Theo, and his ‘carer’s’ perspective
The post many of you have been waiting for… Theo’s thoughts, sacrifices and life experience of his daily ‘caring’. I should add that Theo and I have [...]
March 6th, 2014
3:32 pm
February 15th, 2014
9:21 am
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.
January 27th, 2014
10:38 pm
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.
December 23rd, 2013
11:52 am
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?
November 14th, 2013
10:50 am
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’.”
November 6th, 2013
6:35 am
The Hurting Strings, my crowd funding campaign
Now here's something I didn't see coming, my pain journey being transformed into an educational documentary about Pudendal Neuralgia (PN). And I have to warn you, there won't be much smiling and [...]
October 3rd, 2013
7:57 am
On A Current Affair tonight!
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 [...]
August 24th, 2013
9:52 am
Social Media for Pain Education, Pain Australia
Social Media for Pain Education by Linda Baraciolli. Published on Painaustralia enewsletter, August 23, 2013 Social media can change the way GPs and other healthcare professionals understand chronic pain, says pain advocate [...]
July 30th, 2013
10:07 am
A Pained Life: Timing My Pain
Excerpt from American News Report: July 8th, 2013 by Carol Levy, Columnist I was sitting at a table with some people I knew, slightly. I did not know how much of my [...]
July 7th, 2013
11:47 am
Reply to my ‘Fair Assessment for Compensation letter’
After speaking with Kris Vanston I now know that injured workers do have the Victorian Ombudsman to turn too for unfairness issues within the WorkCover system. I had my doubts about contesting my impairment score of 0% (that was deemed permanent I might add), as I am very well aware and have ranted aplenty about Chronic Pain NOT being acknowledged in the guidelines that are used to assess injured workers. That means there is Australian legislation (I'll rephrase; it is legal) for WorkSafe practitioners to ignore Chronic pain, thus Pudendal Neuralgia. No where within the system will any WorkCover practitioner be able to assess an injured worker's Chronic pain. I'm experiencing the result of this, I've been living this ignorance since March 2007. I wrote a letter that was ignored for a few months by our WorkCover Minister, WorkSafe and SafeWork Australia. The Victorian Ombudsman employee informed me not to use the 'info' email address but rather the 'enquiries' one when I'm writing to WorkSafe. Ridiculous but he was right and I eventually received a response. (Enter sarcasm) I now feel completely healed and completely relieved with the empty response I received. It managed to 'acknowledge', 'agree', 'assure' and confirm all the points relating to this outdated system that I initially made in my letter. I'm also more at ease knowing everyone who assessed me ignored all my symptoms and inabilities and that was legal. I'm also proud of the staff at WorkSafe who are happy to abide by ignorant and narrow-minded measures that would also apply to them in the event they injured themselves at work. Above all, I'm in awe of the WorkSafe staff and all related employees and practitioners who's reports are so loyal and discerning of these out-of-date AMA4 guidelines (with pain chapter removed), and The Accident Compensation Act 1987. This template response clearly indicated to me that anyone with chronic pain and with any of the following symptoms/limitations, as a result of a workplace accident will not get compensation: affected toilet function, spasms where you really don't want them, sensory pain (in my case throughout the pelvis), toothachey nerve pain, weakening legs, burning, zinging, if you have limited sitting ability, if you are limited in walking, standing, working, lifting, bending, exercising, if you have an implant as a result of pain (or even if you need one for that matter), if you rely on daily help, if you can't drive, shop, sit and type this damn email in one hit etc etc...! Well thank you WorkSafe for the 'quality' protection you promise. And Heidi just one question, would this letter have been acceptable for you if you were in my shoes?