Thursday, May 30, 2013

ch ch ch changes.

well, I havent made many changes from my last post.. except for the company notion. I've started speaking up for myself when it comes to my loneliness. && I've been making more plans w more friends. I never thought I'd be one of those girls who isolates herself w her boyfriend, but things happen. && me n michael have discussed it && its true, I need more ladyfriends in my life && should get out there more. I've always kept myself in this shell of mine && stayed at home. did in middle school. did in high school. && even now, still doing it. I had a brief moment when all of my group of regular friends were all still living nearby that we'd hangout every single night && go out n do stuff. but that was very brief && I miss it.... I have however reconnected w my friend J Bish && I'm excited to let that friendship blossom :)

even though I rarely skip treatments anymore, I've tried to honor a pact w my cyster April. the pact is to send a pic to eachother everynight of us doing our treatments. keeps us honest && on schedule! I got the idea from a fellow fibro on fb. it sounded like such a good idea, but I didnt want to post it online evernight + ever since I "tried" taking a hiatus from fb, I wouldnt always have access to it. my lil hiatus didnt work && didnt even last a week. really pathetic, but I tried.. kind of.
I'm just so sick of that being thee way to look into someones life. its okay for family/friends out of town, but for the ones who are right here its aggravating. I dont post nearly as much as I used to. I dont really see the point. plus I'm mostly on twitter or instagram. && it doesnt matter how much you post there, l0l.

 I'm kind of feeling like its borderline hospital time. I ran out of pulmozyme today && I always do this.. I just reordered it today. so it wont even be here til tuesday :(
I'm starting cayston early, as in tomorrow, to try to pick up the slack. I hate when I do this but I'm just so bad at getting things done. && I hate doing em too. I know something needs to get done && I want to stay on top of things, but I just dont. its so frustrating to my core.

so I'm blogging right && kitty just comes up && plops down where ever she feels like, which in this case was my left arm. whilst typing. she's so cute. && becoming a mamas girl.. shh ;)


so I'm gonna leave you w a fact:

which is totally totally true.
I dont care what anyone else has to say on the matter! :)


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

Thursday, May 23, 2013

change is a comin....

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

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.

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.

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.

Thursday, May 16, 2013

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.