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Signing off for 2014 under an Olsen sun at MONA

Author:

Soula At Mona John Olsen Painitng

Or should I say, looking forward to 2015?

Looking forward is more my tune but the changeover of another year, especially with chronic pain, calls me to reflect and to ponder my future.

It’s been three gorgeous months in nurturing Tasmania where I’ve eased my work load, upped my fine art a little, and squished obligations to almost zilch (bliss!). The year will end and sadly I haven’t been able to incorporate driving into my abilities, nor a consistent and regular exercise routine, and Theo is still carrying much of our daily living load… but…

…as I keep stating, finding life balance with chronic pain is really very difficult and I believe ‘we’ are doing very well, yes it takes the two of us, Theo and I. Continue Reading

Melbourne Leader story, Soula bares soul over pain

Author:

The following story was published in support of the current National campaign: Nerve Pain is Different. Please help us raise awareness for those with debilitating invisible pain.

If you think you have nerve pain, talk to your doctor and visit www.nervepain.com.au. Complete the online questionnaire intended to help you explain your pain and take a printout to discuss with your doctor.

Melbourne Leader Mon 1 Dec

Resident shares story of coping with daily agony following fit ball accident

By Nic Price for the Melbourne Leader

SOULA Mantalvanos’ life was up-ended in 2007 when a fit ball she was sitting on burst and she dropped to the concrete floor.

She didn’t think much of it at the time and tried to continue her routine of yoga four times a week and regular walks, but that soon became impossible.

Dealing with chronic pain that made her feel like her “finger was stuck in a power point”, the Collingwood resident was not diagnosed until four-and-a-half years later with severe pudendal neuralgia nerve pain.

As she embarked on a journey of living with pain, Ms Mantalvanos and her husband turned their lives upside down in an attempt to find a better quality of life.

They closed their graphic design studio down (Ms Mantalvanos now works part- time) and even removed doors in their house so she wouldn’t have to open and close them.

“I’ve learned not to lift more than a few kilos, to sit a lot, get in the car a lot,” Ms Mantalvanos said. Continue Reading

My interview with the Australian Pain Society

Author:

APS Pain Recovery JourneyA pain recovery journey shared

(Excerpt from Australian Pain Society’s blog. Read the full interview here)

We recently had the opportunity to interview Soula and gain her valuable insights.
We hope you enjoy this blog post and possibly find some useful tips.

APS: Would you describe your pain recovery journey as having a ‘turning point’?

Soula:     There have been a few turning points but two main ones:

  • Firstly when I was implanted with a peripheral stimulation device which restored my ability to read with the much lower pain levels.
  • That led, shortly after, to my diagnosis which has been the key to my recovery.

APS: What 3 things would you rate as your biggest lessons in your pain recovery journey?

Soula:

  1. Firstly that my body is first and foremost driving recovery, it just needed the help of appropriate treatment. I initially presumed it was the other way around.
  2. That everyone needs a decent explanation of what is causing their pain before they can move on with recovery. In my case that was: the pudendal nerve lives in various levels of an overactive inflammatory state. The why’s, what’s and how’s are secondary information and unique to each person and we may actually never get those answers.
  3. That my lifestyle: Theo (husband) and creativity have been my biggest treatments of all.

Continue Reading

‘The Hurting Strings’ wins International Film Festival Reel Health Award 2014

Author:

Jacinta Cashen, Peter Lamont, Reel health Award 2014Congratulations to Peter Lamont and Jacinta Cashen, who last night, won the ‘ReelHealth’ International Film Festival Award hosted by Monash Health for our documentary, The Hurting Strings – An Artist’s Story of Pain.

The film category entries were: Get Well Soon, The Journey, Your Voice, Behind The Scenes, and Mental Health and The Hurting Strings won The Journey category.

‘This category is a personal account through the journey of health. It may be a patient’s experience, or a doctor trying to implement a new technique in a hospital. It may be the career pathway of a nurse from novice to expert or the evolution of health issue in modern society.’

I must sound like a broken record by now, but once again, I am left bewildered by my chronic pain journey and the contrasting experiences that go from excruciating pain to exhilaration. Above all, I feel incredibly privileged at the opportunities presented to me and so happy to be able to help others by communicating my story. I could not have done this without Theo, my family and of course Peter Lamont and Jacinta Cashen. Continue Reading

Semi Finalist for the Doug Moran National Portrait Prize 2014

Author:

Ms Soula With TheoAlmost 150 works were selected from nearly 1,000 entries.

2014 judges were, Edmund Capon AM OBE, and Lewis Miller, Australian Artist. Both viewed all entries and made their selection of semi finalists.

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. Continue Reading

ANZCA Bulletin: Simple Accident Leads to Life of Pain

Author:
(By Ebru Yaman, ANZCA Media Manger. Read the full article)

Soula Mantalvanos Simple-accident-leads-to-life-of-pain-ANZCA-Bulletin-September-2014Research and resources are desperately needed to ensure that fewer chronic pain patients are told to “go home and live with it”.

Soula Mantalvanos was working in her graphic design studio seven years ago when the fittness ball (also known as a balance ball or exercise ball) she was sitting on in place of a chair unexpectedly burst beneath her. Ms Mantalvanos fell from a seated position onto the concrete floor, her sacropelvic region bearing the full force of the blunt fall.

Her husband Theo ran to her side. After the shock settled, she crawled to the carpeted area and her response was to laugh. The pair “had a good old laugh actually – it was such a silly accident,” she remembers. That unexpected and seemingly innocuous accident would determine the course of the rest of her life. Ms Mantalvanos expected to feel sore but better after a couple of days. But the pain continued, intensified and from that moment shaped her days, her nights, her relationships and her ability to work.

It took nearly five years of chasing answers, of tests and interventions, frustration, grief, and constant, unbearable pain to reach a diagnosis. The fall caused nerve damage in the pelvic area, very real but invisible on MRIs, examinations, X-rays and CT scans. Continue Reading

Committment, sacrifice and granting myself the right permissions

Author:

Soula In TassieLast 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. Continue Reading

Cathartic collage, my self portraits for sale

Author:

For sale… well, all except for one… actually, two.

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.

It must have worked, my progress continues and even though it’s very slow I’m ecstatic to know I can plan more artwork. I am creating again, I am my self.

One of the two pieces not for sale (and that is not shown here), is the original piece that I used on the cover of my book. Each of the 500 dust cover jackets comes with four strings attached by hand and is my offering as an original hand touched piece of art by me (well actually Theo had to attach them all!). The book is $39 plus postage.

Contact me if you want to purchase my artwork, these are the original pieces, no printouts will be sold. Paypal or Direct deposit available. Will post safely and securely free within Australia (plus postage outside of Australia).

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Yet Another Comedy of Errors: Act III, the Outcome

Author:

Those on long term benefits should be cut like 'low hanging fruit', Denis Cosgrove wearing my compensation.Scene I

The long-awaited meeting takes place, as scheduled, 11 months after my lodgement of a 93cd application.

Theo and I, together with my WorkCover Assist representative met with the Conciliator and K – a rather gruff and insensitive guy who is representing my VWA-appointed Agent. We have not met him before nor to our knowledge has he been involved in managing my claim. From the outset, it was obvious that he would fight against us every inch of the way. You can well imagine that the spirit of conciliation was lost upon him. He offered no apology for his rude behaviour.

If you do not know, conciliation is a voluntary, flexible, confidential and interest based process. The parties seek to reach an amicable settlement of disputes with the assistance of the conciliator, who acts as a neutral third-party (whilst still abiding by the system’s own legislation).

Just to recapitulate, we had raised three important disputed issues for conciliation:

(i) that part payments for my medical expenses were still outstanding;

(ii) that contrary to the “expert” opinion of my Agent, my working capacity was still limited to 15 hours a week and had not improved since the Medical Panel had examined me nor had I shown that I possess any new skills believed to be contributing to this added work capacity;

(iii) that my Agent was claiming that the date they are required to begin any payments is the date from when I “completed” the 93cd application (September 2013), and not the date on which I had actually lodged the application (June 2013). Until I had provided a current Tax return (which was a mandatory requirement and for the ATO is March of the following year), the application remained invalid; furthermore they consider my early June capacity date to be irrelevant. Continue Reading

Insurer acts under WorkCover’s big circus tent

Author:

April 17, 2014 (shared post from Theo to Soula’s Chronic Pelvic Pain Story Facebook page)

This SICK system has to be stopped…Soula Theo Walking Combi InvestigationSoula Theo Walking Combi Investigation
This makes me sick….!Ever been filmed when you didn’t know it? These are a couple of stills of surveillance footage from a WorkSafe Victoria agent (who I can’t mention… but there are only a few – from 2012 mind you) attempting to catch out Soula.Guess what WorkSafe Victoria agent??? Soula can walk!!! She never said she couldn’t.

This is very poor, extremely disgusting and a waste of time. The WorkSafe Victoria agent is trying so hard to make our life a misery but it’s only making us fight harder.

Anyway…., at least our dog Zephyr looks good in the clip!


April 16, 2014

I got some mail today. Theo had to carry and open it, the pile of papers were too heavy to lift!ConciliationMail-04

It’s astounding the levels the WorkSafe Agent will stoop too (which are the levels WorkSafe obviously set) in order to avoid their responsibility with my WorkCover claim. I’m going to keep up with this documenting as I want to encourage other injured workers to fight these pathetic insurer circus acts. It’s unacceptable, not to mention, not what my WorkCover premium was paid for. Where’s my ‘quality income protection’, where is my return to work help, and where is my income and medical financial help?

This is what the conciliation process looks like and for those of you who missed the full story read about it here. The conciliator assigned to my conference on May 13, has so kindly taken the time to photocopy and send me the copies of what the WorkSafe Agent has sent through in support of their case to reject my part payments and medical reimbursements. I’d like you all to give me your opinion actually. The shots below include copies of the public information I’ve posted about The Design Files media Theo and I had, my Doug Moran Semi Finalist entry, my drawings of Lynn, other artwork etc… I know the insurer is showing great faith in my art career and somehow trying to state I’m actually making some kind of wage from my art (how lovely of them to do so), but I’m wondering what the insurer is trying to say by posting images of my home? Clearly not including the info as a positive information, so why is that in here? Is an injured worker meant to have a certain appearance/home, are they not allowed media… I’m a bit confused? Continue Reading

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Definitions of pain

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 aggravated 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.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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