believed by the medical profession that hepatitis C becomes chronic in 55 to 85 percent of infected people.
I was disappointed to learn that last week another research trial that was in its second year of clinical studies was pulled from the market. The current research being tested was another hopeful candidate towards advancement of a potential alternative treatment. No word yet as to why the research was ended and rendered unsuccessful for continued trials. Medical evidence has shown that the race is on for all pharmaceutical companies to be the first one to find a vaccine or a lasting "cure". We know that there are many advances being made with regards to successful eradication of HCV, but a "cure" may take decades to actually become a reality. One day there will be a vaccination to prevent the spread of HCV and to treat those who have chronic hep C. One fact remains, as with all medical research, it is extremely expensive and time-consuming. So where does that leave the millions that are infected and when treatment fails for 3% of us?

CHRONIC VICTIMS

Approximately 85% of people infected with HCV will become chronic victims of this typically insidious disease process. That is a staggering proportion of inescapable odds. The National Institute of Health reports that there are 4-5 million Americans infected with HCV, and it is estimated that there will be 35,000 new cases each year. The unfortunate fact about hepatitis C is that unlike, hepatitis A & B, there is no vaccine against HCV, nor is there a cure, yet. Granted there are treatments that can help "clear" HCV, but there are many, such as myself, where treatment fails. What happens to us? As the hep C virus attacks the liver as its primary target, the virus is spread throughout the entire body, blood & organ systems where it remains actively progressive for the rest of your life. So the risks we are facing when treatment fails puts us at the complete mercy of the chronic HCV. I read a medical journal that stated for those who were non-responders to treatment, "YOU WILL NEVER BE STRONGER AND FEEL BETTER THAN YOU DO RIGHT NOW!" Well that makes me feel so much better. I try not to think about the 12 blood transfusions that were necessary as a result of the failed treatments. I wonder just what the hell I may have contracted through them. I know there are risks of not treating chronic hep C, but some of us have no other options. I have been told to try herbals, fish oils, milk thistle and so on, so I asked my liver specialist about these, and I just got the look. You know that look? I did not ask again. There are some things that no matter how or what you try, the outcome is the same. Not being able to be treated comes with long-term consequences for ones health, but if your body rejects the treatment that's it. I along with other chronic victims of HCV have no other medical options. We live each day as it comes, as we all do. All of us only have the moment we are in. We do not know what tomorrow may bring. We all live life not knowing from one moment to the next if we will be alive or dead. I am not going to let some nasty damn virus control my life. I may have chronic hep C but I will not be a chronic victim.

TRAPPED INSIDE OF ME !

I feel trapped inside of me. Like a caged animal. Anyone feel like I do? At times, I feel dead inside. No way out. Not really caring from one day to the next. I feel like I built a fortress around myself, not going outside for days at a time, seeing no one except my husband and my son. I know this is not normal, but it is all that I have to hold on to right now. I don't have to deal with anything I don't want to. I can control my immediate environment.

I am aware that this is the classic case of depression, I know I have a bachelor's degree in psychology. It's quite a different story when you are the one that slips into it as opposed to it being someone else. One could give the classic lecture on depression, it's stages, how it acts, looks and feels. I think I was just so tired of taking pills that I decided to wean myself off of all my medications. Wrong decision. I actually fought a good battle for a little while, or at least I tried to convince myself I was. In actuality I was destroying myself and it almost cost me my marriage. Thank God I have a man that knows me better than I know myself. He has been through all of this with me, the good, the bad, and the ugly. I don't ever want to know what life would be like without him beside me. I have been blessed with finding my true soul-mate. He is the love of my life and my best friend. FYI-we just celebrated our 17th wedding anniversary.

I think I am feeling so small and insignificant in this world. One day I was a successful business woman and the next thing I knew I was as far as the east is to the west. This was my choice and my decision to walk away from the life I knew and start over. Adjustments? Maybe too many all at once. I know that I made the right decision because I love my new life. Maybe my difficulty is the fact that I don't love me anymore, or I find it hard to like me. I have always believed that you must at least like yourself and enjoy some time alone. It is healthy for the soul. I have a liver disease that I can't control and that bugs the living shit out of me. I don't like being at the mercy of something that has invaded my body and refuses to leave. Know what I mean?
Well until the next time, stay safe !

WHERE THE HELL WAS DEBBIEJO ?

Returning from hell! That's where I've been. I really didn't think I was ever going to blog again. In fact, I haven't even checked the status of my visitors to my blog site in about a year. I must say that I was quite surprised to see that during my absence I went from 1500 readers to 8700. I thought I would just fade away from sight never to be heard from again. Not such an easy thing do accomplish. I thought about blogging many times, I even attempted to write on two occasions, but after a small paragraph I felt blocked and couldn't write any further. It wasn't writers block, it was more like what do I do now kind of thing. Know what I mean? It was just too painful to write about the failure to clear chronic hep C virus from my body once again. As many of you know I had my second attempt at going on the 48 week treatment of peg-intron & ribavirin. Although my second attempt at the treatment was longer, as I was able to make it to 23 weeks, but the twelve blood transfusions within five months rendered my body to the brink of death. It was all I could do to recover from the onslaught of all the damage to my body. It took close to 8 months for my body to rebound back to where I was at prior to the treatment. Depression hit me like a ton of bricks. I was left to deal with all of the classic symptoms of chronic hepC for the rest of my life. Yes, some of the symptoms are managed through the use of medication, while others remain daily battles. Like anything there are good days and bad days. It is still hard to wake up every day not knowing how are going to feel. That is where I am at for the time being. I apologize to those of you I left hanging. I had many heppers who provided encouragement to me during my battle, for those I say "thank you" from the bottom of my heart. It is hard to admit defeat not once but twice. It was my only hope. To realize there are no options left for now, I must pick up the pieces and move on.

DARE I ASK, WHAT'S NEXT ?

What a mind-blower! To discover that my treatment was actually working and killing me, at the same time. What the hell is that? How truly ironic this whole situation is. Just what exactly am I supposed to do now? Wake up everyday knowing that a deadly virus is slowly destroying my liver, and there is nothing I can do? I guess so. Oh what the hell! I can not change one single thing or a moment, can I? On the other hand, that damn treatment is over and I am starting to recover. I had two attempts at the PegIntron & Ribavirin cocktail, over the past two years. As for me, I AM DONE!! I will never go through this again, nor will I ever put my husband and family through this. It is just not worth the pain and suffering we all had to endure. As most all of you know from my past blogs, "I HATE NEEDLES, remember? I knew, that you would! Well, my abhorrence for needles, has only gotten worse from the treatment; (weekly routine blood labs, 12 blood transfusions in 5 months, 2 weekly injections, etc.,) and just the thought of needles makes my skin crawl. I guess the 48/wk treatment wasn't the best option for me, but it was the only option I had or have even now. I am not quite sure how I feel, at the moment. I have been struggling with many issues. My sister is in grave health back east. I moved out west 18 months ago and have been unable to return for a visit. I can not recall a time when I have been away for so long without seeing them. THIS ONE IS FOR MY BROTHER-IN-LAW,(who reads my blog): "Hey Dan, Love you, Take Care!" My sister is far worse than I. My chronic hepatitis C has been a cake walk, compared, to what she has to endure, and what she will be going through the rest of her life, as well. In life you never know what each day holds, or what each hour may bring, and how each second, our lives hang in the balance. There are so many things that are out of our control, and there are times when great pain, suffering, despair and heartache, strikes all of our lives. All we truly have is this moment, right here, right now. As for anything else, well, I guess that remains to be seen. Does't it?

"IT'S NOT OVER, UNTIL IT'S OVER"

Remember the old sayings, "It's not over, until it's over, or "It's not over, until the fat-lady sings"? Well, it is all over, and the fat-lady sang her encore. After six long and arduous months of my 48 week treatment, the second week in December 2005, I was taken to the emergency room with labored breathing and chest pain, lasting over three hours, and was admitted to the hospital for two days. It was at that time, my doctor walked into the room, gently touching my feet at the end of the hospital bed, and told me that he was stopping the treatment, as of that second, and I was to just "STOP" taking all speciality meds immediately. He gave me a promise upon our first meeting and said the following: "I will do everything in my power to keep you safe and as healthy as I can." It was at that point, that he could not keep me safe any longer, although the treatment was actually working. I am one of those 3% of the population of chronic hepatitis C, that develop the severe hemolytic anemia, as a result of the treatment. We tried every angle possible, but of course there are no other options available, possibly at the end of the decade. I was warned that coming off all of the meds would take several months, before rebounding back to where I was prior to starting the 48 week treatment. It has been a very difficult road and now it is over. What just happened? The psychological aspect for me, has been like a wild ride on a roller coaster, blind-folded. I guess there is no way out of this one, is there?

"THE AGONY AND THE ECSTASY" ( PART ONE )

Thanksgiving came and went so fast, I think I missed it. Now, this is the point where things went crazy. I had been utilizing documentation, through the use of a daily journal log. I think it was at this point that I literally crashed. I bordered on the edge for so long, that I became so pissed-off and tired of everyone telling me what I should or should not do, that I rebelled. I refused to log any notes, I shredded papers that I should have saved, I even threw things away that I can't remember what was tossed or what stayed. I threw a week's worth of medications into the garbage disposal, any thing I could think of to take control of my life again. I started spiralling so fast, that things started falling apart in my life. The treatment was robbing me of the will to fight, to not give-a-damn, to be so tired that I couldn't fight anymore. My will had been shattered into a thousand-million pieces. I had made the first 24 weeks (not easily), and had convinced myself to continue the last 24 weeks. Three weeks later I found myself in the Emergency Room, and admitted to the hospital for a couple of days. They thought that I may have had a heart attack, or a pulmonary embolism (blood clot in the lung). It appeared that my body was trying to adapt to the low critical blood levels from the hemolytic anemia, which put strain on other major body organs. This required oxygen and more blood transfusions. What happened next, took the whole roof off. I saw it coming, but denied it's probability. So, if I didn't address it, deal with it, face it, talk about it, then maybe it would just go away. Oh, yes, that will work. Brilliant, idea! Who came up with that load of crap? Stay tuned for Part Two.