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Dear WorkSafe Victoria

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Letter To WorkSafe VictoriaDear WorkSafe Victoria,

We have been acquainted now for over seven years, and to commemorate this occasion the least I could do was to pen you a few heart-felt words.

Today I came across WorkSafe’s Clinical Framework For the Delivery of Health Services and I would like you to know that it made so much sense to me from my perspective as an injured worker. I was very impressed reading through it. It ticked all the boxes and its approach (Purpose) was exactly what I had hoped to experience in my own chronic pain journey under your watchful eye. The guiding principles caught my attention:

  • Measurement and demonstration of the effectiveness of treatment
  • Adoption of a biopsychosocial approach
  • Empowering the injured person to manage their injury
  • Implementing goals focused on optimising function, participation and return to work
  • Base treatment on best available research evidence (more…)

Will I live to regret it?

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April 2, 2014 update:

(after my WorkSafe Agent reply)

I’ll get my cheese @WorkSafe_Vic…

Idiot!

Have you had that moment? Do you remember promising yourself you’d always try your best in life and remain as honest as you can? But then down the track something happens and you find yourself asking, ‘why did I have to do rock the boat?’

Often I wonder how much easier life might be if I didn’t try so hard, if I gave in a little and didn’t aspire for the best I could possibly be. This positive attitude has occasionally got me into nothing but trouble. Sure, I have a clear conscious, but I’ve had to endure more stress, financial loss, and much more pain. No guesses, I’m talking about the Victorian WorkCover system again.

After my initial battle in 2009 with my WorkSafe Agent where I was first assessed by a Medical Panel, I was found to have no working capacity indefinitely, which meant three quarters of my pre-injury weekly wage was certified until the end, of what was projected to be, my working life. But, with diagnosis and great treatment (none of which has stemmed from the WorkCover system), I have improved. After acquiring a regular monthly design job that covers the wages of our full-time designer presented itself and being desperate to revisit our old life of working together, Theo (my husband) and I considered re-establishing our design studio, Origin of Image. We wanted to celebrate our life together, I wished for some resemblance to the ‘working human being’ I was, I craved the challenge of a client brief and most of all I desperately wanted to remove myself from being part of a poisonous system, at least when seen from the viewpoint of an injured worker.

I proceeded in a most unrealistic way to convince myself that I had a working capacity. I got excited at being able again to think for more than 10 minutes, I got excited at not having to sleep throughout every day in order to function, I got excited when finding that I could conceptualise again.

Was I daft? (more…)

The Medical Panels assessment of my work capacity 2014

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Medical Panel Opinion CoverLetterI 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 Panel’s 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. (more…)

Myself, Ms Soula and my pelvic pain story at the Alliance for Improving the Management of Pain 2014

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AIM of Pain 2014 from (OoI) on Vimeo. Or read the speech below.

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 offered to both Theo and I was 100%.

I was asked to present my story as honestly as possible and in my own words and pictures. (more…)

Off to the Convenor of Medical Panels with my invisible pain

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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.

Who are the Convenor of Medical Panels for those lucky enough not to have had any experience with them? I’ll just pop in their website information as they explain it best:

Medical Panels are constituted pursuant to the Accident Compensation Act 1985 and the Wrongs Act 1958.
A Medical Panel may be asked to provide an Opinion where there is disagreement or uncertainty about aspects of a WorkCover related injury or medical condition.
A Medical Panel may be asked to provide a Determination where there is disagreement or uncertainty about the degree of impairment resulting from an alleged Wrongs Act injury.
A Medical Panel Opinion or Determination on a medical question must be accepted as final and conclusive.

If you’re an injured worker, you won’t need to read on as you’ve either experienced the Panels yourself, or after reading the above lines you’ll know exactly what I’m about to say. For those who are not injured workers and want to understand your injured worker friend, read on. And if you are a Panels assessor*, please, consider the following and what injured workers have to endure when they face you.

Following, are my thoughts and the questions that will swivel around my brain, down my spine and burn my pelvis until this appointment is over and the final decision is mailed to me. (more…)

Soula Mantavanos…Inside her home and her passion to help others!

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ShowAndTellHeader

ShowAndTellHeader
Show and Tell online interviewed me about art and my advocacy for chronic pain and injured workers… thanks guys!

Let us introduce you to Soula Mantavanos…an inspiring artist with a passion for helping others deal with chronic pain. Today we are trying to help her spread the word as far as we can reach to help all those in need…but also, she is an incredible artist with an incredible home…so we thought you might not only like to hear from her but see where she spends most of her time. These pics were photographed by the wonderful Sean Fennessy and produced by Lucy Feagins of The Design Files.

Soula has been forced do deal with crippling pain since her fitball burst and caused her to fall on a concrete floor. She is now dealing with chronic pelvic pain which is more specifically known as Pudendal Neuralgia (PN).  Soula is now advocating and working tirelessly to help others through her website.

We sat down with Soula to hear all about it, check out the links she has provided and share where you can! Ohhhh and enjoy her gorgeous home!!

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’.”

You’re an amazing artist Soula, your latest piece has landed you as a semi-finalist for The Doug Moran National Potrait Prize – how incredible? What an honor and perhaps therapeutic for you?

“Winding up a semi finalist for the Moran Portrait Prize is indeed a huge honour. To be amongst a group of artists I admire so much, and to be in a National prize with incredible judges… HALT… But it’s also a bit confusing. I find myself wanting to squeal with excitement, but I realise this all came from an awful change in life… how can something so bad bring something so good?

I’m so grateful for my gift of creativity. I believe it is the best ammunition for life’s toughest moments. To be able to communicate and express my pain this way is definitely therapeutic. The idea for a self portrait marionette came about on an airplane returning from a trip to Italy. I had watched Marilyn  the movie, and was thinking, ‘you couldn’t see her pain either, no one understood her’. I thought of the human exterior, the story of Pinnochio, I’d seen endless Venetian masks and the puppets made by artisans in Orvieto and I’ve always been drawn to documenting eccentric characters. I was writing in my journal and it all came to me in that moment, it was perfect. I’d have a self portrait marionette made!

So I didn’t risk attempting to make the marionette myself, I was too scared the pain monster would come out from within and she’d look horrific. I also wanted her to be fully functional, the movement had to be right, she had to be reliant on her strings, after all she had no control. Colleen Burke did a brilliant job and now I have a character to document that looks happy, looks well, is dressed well… that is what pain is like, invisible. I’m happy to be achieving what I set ‘Ms Soula’ out to do, communicate the invisibility of pain, teach people that many illnesses are not visible and they leave you feeling as though you’ve lost control in your life, like someone else is pulling the strings.

The Moran semi finalist piece, Self Portrait (Art & Chronic Pain), is being seen and reaching others in pain. I’ve had much contact about it, I’ve had many pain sufferers tell me the piece has encouraged them to create as well and one particular lady (in the US) has been inspired to dig out her childhood marionettes that she’d completely forgotten about. She is battling with Cancer pain. I didn’t need to win the prize…”

Tell us how we can help?

“I’d love for you to help me educate everyone about PN, I want to reach more men and women (yes, it certainly affects men as well). I want to reach practitioners that are telling patients their symptoms are ‘common for back pain’ and who don’t know much about the pudendal nerve. Oh and can you guys get the Australian Government to change their WorkCover legislation???!!!

I’ve met the most astounding people during this pain journey and one group is Handmade Films. We’ve set up an Indiegogo campaign and seeking support for a documentary film on PN. I’d love to see the documentary shared around the world… free.

If anyone is reading and thinking ‘that sounds like my pain’ please visit my personal website: www.pudendalnerve.com.au.”

What are your goals with your fantastic website?

“First, I really need to get this credit in for my diagnosing physiotherapist, Anne-Florence Plante, as my site never would have been as credible without her research. She handed me her bundle of notes, I contacted all the professionals referenced that I could, worldwide, asking for their permission to share their research and they all said, ‘yes’. These Practitioners and specialists have been like family, continuing to share their information, keeping me up to date with their research, taking the time to write personal messages of thanks and encouragement, it seems to be the same goal around the world, education for PN. So the initial goal was for pudendalnerve.com.au to be a global resource.

The ultimate goal, honestly, is for it to fizzle out actually, for it not to be needed. I’d like the search terms to go from ‘what is PN?’ to ‘PN success stories’. I want my story of pain to reach an end, for readers to get better and have better things to do than read about pain! I’ve had 50,000 visits with half of those being unique visitors since I published the website in Feb last year. That’s actually very sad, it shows how lost people are with PN, that there is limited knowledge and treatment and a huge lack of understanding.

Perhaps now the site could morph into a gallery website for any artist documenting pain… somewhere they can make up for their lost income!”

Tell us some great tips to adjusting and dealing with this chronic pain issues in your day to day life? 

“I won’t lighten this up, there’s no easy way to deal with chronic pain, it’s debilitating and life changing. But you can’t give up, you just need to set yourself up.

  • Well first and foremost diagnosis and trigger points are key, you need to know the source of the problem and this can take a long time. Then everyone’s going to need a partner like mine. Theo is THE biggest treatment of all. To have an understanding partner is a huge support. Chronic pain needs daily help so for those who know someone with pain who is living on their own PLEASE HELP.
  • Setting up your home and life is so important, you need to create a sanctuary a new way of life. I’d start with asking some friends or family to come around and re-setup your home to suit YOU. We just revamped ours, seriously we went as far as not having a door on my studio space because it’s a waste of capacity to be opening and shutting a door. And the studio, as messy as it is, is right amongst the living space and our kitchen so I don’t need to move too much to get to the couch, outside, to the coffee, to the food, to varying sit/stand positions. And my aids are everywhere!
  • You need flow, ease of movement, everything within reach, everything light in weight, if it’s not light have a trolley or a chair on wheels to move things around. Ask yourself if you can leave tasks for later, even if it’s something on the floor you can’t pick up or moving a heavy book. Ditch the heavy crockery, go plastic, no handbag, get handy with online shopping and a smart phone. Instagram instead of giving in to comfort eating, stay away from unmotivational daytime telly, get the pencil and journal out, draw and write, I used to have games on my phone, it’s easiest to carry around and keeps stimulated and motivated (unless you get one of those old time movies!). But, in the thick of it, I slept and slept, only set myself 3 tasks max a day. In that pre-diagnosed state it’s all about taking care and believing this will not last, it’s a moment in time for discovering what the problem is.
  • Prioritise who and what is most important to you and let this be your daily guide for activity.
  • Plan every day 2 weeks in advance to make sure there is down time and no back to back events
  • In your vocabulary, replace ‘I have to’ with ‘I don’t have to’
  • Remember everything you do and everything you DON’T do counts (as in activity)
  • Make a weight lifting limit so you have a defined goal. Eg, Mine is 1-2 kilos. I drag the full litre of milk along the bench on a towel, drag all sorts of heavier things rather than lift them. I use my elbows to move a bowl across the table for example I use my elbows when dining, lean lean lean on the table (did you know the elbow is the strongest bone in the body?). I lean on the traffic lights, lean on a building, lean anywhere, it saves your capacity and gives your back a break. When travelling I took a walking stick (and Theo’s arm) and just slowed down. Quicker movements impact the back immensely. Quicker walking strides bring instant pain for me.
  • Learn some Alexander Technique (everyone should do this pain or no pain)
  • Am I allowed to recommend a decent bubbly?
  • No heels, I avoid transport as much as possible.
  • If you feel anyone doesn’t understand you and that you have to cancel all the time, say ‘bye bye’! The angst of this caused me so much pain until I learned to put myself first.
  • If any practitioner looks at you strangely when you describe your pain, look for another one.
  • Don’t get caught in the cycle: Good day brings a bad day, a bad day brings on a good day, try and level it out.
  • Don’t ignore the pain. Try anything to prevent pain from starting, the longer you can prevent the pain from flare state, the more you make progress.
  • It’s important to believe that if you have PN you can get better. When you’re in pain you never think it’s going to end and progress takes months to see but now when I look back I realise I have been progressing.
  • I know what many readers might think ‘her pain isn’t as bad as mine’, I used to think the same when I heard other stories. I was the worst patient all practitioners had seen. I went through endless months where I couldn’t lift a glass, could not stand barefoot, noise and the vibration of my own voice hurt and I felt I had a surge up my spine all the time. I was existing, I wasn’t living, I thought there was no solution for me, in fact when I was introduce to my Neurosurgeon I couldn’t stand or sit I was at my wits end and asked him if he could chop my coccyx off I was so desperate. That’s when I had my stimulation device implanted and life started to change.
  • My journey with PN has stemmed from an untreated injury. Where I thought I’d be fine and kept working, I really should have been told to stop putting pressure on this nerve. Of course that’s difficult because everything hurts, even a storm approaching as barometric pressure is a trigger, but it wasn’t until I listened and  began treating the issue that I began to gain some quality of life.
  • And one more thing, medication. Western medicine loves to pile it on but you need to remain ‘yourself’ and medication strips that. This is my opinion, but once I decided to accept I had a serious issue and changed my lifestyle, I ended up on very small amounts of medication and that’s when the creativity was able to kick in and in itself that is therapy. It’s important to learn to live with the capacity you have… and strangely enough since doing this I’ve started to get better.”

A little bit more…

“I’ve managed to put a book together, not many words, a sort of creative story on my pain journey, a companion to others in pain. It’s available for order.

We would also love for anyone and everyone to share our story and info on social media to help us get the message out to as many people as possible.”

See more

Theo and I, live on The Scheme Project’s broadcast

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Theo Soula Live In The Studio

Live In The Studio Scheme ProjectDoing my bit again for injured workers and hoping that sharing my story will bring positive change to the primitive Workers Compensation system in Australia.

Both Theo and I attended today’s live broadcast with Kris Vanston, Simon Toppin and their team to discuss the aims of The Scheme Project.

My specific rants are;

  • the inadequate methods of assessment for pain impairment within the system,
  • the out of date Accident Compensation Act 1985 and limiting AMA Guidelines also used for assessment,
  • the ‘Independent’ Medical Examinations (which are certainly not independent), and
  • the putrid investigation methods, (actually I could go on)…

Basically the whole system needs an update, this is not quality insurance or appropriate and respectful treatment for any person living in Australia, or anywhere else for that matter.

It’s time to speak up wherever and however you are involved with this system and contact The Scheme Project to contribute your experience.

Listen to the live broadcast here. Sign the petition or pledge funds so The Scheme Project can produce their documentary.

Happy to be stars of The Scheme Project

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Soula Theo On Scheme Project

Soula Theo On Scheme ProjectMy rants are plenty in regard to the WorkCover system and my efforts to express the limitations and lack of support I’ve experienced as an injured worker for almost 7 years have been endless. All efforts have led to the usual dead-end letter from a WorkSafe Agent, Government body, WorkSafe themselves, if not the dead silence and ignorance that’s on offer for most workers’ concerns.

I was ecstatic when I heard about Kris Vanston and The Scheme Project. and I offered to jump on board and help in any way I could. Theo and I have signed the petition and have both made our pledges. Recently we took our support one step further and spoke up in front of the cameras for The Scheme Project’s Pozible campaign promo. (more…)

$6 Billion woman and the $600 Million Girl

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$6Billion woman and the $600Million Girl)

the PELVIC PAIN report

“Pelvic pain, while common, is often a hidden burden to the lives of many women. With emerging national and international knowledge about pain and the heavy toll it poses on individuals and society, it is timely that this report ‘The $6 Billion Woman and the $600 Million Girl’ raises pelvic pain to public attention as an important health issue. This call for action is overdue in a much neglected area of health and healthcare impacting the lives of so many women and girls in our community.” Dr Christine Bennett, MBBS FRACP Master Paed. Professor and Dean, School of Medicine, Sydney. The University of Notre D

This report is an Australian initiative to address human and fiscal burdens associated with conditions causing pelvic pain. It provides solutions to improve women’s health services and outcomes. The intended audiences for the Pelvic Pain Report are state and federal governments, funders, clinicians, consumers, allied health care professionals, researchers and research funders.

(Excerpt from $6 Billion woman and the $600 Million Girl)

Addressing pelvic pain must be a cornerstone of that commitment.

The purpose of this report is to identify the issues in diagnosis and management of pelvic pain, and to provide some solutions to in3luence the future health outcomes for Australian women and girls. Working with Government, Medical Colleges, af3iliated organisations, societies, faculties and those affected by pelvic pain conditions can assist in the implementation of the recommendations that will guarantee bene3its to individuals, the business sector, and society at large. The recommendations have been proposed after strong input from women and girls with these conditions. This has been obtained through the 25 years experience of patient advocacy organisation Endometriosis New Zealand, Australian womens’ case histories, and current Australian and New Zealand social networking comments.

Read more…$6 Billion woman and the $600 Million Girl

Pelvic Pain Steering Committee:

Deborah Bush QSM
CEO and Founder Endometriosis New Zealand,
Advocate for women’s health, and development of innovative health service provision.

Dr Susan Evans
Gynaecologist, Pain Medicine Physician,
Specialist in pelvic pain.
www.pelvicpainsa.com.au
Pelvic Pain SA on Facebook

Professor Thierry Vancaillie
Gynaecologist, Pain Medicine Physician,
Specialist in pelvic pain.
www.whria.com.au

Sami Vanston, Only All My Love

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Sami Vanston In Studio

Singer/Songwriter Sami Vanston spent the day in the studio as The Scheme Project brainstormed ideas for their documentary soundtrack. This song was written in dedication for a victim of bullying who took her own life because of the pressures of the WorkSafe system.

I’m so touched by this and also hopeful that the WorkCover system will no longer be able to sweep injured worker’s voices under the carpet. Social media has given us a voice… and it’s a very strong one.

Please visit The Scheme Project and follow the prompts to the petition if you want this system to change.

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What is Pudendal Neuralgia (PN)?

Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggrevated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

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