thursday aka my favorite day of the week!

ello lovelies! its thursday && that means aside from #throwbackthursday, you get to hear from me ;)

( waiting on the doctor )

well I had a dr's appt w my CF doctor today. it went well, nothing really about it caused concern. so thats good! && the only thing that changed was that I asked to be put back on advair && hts (hypertonic saline). coming from someone who refused to do hts at home, its shocking && I understand ;) but at least its only 3.5% for now. much tolerable than 7%. bleh.
my fev1 was 37% today && when I'm in the hospital, it goes up to 42%. however, 37 is an improvement for me. so I'm okay w it for the most part.

so ever since my ICU scare back in january, I've considered myself "scared straight" in a way. && no matter how much this disease actually scares me, I like the fact that I think about it differently now. of course its all for the better. I basically had my head in the sand whenever someone outside from my dr's office or myself wanted to talk to me about it. aka my family. I know that we as CF'rs all deny, to an extent, that we actually have this terrible disease. && its understandable, but also very naive. now it just breaks my heart when I hear from fellow CF'rs who dont exactly take care of themselves like they should. mild case or not.. because I was once there && now I see what my family must have felt. theres just so much you can do for someone. you cant physically make them do their meds/treatments, but I try to be there for others as much as I can. especially now that I'm open about it && love connecting w other CF'rs.

( right after I got the call )

yesterday I got my 2nd call from the pre lung transplant team at the University of Washington. they called to go over cost for each part of transplant. I didnt even come close to guessing! but these baby steps that are being made towards getting my double lung transplant are scary, yet exciting :) they'll call me back in a couple weeks to set up an actual appt in seattle. this is hugeee. this whole process is feeling so surreal now that its actually going. we havent even come close to doing anything big for it yet, but I'm really excited. to be honest, I never even thought about a transplant before I started connecting w other CF'rs.. from what I've learned about it so far from others, I love that I can have time to sort of mentally prepare. especially w my anxiety issues. I dont know all the details that include getting a lung transplant, but I do know that its not an instant "fix" && that it'll take time to readjust && hard work to keep it up. but after that ICU scare, I dont want to come anywhere close to that again....

( improvising at its finest )

my insurance is lame. they kick me out of the hospital after 9days now && I have to continue 5days w at-home IVs. I dont particularly like doing them at home because it adds to my anxiety, but so far we've done pretty good. I'm so glad I have someone like michael to help me w everything. he's truly an AMAZING❤ murse. && we've gotten the routine down pretty good && quick. this time, instead of just 2antibiotics, I had 3. one was brand new to me (forget the name). but we had 2pumps && 1push antibiotic. I prefer the port SO much to the PICC lines. && I am so glad that I got one! seriously. took awhile to get used to though. when I'm accessed, it kind of weighs down on my port && after 2weeks of antibiotics I am soo ready to be deaccessed. showering is definitely the best part about being deaccessed! oh && itching again ;)

back to the whole transplant idea, I would honestly be nowhere w out the support team I have. my family && boyfriend are my rockkk. I got so lucky w them being so supportive && just wanting the best for me, whether that means pushing me to do my treatments/meds or just being active. && I cant thank them enough for all that they do.

its april 25th soooooooooooooooooooooooo that means just 6more days til #CFawarenessmonth !! I've never "celebrated" may as our awareness month before, because I either missed it or just didnt know when it was. so I'm planning on posting a picture every day of the month to help raise awareness. you could say that I'm just a tad excited ;)

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

( PS, shoutout to my sister +Nicole Dean, guess what I'm eating atm? nalley chili ! )

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

nebulous night.

well its 10pm && I'm still in a crappy mood. todays just been bad && I think a lot of it has to do w being on the childrens floor this admission. I used to prefer it here.. I mean the rooms are way nicer, but they actually treat me like an adult up there. plus there were a few specific ppl I was looking forward to not seeing anymore && of course I've already seen like all of em && its only my 3rd day being here! I'm just all sick && negative && irritable lately. I hate it....

I've never really put this out there before but I've read of some other cf'rs feeling this way before too.. I know I come into the hospital often. && as I'm used to it, I'm sure my family && friends are too. but even though I may be used to it, it doesnt mean I like it && am okay w being here alone. it really hurts my feelings when I dont hear from anyone even to say "hey" or get visited. I used to have set regulars come to see me && now my friend Andrew, my mom, my sister, && my boyfriend are the only ones who come every. single. time. I try to brush it off like its nothing but its really hard && lonely being in here by myself all the time. yeah I want the nurses to leave me alone, but not my friends && family. it especially hurts when certain family members dont make an effort to at least ask me how I'm doing. I know no one knows I've felt this way because I dont feel like I have the right to speak up about it. idk, sometimes I just wanna straight up ask ppl why dont they come to visit but in my mind its no ones fault but partially mine that I'm here, so I cant. ppl have given me the "you know I'd visit, but I hate hospitals" excuse countless times but seriously, who doesnt? its not like I love it. I have to be here.

I really hope I can stay in here for the whole stay this time! insurance kicked me out last time && I had to finish at home. it went fine, I just didnt particularly enjoy doing it. made me all anxious && we slept thru a dose once. wasnt too big of a deal, but still.



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

plot twist: sickkkness.

soo today a sickness kicked in w a fever, puking, && me feeling like a huge piece of shit. tried babysitting my nephew, but that didnt work. && I was also supposed to have a dr's appt but I couldnt make it on account of the crappiness feeling of my body (next available appt was in may too).. last time I checked my temp it was 100.9 && I dont recall ever being that sweaty while sick. it sucked.

at least I have good ol ben&&jerry's half baked to make me feel momentarily better. these last couple of times I've gotten sick.. IDK HOW. I'm not around anyone whos sick! its ridiculous. I do not get it.

I seriously hate my life sometimes.... this is gonna be a short post. I have nothing more to say && dont feel my best.




g'night.

( taking the week to work on my positive outlook )