Saturday, March 09, 2013


I am writing this from the comfort of my own bed.
Yay im home.

So do I feel much differnt?
Its hard to explain.
I am coughing once again, and as odd as it sounds, it feels so good to cough, rather than everything just being stuck.
Although I was in hospital, I did spend a lot of time at home. Once all my treatments where out the way, I would come home for a couple of hours and go back in for my evening treatments. I think this is why I have been surprised since I have come home.

Being home, I am exhausted. More than that, everything I do exhausts me. Last night, I was in bed 9, yet this morning, I just didnt have the energy to sit up. Now my mind is playing with me. It says, well you have just had IVs, this is your best. But, in truth, my body has had over 2 weeks of rest. Right now, I think that I am once again growing scar tissue. This means that I have had 2 weeks of growth that I am not aware of in my everyday life. But now, now I am truly feeling it. I get so out of breath doing the simplest of things. And tonight, I was sat on the couch and all I could hear was my breathing. It was super loud and so I was very conscious of it. It cant be right to feel so breathless whilst sitting still.

Luckily I have clinic next week. So I am hoping my dr has a look down whilst I am there. Then perhaps a plan can be formed. Until then, things are very up unpredicatable.

The thing is, I know I have said this before, but I am too busy to be sick right now. We are still rebuilding things like the kitchen. And my Dad needs surgery, hopfully in the next couple of months. I want to be busy. I want to be helping. And yet my body dosnt want to let me. It is frustrating.

Mum and Dad are arguing a lot. It puts me on edge. But its more so upsetting. My dad has always been this wise and wonderful man. So clever and logical. Yet I see him now and simple things, seem to go right past him. Everything needs to be explained or put into steps. I worry about him. But more than that, I know it frustrates him and it frustrates mum. Rather than understand, Mum shouts at him and has no patience. Between the two of them, its very tense. My parents love each other, they have been together for 40+ years and yet I look at them and I worry about what will become of them.

There isnt anyone to watch out for them outside of me. It is sad.

I learnt a bit more truth whilst I was in hosptial too. I met with a friend and we had a good chat. Turns out she has had an appointment with the proferssor who is in charge of all the trachea research. I knew she was meeting him, but it is a long time since I last spoke to him. So, the news is that there is a new procedure in development that could help people like us. But you guessed it, its going to be a while in development. He told her she was an ideal candidate for the research in it. And then they discussed things like psych evaluation and all the other steps that are needed to be a candidate.

And that is when they penny dropped for me so to speak. That conversation is one that I have be preparing for for 5 years. It is one of those things that has kept me from being as destructive as I have wanted to be at times. And yet the conversation has never come. Because as much as I need experimental surgery, I am not an ideal candidate. I have to many other risk factors. They type of stuff that the proferssor is doing, is the type of stuff that needs to have as few risk factors as possible. And so, no matter what I need, until the research is completed and it is given a big tick as being totally safe, it will not be performed on me.

I have known this for a while, in the back of my mind, but now it is out there.

I dont know, I love that my surgeon does everything that he can for me. But the options are getting less and less for what he can do. And as they get less, I begin to lose my fight. I feel I am backed into a corner. I fought hard, for a long time. I have looked into all kinds. Being treated abroad, differnt types of treatment, buying my way into somewhere. But I am out of options and out of fight to keep looking. I need to be here and yet everything in the universe seems to be against me.

I sound bitter on this. I am not, not really. I have been dealt a crap hand lately, but crap hands can still win. I am not sad, I have achieved a lot, but I am also ready, should the time come. Thats not to say I am waiting to die. No I am waiting to live, but if that is not possible, then I can make peace with the world.

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