poking and pradding and PFTS, oh my!

Haven't written on here in forev it feels like.  Anyway, these past days have been rough.  This morning was the hardest ever it has been to wake up.  I sat up, in pain (either broke another rib or pulled another muscle), and like so hard to breathe.. bla bla bla I think for this blog it's better that I DON'T express how I'm feeling because quite frankly, I'm just being a complainer lately -- and that's NOT what I'm called to do.  Plus, isn't it better to focus on God's glory rather than our perceived storms?  BUT, if you're praying for me (thanks for that!), please pray that I just totally connect with God.. I really hate more than anything that feeling when you pray, and you feel like you're talking to wall, or that you're useless and not fulfilling His plan.  But anyway, on to some stuff about how nice God is :]

So ... flashback hardcore to the first lung transplant evalutation... I was ok with everything really -- 7 minute walk, pulmonary function test, meeting with my social worker and coordinator, blood work -- except for the ABG.  Arterial Blood Gas.  It just sounds intimidating doesn't it?  It's when they have to take blood from the artery right by your thumb on the inside of your wrist -- which I'd had been told by a few people is a "deep and painful".  Oh joy!  The entire day I was dreading that.  I would try to watch the other people getting it done, although I couldn't really see from the waiting room.  Apparently I was pretty nervous because my mom started asking me if I was ok haha and when it comes to medical things, usually I am ok.  I know Jesus is right with me and seriously whenever I get any procedure, even just blood work at home, I feel fine because His promises are so strong and alive that I feel as though I'm walking into things with Him right next to me -- which I am, it's not just a feeling.  Anyway, this I just couldn't shake.  I prayed and I trusted God.  And usually, if it's more painful or scary than I can tolerate, God reminds me that it's just temporary.  It's just for this moment, and when this moment is over, so is whatever I'm scared of.  Anyway, for some reason Satan was just really having a field day with this fear -- I don't want to give him all the credit for my fear because I am human -- so I'm sure some of it was just from my nature, but no doubt that left the door wide open for him to play.  I was supposed to get the ABG like one of the first things.. but I didn't, which only left more time to think about it.

First we waited in the waiting room for what seem liked eternity.  Then they decided to send me to a different test (our fault, we were late.. shocker.)  So I did the 7 minute walk.  And praise God -- I did well!  I had to walk around these cones set up in a hallway and try to do as many laps as I could -- I think I did 7 laps?  But I can't actually remember.  Then we went to do the PFT (pulmonary Function Test) and that didn't come out great, but God gave me the strength and breath baby!  Seriously -- because I was worn out from the walk haha and hardcore worn out by the end of the first round of PFTs.  The guy, who was super nice and blessing himself, said I could do only two if I wanted.  But I asked God for a third, and he gave me the umph to do it.  So then comes the ABG.

The guy says to me - have you gotten one of these before? - I told him no, but I heard that they hurt A LOT.  And he said only if the person doesn't know what they're doing.  Oh good.  So he numbed my little wrist -- which I ended up freaking out my dad with the rest of the day by playing with it .. good numbing stuff! -- and then went for it.  The horribley terrifying "deep painful" test that I had been fearing all day, didn't hurt.  In fact, it didn't feel like anything.  GOD IS SO NICE! 

Then we meet with our social worker, and I got asked questions that I never thought of before.  I was asked to rate myself 1-10 on how well I care for myself.  I said 7.  My parents said 10.  So that was a nice boost to hear.  I was also asked to rate my physical ability in comparison to how it used to be when I danced.  They said what percentage of that could I do now?  I said 10 percent.  My mom said less than 5.  And my dad said like 20 lol but he was saying that my norms are different or something -- Idk he twisted the question, so I don't count his haha but anyway, as we're talking, I was saying something about God and the social worker says -- oh yea, PUSH right?  Prayer until something happens. -- I was THRILLED!  Could my social worker know Jesus Christ?!  I hope so!  She mentioned how her friend sends her devotionals every morning too.  It was so great!  God's so nice!

Thennnn... going to my latest doctors appointment.. (sorry I'm typing so much, but it's like a floodgate I can't close now! lol)  I got my hair cut short, and Victoria (whom I LOVE) was raving over it.  She is such a blessing too because she hardcore boosts my self esteem haha.  As I was leaving she said, you don't have a boyfriend?  And I said no. She said -- really?  you really don't?  you look so chique!  (she wasn't saying it like a diss, but like she couldn't believe that I didn't because I looked so good) and so I jokingly said to her -- I'm holding out for Tim Tebow -- and she got so serious and says -- you know that boy takes so much crap because of his praying -- keep on praying! -- hahah it was just so great to hear her encourage prayer! 

So anyway.. that's that.  For tonight at least.  I think it's so nice of God to remind me of His awesomeness as I'm writing this.  I hope God uses this blog to speak to you as much as He does to me.

I can rejoice and smile about past rescues even while I'm awaiting this one because God is love.

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.

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.

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.

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.

Thank you, thank you very much.

So... God is SO nice!  Shocker, right?  haha no but seriously -- I AM BREATHING! :D

We noticed that the xolair injections started to kick in at my last injection 4 weeks ago, but then I got a cold and that set me back a lot.  My doc put me on IVs just for 5 days, and I've gotten 2 more doses of xolair since then (I get one every two weeks) and I am NOT coughing a lot, and I HAVE energy, and I can do stuff!!! It's so awesome!  Yesterday I had a midterm and had to walk up stairs to get to the building it was in.  Normally, I'd be needing oxygen and hardcore choking after that, but I walked up them fine!  I was definitely breathing hard, but I didn't feel like I needed oxygen and I didn't cough!!  Then last night, God was so nice to give me a creative costume idea (baby gaga hahah) and awesome friends (celeste and deej!) to go to a halloween party at a restaurant place in piscataway.  It was so much fun, I won second place, and as we were leaving Celeste goes.. you havent coughed like all night.  ITS SO GREAT!! And today, I didn't have to ask my parents for thousands of favors.  I hate having to ask for soooo many things because I'm too tired or out of breath to do/get things myself.  AND TODAY I DIDNT HAVE TO!!! UP AND DOWN THE STAIRS I WENT AND I'M OK!!!! BAHHH!!! :D  Now obviously, I definitely still have CF hahah and it's still not great.. but boy what a change from it's been!!

Anyway, as I'm enjoying my day and thinking how awesome it is to actually get air when I take a breath, I thought -- did I even thank God yet?  I was just like one of those lepers (idk how to spell that haha)..  Anyway, in the Bible, Jesus heals a group of people suffering from leprosy and only one comes back to thank him.  And I always thought wow, how ungrateful.  But maybe they werent ungrateful..  Maybe they were just human, and in that human-ness, blinded by their own thoughts/ideas.  In other words, they were selfish.  I know this word usually means greedy, or other things, but selfishness is simply thinking of yourself before everything else, even before God.  It's SOOOO easy, I'm finding out, to be so caught up in something, or the possibilities in front of you, that you forget to thank God for the gift right now.  It's like someone gave you a million dollars, and you get so caught up with what you can buy, or invest in, or pay your debt or whatever, that you run away without even thanking the person who gave you the million dollars!  How insane would that be?!  God has given us much more than that --- he's offered and is still offering for those who havent accepted yet, eternal life.  We are all going to live eternally, it just depends where.  Eternity in life --- heaven, with streets of gold, praising God, no sickness or sadness.  Or the alternitive.  Agony, NO relief, pain, loneliness -- hell.  But I just think it's so incredible, and I take it for granted SOOO MUCH that on top of that, which I don't fully understand, God still gives us relief on earth.. I still sin, he still forgives me and blesses me.  And gives me BREATH!! I was praying the other day -- God please I just need relief.  And He brings it.  Relief... that word has never meant so much.  And even things that we consider to be small blessings are great ones.  So, tonight God is reminding me to be like the one leper who came back.  He was thrilled and couldn't wait to go live his life now, but he knew that first, He should thank God.  His priorities were straight.  So now I'm passing that on to whoever reads this.  Yes, God wants us to enjoy and delight in the blessings he gives us!! It gives him joy to give us these things!  But let's joyfully thank him for the gifts.  Don't get swept away in the excitement because the excitement can wait!  And how much greater it will be to thank God first and then be able to celebrate and enjoy your blessings with him!

I can thank God for relief, breath and many blessings because God is love.

...

Bla.. so I don't feel good. shocker. lol sorry to sound blaa. First things first.  I want to thank everyone for their prayers, and encouragement!  I always feel terrible when I say I don't feel well because I feel like I'm somehow letting you guys down.  But the truth is that your prayers ARE heard, and your encouragement DOES boost me!  So even when we don't see the results we wanted or expected, God is still moving.

Today my therapy kicked my butt.  I couldn't even fully breathe in my nebulizers because I was choking so much that my mom even told me to take a break.  But God is SO nice.  I wanted to go to church, although now all my wants are kind of disappearing behind my fatigue --- sleep is definitely winning out over things --- anyway, I was so tired and not feeling well after my therapy, I was tempted to lay back down and sleep.  But I kept praying God please.. because I knew that going to church would be good for me -- to be among other believers, and the presence of God -- THAT's what I need!  And God helped me!  He gave me the energy and motivation to get ready and go! 

My oxygen has been low today, which is weird because I feel like my cold/allergies/whatever was making me normal-people sick, has gotten better.  So as the sickness got better, my CF got worse?  I don't know.  I wore oxygen when I got home from church, and just felt blah.  I didn't want anyone to ask how I was feeling today.  Not because I'm upset about it, even though I am a little, but because it's my life now.  That's practically the ONLY thing I talk about, and it's because it's the only thing I have to talk about.  I go to school, and then come home.  My life is now scheduled around my disease.  It's dumb.  And yet, I can't do much about that. 

I cried at the doctors this past week.  They asked how I was feeling and I just sobbed.  I'm so done with having CF.  And yet, I'm not.  Obviously God has a plan for this.  He wouldn't continue my suffering if it wouldn't somehow bring him glory.  So since I'm still in this situation, it means the glory He will receive from it has not yet been completely fulfilled.  So yes, I hate CF.  I'm becoming very fed up with it.  And yet, I still want it because I would not want to change God's plans.  The days I am weak, he provides my strength.  The days that I am frustrated, he lets me vent to him.  The days that I can't even vent because I'm so done, he just sits with me.  My God is SO nice.

He's also teaching me to be less vain.  I don't exactly like the way I look anymore.  My face has gotten huge, and I'm getting a hump on the back on my neck -- no, I lied.  Not getting -- I have one.  I feel like the hunchback of notredamn's little cousin or something.  It's not HUGE, but it's huge to me.  I can feel it just sitting there, and I can only put my head back so far now.. But what bothers me most is that OTHER people can see it.  OTHER people can see my huge face and hump.  Where is my fear?  Why am I having such a fear of man rather than God?  Ah.. seems to me like all those prayers where I asked God to open my eyes are slowly, and gently being answered.  And how sweet of God to gently answer that prayer.  He knows that ultimately my looks mean NOTHING -- but he knows that to me, they definitely have a significance.  So he eases me into learning.  He protects my feelings and heart as he teaches me.  Thank you, Jesus <3

Enough complaining..

You know in the movies there's the hero?  You can picture him with his sword at his side, ready for battle, standing tall, arms to fight and yet protect.  That's God.  He IS the knight in shining armor.  He IS the protection you can just cradle into.  And I love it.  I love how he really is more than enough.  <3


This suffering will not last a second more than it needs to because God is love.