(Sing with me, to the tune of 'The 12 Days of Christmas'': 16 points of stimulation, multiple case managers, too many Independent* Medical Examinations, 9 anaesthetics, Several investigations, wasted complaints to WorkSafe, Four conciliation applications, Three operations, Two Medical Panel Opinions, One Impairment Assessment, and, no Partridge in a Pear Tree to be found...
I thought it might be a little more realistic to post 'status' reports as I battle on with PN. Most often I try to be positive and hopeful but the reality is PN is nothing but hardship, sacrifice and loads of pain. Instead of bombard my website with these status reports I chose to write these on my Facebook page. It also makes it easier for me to provide support in the form of 'live' communication. I can keep posts short and they can be posted from the phone more regularly. The website tends to have 'major' status updates, I felt I needed to comment about the day-to-day struggles.
Now here's something I didn't see coming, my pain journey being transformed into an educational documentary about Pudendal Neuralgia (PN). And I have to warn you, there won't be much smiling and hiding of pain if this happens. One of [...]
Continuing on with my awareness for Pudendal Neuralgia and all things pelvic pain, I didn’t pass up the request from A Current Affair to speak about nerve pain and my experience with it and its treatment, predominately focusing on the [...]
Here is my attempt to gather all references I've come across or refer to on my website for Chronic Pelvic Pain. Clearly nowhere near all the references that exist but at least one 'library' location with a bundle of great material (and one organised website!). If you've come across a resource that you think should be included, please contact me and if you are an author and have an update or other information to provide, I'd love to hear from you. I know how frustrating it is to have to sift through pages and pages of the internet, thought this might be of help to pain sufferers who simply don't have the up time. And a huge thanks to everyone who replied and supplied me updated material. Obviously I plan for this page to grow and somehow I will keep it in some kind of legible order. Currently in alpha order by author and title of their publications, perhaps as it grows, we can list by subject.
I was preparing for my second solo exhibition, Winter Light, consisting of oil paintings and prints of Parisian facades when my fitball went pop and I entered the PN world. The exhibition was moved to the end of the year [...]
Excerpt from soula.com.au/blog September 22nd, 2013I’m having a great and most satisfying time with this self-portrait. From scouring for different pieces of paper, to painting my own, to writing on the portrait, every experimental and contributing part has hit my [...]
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 was walking to my studio from where I had a clear view to the sky through our balcony doors when the largest strike and thunder occured that honestly seemed like it had come through the doors and landed on our kitchen bench a few centimetres away from me. I flinched, sort of ducked in some auto response and next thing I knew I was on my knees and had fallen to the ground. My legs were so weak Theo had to lift me off the floor and we made it to the couch where I chilled, a little terrified for a while. At that point I couldn't piece together what had happened, even now I'm not sure it was all so quick, but the fact remains, I landed somehow on my knees with the back of my legs feeling like jelly unable to stand me up.
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".