Middle of Day 18
I feel like I need to interject early this time around.
In the interest of full disclosure, I stopped taking Pulmozyme about a week ago. I intend to get back on it as soon as possible, but the storage and cleaning conditions for my mouthpiece were not optimal and I think it was making me sicker.
With my pulmo office not getting me my bronchodilator or antibiotic, and without even my pain medicine, Orkambi and the vest are literally all I'm doing right now.
Also, twice since I started I took ibuprofen, which I normally don't, because I had that embolism years ago and they said Motrin would thin my blood. But the Orkambi lit says it might lessen the effects of ibuprofen, so I felt comfortable taking a little more to accomplish the job of a little less. I think it played into at least one of my bleeding episodes. Also, I was told once that overworking the lungs when they're in low function mode sometimes causes blood to back up into them to keep them from collapsing. A couple times I overexerted myself doing natural everyday things and I have to wonder how much of a role that played as well.
I had tried eating one of those melatonin chews from the drug store to help me sleep better a while back. I found them to be effective pre-Orkambi and didn't think anything of doing it again while on Orkambi.
The timing was SO close to when I was getting those infection-style feelings, I thought it might have played into it. I'm not so sure now: Last night, I knew I needed to sleep to heal, to get any sort of restorative function to climb out of this mess. I also had theorized that it making me want to nod off would kill off some of the "AAAH F--K ME" tense hyperventilating shortness of breath stuff. It was making me anxious and that made it even harder to breathe.
It played out really well last night. It didn't make anything infection-style come back, I got some decent sleep, and waking up in the middle of the night and for real, finally, in the morning, it did not feel as severe as the day before. Not attributing credit until I know where it's actually due, just happy to be farther from disaster with some of it.
That's the other thing. Florida sucks all summer long. It's inhospitable, at least in east central Florida where I am south of the Cape. The weather is getting decent and less humid and I am more finely tuned-in to the hows and whys of my breathing.
I think I mentioned before having a sense of how well or strong I was by the "heaviness" feeling in my limbs or how inflamed they are. Today, walking around, I still ran out of breath, but it took more effort to get to the same out of breath place. And even as bad as my breathing is, everywhere else I can TELL, even without pain meds, and even without EXERCISE, feels like it's rounding the corner. It feels healthy, it feels okay, it feels not strong (I'm not strengthening it) but flexible and light.
I feel like I may be on track to be like these 3 weeks + folks...
It's micromanaging to high heaven. These are some of the longest, most grueling days of my life. Like a weird, creepy preview of how hard things will be for me in 5-7 years, if I'm still alive.
But if it can just finally LIFT, like it seems like it wants to, I will consider myself the luckiest rat bastard on the face of the Earth.
