Dr Susie Gronski has been a My Health Story’s (MHS) Advisor and Friend for several years. I have been closely connected with Dr Susie Gronski since [...]
Roll up – get your $10 ticket! After years of building My Health Story (MHS), my online system and app have been selected for Melbourne Design Week, [...]
The fabulous Evelyn Hecht (and our comrade of the pelvic pain world), who created Pelvic Sense, has an invitation for you. If you are experiencing persistent pelvic [...]
Although pain management is the undercurrent of my life, it no longer rules my life activity. This is a tricky mind battle that underlies everything I do. [...]
I’m so disappointed in Adele Ferguson and Chris Gillett. I can’t believe this is an ABC story. Firstly, I do want to express my sadness for the [...]
When will patients be understood and listened to?! It’s obviously necessary to have a peak body addressing the needs of the pain community. Still, the frustration of [...]
In 2011 when I built pudendalnerve.com.au, the internet was starved of helpful communities and resources. It was the very reason my advocacy began. I didn't want anyone to be as lost as I was on my search for important health information. There were few online portals where people could connect, and the only health information available was through science journals – no individual could understand them! Health orgs that did have a web presence seemed not to have a dialogue with the consumers they claimed to exist for. Thank goodness that's changing, but we still have a way to go as the usual questions remain; What is chronic pain? How can we manage chronic pain and its symptoms and effects? What are the best treatments, and why is there such a lack of understanding? etc This is where Nerita Lewis comes in with her idea to democratise healthcare with Jaspen.
Can visualising the personal health experience lead to better care and understanding? You all know what I think and believe about this. But now, I'm aiming to inform the rest of [...]
The Primary Care workshop at this year's CODA Conference was my favorite lived experience contribution to date! The workshop approach was more effective than my other 'standup gigs'. Something has clicked with me lately – I've stepped out of chronic illness's emotional and physical sides and more often partaking in health education. I like it! We must believe that twitches, spasms, toilet function-changing effects, noise, screaming, soreness, stabbing, burning, itching, fatiguing, and draining effects of chronic pain can be controlled. If you had told me this between my first and 4.5-year mark, I would have felt angry and said, 'My issue is severe, far more serious than everyone realises, and my healthcare practitioners are all missing the terrible thing in my body, and I am going to die from it.'
I have posted much info about Ian Cleary and the Lightning Process. Like my DNA investigation, this costs quite a bit but would be very worth it. [...]
