I can't really think of a better way to mark my 14 year anniversary with chronic pain than to present this wonderful (loooong) chat with my diagnosing physiotherapist, Anne-Florence Plante. I will clarify firstly that Anne-Florence's official title is not Soula's physiotherapist but rather her qualification is Senior Clinician Physiotherapist. Not only did Anne-Florence Plante diagnose me but this awe-inspiring human is the reason pudendalnerve.com.au exists. We have stayed in touch on and off over the years which has been wonderful and now, given my move to video advocacy it was only fitting that my first two chats were with Theo and Anne-Florence. Since 2011 when I first published this website, many of you have written to me to ask about the physiotherapy Anne-Florence Plante provided that not only led me out of a 4.5-year search for an explanation to the pain I was experiencing but that ended up guiding my future treatment and pain management. I'm so happy to be able to share this informative conversation. What we talk about in this chat (with lots of other detail in between): 1:05 Diagnosis 1:36 Pudendal Neuralgia 4:50 Appointment approach today 16:00 Anne-Florence's Formal training 20:05 Isolating pelvic pain 23:40 Educating people & practitioners 27:30 Navigating the journey 30:34 An explanation 36:20 Do I still have Pudendal Neuralgia 37:12 Management 43:00 Et Voila! 44:26 PainTrain – My Health Summary
In November this year, I was invited to present my pain experience to a group of 40 GP's. The topic was: An Approach to Chronic Non-Cancer Pain and the workshop was facilitated by Dr Paul Grinzi for Murray City Country Coast GP Training. Where does one start when asked to present to 40 pain interested GP's in 20 minutes? There's a great emoji to illustrate the look on my face when I ponder this question. You can well imagine. As an 'expert' in my 'field' 20 minutes to describe 13 years of living with chronic pain of which 4.5 years were spent lost in a forest is still a tough gig. However, this was a presentation to medical professionals. And they know everything, right? .... I've decided to make this video a paid resource. All proceeds go towards funding this website and PainTrain – My Health Summary. What do I talk about in my video? — O:43 My story — 2:50 Investigating pain, research & treatment — 4:26 Diagnosis — 5:55 Advocacy — 7:45 The experience of pain — 8:27 Medication — 9:35 Characteristics of Pain — 10:55 Planning life with chronic pain — 12:09 Pain management — 13:50 PainTrain
Watch and listen to my PainTrain Post CV-19 update. I missed my health summary. I didn't feel right not having my own history. Sure I have health files all over the placed (physically, digitally, with many professionals, x-rays galore) but PainTrain is a bit of a rock for me. It's my safekeeping. After not having PainTrain for months, what I most kept thinking about was 'what if I have to go to an appointment and meet a new healthcare professional?'.
Being resourceful is what makes the difference — it is so hard working life out. But Theo and do it. We burrow down and we make it happen. There's no choice... or rather there was but I didn't want a fulltime WorkSafe paycheck. Of course, I think about that. And of course, I often call myself stupid for declining it – I was safe! I had that full-time paycheck for the rest of my life. But creativity and sharing the day with Theo is so precious to both of us. Even with the complexities and risks, it appears to be the only way Theo and I can live. For this, I am grateful! So I'll stop complaining now and go on with what I've been doing and what I am achieving. It's all good! I'm moving. Life is in forward motion after being so still for so long – a decade at least!
I'm not exactly enthused about health admin. There's already enough admin and digital filing to do in life. But I've found that my PT health summary is saving me, not only admin time, but alot of stress having to remember details of my experience. I've included a self portrait for my specialist today!
PainTrain has followed Pain Revolution very closely over the years and its this research with Soula's experience that has driven the PainTrain concept. We love having your support all the way Soula! Your [...]
Um, actually, they aren't in competition. They are two very different online resources. There's no turning a blind eye or choosing to stay away from this technology change as it is affecting you right now and there is a decision you need to make within three months about your autogenerated account on My Health Record. Are you staying in or opting out? I opted out. And not because I think My Health Record is a poor concept – it's a great idea! Remember I've made a type of online health summarising resource myself because I realise how important it is to organise your health information and communicate more efficiently with your health team/s.
Theo and I continue to establish our new life in Queenscliff and are enjoying the many wonderful new aspects of our new lifestyle. We're also learning to manage the sacrifices. It makes me feel I've turned a corner. Home Then Actually, a couple of weeks ago, I literally did turn a corner. After staying in Melbourne for a special family lunch, during the evening we also managed to catch up with old friends on our old pavement. I kind of felt a little emotional pang when I turned into the city end of Gertrude Street and saw the magnolias enjoying the Autumn evening light and the little drizzle that was beginning. Very steadily pacing my drinks, the night saw us hop around our old favorite spots. The life turn happened when I stepped out of the Everleigh and instead of turning right to head 'home', Theo and I turned left to head to a city hotel. We were going to sleep at this hotel, wake up in the morning and return to Queenscliff. Theo had to work... Sunday. I don't often have overwhelming emotional moments. I really deal with life's activities quite well. I mean, who would I think I was expecting a perfect life run, right? 'Suck it up!' But this was one of those overwhelming emotional moments and it was damn hard. I knew what it was. I knew that overdue moment since we left 'home' had finally caught up with me. I fully comprehended that we had said goodbye, and life had moved us on. I lapped up every step away from my previous home as the rain fell on/off and the concrete took in all the glittery, yellow, autumn Melbourne evening lights. I bid abiento to each magnolia as I walked up the street. I also lapped up the arms that were around me and the huge hug that Theo and I stopped to have to mark our moment. Home Now