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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

Social Media for Pain Education, Pain Australia

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Pain Australia Logo

Social Media for Pain Education by Linda Baraciolli. Published on Painaustralia enewsletter, August 23, 2013

Pain Australia Logo

Social media can change the way GPs and other healthcare professionals understand chronic pain, says pain advocate Soula Mantalvanos, founder of the pelvic pain website Pudendal Nerve.

Ms Mantalvanos also runs a Facebook page, mostly for consumers, and is active on Linked In, where a lot of her interactions with healthcare professionals take place.

Motivated by personal experience, Ms Mantalvanos says pelvic pain is not well understood within the medical profession, something she hopes to address by sharing her story online

“It took four and a half years to get a diagnosis for my pain,” said Ms Mantalvanos. “Everyone I saw thought it was back pain.”

After reading the book The Brain that Changes Itself, she decided to get in touch with Adelaide-based Professor Lorimer Moseley, who was mentioned in the book.

He recommended a physiotherapist in her local area, and in just a few minutes she had an accurate diagnosis – she had been living with pudendal neuralgia.

“The right diagnosis made all the difference for me,” said Ms Mantalvanos. “I’ve been able to get the proper treatment, and my pain has become more manageable.” Continue Reading

Reply to my ‘Fair Assessment for Compensation letter’

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Fair Assessment LetterAfter 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…! Continue Reading

Desktop mag: Creative Practice & Pain Management

Author:
(Article from Desktop Magazine’s feature article: Creative Practice and Pain Management)
Written by Soula Mantalvanos

Origin of Image is a multidisciplinary design studio based in Collingwood that is managed by professional and personal partners, Soula and Theo Mantalvanos. Soula has a rare condition called ‘Pudendal Neuralgia’ which on some days can be completely debilitating. Here she shares some insights into her daily routine, and offers some advice for practitioners dealing with similar predicaments. Continue Reading

The Design Files

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Sean Fennesy photograph for www.designfiles.netI’m on a bit of a media roll at the moment and I can almost hear someone saying loudly, ‘... and that’s a wrap!‘ It feels like Theo and I have accomplished a huge task and it’s time to celebrate.

But wait, don’t go popping your corks yet. Well… maybe a couple! Being inducted into The Design Files world is pretty rewarding and something certainly to be celebrated. It’s just that underneath the facade, a strong undercurrent is always brewing.

In no way do I want to create a damper here but this site’s mission is to create awareness for the hellish ‘p’s’; Pelvic Pain, in particular Pudendal Neuralgia (PN) /Pudendal Nerve Entrapment (PNE) from my perspective (I know, I just used another word starting with ‘p’!). That means, good and/or bad, I’m going to post it here. So I’ll clarify now, this post is a very positive one. It’s about standing up, facing the world which requires courage, strength, being understood, supported, alot of struggle, and a damn load of management skills.

After completing our ‘Customising for Soula’ renovations, the search for treatments that I responded to, and deciding to attempt work with my home setup (and my super Theo), it felt like we began living life again instead of treading its waters. By no means can I rely on myself or get through the day without Theo’s help, nor am I sitting as I please or have a decent amount of mind stamina, but I can say, ‘I’m working’. I’m also creating. Now I believe I will achieve, I can do, make, plan, dine, create, think, walk, sit… all, sparingly, minimally and slowly, but I CAN. I have ability to plan a day with.

Media…

Theo and I had to remain realistic in our search for someone to portray our accomplishments, and had to expect that noone was going to understand PN. How was anyone going to describe it, how was anyone going to believe it by looking at me, by seeing our place? The considerations were many, after all the general consensus is if you can’t see pain, then it’s not there, a huge part of the pain battle. We asked ourselves if we risk the judgement, ‘yeah right sure she’s in pain‘, and then we thought about the horrific WorkSafe investigators!!!! That’s when we realised we had to go for it. And not only did The Design Files founder Lucy Feagins share our creativity on her brilliant blog, but her address and understanding of our space and lives couldn’t have been more spot on or more supportive of PN. It puzzled me that Lucy could understand it when others struggle so much. Continue Reading

Struck to the pelvis

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I wasn’t going to say anything about my experience with the intense thunderstorms we had in Melbourne a couple of weeks ago, but the more I think about it the more I think I should share. Given I used to get feelings of ‘surges through my spine’ from loud noises, frightening sounds (yes, even in movies!), from vibrations, from singing, etc etc prior to my implant and latest nerve blocks, I realise this might be an informative experience to share.

What happened?

I was walking to my studio from where I had a clear view to the sky through our balcony doors when the largest strike and thunder occurred Continue Reading

My_Space, My facade, living with Pudendal Neuralgia

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Sunday Style My SpaceWe don’t usually love media, but a little attention after some lengthy hibernation from work was bound to be very valuable for our (Theo’s and my) 12 or so year old business, Origin of Image. The lovely Sunday Style (Herald Sun) offered an interview in their ‘My_Space’ feature… hmmm, quite funny for us as there’s nothing ‘my’ about ‘our’ life. We share work, living, we even share Pudendal Neuralgia (PN). Continue Reading

Over to Ms Soula

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Ms Soula by MarijaIvkovic

I remember the very moment my new project completed the mind development stage and entered the reality realm. It had me jump up in my aeroplane seat; and I could almost reach out and touch it… I mean her.

Most of you know, I have a love for character. Recently, I had also been influenced by our trip to Italy and all the Pinocchios and beautiful Venetian masks. Add to this the time I’d been desperately waiting for, the time when the pain would subside and allow for a new phase of life to begin, and my project formula was taking shape – finally! Happiness, character and a big story to tell. 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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