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‘Ouch’ just doesn’t cut it!

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I-feel-so-frustratedAnd neither does repeating, ‘it burns’, ‘it itches’, ‘it’s like fire’, ‘I get spasms’, or the various other words people in pain have to repeat for each consult in the effort to be understood.

Pain Train’s whole purpose is to help patients and their pain management teams communicate beyond these basic words. Pain Train saves the patient the additional pain of having to repeat their history and other related details at each appointment.

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I do I do I do believe in spooks, I do I do…!

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Cowardly Lion drawing ©Soula MantalvanosIt’s my anniversary today. Seven years from the day my (and Theo’s) life changed. I’m heavily considering changing my beliefs… did I break a mirror?

I’m not superstitious, but if it means owning up to breaking a mirror I’d be more than happy to change my views. So long as at 11am today, this Pudendal Neuralgia (PN) issue goes away and my original, very well, non aching body, returns to my hardly affected exterior.

‘But hang on Soula, keep writing, unfold and expand those squally thoughts’, thoughts that flow from positive and grateful, into negative and hopeless, and end up reality checks that tell me, ‘well, you’re making progress‘. This is a mantra in my mind daily and I have to keep reminding myself that the mantra once was simply, ‘you’re getting worse‘.

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Festive cheer or is it festive fear?

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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?

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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.

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Soula’s PN Weather Update

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Soula's PN Weather Report

It’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.

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Next stop: Traditional Chinese Medicine with Raffaele Vavala

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Acupuncture6Although I’ve tried acupuncture many times before, I’ve never felt as much of a response as I am feeling now after my four sessions with Raffaele Vavala. It’s possible my body wasn’t ready for it, being in ‘the thick of it’ until about a year ago my onion was just too big!  But I also believe some practitioners do have more of a gift than others and Raffaele is gifted!

The consultation methods make great sense to me. My scans have been considered, but my tongue, palms and pulses on both wrists do all the pain and story telling. These body parts describe a system that is quite debilitated after dealing with the years of Chronic Pain, an issue Raffaele understands in-depth. So when I speak of sounds hurting, activity accumulating into a flare up fire-ball, fluid retention, my legs unable to move with extreme heat conditions, the desperation for Western intervention in the form of an implant and nerve blocks, my exhaustion that arrives with the pain and ‘protects me’ by encouraging me to sleep, the inability to focus, reach out and ‘just move that thing’ or carry out a simple task, the ability to create seeming too exhausting, Raffaele understands… ALL OF IT.  He reminds me of my diagnosing physio, and for once I’m the one staring in disbelief at their look of complete understanding for me (when other practitioners screwed up their faces or frowned at my statements).

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Peeling onion layers… “No.6!?”

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Onion

Another year gone by since the pop! Now I know what practitioners mean about peeling onion layers. My onion layers have gone something like this:

  1. Removal of pelvic thickened ligament
  2. Peripheral stimulation device implant
  3. Diagnosis
  4. Nerve blocks
  5. Medication
  6. … Could it be my Traditional Chinese Medicine?
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Increasing employment opportunities for people with disability

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Australian Government Logo

Increasing employment opportunities for people with disability.

Minister Shorten seeks proposals on ways to boost employment participation for people with disability, discussion paper seeking public views on how best to achieve reform.

The discussion paper, Improving Employment Participation of People with Disability, seeks public views on how to best achieve reform, including:

• how to promote and improve equality for people with disability in employment and in the workplace
• how to support employers to identify and remove barriers to full and equal participation of people with disability
• how to promote the removal of all forms of discrimination on the basis of a persons’ disability
• how to improve workplace consultation between employers and employees on issues concerning people with disability in the workplace
• how to improve the productivity and competitiveness of Australian business through the advancement of people with disability in the workplace.

The Government would like to hear from all interested parties, including:

• people with disability, their families, carers and community representatives
• employers and employer representatives
• current Employment Service Providers
• state and local governments
• unions and other employee representative groups

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Building blocks… I hope!

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I’m not yet clear about the effects of Nerve block No. 3, but I’m calling it… I’m going to be positive… I believe I’m building! It’s just a sorta three steps forward and two back situation.. I hope.

So far, my building blocks go like this:

• Nerve block No. 1 (December 7, 2011),
• Nerve block No. 2 (April 18, 2012),
• Nerve block No. 3 (November 23, 2012)

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Back to life

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Soula's Business Card Origin of Image

…please gear up with me, imagine the drum rolls and the biggest mountain you can imagine with me standing on the tippy top yelling because this IS real, IT’S true, IT’S official:

I’M BACK AT WORK!!!!!!!”

No, I’ve not overdosed on my medication and the stress of a chronic pain issue has not damaged me enough to be hallucinating.., I. AM (wiggling heaps but all the same). SITTING. IN. A (very nice ergonomic). CHAIR. TYPING. THIS. POST!!!!

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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.

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