2020 - 2023.

Over the nine years, diseases and viruses expanded throughout the world. COVID-19 was a vital disease that suppressed any immune and neurological systems. With a quick reaction from the Government, a vaccine was made. I have nothing against the vaccine that saved many lives. I am grateful as many of my family members and mates have experienced this disease, creating a difficult time for themselves. I never got the vaccine due to my history of episodes, as stated in 01’ – 12’. I tested positive for COVID throughout the three years, nothing too surreal to stress about. I demanded getting the vaccine due to my immune system, let alone being on the Anakinra, which resulted in not having significant research on the different vaccinations. Therefore, I focused on my environment, diet, sleep, water and movement. These variables were influenced by mentors such as the Chek Institute, and Corrective Culture, evolving my understanding of a holistic health style. I dearly say the three years it was a crazy experience for everyone; being locked inside, restricted on movement, and not socialising was not great for anyone’s mental and physical health. I started my bachelor’s degree at Griffith University on the Gold Coast. It suited for a flexible lifestyle if you loved surfing because lectures were recorded, and you would watch them anytime!

Righto, back to what’s happening… everything was going smoothly regarding health and fitness. It was the best it had ever been! Surrounded by good mates, bodyboarding, training and eating well. I love to keep myself busy, whilst having two jobs and studying full-time made that concept happen. I was fortunate to gain experience at Sea World Cruises as a deckhand. Leading me to work along the Pacific Ocean during the Humpback Whale season and Moreton Island with environments such as the Tangalooma Wrecks as a snorkel guide.

At the start of 2023, my health was not favourable due to working stupid hours a week and trying to surf in-between shifts was not ideal for the recovery mode! It wasn’t until a few days before Australia Day I started to show RA symptoms, fatigued and fevers which led me to be bedridden for a good month. Initially, I was dehydrated from working in the sun and lack of water/food across the week. I was lucky enough to have MM and EM by my side and to the extent of travelling five hours south from GC to support me at GCUH, occurring numerous times in Feb. The Drs. and I saw improvements after being discharged from spending a few days in the hospital. However, Anakinra was increased to 4 times/day and with a high dosage of prednisolone steroids. It was preventing this relapse. When decreasing the steroids (due to being cortisol, your body will have withdrawals), as close as being off them, the Anakinra wasn’t reducing the symptoms. My immune system was not fighting anymore. I was rushed back into the hospital due to symptoms not improving. A new symptom occurred one morning that showed a numb left hand and foot. This is presented by my CRP, ESR and white-blood count that things will be going down south. Unfortunately, it was. Hearing about my full-blood count increasing reminded me of my 2012 relapse. That showed being anxious and traumatised was not ideal.

Over two weeks after being admitted to GCUH, I was fortunate enough to be presented by a rheumatologist team that I trusted from day one. It appeared to be a nerve symptom showing from your Cervical nerve (C5) down to the great toe extensors (L5). Over time, EM, MM and I researched multiple nerve exercises and were determined enough to improve this new symptom. I was discharged from GCUH. I headed back to Port Macquarie for daily assistance and to be surrounded by family and mates. After a while, I headed back home to the GC. I was improving by surfing, working, and building strength again. After slowly decreasing the prednisolone, I showed to have symptoms yet again.

At the end of March, a major relapse was prevented. It was as common as the 12’ relapse. I was fortunate not to have swelling on my brain instead, it was still on my left limbs. With forever so seemingly, fevers were reaching 40 degrees, with pain, it was impossible to move a muscle and barely able to walk. Again, I rushed back to the hospital, which seemed like the nine-year episode... CRP and ESR were skyrocketing. Observations were a major concern (low blood pressure and oxygen levels), and the nurses and emergency doctor were straight onto it. I was pumped on Endo and painkillers, yet they seemed to ease the pain but did not endure enough of it. The next step was antibiotics, adrenaline, and many litres of fluid via an IV drip securing to improve my blood pressure and oxygen levels. However, it seemed my bowel wanted to collapse with all the liquid getting flushed within me for a few hours. I wasn’t in any rush to head to the toilet. Due to all the actions and procedures of what happened on an early Friday morning, I was located in the ICU ward. When the nurses tell you that you are getting moved to the ICU ward, a perspective took place too dark and traumatised. Spending 12 hours there obvs was improving. I relocated to the immunology ward, where I have been for the past six weeks.

Over the past three weeks, I was still bedridden, sleeping half a day. I was racked back up on methylprednisolone steroids (500mg) and a high dosage of Anakinra. A perspective from my specialists was that my immune system had built antibodies against Anakinra, therefore, my health was not improving. Thus, I’ve been so unwell from Aus. Day. This occurred from the Interleukin-1, a cytokine, one of 11 pathways that regulate your immune system. Since research and technology are forever evolving, an alternative medication called Canakinumab is within the Kineret family but much more advanced. The Canakinumab is a re-joining human bind and blocks binding receptors1. Therefore, shown to prevent autoinflammatory diseases.

In the 3rd week of my administration, we quickly jumped on the canakinumab bandwagon whilst tampering with the prednisone. Due to being a slow-release rather than a fast release from the Kineret, it didn’t show the effective side until day 8 – day 12. Each day showed improvements. Over two weeks of being monitored and tapering off the prednisone, inflammation markers were slowly heading to baseline, and symptoms and energy levels were improving. With MM and EM on a regular schedule to come to hang with me for the day, the day was far better.

Every day looked like this; wake up at 6 am, make the bed, mediate in the sun (morning sunlight is major), walk, stretch/mobility work, shower, breakfast, MM/EM would come up, wait until blood taken for monitoring and waiting many hours for the doctors do their rounds for an update, we would head out, swim in the ocean and study or stay at the hospital, see the sunset (late afternoon sun is also key, sets your Cardium rhythm), dinner and gratitude from the day. Mornings were my favourite part of the day. In between all this, I was grateful enough to have my mates come around, appreciated by you all.

In week 6, my obs were great every day. I felt stronger and more confident within. After a long haul, I resumed to work and uni throughout the weekdays and returned to GCUH at night. I was also tampering off massively from the prednisone from 45mg to 7.5mg within a few days due to showing evidence that the Canakinumab is working. Due to this, the team had a meeting with the board of GCUH to get the Canakinumab approved and funded, which came out as a success. Finally, there was light at the end of the tunnel. Two days later, on a fridee arv, after a long haul, I was finally discharged. Now what?

Being back at home and having normality is a great feeling. Continuing to head back to work and study on campus without being anxious or seeing million people at once for a long time was daunting. Getting back in the water has been yet the best feeling! With mobility work being worked on daily, it sure has supported me with daily activities. Getting in the water has also been supported by the rebuild. Still-yet improvements from physio to rebuild strength, this felt like a good setback and will start a new chapter in life.