EVERY MOMENT A GIFT.

Good evening from a slightly cooler Adelaide, where the sky has been a milky blue today.   It has not been the blistering heat we have come to expect and I am thankful for that.

It is Sunday evening and we are heading into a week of Political upheaval here in Australia - it will be interesting to say the least, to see the results of the Leadership Spill in the Federal Government Offices at 09.00 tomorrow.

This picture reminded me of photographs I have of me as a child - that round and chubby face with dimples and the bow in the hair - always put there by my Mother - I think I lost more ribbons than she would have liked but she seemed to have an endless supply.

I would have been about three years old in that photograph, with my much loved koala Victor. 

I have become increasingly aware of how precious the moments are and for those who don't know - I had a difficult time with illness in 2009/2010 when I had a liver transplant and while recovering developed Stevens Johnson Syndrome.   The reason this blog was started was to keep everyone up to date as to how I was doings in recovery.     That was five years ago and as the months go by I am increasingly aware of the precious nature of every moment.

I live with the changes that transplant has brought and life is just fine, and I also cope with Stevens Johnson by constantly advocating for myself with Doctors and the prescribing of medication - it certainly keeps me on my toes as there are many I should not, and indeed MUST not take.   My General Practitioner is wonderful and has dealt with SJS before and is a great ally to have on board.   I wear Identity bracelet and have a key fob and stickers on my car to help ambulance crews if I am involved in an accident.

There are wonderful provisions put in place and life is sweet providing I live within the constraints and I am certainly not going to dwell on the unhappy times.    I was in a great place with Medical, surgical and nursing staff who all went above and beyond the call of duty and cared for me so very well.

I am spending those moments on happy things and encouraging others to do so - life is precious beyond words and a liver transplant saved my life.

I have decided there are many things I can do to promote organ donation and awareness of SJS and I am doing them and finding much joy in doing so.

I am happy to answer any questions you may have - leave a message in the comments at the end of this blog with your email address and I will be in touch with you.    I will also post a link to information about SJS for your information.

This blog started off so small and is growing beautifully and I thank you for visiting the Musings of My Heart.

Love and hugs,

http://www.webmd.com/skin-problems-and-treatments/stevens-johnson-syndrome