Its exciting knowing the day is coming closer -- I hope that it isnt bumped back when it coomes to the day... thatd suck!

Its so exciting reading new messages on my wall and seeing the counter go up -- and humbles me...

Mum was trying to get photos of my legs and feet today when she had to move me but the camera had run out of battery... So maybe tomorrow... Mum and I got a bit more sleep las night ... The medication they have put me on to get me through till Monday knocks me out even with the pain soo makes for an easier night,... They told me eat what I can when I can wotever I feel like so this morning I had scrambled eggs on toast for the first time in quite a while...

We had some friends over for lunch yesterday and it was really awesome cause everyone came upstairs to eat lunch in my room! It was good catching up with them.... I think everyone slept afterwards cause of the late night before... Infact, Dad got up at 6am to help get my sister off to school and do the early morning jobs so Mum could sleep in for a little while longer as she was in with me and by 9am when all the jobs were done he went back to sleep and slept right through till 12noon - he was tired - them slept in the arvo again, though alot of that is his head injury -- it makes him tire easily...

Im trying not to think about next week as at the moment I know such few details -- so Im waiting until I hear more info from Dr. Neff --- but it is quite a hard task... There are so many things I am looking forward to, and hoping I will be able to do again,  like sitting, standing my myself, cross stich, being able to put my own make up on, getting dressed in proper clothes again, - and on my own!, wearing pants or shorts - which i havent done in 5 months, reading my books, going out for coffee, or to church, sitting at the dinner table with everyone, going to the movies, shopping, even going outside and enjoying the sun!! walking, --- yea --- but that might be a little while off as my left leg is a bit too weak at this stage.... But so many things...

I know its going to be a bumpy road... i dont actually think I really know whats up ahead of me, but no one ever does really now do they...  Sure its going to take a long time and alot of hard work but I cant wait to get back into all my swimming and stuff... They told me I cant do kickboxing again but its still my goal to run a marathon eventually!!

I really pray that the Ketamine works - not just while im on it or for a week or a month but my ultimate goal would be it worked forever -- but even 6 - 12months would be awesome... I have heard people can go into permenant remission -- now thatd be awesome...

I've got hope again - not that I didnt have any, but it was runniing low, when you have no dates, mothing to set your sites on and nothing to aim for when all thats happening is things are getting worse, I guess its understandable.... Im trusting God, I got something to look forward to now though... Something to aim for and look forward to!

I'll continue to smile though the good and bad days, but ultimately trust God that he has it in his hands and is totlly under control, with my life now, next week next year, and in the many years to come... I cant wait to see where he leads me in the many years to come --- What a neat thought!

oooooooooooohhhhhhhhhhhhhhhhhhhhhhhhhhh BOY!!

Do I have some news for you!! What a blessing this site is - come at such amazing timing!! Those prayers are working - keep em comin' lol!!

Last night was an extreamly hard night pain wise but eased in the fact I was given a window of hope - more than I could think of!! God works in incredible ways -- I wont hold out on you any longer --- heres the story in a nut shell and my big prayer request....

Mum slept in my room last night with me --- i think we got bout 4 hours sleep in the end --- mum had to move me a couple of times and each time i screamed and my poor dad came running so we are a very tired household today --- but at 10.30pm the blessed email from my specialist came through!!!

Well basically he has worked for hours upon hours getting things sorted out for me ... in many meetings, phone calls and emails.... he said he used all his favours and has pretty much pulled off the impossible! I was blown away --- i have the most incredible treatment team (of 9 different specilised people) who are fighting to get me well and going into bat for me 110%

I will be admitted to Rotorua Hospital on Monday 6th of April for a heavy Ketamine Infusion. He will need to be by my bedside and guiding alot of my treatment as its still very much experimental and everyone reacts differently to the medication... there are side effects and risks but the outcome will be far greater -- i dont know how long I will be in hospital for at this stage -- i guess alot of it to depends on treatment but will be a minimum of 5 days at the least...

The amazing part is it will all be funded and paid for -- through the public health system -- which is nearly an imposible feat he overcame -- as I have jumped any waiting list there may have been and all red tape!! God must have really opened up the doors... If we had had to pay it would have been thousands upon thousands -- very expensive!! I just have to sit back and go wow, the whole thing blows me away!!

We need prayer that there is a bed available for me come Monday --- Rotorua has an ongoing bed crisis at the moment so that is the big catch ---- we need warfare prayer that come Monday -- that bed is mine!!!

I know God is in this -- i know he will path the way and im trusting him with everything I got but the more prayer the better!

It means so much to me to have you all following me, praying for me and encouraging me.... I wonder if youll ever know the courage and strength it gives me to be determined to stand up and fight!  This wont beat me, I wont let it.... Its spread to my chest area now too so Monday wont come fast enough, lol.

They will take me over via streacher and ambulance... every movement is painful so Im praying for a safe and as low pain as possible trip!

In the mean time -- apart from the temp increase in medication there is nothing more they can do - and Monday is the earliest treatment date. Im to have no needle work without his approval as any work done could cause the CRPS to spread even more -- if i need to go to hospital in the mean time it will be through an emergency admission into Taupo Hospital for nurse work, as there is nothing more he can give me till Monday --- but Mums pretty determined to keep me at home -- Im pretty determined to stay... Besides, Mums a great nurse, lol, and lets face it -- my room looks half like a hospital room as it is anyways, lol haha.

So thats the plan at this stage... its really exciting, I can feel Gods hand guiding everything in such an incredible manner!! Come on, I mean, GOD IS SOOOO GOOD!

Ok, Before I go for todays update, I want to share an incredible story with you about his faithfulness... A few weeks ago my friend Nic came to visit and we were chatting... Somehow the idea evolved about having a girls night at my place, you know, social contact, have a bit of fun (i dont get much of that these days, lol)... So we planned it --- She invited the homegroup girls and I invited some people on my list... it was set! A desert night with nails, pamper stuff and a DVD... The night came and all week I had been really sick with chronic nausea and alot of pain... It was only a few hours til everyone was to arrive and there was no way i was going to be able to eat a thing.. I hadnt been hardly able to look at food all day... So I had been praying I would be well the night of the party ---- Well you know what?? This is the cool part... About half an hour before people started arriving the nausea and pain started to lift --- and as people were walking in it was still lifting --- you wana know what??I had the best night!! We laughed and giggled and chatted and ate desert -- and i was well enough to eat desert -- and my frind Nic painted my nails -- even on my bad hand that no one can normally touch --- and after they all left the nausea slowly crept back along with alot of pain --- but you wana know what?? God came through for me and gave me a really great night --- sure i couldnt get out of bed and we had to have the night in my room -- but that didnt bother anyone -- didnt bother me -- but it sure gave me the boost I needed! Thats my awesome story! I still smile at it! GOD IS GOOD!

You know, Im not super spiritual, or super strong or anything like that -- Im no different to anyone else. All Im doing is doing it scared, and its flippin hard!!  Mum and I together - and Dad-- holding into God and his promises with everything I have! I dont know what the furture holds, I dont know what tomorrow holds... But I do know if I got God that he has a purpose in everything -- and he works everything for good if we give the situation over to Him! And Ive given it all over to Him else I woulda been a mess a long time ago... Are you familiar with the footprints poem?? "When there was only one set of footprints thats when God was carrying you" - Thats me !!  :)

Waiting on the specialists

Well, my specialist was unable to contact me back --- i guess he is in surgery as all his phones were on answerphone...

Which means I am home --- today the pain has been horrific --- and its only got worse as the day has gone on... We emailed Dr. Neff so I hope he gets them soon... I am shocked how quickly the disease has suddenly taken off and how quickly my body had deterioated.

It scares me a lot the thought I have a minimum of 15 hours to get though in the kind of pain that I am in -- I can only begin to describe it as horrific....

The docotor is trying to get me nurses in so that they can take over things with me... its so hard for mum -- shes up with me many nights and has been having to carry me to the bathroom basically which causes huge pain for me and its not easy for Mum either! Because it spread to my arm and shoulder I can no longer use my crutches or walker... Infact I can not even physically move my fingers on my left hand...

My Doctor told Mum things have gone out of his league and ability to help me.... So we are relying and waiting for news from Dr. Neff -- hes a very good Doctor -- He told my doctor he was getting a plan put in place, last Friday, but Dr. Giles has no idea what that plan is going to look like...and so far no one has heard from Him.

This is a true story of waiting and trustingg Gods timing and falling into to His arms -- as at this stage thats all I have --- Gosh, I dont know how I would do thid journey without God -- or my time in Mercy where I learnt the valuable tools that have kept me going. And of course Im blessed with the most amazing and supporting parents, for if I did not have their help, support and care I would have spent these last months in hospital.

This will be a very long night but I'll do my best and we will get through! We always do!!

Needing Prayer!

This is a quick update ---- i really do need prayer.

The CRPS  spread to my arm last week but each day it is getting worse along with the pain, which is also still spreading daily ... its 12.36 pm Monday and i havent really been able to move all day so far --- the entire left side is very sore indeed.... buring and needles .... and dead -- like it doesnt belong to me...

Ive also had mild grade fevers all morning.... which certainly doesnt help things.... im writing this from my bed table.

Today is a very hard day indeed -- My physio popped roung this morning and wasnt happy with the pain I was in and how much worse it has become...

Shes going back to ring my specialists and try and get something done about it.... Up until now Mums looked after me and done everything but its looking like theyre finally gping to have to admit me.... mayb i will finally get some pain relief but it is certainly more comfortable at home --- Ill keep you updated - or Mum will....

I really need prayers that they will find the right meds, help with the nausea and the dizziness and headaches, chills brought on by the fevers.... and of course the pain ans swelling!

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