Excerpt from soula.com.au/blog September 22nd, 2013 I’m having a great and most satisfying time with this self-portrait. From scouring for different pieces of paper, to painting my own, [...]
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.
...I'll clarify now, this post is a very positive one. It's about standing up, facing the world which requires courage, strength, being understood, supported, alot of struggle, and a damn load of management skills. ... not only did Lucy Feagins share our creativity on her brilliant blog, but her address and understanding of our space and lives couldn't have been more spot on or more supportive of PN. It puzzled me that Lucy could understand it when others struggle so much. ... I want judgement to stop. People in pain shouldn't have to say more than 'I suffer chronic pain'. It's harmful and prevents people in pain from going out when they're feeling ok, or rather when they can withstand their pain. If their houses are really tidy, that means they have help. If you see them socialising in one place, doesn't mean they can make it to the next. We are able to smile, we can move, we can walk, we can stand, just not alot. We don't hunch, in fact our practitioners teach us to have great posture, we might sit funny, walk slow, not carry much, and stare as you may you won't see our pain. If we appear somewhere and look great, we planned for that and it took alot of sacrifice and help. If you have doubts, keep them to yourself please because there's no doubt in our mind we're in pain.
I've lived here in Delaware since December 2011 and have not had a block since. I already had 6 Pudendal Nerve blocks and this after so many other procedures: 5 Ganglion Blocks, 6 Caudal Blocks, 2 Botox injections, 2 Radio Frequency Ablations, 2 Neurostimulator Trials, an Interstim Impant, and then the 6 Pudendal Nerve blocks. Endless research and finally putting the right two words together on Google, opened up the world of Pudendal Neuralgia (Neuropathy) to us. That was near the end of December 2010. On the day after New Years and in response to two letters I sent to two Dr's names I had found, I got calls from both Dr’s the same day.
You can all imagine why The Scheme Project caught my attention and you can all understand why my pledge was not only made in seconds it was supported (and increased) by my husband Theo who equally saw the benefits in Kris's project. As frustrating as it is being left without any income and medical support after my workplace accident and having my fair share of rants to expose, I actually appreciated Kris's professional approach to his project and his intent to make the documentary up front but not personal. He's not looking for tantrums, witch hunts, singling out of fraudsters and unethical behaviour but rather aiming at exposing the realities in hope of making a change. At the end of our conversation we both agreed that life's great knowledge of 'health first' doesn't seem to be part of WorkCover's culture. The support just isn't there, not in treatment, not in standards, not financially and certainly not in return to work. What does Kris need? Your signatures and your pledge (pledges are not collected unless Kris reaches his target). 'You' may be an injured worker, family member of an injured worker or employer, a treating practitioner, medical examiner, conciliator, lawyer, investigator, WorkSafe agent staff member, Minister, anyone associated with the WorkCover system in fact any worker or employer, we all deserve better quality protection.
We 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). However this media attention and the snap of me in Sunday's weekend paper had me staring at my portrait (thank you Marija Ivkovic) with curiousity at that captured second of my able life. I looked incredibly independent, active, like I was working full-time and like the issue I confessed to was clearly easy to live with. We are all judged on our facade... and although it was stated in the article that I have PN, I often wonder: can it (or any other invisible issue) ever be understood by my friends, family or community at a glance? The answer is obviously 'no'. I myself battle to understand this conflicting issue with its high sensitivity, on/off maddening, screaming and confusing signals and failing functions, and that's no surprise because even I can't see it! Theo puts it well, "I can't understand Pudendal Neuralgia but I believe Soula".
I had tried to paint myself in pain but it was deeply upsetting. It would have also been concrete documentation - forever - and that's the last thing I wanted to do with this pain. Immortalise it. The pain wasn't staying. It wasn't forever, and there was no way I was going to make it mine. My artwork takes me to happy places, but of course I couldn't ignore these years of my life.
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: Removal of pelvic thickened ligament Peripheral stimulation [...]
Well it's hardly a birthday celebration! But certainly a time to reflect and assess myself and the achievements of PudendalNerve.com.au. The total visits in 12 months total an astounding 21,500 and the search terms are a clear indication that still, so little is understood of Pudendal Neuralgia worldwide. The first note must be of thanks and of course, has to go to my husband Theo. Without Theo's daily help this site simply wouldn't be up and running.... neither would I! Second note worthy thank you, and certainly something that can be celebrated, has to be the beautiful connections I've made in the past year. I've met the most inspiring, energising, kind, compassionate people, whether practitioners, therapists, chronic pain sufferers, or people attached to the pain system, you have been my encouragement and empathy. Your pain and/or knowledge inspire me to continue and get to the bottom of this dreaded pain issue (in the hope of resolving it not only for me but for all of us!), and/or try to voice my improvements for an ignorant WorkCover system. As far as my personal 1st year status goes, I definitely have 'progress' to celebrate; I'm running on Nerve block no. 3, refreshing my pelvis as required with a newly installed bidet, taking minimal amounts of Endep, in much less pain but still much limited with capacity and in need of daily help. Although I still need regular massage, I'm able to work a little from an accommodating home setup, thinking a lot more, delegating-delegating-delegating and finally, but not least, have taken a plunge into the wonderful world of Chinese Medicine which I believe may finally be able to reach my pain. Stay tuned for another update on that soon. (image) Nerve Block Cake & Candle To sum up, here are some stats that may be of interest to my subscribers and visitors (and my very loyal spies!).
Happy... post nerve block No. 3. I'm at 5.3 weeks and have managed to walk daily a few days in a row, practice some extremely mild yoga and have a few meals out without the pathetic fire warning in my pelvis. Could it be? Could it really be? Here's hoping 2013 begins with some pain free magic. Right now, I feel like this... and I wish that everyone who comes across my website, or is a regular reader feels the same. If not, please, remain hopeful.
