Excerpts from a book I'll never write

This is a post I didn’t think I’d have to write, or that I'd be writing so soon. Although it’s probably not that unexpected after the last few posts that outlined hospital stays and new treatments, but when you also see posts about life on the road you kind of hope that that part of every day is the one that is taking over. Sadly chronic illness is a full time job and whether I like it or not, I can’t get rid of the illnesses that plague me. Life on the farm has been good to me, the best thing that I could’ve done! It’s given me a chance to be in one spot while my body went through the worst flare it’s ever had, and allowed me to realise just how much I love animals. I mean I always knew I loved them; there was no doubt about that, but actually getting up everyday to work with the camels has just enhanced that love. Sounds mental saying that camels have made me love animals more, I mean they kick in all directions and kick to kill (and their kicks hurt like hell, believe me!), wil...

It’s been a month since I sat in hospital for 5 days, 3 of which where I was having steroids flowing through my veins at 65 times my usual daily dosage. The reason? My body had been flaring and nothing could control the pain and fatigue that I was in so drastic measures had to be taken and a hospital admission was our only option. It was a mission to organise, and hospital admissions didn’t understand my need for being there, but Mark, the immunology registrar on my case was advocating for me and after one of conversations realised how severe I had gotten so suggested that if I could make it to Sydney, I be admitted via emergency. So plans were made. We booked fights, a night in a backpackers, and jumped on the train the following evening. It was two days of travel but we finally arrived at Westmead emergency room on Wednesday at 11:30am. I’ve said it before, and I’ll say it again: the ER doesn’t like the chronically ill. The doctor who first saw me, while he was efficient and lis...