Today has been a good day! 

I enjoy any day that I get a visitor, phone call, letter or personal email...  This morning I had a friend come over and enjoy a few hours chatting and catching up then this afternoon I had my pain physcologist come to visit... She does home visits with me now as I can not get into town to her office without much difficulty -- infact if she hadnt offered to come to the house then I most likely wouldnt be able to go... It was really good chatting, we talked about many things and the difficulities that go along with being in constant pain and bound 99% of the day on my back... Sleep is also a big one... I really dont sleep much at night... Most nights its 2 or 3am before I get to sleep and Im awake again by 5am then go back to sleep from something like 6 til 7am.. Ive also had to have the bed cradles put back on due to the pain and the fact it is still spreading and getting worse... 

I can no longer get up anymore and need  a lot of help from Mum -- its a pretty funny picture with my leg how it bounces to get up... Much of the time its all Mums weight holding me up as my leg crumbles underneath me haha... When I do stand up my foot turns black... I really need this next hit of Ketamine ASAP so Im praying I get a call tonight to say we need to be in Rotorua at a certain time tmorrow and I can put off the dietician appointment I have... That would be cool... I just fear though that Im going to have to wait yet another week... and that thought does scare me somewhat... But then that in turn comes back to trusting God...  Like the following quote explains:

"What you need to do, is to put your will over completely into the hands of your Lord, surrendering to Him the entire control of it. Say, "Yes, Lord, YES!" to everything, and trust Him to work in you to will, as to bring your whole wishes and affections into conformity with His own sweet, and lovable, and most lovely will. It is wonderful what miracles God works in wills that are utterly surrendered to Him. He turns hard things into easy, and bitter things into sweet. It is not that He puts easy things in the place of the hard, but He actually changes the hard thing into an easy one." (Hannah Whitall Smith)
I had a two lovely friends visit me this afternoon and one of them had even made us dinner and cookies... She did a good job to cause it was all sooo yummy! Nic (my other friend) is tutoring my sister with her school work as Lauren is really wanting to get ahead in her work! She is doing sooo well with her school work! She got an awesome school report -- I was sooo proud of her!! 

I was meant to be doing the half marathon this year but was gutted as I couldnt (obviously, lol) but when a friend was talking about doing it with another friend the other day they then suggested that they do it with me and push me in the wheelchair -- We are going to get sponsorship and raise a little bit of money... So im really excited about doing it!! Next year its my goal to be able to walk it with my specialist! Neat goal huh? :)

Well, I will be sure to let you know if I get a call or email to let me know whats happening tomorrow... If anything happens, lol.

In the meantime, for those that would like to read it I found a letter on chronic pain -- its actually really good... Worth a good read and brings understanding to a degree... Let me know what you think if youd like... Love Kylee xxx


CHRONIC PAIN LETTER...
Having chronic pain means many changes and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know many are actually misinformed.
In the spirit of informing those who wish to understand…..
These are the things that I would like you to understand about me before you judge me...Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, my family, my friends, and most of the time – I’d still like to hear you talk about yours, too. Please understand the difference between happy and healthy. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, oh, you’re sounding better! Or "But you look so healthy!” I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome. Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralysed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain. (Please repeat the above paragraph substituting, sitting, walking, thinking, concentrating, being sociable and so on ... it applies to everything. That’s what chronic pain does to you.)
Please understand that chronic pain is variable. It’s quite possible (for many, its common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, but you did it before!
Or, “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do. Please understand that getting out and doing things does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of “it” may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don’t you know that I would? 
I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder...”. Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. 
Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression. Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it cant be put off or forgotten just because I’m somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone. 
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true.
In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. 
There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor. 
If I seem touchy, it is probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.
Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general. 
In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you to help me with the shopping, cooking or cleaning.
I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able. 
I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.             (AUTHOR UNKNOWN)