If you have not read my journal yet today please go back and have a look at the previous entry, as this is the second update today due to change of plans and new info.... :) 

I got a call from Dr. Neff before...I feel soo sorry for him... He broke his leg on the weekend while rock climbing... Which in turn means my treatments will be postponed till either next week or the week after...

It is a bummer but also fully understandable -- I know God has it under control and his timing is perfect...

There is new developments in my journey with CRPS... Some which I may have already touched on and others Im not sure of but I will go over it so as to paint the picture of where things are at, at this time...

Recently I have started having problems with pain and discolouration appearing on my right hand, arm, leg and foot... Which is a bit scary as it shows the disease is still trying to progress... As well as that I have been having these black out spells every so often which Dr. Neff believes is a problem with low blood sugars... As well as loosing control of my muscles in legs in arms which may be both CRPS and low sugars... 

But the one that does bother me is its looking like the CRPS may be moving into my bodies core temperature system (is that what you call it?? The place in your body that controls your temp?)  I have talked with my Specialist today about it and we are pretty keen to try and get on top of things in regard to this as soon as we can... Ann Stegal made a comment in my guestbook that she was offered injections for this... IF ANY OF YOU HAVE ANY KNOWLEDGE OR EXPERIENCE WITH THIS PLEASE COULD YOU CONTACT ME?! Do you know what the medicine is called? Do you know of anybody that has had issues with their core temerature... Where one minute your shivering freezing and the next your covered in sweat where its dripping on your body and soaked all your clothes with temp, like after a 3 hour hardcore run?? Next your back to normal then freezing cold again... And nothing has changed... lol

It scares me the CRPS is moving into different parts of my body and internal organs like my eyes and bladder, my entire left side and now starting on my right...

I know, that I know, I can trust my God! I know, that I know, that He has my life in His hands... But its certainly not fun walking through this all... And certainly not easy!

Mum says Ive been a bit moody lately, I was talking with my friend Alicia last night saying its actually been harder since I've been out of hospital then it was before I went in, yet the pain was worse before I went in... Ive not 100% put my finger on why.. (I'm happy to hear any ideas on this issue, lol) I think maybe because Im realising its not as easy as we had hoped... Its a lot longer term than I had in mind... And I guess there are many emotions involved... Even subconcious ones... Its hard coming to terms with being stuck at home and 'occassionally' being able to go out, then paying the price in pain from a girl who was working 30 hours a week, kickboxing every week, pilates, swimming, out in town, having fun with my sister and friends, road tripping... You know.. The break down in your socail networks... If I took myself outside myself I would think itd be damn hard... But I guess being in the situation I expect more of myself haahaha.... Over achiever... lol yup.. thats me! haha... (they're my thoughts on the subject anyways)

Dr. Neff said he would be more worried if I wasnt a bit moody (only a tiny bit, lol, jokes :P) as with everything thats going on and all Im dealing with I wouldnt be normal if I wasnt... Plus Im coming off some of my medications as they werent doing much... So it all adds and contributes to everything doesnt it??

I still cant deny Gods goodness though, His Grace, Love, and Favour towards me in it all... Watching Him move and work in ways unbeknown to me... See things turn out how they should when it was all turning to custard and putting incredible people around me... Its looking for every little tiny piece of goodness in this horrible situation that I can, so I stay focused on the right stuff instead of letting myself getting caught up in everything thats going wrong, but also still seeing things as they are and not putting my head in the sand... (another balance thing... The word I love to hate, but hate to love, haha)

I really just wanted this to be a realistic picture of where things are at, those of you who can, I thankyou in advance with joining me in prayer... Not that you would demand a miracle from God, but that you would ask, in it all, His will be done!

The good news in all of this is that I still am able to have blankets on my legs (miracle!)... For short times I can still use my walker in the house, short sitting, I can shower and shave (painfully, but just), and I can use a wheelchair when I go out! I have an incredible Mother who helps me with things like getting in and out of shower, dressing, serving my dinner, doing my medications (now thats a big task!) and so forth, so that is huge! Plus Dad helps me get up and down and with my food when mum isnt here too... I have amazing family and friends and a good team of professionals around me...

Ill leave it there for today but if there are any more changes Ill be sure to update again! Thanks for following my journey and helping make this road a nicer/better one! 

With much love, Kylee xxx