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I've met some incredible people who have become my dear friends and my greatest supports during my pain journey. One of whom I often rave about is the wonderful John Quintner, Consultant Physician in Rheumatology and Pain Medicine. You've seen [...]
Prologue: This is not really a comedy but without a sense of humour and the odd injection of sarcasm this injured worker would explode from the frustration and disappointment that being in this system has created. I am heading back to conciliation on May 13 to battle for part-payments of compensation since declaring in December 2012 that I have a limited capacity for part-time work. I am also disputing my WorkSafe authorized Agent’s refusal to pay any of my medical expenses over the last 2-3 years. Acts 1 and 2 can now be written but Act 3 will have to await the outcome of the conciliation conference. But as you will see, the outcome could well provide the comic highlight of the performance. You in the audience may laugh, clap or cry as you read my sad little play.
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.
I declared I had a capacity in 2013 after being indefinitely written off for life by the Medical Panels (a Federal decision) in 2009. In what should be a most positive experience I have not received one cent from my WorkSafe Agent since January 2013 when I first declared I was attempting 9 hours a week. It's so difficult for me to work, I'm completely reliant on Theo but my moral ethics will not let me rest, never-failing to notifying me daily that I am able to contribute to our business and in doing so and remaining honest, this will bring a positive outcome. I've had no one within the system guide me or offer help during this process. The system's drive seems purely for the WorkSafe Agent to make any process as difficult and stressful for the injured worker so that they give up their rightful compensation or worse still, change their ethics making them so fearful that they never attempt work again. I have never, in the whole 7 years of being exposed to this system, felt I could trust anyone, felt supported, given hope, treated with respect. I have not felt any kind of care but rather I'm left to feel and be treated guilty of my crime - a workplace accident. I won't accept this treatment, I won't accept this poor income protection WorkSafe calls 'quality income protection', and it's lucky for me I have help to battle and savings to live off (which are rapidly diminishing mind you). Not being intimidated, fearful, or swallowed up by this system and its primitive ways is the reason I found my diagnosis and got myself back to work! It's the reason why a Medical Panels, for the first time, has acknowledged someone with Pudendal Neuralgia (even though they can't verify it!!), and it's the reason why, I'll get my entitlements too!...
I know many of you have been waiting for this post. I have been waiting to post it myself but one guess what was in my way? A response from my WorkSafe Agent... and I'm still waiting for it! I received my Medical Panels opinion and they agreed with the capacity I had presented. I was honestly stunned. My opinion read: Question 1. Whether the worker has a current work capacity and, because of the injury, is, and is likely to continue indefinitely to be incapable of undertaking - (ii) further or additional employment or work ; or (ii) further or additional employment or work that would increase the worker's current weekly earnings and, Answer: (i) yes (ii) yes Question 2. If not so incapable, what further or additional employment or work the worker capable of undertaking? Answer: Not Applicable Further to, the report that followed bewildered me, tears streamed down my face. I actually didn't want Theo to read it to me, I was too fearful I'd read another limiting opinion, like the previous one that has me bound to a 'Chronic Pain Disorder' that no one understands. Or, worse still, it was going to be like the Impairment Assessment where the Neurosurgeon on that panel wished me 'a miracle' on the way out whilst contributing to the decision of: '0% whole person impairment... The degree of impairment is permanent'. Theo began... he read mostly accurate details that I had voiced to the Medical Panel, I couldn't believe what I was hearing.
This is truly a thrilling post for me to finally be writing. I used to practise yoga 4 mornings a week for at least 45 minutes pre injury. After my warm up poses, my spine unravelling was eight minutes in shoulder stand, followed by another eight minutes in plough pose before Savasana (rest). So you can imagine how many times I've tried to get back to my yoga since knowing the benefits. i was always unsuccessful until I came across Dustienne's Your Pace Yoga dvd. I still can't work out what's different, of course I've made progress but that can't be the answer as it wasn't so long ago I attempted cat/cow pose only to begin flaring. I'd say Dustienne's sequence and breathing is definitely focused on opening, lengthening and creating space in the pelvis, it just feels great and I'm happy to report I've managed it once a week for over a month now. I know that's not huge, but I'm blowing my trumpets that I could sustain one of the routines. I hope to get to both but my struggle lying on my back may prevent me.
Tell us about your history and how you ended up in the position of being an amazing woman advocating for chronic pain? “I was working in our graphic design studio, Origin of Image (ooi.com.au) in March 2007. I was always health conscious so aside from my yoga ritual 4 mornings a week and walking everywhere, I would often sit on a fitball. It was great until the antiburst fitball burst and I fell to the concrete floor. It really was the split second that changed my life. I was 37. I think what tipped me into advocacy was the 4.5 years it took to find a diagnosis and the near miss I had with living out the rest of my life in horrific pain levels if I’d not investigated further. My chronic pelvic pain is more specifically known as Pudendal Neuralgia (PN) or Pudendal Nerve Entrapment (PNE). This is more simply put as Carpal Tunnel in the pelvis. Where Carpal Tunnel affects the hand signals and hand movements, Pudendal Neuralgia affects our biggest pelvic nerve which controls toilet and sexual signals and functions. The pudendal nerve runs under pelvic ligaments and muscles and is attached to nerve roots in the lumbosacral spine so it can be disabling. It feels like that core part of my body has a toothache or as if I have my finger stuck in a powerpoint. BUT, I’m happy to say I’m in a much better place now and that’s why I want to share my story. I believe if I was diagnosed within 6 months of my injury, I would not have this issue now and that makes me want to reach everyone with undiagnosed pain that may be suffering from PN. I’ve also been drawn to advocacy for injured workers since I’ve now had first hand experience with the WorkCover system and its limitations for understanding, assessing and treating chronic pain. In fact my chronic pain issue was not assessable for compensation. Its score was rated at 0% impairment. I’ve also submitted many complaints and questions to WorkSafe and associated organisations, I’m making a heap of noise on social media and gathering a great group of people in the hope of making a change. A network exists now, encouraging other injured workers to speak up, forming communities for support where there were none previously. Injured workers can now vent, speak up, be heard. Social media has provided a voice and is our legs (even when we physically can’t move). So in the process of advocating for PN/PNE the biggest tasks are to change the judgment and misunderstanding of ‘pain’, and misconceptions of the term ‘injured worker’.”
Communicating pain... Absolutely gobsmacked at this achievement, and incredibly confused at the same time. Who would have thought a horrifying life changing event could bring so much reward. Nevertheless, I’m going with it and am stoked to be considered for [...]
Continuing on with my awareness for Pudendal Neuralgia and all things pelvic pain, I didn’t pass up the request from A Current Affair to speak about nerve pain and my experience with it and its treatment, predominately focusing on the [...]
It's been a while since I posted a personal update but it's probably accurate to say that PN's weather patterns need to be documented seasonally. I mostly have turbulence, like it's sunny one day/stormy the next, or otherwise described as I take two steps forward and about 1.9 steps back. It's incredibly frustrating. So rather than report all the fluctuating details in between, it's best to leave some months go by to really figure out the progress. So now, the months have gone by and I can deliver to you, Soula's PN weather update for September 21, 2013.
