saturday session.

oops! I forgot to blog && its now saturday :/

well I'm back in the hospital after only being out for 1.5months. I know that sounds bad && trust me, I felt bad about coming in so soon. I felt as if I was letting everyone down. but heres the gist.. in reality, I'm just getting ahead of the curve. I came in just before I started feeling like I always do before I come in: completely weak, not even wanting to walk so my boyfriend carries me places, dont wanna drive, no appetite, breathing even more shallow, && blahblahblah. yes, I was starting to feel weak&&drained, losing my appetite, && the last couple of days before I came in my breathing was starting to feel more shallower. but I still wasnt as bad as usual. the biggest thing was that my weight only went down 1lb in that whole time frame! I was 109 at check-in && I was soo surprised. I mean I'm sure it fluctuated throughout the time, but it must've stayed within the general range. I was so happy though. I'm finallllllllllllllllllly putting on weight && its literally WHAT I NEED RIGHT NOW. because me && my dr are looking into getting me to seattle to get evaluated to be put on a transplant list && my dr told me that the only problem we'd probably meet was my weight. since I'm finally putting on weight on my own, this couldnt have come at a more perfect time :)

BUT at my check-in, my dr checked my nose && said she thought I had a polyp. so she ordered a sinus xray && now they think I have sinusitis. she doesnt seem too worried about it && wants me to see a specialist when I get out. yet another thing && yet another dr. I honestly feel like every few yrs I'm diagnosed w something new. seriously. first w the cf, then mrsa, then anemia, then diabetes, then the arthritis, && now this. && its allllll a result from the cf!

on my first night here I developed an allergic reaction to an IV antibiotic that I've been on for about 4yrs now. the symptoms felt a lot like red mans, even though I havent been on vanco since they finally took that off my regimen after benedryl + pepcid werent doing the trick anymore. see I'm allergic to the inhaled tobi && I usually do fine on the IV version, tobramycin. but I must've just gotten immune to it over time. also, I got my port accessed for the very first time. I was a nervous wreck! but it went fine. && once the numbing stuff was in me, I hardly felt anything. just pressure. I'm so glad I decided to get the port. not having to get a picc line this time, really eased some nerves.
the things we have to go thru, gawd I hate cf....

butttttttt onto a lighter note. I've said it many times already ;) but I'll say it plenty more.. since I'm still new to opening up about my cystic fibrosis, everyday I ask myself why didnt I get involved sooner? anyways. blog, meet april. april, meet blog:

april is a cyster of mine that I've been getting close w lately, also the first. she's awesome! I'm starting to feel like I can share anything w her.
talking to fellow cf'rs really helps me. they honestly&&truly understand what I'm going thru.

xx

#cfawareness ♡

alright so as cf'rs && family members/friends of cf'rs, we all know that May is cf awareness month. which is coming up (obvi) && I'm excited about it because this is the first year I will be able to recognize it! so in addition to awareness month, cf also has a specific worldwide awareness day now - September 8th :) now I've also heard of 'cf awareness week.' but whenever I look that up, I keep seeing different dates in different countries.. so its kinda just vague when it comes to awareness week. although, one of my cysters posted online for her friends/family/fellow cf'rs to wear purple this monday the 11th in support of cf awareness week, so as far as I'm concerned thats it ;)

I've said this many times && I will continue to say it until a cure is found but.... like all awareness, cf awareness is soo important because to this date there IS NO CURE. && the more awareness we put out there && fundraising we do, the closer we get to finding a cure for this awful, messy, && tiring disease.

one of my cysters has a poem page online && about 2weeks ago, she told me that I inspired her to write one for me. I felt it was only fitting to post it here....


Life is hard
That is something all can agree
But for some life is harder
Because of something most can't see

For some every breath is a struggle
And they yearn just for air
When they look at other people
And they think it's not fair

But they don't show their pain
Instead they mask it with a smile
They show the world their best faces
When inside they feel vile

They feel like a burden
So they don't want to complain
They struggle to fight
Bound by the rose chain

People judge them for reasons
They don't understand
It's not like the roses
Were something they planned

When they know the routine
From all the times at their worst
When they can manage their treatments
Better than any nurse

I know it sounds sad
But that is the truth
For some they fight roses
And they've been fighting since youth

But during this fight
I have come to realize
Those with the roses
Are more than their masked guise

Rose children are beautiful
They have the best hearts
They are not quitters but fighters
This is what sets them apart

They know they might die
But they never give up the fight
They will fight for tomorrow
Even though tonight might be their last night

They fight their hardest
Until their very last breath
They are like a family
In life and in death

There is none more supportive
Than the rose children family
They will fight for a cure
So all can be free

Those affected by the roses
Are of their own kind
They are the most beautiful people
In body, heart, soul, and mind      


xx

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.

luck 

/lək/  

noun:
success or failure apparently brought on by chance rather than through one's own actions. 
verb: 
chance to find or acquire. 
synonyms: 
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.." 

xx

( also.. I dyed my hair red ! )

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.

xx

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 :)

xx

#timetoblogthursday!

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 ;)

xx