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 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 [...]
Then things got even more strange. There was heat, radiating heat where the IPG is, in my face and also other strange feelings that not only added to my pain issues but it made me turn my stim off, more than on! Weird.
But I'm sure it'll all pan out ok. So much for looking after myself and preparing for potential weight gain as I approach my half decade milestone. The weight I've lost has potentially caused a shift in the position of my implants.
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.
A few months into my implant and I felt like I was human again... my senses were back and it was incredible!! That thick pain fog was lifted and I could taste, smell, see, concentrate, focus, remember, listen, think, plan, dream, enjoy, laugh, read, oh what bliss!!!!