Gabby's health journal - Introduction

I have a rare auto-inflammatory disease called Schnitzler Syndrome for which I have to inject daily with Kineret (Anakinra).  This was on the Government's PBS list, so I only had to pay peanuts for it.  But a couple of years ago, it was taken off the PBS list, which meant that I was without it for about 6 months because I couldn't afford to buy it.  It costs around $12000+ per year.  And no other medication gives me any relief - except for long term, high dose steroids - which was out of the question. I was very, very ill.

Then the Mater Hospital, Brisbane, came to my rescue and agreed to pay this huge sum for me. I can't say how grateful I am to them because without Kineret my life is a living hell.

While I was without any medication, I lost 25kg and lots of my hair fell out because I found eating very difficult and I wasn't getting enough nutrition.  Once I started injecting again, however, my appetite returned ... with a vengeance ... and I ballooned up to 93kg.  My blood pressure also went up, of course. Coincidentally, around the same time, I came across the movie/documentary called Fat, Sick and Nearly Dead, which gave me the much needed boost to change things.

My rheumatologist had suggested I try to cut down on my dosage and I think this is a good idea.  I wouldn't be such an economic burden on the hospital and it would just be great to be less dependent on medication.  Ideally, I'd love to take zero meds, but if I could get it down to once every two days, that is probably more realistic.  However, at the moment even that is not possible.  I got very ill after just 30 hours without an injection.

But I'm hoping that healthy living may help me to change that situation and now I'm cutting down on my injections VERY SLOWLY - every 26 hours for a week; then every 27 hours, and so on.

So, I've started a juice fast and a health journal (see forthcoming posts).