Greetings to our Summer Aussies and Winter North Americans. Amazing activities to report in this edition, starting with our work in the launch of Australia’s Parliamentary Friends of Autoimmune Diseases. Our dragon Dr. Charmaine presented our Know Your Numbers patient tool to Australian Parliamentarians and also at the 3rd annual Asian Pacific Conference on Integrated Care. 

We share our happy snaps of our Dragon Fest 2 in the Blue Mountains and very sad news on the loss of our beloved volunteer and Dragon Talks Co-facilitator Paul Kett.

Our Carer’s Corner dragon Alasdair has stepped in to help Charmaine as co-facilitator of DT1. He is continuing to contribute to the newsletter. This edition has a Carer’s guide to managing a flare. Living alone and currently experiencing the return of my RA symptoms, I’m so grateful for the love and support of all my dragon friends.

We are delighted to be kicking off our new section ‘Thriving Over Surviving” in which dragon Cheryl of Winnipeg, Canada, is writing about her creative life We are always amazed at the wonderful, courageous lives our dragons live while managing their conditions. Prof. Phil Siddall, Pain Management Specialist, at a recent Dragon Talks spoke about how important it is for us to develop other interests and purpose.

Would members consider providing feedback to the Australian Pharmaceutical Board Committee?  See link to the Patient Hub on our Dragon Talks Facebook page.

We wish you a wonderful festive holiday and look forward to staying in touch in the New Year, encouraging self-care and support with each other.

Editorial team Susan Hughes & Charmaine Jones

PS. Help needed! Susan is hoping to rotate off lead editor in 2024 so now calling for volunteers to coordinate and edit our quarterly newsletters. Please email her if interested This email address is being protected from spambots. You need JavaScript enabled to view it..

PPS Cover above Pic: l-r: Linda Gaudet (DT1), Dave (Veg) Armstrong (partner), Charmaine Jones (DT)Susan Hughes (Director)Julie Armstrong (DT1)

l-r: Our Dragon Team: Susan Hughes, Exec. Director/Patient Chair; Dr. Charmaine Jones, Director/Dragon Talks Facilitator; Michelle Clewett Canberra Patient Ambassador/ Dragon Talks Facilitator; Andrew Thirwell, Director,  Alison Marshall, Director/Treasurer; Denis Tebbutt Chair/Exec Director Terry Jones. Exec. Director/Co. Secretary

 Front: Dragon Patient friend, Amanda Lawrie-Jones, Chair of Board, Scleroderma Australia

As Australia’s  organisation proudly  offering online support to all patients and caregivers of autoimmune diseases to English speaking countries, we had great pleasure in assisting in the launch of Parliamentary Friends of Autoimmune diseases.

Our dragon Charmaine had the honour of presenting our first patient resource ‘Know Your Numbers' to Parliamentary leaders, patient organisations and clinical peak bodies - the Australian Rheumatology Association, The Australian College of Dermatology, and the Gastroenterological Society of Australia. 

Know Your Numbers Patient Tool – monitoring tests and developing relationship with healthcare team.

Thanks to the invitation by Canadian Dragon Charmaine, who with her partner Dragon Linda, is currently visiting their family in Australia, we held our second Dragon Fest gathering of 20 dragons, including all Aussie PACs, several caregivers, friends and supporters (including 4 Dragon Claw directors) over a sunny spring November weekend. 

We gathered at two venues at Blackheath town in the World Heritage National Park of the Blue Mountains, an hour’s drive west of Sydney.  We were a happy group of all ages ranging from Charlotte & Jan’s three month-old baby Ellery to two Octogenarians Robin and Jan. Lots of fun and games, sing-alongs, bushwalks, cafes and shopping were held. Endless laughs and chats over a delicious meal cooked by Dale on Friday night and barbeque at Federation Gardens  on the Saturday night. Our appreciation and gratitude to the organizing committee Charmaine, Anne, Linda, Dale and Robin and everyone who helped over the weekend.  By popular demand, everyone wants to repeat this gathering next time our Canadian dragon friends visit Oz or potentially find a location accessible to all members, North American and Australian. Ideas are most welcome! 

Who are you? Is RA part of how you define yourself or is it other?

I am a 67-year old, mom, grandmother and retired educator living in Winnipeg, Manitoba, Canada. Up until my first life-altering RA flare (Oct 26, 2021) I was super active, felt youthful, somewhat invincible and able to do just about anything. I was living a very full, privileged life. I had boundless energy. Although I try not to have RA define me it is challenging to not think about it as I learn to navigate my new situation. Fatigue being the most prevalent challenge. But like everything in life we adjust and adapt - and count our blessings. There are gifts within this new way of being. Learning to slow down and appreciate the more subtle nuances in life being one of them.

Describe your art. What do you make? How to you create?

My current work is focused on water, specifically fresh water. I am exploring the world just below the waterline; often using the surface of the water as a lens. I attempt to capture the illusive space between two worlds - above, below and between. I love the idea of taking the viewer to places they wouldn’t necessarily get to experience first hand - unless you like swimming in weeds! Using the images I capture, I create photo weavings (combining images in visually intriguing ways, or creating woven water vessels), or I paint on the photos to further alter the image. Sometimes these painted photos get incorporated into weavings. Sometimes the photos are enlarged and digitally printed. Sometimes I alter these prints using drawing media. I am currently experimenting with printing underwater images on chiffon fabric. The intent being when they are exhibited the air currents will gently move the fabric - water and air are never still. The ideas continue to evolve.

Why do you create what you create? 

The answer to the question is something I ponder constantly. As visual artists sometimes we know exactly where we are going and why. And sometimes we travel more intuitively, letting the why organically evolve. As the journey unfolds one’s ideas develop, take shape and offer new directions and possibilities. And eventually clarity. Big picture, the ideas I contemplate have to do with the environment, with water access, with the importance of being in nature for inspiration, humility, healing and deepening my understanding what we have to lose.

This is my artist statement from the group exhibit I was just in at the Galleria Buhler Gallery in Winnipeg. The exhibit was titled: Planet Love.

“I am processing the profoundly overwhelming state we find ourselves in by exploring and visually sharing the gloriousness of this planet - in the hope that we will collectively find clarity and a restorative, sustainable path forward. 

My artwork is an expression of my experience with, understanding of, and connection to, water. I am curious about what is under the water, just below the surface, as well as my own interactions with this element and the ecosystem it hosts.  By capturing the viewer’s attention with colour, light and texture, I invite them to  contemplate and wonder about the interwoven imagery, find a connection to, and reflect on, their personal relationship with water. 

Water as an integral part of the environment.

Water as the source of all life. 

Water as a human right.

Water as creative inspiration.”

It was very affirming to be part of Planet Love. I received a lot of positive feedback. Now I have an even bigger exhibit to look forward to. In March 2024 I will be showing my work at the MHCGallery here in Winnipeg. I will have the main floor gallery for my first ever one-person exhibit. I’m excited! And a little nervous…

Describe your process. What influences and happenings have led to this point? Has your process been altered by RA?

Prior to this particular body of work I drew my inspiration from rocks, just above the waterline. Kayaking was an integral part of this process - the challenge of getting myself independently to water and spending the day paddling solo. I captured images of rock and interpreted these images on canvas with acrylic paint. These paintings were about far more than the rock of course. My strength, independence and desire for adventure were reinforced as I focused of this most primal earth material. I exhibited this body of work in a two-person show at NorVA (Northern Visual Arts Centre) Flin Flon, Manitoba in 2019. The exhibit was titled, Earth Song.

Post-exhibit: It was time for a change of focus and I was searching for new visual challenges. Then Covid came along. One thing led to another, as all creative journeys do. While out paddling I started to experiment with underwater video using my iPhone in a clear waterproof case. I was fascinated by what this fairly simple technology revealed. Immerse your phone in water and an intriguing new world is revealed!! This was so exciting! (I know, I know, David Attenborough does an amazing job but I was fascinated but what I could capture.) Back on land, I reviewed the video and took screen shots of what I want to consider for future work.

My work really gained a deeper, more thoughtful focus once I was dealing with RA and leading a physically restricted life. I actually had time to focus in a quiet, albeit, more confined way, on my art. It’s what kept me going! Although I have not been able to kayak independently - yet - this physical restriction has led me to explore in other directions such as videoing my weavings underwater at a beach. Restrictions lead to new ideas! One of those RA gifts. 

How are you present in your work? 

My presence is in each image. I am present in the creation of the work. It’s not about being literal; it’s about subtleties; the undercurrents. I am offering the viewer the opportunity to make their own connections to the work and hopefully see themselves in it.  

What has influenced you?

First and foremost the lakes in the Canadian Shield have been a huge influence. This rugged, primal environment has played an important role in my life and my work for many years. My passion for water has taken on a deeper more thoughtful role given our current state of affairs environmentally. My quest to work outside the square of the canvas has also had an influence. And in a very contemplative way, RA has had an influence - allowing me to go deeper within my subject matter and find my way up and through. At the same time my work is very separate from my diagnosis. I do not make art about my health. 

But like all things in life, everything is connected.

Our Dragon Talks1 Facilitator Dr Charmaine Jones presented our first patient resource, ‘Know Your Numbers’ at this  international health conference at The Wesley Centre, Sydney. Delegates came from New Zealand, China and other countries to present their health programs that were being successfully developed in their communities. These programs varied from prisoner health in Rotorua, NZ, AIDs treatment programs in Sydney, to working with highly marginalized residents with a range of barriers to improved health including poverty and addictions.

Dragon Dr. Jones shared the challenges of her Rheumatoid Arthritis patient story and when facilitating Dragon Talks, discovered how patients needed to have a new tool to help understand and monitor their medical condition(s).  She led the development of ’ Know Your Numbers’, which has proven to be an excellent way for patients to further develop their relationship with their healthcare team” said dragon Charmaine.

Dragon Patient & Carer Advisory Committee Chair, Susan Hughes said “hearing Charmaine’s Patient-Clinician personal story was powerful. It is about a doctor who really connects with her patient friends because she is sharing the same disease. She wants to make a difference by encouraging our patients to self-care…..having this tool is a great help. We are very privileged to have Charmaine from Canada, regularly visit Australia with partner, Linda to spend time with her Australian family in Newcastle. She is not only our first Dragon Talks Facilitator but also a director of our Charity’s Board, thanks to Zoom meetings at 10am Australia/6pm Canada.

Being Aware of Flares

When a partner has an auto-immune disease flare it is a reminder to the carer that the day to day routine and any current plans may need to change quickly, it has to shift into a previously developed action plan to manage the pain and discomfort, seek medical help as required, but most of all the routine change must appear to slide seamlessly into the new routine until the flare fades away.

Generally ,the first flare occurs well before a definitive diagnosis, it is unexpected, worrying, painful and stressful for your partner. You may be about to become a carer, but you haven’t realised that yet, you are probably mostly concerned about your partner, and what this will do to both your daily obligations and routines.

As time progresses the flares return, the frequency and intensity only affected by an eventual diagnosis and treatment. During this time both you and your partner have subconsciously developed a routine to cope with the onset and duration of the flares. Once the diagnosis has been made, and your partner has finally settled on a medication that appears to be working, you, as the carer, need to reflect on how things had to change during the flares. You can now develop a routine that you can move to, one that copes with your extra duties and workload, and one that helps mitigate any guilt your partner may feel at seeing you double your efforts to maintain a stable, peaceful and loving environment for you both while they suffer through the flares.

Flares are very painful and stressful for your partner, but they also have a toll on you as the carer, a heavier workload, more worry, a disrupted routine with more opportunities to “miss something”. Your routine needs to have room for you to take care of yourself, physically and mentally, and I am sure your partner will recognise and respect the time you take for yourself, time with the kids/grandkids, walking the dog, a quick “Happy hour” at the pub perhaps?

As you ponder this, keep smiling and striding into the future, all the while taking care of your partner and your own physical and mental health.

Summary of DT2 for the last quarter

During national carer's week (15-21 October), we took time to acknowledge and celebrate the people who provide us with support and care to manage our autoimmune conditions, and were privileged to hear directly from the partner of a DT2 member about their experience. Dragon Jill talked about how uncertainty in health technology assessments might be better managed. Dragon Jackie revealed the psychological, physical, and social benefits of interacting with animals, which featured a number of DT2 pets! Dragon Claw Director Terry Jones presented the latest video co-developed with Borroloola communities to promote the importance of medical adherence in Aboriginal communities. We also explored the art and science of practicing gratitude to improve overall wellbeing, and how we can piece together our respective health journeys to better understand our conditions.

Dragon Talks 2 (Australia) - Upcoming topics:

• 4 December2023: One of our Dragons will share their personal journey with diabetes.
• 11 December 2023: Guest speaker Dr Susan Arentz from Western Sydney University will talk about traditional, complementary and integrative medicine in autoimmune conditions.

Thank you to all for supporting DT2 in its first year of operation. DT2 meetings will pause over Christmas and New Year (11 December will be the last DT2 meeting for 2023) and are expected to recommence on 15 January 2024 with another diverse program of topics in support of self-care.

Dragon Talks Enquiries please contact This email address is being protected from spambots. You need JavaScript enabled to view it.

Help Lines

National Help Lines with Muscular Skeletal Org, Arthritis Australia and Chrohn’s and Colitis Aust.

Our friends at Musculoskeletal Australia (MSK) provide a contact free national Help Line! Do you have questions about dealing with pain, your musculoskeletal condition/s, treatment options, COVID-19, or accessing services? Then be sure to call their nurses on their free Help Line. They’re available weekdays between 9am-5pm on 1800 263 265

Call the toll-free national Arthritis Infoline on 1800 011 041 for information about arthritis and other musculoskeletal conditions including self-management, community programs, seminars, support groups, and other resources. The Arthritis Infoline is staffed by health professionals and specially trained volunteers in your state or territory who can answer most questions about living with arthritis.

For our 100,000 friends with Crohns and Colitis Disease – crohnsandcolitis.org.au, National helpline 1800 138 029
Canadian links: https://arthritis.ca/support-education/support-resources/arthritis-lin
Canadian Arthritis Patient Alliance CAPA https://arthritispatient.ca
Gutsy Support - Gutsy Peer Support - Crohn’s and Colitis Canada crohnsandcolitis.ca