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.
xx

Sunday, November 10, 2013

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

Monday, October 28, 2013

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

Sunday, October 13, 2013

I call this "the trifecta of life."

first of all, its currently 5:22am && I'm doing my "night" treatment. the vest is going && all I can think is.. "to whoever created this thing, thankyou. you're a life saver. but also, I hate you. && this contraption."

//

mistakes. changes. moving on.

first up, mistakes. no one has the right to judge me. my mistakes have included a lot of health concerning stuff.. like: not always taking my daily meds, not doing my morning treatment, not going outside to take a walk, not giving into advice w health benefiting techniques, not always brushing my teeth, keeping my bloodsugars way too high, staying up way too late, trapping myself in my bedroom all day, not taking insulin as directed, letting my nose/almost polyps situation get out of hand, not being proactive w transplant testing, && finally (&& possibly most importantly), not fixing my mindset on how all of this is effecting me && my mental state. 

to my family&&friends reading this right now, keep in mind that all of these mistakes I've listed run thru my mind all damn day. I think about every single one all the time && they never slip my mind for one second. I really wanted to work on them from the very beginning, but the reality of my situation, that I call my life, brings me down more than it uplifts me. && so I lack motivation&&dedication to fix any of the things that I originally would want to prevent. xx

next? changes. admitting my mistakes is one of the first steps toward making my changes in life && health. I've already made some changes in the right direction on my own. I've started brushing my teeth everynight (not good enough, I know), been lowering my bloodsugars a bit, making myself do my night treatment no matter the time to actually get a treatment in for the day, backing off on the nose/polyps situation, && lastly - working on changing my attitude towards how things are going for me right now && trying to not let anyone effect my mood/how I act/what I do w myself.


last: moving on.

//

just finished up my treatment w cayston. I'm a little late w it cuz it was my first dose this month && as y'all know, its the 13th.. it feels like I havent done it in soo long. months fly by when you think back.. but when I look back at this, its different. && my meds usually arent like that. typically it always feels like I'm taking some pills or doing a treatment && so it comes to that time && you're like "ugh! I literally just did this.. didnt I?" 

//

I just want to give a shoutout to the 4 most important ladyfriends in my life right now :)

( Morgan, Hayley, Courtney, Jessica )


Morgan && Hayley are cysters of mine && I can literally talk to them about anything! I've gotten close w both very recently && us CF'rs can just click instantly over the aspect of CF alone. but since we go thru pretty much the same crap all day, everyday we connect on a really close level :)


Courtney && Jessica are both very important girls to me. they dont exactly know what I go thru w my CF on a personal level, but they try the best that they can. && they're always there for me making sure I know :)

I love you so much ladies !!!!

 



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

Tuesday, October 8, 2013

// // // //

I feel sad && I reach for my pills.
not the kind you want, but the kind you need.
they are the sure product of lacking will.
I do not take these by choice, by any means.



yellow && green wash down my throat by water.
so many thoughts running thru my mind.
will this anxiety ever be slaughtered?
anxiety I do not wish to harm you, but will you be so kind?



motivation is the driving force behind this experiment.
if I fail at this, what will it mean?
&& if I win, I’ll need to know where it went.
I wont stand for it creeping back up on me.

NTD.

Thursday, October 3, 2013

its vlogtober!

first of all....



 
&& secondly, its vlogtober! I actually just found out what vlogtober was yesterday && I had never heard of it before. but I think its really fitting, because this is the first year I've even started to vlog. it was just meant to be ;)
but anyways, the idea is that you vlog everyday for the month of october. && here are my first 2 entries..
 
 
 
 
 
 
not only am I doing vlogtober, but I'm also doing a photo challenge everyday. as of course, today is the 3rd, so I gotsta stay up to take a pic of the sunrise. not like I'm ever up for that anyways....  ;)



 
also.. in my last post I stated that I was diggin +Miley Cyrus again && its crazy, I know, but I'm INLOVE w her new cd BANGERZ! its amazingggg. 
 
favorite tracks:
  • Adore You
  • FU
  • Maybe You're Right
 
 
 
 
 
 
good wishes. good vibes. good thoughts. && so it is.
xx

Monday, September 23, 2013

remember me?

for those of you who have read my blog before, or for who read it regularly (thankyou, btw), I am no longer sticking to the 'blogging every thursday' criteria. as you know, I've been getting bad w sticking to that due to me just plain forgetting.. so I will still update regularly, just not every thursday. && not even a specific day of the week anymore, just whenever my flittering heart feels the urge :)


what I've been up to....
-- got out of the hospital w only 1week of antibiotics under my belt
-- I have my primary care dr appt in 3days
-- finished my pap-smear
-- been doing okay on my new med doses (anxiety)
-- working on getting my bloodsugars down into the 100s && keeping them there
-- making myself eat

&& most importantly..

-- been allowing myself to leave my house for a couple hrs at a time && get out into the world again without a freakout!


..whats weird about my bloodsugars is that when they're like 200s/300 I feel sound. but when they drop into the 100s, I feel heavy&&shaky..


( Khaleesi, my faav! )
OMG. ohk so I've really been getting into Game of Thrones! I finally broke down && gave it a try since everyone else wouldnt stop raving about it. atleast I didnt start w anyone else ;) but anyways, I ended up downloading all 3seasons right away && I'm almost already thru w the first season. they're really short seasons btw, 10eps? really? are you serious?





my kitty has been acting really stubborn lately. my boyf thinks its because she's always trapped in our room && that she wants to venture out. but whenever I leave the door open, she just walks by it. she doesnt want to leave. even if she did, she cant go into the other bedroom (not allowed) && she's too scared to go downstairs so there's literally no where else for her to go. unless she just chills on the stairs, which she's done before. so she's been mad at me cuz I've been getting after her for splashing her water out of her bowl EVERYWHERE ELSE. this is 3x now here && at our old place, she used to just dig the water out w her paw onto the carpet. she acts out && we dont know why. well.. she did stop doing the digging of the water when she was accidentally let outside once. she got a taste && loved it. but I dont want her going outside til we atleast own her for a yr or so. so there's no confusion, of course.



oo! CF'rs, if havent already seen the 65_RedRoses documentary, its finalllly on NetFlix!
check ittt





quick confession: I dig +Miley Cyrus again.... kbye!

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

Sunday, September 15, 2013

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

Thursday, September 5, 2013

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

Friday, August 16, 2013

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

Thursday, August 8, 2013

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! )


Sunday, July 21, 2013

freakin A! that's freakin.

oh hey, got some really basic news: missed thursdays blog AGAIN....


well I'm on my 3rd week straight of IV antibiotics && I'm not gonna sugar-coat this.. IT SUCKS. I had an appt w my CF dr last monday && the good news was that I gained weight (120lbs). bad news? he tacked on an extra week of IVs. the reason being: my breathing tests were basically the same as when I first got admitted, which is obviously not good, && that was after being on IVs for 2weeks like normal! I kind of expected it because I had missed a couple doses once I took it all home.. the schedule was way too early for me so I would sleep thru my alarms. I can literally sleep thru most anything. anyways, my whole schedule got really messed up && kept getting pushed back n back && now they're fine because they're more catered to my kind of sleep-schedule. this monday shall be the 3week mark && I'm reallllllly hoping to finally be done! showers are one of the hardest parts about being hooked up.. but not the hardest. the hardest is occasionally missing holidays && events (aka my nephews 1st birthday party today). I was so crushed that I broke down crying over my CF. I've never not hated my CF, but I absolutely loath it when it comes to things like this. I know that he's only a baben && wont even remember this party, but still.. it matters to me! && I was really looking forward to seeing all of my family too. I havent been able to see them lately && miss them a lot..

never had my port accessed for this long before soo its especially itchy && annoying right meow. I just wanna pull it out myself! but wont. doesnt help that my arms are extremely itchy all. the. time. && look like they have an allergic reaction going on, which they dont. its just that it started out as a couple little scratches from my kitty &&they got so itchy that I accidentally scratched em open whilst in the process of curing the itch && now its a never-ending cycle :(
( right forearm )
speaking of more rain for this parade, I think my arthritis is kicking in finally. whenever I bend down or squat, putting all my weight onto my knees, they hurt w extreme pain. the only thing I can think of is my arthritis. after I noticed that, I thought my wrists might have been starting up too (wrists, fingers, ankles, shoulders, && knees are the typical spots). but I cant really rely on that because once I notice a little something, then I think its happening everywhere. my brain is a very powerful thangg for me && I have not found a way to even come close to beating it. it likes to play many a games/tricks on me all day long.... speaking of which, I really need to see an eye dr! I've been seeing things more often lately. like things in my peripherals that arent there, or materials moving (when in reality they shouldnt be).


I have my first set of appts, towards getting listed, this week! 3 CTscans are set-up for the 24th && the dreaded pap-smear on the 25th. weee.



SO I initially started this blog entry around 10pm-ish saturday night && it is now 5am sunday morning. got distracted w dinner, baked cupcakes, && spent some quality time w the boyf. he works soo much that we hardly get to see eachother really. makes me sad.. but I know he works so hard to support us. && for that, I am grateful! well I can start to feel my sleep-aid kicking in finally so I will bid thee adieu.


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