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.
xx

i've got a secret....

....but ii cant && wont tell! ..yet ;)


soo. apart from my new style of typing, i'm pushing myself to do more treatments during the day. which is new for me. shouldnt be, sad ii know, but it is. deal w it :)
anyways, i'm trying for 3x a day. vest + cayston 3x a day, that is. pulmozyme once still (even though my dr said it can be done twice .. ii would be ordering it all the damn time if ii did that). && hts twice still. i'm hoping that it will increase my lung function to a number that will be "comfortable" enough for me on a daily basis. i'm so uncomfortable right now && all i'm doing is sitting here. typing.
ii did just attempt to tidy up my room, however. it really raised my heart rate && ii barely did much. picked up trash, rearranged some stuff, rearranged kitty's food/water, put clothes away, etc.

cant wait for our change....

the past 48hrs i've required oxygen pretty much the whole time. && ii really dont mind it. kinda wish ii was allowed to use it 24/7. def would make my life just a smidgen easier. but.. i'm not there. YET. however, since ii used it for quite awhile, it has helped. ii feel much better. i'm more positive, new outlook on this thing, feel like ii can breathe better (that may also be because i'm finally allowed breathing treatments .. H0SPITAL F00LS). the whole 2weeks ii was in, my dr wouldnt give me my breathing treatments. who does that?! he's really pissing me off lately. no way am ii letting that happen again! cuz it feels like those 4antibiotics didnt do a damn thing for me. not without any breathing treatments. idk how he could be so irresponsible.

so i've started something today. on tumblr, insta, && twitta! its called the ddlovato project && ii edited all of the pics && thought of all of the quotes. ii got the idea just from following +Demi Lovato's life w battling self-image issues/cutting patterns. she's so strong && i'm obsessed w her! i'll post the pic ii posted earlier:

soo lastnight michael took me on a date night && we went out to see TH0R2! it was UHmazing!!!! he's just so hawt. && then we ate at red robin :) it felt so nice to just have a legal beer w dinner. yumm.


NetFlix recommendations: one tree hill

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

I. do not. understand. ppl.

ALRIGHT. so lately there has been a theme in my life: morose. the only reason why it doesnt worry me is because I'm aware of it && am trying to identify its cause && therefor change it. I've just been so down these days && dont really know why. it usually only happens if I miss enough doses of my anti-depressants, but I've been taking all of em! my mom thinks its just my cf getting to my spirit. which I can see that, but its not like anything major or even big happened to put me in this mood. other than the obvious, that is.

along w my mood, a lot of ppl have been acting the same around me: rude. not family. not close friends. but nurses, yes. RT's, yes. ppl online, yes. && I'm pretty much 1 more rude person away from blowing UP. back in highschool, or just my past really, I would've kept quiet && keep to myself. but I'm different now. I speak up for myself. I defend myself when need-be. && most importantly, I stand up for others.

focusing solely on the rude ppl online.. I've had instances lately where ppl have called me an idiot for just voicing my opinion, ppl going out of their way just to bash something that is very close to my heart && that they dont agree w, && the most recent case of someone pretending to have the same lung disease I have all for attention.
I just dont understand where ppls minds/thoughts are at! like really, what in their minds is telling them that its okay to do the things that they are doing? && what is their justification? absolutely ridiculous.

&& speaking of standing up for ppl.. there are 2 subjects that are very close to my heart: self harm && gay equality/rights. always have been. I am neither a self harmer nor gay. but I've always had a sentimental heart towards both. && in honor of both, when I get out of here I want to get 2 tattoos: ; (on my left wrist) = (inside the palm of my right hand between my index && middle fingers)

 
speaking of getting outta here.. I am literally being kicked out of the hospital tomorrow, by my insurance. what is weird is that I was in for exactly 9days, just like last time. I guess I only get 9days in the hospital instead of 14 like usual. anyways, I'll have to finish my IV antibiotics at home. its so stupid because I only have 5days left! at least I'll be w my kitty && boyfriend again. I've missed them both so much :(




onto some GOOD NEWS! I have been contacted by the University of Washington's pre lung transplant team :) we've been playing some phone tag, but still. it makes this so real && scary. but I know it'll be worth it in the long run.

 
I've also been helping my mom, w her fundraising this yr, for my walk team "Natalie's Hope" via Great Strides. the most recent work I've done is a flyer. →
my next project is to make infinity scarves && sell em on Etsy or wherever. I have the technique down, just gotta find the motivation to finish ;)
I also want to look into making wristbands (like the I ❤ boobies/livestrong ones). so if anyone has any helpful info on those, I would really appreciate it!





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