Monday, June 17, 2013


I still havnt published my long entry.
Yet, tonight I feel the need the write, more for me.

I have said for a long time that I dont panic, with breathlessness, in general. Over the last few years I have gotten used to it and if I am in hospital, I can cope with breathlessness on excretion. Even if that is only going to the bathroom.

The point, when it does begin to play on my mind, is when sitting still, I notice that my breathing is laboured. Generally, when sitting still most people dont notice there breathing at all, so when I notice I am noticing, I know it is a bad sign.

I have had this sign before. I know where it leads to. That is when I begin to panic. Because, I know that there isnt much further to slip. And that from this point, things can become crucial quickly.

Today is day 3 of IV steroids. I hadnt noticed much difference with them, until this afternoon when my dose was delayed. I found myself watching the clock, waiting for the relief that would come when I had my dose. Waiting for things to ease.

My breathing is getting worse despite the steroids, despite the nebs and the treatments. And that leaves me in a difficult place.

Deep down, I know that the only real option left at this point, for saftey is back to the trach. Its not an easy option, not an easy one by far. For it to go back in, is messy and will cause damage and who knows what else.

But without that option, if I were to say a firm no in writing, to a trach, then I dont think there would be long left to argue. In a way I can play things down. My oxygen levels are never really effected and so its easy for the doctors to not see the extent of my breathing issues.

But this wasnt how things were meant to be. Tomorrow is my nieces birthday. I need to be able to at least phone her and wish her well. I have no doubt that I will be able to do that. But there is more that is not yet in place. Certain insurances, making sure my parents will be ok and such. I need a few more months to put the nail in that coffin. Plus, right now, things could get messy. If I were to take real bad, and my parents are over 300 miles away, it could be disastrous.

These are the things going through my mind right now. I know I said I wouldnt go back to a trach and this isnt me botteling out. In fact, if it goes in, it makes things a lot harder again because it means that I have to go through the whole tube lengthing crap again.

I am tired tonight. My chest muscles ache as I am not able to protect my own airway of a night, meaning they have to work twice as hard to get the air in. I didnt sleep as much today as I would have pleased as I was stuck in CT most the morning. I am physically and emotionally drained. And I know I should not be making any real descisions.

But the doctors know the score. And my fate, has been sent in an email to my surgeon.

Tomorrow will bring more news.
Tomorrow is a new day with new prospects.

I exist inside this room.
But outside, the world looks so alive.
Tonight, the sunset over London looks like the sky is on fire.
The world is winding down for the night, but tomorrow is a new day.
Full of new ideas.

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