Hepatitis C, Harvoni, Changing Karma and Me

hep c viris

The law of cause and effect is absolute. It doesn’t pick a cause we made at random and decide we will pay the price for this particular act and let others slide. It is not the Lord’s will, or his plan for me, that I should suffer for long decades out of my life for the stupid, lack of wisdom, choice I made when I was very young to do IV drugs. What “caused” me to want to do them in the first place? I never even hesitated. The first chance I had to try them, I did. But why? I didn’t come from a family who even kept alcohol in the house and no one in my family – even extended family even smoked cigarettes. Imagine that. What are the odds? But I was drawn to it and jumped in with both feet. It lasted for three years. I got pregnant with my son, now almost 39, and knew he was more important and it gave me the strength to stop. I thought I got away with it. I thought I was one of the lucky ones. Many people can’t stop. Boy, was I wrong. We don’t get away from the effects of our karma – ever.

The karma was there waiting for my family. After I left home for college my father started drinking. Why? Why then? It killed him fast. He was dead at age 54 after several bouts of ascities – the abdomen filling with fluid and long needles were inserted to drain out fluid to make it easier to breathe. He was so sick. He looked 90. At age 54 I had my first attack of ascities. My liver could no longer work. My father’s father also died at age 54 because his body filled with fluid. It went over his lungs and he literally drowned in his own fluid. All three of us at age 54. Same cause, different reason. That is karma. Who’s next?

This is karma. This was something I had to go through. This was one of the lessons I had to learn. Learn it or repeat it. We call into our lives the lessons we need to learn and if we don’t learn what we need to learn and use it in a way to help others and grow into a better person then we do it again.

Here’s an easy example to explain. We draw into our lives the same kind of people until we learn. A woman will draw the same kind of abuser. Or we get the same kind of boss. We acquire the same kind of friends who misuse us. We might even try to move to a different area thinking we can start all over but we end up with the same kind of people in our lives – because we have not changed. We haven’t learned. If we move we carry our karmic baggage with us.

So what does this have to do with the title of this post? It has everything to do with it. First of all I am not dead – and I should be. Many people in my position didn’t make it. Why? Am I more deserving? Would any of you have the foolish nerve to say that God decided to let me live, especially when I absolutely do not believe there is an emotional thinking entity in the universe that singled me out to live? You’d think he would keep alive a person who praised his name and gloried this entity who NEEDS to be praised. Actually, you’d think he’d strike me dead for being so blasphemous. Yet that won’t happen.

Staying alive has not been easy. It has taken much study to learn what my body needs. Undiagnosed pain began in the mid ’80’s when no one knew what Hep C was, so doctors did what they usually did to women -said it was all in my head and wanted to put me on heavy doses of mind numbing anti-depressants. I went through diagnoses of Epstein Barr, chronic fatigue, fibromyalgia, because of nerve damage. Hepatis damages far more than just the liver. The correct diagnoses came in ’98. I’ve been on narcotic pain relief for 23 years although I now keep the dosage at what I think is a minimal dose.

My karma was to do drugs whether I wanted to or not. That has not changed. When I stopped using, my life, my karma, made it very clear that if I wasn’t going to take drugs voluntary it would make me take them. Karma doesn’t have a personality. It doesn’t love us.It doesn’t care about us. It isn’t evil. It doesn’t try to influence us in any way. We don’t have to believe in it. It doesn’t need to be worshipped or prayed to. We don’t have to ask it to come into our heart and “save” us. What it needs us to do is to take responsibility for the things we do and for the effects in our life from these causes we made in this life we have. If you continue to look outside yourself for the reasons for your problems and ask some force “out there” to fix them for you, you’ll continue to wait for a long time. And when it fails you’ll say it must be the Lord’s will. If things do work out it is also the Lord’s will. God can’t lose. No matter what happens it is his responsibility

It is because I accept responsibility – completely – for my life that I am still here. I have survived every single illness and infection this disease has thrown at me from ascites, varicies, liver cancer, ongoing skin cancer, hemachromatosis, lung infections, severe osteoporosis, spinal fracture, 7 rib fractures, ovaries and tubes removed with cysts the size of a grapefruit, every gastrointestinal infection known to man, liver transplant, spinal surgery and a lot more I don’t even remember – ALL BECAUSE I CHOSE TO DO IV DRUGS WHEN I WAS 20. I am now 61.

This is the karma I created. Do I let it beat me? Should I feel sorry for myself? Please, do not ever say you are sorry that I have had to go through this. I am not. This is a benefit. This is an opportunity that presented itself in this lifetime that I am changing. When negative things happen to you, what matters is how you handle it – your attitude – the new causes you make that determines whether you change it or perpetuate it. Do you accept responsibility for everything that happens in your life or do you say some things are not your fault – you’re a victim – you didn’t do anything to cause it – it was just bad luck? Everything happens for a reason whether you want to believe it or not. To understand the law of life is worth all of it. It’s a whole lot easier to not accept responsibility for our lives – to say it’s God’s will because that is something someone taught you to believe and you’re afraid to question it or you might piss him off. So many people need something else to be responsible for their pain.

So now, the latest in my fight against this disease is the drug Harvoni, tried first with Ribavirin, but it lowered my red blood count where I wasn’t getting enough oxygen and can barely walk across the room and I’ve been nauseas 24/7 for 7 weeks. Some people breeze through on this drug, but for me everything I’ve done to stay alive has been a major fight and hard won. If there is a side effect, I will have it. This is a hard, deep karma. Once an addict always an addict and anyone who has ever fought an addiction that sets out to kill you knows that it always owns you, no matter how far you try to run from it. If I had won over it I wouldn’t be taking 20 mgs of methadone every day just to cut the edge of the chronic pain I have.

Harvoni is my best chance of living. Hep C will eventually kill my new liver. Then I’ll be too old for another transplant. I wouldn’t survive it anyway. Harvoni works for 95% of those who take it. That is great odds, but still, 5 out of 100 don’t get cured. What happened to them? No one talks about them.

I feel I’ve done everything I could and I stay optimistic about my future. I have much to do yet. I still have dreams and goals to meet. I will live every minute of my life and work to make a difference in people’s lives. My life matters. I am still a mother, a grandmother, and I am still wonderfully, appreciatively a daughter and a sister.

I have said in other posts, “The only legacy we really leave behind is the effect we had on other people”. That has been my goal in life – to be a positive effect on people. To give them hope, strength and encouragement to change their lives and become happy. Those things are found inside you, not “out there”.

http://facebook.com/jamielifeinprison . . .Blog posts and news about injustice in the world

Sonni Quick piano music complete list

Living in a limited world

……Earlier today I posted about my chronic pain and tonight I saw this post. The two seemed to go hand in hand. I understand chronic illness and chronic pain. Other people can understand and sympathize and it is appreciated, but until you know what it is like to have your health fail and you can’t change it, and there is no day you can take a break, you can’t really know. I understand we all have things in our life it we wish we can change, don’t get me wrong. With any of these things we can deal with them negatively and become victims, or we can find a place where we use it for positive growth and become better people. That is the one choice we can make.  How we deal with it is a conscious choice.  Each choice gets a different effect.  You can always find something good in the negative.   It may take awhile, but it is there.  Being housebound, as she says can also be a sanctuary, where some may think of it as a prison. Both ways you are still inside the house.  I was housebound for several years as I battled my illness. I’m doing better but I know my limitations and I push those limits.  When I looked my own mortality in the eye,  I made a choice that no day was to be wasted.  It’s like running that extra lap. I haven’t had a chance to read her other blog posts yet, but I have a feeling it’s going to be just what the doctor ordered.

Two Rooms Plus Utilities

The truth of our worlds?

I started writing this blog in 2011, I suspect like everyone else when they start to blog believe that it will be just a few lines every now and then, the truth has turned out to be something else completely. I am in my 50’s but I was just 21 when my story really began, although it took nearly another 20 years for the doctors to work it out. When I was a child I thought a good life meant that the sweetie jar was always full and no one told you when to have a bath, it’s odd how the life takes hold and nothing is ever what you first believe it to be. I chose the picture above to sit here as it is all about belief and is truer than most think it to be when they first look at it. Take a good look and ask…

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The Ongoing PAIN of Hepatitis C


I haven’t opened my eyes yet, but I am awake. The only thing my brain registers is pain. I just lay here and feel where the different pains are coming from. It’s hard to tell. It comes from everywhere. Last night I only took 5 mg of methadone, half my normal dose, about 11:00 and I wonder if it would have made a difference if I would have taken more. Probably not.  I’m trying to again to cut down because I don’t want to take it anymore. I don’t take a high dose anymore but I’m just plain tired of taking pain killers, but the pain has worn me out. That is the nature of addiction.

My body hurts. Living with pain is hard.I have to find a way to change this. I’ve been saying that for too many years. If you suffer from chronic pain you understand what I’m talking about.  I am really, really, really tired of this.  Pain pills can be a nasty roller coaster ride that can get out of hand easily and I’ve rode that ride a long time ago so I am very careful now.  Right now I would have to take a lot more pills than I want to, to get rid of my pain and I’m not willing to go there, so now I only cut the edge.  Sometimes I let it get the best of me and hang my head and cry.  Then I suck it up and keep going.  I put a smile on my face and you would never know.  Except my husband knows.  He says I don’t hide it very well.  He knows what it costs me to cook him dinner every night.  He also knows I need to be able to do it.  If couldn’t do the simple things in life, then I’d have to admit defeat.

I feel the pain in my head. Sharp, dull, burning. I feel the burning in my eyes. Pain in my neck if I try to move my head. It hurts to breath if I tense my muscles to sit up. I can’t sit up; not just sit up from laying flat. I laid too flat while I slept. My spine doesn’t like being straight, laying down, sitting, or standing. I have to turn on my side and slowly push up with one arm.  My arms ache and my legs and feet burn.


So I take my morning dose of methadone and lay here and wait, and wait.  I feel each pain and think about how each one feels.  I acknowledge  it’s presence. It’s been part of my life for so long I don’t remember what a pain free life would feel like.  I sometimes have short spans when the back pain leaves, but that happens only when I am inactive, laying back on pillows, and it’s hard to do the things that are important to you if all you do is lay in your bed.

The symptoms of Hepatitis C are insidious. I stupidly contracted it during a period of my life when I thought bad things only happened to other people; forty years ago.  Welcome to the stupidity of youth.  You don’t really know how senseless you are until much later, but suggest that to a young person and they will get rather up in arms and quite indignant while declaring how grown up and mature they are.  I know what I’m talking about because that was me.

Symptoms began rearing their ugly heads twelve years into this roller coaster of painful realities. It took a long time to get a diagnoses because doctors didn’t know anything about it. Typically, because I am female, in those days if a doctor couldn’t find a reason for your problems, all he wanted to do is give you anti-depressants as a cure all for everything.

If there was anything I could teach you, if you are abusing your precious life; if you think alcohol, cigarettes and eating bad food are worth the consequences, and if you tell yourself “You gotta go somehow”, and you are willing to pay the price by giving up your life you are going to be very very sorry. Because you NEED that shit so much, and you don’t love your life enough to stop, the end of your life will be one you wish you could go back and do things differently before it’s too late.  I’m not telling you something you don’t already know.  You just don’t understand the meaning of pain.

hep c viris
photo source: hepfi.org

I came as close to death as possible without dying, so my doctors told me, after my liver transplant. But the cirrhosis of the liver had destroyed my bones by sucking out the calcium.  My back fractured and 7 ribs and my vertebre aren’t holding up.  I’ve shrunk 2 1/2 inches.  That’s a lot.  If I were are 90 it would expected that I would shrink or get stooped over, but I’m not 90. I have 2 herniated discs because my osteoporosis is so bad it doesn’t register even on the bottom of the chart – all because I was stupid and shot drugs when I was 20. My invincible years.  See how cause and effect works?

Don’t get me wrong. I don’t allow my pain to stop me from having a life. I have dreams. There is so much I want to do. I can’t let this stop me. I push myself. When I get out of bed I have about 45 minutes of vertical time, so I move fast and do what housework I can do before the thoracic- mid back- starts feeling like I’ve been struck by a hatchet. My best position is bending over, to curve my spine, so working in my garden is a pleasure. To bad I can’t spend the rest of my life looking at the ground.

I usually have a piano student on most days. I love teaching. Music has been my life since I was a child. My recordings are all over my two blogs. But . . .playing the piano creates pain that takes my breath away. I usually continue playing until making it to my bed is difficult. The first time I lay back, propped up on pillows I wait 30 minutes until it subsides. Then I can get back up.

Each time I lay down, my time up gets shorter. I stretch my back and neck. I do pushups against the wall, stretching my back in and out between my shoulder blades. I ready left and right into the pain. This stimulation buys me a couple extra minutes of standing. The pain radiates so intensely is hard to breathe. Cooking dinner usually puts me down at least once or twice, although I can’t always always stop when something is on the stove. I have to push through it. Sad thing, I love to cook, and my husband loves my cooking and tells me every night how wonderful it is and the pain is all worth while. Last year I tried canning peaches, salsa and spaghetti sauce for the first time. That takes a lot of standing. It almost killed me but the results were worth it.

After dinner I’m done. No more Getting up at all except briefly. It takes only one minute for the pain to be bad. Now I take my second dose of medication. Pain killers do not work on this kind of pain at all, which is why I don’t take any during the day. The only thing that works is to lay down, but is hard to have a life laying in bed using a Nook to work or entertain myself. I use a heating pad, lidocaine patches, a tens unit ( electrical stimulation) that has four pads that are stuck on the skin of my back and the controller is attached to my waist. It helps a little earlier in the day. I also wrap a five inch piece strip of elastic around my torso with velcro as tight as possible. I don’t do all these things every day. Nothing is effective very long.

spinal cord stimulator
photo source: medtronic

I’ve been told there is nothing that can be done to fix this. I’ve had three rounds of physical therapy and two shots of steroids. No help at all. The thought of living with this for the rest of my life? Let’s just say, it’s hard. Some days it gets to me. But I refuse to let it stop me. It slows me down, but then I work in bed.

On August 5th I am having and having a Medtronic spinal cord stimulator inserted up my spinal cord that will generate electricity internally to confuse the brain. It doesn’t fix the problem.  It tries to keep the pain signals from getting to your pain first. It’s hard for the brain to process two different sensations. That is why we joke when someone has a pain and we ask if we should stomp on their foot so they can’t feel the other pain. Or when a child falls and hurts himself what does a mother do? Instinctively she rubs it. The brain feels that sensation more than the pain. The stimulator does the same thing in a bigger way. The surgeon will insert a pacemaker size instrument in my abdomen and run a cord up my spinal column up above T6 where the damage is. That’s pretty high up. The last two inches is about a half inch wide. That is where the electrical stimulation comes from. I will be able to regulate the intensity with a handheld unit.

It’s my only hope. I don’t want pain anymore. I want to get off this ride. I doubt this thing being put in can take away all of my pain but I’ve read success stories that it has reduced it and made it more manageable. I also have a friend who had one put in several months ago and it enables her to get out of her power chair when she’s at home.

There is a reason I’m still alive. I know that. Through this I learned that no day should be wasted. Every minute of life counts. Fill it with things you enjoy doing. Stop doing things that are a waste. Stop doing the things you hate, or the job you hate and have the courage, the guts, to do what you love doing. Life is to short for anything less. Take control and move forward.

I have no illusions I’m going to live to be a rope old age. There are too many long term complications from a liver transplant because of the medications I take and because the Hep C is still alive and kicking. What that means to me? Don’t waste time. I’ve had three extra years so far. Years I shouldn’t have had. Was abusing my body 40 years ago worth it? Are you abusing yourself or are you wasting your time – your life? Or has going through this taught me things I otherwise would not have learned?

If you have read this entire thing, thank you. One way for me to distract my mind from pain is to write. Time to get on with my day!