The Double Edged Sword

double egd sword

My sister went with me, a few years ago now, to an insurance assessment (for want of a better word)! And I came away needing to do eleventeen blood tests and pee in a bottle etc. I also came away feeling angry as I believed this meeting was supposed to have been to assess the level of disability I suffered from the nerve damage, acute chronic neuralgic pain syndrome, epidural fibrosis, hypersensitivity and arachnoidosis (due to two failed surgeries – this is in a nutshell). I wasn’t supposed to be diagnosed again, surely! Why hadn’t the specialist received the right instructions as in: this is an assessment not a diagnosis – we know she’s fucked we just want you to tell us by how much. So he tests and pricks and squeezes and listens – asks a million questions and of course, being paid by the insurance company the implication is that I have had pre-existing conditions and that I was susceptible to this nerve damage = no pay out for Kait – no way to fix Kait – permanent and inoperable – Yippee for the insurance company – bad luck for me.

Anyway I kept my cool, I went for those tests, to more doctors, more reminders of how hard it is to get around, how dependant I am in certain circumstances, how limited I am – yadda yadda yadda. My sister takes time off from work again to take me to the second meeting which we have had to wait 5 weeks to get. We are shuffled into his office and he slowly goes through all eleventeen tests and …. all of my tests have come back clear.

I have always been fit and healthy and I have always known that I have never had a pre-existing condition. This is what they tried to do with me 17 years ago when I had my first treatment injury. I was supposed to have microsurgery – that’s what I signed for and what was explained to me by the registrar. I had a collapsed lung at the time so it was serious.

So I go into surgery and a practising thoracic surgeon who is not qualified yet, butchers me and gives me a major thoracotomy – stitches the tubes into my nerves in my lung . Then the tubes that drain off the excess fluid from your lung as you heal, must be removed after 3 or so days, the nurse pulls it out in one movement as you breathe out and supposedly out comes the tube….and yes the tube came out, after it was yanked so hard the nerves were dragged to the outside of the wound from the tube placement. Long story short – I am sent to hell. I never really got back. I am given several epidurals up and down my spine, Pethidine shots and all sorts of crap to control it. Apparently I almost died.

In order to be able to get home after 17 days in ICU I end up on mountains of heavily monitored medication like methadone, fentanyl, gabapentin, and loads of other stuff to just keep me like a zombie. So now it was a living hell, no medical support. I weaned myself off all of that shit over 5 years and they had told me I would be on it forever – that I would be an invalid for the rest of my life. I wasn’t that kind of person so I healed myself, taught myself, coped myself – with no support whatsoever from any medical background, just my amazing family who had to put up with me. That was in 1998 and then another failed surgery in 2013.

But what was interesting was when I argued that I had signed for minor keyhole surgery in 1998 I was told that because of my history of endometriosis the surgeon had to perform this open major surgery. Another scapegoat situation. I have never had endometriosis in my life before or have ever been diagnosed with it. It didn’t matter what I said I was stonewalled and back then just wanted to get my life back. No one guided or helped, they just left me hanging.

The implication I have been living with for the past two years has been also to try and identify that I had some pre-existing condition…but no, nothing, no heart attack enzymes, auto- immune deficiencies, muscular dystrophy, diabetes, my bloods and liver were 100%. Nicky and I knew this – this is why it has been such a devastating blow to be fit and healthy and then for someone to ruin your life. Twice…. But in trying to stay positive – the radium injection x-ray I had which highlighted all of the nerve damage that has been caused by these botched surgeries only made it even more crystal clear that the surgeons did the damage – my body has absolutely nothing wrong with it except for the damage they did to it. In which case, one would hope, the insurance company surely can’t deny that this is not my fault and it’s high time I was paid what was due. When you pay your insurance fees your whole working life to protect yourself from poverty, dependency and for every other reason you can think of, it really stings when you have no clout and see your life becoming pointless.

I have often felt re-victimised due to the treatment of the so-called treatment facilities that I have had to participate in. Anyway, as good as the news is that there is absolutely nothing wrong with me, it is equally as devastating as I should be living a normal healthy life, just like I was. I want my job back, I want to do my Masters – yet I still owe for my Criminology degree and get penalised again. It’s a double-edged sword – almost like if only I had some disease to be the answer for this happening to me – not just “a treatment injury” that is only worth so many dollars to someone who knows nothing about me….and worth absolutely zero to the surgeons who wouldn’t even remember my name.

I just want it to end

i just want it to end

So I’m sent back and forth

and around again

to specialists and surgeons

who say it’s in my brain

the wiring’s fucked

Is what they say

because a butcher unfortunately

hacked away

at your hope

your dreams

your aspirations

your purpose

you

Forgiveness and acceptance

words to deal with

spilling your guts makes you better

I think that’s just a myth

to stop me

hold me

trap me in belief

I just want it to end

© Kait King, 2015

I can wait some more

So now, sick of being shoved from pillar to post and being basically bullied into corners, we have decided to go legal….My sister has been an incredible force. There is no way in heaven or earth I would have been able to do all the paper work and appointments on my own – or at all actually. She took all of that worry and confusion away from me.

We were fighting for me to have the correct amount of a serious medication called Pregabalin, AKA Lyrica – and I need the most you can take and a little Morphine thrown in here and there, just to keep those pain centres quiet. And I’m like “Hell yeah! Shut those fuckers down!” Hoping for a miracle and getting as close to that as I could with a lot of the “noise” pain being dampened. I still have severe pain in my back/hip/sciatica and the odd chest pain that incapacitates me too, but certainly not the constant stabs all over the left hand side of my body that was exhausting. And my right eye socket was so incredibly painful I couldn’t open my eye and I wanted to literally rip it out, or smash my head in. I used to pinch the skin next to the internal pain in my chest where the nerve damage is and also dig my thumb deep in to my eye socket to at least change the pain. I know I can’t be free of it at this stage, but at least not have the same gnawing hits. Anyway, I digress…so we go to see this lawyer and he’s fantastic. He’s onto it, he knows what needs to happen, what we need to get or locate etc. This is great as we needed this guidance and the clout that the lawyer gave us. The hardest part – well, there were two to be perfectly honest. The first hard part was actually going to talk to this lawyer – with such a complicated case there is so much information that needs to be assessed. And this is the firm to be doing this, but I was so fragile BeFoRe I left the bloody house! I felt overwhelmed, I cried and had to put my mascara back on – it didn’t help. I think I was in disbelief that after all these years and after all of our struggle on our own, someone was going to listen and possibly help.

Anyway, the second part is this; while you are the client/patient/victim/however you wish to see yourself, people get so involved in the complications of my case that they talk as if I am no longer present.My sister and the lawyer started chatting, I’m on so much medication and in so much pain I lay on his couch with a glass of water as my meds give me major cotton-mouth. So the hardest part of all of this (and it sounds sooooo not hard), but was listening to my sister and the lawyer “discuss” my case which made me feel like I wasn’t even there – and to be perfectly honest, I’m not when I’m on such medication.
But it also didn’t change the fact that I had to listen to how permanent my situation is, that there is nothing anyone can do and it’s just a matter of medicating her, sorting out what help I need and the physio required to “rehabilitate” me – world’s largest joke if that is supposed to be happening right now…because all I have felt is re-victimised, unworthy of help, forgotten and just a number. It’s not ok, the 2 medical misadventures I’ve had, it’s not ok to be abandoned by your so-called insurance company, it’s not ok when someone botches something, that they never have to own up – ever. The guy who ripped my nerves in my chest in 1989 is now the “golden boy” of thoracic surgery….how the hell did that happen? And I often wonder to myself if he would remember me – more than likely not. I daydream about getting an apology – a genuine “so sorry I fucked up” apology. I have waited since 1989 – I can wait some more….