Sunday, July 21, 2013

freakin A! that's freakin.

oh hey, got some really basic news: missed thursdays blog AGAIN....

well I'm on my 3rd week straight of IV antibiotics && I'm not gonna sugar-coat this.. IT SUCKS. I had an appt w my CF dr last monday && the good news was that I gained weight (120lbs). bad news? he tacked on an extra week of IVs. the reason being: my breathing tests were basically the same as when I first got admitted, which is obviously not good, && that was after being on IVs for 2weeks like normal! I kind of expected it because I had missed a couple doses once I took it all home.. the schedule was way too early for me so I would sleep thru my alarms. I can literally sleep thru most anything. anyways, my whole schedule got really messed up && kept getting pushed back n back && now they're fine because they're more catered to my kind of sleep-schedule. this monday shall be the 3week mark && I'm reallllllly hoping to finally be done! showers are one of the hardest parts about being hooked up.. but not the hardest. the hardest is occasionally missing holidays && events (aka my nephews 1st birthday party today). I was so crushed that I broke down crying over my CF. I've never not hated my CF, but I absolutely loath it when it comes to things like this. I know that he's only a baben && wont even remember this party, but still.. it matters to me! && I was really looking forward to seeing all of my family too. I havent been able to see them lately && miss them a lot..

never had my port accessed for this long before soo its especially itchy && annoying right meow. I just wanna pull it out myself! but wont. doesnt help that my arms are extremely itchy all. the. time. && look like they have an allergic reaction going on, which they dont. its just that it started out as a couple little scratches from my kitty &&they got so itchy that I accidentally scratched em open whilst in the process of curing the itch && now its a never-ending cycle :(
( right forearm )
speaking of more rain for this parade, I think my arthritis is kicking in finally. whenever I bend down or squat, putting all my weight onto my knees, they hurt w extreme pain. the only thing I can think of is my arthritis. after I noticed that, I thought my wrists might have been starting up too (wrists, fingers, ankles, shoulders, && knees are the typical spots). but I cant really rely on that because once I notice a little something, then I think its happening everywhere. my brain is a very powerful thangg for me && I have not found a way to even come close to beating it. it likes to play many a games/tricks on me all day long.... speaking of which, I really need to see an eye dr! I've been seeing things more often lately. like things in my peripherals that arent there, or materials moving (when in reality they shouldnt be).

I have my first set of appts, towards getting listed, this week! 3 CTscans are set-up for the 24th && the dreaded pap-smear on the 25th. weee.

SO I initially started this blog entry around 10pm-ish saturday night && it is now 5am sunday morning. got distracted w dinner, baked cupcakes, && spent some quality time w the boyf. he works soo much that we hardly get to see eachother really. makes me sad.. but I know he works so hard to support us. && for that, I am grateful! well I can start to feel my sleep-aid kicking in finally so I will bid thee adieu.

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


Thursday, July 11, 2013

fact: summer is hot ☀

I knew I felt something missing today && I finally figured it out.... blog day!

so I'm at home now, doing IVs, && I'm soo glad to be out of the hospital! I was really hesitant at first about it. because I'd rather just finish it all in the hospital than stressing over (&& missing) doses in the comfort of my own home.. sounds weird. but its not!

speaking of which.. ever since I got my iPhone, I've been able to make more videos for my YouTube account && I even made a vid about such-ish things

  • when I got to the hospital, my fev1 was 32% .. a new low for me.                                          but when I left, it was 45% .. a new best for me!

  • also when leaving the hospital, the dude who "transported" me to the lobby in a wheelchair, went to highschool w me! weird right?

after IVs (which is hopefully tuesday), I get to start all of my testing that will result in whether or not me getting listed for transplant. && I'm excited, but also very frustrated w myself. frustrated because I'm doing the same shit that I always do - procrastination && lack of drive. I have the motivation, a lot of it actually, I just always stall. but I just need to suck it up && push myself because my biggest fear throughout all of this is N0T the transplant itself. no, its the fact that they wont take me seriously && wont think that I really want this && deny me lungs.. which will result in something terrible. that is my biggest fear. && I cannot let that happen.
tomorrow I am making calls!

moving onto something easier to talk about - art journaling. I did it once for art in highschool && this lady from my hospital offered it to me again the day I got discharged. I'm a creative type && looove art && journaling, so its pretty much the best of both worlds :)

&&&& back to phones.. I (long story short) accidentally changed my phone #.
the reason was this.. I went to the store && got a new phone activation card for my phone, just like I do every month. I have straight talk, dont judge. so anyways, I went to type in the service pin into my account online (&& this was the first time doing so since I got my new iPhone). the serial # for my old phone was still in my account info && I knew it looked wrong, but I was like "maybe it isnt...." well it was. && I activated service on a non-working, old phone. so I tried switching it to a "new phone" but it wasnt working && then somehow I changed my number, so that really screwed things up (especially when I finally decided to call customer service for help). I thought I changed my # to something else than it is now.. so technically I think I did it twice. this is my life.. its like when I accidentally changed our internet service && racked up the bill, when I was like 11, all over again!

NetFlix recommendations: New Girl

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

Saturday, July 6, 2013

hospital // moods // appts.

I dont know why I forget so easily to blog! I knew I wasnt going to make the thursday deadline, so I was planning on doing it yesterday && wouldnt ya know it.. I forgot.. AGAIN.

so the reason why I knew I wasnt going to make the thursday mark, was because I had planned&&worked all thursday on a video project for my YouTube channel. its one of those flashcard story vids telling my story w CF. its only a 6min video, but it took me all day w planning on what to say, how long to hold up each card, check to make sure the writing wouldnt turn out backwards (that took me way longer than necessary to find out..), choose the right themed music, etc. well I could tell you all about it, or I could just show you. so here it is!


alright so I am currently in the hospital (boo) && my mood is turrrrrible! I am so irritable at EVERYTHING. I wish I could blame it on an IV med or a steroid, but its not. its just me && I hate it. maybe its just the nurses that are driving me nuts, but azsxdcfvghjbjklm....

but I do get out in 2days which is good! yet bad. I've only been in here 6days (on monday) out of 2weeks.. my insurance sucks. they kick me outta here when I'm "too healthy" to be in. its usually 9days of getting to be in here, but I came in just before my CF was getting bad. like I could feel it creepin in, so I didnt want to feel its full strength && thought I was doing something good by getting ahead of it this time.. I'll still continue the regimen at home, or Michael will actually, but still. I'd so rather just do it all here. less stress. less worry. less forgetfulness. I just dont understand how I'm "too healthy" when I'm trying to get a double lung transplant! so whats that supposed to even mean then?? me fev1 just before I got admitted was 32%, the lowest its ever been outside of the hospital. last time it was checked, it was 37%. doesnt sound like much of a difference (to a healthy person), but to me thats a lot! the highest I've ever seen for any of my pfts was 42%..

ugh && my hands are itching so bad right now that I want to rip my skin off!!!!

but enough w the negative, my sister&&niece stopped by lastnight to cheer me up since I've been irritable&&down lately. they brought me goodies n love.

so a couple of days ago I got a call from the transplant coordinator, down in seattle, about my checklist for tests that I can do in my own town before I do the bigger ones back in seattle. I found out my bloodtype && was informed on a couple other tests that we hadnt gone over yet. but its okay, nothin major. there are about 9tests that I'll need to get gone here before returning to seattle. she told me the dentist appt would take the longest (mostly in wait time). I havent even been to the dentist in years so I'm reallyreallyreally not looking forward to it.... but I know its necessary && will be worth it in the long run. just gotta keep reminding myself of the end goal for all of these baby steps I'm taking.

NetFlix recommendations: 90210 && Bully.

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