Busy Advocating and Making Art – My Life Management

Although pain management is the undercurrent of my life, it no longer rules my life activity.

This is a tricky mind battle that underlies everything I do. Working around my limits is very hard, but I no longer let that be the surface of my day-to-day life.

On the surface, instead, is my creativity and ongoing advocacy for health management.

It’s not enough to focus on treatment alone for ongoing health issues because our health is at the core of our whole life – it’s life management we need to conquer.

There are always limitations in life, and yes, it’s harder to live when health isn’t at its optimum, but we’re all still juggling. There are always pros and cons to weigh up.

After finding my way out of treading water and toward quality of life, I’ve shifted my focus from my health issue to what I love doing. And the balance is getting more healthy as I learn to rise above the monster.

I might not be able to get out and about as much as I want, but when I do, it’s wonderful!

Art News

First and foremost, the art news – I have a Soula Store now on soula.com.au.

Although I own Queenscliff Gallery (QG), it’s not appropriate to use the space to blow my trumpet harder than I blow the trumpet for the Australian artists we represent. There are also artworks that I feel are inappropriate for the gallery, just sitting in my studio instead of with a patron.

So, I set up a Soula Store – visit now and/or sign up to receive my updates.

Advocacy

A few years into my advocacy, I realised that we all needed more than great care—we needed a whole health system overhaul!

I’m staying on this trail because I still believe it’s the answer to avoiding misdiagnosis and the ongoing chronic conditions that come from being misunderstood at appointments.

The umbrella to not having a chronic condition is getting the right care faster. That requires excellent communication and a patient-centred approach. As you know, I built a system and App to encourage this to happen – My Health Story.

Think of My Health Story as a be-all and end-all type of keepsake of your health – your story, the most important piece of information regarding getting the right care.

It’s up to you to make people listen and pay attention to you.

The current model of care doesn’t work—you know, the one where you walk into an appointment and sit down and get asked the same questions that lead to either ‘it’s all in your head’, ‘from what I see, there’s nothing wrong with you’, ‘I’m sorry, I can’t help’, or the worst reaction of all, the blank stare?

I do know how hard it is to find the motivation to manage another thing, but like a keepsake that you treasure and touch, hug, and attend to every now and then that gives you the ultimate comfort and security, the same approach is taken to updating your story and information on My Health Story.

You might wonder what it’s all for, but then the time comes to go to an appointment, and you’re dreading the repeat of information and, worse still, the chance that this new carer won’t be able to help. Or worse still, you might forget important information and walk out with the ‘Oh, I forgot to ask…’, and it’s too late—you won’t be seeing that specialist for some time again.

The most valuable part of My Health Story is the sharing part—the part where you make a private link and email your story ahead of an appointment. This isn’t just about sharing your information; it’s about stepping up and demanding that you are taken seriously. It’s a warning to the person you’re seeing that you expect to be believed and respected and that, from the onset, it is clear you are at the centre of your care.

Geelong Health Festival

My Health Story was recently invited to the Geelong Health Festival, an event set up by Dr Jenny Huang, a GP I met when I presented at a GP Training Conference and who is part of the Banksia Medical Centre.

The event knocked my socks off – these people get it!

Our take is that the populous should understand and know about their bodies and health conditions before they occur or equip them with resources they can utilise, empowering people to manage their health.

The Health Festival of Geelong’s powerful motto is ‘Empower Your Health, Empower Your Life‘ – what a call to action!

Had I met a group of practitioners with this mindset and experience when I had my accident, I wouldn’t be in the situation I am in now.

I was so happy to present at this fabulous festival, and I met so many other providers who had set up their own services and also had the experience of misunderstanding in care. They were experts in ‘using your brain with ADHD, ‘ sexual and pelvic health, market gardens, psychology (online!), mental health, exercise (Keiser and Wellteam for men), and so much more.

The fantastic presenter next to me was Catherine Hannah, she not only focuses on poetry as a means of care but she understood sensory issues and had tinted glasses and ear pieces that could help lower the effect of loud noise and bright lights.

View the list of people who attended the Geelong Festival. You can reach out online even if you don’t live in Geelong.

And if you’re ready to make your life’s keepsake, remember that you have a two-month freebie offer as my follower of pudendalnerve.com.au that you can use to subscribe to My Health Story.