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soula

I am an artist and creative director.
For eight years chronic pain has consumed mine and my husband’s life.
BUT, I am now returning to my creativity with the assistance of modern day therapies. I’m using expression as a catharsis and coping mechanism and as a pathway for the restoration of my ‘self’.

When It Pays to be Dumb

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Since my last follow up appointment with my pain specialist, I’ve been full steam ahead investigating his pain management recommendations.

Together, we reassessed my situation – the pros and cons, can do’s and can’t do’s, and among my specialist’s recommendations was a prescription for compounded pain medications.

Although what I’m blogging isn’t actually funny at all, I thought you would enjoy me sharing the response I received today from my insurer in regard to my pain specialist’s prescription.

At the very least, we could have a huge laugh together. After all, we’ve been through alot of this insurer rubbish together and I feel you could do with the laugh too!

The effort my insurer makes to appear stupid and ignorant in their daily work, and the effort they make to voluntarily communicate their ignorance, today, for some reason (let’s call it this fab new medication) made me want to laugh.

The reimbursement of my two stimulation devices are being ‘officially’ knocked back and so together with this medication knock back, Theo and I will be heading back to conciliation.

But, let’s have a laugh together first shall we? Continue Reading

Participate in a Macquarie University study investigating pain and body perception

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Please, participate in this survey. Your personal experience makes a huge difference to research.

This study is being conducted by Dr Vince Polito at Macquarie University and Professor Lorimer Moseley at the University of South Australia. If you have any questions or concerns about the study please contact Dr. Vince Polito at vince.polito@mq.edu.au

“We are conducting a study investigating pain and body perception. The purpose of this study is to examine the way that individuals describe their actions, their bodies and the environment. Emerging research is showing that the experience of pain is associated with alterations in different aspects of self representation. We hope from this research to better understand the way that chronic pain alters participants’ sensory experiences.

This is an online study that takes approximately 15 minutes to complete.
All participants will go into a draw to win one of four $100 amazon.com gift vouchers.

The questionnaire will take about 15 minutes to complete and can be accessed through the following link:

https://mqedu.qualtrics.com/jfe/form/SV_cAPCiqWPcIhppNb

We would greatly appreciate it if you could distribute details of this research to your group.”

 

Treatment Reimbursement Fight Continues

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I’m still fighting for reimbursement of my peripheral and sacral stimulation implants.

Insurer X (let’s call them that but really what I call them is irrelevant – they’re all the same!) are investigating valid reasons to support my treatments (or rather seeking reasons NOT to). Having already rejected liability for my peripheral stim implant (2011), Insurer X, with all their grace are asking for further information in regard to my sacral stim (2015).

One of the questions forwarded to my specialist reiterated to me once again how backward this system is. The insurer is searching for ‘negative’ factors?!

Any psychological risk factors that may negatively impact on the success of the IPT procedure.

After this first lot of info was provided by Vicpain, Insurer X requested more:

Insurer X can pay the reasonable costs of elective surgery required as a result of a work-related injury or illness in accordance with Victorian workers’ compensation legislation.

Further information required Insurer X requires you to provide a brief report on your perspective of the trial outcome and reasons for proceeding to permanent implantation in 2015.

As well as this ongoing battle for quite a few thousand dollars, our new business struck telco issues and callers phoning the landline would hear we were no longer connected.

This has been ongoing for the last 4 months! We had to get a new number.

Needless to say, this was a financial disaster for Theo and I and we notified Insurer X to ask what consequences there are for an injured worker if their wage falls short for a period of time.

I have been advised that a reduction in earnings is a fluctuation.  As I advised, for S93CD claims prior to 5 April 2010, only one fluctuation is allowed in a 12 week period.  Whilst I thought that this reduction would be one fluctuation, if Soula’s earnings were maintained at this reduced level, it would be considered a series of fluctuations from her previous earnings.  Therefore, this would result in a decision to cease her entitlement under S93CD.

Soula would then need to reapply (submit a new post second entitlement application) for her reduced wage.  The problem with this is that as Soula’s injury pre-dates 5 April 2010, the S93CD application’s are mandatory referrals to the Medical Panel.

I appreciate this is a very complicated outcome from a reduction in earnings.  However, a reduction in earnings results in an increase in WorkCover benefits and the legislation and requirements around S93CD entitlements, especially for injuries sustained pre 5 April 2010, are very challenging.

At this point, I found myself wishing I could kick myself and Theo for being brave, for trying to persevere with a chronic illness, for starting our lives over, for going without seeing family, friends, for committing to a 1km radius for 95% of my days and for not staying in our beautiful home, in our home town of Collingwood, on my full entitlements.

I have just learned why injured workers have been reported to put their neck braces on before stepping outside.

If an injured worker is not supported in their attempts to return to work, then why would they risk trying to find new work? Remember, I can’t work in my previous employment scenario so in order to find new ways to work, I have to attempt many different things (as I have, as both Theo and I have).

Many of the work ideas we’ve tried haven’t worked and it wasn’t until many months that we could know this for sure. Each time we tried and each time we were not successful, Insurer X was not there. In fact the first time our attempts failed, Insurer X completely retracted all payments and I was left without any support for almost a year until the matter was processed at the system’s snail pace.

This can’t be fair.

Worse still… I’m paying a premium as a self employer through this whole process.

Australian researchers combine cultural practices with pain management | SBS News

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What great hope this pain management team provide. And I can’t help but think, well, ‘der’!

I’m not being rude, but if professionals were able to understand the cultural background of the patient, and talk with them, not to them, of course pain communication will be easier.

That’s what my Pain Train is all about. The person creates their own profile, in their words, documenting their history and their way…

Please, please, please, listen to the patient!

Australian researchers combine cultural practices with pain management | SBS News

Source: Australian researchers combine cultural practices with pain management | SBS News

Could cultural practices hold the key to help improving pain management? A team of Australian researchers have found evidence to say yes, in at least some cases.

Sydney researchers have pioneered a chronic pain treatment program, specifically designed for people from non-English speaking backgrounds.

Liverpool and Fairfield Hospitals, along with Western Sydney University, teamed up for the nine-month trial, creating a culturally responsive approach to treatment. Continue Reading

Married 20 years today

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Theo and I celebrate our 20 year anniversary today. 10 of those years we’ve had to unwillingly share with chronic pain, 5 of which, I can totally admit I was not really present.

Celebrations are so hard because you can never celebrate the way you used to.

You can’t celebrate the way you want to either.

Even if 10 years have gone by, I know for sure that Theo and I would have had suitcases ready now and we’d be planning a great trip overseas to mark our anniversary as well as our birthdays which all fall in November. Continue Reading

Trust me, I’m a patient: pain education for professionals from a lay perspective

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Lay member, British Pain Society Patient Liaison Committee

A young woman with arthritis talking about the rising tide of hostility to disability claimants says: ‘People think I’m faking. I’ve lost friends over it. Pain is invisible and hard for people to understand.’ How many of us could say that we have never thought that someone reporting pain is faking or, at the very least, making too much fuss? This is the society in which we live: intolerant of the pain of others. From childhood onwards we are told to stop whingeing and are often not believed when we report pain. Adults can be intolerant of their partner’s pain and in the workplace colleagues seldom treat kindly weakness of any sort.

These preconceptions and attitudes to other people’s pain are what professionals may have grown up with and may subconsciously bring to the clinical setting. Pain education for professionals should focus not only on the methods of treatment available but equally on the impact of pain and the need to listen to and believe the patient’s story. Pain is what the patient says it is and if he or she has come to you for help, there will be very few instances in which pain relief must be withheld whilst a diagnosis is sought. And yet, often pain management is not addressed until all the avenues of diagnostic tests, scans and specialist opinions have been explored. Students need good communication skills and empathy, and they should be encouraged to think about their own attitudes to pain and how these might affect their professional practice. They should learn that there are very few conditions for which pain relief must be withheld until a diagnosis is made. For the majority of people adequate pain relief can be achieved before a diagnosis is made.

Continue Reading

Destigmatising invisible illnesses, creativity and work

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The arts can be difficult to navigate at the best of times, but what if your particular challenges are invisible? Here’s how the sector can pay attention, remove the stigma and better support individuals.

One of the arts industry’s most valuable resources is its people. People are relied on for their passion, their productivity, and in many cases, their willingness to go “above and beyond” to ensure the sector can flourish.

For anyone working in the arts, such expectations can exacerbate stress and tiredness, but for those with an invisible illness hidden from colleagues or employees, such expectations are simply unrealistic and exclusionary. What happens to your creativity and career when you can’t “push through”?

Stigma and preconceived notions of what illness and disability are often limit what people disclose, explains the co-founder of art collective Sickness and Stealth, Jessica Ibacache. This can result in lack of support, isolation, and marginalisation in the workplace and beyond.

‘Invisible illness can affect people in many different ways; no one experience is the same. People are very quick to judge on how someone appears physically, which can really affect the way people with invisible illness are treated,’ said Ibacache.

Larissa MacFarlane, who is participating in Sickness and Stealth’s current art exhibition, Invisible said the expectations of overwork when installing exhibitions or leading up to an arts event make it difficult for those with invisible illness or a disability to participate.

‘I don’t think that this behaviour is good for even healthy people,” said MacFarlane.

More: Destigmatising invisible illnesses, creativity and work | ArtsHub Australia

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Diagnosis: A Can of Worms

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Can-of-Worms

WARNING: This post contains serious attitude as a result of 10 years of personal experience with chronic pain. The post also contains my personal no nonsense view of living with a chronic illness and (much required) rotten sense of humour, whopping reality check and bonus kick up the backside for anyone who refuses to accept they have a serious health issue.

*Proceed with caution*

Well, surely you can’t blame me for having that kind of attitude after 10 years!

Recently, it dawned on me that when I was diagnosed with chronic pain, it felt like I had been handed a can of worms.

I’ve been mulling over this thought while procrastinating about a second follow-up appointment since my sacral neurostimulator treatment. Specifically, I thought about the time that goes by while I – sometimes neglect to face the intensity of my health issue and what the consequences are as a result of that neglect.

Yep, it translated to a can of worms. Continue Reading

My Recent Follow up Appointment

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Pain-Management-goodies

I’ve had loads of information to process after my recent appointment with pain specialist, Dr Nick Christelis.

To prevent you all from zoning out (and my backside from having a fit), how about I spread my pain management report out a little?

If you’re in a kind of ‘I can’t be bothered, I’m over it’ and ‘don’t want to hear any recommendations or my brain will burst’ state then here’s a special post for you – Diagnosis: A Can of Worms. 

And if you didn’t read how I prepared for my appointment please do so here because I’m about to reflect on it: Upcoming Appointment with my Pain Specialist

I’ll also be back to report on how I am going a few months down the track – sooner if something miraculous happens.

On arrival

It’s always great to see Dr Christelis and after my appointments I always feel very much relieved. There is such a huge psych component to having a specialist who understands you and your health issue. 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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