The Ongoing PAIN of Hepatitis C

pain

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.

pills

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!

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