Chronic pain management is tough! And it's also different for each person who lives with and manages it. I wouldn't be much of an advocate if I didn't welcome you inside my sanctuary space and show you a teeny glimpse of how I approach daily life – especially when I've promised to bring you video content and interviews about pain management and chronic pain research with other fabulous people. So here I am, live to you from my sanctuary space, from a room that is my everything space otherwise known as, an artist's studio. I present a little of my management wisdom and creativity, the how and why I came to be in the space and what is going on with all those dolls in the background! This video is Membership material so therefore only visible to you if you have a current membership for pudendalnerve.com.au Help! How do I become a member?
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
And ladies can also benefit as well! I’m signed up to Dr Susie’s news – highly recommend you do so also as she is a wealth of information. Although Dr Susie specialises [...]
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?'.
Any effort to help injured workers and rectify the workers' compensation system is going to meet me with a very stern look of doubt on my face. It's also going to take a great deal of change for me to believe that any Governing body is keen to take action and that they will be able to follow through. It's going to take a great deal of change and support and sadly it won't make up for the trauma and loss suffered in the past. Is it possible that a Government group can swing all the bad it's done (and doing) and transform into a truly supportive system? Can Victorian workers and employers feel confident that if in the case of a work accident, a system that supports injured workers and employers will exist? And where possible will this system be able to find a way to return workers to some form of work? To me, it seems that to land another man on the moon is going to be far more possible.
In what's becoming a life trek in the aim of defining my ongoing pain issue, there's a pattern I'm beginning to see. Most often when I read educational material and it feels like it's beginning to gell with my experience, I feel a suction begins to the words. I'm drawn into the paragraphs of the researcher/s and excitement kicks in. 'I'm going to find the definition, this person is speaking my language!' It gets wilder and wilder – think Willy Wonka's crazy boat ride (below, but hold on to your pelvis!) and the findings and resources amount to great support material. I begin to believe – 'this is IT!' But Like Willy Wonka's crazy boat ride, somewhere along the way it gets freaky, the definition starts to go off my track and as I keep reading I'm feeling that I'm coming unstuck.
I've gotten up on my feet only to find myself back down again a few thousand times in the past 13 years. I use my personal chronic health issue to try and understand the management of COVID-19. As mentioned in a few COVID-19 related blogs, there are similarities with chronic illness in the way the virus attacks a human. Qualities like its invisibility, the way it can affect life, the way it has affected livelihoods and the ongoing power over humans are all mountains I've had to get over. And over... and over. And will have to continue to get over.
Support for artists is rare. Understanding and value for the arts, in general, is rare and if you are an artist with a disability... well, you fall off the media platform altogether. So, what's especially great about Nas Campanella's story about this artists' residency is that it relays the important message of creativity as a form of catharsis and management for invisible chronic health issues. And the artists get to explain.
When I started this website, my hope was to connect people living with pain with healthcare practitioners. At the time (2011), there was no online information or help for Pudendal Neuralgia and other such pelvic pain. I thought if I could provide the information in one place, it would help everyone connect and solve dreaded pain issues or at least speed up the diagnosis and treatment process. I didn't hope it would take nine years. Nine years...!!! But we have arrived and the point is that anyone can access this information session.