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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.

February 14th, 2022 3:05 pm

Rebrand Announcement: My Health Story

By |2022-11-26T20:58:47+11:00February 14th, 2022|Categories: Blog, Help, Manage, My Health Story|Tags: , , , , , |

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!

February 6th, 2022 3:31 pm

Evelyn Hecht’s Pelvic Sense

By |2023-01-02T11:05:05+11:00February 6th, 2022|Categories: Blog, Learn, Professional Resources|Tags: , , , |

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.

February 2nd, 2022 10:13 am

And The Elephant in the Room is… Inflammation!

By |2023-02-17T10:32:00+11:00February 2nd, 2022|Categories: Blog, Help, Professional|Tags: , , , , |

'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! 

December 16th, 2021 1:17 pm

Off you go 2021…

By |2021-12-16T13:17:55+11:00December 16th, 2021|Categories: Blog|Tags: , |

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.

July 21st, 2021 8:54 pm

I Found My Pain Definition in Lockdown

By |2021-07-22T13:45:53+10:00July 21st, 2021|Categories: The pain|Tags: , |

Lockdown time appears to be crucial for pacing back to whole life. Every lockdown has given me a leap of some kind. I genuinely think lockdown together with my spinal cord stimulation has armed me like never before in this 14-year journey. There are moments I'm so comfortable. Of course, it's seconds and minutes, but it's soooooo freeeeeeeing. I 'just' walk over to get something – nothing is restricting me. No fog, no warning signal; it's just me moving in the space. So I can totally focus on what's in front of me, I can hear the quiet, notice the dust and envisage all the things I plan to do.. to the end! It's an uninterrupted dreamy sequence! If memory serves me correctly, this is a typical experience and a sequence that should be totally taken for granted instead of awed. I haven't experienced this before lockdown. EVER. CHECKPOINT: 14 years, 4 months and 21 days (or 5257 or 172 months, 21 days), I have experienced a short uninterrupted sequence of normality.

June 1st, 2021 9:23 am

A (fantabulous) Chat with (the fantabulous) Joletta Belton

By |2023-11-07T11:05:18+11:00June 1st, 2021|Categories: Advocacy, Learn, Online, Personal resources|Tags: , , , |

How I love mycuppajo – the wonderfully beaming human officially known as Joletta Belton. I was introduced to Joletta's blog by a mutual friend, Dr John Quintner (pain educator for Arthritis & Osteoporosis WA and retired pain physician). Jo's experience (science and creativity) makes her documentation about the complex lived experience real, interesting and easy to understand. It's so easy to relate to Jo. Jo and I also share the added frustrating experience of being an 'injured worker' and having to 'defend' our injuries to unjust workers' compensation systems. Her advocacy and achievements are extraordinary – she is a force driving change throughout the world of chronic pain. I'm so happy to be able to chat with Jo and deliver this video to you all. I know it will be inspiring, energising and informing. I also know that much of the way through you will have beaming smiles on your faces. It's just impossible to speak with Jo and not smile! In this video, Joletta and chat about: 1:04 Checkpoint – the meaning of (Jo's) life 3:53 Being the new 'you' 5:13 Purpose: the lived experience 7:55 The power of words 11:00 When there are no words 13:25 Patients & Practitioners 17:05 Science speak 21:13 Pain in realistic terms 26:15 Angry with yourself 28:50 Forced to defend 33:43 Livelihood loss 35:41 mycuppajo.com and beyond 43:33 COVID impact 48:02 Changing system-centered care 51:55 Gratitude

My Health Story now in your app store

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Thank you so much xx

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Soula Mantalvanos created pudendalnerve.com.au to advocate for people living with Pudendal Neuralgia and other invisible and chronic illnesses. Soula combines her years of living with chronic pain and her professional creative communication experience to advocate for a better quality of care. The website includes topics about chronic pain, pelvic pain, pudendal neuralgia, injured workers, workers compensation, inflammation, chronic illness, patient empowerment, self efficacy, better healthcare, nerve pain, various treatments such as nerve blocks, neurostimulation implants and the courage that is required for self management. All information on this website is a account of Soula's lived experience and should not be taken in anyway as advice or recommended treatment for any other person or healthcare professional. Chronic illness is a unique experience and therefore requires better understanding and tailored care. © Copyright 2023 -    |   pudendalnerve.com.au created by ooi   |
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