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

hospital admission #917365478468461764816416819

yepp, I'm in the hospital again. I've been here about a week now && was already debating coming in a few days prior, but what really sent me in was that I was puking/coughing up plugs of mucus w straight blood. there was no green whatsoever, just redness. what the really weird thing was? was that I wasnt worried or scared by it. it was just happening && I just sat there like.. huh. my boyfriend was the one who was like "ohk, you need to call someone NOW." so we went into the ER at like 3am && didnt get into a normal room until 9am.
its been a hard week. I havent been able to eat that much && when I do, I usually cant keep it down.. I'm on 3different antibiotics (plus one for shingles) && it really takes a toll on my body. they always make me nauseous && the med they're giving me for my nausea, knocks me out 3x a day soo all I do is sleep. which would be fine, but I'm also a diabetic remember, so I have to wake up to check my bloodsugar n stuff.


but anyways, Michael is here now && staying w me a couple nights. which makes me soo happy! he's sleeping && I'm blogging. suh cute ;)

( your life is your message to the world )

its supposed to be vlogtober as I mentioned before, but I've really been failing at vlogging everyday. I think I've done it like 5times.. MAYBE.

NetFlix recommendations: Glee



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

Quick Update.

well I'm in the hospital again && I've been here a week. but I'm about to get out! && not only will I be going home, but without homeIVs :) no need

when I got admitted, it was mainly because of my anxiety. my anxiety is so powerful over me, I hate it. but my doctors up'd basically all of my anxiety meds && I've been feeling a lot better.


the internet has been a lot more cooperative lately soo thats a major plus. I came in w more movies/tv shows already on my comp than last time, but still.. when all you do is sit here, watching things gets really old && you can blow thru so much in like no time at all. 

the nurses have been kind of weird this admission.. or maybe its me. I know I've been a little different. I've been way more paranoid than I usually am. so I've been questioning a lot of their methods. but I dont think what I've been questioning is all that bad. like.. 2 of my meds run every 8hrs right? well they dont wait that long. I understand the 1hr before/1hr after window that they can give (even though I dont agree w it), but they once ran a dose only 6hrs after the last one ran. && for an every 12hr dose of an inhaled med, the RT tried to give it to me only 5 && a half hrs after I did the last one.... that kind of stuff freaks me out because they give those directions for a reason soo how can you change that?

my babe stayed the night w me lastnight :) he showed up w a rose && lots of treats! we watched our shows/movies, cuddled, && talked. it was perfect.
 
good wishes. good vibes. good thoughts. && so it is.
xx

I'm back :)

hellllllllllllllllllllllllllllo, friends.
I know its almost been 3weeks but I just got my resources back!


so since my last blog entry.. I got out of the hospital, turned 21, went to see +Taylor Swift in concert, && am having more panic attacks lately. YAY

when I got out of the hospital, I was doing just fine health-wise. up until I left for my concert, that is. I wasnt really feeling that much run-down already, but the junk I was coughing up was a color that I had never seen come out of me before. so it worried me && I called my dr the morning we were leaving for tacoma. he put me on cipro + minocycline. I kind of really suck at taking them at home, but I try really hard! they also drop my bloodsugar (causing some anxiety) soo that sucks.... BIGTIME.

..soo for my bday my mama surprised me w a family dinner at red robin, followed by a spontaneous 21 run w my siblings..

the concert was UHmazing!! I went w my seester && we drove straight there, to the dome. we had to get dressed in the car right before we stood in line (for 2.5hrs) && basically the whole concert I was fighting off a panic attack. but it was soo worth it! I got a t-shirt && was able to sneak in food&&drink ;)
we stayed at our grandmas house afterwards && left for home the next morning. it was INSANE to be in the same place as her, dudes! if anyone would like to, y'all should def check out the #redtour hashtag on instagram -- worth it :)

the openers were Casey James && Ed Sheeran. && I've never been to a concert where every single song (even from the openers) were good && worth the $$ I paid for to see the show. it was crazy good. oh haha && beforehand when we were waiting in line outside of the dome, there was this guy who was preaching about jesus. he even thru some things about tswift into the mix. it was totes annoyballz.

now back to the anxiety attacks.... I had such a bad one lastnight that my boyfs sister had to call for an ambulance for me :( the emt's ended up being dicks && were basically telling me that there was nothing that they could do for me && that there was nothing that I could do for myself too. oh && they even had the oddasity to say that they didnt have the "luxury" of staying here all night. so I sent them away && michael came home from work && I ended up calming right down. I even almost started back up a couple of hrs later, but didnt result into anything major. I also spent about 4hrs of today trying to calm myself down....



Music Recommendations:

• Wrecking Ball - Miley Cyrus
• Royals - Lorde  
  
  
  
  

  
  

  
  

  
  

  
  

  
  

  good wishes. good vibes. good thoughts.

  xx

new winds are blowin thru my life!

I woke up this morning && had to make a tough decision for me.. I decided to stay in the hospital && work on continuing to get better. so its a good thing, but hard nonetheless. I've never had reservations about going home before. yes, theres been times where I lied about how I felt just so I could go home. but I cannot afford to do that anymore. I had to be honest w myself && I was honestly scared. this morning I could just see new smoke over the hills && my mom told me that there was a new fire in idaho. yay.

this visit has been, without a doubt, the roughest for me. && that doesnt include my ICU stint, of course. things just keep piling on && not really getting better. I mean my lungs arent inflamed anymore (thanks to steroids), but they're still not as clear as they could be after being on IVs. my "tune-ups" just do not work like they used to.. && that scares me.

so glad I'm off steroids though.. I know they serve a purpose, but I dont particularly like them. they made me feel absolutely miserable the first few days && made my bloodsugars so high that I couldnt even eat. I ended em the other day && all of my insulin regimens are back to normal. bigger doses of insulin make me nervous && I never trust em....

omg! so I had to get reaccessed tonight && the guys hand freakin slipped && it yanked the needle out all wrong, sending me to a breakdown. I mean obviously he didnt mean to, but I requested someone else to finish the job. I was so pissed&&hurt.

I'm waiting on an RT to start my night treatment. && for my mama to get off work.
 
good wishes. good vibes. good thoughts. && so it is.
xx

3weeks behind!

alright hey all! so I know I am about 3weeks behind on blogging.. our wifi went down && I had no internet. buttt I just got admitted into the hospital (for an unexpected "tune-up") && have internet again, yayy! only thing I was looking forward to. that && feelings better, of course ;)

so the jist on the admission is that there has been a lot of smoke in the air lately, due to fires. && now the farmers in hayden are burning their fields. real cool. I honestly want to sue everytime it happens, because how can that be leagl w other people out there having lung conditions? I remember back in 2005, we got a settlement from doing such things, && it wasnt even worth it! it didnt change anything && the amount was bullshit.

speaking of the hospital.. I'm in this really weird room this time. its away from the front desk, which I like, but I guess the nurse said its a 'no pressure' room? so theres a window on the door, boo. && a weird thing in the window, blocking about 1/3 of it, for reasons that go w the 'no pressure' thangg. but  I mean, we all cant have everything perfect everytime right? then life would be a bore!

....

I just went down to get an xray done of my chest && now I'm just waiting on someone to come access my port. I wish I could've gotten a meal pass goin so I could have run down there real quick while I'm waiting. but I know that I basically have to order my first night in. I get so used to it up here sometimes, that I actually forget how hectic it can be out there for the nurses. I mean, my admit was just as much as a surprise to them as it was to me....


so since I havent been able to blog, I also havent been able to update y'all about my pre-testing for transplant listing! well I've hit a couple snags w it, what of course, && am actually just waiting for some dates to come&&go. I just recently found out that my insurance doesnt cover dental, something that I've never once had to deal w before, && so I have to find a low-priced dentist soon. I also needed to find a primary care dr because they have to send over the referrals for my echocardiogram && right-side of the heart pressure tests.. rather than my clinic doing so. so I found one, but my appt isnt until sept 26th! I also need to finish my pap-smear that I could only do half of, but I'm waiting on a couple of other things for that too.. && on top of all that! my car broke down about a week ago or so && even if I had appts coming up, would have to find rides for.
oh && I also sorta moved across town, soo thats been hectic as well. I now live in a household of 8 :)


also! I'm doing a #CFslideshowproject && would love for any cysters//fibros that I can get to join me! what it is, is its basically like any other CFslideshow you've seen.. but I want to make it more personal. I'm gathering info from those who I've actually talked to, been talking to, or those who want to talk more. so if any CF'rs wanna be apart of it or just know more, email me at: natalie.plhf@gmail.com 

 

( you want this life? then fight like hell for it! )

fact: summer is hot ☀

I knew I felt something missing today && I finally figured it out.... blog day!


so I'm at home now, doing IVs, && I'm soo glad to be out of the hospital! I was really hesitant at first about it. because I'd rather just finish it all in the hospital than stressing over (&& missing) doses in the comfort of my own home.. sounds weird. but its not!

speaking of which.. ever since I got my iPhone, I've been able to make more videos for my YouTube account && I even made a vid about such-ish things ↓

• when I got to the hospital, my fev1 was 32% .. a new low for me.                                          but when I left, it was 45% .. a new best for me!

• also when leaving the hospital, the dude who "transported" me to the lobby in a wheelchair, went to highschool w me! weird right?

after IVs (which is hopefully tuesday), I get to start all of my testing that will result in whether or not me getting listed for transplant. && I'm excited, but also very frustrated w myself. frustrated because I'm doing the same shit that I always do - procrastination && lack of drive. I have the motivation, a lot of it actually, I just always stall. but I just need to suck it up && push myself because my biggest fear throughout all of this is N0T the transplant itself. no, its the fact that they wont take me seriously && wont think that I really want this && deny me lungs.. which will result in something terrible. that is my biggest fear. && I cannot let that happen.
tomorrow I am making calls!

moving onto something easier to talk about - art journaling. I did it once for art in highschool && this lady from my hospital offered it to me again the day I got discharged. I'm a creative type && looove art && journaling, so its pretty much the best of both worlds :)


&&&& back to phones.. I (long story short) accidentally changed my phone #.
the reason was this.. I went to the store && got a new phone activation card for my phone, just like I do every month. I have straight talk, dont judge. so anyways, I went to type in the service pin into my account online (&& this was the first time doing so since I got my new iPhone). the serial # for my old phone was still in my account info && I knew it looked wrong, but I was like "maybe it isnt...." well it was. && I activated service on a non-working, old phone. so I tried switching it to a "new phone" but it wasnt working && then somehow I changed my number, so that really screwed things up (especially when I finally decided to call customer service for help). I thought I changed my # to something else than it is now.. so technically I think I did it twice. this is my life.. its like when I accidentally changed our internet service && racked up the bill, when I was like 11, all over again!




NetFlix recommendations: New Girl

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

hospital // moods // appts.

ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!
I dont know why I forget so easily to blog! I knew I wasnt going to make the thursday deadline, so I was planning on doing it yesterday && wouldnt ya know it.. I forgot.. AGAIN.
ugh..


so the reason why I knew I wasnt going to make the thursday mark, was because I had planned&&worked all thursday on a video project for my YouTube channel. its one of those flashcard story vids telling my story w CF. its only a 6min video, but it took me all day w planning on what to say, how long to hold up each card, check to make sure the writing wouldnt turn out backwards (that took me way longer than necessary to find out..), choose the right themed music, etc. well I could tell you all about it, or I could just show you. so here it is!

~~~~

alright so I am currently in the hospital (boo) && my mood is turrrrrible! I am so irritable at EVERYTHING. I wish I could blame it on an IV med or a steroid, but its not. its just me && I hate it. maybe its just the nurses that are driving me nuts, but azsxdcfvghjbjklm....

but I do get out in 2days which is good! yet bad. I've only been in here 6days (on monday) out of 2weeks.. my insurance sucks. they kick me outta here when I'm "too healthy" to be in. its usually 9days of getting to be in here, but I came in just before my CF was getting bad. like I could feel it creepin in, so I didnt want to feel its full strength && thought I was doing something good by getting ahead of it this time.. I'll still continue the regimen at home, or Michael will actually, but still. I'd so rather just do it all here. less stress. less worry. less forgetfulness. I just dont understand how I'm "too healthy" when I'm trying to get a double lung transplant! so whats that supposed to even mean then?? me fev1 just before I got admitted was 32%, the lowest its ever been outside of the hospital. last time it was checked, it was 37%. doesnt sound like much of a difference (to a healthy person), but to me thats a lot! the highest I've ever seen for any of my pfts was 42%..

ugh && my hands are itching so bad right now that I want to rip my skin off!!!!

but enough w the negative, my sister&&niece stopped by lastnight to cheer me up since I've been irritable&&down lately. they brought me goodies n love. ♡
  

so a couple of days ago I got a call from the transplant coordinator, down in seattle, about my checklist for tests that I can do in my own town before I do the bigger ones back in seattle. I found out my bloodtype && was informed on a couple other tests that we hadnt gone over yet. but its okay, nothin major. there are about 9tests that I'll need to get gone here before returning to seattle. she told me the dentist appt would take the longest (mostly in wait time). I havent even been to the dentist in years so I'm reallyreallyreally not looking forward to it.... but I know its necessary && will be worth it in the long run. just gotta keep reminding myself of the end goal for all of these baby steps I'm taking.


NetFlix recommendations: 90210 && Bully.

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