soula in About
, My pain
, Work & The System on May 9, 2013
We don’t usually love media, but a little attention after some lengthy hibernation from work was bound to be very valuable for our (Theo’s and my) 12 or so year old business, Origin of Image. The lovely Sunday Style (Herald Sun) offered an interview in their ‘My_Space’ feature… hmmm, quite funny for us as there’s nothing ‘my’ about ‘our’ life. We share work, living, we even share Pudendal Neuralgia (PN).
However this media attention and the snap of me in Sunday’s weekend paper had me staring at my portrait (thank you Marija Ivkovic) with curiousity at that captured second of my able life. I looked incredibly independent, active, like I was working full-time and like the issue I confessed to was clearly easy to live with.
We are all judged on our facade… and although it was stated in the article that I have PN, I often wonder: can it (or any other invisible issue) ever be understood by my friends, family or community at a glance? The answer is obviously ‘no’. I myself battle to understand this conflicting issue with its high sensitivity, on/off maddening, screaming and confusing signals and failing functions, and that’s no surprise because even I can’t see it! Theo puts it well, “I can’t understand Pudendal Neuralgia but I believe Soula”.
As you may have read I’m a little suspicious as an injured worker, about my WorkCover assessments over the last six years.
No one has ever documented or treated my condition appropriately, no one seems to know Pudendal Neuralgia, it seems like it’s not part of the guidelines that Independent Medical Examiners are required to assess [...]
soula in Work & The System on December 28, 2012
Increasing employment opportunities for people with disability.
Minister Shorten seeks proposals on ways to boost employment participation for people with disability, discussion paper seeking public views on how best to achieve reform.
The discussion paper, Improving Employment Participation of People with Disability, seeks public views on how to best achieve reform, including:
• how to promote and improve equality for people with disability in employment and in the workplace
• how to support employers to identify and remove barriers to full and equal participation of people with disability
• how to promote the removal of all forms of discrimination on the basis of a persons’ disability
• how to improve workplace consultation between employers and employees on issues concerning people with disability in the workplace
• how to improve the productivity and competitiveness of Australian business through the advancement of people with disability in the workplace.
The Government would like to hear from all interested parties, including:
• people with disability, their families, carers and community representatives
• employers and employer representatives
• current Employment Service Providers
• state and local governments
• unions and other employee representative groups
soula in Learn
, Personal resources
, Work & The System on November 9, 2012
“I’ve got to get to work, it might have been work… I have to get to Swanson Street… I sell The Big Issue”. Yes, you read right… and to top it off I was kindly informed, in just a few stops, that I could buy a calendar too! I couldn’t help myself, I asked, “Are you trying to sell me something on the tram?” We all laughed.
soula in About
, My pain
, Work & The System on October 23, 2012
…please gear up with me, imagine the drum rolls and the biggest mountain you can imagine with me standing on the tippy top yelling because this IS real, IT’S true, IT’S official:
I’M BACK AT WORK!!!!!!!”
No, I’ve not overdosed on my medication and the stress of a chronic pain issue has not damaged me enough to be hallucinating.., I. AM (wiggling heaps but all the same). SITTING. IN. A (very nice ergonomic). CHAIR. TYPING. THIS. POST!!!!
soula in system
, Work & The System on August 28, 2012
I’m forever searching for a decent explanation as to why the AMA Guidelines used to assess injured workers in the WorkCover system are so poor and out of date, especially when it comes to assessing chronic pain (and in my case of pudendal neuralgia measures a total score of 0!!).
Along my social media travels, searching for answers and researching for treatment or updated information regarding my condition, I have met John and had the pleasure of some great discussions. Dr John Quintner is a consultant physician in rheumatology and pain medicine and has kindly offered to share his published opinion on the matter. Thanks John!
Personal injury compensation: lessons from Talmudic law, by John Quintner
…This article examines some of the principles upon which our personal injury compensation systems are based, in order to better understand why the process of tort litigation has itself become such a major factor in healthcare in modern societies…
soula in Work & The System on June 27, 2012
After a few battles regarding my massage treatments, peripheral stimulation implant and finally receiving a letter form my WorkSafe agent stating I would no longer be receiving medical reimbursements/support, I began a hunt for a deserving explanation…
But back to my main point, the answer I was seeking. I called the contact the Hon Gordon Rich-Phillips advised and it led to a conversation with my WorkSafe Agent’s Injury Management Advisor (IMA) and for once, I seemed to be having an open and honest conversation with a WorkSafe Agent employee. It’s hard to say it was honest because this system has taught me not to trust anyone, sadly. It felt like a great relief to be speaking to an educated, intelligent, experienced and capable person… I didn’t get invalid and poor excuses or worse still, lies. Every point I made was dealt with and the conversation was about me, my case and my specific issues…
…the grand finale was that the IMA was going to answer why my medical expenses support had ceased?
The condition and existing barriers to management and practice
My understanding of a ‘syndrome’ is that it seems to remain myth-like until serious research is undertaken and repeatedly produces the same findings in many patients. The Research for Pudendal Neuralgia is minimal worldwide, almost non-existent in Australia. Although specialists and therapists are documenting their work Pudendal Neuralgia can’t seem to penetrate its existence in Western Medicine’s Bible, and so it is unrecognised, misunderstood or ignored.
So when my physiotherapist at The Women’s Hospital mentioned Alesha Sayner and I heard she was compiling a presentation for her Masters specifically about Pudendal Neuralgia, I jumped at the opportunity to hand over all my experience knowing this is exactly what the issue desperately needed. I was even more enthusiastic that Alesha was interested in documenting WorkCover’s understanding (not) and treatment (not) for injured worker’s with the issue.
Thank you Alesha Sayner and The Women’s Hospital for this huge first step, so crucial to Australian sufferers of Pudendal Neuralgia, such therapy for me too!