Tuesday, December 10, 2013

5am blogging to milerz.

(backstory: its 5am & I havent gone to sleep yet -- so for me its still Dec 9th)


( high-flow nose cannula )
today marks a cf milestone for me. I dont really know what it is about today butttt this morning I woke up & just decided that I am fighting back against my cf & I'm not going down without a fight. right now I am getting ready for bed, but I've been in the best mood for the most part of today. its like I just decided that I'm fighting back & my body responded. I requested to be on a high-flow nose cannula last night before bed & only made it til mid day wearing it. it helped clear out my nose (sinus issues are starting), but my o2 was only at like 86 on that.. so I took myself off & just turned up my regular nose cannula to 4liters & my o2 bumped up to like 93. that should be the opposite right? thats what I thought too. the high-flow is supposed to force your lungs open & I just felt like I was doing it wrong. they keep telling me that theres no way to "do it wrong," but I just felt like I was taking these deep breaths the whole time. & it was making my heart pound from what I think was over-working it. I just didnt feel confident in myself to breathe on it.. if that makes sense?

so up until today, I've basically been a zombie. existing, responding, & functioning but just emotionless. I havent been wanting visitors. cuz I've just been sitting here like duhhhhhhhhhhhhh. no cares. no thoughts. no nothing. I was just trying to chalk it up to my high bloodsugars. so I'm  diabetic, right? & since I'm on steroid bursts & there's also dextrose (sugar) in my antibiotics, my bloodsugars have literally been 200s -- 300s -- 400s the ENTIRE time that I've been here.. which is like a week & a half. my eyesight is soo wonky, I cant see anything in the distance. so I have to realllly squint. but up close? things are clear! once again, I'm trying to just believe that its due to said high bloodsugars. idk.

this visit is a weird one. I've never experienced anything like it & everytime I come in, its something new or different. my body just doesnt respond to my antibiotics like they used to. when I was first admitted for my cf, I would leave here & not have to cough for literally a week! but thats long gone. when I leave now, it barely feels like a "tune up." its just like stabilizing it for what it can do. I definitely need to get into gear more for my pre testing for transplant.. because I'm almost done w it! I literally only have 3 more to do. I had one done today -- heart echo. & next will be the right heart cath. which I heard will be a catheter through my leg & I will be put out for it. thankgawd.

so I know its been awhile since I blogged last, but I was inspired by my brother to blog it all out :) so yeah!

good wishes. good vibes. good thoughts. & so it is.

1 comment:

  1. For everyone that is reading this entry, this was Natalie's last entry before she passed away on January 7th, 2014, after a 21 year long battle with Cystic Fibrosis. She left behind a legacy that warms our hearts and spirits. We know that our Natalie Diamond is still with us, in every breath we take. We miss her more than words will ever express...I miss her every minute of every day. Life isn't the same without Natalie.