old blog 6

When I get something new I take really great care of it. Say I get a new black dress. I hang it up immediately, iron it carefully before I wear it, make sure my napkin covers my lap when I eat and that I don't snag it on anything. But after I've worn it three or four times and someone puts a cigarette burn in it or I spill spaghetti sauce down my front, I tend to get more lax. I may dry clean it a few times, try to keep it in its oroginal form, but once it gets a rip or snag or stain, I start to get lazy in its care. I wad it and leave it on the floor, wipe my hands on it when I cook, or start wearing it for Sunday errands instead of Saturday nights.

Since my IV stint, my lungs have felt great. I actually laughed without coughing. I could not remember laughter without coughing until that moment.

I am trying to treat my recently cleaned lungs like a new black dress. I am increasing my vest time and using the HTS twice a day instead of once. I am ready to start exercising. I've begun suaing my advair again as well. My husband and I went out to hear music on Friday for his birthday but we left the bar because of the smoke, something I never really worried about before.

But already I am coughing up crap. I like to believe that I've just opened up some airways that haven't had a chance to breathe, so smothered in green were they, that they are finally expunging themselves. But in reality, I know that PA is a greedy ***** and is simply restaking its claim.

So, I am trying to remain vigilant. To not go the way of the black dress, caring less and less the more worn and used something gets. This is my body after all, irreplacable and such. But i feel so frustrated. I am trying to get it together and I'm meeting resistance from within: this time it is physical, not mental.

I am trying not to beat myself up for not coming to this place sooner, so that I might have headed off that PA five years ago when I first cultured it; i was five years younger, my lungs were five years in better shape. I fear a quick decline.

I haven't worried about my health declining, ever. I feel I think about it too much now, but i have to be realisitic. My body, like a black dress, will wear and tear and streatch and sag, but it is up to me to slow that process down - a process that we know is happening inside our bodies faster than in everyone elses.

My dad always warned me that one day I would wonder when it was he got so smart. We don't see eye to eye on a lot of stuff, Dad and me, but I will say that all those lectures I rolled my eyes through about caring for my health are knocking around in my head right now like a coupla cage fighters growling, "You should have listened, dumbass."

I'm so tired. So, so, very tired. I am waitng until 3 to do my fortaz and then I am taking a nap. This schedule has me all f##ed up: by the time I am done with meds, it's midnight and then I am up at 7 to start over. bah. Plus, don't forget little miss boobakins in there waking me a few times. I am the walking dead.

Speaking of. I really thought i was all settled on this IV thing - it didn't seem like a big deal to me. I mean, I have had moments with it: I still don't like it, I still don't want people to see my PICC, but overall, I understand why I am doing it. I eased a lot of the impact to my family by explaining that IVs are safer for breastfeeding, which is true, but they are also better killers of my bugs (PA and Staph), and inevitably, I must try to harm the intruders.

But overall, I just didn't feel like this was a huge deal. Maybe it's from coming to this site where at all times plenty of people are on IVS, so I've gained a sense of normalcy about the whole thing. But I realize that to everyone else this seems like a huge deal. And that's where I have trouble. Everyone is being so nice to me. I appreciate it, I really do, and I know I sound like a complete ingrate, but I almost don't want them to be nice as it feels a little akin to pity. And pity, for me, only fuels the denial fires.

I guess I have come to accept CF from the eyes of a CFer and in comparison to other Cfers. But to the outside world, seeing me attached to an IV pole is still a bit unsettling, despite my explanations of PFTs and susceptibilites. It seems when you undersnatd the science behind it instead of just the voodoo of western medicine (that's supposed to be an oxymoron, but it ain't) it makes perfect sense. But I just don't think anyone in my life is getting over the PICC and the pole. It's making this really hard. It's the reason my friend stopped by to bring me a movie and before i answered the door I ran and covered my site with a sock. It's the reason I haven't been answering the phone when people call. I'm avoiding their reactions.

My mind is 80% settled - why can't everyone else get on board?