How this story started … a personal journey

Back in 2009 I was diagnosed with an Autoimmune disorder. I recall initially feeling utterly isolated .. what are autoimmune disorders? and how is this going to play out.   It started with a couple of days of gradually feeling more and more unwell, with my skin turning yellow and my balance becoming an issue (due to nausea) I got to see my GP who put me into an ambulance where I was admitted to the Liver Transplant Unit at Auckland City Hospital. The team were fantastic and the level of care a comfort as they worked on a diagnoses over the coming days and weeks. My bloods were flown to Australia for a diagnosis which came back as AutoImmune Hepatitis. Prescribed large doses of Prednisone to lower the inflammation and Azathioprine to suppress an over active immune system, I quite quickly started to recover.

Once stable and released from hospital I relished being back home. In my surrounds, my garden and my kitchen I had time to assess, reflect and get some clarity on my future. I developed a sense of ‘autonomy’ around were I was and what I wanted for my body in the near and distant future. The opportunity to look inwards was calming and this space bought forward lots of questions.

Am I happy masking the cause of what is out of balance inside me, by treating the only the symptoms ?  Does treating symptoms with pharmaceuticals come at a cost ?  Is such an approach safe long-term ? Would it be possible to refine and eventually replace the pharmaceutical load on my body and walk a holistic and whole body approach ?

A lover of reading, I read and read. I asked myself what true ‘health’ would look like for me. I questioned if a lifestyle + mindset evolution could support my recovery and ensure my future well-being ?

I had a good grounding of what healthy diets were. Growing up with a health conscious mother we had wholefoods, raw foods & nutrient dense foods in our home, so the 'food as fuel' concept was something I inherently understood. I pretty quickly realised that I had gone off-piste for the past 20 years. A wake up moment (often we need these). Relatively quickly I went back to consuming less food, cleaner food, more whole food(s) and making food from scratch, which I love. To this day I still prefer to source seasonal fresh ingredients and cook from home over buying takeaways. The thing I found was when you take stock, reflect, grow your knowledge and choose a more mindful journey you feel empowered and that has positive spin-offs for your mind and body.

Feeling buoyed about getting back to clean fuel I realised I needed to be more disciplined about daily movement. I went back to yoga and walking every day. It helped clear my head. And get me out of my head. I lost and maintained my weight (never one to want to be stick thin, in fact I’ve loved my curvy woman body for decades) and was feeling stronger by the day.

By this stage I looked to my nearest and dearest that I was once again that bubbly, happy woman they loved. But I found so few people (neither family or friends who usually 'spoke' my language) understood what I was going through. They literally had never heard the word ‘AutoImmune’ and reading their faces I could tell they simply couldn’t comprehend what that was. I realised while I needed to keep growing my knowledge around health I also needed to grow some new humans on my team.

My specialist couldn’t put me in touch with other patients due to privacy issues. I get that and respect it. And I began to question if growing my tribe could provide a real connection not only for me, but maybe for all of us living with an AutoImmune disorder here in New Zealand. I searched NZ based disease support organisations and found the majority of them bland and benign of a heart. I wondered if I could build something more organic and open. Could I, a paediatric nanny and full time single parent with business skills but no skills in ‘bringing a community together’ reach out to other New Zealanders living with AutoImmune disorders ?
Of course it really wasn’t a question of viability, I have always been ambitious. It was more so a not ‘if’ but ‘when’ moment.

Autoimmune NZ would need to lead with the stories and connections of real people. It would need to be genuinely helpful and based on positives, encouragement, communication and sharing. It would need to be non discriminatory regardless of what AutoImmune condition you have. It would need to be health focused highlighting that inclusive of medical diagnosis and a medical based trajectory, we also have an opportunity here.  I noticed that somewhere along the way humans have resisted our responsibility to ourselves and looked to medicine to heal all and so in a respectful way, I wanted to acknowledge empowerment. I wanted to quietly suggest we embrace the responsibility we have to ourselves and our beautiful bodies, which carry us through life .. through these challenges, and growth & happiness. I wanted to gently suggest we become courageous by taking ownership of what we have been presented with and in turn be proactive in our recovery. 

The plan was to bring people together regardless of location so now the 'thing' that was unfolding also needed to be available in an online and social capacity.  I knew if I failed to make a plan, I was setting myself up to fail. So with not a single idea on how to build in an online arena I developed a plan and set forth teaching myself code on my way to building a website and the many evolution’s thereafter.   Through failure, tears and some successes my concept morphed into reality .. a new kind of 'social' platform to connect others was taking shape.

And it turns out my love of words and imagery finally had an outlet and so for hours and weeks and months and now years of reading and writing, I am thrilled to say Autoimmune New Zealand is still afloat in this online arena.  My hope remains the same, to bring people together, to grow awareness, to share experiences, to build friendships and grow an understanding for those of us living with an Autoimmune disorder here in New Zealand.

I look forward to hearing from you.