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! )

change is a comin....

..I can feel it. && its very plural: health. life. company.


health
dont know how many times I've said it already, but I am without a doubt the most lazy && inactive CF'r. && I know it needs to change. right meow. I already have my alarm to go off in exactly 9hrs from now && am starting off w getting up earlier than the ush. every day. doesnt matter what I have planned for the day, its happening.
one thing that is really motivating me for this decision, aside from health, is that I missed my niece's first graduation ever from pre-school this morning. because I was sleeping. I had no idea && slept thru the txt that was supposed to alert me about it. it broke my heart.

life
as stated before, I am very lazy. && I just need to stop that, plain&&simple! basically all I do is sit around on my laptop.. && I know its no good. I've been meaning to go for walks daily && I was doing okay for a bit right when I got out, but of course theres this gap of time right when I get discharged where I think I'm just invincible. of course thats also when I'm at my best, health-wise, so I feel awesome. but I know I need to kick my butt into gear always. && not let it catch up w me && take control. I will not let it get the very best of me. I will fight. I will live.

company
I've let a few things get out of hand when it comes to the company I keep. whether it be friends or family && in this case, its both. pretty much all of my life I've felt that most of my relationships w people have been one-sided. I give && I give && dont ever feel like I get the same in return (other than Michael♥ of course). so lately I've been speaking up for myself && showing my true feelings about the situation. I honestly dont think most people in my life really grasp the very scary reality of my life. yeah they know what it does to me && what it can do to me, but they also dont consider how close to death I really was back in january w my whole ICU scare.. since then I've taken my CF very serisously && am more sensitive to life.

about a week ago I helped my mom raise money for the CFF (Cystic Fibrosis Foundation) via Great Strides. we set up a booth outside of her work && raised almost $300! it was great, yet unsatisfying at the same time.. because most of the people who donated only walked up, put money in the cup, && walked off without a word. it really blew my mind that people would donate their own money to something they knew nothing about or didnt care to. ever since I've been open about my CF, I've loved explaining it to anyone who asked. but I only got to do that a few times w this fundraising tactic. I did, however, meet one cool dude who walked up && said "oh CF? yeah I think you're one of my patients." meaning he was the office manager of not only my CF clinic, but also at my diabetes dr's office, && my 3rd dr's office who handles all of my anxiety/panic attack issues. it was really interesting to pick his mind on the disease. he had nothing but words of encouragement && hope.

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

xx

great news !

oh my gawd.. I just got off the phone w the pre lung transplant team again && its official, I HAVE AN APPT ON THE 24TH OF JUNE to go over to seattle && get the testing done to see if I can be listed !

its, of course, still MAY && therefor still #CFawarenessmonth. I love posting stuff everyday on the matter. I've never known what I wanted to do w my life before, but now I think I want to be an advocate for CF. that would be UHmazing. wonder if I could look into that..

" If I never had CF, I’d be a little taller, my lungs a little fuller, && my skin less salty.

If I never had CF, I’d take my sweet time, take it all for granted, be terrified of doctors, && hate the smell of hospitals.

The beach would be for tanning && the gym would be for weight loss. I’d be a little more selfish, have less ambition, less drive, && less pride.

I’d probably slack off knowing I've got my whole life to do great things.

I’d hug you less knowing I've got my whole life to hold onto one.

If I never had CF, I wouldnt be me. "

for as much as I hate CF, I appreciate it at the same time. its taught me a lot about life. && about myself.

CF is ugly&&beautiful.

it makes us feel ugly && look beautiful.

its makes the ugliest things come out of our bodies, && makes the most beautiful hearts go in.

our coughs are ugly, our smiles are beautiful.

our thoughts&&attitudes on life can be ugly, our words can be beautiful.

our lives are ugly, our stories are beautiful.

our pain is ugly, our strength is beautiful.

 
well I have just realized that I have not announced that I got a new kitty! her name is Spice && shes a 1yr old calico :)

shes soo much better than our last kitty (who ran away). for one, she actually acts like a cat.. nice, loving, && is very chill.

I love her! but shes a daddys girl. I dont really mind since our last cat haaated michael, so its a nice change of pace.






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