Tuesday, February 5
A Bad Few Days
Now I don't want to be a Debbie Downer for all my Loyal Readers, but I just wanted to give you a little bit of an update, and to explain my recent absence. Aside from the mad rush of covering schoolbooks, locating uniforms, buying regulation school socks and the like, I have been having a pretty stressful week. For those of you who don't know me personally (and even some of you who do!) you may not know that I have a rather rare disease. So rare in fact, that there are probably only about 200 or so cases documented in the world. The disease is called acute zonal occult outer retinopathy (or AZOOR for short) and it affects the retinal receptor cells of the eyes. To cut along and rather boring story short, I began having problems with my vision about six years ago. Basically, I developed a large blind spot in the peripherary of my right eye, and suffered from flashing, strobing lights in the same eye. I went to ther optometrist, cheerfully expecting him to say 'Oh yes, that's xxx and here's how we fix it!!' Little was I to know that my journey with AZOOR was just beginning. After many, many months of fruitless tests, examinations, scans, and lots of things ending with 'gram', I stuumbled upon a retinal specialist from Melbourne who had just happened to be reading a medical journal a few days before he saw me with a case study in it identical to the problems I was having. That was when I finally got my diagnosis. I was just so pleased that this problem finally had a name (and wasn't a brain tumor, as I had been told it may have been) that I could have kissed him. Then I naturally asked how it could be fixed. His reply was rather negative - 'it can't be'. So I got onto the Web and did my own reseacrch. There is very little out there about AZOOR as it is so bloody rare, but what info I did find was a little disheartening. Some people recovered, some stabilised and in others, the disease progressed until they were virtually blind. You can read a little about AZOOR here.
For the next 5 years (it took a year to be diagnosed) my vision stayed pretty much the same - a bad blind spot in the right eye which caused me to do dumb stuff like walk into walls, but otherwise not too troublesome. But this past week, I noticed a blind spot in my left eye, and a worsening in the severity of the blind spot in the right eye. Basically, this means that the disease is not resolving (this usually happens in 1-3 years after diagnosis) and once you get AZOOR in both eyes, the prognosis is dim, no pun intended. So, I am now living with the knowledge that I could wake up one morning and not be able to see. This is, as you would imagine, doing my head in a bit. Do you remember when you were a kid and you asked each other the question, 'would you rather go blind or deaf??' I ALWAYS said deaf, as I couldn't imagine life without the gift of sight. Now I am facing the reality of losing that gift and it is tearing me up. For those of you so inclined, please say a prayer that I will recover. I have an appointment with the opthomologist next week, but expect no joy there as the last time he saw me he said there was nothing he could do and to come back only if I noticed things getting worse. Thanks for listening to my whinge - must go and pull my socks up and stop the pity party. Catch you again soon xxx
- ► 2009 (72)
- ▼ February (12)