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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.

Pain Train offers patients a way to also show their friends and family their profiles in the hope they can also better understand their loved one’s experience. Continue Reading

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

Author:

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‘. 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’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

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). Continue Reading

Increasing employment opportunities for people with disability

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Australian Government website header

Thank you Minister Shorten and thank you too to my wonderful employer for changing their setup to accommodate me and my health issue. Would you employ someone with a disability? Do you have ideas for employers so that they can employ people with disabilities? Minister Shorten wants to hear from you…

Excerpt from the Australian Government’s Department of Education, Employment and Workplace Relations webpage. Please read and submit your thoughts.

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. How to provide a submission.

The Australian Government is committed to creating lasting opportunities for employment for people with disability.

To ensure that the most vulnerable Australians are able to find a job, earn a wage, enjoy the dignity of work and prosper from satisfying and rewarding careers, a consultation process has been launched to seek proposals on how best to boost employment participation for people with disability. 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

Providing proposals (submissions)

It is preferred that submissions be sent by email (Word or RFT format), they can also be sent via post.

Email submission to: dmh@deewr.gov.au

Post submission to:
Director
Disability and Mental Health Policy
Department of Education, Employment and Workplace Relations
Location: MC50 Level 5
GPO Box 9880
CANBERRA ACT 2601

Submissions will close at 5pm (EST) 15 February 2013.

Posted submissions must be postmarked before 12 February 2013 to be accepted. You will receive confirmation from the department that your submission has been received.

For further information contact dmh@deewr.gov.au

About submissions

Written submissions will be treated as public documents, unless you clearly mark on your submission that you do not want this to occur. Automatically generated confidentiality statements in emails are not enough to note your intention that your submission should remain confidential. Submissions may be published in full on this website, including any of your personal information provided. Personal information about third parties will be removed from submissions before they are published, unless consent from those parties has been provided. A request made under the Freedom of Information Act 1982 (FOI Act) for access to a submission marked confidential will be determined in accordance with the FOI Act.

Official page, read more…

 

 

Building blocks… I hope!

Author:

BlockFeature

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:

My current situation is a life setup based on my husband Theo’s help all day. I could not have returned to work without his help or the home/office setup we have. I’m still not driving and my weight limit goes from 0 – 3kg. I haven’t established a regular basic living routine (this includes a daily walk), still unreliable to myself!

Continue Reading

Back to life

Author:
Soula's Business Card Origin of Image

Soula's Business Card Origin of Image

Words… searching, searching… any second now… … … almost… actually, nope.., it’s not going to happen.  As if there’d be ANY words for me to explain how I feel writing this post. So 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!!!!

And, I definitely mean to sound excited. After all, I conquered a beast that came pretty close to defeating me and keeping me virtually still for the rest of my days (sadly I’ve not killed it completely but I’m still hopeful!).

It’s been 2,063 days since my ball went burst…

…or

5 years, 7 months, 23 days (including today)

…or

178,243,200 seconds

…or

2,970,720 minutes

…or

49,512 hours

…or

294 weeks (since I’m kindly rounding down but in reality pain calls for rounding UP).

I feel like… like… ME! And there isn’t a greater feeling. 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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