My latest…
Back to life
...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!!!!
Awwwards Honorable Mention
Oh happy day! Yes this website has been nominated for an Awwwards 'Site of the Day' with an Honorable Mention. Please help me say, 'thank you' to the wonderful team at Origin of Image who helped me put this pelvic pain resource together and in turn gain more awareness for pudendal neuralgia. All you need to do is visit this awwardswebsite link, log in with your facebook or twitter account (or register) and rate us from 1-10. To date, pudendalnerve.com.au has had almost 10,000 visitors. It certainly isn't anything to be happy about, that's alot of people in pain, but if thats an indication the website is indeed becoming a resource, creating awareness and helping with the frustration of chronic pain, which in turn gives great relief and direction, then I'll be very happy. My chronic pain at least served a purpose.
Males with Pudendal Neuralgia in Australia
I've been contacted by a few males who feel their symptoms are similar to the ones I share on my website. There is help, for males with pudendal neuralgia in Australia:
Naomi Wolf’s enjoyment sex nerve needed repair
(Excerpt from the Daily Mail's newspaper) Feminist Naomi Wolf finds enjoyment in sex again after her nerve 'wiring' is repaired by surgeon • Author felt something different was happening after sex • 'I felt I was losing somehow, what made me a woman' • Doctor found she had been born with mild spina bifida
Italian lifestyle, perfecto for Pudendal Neuralgia
...So with my returned senses came dreams, with senses and dreams came diagnosis, with diagnosis came, finally, appropriate treatment, and with the right treatment came great pain relief and some much deserved and needed increased capacity. I feel I've arrived on a very high mountain but had to crawl all the way up over 5 1/2 years. So, here we are on the mountain, I mean, in Italy, and boy did we pick the right place! Not only did we have a divine holiday but we stumbled on what feels like a miracle treatment for my form of PN and that was part of the Italian lifestyle: bidets and siestas...
Inspiration from Henri Matisse
Henri Matisse, in his own inspiring words. Creativity takes courage. Derive happiness in oneself from a good day's work, from illuminating the fog that surrounds us. Work cures everything.
To block or not to block…
.... 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...
Expired and fallen through the cracks
After a few battles regarding my massage treatments, peripheral stimulation implant and finally receiving a letter form my WorkSafe agent stating I would no longer be receiving medical reimbursements/support, I began a hunt for a deserving explanation... But back to my main point, the answer I was seeking. I called the contact the Hon Gordon Rich-Phillips advised and it led to a conversation with my WorkSafe Agent's Injury Management Advisor (IMA) and for once, I seemed to be having an open and honest conversation with a WorkSafe Agent employee. It's hard to say it was honest because this system has taught me not to trust anyone, sadly. It felt like a great relief to be speaking to an educated, intelligent, experienced and capable person... I didn't get invalid and poor excuses or worse still, lies. Every point I made was dealt with and the conversation was about me, my case and my specific issues... ...the grand finale was that the IMA was going to answer why my medical expenses support had ceased?
Me, a case study! Pudendal Neuralgia-Masters Coursework
The condition and existing barriers to management and practice My understanding of a 'syndrome' is that it seems to remain myth-like until serious research is undertaken and repeatedly produces the same findings in many patients. The Research for Pudendal Neuralgia is minimal worldwide, almost non-existent in Australia. Although specialists and therapists are documenting their work Pudendal Neuralgia can't seem to penetrate its existence in Western Medicine's Bible, and so it is unrecognised, misunderstood or ignored. So when my physiotherapist at The Women's Hospital mentioned Alesha Sayner and I heard she was compiling a presentation for her Masters specifically about Pudendal Neuralgia, I jumped at the opportunity to hand over all my experience knowing this is exactly what the issue desperately needed. I was even more enthusiastic that Alesha was interested in documenting WorkCover's understanding (not) and treatment (not) for injured worker's with the issue. Thank you Alesha Sayner and The Women's Hospital for this huge first step, so crucial to Australian sufferers of Pudendal Neuralgia, such therapy for me too!
A Dream Came True Today
What’s also revealed here is the origin of our Jack Russell’s name, Zephyr (who is actually more like a hurricane), but… back to my life moment, back to one of the big, completed circles of my life… I was moved completely. So moved I couldn’t move, stuck to the floorboards with only one way to go, closer, if only everyone else would get out of MY way!! I almost felt I had a special right after loving the piece for most of my life, painting her, drawing her over and over. I almost couldn’t understand why no one could see these facts, and why didn’t they all also know I was the one with the tattoo of Venus on my tail? I contained myself, I was in danger of setting off the alarm and for the life of me wasn’t about to live down to Theo’s expectations...
Pelvic pain – all the fun stuff
Many of us here at BiM went to the Festival [...]
Now let’s get this straight…
So, you think you can see pain hey? Or rather your understanding is, if you don't see it then it's not there? Please read on because people like you drive me a little batty... "Pain is invisible!!!"... ...I know, I know, it's shocking and many won't believe it, ever, but it's true... Seen me smiling? It hurts. Seen me having coffee with a friend? It hurts. Seen me walking up the street? It hurts. Seen me having a glass of wine? It hurts. Seen my online social activity? It hurts doing that. Heard I went away for the weekend? It hurts... more. Did I email you? It hurt...