Saturday, 29 August 2015

Updates and excuses PART IV: The Lame Game...

This series is nearly completed, we have made it to the last stages of these Games. It has taken me so long now that I am really impatient to move onto the next part of the story. Certainly, there has been a lot going on; a lot to document and get through - but when isn't life full of surprises and things to do? Procrastination, excuses... these are just some of my talents for sure - and the excuses are but one part of these Games! Writing has always been a huge part of me but yet, it is also a driving force that seems to be generated from somewhere else - as though channelled directly from my muse... And it's something that I cannot force. Especially about Pain. Pain draws away so much of my energy, my power, my very being. Sometimes it takes all that I have and all that I am, to fight Pain. But despite all this, I am still winning! I have been undefeated for so long now that I plan to stay that way. I finally have the winning edge against my foe! I am still winning these Games!

Rather exhausting it was, going through the Name Game. Seeing doctor and specialist, one after another; having potential diagnoses thrown around, tests and scans ruling them out; before starting the process all over again. It's like a very boring episode of House M.D., though with no screaming, no vomiting blood - and no mention of lupus or sarcoidosis (My watching House drinking game!)!


Ah, the Lame Game. Lame with my gimpy legs! Lame from boredom, and lame from inability to change it. But I am getting ahead of myself. Where we left off, I was off to the neurologist! It had been a while since I had seen one, only in the very early days of my arm. I knew I had at least a nerve conduction study ahead for me, something I wasn't looking forward to, but knew it had to be done. A nerve conduction study involves electrodes being placed on the skin and being zapped; jumping limbs and unpleasant sensation of electrical currents shooting down my legs. Apparently it is supposed to feel like having elastic bands being flicked on your skin, or static electricity zaps. Naturally, that is for people without freaky nerves - for me, there is significantly more 'discomfort' (read: pain!). However, I have long abandoned my fears of needles and procedures. I might not like them, but I am willing to endure some uncomfortable stuff and pain with the knowledge that any 'discomfort' I feel is only temporary. Unlike the Pain, which is always present, never ceasing, never ending. Temporary means that that particular pain (with a small 'p') will end at some stage. And then I can go home, lick my wounds and have a cuppa. You know you're getting old when you get excited over a cup of tea!

The neurologist I saw was lovely, whose calm and kind bedside manner really put me at ease. Admittedly, I had a bit of a backstage pass as he works with my mother. But I don't think that was the only reason he was so nice. It is not as common as it should be, to have a good specialist who has this particular ease with patients. A specialist who sees the patient in front of them as a whole person, rather than a checklist of symptoms. A real rarity! He sent me for not only the dreaded nerve conduction study, but another MRI, only this time looking at my spine and brain. While most people have a twinge of apprehension in the thought of scary stuff lurking in their heads; I also had a bit of excitement - I would finally have irrefutable photographic proof forever more that I do in fact, have a brain, for the next time I did something stupid! But I would also be reassured that every headache or brain freeze was "not a too-mah!"

MRIs and I are not good friends, but a bit of valium allowed a truce and some good music made the time pass easily. It was a longer scan than the one of my knee, and involved being right in the noisy contraption. I got the option of a periscope with mirrors to see outside, or to go in blind with a sleeping mask. I took the mask! I didn't want any reminders of the first time, being trapped in a coffin and unable to breathe! Though I still felt I was being jack-hammered from the inside out, and the noise sets off my pain; I was better equipped, prepared and able to manage it. The technicians were fun too, joking around about being the deluxe suite and naturally better than shitty North Sydney! And they liked my music, which was 'Canto Ostinato' by Simeon Ten Holt - my favourite dutch composer and go-to relaxation/meditation music. It really showed me that just because I had one bad experience many years ago, doesn't mean that they are all the same. Life lessons are found everywhere!

I braved the nerve conduction study, which was thankfully quickly over. It turned out fine; unsurprising because CRPS affects the small-fibre nerves which the NCS cannot detect. I was settling down, knowing that my hunch seemed to be proving correct. Crappy CRaPS had indeed spread. However, getting a callback from the radiology department was unnerving. Not the type of callback you want to get. They wanted to look a bit deeper, in the internal auditory canal. I tried to stay calm, but my mind rushed through all the things it could be. Why did they want to look there? Oh shit... my balance problems... my tinnitus... 

Meanwhile, the neurologist reassured me that abnormalities in the brain are somewhat normal, and to trust his word that he would tell me if it were time to panic. He said most people have abnormalities, that just finding something did not mean that it was a concern. He did not think it was MS; though there were indeed similarities, the symptoms didn't match up. However, if it were there, it should show up on on brain and spine scans. 

After the callback, I was feeling somewhat unsettled about them peering deep in my brain. It wasn't just that Kindergarten Cop-tumor moment we all have; but for me it is the thought that something could be interfering with my favourite body part. It's the one and only part of my body that works well, rather it's the only body part that hasn't failed me... Or come to think of it, it is the body part that has actually failed me the most.

Like all our deep relationships, it's the ones we love the most that have the greatest potential to hurt us. I have always placed great value on my ability to think, to create, to understand. My intelligence. More than my mobility, or even use of my hands. The powerhouse, the control center. I am my memories, my essence is within my experiences. The thought of losing that is heartbreaking. Despite 14 years of Pain, I still always had my brains; my ability to problem solve, to explore and experience. Those memories were what got me through the worst of the Pain. But yet, this very part is also the one that is hurting me the most. It is the source of my Pain; where it originates. It is the maintainer of my Pain. Though I feel it in my arms and legs, it is not those nerves that are creating the Pain. The Pain is in the brain, driving me insane... My brain is also where my dark days of depression came from; my madness and insanity. It is my destroyer, my redeemer, my saviour. Losing arms and legs, it's a shame but I can adapt. My brain though...


There were some unusual findings, though nothing earth-shattering. I have spina bifida occulta, which is a few of my thoracic vertebrae that did not completely close up before birth. It is the minor form of spina bifida, many people have it and don't know as it is only detected by x-ray and scans. Besides the vertebrae being weaker than the rest, it wasn't causing any problems, thankfully. I also have a few damaged discs in my lower back, which I had no idea I had (or just that the niggling pain I feel there is completely overrun by the neuropathic Pain elsewhere), and mild scoliosis. While interesting to see, the images and videos of my brain were definitely the coolest inside-pictures I own! The ultimate selfie - brains and eyeballs! 

The neurologist referred me onto a pain specialist, one whose name I had heard mentioned in past reports, but was never able to see until now. It may have been that the insurer did not approve the consult. The paradox of workers compensation often meant that treatments that could have had the best outcomes, were often denied on basis of cost  - leading to an even greater cost in the long run. Workers compensation claims were all about the short-term, and that lack of freedom in my own treatment was part of what drove me to get as far away from it as possible. Regardless, after all these years I was finally going to see him. 

While he was nowhere near as nice as the neurologist, or orthopedic surgeon; I didn't find him as bad, or as rude, as other specialists I have seen over the years. After a bit of a wait, I was called in late and he didn't waste time getting straight to the point:

"I've been reading your file here and it would seem you are in fact, having a spread of your CRPS from the inciting injury 12 years ago, brought on by shin splints..." 

And there you have it, in that one sentence, I had my answer. And it was the answer I had suspected all along. The Name Game was finally complete, only I wasn't sure if I had won. The prize being the inescapable progression of my already incurable and lifelong progressive and painful disease. The prize of more Pain, more limbs, more disability, for the rest of my life. Was I relieved to have my answer? A little. A lot. Certainty is better than uncertainty; confirmation even more so. While I take great effort in telling my loved ones that I am always right, this was the time that I... well, a tiny part of me hoped I was wrong. That it would be something else, something treatable, curable. Something that had more hope. Something that could have some change, improvement. Something that could lead to better things. Where I could be normal, boring even.

"However, you would be an ideal candidate for a spinal cord stimulator. It is too late for your arm, which is already chronic end-stage CRPS. Once it has progressed that far, there is little point. But for the legs, you are within the good time frame, though I wouldn't wait too long..."

Wow! An option? A possible means of getting out of this? Something beyond the 'live with it' mantra I have been hearing for over a decade? I could almost hear the choir singing... Hallelujah! I can fly again! I will be able to fly higher than ever before...

But hold your horses! The stark cold reality came crashing down around me almost immediately after I was lifted up by the endless possibilities of what this could mean for me. Falling into a deep, dark, cold hole in the ground after my wax wings melted in the hopeful hot sun. This is a very expensive undertaking. Outright, without medical insurance, the cost estimate quoted to me was... Wait for it... $45-50,000. Yes, that is correct. More than plastic surgery; more than a rather nice car. As much as one of those elaborate weddings I would never have myself. The second option was to participate in a clinical study, where I would get the SCS implant for free (in return for being a medical guinea pig!), only covering the hospital costs, which without insurance would be somewhere in the ballpark of $10,000... 

It was a rather sad and lonely train ride back home that day. I was in a bit of a daze, having felt all the hope in the world, only to have it snatched away in a second. A "nyah nyah, you can't have it" opportunity that was being waved just above me, well out of reach. To have that one hope dashed in just a moment after it was given. It was like I had almost gotten through the doors of the exclusive club of "normal life" before being denied entry: "sorry madam, you can't go in there". It was almost worse than just being told it was the just the CRPS spread. That I could live with, adapt and move on. Low expectations means you can generally exceed them. But hope is a higher expectation - to have it then lose is, it can destroy you if you are not careful. 

Back to problem-solve mode: What were my options? Could I borrow money to get the SCS? Unlikely to impossible. A few thousand perhaps... but a deposit on a house? Not a chance! With that out, what were my other options? Rehabilitation, sure. When I got back. It was time for me to return to the Netherlands. I had come seeking answers, and now I had one. Hard evidence is always more valuable than guesses, and a fistful of reports would make it easier in seeking treatment back in the country where I did have medical insurance! It seemed my journey had come to a close. For now, at least.


So, it was time for the closing ceremony of these Games, the Shame, Blame and Lame. Onto the new chapters of life. I love my sunburnt country! I would miss the sunshine and warmth. The endless blue skies and the expanse of the Milky Way in the star-filled nights. To not hear the whisper of wind blowing in the trees and the constant chatter of birds. Surrounded by bush, water, ocean beaches and with nature at the doorstep. My nearest and dearest - my ever supportive and loving family. I had also made a few new friends this visit, mainly from the meditation group I had joined. I was unable to see many people in general, with all the medical stuff. Plus, I had not really told many people the extent of my disability, and without my mobility I had a fairly limited travel range. It is always a sad parting with my homeland, but the Netherlands was also my home too. I like having two homes, at opposite ends of the earth. Best of both worlds... I will always return to my beautiful land, but fate has chosen my second country. Opportunities await, the looms are busy weaving the next page of my story...   

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