February 25th, 2023 11:06 am

Introducing Nerita Lewis, Founder of Jaspen, a new social platform

By |2023-02-25T11:11:25+11:00February 25th, 2023|Categories: Blog, Learn, Professional Resources|Tags: , , , |

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.

July 28th, 2022 2:47 pm

Talking Healthtech: Dr Valerio Vittone on Long COVID

By |2022-11-27T15:30:37+11:00July 28th, 2022|Categories: Blog, Learn, Professional Resources, The pain|Tags: , , , , |

Since investigating my DNA with Dr Valerio Vittone, I believe more that my health issue is not about chronic pain but rather about inflammation. I've reaped magnificent rewards since implementing recommended dietary [...]

June 9th, 2022 4:08 pm

My Health Story Now Live in Your App Store

By |2022-11-26T20:58:47+11:00June 9th, 2022|Categories: Help, My Health Story, Professional|Tags: , , , , |

I, Soula, the way I live and the type of person I am, and my story were fundamental to appointments and essential to my treatment. In addition, I realised my health experience was unique and needed to be understood. Professionals are understanding this a lot more now. On educational health networks, I see this 'tip' all the time now: People with invisible illnesses are more than their diseases And on professional forums, I read how lost practitioners are as to how to help people living with ongoing illnesses (which also explains why so many of us are enduring long-term illnesses!). So are you ready to navigate? Are you ready to put your unique experience forward and be better understood? Then, your story is the most essential part of this change. And if you need some guidance, I'm happy to zoom in if you need online training sessions, or you can email me a 'how do I...' question, and I'll film the answer for you.

May 8th, 2022 1:52 pm

Keeping up my Stamina

By |2022-11-27T15:30:37+11:00May 8th, 2022|Categories: About, Blog, Living|Tags: , , , , |

I was going to title this blog Fatigue, but after reviewing it repeatedly, I decided to title it Stamina instead. It took me years to get to 'managing'. Now I have transitioned to pacing. As stated in my previous post, I'm living now. I'm not in a passive state watching and being attacked by an unpleasant experience. It wasn't easy getting to the state of 'management'. There are so many 'have to' activities – we can't avoid these. When I explain my 'have to' activities such as showering, making a coffee, sitting/standing all day, dressing, etc., people look at me bewildered, but you'll get me. Until this fight is experienced, one can't understand that day-to-day activities can strip your energy and count as 'activity'. It feels insane when faced with this realisation. But I have found a way...

April 12th, 2022 8:50 pm

My Health Story now LIVE

By |2022-11-26T20:58:47+11:00April 12th, 2022|Categories: Blog, Learn, Professional Resources|Tags: , , , , |

My Health Story is now live and has totally replaced PainTrain My Health Summary. My Health Story goes beyond helping people communicate their stories of living with chronic pain. It now presents a way for more individuals enduring chronic and complex health issues to communicate their health stories and manage their healthcare better. For healthcare practitioners, it presents an opportunity to diversify your care offering and influence positive behaviour in the overall patient journey. My Health Story takes a holistic view of each unique lived experience and understands that patients are more than their disease.

March 4th, 2022 1:26 pm

CODA 2022: My Lived Experience and I Will Be There

By |2022-03-04T13:40:36+11:00March 4th, 2022|Categories: Blog, Learn, Professional Resources|Tags: , , , |

I'm thrilled to be invited to another educational event IN REAL LIFE I might add.  I really enjoy collaborating with Dr Paul Grinzi as a lot of his educational workshops have a great focus on communication. If people and their health teams can't connect then care isn't going to happen. So how do you reach, connect and help people who live with chronic pain? Come along and learn! PRIMARY AND ACUTE CARE Chronic persistent pain is a common clinical issue, and yet most of us have received very little training in how to best manage patients experiencing this. Not only do we have to manage the clinical and psychosocial issues presented by the patient, we have to recognise and manage our own biases as clinicians. The format for the workshop utilises patient experiences, clinical cases and new frameworks to help further our understanding of persistent pain and how to assist our patients. There is a specific focus on management within the community, but also opportunities to explore the challenges within the emergency and inpatient hospital interfaces. By the end of this half-day, you’ll have optimised your approach, and may find this topic a little less painful.

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