Thursday, March 28, 2013

breaking old habits?

soo my day started out w missing a new dr's appt :/ it was at 1:15 && I got up at noon to start getting ready. I was almost done && checked the time, it was 1min past when my appt was supposed to start. now if I lived closer, it prob wouldnt have been a big deal. but since I'm the next city over, it takes 20-30mins to get there depending on traffic. so I had to reschedule. it was w an ear, nose, && throat doctor about a polyp in my left nostril && possible sinusitis. since I havent been able to smell anything in over a yr && my nose just runs constantly, they think it has something to do w it. whats weird is not my doctor but my dr's partner is the one who discovered it. yes my dr always looks in my nose every appt, but I've also brought up these symptoms to him too && he never caused an alarm so I didnt think much of it. I've heard of a lot of sinus surgeries throughout the cf community && always thought to myself "I'm so lucky I dont have that to add onto all of my ailments." now I'm not saying I need surgery or that was even brought up, but it would suck if it got to that point....

( deaccessed shot )
now onto daily life. since I just ended home IVs && am not sick anymore, I've been feeling kinda restless && just wanna be doing things around the house. like I've done some laundry from our mountain of a pile of dirty laundry in our closet, did the dishes lastnight, cleaned my bottle sterilizer that I'm gonna use once again to sterilize my mouth pieces, cleaned the microwave inside&&out, && thinking about attacking the bathroom as well. I was just cooped up in my room for so long trying to get better that now that I'm able, I dont wanna just sit around anymore.
I'm also going to make myself go downstairs && talk to the guy below us to see if we could possibly get a treadmill up in dis bish ;) I'm sure it'll be fine if I explain my situation && promise to only do it in like the middle of the day so its not as loud or annoying. he seems pretty chill anyways.

besides cleaning, I've also been hanging out w some friends more. I know that once ppl get into serious relationships pretty much all of their free time goes into spending it w their significant other. && I'm guilty of that. we both know it, so occasionally we try to do things w our friends on our own. yesterday I made a day of it. first went && hung out w one of my bestfriends, Ashley. we painted my face like the one && only David Bowie.. or Ziggy Stardust rather ;) I went to my moms work afterwards && definitely got some looks. it was pretty funny when ppl on the freeway didnt know what to make of it. its kind of funny to think now that I really dont care what ppl think of me. back in highschool I was the most insecure, shy chick who cared waaaaaaay too much of what ppl thought. as you can see, thats not the case anymore! I actually have confidence && a way different personality....
then later on in the night, I went && hungout w my twin Allie. she's leaving for AZ soon && it was sad seeing her pack. our friend Grebes also came over && we had a tbell run && watched part of the movie Hick (NetFlix). all of us used to hangout everyday then life got in the way && we havent seen much of eachother lately.

gotta go finish laundry && cleeeeeeeeeeeean!


Thursday, March 21, 2013

going home :)

its officially spring now.. even though it looks like winter here. but I'm putting good vibes out into the universe && hoping for some happy return.

so my doctor literally just left my room telling me that my insurance is really pushing for me to finish my IV antibiotics at home. so thats what the plan is. at first I was against it. I've been thru this once before && it resulted in a 5hr panic attack && my first trip to the hospital in an ambulance. not fun. && not something that I ever wanted to repeat. but my boyfriend && doctor have encouraged me into trying it again. && honestly, now I'm excited! I get to see my kitty (which I missed like crazy this week), sleep in my own bed next to my boyfriend, && just be in my own home. no more annoying nurses && screaming patients next door. weeeeee!

muh port, its about a month old && still tender at times. being in the hospital, it gets reaccessed once a week. just like a dressings change. so they did that today (perfect timing) && it went a lot better than the first time (I was a nervous wreck last week)! soo its been flushed once outside of the hospital && accessed twice. feels a little less painful each time, but all in all it still feels like they're poking my chest w a thumbtack. pain is just a part of the game ;)

my mom has really been pushing me to talk to my doctor about when exactly can I go down to seattle to get an evaluation done for possibly getting a double lung transplant. I brought it back up this visit && he said he was going to retalk to a nurse about it back at the clinic. but I still havent heard anything. I'll probably bring it up (again) tomorrow morning when they go over the at-home care for my port.
lastnight I watched the documentary called "65 redroses" about a girl named Eva w CF. it was about her journey to getting new lungs. it was really good, but it made me ball like a baby throughout pretty much the whole thing. lol. I truly recommend it to anyone watching, whether you have CF or not. its a real eye opener && just a small fraction of a look into the life of a CF'r.
for some perspective, this picture has been circulating around facebook/instagram the past couple of days via CF'rs. I've shown it to a couple of family members && its crazy to look at.
( I'm generally between 30-35% )


Saturday, March 16, 2013

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.


Thursday, March 7, 2013

#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