It has been a long time.

When I am doing, moving, changing a lot, I don’t write a lot. Writing is reflective, an assembly of my thoughts.

How have I been lately is crap, literally crap. The funny thing is I don’t usually give into the crap feeling state; I hustle and charge on through. But, honest – crap.

This crap in my lungs is really making me mad. I tried a drug to help me, but only dried out my lungs and created an infection. It was supposed to replace my mucomyst that I have been using my ENTIRE life, but it has been unavailable this last year to year and half and I believe has really lead to my degradation of my lungs. The real name for the med is Acetylcysteine – try saying that!

A series of events has lead to my troubles, yes – but not having it has been crappy. Finally, my miracle the drug, mucymyst, is in production (or for at least this moment!); I got it 2 days ago and I am really in love with this awful, smelly tasting stuff. This stuff works. It thins my mucous that my lungs seem to produce on a daily basis. The plant got shut down for unknown reasons, unknown to me anyway.

This stuff has kept me alive and I can’t believe I have it again. The pharmacy filled the entire prescription which is a good sign it is in real production again. For a while I was getting a couple bottles here and there.

Let me give you a breakdown on what’s going on inside my lungs: in the simplest terms I have excess salt on the outside of certain organs; i.e. lungs, digestive tract, in my pancreas, ducts in my liver, and my skin. I have too much water inside and not enough on the outside to make it balance. Compare the salt to snow, and when snow falls, things get stuck in it – especially the wet, sticky stuff. That is how the bacteria gets stuck. Then, my cilia that is supposed sweep my bacteria out is just stuck in the salt as well. What a crappy disease. I don’t know how I function at all.

My little alveolus in my lungs are suffocating from this damn mucous.

I have been coughing, hacking, coughing ridiculously since my lungs are trying to clear out this crap. I am coughing so hard it is to the point that I am gagging. My body is in spasm, and my muscles are working crazily to get rid of whatever isn’t supposed to be in it. Then, I sweat; my shirt is sopping wet from coughing, literally. I am not writing this to complain, because that isn’t me. But – this is stupid. Nonsense. I can’t stand nonsense.

This disease is manageable a good part of the time, but when one thing gets thrown off it is a tornado spinning and throwing everything around inside.

In summary:

1. CF stinks.
2. Mucous is crap.
3. This is nonsense.
4. I pray that I can continue to get my mucymyst.
5. I pray this lung infection gets cleared up completely – I think it will; but I won’t know for sure until more time passes.

I was fine until I tried that damn drug. I did it under my own will and unfortunately things back fired.

Yesterday I said to Sheila and I know this seems bad, but I would rather die than live with this disease – when it is specifically creating horrible havoc in my body. When it is like this, when it is making me puke from trying to cough up crap – I mean really! I am not suicidal, but what I am saying is that this is crap. I have no room for crap in my life and yet my lungs produce it daily!

I say to myself, there has to be a better way. If the possible drug that comes out, yes. Keeping mucymyst in my life, as I wish I could buy a life supply of it.

I am one of the most stubborn people, and my body, intrinsically, is just as stubborn as it works to breathe life into my body. And that’s it, I want life. I always have, otherwise I wouldn’t be doing hour- long treatments/2x daily currently to get rid of this stuff, working my ass off, wanting to punch a wall, at least mentally. Because “You” are messing with the wrong person! I am not mad at CF, it isn’t like that. My body was born with a compromised system, and it is working so hard to carrying on.

I would like relief. I am getting some with my medications, but true relief. I mean stop – just stop the nonsense. I would like many years with Sheila. My aim is 20 years and I hope to make some money for she doesn’t have to worry. I would like more, but my aim is 20 years.