I begged Professor Teddy to do anything, even to chop my coccyx off but he (and his backed up opinions) suggested not to go the invasive path just yet (removal of the coccyx had also not been very successful in treating chronic pain), we had an option for an implant, a treatment that was reversible, it made more sense. To 'qualify' for a stim you have to go through a trial first. The trial period was two weeks and in that time I had half of two leads placed inside my body (yes this is a full anesthetic/operation), with the remaining half of the leads hanging outside my body connecting to a temporary unit. It's a risky period, one very highly susceptible to infection but it allowed me to test the device and its impact before we implanted the $60k (or so) unit. Am I grateful I had private insurance? You bet! My WorkCover insurer certainly wasn't going to pay, eventually dismissing the surgeons reports as not having providing enough information.
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Being resourceful is what makes the difference — it is so hard working life out. But Theo and do it. We burrow down and we make it happen. There's no choice... or rather there was but I didn't want a fulltime WorkSafe paycheck. Of course, I think about that. And of course, I often call myself stupid for declining it – I was safe! I had that full-time paycheck for the rest of my life. But creativity and sharing the day with Theo is so precious to both of us. Even with the complexities and risks, it appears to be the only way Theo and I can live. For this, I am grateful! So I'll stop complaining now and go on with what I've been doing and what I am achieving. It's all good! I'm moving. Life is in forward motion after being so still for so long – a decade at least!
It's an act of forwards and backwards, sideways and a lot of down ways. It's really hard work. The less it yells, the better I feel and only then can I do more and pace up. The more I poke it, the worse it gets. The worse it gets, the deeper into the hole I go and further away from coming back out! I don't just pay with pain, I pay with time – lifetime!
I'm finding it draining to advocate and blog my experiences. But also, I don't feel my voice is as necessary anymore. I want to be known for my creativity and where it aligned with chronic pain to influence behaviour change – specifically the structure of appointments.
It will take one whole year until stim and I get to know each other. I've done this twice before, I know! There are programs to explore, capacity to pace, and sitting to try without the aids. I want to hop in a train and a tram, and hop off in the city without an agenda and limits. I want to catch up with my dearest friends, some whom I've not seen since I left Melbourne. We've been living off parcels, emails and the phone, and that really hurts.
Where to next? (Part 2/3) I knew there was something seriously wrong with my sacral stim implant. By the time that information was confirmed, my mind had run off a few thousand questions. I’ll share a few: Question number 1: [...]
As long as WorkSafe and their Agent keep treating me unfairly and refuse to support me in the way that I am entitled, I’m going to keep my reports coming! What have they done now? [...]
There was no rushing to catch transport! And the sounds of Venice are soothing and happy. In the morning we woke to the sounds of the local's footsteps and the sounds of them working along the canal. Local chatter in the street, dogs barking and of course, the church bells. Sounds impact a person with a chronic illness. My mind was at peace, it felt rested, all was calming and gentle.
I won but why did I have to fight for pain treatment in the first place? This is typical treatment for an injured worker in Australia. What was the real point of my stubbornness and the on going battle? I [...]
(Cut to the chase, I want to support the Pain Revolution 2018. Image: Lorimer and Soula at the Pelvic Pain Foundation of Australia Melbourne launch) I’ve got a soft spot for Professor Lorimer Moseley. In Feb 2011 I had just [...]