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Using PainTrain This Week With My GP

(Posted by Soula, 16 June 2018)

I had a GP appointment yesterday.

I updated my PainTrain health summary and emailed my private access link to the medical centre so they could forward it to my doctor.

On the way in, I remembered that I needed to check if my pain specialist’s referral was out of date. So,I added the reminder quickly by logging into PainTrain on my phone.

As you can see, I have a little shoulder pain issue.

Two minutes into the appointment my doctor asked, ‘What’s going on with your shoulder?’ – I hadn’t said anything about this latest issue yet! 

Continue reading “Using PainTrain This Week With My GP”

Soula Presenting at GPADD18 – Dealing with Addiction Conference

In the upcoming GPADD18 conference, Soula will draw on her communication skills as well as her 11 year patient experience and talk about chronic pain’s perception, and also present her pain management resources.

Using her personal chronic pain experience and her creative skills as an artist and graphic designer, Soula created pudendalnerve.com.au where she documents her experience and collates her findings about the condition.

Soula has come to realise that the key to living with ― and overcoming ―  chronic pain is accepting it and taking responsibility for its management. She also found that having to retell and update her story to a range of professionals was time consuming, tedious, and often traumatic and so founded PainTrain – My Health Summary. Continue reading “Soula Presenting at GPADD18 – Dealing with Addiction Conference”

Repost from Soula: I Turned a Corner

(Original post on Soula’s blog pudendalnerve.com.au, I Turned a Corner)

Theo and I continue to establish our new life in Queenscliff and are enjoying the many wonderful new aspects of our new lifestyle. We’re also learning to manage the sacrifices.

It makes me feel I’ve turned a corner.

Home, then

A couple of weeks ago, I actually did turn a corner.

After staying in Melbourne for a special family lunch, during the evening we also managed to catch up with old friends on our old pavement.

I kind of felt a little emotional pang when I turned into the city end of Gertrude Street and saw the magnolias enjoying the Autumn evening light and the little drizzle that was beginning.

Very steadily pacing my drinks, the night saw us hop around our old favorite spots.

The life turn happened when I stepped out of the Everleigh and instead of turning right to head ‘home’, Theo and I turned left to head to a city hotel. We were going to sleep at this hotel, wake up in the morning and return to Queenscliff. Theo had to work… Sunday.

I don’t often have overwhelming emotional moments. I really deal with life’s activities quite well. I mean, who would I think I was expecting a perfect life run, right? ‘Suck it up!’

But this was one of those overwhelming emotional moments and it was damn hard. I knew what it was. I recognised it as the overdue moment when I finally comprehended life had moved us on… away from ‘home’.

It finally caught up with me.

I lapped up every step away from my previous home as the rain fell on/off and the concrete took in all the glittery, yellow, autumn Melbourne evening lights. I bid abiento to each magnolia as I walked up the street. I also lapped up the arms that were around me and the huge hug that Theo and I stopped to have to mark our moment.

Home, now Continue reading “Repost from Soula: I Turned a Corner”

PainTrain and the Pain Revolution fundraiser

We’re thrilled to announce that with the donations of some special few people, PainTrain raised $824.64 of their $1,000 goal!

Pain Revolution’s goal was $80,000 and together with PainTrain, 33 other fundraisers raised $76,925 of that goal!

For full details about the Ride for Pain visit the Pain Revolution website

To get us to our goal (it’s not too late!), please visit the Everyday Hero campaign.

 

User Experience (UX) Research

User Experience is a hot topic right now in the digital health world and so the PainTrain team are hot onto it.

Thank you to Irith Williams who leads PainTrain through this process and also to Lissanthea Taylor for introducing us to her incredibly resourceful friend!

Who better than to begin the UX process than our founder, Soula, who initially had to map out her patient journey (pictured above) before delving into a very cathartic process with sticky notes. Continue reading “User Experience (UX) Research”

Putting People in Pain in the Driver’s Seat

(From the Pain Revolution website)

Soula Mantalvanos and Pain Train join the Pain Revolution

Community action and learning together is a key part of the Pain Revolution message. We need to include all people in the conversation if we’re going to make the changes needed to reduce the burden of persisting pain.

We have some wonderful people in our community that have stories to tell. They don’t ride bikes but that doesn’t keep them on the sidelines. One of those people is Soula Mantalvanos, who has given us permission to borrow some of her energy and passion as a Pain Revolution ambassador.

Soula Mantalvanos Pain Train

Hearing about the lived experiences of people in pain is critical to designing the future of pain care. We’re including the voices of people living with pain alongside our expert and professional voices. For too long, the stories of the people that live with pain, often heroically and with great resilience, have not been heard and understood. Within them is great insight and wisdom, as well as struggle.

Continue reading “Putting People in Pain in the Driver’s Seat”

Pain Train VICDOC: ‘Time-saving tool for managing chronic pain’

Current edition of VICDOC available via the AMA Victoria website

Time-saving tool for managing chronic pain

Written by Kate James

‘While one in five Australians experience chronic pain (and one in three over 65 years), the National Pain Strategy indicates that many health professionals have limited training in pain management. There is a shortage of pain clinics, public waiting lists are on average two years’ long, and it’s often left to GPs to manage complex conditions in short appointments.’ Continue reading “Pain Train VICDOC: ‘Time-saving tool for managing chronic pain’”

Pain Train: An Ambassador for the Pain Revolution 2018

Pain Train: Ambassador for the Pain Revolution 2018

(Soula Mantalvanos Jan 19, 2018 pudendalnerve.com.au)

 

(Cut to the chase, I want to support the Pain Revolution 2018!!!)

I’ve got a soft spot for Professor Lorimer Moseley.

In Feb 2011 I had just had the peripheral stimulation implant op and was slowly emerging from my darkest days.

Alone at home while Theo started a new full time job and staring at our shut down graphic design business I was still unable to do very much at all but I listened to the radio and that was where I first heard Lorimer speaking. He was on Margaret Throsby’s show on ABC Classic FM.

I heard Lorimer explain chronic pain and the brain before coming to the conclusion that he was mad and switching off the radio.

I was angry that this professional was saying that my brain was really good at learning bad things and that my brain did that in the same way – and as well as it could learn good things.

As we now know, Lorimer was right and I’m still angry… but angry at my brain! Continue reading “Pain Train: An Ambassador for the Pain Revolution 2018”

Pain Train – think of it as a patient CV

Pain Train – think of it as a patient CV

Judging by my own measures (hope you don’t mind me taking a stab here), whether you’re a professional or a patient you wouldn’t be thinking that it’s up to you to invite this new Pain Train language into your relationship. 

Would I be right?

You all know my Pain Train scenario – I instigated the use of it in my own pain management and Dr Christelis agrees that it was my job to do that. 

I’ll be honest, I don’t really mind which way Pain Train found its way into my pain management because the point of pain management is to try everything until you find something that works. 

Pain management, in my experience (and referring to a few of my own measures again) works when a professional and a patient are both active in the search and trial of options. From there, the patient explores some of the options (if not all!) that they feel might be of benefit to them.

Having used Pain Train for a while now and following all the online health record information, I’ve realised Pain Train is actually not a health record resource at all. It’s really a kind of Curriculum Vitae (CV), something a little more personal – thus the new tag line: Continue reading “Pain Train – think of it as a patient CV”

Chugging Around the Globe

I’ve met some exceptional people online who have helped educate me about chronic pain and helped with my pain management.

I don’t hesitate to write and connect with people but only if I have a question that I haven’t been able to find the answer for. I am conscious of their time.

I also make contact if I think that I may have some information that could help others with chronic pain and I can’t manage the communication from my patient voice – I reach out to the pros.

Lissanthea Taylor recently wrote a 4 part blog, Calls to Collaborative Care that was published on bodyinmind.org – it was written in my patient language.

Soon after, I saw Lissanthea comment on My Cuppa Jo’s (Joletta Belton)’s FB page (another dear exceptional person whom I met online). Continue reading “Chugging Around the Globe”