Yesterday I did my repeat PFT and it went up 5%! It actually went up 7%, but I am not sure if that is accurate. I am never sure if any of my PFTs are accurate, but that is the score, recorded in time.

I had made the decision that if my lung scores stayed the same or went down, combined with my new culture results, I would let MN make the decision to go in-house or not. I was leaning to be admitted because I can’t really mess around at my age as I need to keep my lung scores stable. The wheels were turning and I was already planning when I would go in, how long I would be out, so forth.

I am very stubborn so it is hard for me to say, “I’m throwing in the towel.” I have to think realistically and I don’t have the luxury to do be too stubborn or just plain stupid. Stupid I am telling you.

I hear Mary Jo, my NP that passed a few years ago, telling me when I was 14 or 15 . . . “You are going to get yourself into trouble one day, Tessa.” She was almost clenching her mouth, dead-set focused on my eyes with her hands on her hips, and looking fierce even with her 100lb frame.

So – what I have done: everything I used to do once/day, I do twice/day, and what I used to do twice/day, I do three. I have done the treadmill every day, and I just started using the neti pot.

A patient last week really encouraged me to try it. I didn’t say what I had, but he has been feeling so much better doing it, he thought I should give it a try. It is a funny gizmo, but it actually feels so good to get water in my system. In my sinuses and then drains into my lungs. It is so dehydrated in there. It is like taking the drink of water you haven’t had half the morning and it tastes so good.

That’s the whole problem with CF in a nutshell, not enough water. It is a like a desert in there. That’s why CFers do so many nebs. My poor lungs are just trying to do the best they can with a system that is half functional, using half its usable parts, less for some.

Is this manageable? It is, but to honest some days barely. It is. I shouldn’t say that. I am feeling stronger and this neti pot is really helping, combined with the 5,000 other things. But, I was ten minutes late to my PFT appt because of traffic and I just said, “I give up.” Then I kind of chuckled and said, “Fuck it.” I just thought I will go anyway because I need a new culture and see what happens. The next shuttle was actually faster than normal and they took me of course, because it happens to so many people.

I am so relieved that I don’t have to be admitted today. But when I do, it isn’t the end of the world either. I have to stick that in my thick skull over and over.

So, the course – I keep doing what I am doing. It is working, so keep at it. I was thinking of doing acupuncture again, but decided no. It is expensive and it is motionless. It has benefits – without a doubt. Instead, I want to buy some snow shoes. I actually like the snow, when it is pretty, how it absorbs all the sounds and reminds us not just that there are seasons but there are reasons too.

I have this magical thinking that I can do things that seem and may be impossible, and I may not be able to actually do them in real life. But if I think I can, and I dream I can – then maybe I will?