Very chuffed to be selected as a semi finalist regardless of the outcome. The portrait was flown up to Sydney for a second round of judging. She didn't make the final cut of 30 finalists but I feel so content that Ms Soula is going to great lengths to create awareness for invisible pain.
Last week, I attended my last acupuncture appointment and for the first time in over seven years, am therapist free. Hang on, I have to just repeat that: I am therapist free Did I ever think this day would come? Of course I did and I believe that's why I am here. I have had my moments, but what I didn't realise through all that heat and whilst pacing like a snail, was that each flare up and pain episode was actually not an indication that pain was here to stay, but rather that it was actually beginning to leave. Although just a difference of minutes initially, eventually I felt the flare ups spreading further apart. And with recognising that change and NOT increasing my capacity past a snail's shell weight, I began to make progress.
Collage has been a little more therapeutic for me than my usual art forms. I think it must have been finding a technique that I could manage and one that didn't add to the fatigue and pain. Cutting small pieces of paper and glueing, drawing, attaching was just so light and easy. The painting of small pieces of paper and the careful ripping and tearing was like rocking. So gentle, so calming and at the same time feeling like I was handling my pain, expressing it and getting it out of my body and onto the art piece.
Hallelujah! Pardon my pun here, especially as I'm preaching sexuality on a Sunday morning but finally, here is some thorough research and attention for the clitoris. Thank you Louise Smith for sending this link to me.. I think it's essential info for everyone, not just women with PN. Thank you melodiousmsm for writing this and thank you to artist and sex educator, Betty Dodson for the fabulous artwork.
(http://americannewsreport.com/nationalpainreport/my-story-a-pain-in-the-coccyx-8823596.html) The National Pain Report, my story. April 14th, 2014 by Soula Mantalvanos I begged my neurosurgeon to do anything, even to chop my coccyx off. But after getting opinions from other surgeons, he suggested not to go the invasive path as we had the option for an implant called a peripheral stimulator, a treatment that was reversible. It made more sense.
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.
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.
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?
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 [...]
