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The pain

Reality posts on my Chronic Pelvic Pain Story Facebook page

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Recoup Off To The ParkI thought it might be a little more realistic to post ‘status’ reports as I battle on with PN. Most often I try to be positive and hopeful but the reality is PN is nothing but hardship, sacrifice and loads of pain.

Instead of bombard my website with these status reports I chose to write these on my Facebook page. It also makes it easier for me to provide support in the form of  ‘live’ communication. I can keep posts short and they can be posted from the phone more regularly. The website tends to have ‘major’ status updates, I felt I needed to comment about the day-to-day struggles.

To followers who aren’t aware of my FB page I’m posting today’s ‘Reality update: Shopping (if you can call it that)‘ so you can decide if you want to follow these ‘reality posts’. If my memory serves me correctly you won’t need an FB account to see what I post on this page. Continue Reading

Festive cheer or is it festive fear?

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Christmas WrappingI’ve come to another checkpoint, the end of the year always seems to call for a summary and with PN I won’t be summarising any grand bonuses, monumental achievements or any other events that suffice to the amount of days and hours that passed. In fact, the biggest blocks of time go on rest, treatment and wondering if this pain is actually ever going to end.

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?

I know that sounds negative for someone that managed to finally get back into the studio, made Christmas wrapping (above), who contributed to her design company, who directed Art and Chronic Pain – A Self Portrait, and who wound up planning a documentary to create awareness for the very issue that holds her up day in day out, but, I’m slowly realising although I progress, PN is consuming my life more and more (and Theo’s!). PN has infested into my creativity, it’s become a monster outside my body as well. A monster now guiding me to forget my privacy, suck up the imposition and ego, and play a lead role in the name of PN awareness. How on earth did it come to this? And where on earth is it going? (You won’t believe what’s next!!) PN is truly fixated on me, in me, around me, it’s becoming the PN never-ending story. I can’t help but wonder at times, at what the point did this become my job? Continue Reading

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

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.

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

My prepain life, selling Winter Light greeting cards

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WinterLightGreetingCardsI was preparing for my second solo exhibition, Winter Light, consisting of oil paintings and prints of Parisian facades when my fitball went pop and I entered the PN world.  The exhibition was moved to the end of the year and thankfully I had painted almost all the work and Theo picked up on the editioning of the prints. I produced two sets of greeting cards, the first sold out. The ones below are available and can be ordered in any combination.

Purchase via Paypal.

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Card Description

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Size: 155mm x 110mm. No message inside.

More of my work can be viewed at soula.com.au

Winter Light Greeting Cards Winter Light Greeting Cards Winter Light Greeting CardsWinter Light Greeting Cards

Piecing myself back together

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Collage Portrait 5
Excerpt from soula.com.au/blog September 22nd, 2013

I’m having a great and most satisfying time with this self-portrait. From scouring for different pieces of paper, to painting my own, to writing on the portrait, every experimental and contributing part has hit my pain spot.

The word ‘broken’ was so often used by Frida Kahlo, I so understand why even though I don’t have anywhere near the injuries or horrific post surgery trauma she must have suffered. I certainly feel that the solid body I once felt I had is no longer solid at all. Continue Reading

Soula’s PN Weather Update

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Soula's PN Weather Report

Soula's PN Weather ReportIt’s been a while since I posted a personal update but it’s probably accurate to say that PN’s weather patterns need to be documented seasonally. I mostly have turbulence, like it’s sunny one day/stormy the next, or otherwise described as I take two steps forward and about 1.9 steps back. It’s incredibly frustrating. So rather than report all the fluctuating details in between, it’s best to leave some months go by to really figure out the progress. So now, the months have gone by and I can deliver to you, Soula’s PN weather update for September 21, 2013. 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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