Tuesday, November 29, 2011

My breath of life

So I know I haven't given details about my first trip to be evaluated for lung transplant.. and I'm not going to yet.  To be frank, I just .. can't handle it yet.  I'm trying to avoid this as long as possible haha and I get a little emotional thinking/talking about it.  So... praying that this round of IVS really helped, and that I don't fall into my typical pattern of digression !  BUT in the meantime.. I just HAD to share how awesome God is haha not that I could share that if I wanted to because he's too great for me to even understand.. but I like when you get snippets of his glory :]

My last blog talked about how Jesus always one ups me.  And how my lung function was 31% - Praise God!  Well, a few days ago my friend Vanessa sent me this link (thanks Ness!) http://www.vic.australis.com.au/hazz/number031.html  --- read that ! haha I don't want to give away what it says, but I have to share some of it -- it talks about how God is always 1 more than perfect.  In fact, the word for The Almighty in Hebrew is "El".  And it's numerical value is 31.  So in short (even though I still urge you to read that short link) The Almight is 31, my lung function is 31.  Talk about The Almighty being my breath!! How cool is God!

The Almighty is the breath in my lungs because God is love.

Tuesday, November 22, 2011

Oh God, you always out-do me.

Quick post because I'm really tired haha and I want to read some Bible before I fall asleep because I know if I don't... I won't end up reading today -- and I've been slacking in that.  Anyway... I have the sweetest Lord ever. 

Today we went back to the doctors for my xolair injection and for the doc to check up on me to see how I am after we changed one of the IV antibiotics in hopes that I would improve more quickly.  And I am!  I am basically off of oxygen, except for when I sleep, do therapy and walk around a lot/exercise.  AND I'm definitely feeling better than I was last week.  Not 100% but definitely better.  So I go in to the office and right away everyone notices that I'm better because apparently I look better too... (and I thought I was hot before.. hahaha just kidding!) I go into to PFT (pulmonary function test) room, they weigh me -- 99.6!  Praise God!  I was 99.6, then got sick and went to 99 and now I'm back at 99.6! Then we did the PFTs...

The last PFT I did was on Friday and all three tests (you do the test 3 times) came out at 24% lung function.  Today, my first test was 28%!  I was happy!  But I still had 2 more tests.  The doctors assistant - Victoria (LOVE her!) - was encouraging me to get to 30%.  Test number 2 : 29%!  YAY!  I took a short break and then we did test number 3 -- as I was breathing out as hard as I could -- a minor thought.. not even like a dedicated prayer -- just God help me get 30 -- flashed into my mind as quickly as it flashed back out.  Seriously.. it wasn't even like a second on my brain.  I finished, sat down and was at thirty...one percent!  HAHAH 31!!!!  I barely even asked for 30 but God gave me 31 -- and it was just such a great reminded that what we think is GREAT is so miniscule to God -- what HE has in store for us is more than we can think of -- and certainly more than we ask for. 

I've asked for so many things.. and sometimes it's according to God's plan and sometimes He says not yet or no because it's not lined up with His will.  But it was such a nice reminder today that I serve a God who always one ups me.  I pray for a blessing, but he gives me more.  I prayed for 30.. He gave me 31.

I am breathing at 31% lung function because God is love.

Thursday, November 17, 2011

dream a little dream

God is SO nice to have given me a relief period, which I think my last post was about.  It was AWESOME to breathe better, but I am on the decline again.  Well.. I was on the decline -- I'm down now lol.  I started coughing a little, and then that progressed, along with heavy breathing, low oxygen, fevers, bla bla bla.  It's all in God's hands.

This is the first time I've been dependent on oxygen all the time.  I had to wear it all day and night.  Thankfully I can take it off for short periods, like going to the bathroom, now without it going too low.  I'm currently on IVs, too. 

We went to the docs yesterday, which was much less of a struggle than I had anticipated.  My sisters are sooo good to me -- and Vicky put time in find a chair that I could get pushed in (basically a wheelchair) to borrow.  (Thanks Lai family!)  And my Aunt Onion (yes, Onion! haha we couldn't pronounce Yvonne when we were little, so this became her official title) came along to help my dad and I.  (Thanks Onion!)  I held my oxygen tank, and Onion pushed me up the hill, into the building, to the elevators, to the office.  When I got up there, I did a pulmonary function test which came out lower than we would hope.  I'm supposed to do the test 3 times -- it's just breathing into a machine as hard and long as you can -- but I couldn't complete it the second time, so we didn't try for a third.  According to the test, my lungs are functioning at 24%.  No bueno.  But I kind of think it's not completely accurate because I'm not feeling well, so of course it'll be lower.  Anyway, after that I saw the doc and we talked.  She changed on of the IV meds I'm on, and I'll see her again next week. 

We got home, and my doc called saying I was a little dehydrated according to the blood work results she just got, so she was going to start me on IV fluids along with the meds to hydrate me.  The nurse came to show us how to work the IV drip, and it was easy.  Well.. I should say easy...er said than done.  When we hooked it up, it didn't work correctly and after an hour and a half, none of the fluid had gone in.  OY! 

Along with everything going on last night, before we found out about that I'd be on an IV drip (which means I have to stay home and be connected to the IV pole thing), I was scheming to be able to go to school tonight.  I texted someone I know who's on campus at the same time, and he said he'd be willing to push me in the chair to my class from the handicap parking lot.  I was psyched.  I thought I'd be able to do it!  And, not going to lie here, since my dad was so against me going to school, I wanted to go all the more haha.  But then the IV drip thing happened.. and I knew I wouldnt be able to go.  I was upset.  I'm really emotional lately lol but I was tired and now something as easy as going to school, I'm being held back from.  I was on the verge of crying when my sister from another mister, Nisha, came over with boston market for dinner!  YUM!  There was some talk about serious topics, and of course arguing, between my parents and I, but then things calmed and Nisha and I just hung out and played video games.  We all sat down to eat a little later, and then had a fun talk at dinner.  I am SO thankful for last night -- I think it's so nice how God sends people to help you feel better. 

Onto today.. I didn't sleep very well last night.  I had put my oxygen down to 1 liter when we got home because in the car I was off oxygen and my levels were staying at like 92 -- PRAISE GOD!  But at home I started getting a headache even though my levels were still 92 93.  So then I bumped it up to 2 liters.. and then last night I felt like I needed more while I was sleeping so it's back up to 3 liters. 

Tomorrow is the meeting and testing with the lung transplant team -- which DOES NOT mean I'm getting a lung transplant any time soon -- but it does mean that my doctor thinks I will need one at some point and so I have to go for an evaluation consisting of breathing tests, blood work, exercise endurance, etc.  I just feel kind of blah about it.  Like any second I'll wake up from this dream and be breathing like I used to.  I can picture myself walking into the dance studio I used to go to, and shaking off this nightmare.  I can picture myself laughing and thanking God that this was all just some crazy dream because how did I get here?  I used to dance 6 hours a week.. I used to be this hyper little thing.. I wasn't irresponsible; I didn't slack on my meds or therapy and now as a result of that am in the position I'm in now.  I just don't quite understand and sometimes it just doesn't feel like it could be real.  I was thinking today how my attitude is so much more defeatus.  (I'm pretty sure thats a word.. and if not.. it is now haha) .  When I'm sick I usually feel like - ok be the warrior in Christ that I'm supposed to be! -- and now I just feel like.. God.. is this really your plan?  If it is, I'm totally down for it.  But am I somehow inflicting this upon myself?---  Not only that, I feel SO disconnected from God.. I havent been reading my Bible like I should, or like I need, and my prayer times have been so short its ridic.  I'm trying to get back to really being focused and dedicated, but I feel like I'm doing it out of my own strength and not His -- hence the feeling of disconnection.  What I can hold on to though, is that FEELINGS aren't concrete.  I can FEEL a certain way without it actually being true.  And the truth is that God doesn't let go of me.  He's there even when I feel like He's not.  And He loves me even when I feel like I'm somehow doing something to keep us seperated.   I am sealed by the Holy Spirit -- I am not seperated from God.  And what I absolutely love is --- whether this is real or a dream, self inflicted or God's will, feels right or not,  God is still God.  He is in control and He is my Protector, my Refuge and my Strength. 

Unfortunately, this isn't a dream.
Fortunately, Jesus is stronger than reality.

It's ok that this is real, because God is love.

Friday, November 4, 2011

contests, coasters and playtime, oh my!

Bahhh.. soooo much to write so I was going to say I'll try to consolidate, but everyone knows it's going to turn out hardcore long anyway, so brace yourselves.

So anyway.  Halloweekend -- Friday night my friends Celeste and DJ (her boyfriend) and I went to this place called Gabriele's because they were having a halloween party/costume contest.  So I wanna say this idea was from God -- but I don't want to accidentally dishonor him or something cause it's a crazy idea -- but I dressed up as "Baby Gaga" hahah. It was fun to legit dress up again!  ANDDD I won second place in the costume contest!  --- a kindle!!! and gift certificate to eat at Gab's.  ANDDDD had a super fun time with the pirate couple, who by the way looked SO good!

Saturday I didn't do much, and then Sunday I went to Six Flags fright fest with my friends Johnny and June.  It was interesting because my parents bought me a 2012 season pass for my birthday, so I had to wait on this really long line to get my pass, but the J's had day tickets, so we decided that they'd go on a ride, and I'd get my pass and we'd meet after that.  It worked out well because their line was actually longer than mine!  So I got to stay on schedule with my eating, and be all responsible and what not haha.  Anyway, after that we went on the fright walk -- and put our "game faces" on, as Johnny calls it -- so that we don't get scared of the people popping out at us hahaha.  We went on Nitro (my favorite ride!) and Batman!  It was SUPER cold hahah we were all freezing, and decided to leave a little earlier than we originally planned -- which was perfect timing because I was worn out at that point. 

On Monday, ACTUAL Halloween -- I went over to my sister's house and saw the cutest little bumble bee ever, aka my niece Julianna.  SO STINKIN CUTE!! And she LOVED trick or treating!  On my way there, on the parkway or watev, my other sister and I met hahah she was driving almost right behind me and we kept passing each other on the way haha I love having sisters!  Anyway, so we went walking ... a lot of walking .. with Juj to trick or treat, and then went back to the house and hung out for a little and played.  <<--- that's bolded on purpose.

God is SO NICE!  I can't get over it.  I want to be able to babysit my niece without anyone worrying that I'll have a coughing fit, or be incapable of being 100% on for Juj.  I want to be able to playyy with her without coughing or fatiguing after 2.5 seconds.  And God let me.  I WALKED  A LOT for me, and wasn't choking.  I wasn't out of energy.  I even threw her up in the air!!  That wouldn't have even crossed my mind before.  But I could and did do it!  And we played!  I am so thankful for that it's ridiculous.  The blessings that God gives me through that little girl are insane and too many to count.  I keep going back to how happy I am that she doesnt have CF -- not only because obviously I wouldn't want her to have it lol but because then we wouldn't be able to know each other, we couldnt hang out or play.  God eliminated every hindrance and block just for our play time last Monday.  Thank you, Jesus!   ANDDD on top of that, I got to go to fright fest (after attempting to probably almost every weekend of October), and although I tired kinda quickly, it was the perfect timing to tire, and just bahhhh.  Andddd I won the costume contest which is exciting!  I'm enjoying the books I'm reading on my kindle, and really feel that they're helping me refocus because I wasn't prioritizing God enough these past weeks, and I'm still not and won't until I'm completely undistracted and blinded by His Glorious Self in heaven, but I'm still happy he's helping me grow more now.  Bahhhh and I LOVEEEE when God just romances you.  I know that feelings can be deceiving, but God gave us feelings as well, and I reallyyyy enjoy when I just feel wooed by Jesus, and that's totally my feeling today.

Today I woke up, and wasn't sucking the oxygen out of the room every breath.  Usually when I wake up, it's such work to breathe, that I need to do my treatment first thing.  I can't walk downstairs to get my nebulizers even, I have to have them in my room from the night before, or have someone go get them.  Today I felt like I could walk around the block before doing my treatment!  I felt tight, like I needed it, but not like I was unable to breathe without it!  All I kept thinking was how cool that was -- air was going in without me trying that hard.  Praise You, God! 

I don't know why, but later on in the night, I started to feel not that great, and coughed a lot more than I have been during my therapy, and even just resting.  But still that coughing is nothing compared to the coughing a few weeks ago.

My doctors don't read this, but I still want to give a shout out to Dr. Emily DiMango, Victoria Robinson and the whole team at Columbia Presbyterian Hospital... God is using you to help me!! And I am SO thankful for these breaths, but even more so for the memories that I get to make because I can breathe better.  Thank you guys!!!  Bahhh <3

I honestly just feel like crying lol this makes me think that maybe God's plan has more for me than I thought.. maybe I'll get even better from here.  I know I pray for that, but it's kind of like unexpectant, which we are supposed to pray WITH expectancy.  But I just feel like -- Ok, I'll pray for that, but even if it doesn't happen, I'll still follow, You, Lord. --- But then when it does happen... I'm so taken -- which I should be because God is SO good, but I need to have more faith that He does say yes.  I can't imagine how Shadrach, Mishek and Abednego felt saying that God would save them from a burning hot furnace, but even if he didn't they still were loyal to only God.  THAT is FAR more miraculous than what I pray for, and God DID IT!  I wonder -- were they really expecting him to save them, or did they feel like I do -- kinda expecting God to say no and then being totally swept off their feet when he said yes?  Bahh I'd say that I'll ask them in heaven, but I think being able to hug and look into the eyes of the King of Kings, I won't really care about how they felt hahah

Anyway, God is just so nice :] And to think.. I'm not even close to grasping His full niceness.. this is just a taste.  crazy.

I had playtime because God is love.