My latest…
The Medical Panels assessment of my work capacity 2014
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.
Myself, Ms Soula and my pelvic pain story at the Alliance for Improving the Management of Pain 2014
I would have had to be dead not to front up to an opportunity where I could present my pain journey to 180 chronic pain interested practitioners.
Was I terrified? Absolutely! But as if chronic pain hasn't trained me for that, pushing me past all my boundaries and limits, and facing constant fears... this was going to be a piece of cake in comparison!
The Alliance for Improving the Management of Pain 2014 (AIM Pain 2014) was held in Sydney and PainAustralia were searching for a patient to tell their story. My first thoughts were; I had to be able to tell my pelvic pain story through art, Ms Soula had to be on the stage with me, and I worried that this was impossible to physically manage without Theo's help. As it turned out all that was ok, in fact the organisers were most enthusiastic about the creative side, and the support for both Theo and I was 100%.
I was asked to present my story as honest as possible and in my own words and pictures.
Back to yoga, thanks to Dustienne Miller’s, Your Pace Yoga
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.
Visual Pursuits book review on Art & Chronic Pain – A Self Portrait
In Art and Chronic Pain – A Self Portrait, artist Soula Mantalvanos shares her experience with chronic pain, which has been a debilitating presence in her life for almost seven years. Soula suffers from Pudendal Neuralgia, a painful nerve condition that developed following an accident where a fit ball that she was sitting on burst, causing her to drop violently to the concrete floor beneath. Early on in the book Soula describes that split-second, and the devastating effects that followed. A highly active yoga-loving woman before the accident, throughout the book Soula gives a deeply personal account of the psychological, emotional and physical impacts of living with chronic pain for so many years. These negative effects were compounded by the fact that her condition Pudendal Neuralgia baffled her doctors, and took four and a half years to even diagnose.
Festive cheer or is it festive fear?
When I hear 'festive cheer' I can't help but rhyme it with 'Festive fear', are you terrified at this time of year? Festivities call us to get out of the safe daily zone, step into marathon entertaining, baking, wrapping, socialising, a time to move away from our therapists and their treatments (Lord knows they need a break!) and jump! It's impossible not to wonder, how will this end for my pelvis?
Off to the Convenor of Medical Panels with my invisible pain
You know that feeling before something great is going to happen, like just arriving at the airport and knowing you're off on a great holiday? It's a great feeling isn't it? Makes your insides really happy, the body and mind get a lift, and troubles seem to slide away, everything feels like it's going to be alright. Well, I couldn't feel more the opposite right now. I have an appointment with the Convenor of Medical Panels on Tuesday and I'm feeling more like I'm facing a funeral.
Soula Mantavanos…Inside her home and her passion to help others!
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’.”
The Hurting Strings, my crowd funding campaign
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