Day 50!!

I can't believe that we are halfway through already! Its crazy to think about how far we have come, but its quite overwhelming thinking about how far we still have to go.

This week has bought challenges that were not entirely unexpected. On Sunday Shane's GVHD started to show itself in his skin again. Each day it has progressively increased to a point where he is now covered from top to bottom in a hot, red, itchy rash! This has been expected as Shane has been progressively reducing his steroids (which are used to treat GVHD). The problem now is the Drs are reluctant to increase them back up to a level that will treat the GVHD as effectively as last time. This means he's now on another medication, and his Tacro (immunosuppresant) has been increased, considerably.

Although Shane has had skin GVHD before, this time he's not knocked out on pain killers, so he's more acutely aware of the discomfort. He's finding that if he gets hot, it feels so much worse. So he's just been laying low all week, at home, in the air-conditioning. Today the Dr gave him some Phenergan to help with the symptoms which has conveniently made him drowsy.

Another challenge this week was finding out that Shane's Cytomegalovirus (CMV) has been reactivated so Shane was reconnected to the pump and the bag that must go everywhere with him. Again the nurses were really thoughtful about the time it goes off - 1:15am/pm! Thanks guys! But thats not the only issue, today Shane had his check up and it turns out, the pump was faulty and didn't administer any of his medication this whole week. So he's been carrying this thing around since Tuesday, for no reason, and the 10day (minimum) treatment needs to start all over again! Bummer!

I would like to take a moment to mention a friend of mine from Uni who's wife passed away this week from Motor Neurone Disease. This is such a horrible condition for people to suffer from, with not much in the way of effective treatment. Stacy was an incredible personality who truly cherished life. This world is a more wonderful place after having her influence here. Her family has asked us all to "live like Stacy would".

So, what would you change about your life today if you were challenged about your health? If you were diagnosed with a serious medical condition, what would you change? How and why would you change? What would you do thats been on your bucket list for a long time?

And more importantly, what is stopping you from changing now? Why do you need to be given a diagnosis before you step up and take good care of yourself?    

Something to think about...

xx