PainTrainMHS: Patient-Controlled InformationSharing Instrument

By |2021-07-29T21:02:21+10:00July 29th, 2021|Help, Pain Train, 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 |2020-11-30T11:23:56+11:00November 30th, 2020|Blog, Help, Pain Train|

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, Online, Pain Train|

(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 [...]

Printmaking packs for pain management

By |2018-07-29T16:12:31+10:00July 29th, 2018|About, Creativity, Help, Manage, Personal|

Art is not only distracting but I believe the benefit is in the expression, making something, getting frustration out of the body. Everything you need to make a linocut is in these $99 packs. I've not included paper as that part is a very personal preference. You can choose textures, colours, mix up paper to make a patch work, make cards, print on fabric, etc. The purpose of these packs is not so much about the patterns but rather about the process of carving. It's also to provide all the materials if you've never done printmaking before. Once you have these basic materials (carving tools, barren and roller), you only need to source lino and ink which you can find at most art shops!

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