Today was my visit to my Ophthalmologist to discuss the worsening of my eye symptoms. We have known that I have Sjogren's Syndrome, secondary to my Rheumatoid Arthritis, for a few years now and up until recently I have had moderate dry eyes and my salivary glands also cause me a bit of grief. I also have … Continue reading Sjogren’s Syndrome ~ Cause of my Sagging Eyelid
This is not health related at all but it's doing my head in, so maybe a little health related!. My husband and I live in small complex of 4 town homes. Yesterday it was discovered that there was a leaking pipe coming somewhere from the mains in the common property area. Our neighbour noticed … Continue reading Just one of those days!!
I received in the post today the kit from the Project team conducting the Next Generation Sequencing for Genetic Conditions, in particular bone diseases. You may remember I was invited and I agreed to participate in this research project in the hope that: 1. We might find some definitive answers as to why my leg … Continue reading A tube of saliva…. here starts the Genetic journey!
I received a long awaited phone call last week from a Qld Hospital Research Department, inviting me to take part in a research project that is aiming to discover what genes or new mutations of a known gene I have, that may be the cause of my disease. This was something my Endocrinologist had put me forward … Continue reading It’s all about the Genes! I’m about to become a Guinea Pig!
Today was my much anticipated appointment with my Orthopaedic Surgeon and it went pretty much as I expected really. My leg is still broken and it is showing minimal signs of healing but all to be expected due to the nature of the break. He wants to see me again in 3 months, with further x … Continue reading Breaking News!!!……. ( actually news about my break)
I have been asked this question many times. Friends and acquaintances are always so relieved when they see me in person as I look so normal. I don't look sick and some of that is due to my coping mechanisms! It has also been well documented about the fact that autoimmune diseases, in general, don't cause … Continue reading How Do You Cope?
I have to go to the dentist next week and while my Dentist is lovely I really hate having to go. I'm not sure which is worse, the invasion in my mouth or whether the fact she always finds something catastrophically wrong with my teeth (thanks to the idiopathic nature of my disease) or the scary bill at the end … Continue reading Health Insurance….the joy of being on hold!
It's 11 weeks post my left femur break and surgery to insert a titanium rod from my hip to my knee. I am still on 2 crutches and will be for another 3 months, at least. My Surgeon is pleased with my progress but keeps warning me this is a long slow process with healing expected to take 18 … Continue reading It’s A Rare Genetic Bone Disease
In 2010 I was in my mid 40’s, at the height of my career as an Executive Manager in a major bank. In April of 2010, I was getting ready to take 6 weeks long service leave to spend some quality time with my beautiful husband. We were going on a road trip, through South … Continue reading My Story