My Story Nicola

The first Lupus symptom I developed was a facial malar rash (butterfly rash). I was 16 years old and still attending high school. I saw a General Practitioner (GP) about it as I thought it might have been acne. The GP I saw had dealt with patients with Lupus before and suspected Lupus was the culprit immediately. He ordered a series of blood tests which confirmed it. I did not realise at the time how serious the diagnosis was going to be. I had never heard of Lupus before. I walked home from the medical centre in a state of shock not knowing what was going to happen to me and thinking about how I was going to tell my Mum. I was reassured when my Mum told me “it will be ok”.

There have been a few times when I have said “goodbye” to my family not knowing if I was ever going to see them again.

The Lupus very quickly made itself known. I was hospitalised numerous times over the next 2 years for sometimes very lengthy periods of time due to kidney stones and inflammation of the kidneys causing me a lot of pain. I was put on high dose steroids. My weight ballooned, I developed a moon face and my moods changed dramatically. I suffered from terrible migraines and serious depression along with some psychosis. My body did not adjust easily to the multitude of medication I was now taking on a daily basis.

It was a particularly hard time for my family. I lived at home with my Mum and two brothers. Mum had recently split from my Dad and she was studying to become a Caregiver and also working full-time to provide for us. Money was very tight but Mum always made sure I had the medication I needed and was a constant companion at my bedside in the hospital.However, even though I spent so much time in hospital I still managed to complete an Early Childhood Education Qualification by having my course work delivered to me in the ward and completing it while receiving treatment. I even managed to work part time in a takeaway shop.

Wanting to put my Childcare Qualifications to use I started working in a Childcare Centre. It soon became apparent that the work would be too physically demanding and it required me to be outdoors in the direct sun light. This made the Lupus more active. I again became very unwell. I had no choice but to resign from that job.

I moved out of home. I was in and out of hospital for the next five years with kidney problems and was diagnosed with Anti Phospholipid Syndrome after developing Deep Vein Thrombosis (blood clots) in my legs. I was put on Clexane (blood thinner) injections. It was a challenge to inject myself to begin with but to be independent I had no choice. Because I couldn’t attend classes every day I decided to complete more qualifications via correspondence. Over those five years I completed Diplomas in Mental Health, Organisational Psychology, Human Behaviour and graduated with a Bachelor’s Degree in Psychology. My health continued to plague me but I didn’t let it stop me from doing what I wanted to do.

I started working full-time when I turned 18. I have worked in Mental Health Services, I have advocated for people with disabilities, I have assisted people to find work, I have tutored at-risk youth and more recently I have worked in administration. My kidneys continued to trouble me and I have been plagued by blood clots and have even had a brain hemorrhage. I have had diagnoses of endometriosis, chronic fatigue and cancer among others. My treatments included immune suppression, more steroids and chemotherapy as well as many others to counteract the side effects. I have had more stays in hospital than I care to remember. I have spent birthday’s, Christmases and New Years in hospital. There have been a few times when I have said “goodbye” to my family not knowing if I was ever going to see them again.

I have been married, faced infertility, attempted IVF (unsuccessfully), and divorced all while battling illness. With every passing year I become more of an expert in my own diseases and the treatments available.

It was not until 2015 that I became too unwell to continue working full time. I had recently had my partner’s young son come into our care full time. My blood pressure increased with the added pressures of custody hearings and lawyers’ fees and my kidneys began to go into failure. I was prepped for Dialysis. But as the days passed and more chemotherapy began to take effect my kidney function improved. Having to take so much time off work I was for only the second time in my life forced to resign from my job. My kidneys don’t function well and I will need Dialysis in the future but for now I am enjoying life. I work from home which enables me to spend more time with my son. The added pressure of working full time is no longer a factor. It has certainly been a roller coaster of ups and downs but throughout my Lupus journey I have always had the most amazing and unfaltering support from my family and friends. My loved ones have been by my side to battle with me through the darkest times in my life and to celebrate alongside me through the happiest times. My Mum is never far away to tell me “it will be ok”. And somehow it always is.

A goal I am working towards is to become an advocate for others during their journeys of illness and wellness. My hope is that I can someday help others and tell them “it will be ok”.