Born in 1968, I live in Melbourne Australia, with my husband Max and dog Zelda. I studied fashion-merchandising working in industry for a number of years. I then went on to teach fashion merchandising at RMIT University for 10 years. I continued to run my own small business on the side designing and supplying eveningwear to retailers Australia wide.
In 2009 I was forced to reduce my work life due to the unexpected diagnosis of bowel cancer, this coupled with the life threatening genetic disease cystic fibrosis (CF) was a life changing event for my whole family.
I now spend my time between casual work at Cystic Fibrosis Victoria, developing costumes for the Australian Girls Choir and focusing on keeping well. I believe that a good understanding of your condition, and an engaged network of friends, family and health care professionals are the key elements to better outcomes and a better quality of life for people living with a chronic medical condition like CF.
Diagnosed with cystic fibrosis shortly after birth, the only issues I had as a child were digestive (not really that serious, just a bit uncomfortable). In my early twenties I had my first admission with a chest infection, suspecting that I had just over done it. Over the next ten years I averaged an admission every two years living a very normal life.
In February 2014 I knew I needed to slow down, post cancer, chemotherapy, a bowel and lung resection my body was not as strong as it used to be. I made a decision to reduce my work life and we moved closer to my family. I was struggling to keep my weight on and choose to have a peg inserted to assist in maintaining my weight, a week later I came down with a serious chest infection that completely devastated my body. I spent six weeks in hospital recovering and six months with IV antibiotics. I went from having a reasonably active life to being unable to walk without oxygen due to such severe lung infection.
I was unable to draw enough oxygen into my lungs to walk a short distance I had never known a feeling like that before. I have since recovered but managing my CF has become all consuming in an attempt to claw back my life. I sense my limitations now where in the past they were easier to ignore.
I have started this blog as a way to keep my family and friends up to date with what has become a busy time managing my health. Armed with a positive attitude and a passion for life, it is my hope I can inspire others with CF or other conditions to “fight the good fight” and move forward with hope, humour, knowledge and strength.
CF is a complex and little known illness, I would also like to inform and contribute to better awareness of cystic fibrosis (CF) in the broader community.