Day 28
Gratefully, not a lot to report. It says something when shortness of breath is down to just isolated incidences you can identify. Especially when you have bronchiectasis. 15-20 secs top, maybe four times spread throughout the day.
Little bit of weakness and fatigue more than I've been used to in the past week, but exceptionally minor and wouldn't be noticeable had I not been feeling so well. For most it wouldn't register or show up on the radar because it's such a common part of the daily mix of crap feelings.
No bleeds, thankfully. Not much in the mucus, either.
I didn't move around a lot at work, so I had that braindead tired you get once I got home, but once I could rest (funny as it sounds) and get some proper food in me, address the pain, etc. I was good to go. The pain just just annoying, probably not pill-level, but it's been helping me smooth over the shortness of breath a bit, which I realize is "cheating" a bit, but I was doing pretty well without it anyway, and I'm interested in opportunities to exercise myself away from shortness of breath -and- pain, and I did another exercise tape today, except for some deep lunges, taking it at my own pace and with one pound lighter weights.
All things considered, this is my first "month" down the hatch and I could not have predicted this much success this early on in terms of quality of life. Especially with the sh--storm it started out like. I'd still very much like to get one of those home lung function meters or a pulse ox to measure relative ups and downs, even if they're not so great at absolute accuracy, to document patterns and motivate/push myself to stay high.
I am with United and United's documentation says you get approved for six month, then re-evaluated for improvement and the next batch is approved for two years, but my refills say the one I finished today, the one that came in the mail, and one after. Not sure if I keep having to call it in, before the approval, or if there are new rules nobody told me about just yet, or if it has something to do with the plan I have ending or changing before the end of the year because of the Affordable Care Act's marketplace shake-a-roo.
I would really miss this if I had to stop taking it. As I mentioned before, I was just out for peace of mind and chasing some improved numbers, but feeling less CF-y is an unexpected but wholly welcome "side effect." If I got pulled off of it, I suppose it would be like looking down at the rest of the world after climbing to the top of Everest. You wanna stay up there for as long as you can, because it took so much effort to get up there, but if you can't live there forever you just are happy to have seen it and known it and tasted it and you'll always have that memory.
In the meantime, though, I'm living it up. I got so much done this week it was beyond belief. Energy was consistent, focus was consistent, sleep was pretty distant. I have been able to live each day for the sake of each day, without regard to long term plans or dreams and the stresses of what's to come (either in trying to make sure some things happen or that some things don't). That's a new one for me. I used to live too much by what the past demonstrated to me. Then I lived too much in the future, controlling my present based on what may or may not happen.
Since I've been feeling well on this, I've been able to stay in the here and now mentally and emotionally and it's allowed me to extract a lot more from even the minor moments in life, which is both great and uncanny, because I'm finding it fits my personality way more now that I'm my more mature grown adult self...just haven't had a chance to really experience it before because it saps your energy and spirit and brainpower to fall apart physically every day.
I pray more and more people get a chance to push through and be on this side of it, if it's at all possible for them. And if not now, with this, then with some of the other stuff coming down the pipe. It's not even the surprise or the novelty. It doesn't overwhelm me so much as disarm and confuse me. You feel better enough to go, "Damn, that's better," but in a way that's comforting because it feels like it's no so overblown as to be a flash in the pan. It feels like it's sustainable, here to stay. It's just such an incremental improvement, in such a big increment, that it starts redefining parts of your perspective.
