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My Peripheral Stimulation implant

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I’ve had quite a few emails asking about my implant so I thought I’d create a more informative post. Given this device was a life changing treatment for me, I really haven’t given it its due attention. Implants are becoming more common for the treatment of pain, so it’s definitely worth getting my experience online.

I have to start with the pre implant status so you can all understand the impact the peripheral stimulation device had made for me (and I’ll call it my ‘stim’ if you don’t mind). I had just had diagnostic cortisone to my coccyx and had three wonderous days of complete relief. Hard to understand that’s even possible when a person can’t sit, stand, function without great levels of pain at every moment of the day.

I had presented to so many specialists (note the pages from my book, Art & Chronic Pain – A Self Portrait, of what my calendar looked like from 2007 -2009) and was labelled ‘the most severe case’ often. I had not been diagnosed as yet, I was lost, nowhere else to turn.

Self Portrait Book Calendar page ©SoulaMantalvanos The complete relief response I had from the cortisone shot to the coccyx was ‘progress’. Has your practitioner told you in investigating your PN treatments that you might learn ‘what you don’t have or don’t need’? This is what’s meant by ‘diagnostic’. You almost have to work backwards with PN, cross off ‘what isn’t the case” and in my case, I had learnt I didn’t have ‘mechanical’ pain, I had neuropathic pain. My ‘mechanical’ surgeon, Mr Roy Carey, then handed me over to Professor Peter Teddy, and I have much admiration, respect and thanks to express for that moment. (more…)

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.

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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). (more…)

Italian lifestyle, perfecto for Pudendal Neuralgia

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Roman style Anti burst fitball (Image: Now this is what I would call an anti-burst fitball!)

I’ve just come back from Italy. I lived a dream, that’s exactly how it felt. I lived it with my husband Theo. Without him, clearly I would not have been going much further than the Italian restaurant up the road, but aside from the obvious, seems like Italy was a great destination choice.

Obviously there had to be some turning point in my Pudendal Neuralgia (PN) life if I was ever able to think about travelling again and the turning point for me was my stimulation implant.

Just as my senses returned, my dreams did too and my dreams always include travel. That’s what we did every year before my accident, it was part of our normal and fortunate life.

So with my returned senses came dreams, with senses and dreams came diagnosis, with diagnosis came, finally, appropriate treatment, and with the right treatment came great pain relief and some much deserved and needed increased capacity. I feel I’ve arrived on a very high mountain but had to crawl all the way up over 5 1/2 years.

So, here we are on the mountain, I mean, in Italy, and boy did we pick the right place! Not only did we have a divine holiday but we stumbled on what feels like a miracle treatment for my form of PN and that was part of the Italian lifestyle: bidets and siestas.

I set off very prepared having had nerve blocks and begun Endep before I left Melbourne. I was taking a quarter of a 10mg tablet every second day and increased the dose gradually to 3/4 per day by the end of our five-week trip (and by then I was well and truly quite happy to sleep all day even though it was Italy outside. I had to knock 1/4 off my dose).

Five weeks, yes five weeks, with PN I don’t go anywhere, do or see anything quickly. If I’m making comparisons with the old Soula, I need much more time as each 24hr day now is equivalent to 1/3… if I’m lucky! I also have my human walking stick, Theo, and another light, adjustable and foldable one. I had a few hundred gels and insoles with me and left any kind of shoe with a heel on it at home (along with any handbags which I ditched a while back anyway). I also took my ice pack and made sure I didn’t need to carry anything. Yes, you guessed it Theo carried everything, he resembles a mother with a baby bag! Our destination and time of travel choice, Italy in spring, was based on being able to wear light clothes (winter garments add weight which means pain) and accommodation was booked in city centres to avoid any daily commuting. (more…)

Inspiration from Henri Matisse

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Henri Matisse drawing in bedMatisse in his Own Words

Creativity takes courage.

Derive happiness in oneself from a good day’s work, from illuminating the fog that surrounds us.

Work cures everything. (more…)

HowToCopeWithPain.org

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I feel I’m exercising my brain when I read an article that sparks more thought and leads me on a hunt for more and more information and the process all results in gold! It might not necessarily be what I was looking for but a lovely surprise nevertheless (and some excellent resources).

I had one of these info-journeys last weekend. It began by reading Imagine: The Science of Creativity in The Saturday’s Age (Melbourne 7th April) by Jonah Lehrerare, and coming across this quote: Sleeping is the height of genius by Kierkegaard. It made me think about another possible cure for my issue (I know, very far-fetched but imagine if my brain could be programmed to make me live/dream all the activities my pudendal nerve won’t let me do by night?! Imagine?!). So I went to my favorite, most trusting online resource, no, not Google, Body In Mind (more…)

Mouth and Foot Painting Artists

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Welcome to the Australian web site of the Mouth and Foot Painting Artists (MFPA). Formed in 1956, the MFPA is an international, for-profit association wholly owned and run by disabled artists to help them meet their financial needs. Members paint with brushes held in their mouths or feet as a result of a disability sustained at birth or through an accident or illness that prohibits them from using their hands.

Read more on the MFPA official website

Who says I can’t travel?

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I know I might be clutching at straws again but at the very least 360 cities is some great distraction and very light in capacity cost. And it’s great planning for next time I have some serious pain relief (like a nerve block). I’ll be off like a rocket! Ok, maybe not a rocket but compared to the usual pace it’ll feel like it.

First stop: Paris!

Art and distraction

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My creativity has been one of my main coping mechanisms through my chronic pain life. It’s the place I go to feel free, release the steam, express my pain, and to get distracted to the point of pain! But it’s worth it every time. There isn’t a lot I can achieve with my capacity so one drawing, one painting over months, one post on my blog… anything, it’s all worth it.

Art helps with many health issues, even if you can’t participate, finding a piece that connects with you can also be helpful. And it’s something you can do from your own comfy seat (if you have one, I’m yet to find one!!).

Here are a few art sites that you can either contribute to or simply subscribe to for regular, beautifully distracting, updates. They are not all related to pain, I, for example try and avoid talking or expressing pain and rather choose to paint my happiness, it just feels like I don’t get away from the issue otherwise. I also prefer to seem like the old me, it’s my target. I like saying the words ‘I painted, I did, I am going to’ without having to add the ‘it took/will take me ages’.

Soula (my art)

I’ll start with my website: soula.com.au and my blog: soula.com.au/blog

redbubble.com

Gallery of Pain. The Art of Releasing Emotional or Physical pain..Ambience of Pain.

PAIN Exhibit website

Thank you for visiting the online version of the PAIN Exhibit, which showcases approximately 100 pieces of art from people with chronic pain from across the globe.

Artwhatson

artwhatson.com.au is a meeting place for art lovers, artists and galleries. Our e-news delivers a weekly snapshot of what’s happening in Australian art.

jennierosenbaum.com
facebook.com/contemporaryfigurativeart

Jennie works to maintain the image of the nude in art and writes a blog about censorship in art. She also leads a group for artists with disabilities.

Life Beyond Pain

Personal stories of struggle, strength, and success expressed through art.
Living Beyond Pain showcases the challenges of, and responses to, chronic pain in daily life. It contains artistic expressions of success—real stories of coping, managing, and moving beyond pain.

Kurt Wörsdörfer (Headcrime)

To the German artist, known in art circles as “Headcrime”, music provides instant visual associations. Literature, history, art, archeology and, unfortunately, life experience with chronic pain, influence his work.

dotsandyarn.wordpress.com

Music, Opera, Knitting, Food – the essentials as far as we are concerned.

smlacyart.com

Art opens up something inside of you that sometimes you forget is even there. Art transforms. It brings hope, peace and possibility. It brings life.

Arts Project Australia

Facebook

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Since my accident many things, like facebook, have taken on a new meaning. It’s a great way to socialise (actually, let me be honest, its a great distraction) especially if you can’t get out easily. And the best thing is you can choose to participate as much or as little as you are able to. (more…)

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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.

Pain Train my online health record

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