A NEW DAY - NEW HOPE - TECHNICALLY!
Na, things are going ok... Its a bit rough lately with pain and such... As of two days ago my left leg is stuck in a bent position so I can not straighten no matter how much I try to move it or push past the pain... Its basically seized up... Dumb huh??
But I can still put on a big smile and that makes all the difference! 

Today we had a lovely day... It was a very quiet morning... I was up till 3am with pain and didnt sleep too well so I slept in for a bit then Mum came and got me up then bout 1pm we had friends come over for lunch - and they even brought lunch with them! We had a 3 course meal! Cheese and crackers, then soup and fresh bread then we had date scones after that! Phew, it was soooo good! Then another family friend came over and spent the afternoon with me while Mum, Dad and my sister went into town! I enjoyed chatting and hanging out soo much, though I kept getting to mid sentence point then forgot what I was saying -- that was annoying -- but Ive been doing that a bit lately -- I think its just with medications, lack of sleep and pain! 

I wouldnt mind not having a sore tummy all the time and after eating -- some days it has me nearly ready to scream in pain... I told my specialist that I wished we could do low dose Ketamine infusions at home as the medications I was taking for the breakthru pain arent working anymore very well.. lol.. But I know it will work out! You cant so thats that! lol.

I wanted to address something briefly... People keep saying that its soo exciting that I can have a soft blanket over my leg and I can get up with help to use my walker in very short distances... That things are sooooo much better! I wanted to try and explain something here... Cause I know its very hard for people to understand -- and you cant 'see' pain which makes it harder for others to understand... 

Yes, I can get up and with a lot of pain use my walker for short distances and yes, I have a soft blanket on my leg - but the contray side of that is the pain is now on the right side of my body as well as in my stomach, and the CRPS is also affecting central nervous system stuff like where your body controls its temperature... I had worse pain before the first Ketamine but things now arent so hot either... Instead of getting better like it was meant too all it has done is stopped getting worse where it was but its moved on and is more wide spread through out my body... Its not as easily controlled now (this would of happened though regardless of Ketamine, so Im blessed to be having it to leesen the severity of the symptoms and pain)-- this was never have meant to have happened at all -- and for it to be spreading as quickly and fast as it is is also very scary... 

Personally I think it was better before Ketamine as I still had the hope of it working really well as it wasnt affecting as much of my body as it is now... Ketamine is still on the cards and will hopefully have my next round this week but I now know its going to take many more treatments than what we had possibly thought and its going to be a much harder and longer road....

I know I will make it but Im also very tired which is totally understandable... It scares me to think we are running out of options... I know its hard for people to understand whats going on or how serious things are - especially when Im not worked up and depressed about it... I still have my smile and can hold a conversation... Heck even I struggle with understanding where everything is at... Its hard when its not easily explained or understood... We need more awareness out there of this horrid disease... Especially when it gets to stages like these!

Im out of my Doctors expertise as he has told me and falling out of others hands too I just pray that I dont fall out of my specialists hands! Though he is in contact with people in the States and in Germany and such so I am sure I wont...  Above all though I know I will never, ever fall out of Gods hands... He will ALWAYS have me in His hands and I know I can ALWAYS count on him when I feel lonely, worried afraid or scared!!

Im determined to not loose the ability to use my walker - even though I can no longer get my left leg on the ground and my left arm feels like your trying to put pressure on broken bones at times,... Im determined not to loose the ability to have anythiing touching my leg... I sleep with pillows keeping the blankets slighty raised up off my legs at night but I can still have my soft blankets during the day touching it... These things I am determined to keep going and pushing through with, as well as with showers.. Though I dont have the water much touching my left side... By the time I get out of the shower (I use a shower chair), my foot and half way up my calf look black and my left hand is freezing cold but deep purple... I tell you, it does look pretty funny!! haha... Always gives me a little giggle...

I was reading a caringbridge profile last night of a girl who was fighting a battle and died... I guess that puts everything into perspective doesnt it?? Im blessed to be here... And even if my battle they tell me is life long at least its not terminal...

I will keep you guys updated with what happens with treatments and such... Im still positive, trusting God and know he has a purpose in all this... I will keep hoping and believing...

Please keep the prayers coming... It is a long hard battle and is very tiring at times... Also for Mum too!! 

Thankyou for comments left --- yourve absolutley no idea the impact they have on me and how much I treasure them! 
So, Thankyou!

Love Kylee xxx