Over some years and after a third time being banned in some way or form from an official pain organisation's social media, I now feel encouraged to make a point - advocacy is not a business. I began this website to advocate for people living with chronic pain and share helpful resources to avoid the impact of misdiagnosis on their lives. I aimed and achieved gratitude on a global scale, which has fed me. I also started this website to connect people living with chronic pain to professionals who understood them very well and could possibly treat them. I've asked none of these amazing professionals to pay me to be included on this website – we're all working for the same cause, right? This was never intended to be a business. What I'm seeking is more respect and understanding for the voluntary position of the advocate. So let's pull the bandaid off and frankly define it: Advocacy is costly and time-consuming. It earns us no income; it causes pain and uses a significant portion of the little and precious uptime we get and, advocates are also much greater than their cause. I repeat; advocacy is no business.
I was so close to throwing the PainTrain My Health Summary idea out the window when COVID-19 hit. There was no way I could be positive about pushing on with my little train startup while a pandemic was approaching. But as it turned out COVID-19 catapulted telehealth behaviour and with that came increased interest in health tech and a newborn... the digital patient! My creative communication experience always encouraged me down this complex path – I found healthcare primitive! The way people manage their health and the way appointments are managed has not changed for eons. If you live with an ongoing medical condition, we know now that it takes teamwork to manage it and you have to be responsible for your own health information (or it all gets documented incorrectly!). Clearly, I believe that we need to step up and manage our health and all things relating to it. We especially need to do this because we all have such lengthy stories to tell! So on that note, here's my big news from my humble little train which is now planning to go way beyond its destination... if you help me, there's a lifetime subscription in it for you!
Evelyn totally has PelvicSense! And thankfully, Evelyn made an online pelvic healing home program out of it. It includes an easy-to-understand book, calming audios with music, downloads, and many gently progressive pelvic exercise videos. I was thrilled to chat and meet Evelyn Hecht PT recently. It is refreshing to speak to a healthcare professional who has the care factor and exudes warmth and understanding.
'Pain is a unique experience' we've all heard it, and by now, most of us believe it. But, after viewing my personal genetic report, I'm now sure that pain is a unique experience. Perhaps it's not even pain for some of us. It's not for me! This genetics investigation exposed the elephant standing by my side the last 15 years – actually, it's been with me all my life but it took an accident to begin its stampede! Official diagnosis – not pain; it's inflammation. And it always has been!
PainTrain My Health Summary is growing up and I would love your insight to guide me through this very important growth spurt. As you might know, I founded PainTrain MHS to help [...]
I'm so hopeful for 2022 because I can now so confidently say, 'I can't make it IRL, can we zoom?' without apology or explanation. And, this year it also got a whole lot easier to slap down my cushion in the middle of a full restaurant... and sit on it. It's also become easier for others to understand why I couldn't be somewhere and it became hilarious listening to people rave about online shopping (hello, we've been doing it for years, even before it was all setup online officially). I bet you can rattle off many examples of feelings of inclusiveness – even the word inclusiveness managed to pop up on this website for the first time, where until now, all we could talk about were our exclusions and how foreign we felt within the world.
It was wonderful sharing my story and vision at the Murray City Coast Country GP Training. AND especially presenting on a stage and in actual physical life to 50 general practitioners (GPs) who [...]
There are no formal qualifications for someone living with chronic pain but patients are considered 'patient experts' and our lived experience is very much valued. I've been invited to several seminars and training sessions relating to chronic pain over the course of my 14-year experience. It's of great significance for me to be able to use the lived experience – no other value for it really!