Thursday, February 28, 2013

as luck would have it..

 "how lucky I am that...." is a sentence starter that keeps playing in my head lately. && to be honest, not something that us cf'rs do often enough. we tend to focus more on the negative. which does outweigh the positives, for sure. some of the "luckys" I've come up w are: how lucky I am that.... I live in a place w a cf clinic in my town, I have an amazing boyfriend who is a huge support system && is understanding w all of my ailments, I have a great family who is so supportive && always there for me, all of my major meds are paid for thru my insurance, I dont have a more sever case, && I've become so comfortable in my skin about my cf lately.
somedays we just break down && wanna give up. && those days seem to happen more often that not for some of us. but I think we should think of something daily to be lucky for. we may not feel it everyday, but just as long as we try.

"Some luck lies in not getting what you thought you wanted but getting what you have, which once you have got it you may be smart enough to see is what you would have wanted had you known." --Garrison Keillor.

success or failure apparently brought on by chance rather than through one's own actions. 
chance to find or acquire. 
fortune - chance - happiness - fate - felicity

as I'm typing this, it feels like a sore throat is coming on. && to think just today I was saying to myself "I havent gotten sick allll winter.." 


( also.. I dyed my hair red ! )

Friday, February 22, 2013

treatments. treatments. treatments.

as I'm sitting here doing my vest I realized I hadnt even blogged today! so I'm dedicating this weeks entry to.. treatments :)

my daily routine consists of: 2puffs twice a day of combivent inhaler, 1neb of pulmozyme, every other month I do a pari neb of cayston 3x a day, && 1vest session of 20mins. I know I need to do my vest at least twice a day, so starting tomorrow it'll be the first thing I do when I wake up. promise :)

yesterday I got my port flushed for the very first time since having it put in && I was a nervous wreck. I almost canceled && rescheduled just so I could push it off another day, but I've been trying to get out of that type of mindset for awhile now && cant be afraid of the things that could potentially save my life. I dont care how much I may not enjoy it, this whole disease I was born w is much bigger than just me. && I honestly think it would be so selfish of me to not try everything in my power to keep myself healthy && living as long as I possibly can, when it comes right down to it. I owe everybody that.

so like I've said before, I have only been honestly open about my cf since last month && I've met so many new ppl w this disease online. && I've only known a couple in person.  but I didnt realize how much of an effect it would have on me until I tried it. I didnt know it could help so much in just the little I've done. I hope to someday help somebody else w this disease. whether it be just by lending an open ear, or volunteering w the foundation.


Thursday, February 14, 2013

happy valentines.

( happy valentines from me && my loves )

first of all: happy valentines && secondly: w all of the business && craziness today, I almost forgot to blog!

ohk, so no "holiday" goes by w-out some mishaps.... things in general just kept breaking, or spilling, or getting ruined. it truly was not our day! but even though we had some bumps along the way today, overall I wouldnt want to spend it w anyone else. I love you, babe :)


we recently spoiled our Ashkitty w a 3tier cat post - twas only $40 @ walmart! I call it his little castle. he loves it && can lurk on us from above all he wants ;)
it may seem weird, but having a kitty has really helped me. I've had pets before, but never fully felt mine. they always got taken/given away. but w this kitty, its almost like a therapeutic thangg. he helps keep me calm && the cat hair doesnt even bother me like other ppls animals seem to. if I'm at someones house too long, their animals hair (or something) gets to me. idk why..

so all day long I've been having these little headaches. && they've made me paranoid about my co2 levels. I havent had a serious headache since the hospital && thats when my co2 levels were crazy high, giving me migraines rather. so I'm thinking tomorrow I'm gonna call my dr && just let him know how I'm feeling && to get some peace of mind. I know its most likely all in my head, but its better to be cautious than not care about myself at all right?

alright so a little bit of heavy: I'm a firm believer in "everything happens for a reason," so my mind keeps coming back to something lately.. I was meant to have CF. but why? I really dont understand why certain ppl were meant to be born w things they have noo control over. its not like I smoked && gave myself crappy lungs. no, I was born w crappy lungs. && in NO way do I blame my parents for this, but its not my fault either. so why me? yes, its made me a lot stronger than an average 20yr old should have to be. && yes, it makes me appreciate everything && take nothing/no one for granted. so for those key things, I'm warm to the idea of having it. but on most days.. it just plain sucks! && I'll admit there have been times where I just wanna quit all my meds && just give up. but thats not me. && never will be. I was born a fighter && will continue to fight for my very last breath. but there is no way that this disease defines me, nor gives me an expiration date. I have never once believed in that. yeah it affects us all differently, but its not a given loss. we can do everything in our power && still not have the outcome we dreamed of, but its never a loss. the only way to lose to CF, would be to give up. && us CF'rs are not quitters! we're one of the strongest ppl you will ever meet. && I'm meeting more&&more everyday. && I love it :)


Thursday, February 7, 2013


its that time!

so tomorrow will mark 2weeks that I've been out of the hospital.. I actually have a CF appt tomorrow afternoon now that I think about it. but I finally took off all of the bandages on my port so its kinda freaky for me to look at && see, but also cool..

I can barely feel it anymore! when I first got home I didnt even wanna move at all, for fear it would wiggle out. I'm getting more&&more use to it && comfortable w it. at first I would have these waves of total regret && just wanted to rip it out or ask if I could get it taken out but those went away ;) thank gosh.

I admit my sleep pattern is pretty much back to how it was before I went into the hospital.... except that I'm going to bed earlier than before! like I've been trying to go to bed by midnight at least. so thats a start. but I still wake up late anyways.. I think I need to set an alarm in the mornings just to wake me up && make myself STAY up. then I'll get back on track right. but on the bright side, I've began to use my "old lady" pill box again. I know I need to use it, it just keeps me on track. I have bad anxiety issues && forget to take my pills sometimes. I freak myself out by going back n forth on whether or not I took em already. because I think of what could happen if I take em twice in a day..

I started vlogging! my youtube channel is called CF advocate<3. I only have 1video thus far, but I'm hoping to continue w it. I think it'll be cool blogging&&vlogging because its different to read about my life, but to see it as well :)

my boyfriend, Michael, got an air purifier for our room. I like it a lot actually. it may be all in my head, but it instantly made it feel like the air was just cleaner&&better! which I understand is the point ;) he's so good to me && has been so amazing thru this whole relationship. I know its hard to take all of my sickness on, but he's been so great. I was truly blessed when he fell into my life. I couldnt even imagine asking for anything better<3

random thought: lastnight I had the craziest dream about my back getting skinned so bad (by this group of guys) that you could see my whole rib cage. guess thats what I get for falling asleep to criminal minds ;)