PainTrainMHS: Patient-Controlled InformationSharing Instrument

By |2022-06-09T16:36:30+10:00July 29th, 2021|Help, My Health Story, Professional|

When viewing my enormous health timeline (pictured), I feel like I've put the information and experience somewhere – it makes it authentic and validates it. Few people validate our experience of living with chronic pain. But this is a way I can validate it and value it. I want others to validate and respect it too. PainTrainMHS helps me do that when I present the information. Showing this to various practitioners and hearing their responses means a great deal to me. It also means a great deal that they grasp an in-depth understanding of my experience. No GP referral letter will ever include this much detail. I always find important information about me has been left out of the letter. All these feelings and activities are part of my pain management strategy – it's not all just about treatment, it's also so much about what I manage day-to-day, and there is so much detail in that day-to-day management. What I also see looking at my timeline is how my appointments have gone from red (bad) to blank (neither here nor there) to green (good). My experience is shown precisely and all it took was a glance. Have a look at how lost I was in the first few years... it was awful!!!!

A PainTrain Post CV-19 Update

By |2022-06-09T16:36:31+10:00November 30th, 2020|Blog, Help, My Health Story|

Watch and listen to my PainTrain Post CV-19 update. I missed my health summary. I didn't feel right not having my own history. Sure I have health files all over the placed (physically, digitally, with many professionals, x-rays galore) but PainTrain is a bit of a rock for me. It's my safekeeping. After not having PainTrain for months, what I most kept thinking about was 'what if I have to go to an appointment and meet a new healthcare professional?'.

Invitation to Participate in a Research Study For Persistent Genital Arousal Disorder

By |2020-07-17T15:08:06+10:00July 17th, 2020|Help, Participate|

OLIVE Study: A Five-Year Longitudinal Study of Psychosocial and Treatment Factors Associated with Persistent Genital Arousal Disorder Letter of Information INVESTIGATORS: Robyn Jackowich MSc, & Caroline F. Pukall, PhD Department of Psychology, [...]

FeetUp (Then Take a Seat)

By |2019-12-12T21:04:45+11:00December 12th, 2019|Help, Professional, Tips|

My endless efforts to find a way to get back into regular yoga practice keep falling on their head. Pardon my pun... but I am hopeful FeetUp may help with that problem. Prior to living in the land of pelvic pain, I lived in the land of bliss practising yoga regularly – four times per week! For 45 minutes I was part dog, part warrior, a cat, a cow, even a pelican at times. I became a tree, saluted the sun and enjoyed many various poses. To end my routine, I'd slide up into shoulder stand (8 minutes), then send my toes passed my head in plough pose (for another 8 minutes) before unravelling to a corpse in Savasana pose. That was before I went for a walk!

«Χρόνιος πόνος: η ύπουλη ασθένεια που κλέβει τη ζωή χιλιάδων ανθρώπων»

By |2019-09-26T17:14:15+10:00September 26th, 2019|Advocacy, Blog, My Health Story, Online|

(Excerpt from Neos Kosmos feature story, Chronic pain: the treacherous disease that steals the lives of thousands, MAΡΙΑ ΚΑΜΠΥΛH 25 September 2019) Η συγκλονιστική συνέντευξη – κατάθεση ψυχής της ομογενούς Σούλας Μανταλβάνου, που [...]

My Health Record vs PainTrain My Health Summary

By |2022-06-09T16:36:32+10:00July 22nd, 2018|Help, Manage, My Health Story|

Um, actually, they aren't in competition. They are two very different online resources. There's no turning a blind eye or choosing to stay away from this technology change as it is affecting you right now and there is a decision you need to make within three months about your autogenerated account on My Health Record. Are you staying in or opting out? I opted out. And not because I think My Health Record is a poor concept – it's a great idea! Remember I've made a type of online health summarising resource myself because I realise how important it is to organise your health information and communicate more efficiently with your health team/s.

GPADD 2018 Dealing with Addiction Conference – I’m Presenting!

By |2018-07-19T10:35:38+10:00March 16th, 2018|Learn, Professional, Professional Resources, The pain|

GPADD 2018 Dealing with Addiction Conference – I'm Presenting! It's a topic that needs serious attention and I'm honoured to be invited to speak and share my personal experience. My aim is to share the resources that I've found that have helped me avoid dependency, and to share resources that have helped me understand my complex chronic health issue. Education is key for both the patient and the professional in the management of chronic health issues.

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