Today has been a rough one -- My skin has been burning like its on fire -- seems it now includes all four limbs, my back and face (YUCK)... Been really hard but Ill get through!!
Ive been in contat with my specialist -- sadly I will not be having Ketamine treatment tomorrow but he has been in contact with a lot of important people and is looking into an admission to Hamilton hospital (2hours away) to be evaluated by their team and if they can work with me great! Otherwise the plan will be to go to either Auckland hospital (3.5 hours away) or Christhurch hospital (10+ hours away) for treatment...
I found it intresing to read what responses my specialist recieved from other specialists in NZ and where that leaves my case... As such its not straight forward... Here is what Stephan let me know... "From a NZ perspective most teams advocate a strong physiotherapy and psychology input as the key to success with medications only playing a minor role. In your case however we are certainly facing a very rapidly spreading CRPS of the nastiest nature and as such your case is just as “way out there” as the higher-dose Ketamine treatments L. "
Its a bit confusing at the moment but its just walking it through step at a time... I trust Stephan immensley and he is working really hard on my case... I have a new physio who will be joining my treatment team, I look forward to getting on board with her... We are also looking at involving my old dietician!!
Im so frustrated right now I could "kick the cat" (its a saying), though one leg is stuck in a bent position and would hurt to muh and the other leg I would fall over... hahaha... So I think the cat is perfectly safe, haha -- not that I would ever kick my darling precious Sox (my cat)... (Mum told me "kick the cat" is a saying for being totally frustrated, haha)
Today my OT came round to put new bed raisers on my bed downstairs as it is becoming evident I will be down here for a while... So with my bed being raised up it now means I will be able to use my prized 'monkey bar' and bed table (they couldnt fit under my bed before...) Its nice having my bed raised up... I like it! It also means its eaiser to get in and out of!
So I dont know what this week will hold or what will happen over the next few weeks, when it might all take place but I will of course keep you updated! One request I ask of you is that you put in some prayers for the up and coming trip to hamilton for the assessnment of my teeth on Monday which is a pre op before my surgery tentitively booked for the Thursday after that (28th)... Prayer for 2 things... One that I will handle the trip there and back as well as the assessment... I also plan to have lunch with my beautiful friend Sharee... And two that the money will all work out... Its expensive... Any surgery is... So just that God would guide me with the best way to go about it!
The support I get from this site is incredible! Im soo blessed to have this outlet and it makes it so much eaiser to keep everyone updated... The comments mean the world to me so please even drop me a quick note to let me know your following my site -- I love meeting new people via this site and hearing from my good and faithful friends -- I always get a smile reading the guestbook! Love Kylee xxx
Heres something well worth some thought... And so very true!
YESTERDAY, TODAY, TOMORROW
There are two days in every week about which we should not worry. Two days which should be kept free from fear and apprehension.
One of these days is yesterday with its mistakes and cares,
Its faults and blunders, Its aches and pains.
Yesterday has passed forever beyond our control.
All the money in the world cannot bring back yesterday.
We cannot undo a single act we performed.
We cannot erase a single word we said. Yesterday is gone.
Ive been in contat with my specialist -- sadly I will not be having Ketamine treatment tomorrow but he has been in contact with a lot of important people and is looking into an admission to Hamilton hospital (2hours away) to be evaluated by their team and if they can work with me great! Otherwise the plan will be to go to either Auckland hospital (3.5 hours away) or Christhurch hospital (10+ hours away) for treatment...
I found it intresing to read what responses my specialist recieved from other specialists in NZ and where that leaves my case... As such its not straight forward... Here is what Stephan let me know... "From a NZ perspective most teams advocate a strong physiotherapy and psychology input as the key to success with medications only playing a minor role. In your case however we are certainly facing a very rapidly spreading CRPS of the nastiest nature and as such your case is just as “way out there” as the higher-dose Ketamine treatments L. "
Its a bit confusing at the moment but its just walking it through step at a time... I trust Stephan immensley and he is working really hard on my case... I have a new physio who will be joining my treatment team, I look forward to getting on board with her... We are also looking at involving my old dietician!!
Im so frustrated right now I could "kick the cat" (its a saying), though one leg is stuck in a bent position and would hurt to muh and the other leg I would fall over... hahaha... So I think the cat is perfectly safe, haha -- not that I would ever kick my darling precious Sox (my cat)... (Mum told me "kick the cat" is a saying for being totally frustrated, haha)
Today my OT came round to put new bed raisers on my bed downstairs as it is becoming evident I will be down here for a while... So with my bed being raised up it now means I will be able to use my prized 'monkey bar' and bed table (they couldnt fit under my bed before...) Its nice having my bed raised up... I like it! It also means its eaiser to get in and out of!
So I dont know what this week will hold or what will happen over the next few weeks, when it might all take place but I will of course keep you updated! One request I ask of you is that you put in some prayers for the up and coming trip to hamilton for the assessnment of my teeth on Monday which is a pre op before my surgery tentitively booked for the Thursday after that (28th)... Prayer for 2 things... One that I will handle the trip there and back as well as the assessment... I also plan to have lunch with my beautiful friend Sharee... And two that the money will all work out... Its expensive... Any surgery is... So just that God would guide me with the best way to go about it!
The support I get from this site is incredible! Im soo blessed to have this outlet and it makes it so much eaiser to keep everyone updated... The comments mean the world to me so please even drop me a quick note to let me know your following my site -- I love meeting new people via this site and hearing from my good and faithful friends -- I always get a smile reading the guestbook! Love Kylee xxx
Heres something well worth some thought... And so very true!
YESTERDAY, TODAY, TOMORROW
There are two days in every week about which we should not worry. Two days which should be kept free from fear and apprehension.
One of these days is yesterday with its mistakes and cares,
Its faults and blunders, Its aches and pains.
Yesterday has passed forever beyond our control.
All the money in the world cannot bring back yesterday.
We cannot undo a single act we performed.
We cannot erase a single word we said. Yesterday is gone.
The other day we should not worry about is tomorrow.
With its possible adversities, Its burdens,
Its large promise and poor performance.
Tomorrow is also beyond our immediate control.
Tomorrow's Sun will rise, either in splendor or behind a mask of clouds, but it will rise.
Until it does, we have no stake in tomorrow, for it is yet unborn.
This just leaves only one day . . . Today.
Any person can fight the battles of just one day.
It is only when you and I add the burdens of those two awful eternity's - yesterday and tomorrow that we break down.
It is not the experience of today that drives people mad.
It is the remorse or bitterness for something which happened yesterday and the dread of what tomorrow may bring.Let us therefore live but one day at a time.~ Author Unknown ~
With its possible adversities, Its burdens,
Its large promise and poor performance.
Tomorrow is also beyond our immediate control.
Tomorrow's Sun will rise, either in splendor or behind a mask of clouds, but it will rise.
Until it does, we have no stake in tomorrow, for it is yet unborn.
This just leaves only one day . . . Today.
Any person can fight the battles of just one day.
It is only when you and I add the burdens of those two awful eternity's - yesterday and tomorrow that we break down.
It is not the experience of today that drives people mad.
It is the remorse or bitterness for something which happened yesterday and the dread of what tomorrow may bring.Let us therefore live but one day at a time.~ Author Unknown ~
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