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Back on the treatment trail

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So someone got talking to someone on a plane (you know how that story goes, your eyes begin to glaze over because you’re in pain thinking ‘if this friend tells me I need to meet someone and sustain a new friendship, I’m going to punch him’ – but in the end, it works out that you wished you had sat next to that someone on the plane, and you meet that person and you wished you had met them a very long time ago (like eight years ago for me).

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Injured workers rising above

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Bags Of Love

(By Rosemary McKenzie-Ferguson)

Bags of Love Op Shop will open on the 31st July 2015

It has taken a lot longer than any of us at the Centre would have liked- however after many tears and a lot of frustration and loads of laughter and an rather risqué fashion parade the Bags of Love Op Shop will open on the 31st July 2015 .

It is yet another first in the wonderful world of workers compensation as the Bags of Love Op Shop is run completely by injured workers for the benefit of injured workers as each of them rebuild their lives in ways that has never been seen or done before.

“Bags of Love” aim to provide basic food supplies as often as is possible to ease the burden on the injured worker and the injured worker families.

There won’t be any speeches, and there won’t be any ribbons cut and the Australian stock market won’t have a sudden movement to indicate the importance of the opening of the OP Shop.

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Theo, and his ‘carer’s’ perspective

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Team Soula and Theo

The post many of you have been waiting for… Theo’s thoughts, sacrifices and life experience of his daily ‘caring’. I should add that Theo and I have been together almost 20 years, seven of those consumed with Pudendal Neuralgia (PN).

What does PN mean to you?

To me PN is a yet to be accepted condition that sufferers are unable to express and be understood for. I do not claim that I understand it/the symptoms but I believe that it is real. I see my wife live with it every day (and night).

How has PN changed your life?

More so it has changed our (Soula’s and mine) lives. Personally however, I feel I have the lucky end of the stick for I am still able-bodied and there to help my wife. Our ‘arguments’ always revolved around who could do more for the other. I guess I have come up on top in that respect, however, having to see Soula in pain takes a lot out of me. Learning to adjust with things like, walking slower, no sudden tickling, no jumping playfully into bed or sitting through a long dinner has taken time. You adjust. It’s the look in Soula’s eyes though that can see me having to adjust that saddens me most. I can’t help but feel that she feels responsible for me having to change my life. I always say to her, “What would you have done…?”

You don’t like yourself being referred to as Soula’s ‘carer’, please explain why.

I care for Soula however, I never consider myself her carer. A carer to me is someone somewhat detached. Soula is my wife, my life! If she were to catch a cold and needed a few days off her feet whilst I made her soup and tea, I would take that as caring for her but not as being her carer. I think this may be a language issue but I wanted to clarify.

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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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Health Organization for Pudendal Education (HOPE)

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HOPE is probably our best online resource for PN, the forum in particular is full of great advice and information from practitioners and patients, around the world including of course, Australia/NZ.

HOPEBracelets

HOPE is a charitable organization that offers support and information to patients who have pudendal neuropathy (PN), pudendal neuralgia (PN), or pudendal nerve entrapment (PNE).  If you have come to this website it is probably because you are in pain or you know someone who is in pain.  Our goal is that after coming here you will be able to develop a plan of action that will help you get your life back.

Visit the website: www.pudendalhope.org or sign up to the forum

BUY The Big Issue

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Strength in Numbers

“I’ve got to get to work, it might have been work… I have to get to Swanson Street… I sell The Big Issue”. Yes, you read right… and to top it off I was kindly informed, in just a few stops, that I could buy a calendar too! I couldn’t help myself, I asked, “Are you trying to sell me something on the tram?” We all laughed.

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Chronic Pain Info group on Facebook

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Chronic Pain Info facebook page

Chronic Pain Info is a Facebook group/page. A place to come and learn, share, vent and meet other likeminded individuals who share similar health conditions and concerns.
Rachata Brown wrote:
How to understand us… people who are dealing with the pain.
1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.

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To block or not to block…

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….
As documented many times with this condition, treatment isn’t just about relief, it also provides more detail about the issue and this becomes a guide for the next step. It’s like taking mini steps of progress and it really feels fabulous, I feel as though I gain some control, I foresee future options and ultimately, I regain some hope. Without this I’m travelling blindly….
I began to really struggle 12 weeks after the first block and even during that time I had a few flare ups. I wondered if my implant perhaps had interfered with my nerve block as it’s known to cause pain if you keep it on whilst the pain is at a low-level (yes, try to figure that one out!!) By the time I realised my nerve block was well and truly wearing off I was at the 14 week mark, and having been very excited with what relief I had, Theo and I booked a holiday to Italy. Thankfully the brilliant Dr Courtney was able to fit me in for another nerve block at the 19 week mark which was exactly two weeks before travel time. Why am I mentioning the holiday? Because I believe a nerve block needs support, it needed me to get out of the pain routine and team it up with as much distraction as possible…
I felt my brain would freshen up, have a new shot at life and not have to face my day bed, aids, daily pain routine etc etc. I set off to live a dream in hope distraction would bring a positive change and another step forward…

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The Princess in the Tower

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The Princess in the Tower website

Excerpt from The Princess in The Tower website

This website is dedicated to increasing awareness of Complex Regional Pain Syndrome, or CRPS, formerly known as Reflex Sympathetic Dystrophy or RSD, particularly long-term CRPS/RSD, which is so rarely spoken of. Most websites focus on RSD of 3 to 9-12 months that is still treatable with hope of remission. Long-term RSD is where the patient has had the condition for over that time frame, sometimes as long as decades have passed. While this is one focus, we hope to help anyone with chronic pain.

We also provide healing support for fibromyalgia patients at the Princess in the Tower. Our aim is to keep sharing healing and chronic pain management tips, while maintaining a happier outlook. Check back often to learn about new contributions to our site. If you have any questions or comments, make sure to get in touch through the Contact Us section of the site. We’re here to help, bring comfort and healing, even if it’s healing of the spirit, we hope you enjoy your stay.

The website is being updated every week so check back often; there will also be a chronic pain blog on the site’s completion and interviews with experts in everything from chronic pain management to cognitive behavioural therapy (CBT)…

Read more on the website

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…)

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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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