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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

March 23rd, 2021 1:13 pm

On Neurostimulation

By |2023-02-17T10:32:00+11:00March 23rd, 2021|Categories: About, My treatment|Tags: , , , , , |

Neurostimulation has been key in my management of pain. It's also satisfied my wish to find a way to be as self-sufficient with my management as I possibly can be. My first stim was a peripheral stimulation unit (leads under the skin) and that was implanted in 2011. I still have this unit as a backup. In 2015 I had a sacral stim implanted but that fizzed (in my opinion) within three years. So in 2019 I had the sacral stim removed and replaced with a spinal cord neurostim. WARNING: In the video, I talk about my experience and have a few Xrays pop up to demonstrate a little detail. If you're the squeamish type you may not want to see the images – they are small, however. Read key blogs about my stim implants experiences and adventures:

Pain management is unique to all of us and the key to navigating the complex journey (I believe) is gathering as much information as possible. I hope this vimeo is of great help.
March 4th, 2021 9:36 pm

Perhaps Pain Isn’t my Brain’s Fault

By |2021-03-09T21:06:35+11:00March 4th, 2021|Categories: About, Blog, Living|Tags: , , |

Or my nervous system's fault either. Have you ever let your mind wander beyond the boundaries of chronic pain research? I can't help it, my mind flies around all over the place! Today, it's in Maroni, a village in Larnaca Cyprus. That's where my mum was born. I've been wondering alot about village life lately. And more specifically about my grandmother (Giagia) and her lifestyle in Maroni. I've visited Cyprus four times – each time without pain! I really love mum's village Maroni, it's beautiful. I always make a point of walking around the whole village when I visit so am very familiar with its nostalgic, stony, dry characteristics. I love the feeling of my feet on the ground in Maroni – not sure what that is. Perhaps a memory...

February 15th, 2021 12:13 pm

Soula & Theo Chat About Pain Management

By |2023-11-07T11:26:06+11:00February 15th, 2021|Categories: Advocacy, Film, Learn, Online, Personal resources|Tags: , , , , |

You have all heard so much about Theo and how we have (and continue) to work together through chronic pain. However, you have never really heard from Theo directly nor does [...]

February 13th, 2021 10:52 am

Life, Stitched Back Up Again

By |2023-01-24T16:13:28+11:00February 13th, 2021|Categories: Blog, Workcover|Tags: , , , , , , , |

Everything that chronic pain had undone in the first nine years of this 14-year nightmare, Theo and I have managed to finally mend. Stitch by stitch, we made a new house, founded a new livelihood, purchased a more comfy car, made new friends, welcomed a different breed of fur child and all of this in a new (unfamiliar) town. It's a rebirth! All of this, driven by the hunt for pain management after a ball pop, drop and a bang. Or was it...?

December 29th, 2020 11:26 am

Presentation: An Approach to Chronic Non-Cancer Pain

By |2022-11-26T20:58:48+11:00December 29th, 2020|Categories: Advocacy, Learn, Personal resources|Tags: , , , , , , , |

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

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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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