Monday, March 15, 2010

1000 and brick walls

First off I want to say Thank you to all who read my blog! And to those who comment, the comments really do mean a lot to me and I read every single one of them even if i still have not yet learned to reply to them. (Apart from you silly people who leave anonymous comments because I sit and wonder all night long who you are :-p)

But yes 5 months and 48 posts later, I have hit a 1000 views! so yay Thank you!

Now onto the boring stuff so feel free to close the window at this point. :p

How is it only 9:15 pm. It feels like about 12:30am. And im blogging before midnight, thats a surprise for me.
However, what isnt a surprise is that I am about to embark on yet another one of those self centered rants that I am getting good at producing. blah.

I feel like I have hit a brick wall and have no where to go right now.
You see, I have always jumped feet first from one thing to the next. As soon as I got out of hospital after my transplant and I was able to walk far enough my aim was to get back to college, which I did part time, and worked up to full time with the aim of going to uni for nursing. Got into uni and loved it, worked to get my driving license, had to leave nursing and aimed to go back to college. Got back to college and had to leave due to psych crap. Aimed to get help for it and get back to college. Got back to college and aimed to complete the course. Ended up in hospital and had to drop it.

Then I lived for a while in and out hospital. Jumping from one emergency to the next, in and out of ICU, back and forwards to theatre. Drugged up and drama'ed up. Hospital kind of gets like that. You live from one drama to the next and the time in between in a safe little bubble where you dont have to think for yourself, you dont cook, you dont clean and you dont worry about things like nebs and medication. Where if you feel sick you press a button and you get a nic jab and the sickness goes. Where if you feel ill you mention it and 5 minutes later have a team of doctors there to puzzle out why and the best action to take. But I have been out for about 6 weeks now and the appointments are getting less and things are settling down.

But since then, I just feel like I am stuck. I dont know what to aim for. I dont know what is happening. I dont know if my breathing is going to get better, I dont know if I am going to get my voice back. I dont know what I will be doing in September so I cant plan for college.

I saw my surgeon today. I dont think he knows what to do with me.
I didnt think my mum really noticed my breathing much anymore as shes always oh get on with it and live around it and such, which I do try to do. But when the surgeon asked me how the breathing was going and I didnt want to disappoint him and just kind of shrugged mum started going on about how I sounded like a steam engine and how much stairs kill me and such. He still thinks that it will settle and get better as I recover more. I should trust him, hes the one with knowledge and experience. I just dont see how it can get better. The tube means that I have a nearly normal airway. If I am breathless with that, how can it get better?

I asked him if it is defo my airway making me this way and not a result of any previous surgery such as my thoracotomy. He said he dosnt think its anything from the past as he thinks my lung functions where pretty normal before he started on my airway. But truthfully, if I remember rightly, my last lot of lung functions where ran about 4ish years ago, before I started really struggling, which is at least 2 bouts of pneumonia and at least 7 chest infections ago.

My blocking the tubes so frequently and the top covering over and bleeding is again a result of my body not liking forgiene objects. This is what he battled all the time with the stent and why it didnt succeed. It will probably always be there. and the crap on my chest that I am constantly clearing, well that may settle down in time or it may not. urgh.

On a more positive note, he referred me to the surgeon I requested about a month ago so I should be hearing something about that soon *fingers crossed* he is however going to send me a copy of the refferal (is it wrong that I am excited to read this? It will contains numbers and facts and will hopefully tell me a little more) but he is sending me that so that I can chase it up further if I wish to and see if I can hurry it along.

I expected him to take the whole stance of, well there is no rush and its not worth rushing into things, but he seemed the opposite, more so we need to get things sorted sooner rather than later. Which is true as I dont feel I can move on until I know one way or the other. I am kind of pinning everything on this referral. I know if they say no, then its time to accept my fate and begin to learn to live with things the way they are, but I am pretty stubborn and until I am told for definte that its a no go area then I will keep wondering.

My voice is getting worse. Its noticeably quieter, but its the bits that no one else sees that is becoming the problem. The energy it takes to force voice out, the dizziness from not getting rid of CO2 while I am talking, the banging headaches that follow a conversation and the nausea that follows them.

I need this referral to come through and I need for it to be a success.
This is the only thing I can think to aim for right now. To try and chase up the doctors and surgeons and get an appointment. But of course that comes with its own problems. Putting so much on something that might not even be possible? Well if thats not setting myself up for a fall then I dont know what is.

Anyway, enough ramble.

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