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My interview with Pelvic Zen coming up this week

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Sullivan Physical Therapy StaffI was contacted by Sullivan Physical Therapy a little while back, asking if they could have Sullivan Physical Therapy’s clinic listed on pudendalnerve.com.au. The clinic specialises in women’s and men’s health conditions related to the pelvic floor and is located in Austin Texas. But after visiting their websites and seeing all their amazing work, I offered that we take the post further and see if we could collaborate to create more awareness for pelvic pain, after all that is the purpose of my advocacy, and Sullivan Physical Therapy’s aim is to reach and help people with pelvic pain. And collaborate we can! These guys are so onto everything pelvic pain. Their therapists are actively organising their own radio shows, blogs, and this is the sort of social media that links perfectly with other supportive pelvic pain networks which then allows us all, to reach more people.

Caitlin McCurdy-Robinson Pelvic Zen, is a show designed to promote pelvic floor wellness in men and women. Caitlin McCurdy-Robinson, who hosts the show is a Physical Therapist at Sullivan Physical Therapy. This is our first collaboration event and you’re all invited to the interview. I will be speaking with Caitlin this week;

live on Thursday 10th at 5:30pm Austin, Texas (Central Standard Time) / Friday 11th 8:30am Melbourne Australia (Eastern Standard time). Continue Reading

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. Continue Reading

Visual Pursuits book review on Art & Chronic Pain – A Self Portrait

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I’ve mentioned before I live in an art hub of Melbourne. I’ve also made it clear how much I love my community and how much the people living beside me have helped me manage my pain by energising me with their friendship, their creative work and some most distracting conversation.

These inspiring creatives (across all forms of art media), make me feel at ease, even as my painful-Soula-self. Whether in pain, feeling (or not) up to outings, when I appear leaning and sitting in all sorts of positions, and in some cases requiring their help to carry things home, or leave them behind for Theo to pick up later, I always feel accepted and loved, and that makes me so damn happy!

So, when one of those divine people, Marguerite Brown, reviews my book, I feel quite chuffed. In fact more than chuffed, honoured, that she spent her time to write a review in her own beautifully articulated words and publish it on her amazing blog, Visual Pursuits.

For anyone considering purchasing my book, or if you already have, I recommend Margue’s insight, it’s a brilliant review. Here’s a snippet:

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.

Soula weaves her story through a spare yet effective use of text, combined with evocative imagery that gives visual form to one of the most insidious aspects of chronic pain, its complete invisibility to the outside world.

To convey the loss of control over her physical being that has been presented by Pudendal Neuralgia, the artist commissioned a marionette in her own likeness by marionette maker Colleen Burke.  The result is an exquisitely crafted and hauntingly realistic version of herself in doll-like form. Soula paints, draws and collages representations of the marionette at various points throughout the book.

Read more…

Soula and Theo interview on Gail Zahtz’ Health and Design blogtalkradio show

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Gail Zahtz PromoFor those that missed my live interview today with the brilliant Gail Zahtz on her Health and Design blogtalkradio show, you can listen again here.

The plan was to talk art, design, and pain advocacy but we weren’t about to fit all that into two hours, and especially not when Theo joined in to add his valuable perspective about living with someone who has chronic pain. Continue Reading

Pain Matters

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Discovery Channel Pain Matters Header
(from Discovery Channel CME)

100 million American adults live with chronic pain. That’s more than cancer, diabetes and heart disease combined. According to the Institute of Medicine, the high prevalence of chronic pain suggests that the condition is not being adequately managed. Undertreatment of chronic pain creates large costs to the healthcare system and the U.S. economy; we spend more than $560 billion in the U.S. each year on chronic pain-related healthcare costs. Moreover, chronic pain can carry significant physical and emotional burdens.

The Institute of Medicine has called for a better understanding of the impact of pain in an effort to reduce its toll on the people who suffer from it including the impact on their economic, physical and emotional wellbeing.

Pain Matters seeks to do just that. The documentary explores what chronic pain is, its individual and societal impact, and the future of pain management through the stories and struggles of six individuals living with chronic pain and their loved ones, as well as perspective from leading national experts in pain management. For more information about chronic pain and the documentary, please click here.

Pain Matters from Discovery Channel CME on Vimeo.

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

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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.
Continue Reading

The Hurting Strings, my crowd funding campaign

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Campaign message

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 hiding of pain if this happens.

One of those strange-but-true occurrences in life found me introduced to handmadefilms.com.au and I now have a unique opportunity to help with my PN message. The intended outcome is to have a documentary film made that will be free for practitioners, therapists and people in pain around the world, and for them to share for educational and therapeutic purposes.

Early diagnosis of PN is crucial for quality of life, in fact if I had been diagnosed sooner, I believe I would not have such a serious life long pain issue now. I want to change this bad life experience into something good… into Pelvic Pain education. I’m hoping you can help me raise some of the production costs.

Watch below and contribute via PayPal. Follow our progress by subscribing to The Hurting Strings feed.

Thank you.

The Hurting Strings, an artist’s story of pain from Soula Mantalvanos on Vimeo.

The book: Art & Chronic Pain – A Self Portrait

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SelfPortraitBookDustJacketYes, I’ve found another medium to express my pain and you can own your own copy of it!

I didn’t see the point of creating a long description of my living with pain, sharing my tips, turning journal entries into a pain story. Afterall, first and foremost, before the person in pain, I am an artist… so my book had to contain many pictures and few words, just 32 pages in fact, but I believe it’s a complete story. It doesn’t hold the solution for PN but it’ll allow you to explain it to someone else, leave it on the coffee table, and it will be light enough to carry around.

Art Chronic Pain Soula Mantalvanos-01

Above all I created it to express my experience so far and so that it is a bit of a companion to another PN family member. The idea was for the reader to feel empathy in a world where no one seems to understand, and to ease the pain as you look through it.

Continue Reading

Doug Moran National Portrait Prize Semi Finalist

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Communicating pain…

Self Portrait, Art and Chronic PainAbsolutely 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 it and am stoked to be considered for semi finalist. Self Portrait (art and chronic pain) will be heading up to Sydney next week for the next round confirming finalists for the National prize.

View all the semi finalists here, read more about the prize here and view the 2012 finalists here.

About the portrait

A self portrait of a self portrait. A marionette is the only way I thought to express my living with chronic pain. I lost my independence and yet the debilitating qualities couldn’t be seen on my exterior. No one could grasp my torment by looking at me, in fact I looked ‘well’. I lost my control in life and the pain directed my days for many years… for some days it still does.

This painting of me as a marionette, I believe, is a fitting self portrait of me, perhaps even for anyone else with any kind of invisible pain.

Currently this is how I see myself but I remain hopeful that this image will change one day.

Follow the pain story: facebook, rss, twitter.

On A Current Affair tonight!

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A Current Affair

A Current Affair 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 it and its treatment, predominately focusing on the peripheral stimulation implant. PainAustralia who have become a great support for me and who recently interviewed me for this story; Social Media for Pain Education were contacted initially by A Current Affair asking if they could recommend anyone who had nerve pain and had found relief from a stimulation implant.

Admittedly a little weary of ACA’s style of filming and my preference to not impose my pain onto others, I still agreed realising I could reach many chronic pain sufferers and also give them courage if they were considering a stimulation device implant.

So, here I am, and tonight there I will be, on A Current Affair in all of chronic ‘neuro’ pain’s putrid reality and sharing the modern chronic back pain treatments that truly did save my life and now have me living again. I’m hoping they won’t cut out the emphasis I made about my Theo treatment, he truly is my largest form of pain relief.

And while I have this great opportunity to raise awareness relating to chronic pain, I’d like to add that in no way has my WorkSafe Insurer contributed to any of the costs for this life saving, $60,000 device. I’ll be forever grateful to my private health insurer who forked out a whopping $54,000 of the expense. All other medical costs relating to my injury including the $6,000 gap for the device (and any treatments over the last two years) have been seen as unrelated to my work injury by the WorkSafe Insurer. The implant in particular was not covered on account that my Neurosurgeon’s letter was seen as insufficient. Below is a copy of my surgeon’s letter to my WorkSafe Agent case manager (without personal names) and the snippets of correspondence relating to the matter (I have loads of paperwork but basically this sums up the support (not) from WorkCover: 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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