Tuesday, February 14, 2006

Relief and the final chapter

Had a lovely day today. It really made up for yesterdays awfulness.There is something very strange to self control. Being a "professional" deprives you of certain rights. You cannot call people on their behavior. You must remain aloof and above the silliness, even if every inch of you is screaming.
What was wonderful was how completely supportive my manager was. I am lucky to have a manager who is close enough in her career history to remember the bedside and it's challenges.
She wants us to be successful but I am not kidding myself here..the less we lose our minds, the less crap she has to clean up.So it pays off for her to be supportive. I would not want her job, she has a huge staff , doctors , upper management and a budget all to manage, it's a nightmare.

So the final accident: I was at work and was turning a patient and got a weird seconds long sharp pain in what I thought was my hip. It went away and I forgot about it until the next turn. It began to plague me, my leg began to be painful all the time, finally I started to have pain so overwhelming it left me screaming. I went to the ER where they filled me with drugs and sent me for an MRI.
I had ruptured two discs and worse a part of the exploded disc was trapping the nerve..this was what was causing the pain. Everyone wanted to treat the problem conservatively, my family doctor, my neurologist and my neurosurgeon.
I was sent to the Pain clinic and started on oxycontin. I hated it. I have always had weird reactions to pain medications and the oxycontin was no different. Because it is a synthetic morphine( all narcotics or opiates are broken down by the body into morphine) the "synthetic" ingredients made me itchy, agitated and full of a feeling of foreboding and doom. The hair on the back of my neck would stand up hours after taking it. It made me so anxious the pain was worse.
So we stopped it and started Gabapenten. Gabapenten is an anti-epilepsy drug that has a side effect of relieving neuropathic(nerve) pain. Because what I had was nerve inflammation it was a life saver for me. I was switched from the oxycontin to real morphine and a muscle relaxant and a anti depressant were also added.
Anti-depressants also work on nerve pathways, they can soothe irritated and irritable pathways helping the gabapenten do it's job even better. Because I was having grotesque charlie horses the muscle relaxant was added. With my cramps there was no actual muscle contraction, the nerve itself was sending out the message of charlie horse, so even though the muscle wasn't contracting my brain was receiving the message that it was. The muscle relaxants did nothing and were soon stopped.
Obviously I couldn't work, at this point I couldn't walk farther than the bathroom and I couldn't sit or ride in a car. To see the doctor I would have to near anesthetize myself to make it.
I was a zombie, literally drooling...my husband would lean over and wipe the drool and my tears.
I cried a lot, every day.
My pain specialist was an asshole who thought my MRI was mild and easily recoverable. I just needed a "little steroid" . The way to get that steroid into me was to inject it into my spine.
I went to the little mini OR and lay on my back with no sedation and the only pain medication was what I took before I got there. The doctor injected through a large needle into the epidural space.. steroids.
The first time I made it home before I got so sick I thought I was going to die and honestly I didn't really care. I could feel my breathing get shallower and shallower, my temp spiking,shaking and sweating like some junkie detoxing after ten years of heroin abuse.It lasted three days and when I came out of it I was happy to be alive but my pain was unchanged. It had now been three months.
I was waiting for disability to start, waiting for workers comp..knowing that soon my income would be cut in half.
I was desperate so I submitted to my second epidural, it was a terrible mistake that landed me in the hospital. I was allergic to steroids. I was lucky I hadn't died.
I bounced back and in my ever increasing desperation I began to try whatever drug my doctors recommended.
I had good success with gabapenten, it's side effects are generally benign. You get fat and you suffer with "brain fog". You feel mildly confused and weirdly detached from your surroundings,I was clumsier than I had ever been but honestly the trade off was worth it.
I added Topamax, a drug that works like gabapenten but helps you lose weight not gain, it had better research, better clinical trials. Within three days I had sunk into a suicidal depression, a known side effect I ignored. It was the longest twenty fours waiting for that drug to wear off.
The depression was so acute and so bizarre because intellectually I knew my feelings were ridiculous and drug induced but still the feelings were real. I alternated between laughter and sobbing,wanting to die and feeling incredulous at the very thought.
It was now six months in . I had found a balance with three drugs and was now completely unwilling even rigid about trying anything else. But I wasn't getting any better and every day I was losing more and more mobility and still unable to work. I went on like this for many more months until my neurosurgeon finally re-entered the picture for a follow up appointment.
He was blunt, I had failed conservative treatment and I could not avoid nerve rescuing surgery.
The surgery was a piece of cake. The recovery is still in progress three years later. I am back at work again but my pain is a permanent partner. We waited too long and the damage can not be reversed.
Chronic pain
chronic meaning all the time, I am never without pain. Think on that.
My pain is a sensation of being burned . If you have ever had frostbite and the sensation when your skin begins to warm and then overwhelming burning begins and then thankfully for you it ends, for me it just goes on. The drugs turn the volume down. It hurts but not enough to stop you. Since the surgery I have been freed of my worst pain, the charlie horse, it would make me scream and it happened almost every day until my surgery and has never happened since. That is why I say my surgery was a success. Sometimes all a doctor can do is fix the worst of it, you have to learn to come to terms with what is left.
I think I have come to terms with dignity and perseverance. I am damn proud of how hard I worked in physiotherapy to be able to reclaim my job.
I am also deeply thankful that my manager and my hospital had faith in me and took me back when I said I was ready.
So, that is my disaster and this is my adventure. Trying to make the best of a life with chronic pain. The wonderful people at brainTalk were a huge part o my recovery, they reminded me that suffering is universal and to be blunt about it..it's boring. Surviving and reaching out and helping is where it all gets interesting


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