Well....

This is my first journal update --- the main reason I created this page was because I have people asking alot whats going on and I thought if there was somewhere people could check in -- and leave comments :)

Also, for the fact its always good to have people praying!

See, things aren't doing well for me at the moment - at all - the reality is things seem to be gettong worse -- i have hours where pain isn;t reali bad but thats where it feels distant from -- like not my own... and on top of pain im dealing with, chronic nausea, diziness, black  eyes when I stand, other body issues and the stark reality that Im stuck in bed whether I like it or not....

I look out some days and would give anything to be able to go out... and I know it will come one day but its hard in the mean time... the isolation is huge, not being able to work... many ppl have called me lucky, but i dont think they have a clue what theyre talking about -- if they knew the hell I endured daily they wouldnt call it 'fun'...

I've been doing really well, but i am having a huge time/struggle adjusing to the last blow .. which Im sure many can understand ... the CRPS spreading to my left arm.... thats my left leg, hip, lower back, arm, and shoulder ... I can't do any of the things I was doing to keep myself busy.,, books, cross stich.. haha even the little thinhgs like squezing paste onto my tooth brush and squezing my zits hahaha...

Now this isnt a depressing update and its not going to be a depressing journal --- but some things are just the way it is too -- and they are just a few of the hard adjustments and blows im coming to terms with...

I was ment to have spinal injections over a month ago but I have had persistant infections which has prevented me from being able to get them done... It was only last week I let the people pn my treatment team know about the fact I thought it had spread... So I am still waiting to hear back from them -- they were quite shocked that it had spread -- as were we! They werent expecting it to! Infact having CRPS spread it the fear of most people I would think -- But I am hoping it will mean a hurry along in my trearment , and getting the funding and approval I need to get it!!

On Friday all my equipment turned up for my bed -- except my bed couldnt use it! I was waiting on my new bed to arrive but they said it wouldnt be here til tuesday! I was keen to get my new bed and get the equipment installed -- well what do you know -- and 12:40 on Friday I had a guy ring me on my phone to say he had my bed and would be here in 20mins -- i was estatic!! I was blessed to have my mate down who was able to help -- infact he did everything for it and set up ALL the equipment in my bed and everything! He even cleaned my room!! Was a total blessing and a God thing -- I was blessed to have Him down and we had a good time! I can now proudly say that my new bed is fantastic and the equipment works really well!  except for the walker -- as i cant use it because the CRPS spread to my hand -- though Im hoping when the Ketamine works I'll be able to use it again when Im relearning to walk and need the extra stability!

Ive been very blessed with my treatment team! They are amazing and stand behind me 110%

Well... thats me tonight... Welcome to my journal! I hope that you will find it useful and I hope you wil leave me lots of comments!!

Kylee xxx