Hello! Pretty uneventful week physically for normal people lol but it was pretty busy for me. Had a docs app on Wed - got my injection! Thursday I went to get bons with Dani -- LOVE her ! AND after we got cinnabons, I went to the post office, and walgreens! And I was ok! I know it sounds silly since those places aren't big trips, but it was a lot for me, and although I was tired after, it was a good tired. I also made a lot of phone calls that day, too. I felt soooo accomplished! I LOVE actually doing stuff! Friday I was wiped. I haven't been sleeping great cause my rib, but Friday night was particularly sleepless. I didn't get to sleep until 6am, and then woke up at 9am for church. BUT this is the part I love...
You know when you can't sleep, and you get soo frustrated? Or is that just me? Haha regardless, I was NOT frustrated! I just layed in my bed and chatted with God... it was so nice. So peaceful and calm. LOVE him!
Anyway, church Saturday was really good as usual, however, I might have been a little delirious from sleep deprivation hahah my friend and I were belting out oldies songs after church! haha! Later that day, Vicky and Juju came over, too. Love them! Which reminds me... if you follow me on facebook, I did NOT mean to type Proverbs 28:17 as my status! Not disregarding it because everything in the Bible is important haha but murderers and their convictions were not on my mind! HAHA!! What I meant to type was...
Proverbs 23:18
"You will be rewarded for this; your hope will not be disappointed." NLT
What God caught me with about this verse is the second part.. "your hope will not be disappointed". So many times I feel like surrending to God's will somehow hinders my hopes and dreams. The devil sneaks that little lie in telling me that giving my all to Jesus means giving up my heart's desires, which Scripture tells me isn't true. In fact, God says that when we delight in Him, he will give us the desires of our hearts (Psalm 37:4). There are so many things in life, finances or jobs or health issues that try to make me think I need to get up and steer my own boat instead of letting God be in control. And what does that even mean? Everyone always says "Oh, just let God take control." Ok... what does that mean on my part? Do I sit back and not do anything? I can't just turn my brain off.. I wish I could give a formula to follow this seemingly easy instruction on giving up control. I can't, obviously. But this week God has impressed me, yet again, and so if I had a formula, it'd look like this:
1) Take a breath (hahah :P)
2) Remember that God is GOD! We can't comprehend that. He's
ALREADY figured out everything, don't worry.
3) Talk with Him, a lot.
4) LISTEN! A conversation is NOT just one way. It would be awesome
to audibly hear God, and it's the greatest when he speaks to your heart,
but don't disregard the Bible. The Bible is part of the conversation.
When you talk, you use words right? God already prepared his words
for you in the Bible. Open it up and see! (Especially when you don't
feel like it! haaha that's a biggy for me)
5) Remember.. "your hope will not be disappointed."
I know it sounds so simple.. But God just really touches my heart with that. Tonight I was at a table with a friend and someone we'd just met. I didn't have much to contribute to the conversation and didn't really know what they were talking about some of the time because my life revolves around my health now. As I sat listening, before the devil could even take his shot at me, Jesus reminded me "your hope will not be disappointed". It's ok that I don't have an interesting life right now. My future hopes are still standing. It's ok that I feel tired right now, my hopes are still awaiting me. It's just so .. nice of God. He keeps his promises and holds my hopes so dear to him that he promises that they won't be disappointed. Now, that may mean that they are fulfilled differently than I thought, or that he'll change those hopes. For example, I have never said "Man, I hope I get a lung transplant!" ... but how many times have I asked God for breath? How many times I have I prayed "Lord, I just want to breathe." And here comes the possibility of transplant -- a way for me to breathe -- a hope not disappointed.
My hopes are on my Saviour's mind, because God is love.
Sunday, January 22, 2012
Friday, January 13, 2012
me? a farmer?
Hello! So this week lots was going on. First off, I wasn't feeling well, but let's skip over that part haha. On to the important stuff - I had pre-transplant testing and meetings. Now I just want to make this as clear as possible -- my lungs are NOT so bad that I need a transplant NOW, however, they seem to be on the slide in that direction, hence why I'm doing PRE-transplant stuff -- to be prepared if and when that day comes that I do need a transplant. With that said, the testing I had to do was to determine my "score" -- how badly I need a transplant, and whether I get accepted into the program as a good candidate for lung transplant or not. The tests were all pretty normal or easy. It wasn't easy to do pulmonary function tests (did that in November), but it was a normal test. The ABG wasn't normal for me, but easy -- I just sat there praying while they took blood from my artery. I also had to get a ct scan and a UGI -- which were both easy and somewhat normal. What worried me the most was the right heart cath test. (Warning: if you get queezy easily, don't read this part.) They insert a cathiter from near your leg area and push it up into your right heart. My friend Nicole is also getting a lung transplant, but she's ready for hers right now (Pray for her, please!), so she's gone through all the testing already and really helped me out by telling me what it was like. That REALLY took a lot of pressure off me, and I only felt a little bit worried as the testing date approached.
Before the day of the right heart cath, I did the UGI and ct scan, and spoke with the financial rep, nutritionist, psychiatrist, and surgeon. While we were speaking with the surgeon, we were talking about my port, and it came up how I have a "vegetation" on my port. Remember when I was in the hospital and they thought it was a blood clot? Praise God it wasn't! So folks, it turns out I'm a farmer and making vegetations! haha but apparently my home made vegetation is a little more problematic than we thought. The surgeon said to absolutely speak with the cardiologist that was going to do the procedure BEFORE they go in. So... by the grace of God, the people actually called me! HAHA I didn't even get a chance to call them, God had them call me first! I told Mario, the man who called (by the way, if you're reading this Mario, which I doubt you are but still.. you have a reallyyyyy nice phone voice!) about the tissue on the port and he reviewed my ct scans and said he'd speak with the cardiologist and call me back. He called back with his apologies saying the cardiologist has postponed the procedure because they are afraid the procedure would dislodge the vegetation and give me a heart attack, or stroke! REALLY don't want that! I was so happy I didn't have to get it done, and God gave me the thoughts of how he took care of me in the hospital with it. His hands are all over the little farm in my heart and the peace that only comes from God was comforting me.
It was a little nerve racking to think that I needed to get a test done for the transplant evaluation, and I couldn't because it could kill me. What do we do? God thankfully blocked me from thinking that. All I thought as soon as my mind would venture there was, "He's got it covered." Thank you, Lord!
My mom was really worried about it, even though she didn't tell us that until today. Today we met with my transplant pulmonologist, who unfortunately is leaving her position to go into a different field. She was AWESOME, like for real, and a huge blessing! Anyway, we met with her today which I had been looking forward to all week haha and when she came in the room, the first things she said were about the right heart cath. She said that they are wavering that test for me, and that they've done that in the past, because they aren't going to risk my life to get this test done. THANK YOU GOD!!!!!!! She also said my case is being presented this coming Friday (a week from today)! Pray for that please!
We were all relieved that I don't have to do the test, and that it's not a hindrance in moving forward in the transplant stuff. However, when I do get the transplant (again, not getting it now), they'd like to take the port out the same surgery because it can harbor bacteria from CF, and ya don't want new lungs exposed to that. BUT if they vegetation is there, they can't take out the port because that would definitely dislodge it. They said I might need some kind of surgery where they go into the heart and remove it, but that it's a big surgery and they would not do that the same time as the lung transplant. So.. here's the prayer request prayer warriors -- that HIS will be done!! Of course, I would really like if that means that he dissolves this "vegetation" and that the next time I get a scan to see if it's there, it wouldn't be and the docs would be astonished! And I know he can do that! I prayed it wasn't a blood clot, and the next thing I know, it's not! But... like I said before -- God gave me that comfort that HE's got this.. So if it's His will that He make it disappear, that's what I'll pray for. If he's got something else in mind, that's what I'll pray for. Also.. please pray for me to stay strong and faithful in being His servant in this. Thanks everyone!!
Also, I just have to say how I LOOOVEEE how God lifts me up. The name of Jesus is powerful! I was having a miserableeee day yesterday. Horrible, horrible mood, and not breathing well or feeling well at all. And in that bad mood, and not feeling well, I slacked on my duty of being his servant. I was angry at everyone, had road rage (evn though I wasn't the one who was driving haha), etc. I was so sorry that in this trial, I didn't seek his face, but instead complained and got angry. And yet, today, he still lifted me up, and helped me remember my priorities and my joy, and still remained my Protector <3 bahhh Jesus <3
Oh! and how nice is it that this risky clump of tissue on my port actually saved me from having to do the procedure I was scared of?! Is that Romans 8:28 or what?! "And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them." BAHH! If THAT's not working everything together for the good, I don't know what is!
Jesus even uses my "vegetations" to help me because God is love.
Before the day of the right heart cath, I did the UGI and ct scan, and spoke with the financial rep, nutritionist, psychiatrist, and surgeon. While we were speaking with the surgeon, we were talking about my port, and it came up how I have a "vegetation" on my port. Remember when I was in the hospital and they thought it was a blood clot? Praise God it wasn't! So folks, it turns out I'm a farmer and making vegetations! haha but apparently my home made vegetation is a little more problematic than we thought. The surgeon said to absolutely speak with the cardiologist that was going to do the procedure BEFORE they go in. So... by the grace of God, the people actually called me! HAHA I didn't even get a chance to call them, God had them call me first! I told Mario, the man who called (by the way, if you're reading this Mario, which I doubt you are but still.. you have a reallyyyyy nice phone voice!) about the tissue on the port and he reviewed my ct scans and said he'd speak with the cardiologist and call me back. He called back with his apologies saying the cardiologist has postponed the procedure because they are afraid the procedure would dislodge the vegetation and give me a heart attack, or stroke! REALLY don't want that! I was so happy I didn't have to get it done, and God gave me the thoughts of how he took care of me in the hospital with it. His hands are all over the little farm in my heart and the peace that only comes from God was comforting me.
It was a little nerve racking to think that I needed to get a test done for the transplant evaluation, and I couldn't because it could kill me. What do we do? God thankfully blocked me from thinking that. All I thought as soon as my mind would venture there was, "He's got it covered." Thank you, Lord!
My mom was really worried about it, even though she didn't tell us that until today. Today we met with my transplant pulmonologist, who unfortunately is leaving her position to go into a different field. She was AWESOME, like for real, and a huge blessing! Anyway, we met with her today which I had been looking forward to all week haha and when she came in the room, the first things she said were about the right heart cath. She said that they are wavering that test for me, and that they've done that in the past, because they aren't going to risk my life to get this test done. THANK YOU GOD!!!!!!! She also said my case is being presented this coming Friday (a week from today)! Pray for that please!
We were all relieved that I don't have to do the test, and that it's not a hindrance in moving forward in the transplant stuff. However, when I do get the transplant (again, not getting it now), they'd like to take the port out the same surgery because it can harbor bacteria from CF, and ya don't want new lungs exposed to that. BUT if they vegetation is there, they can't take out the port because that would definitely dislodge it. They said I might need some kind of surgery where they go into the heart and remove it, but that it's a big surgery and they would not do that the same time as the lung transplant. So.. here's the prayer request prayer warriors -- that HIS will be done!! Of course, I would really like if that means that he dissolves this "vegetation" and that the next time I get a scan to see if it's there, it wouldn't be and the docs would be astonished! And I know he can do that! I prayed it wasn't a blood clot, and the next thing I know, it's not! But... like I said before -- God gave me that comfort that HE's got this.. So if it's His will that He make it disappear, that's what I'll pray for. If he's got something else in mind, that's what I'll pray for. Also.. please pray for me to stay strong and faithful in being His servant in this. Thanks everyone!!
Also, I just have to say how I LOOOVEEE how God lifts me up. The name of Jesus is powerful! I was having a miserableeee day yesterday. Horrible, horrible mood, and not breathing well or feeling well at all. And in that bad mood, and not feeling well, I slacked on my duty of being his servant. I was angry at everyone, had road rage (evn though I wasn't the one who was driving haha), etc. I was so sorry that in this trial, I didn't seek his face, but instead complained and got angry. And yet, today, he still lifted me up, and helped me remember my priorities and my joy, and still remained my Protector <3 bahhh Jesus <3
Oh! and how nice is it that this risky clump of tissue on my port actually saved me from having to do the procedure I was scared of?! Is that Romans 8:28 or what?! "And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them." BAHH! If THAT's not working everything together for the good, I don't know what is!
Jesus even uses my "vegetations" to help me because God is love.
Sunday, January 1, 2012
not my usual happy entry.
Sometimes God's will doesn't involve the plans you think are best. When that happens, to be frank, it stinks... a lot. Thankfully, we are assured that HIS plan really is best, even while we're still going through the heartache of his grace being sufficient instead of our own plans being fulfilled.. which is weird because we shouldn't be feeling heartache, but joy. How awesome is it that God is SO great that just His grace is completely sufficient for us? Still... our minds trick us into thinking that our plans could be better, and it's disappointing (GOD IS NOT DISAPPOINTING, just the circumstances are disappointing.) I love how the Word always offers a hope, too. " 'For I know the plans I have for you', declares the Lord." Jeremiah 29:11 tells us that HE knows his plans. Well.. maybe I should stop being so vague and just tell what's going on.
I want to be healed. I want one of those Acts miracles in my CF. To breathe like I never have before, to have new and working lungs -- without having a transplant. Don't get me wrong, I am SOOOO thankful that God has provided transplant as a possible treatment for me. Really. Cancer patients can't get transplants, and I feel so terrible that they can't turn to that if they need it. But... I don't want to be so incredibly immune suppressant (sp?) the rest of my life. If I'm breathing, I want to be serving. And the way I long to serve, I wouldn't be able to do because of my lack of immunity. I want to go on mission trips. And I know, I can be a missionary here. But I want to go help build a home, or a church, or wells or something. I want to go into hospitals and pray over sick people. I want to nurse people, and help them. I semi-know what they're going through with IVs and all, and I know what hurts and what doesn't, and the anxiety related with everything, and the way to reduce said anxiety. I want to help the sick, not be the sick.
I've prayed before that I would be completely healed. I think I've prayed it wholeheartedly, totally expecting, like twice. Which is terrible because we are supposed to pray with expectation every time we pray. But it's almost like I'm not letting my guard down for it since God's answer was not right now the past times. Anyway, I prayed it last night. It was on my mind, and I tried my hardest to pray with the most expectation that I could. And I did. I fully expected to stand up after that prayer and walk out of my room with my new supernatural gift of breathing from Christ. I started to fantasize about what it'd be like. What would my reaction be? Would I jump and dance, now being able to with this new energy and breath? Would I just cry? Would I fall down in worship? Would I run out of my room and call my doctor? How awesome would it be to call my doctor and ask for an x-ray because I don't have CF anymore. She'd look at my last x-ray showing damaged, dysfunctional lungs, and then see this new x-ray with healthy beyond healthy lungs. How cool! But.. God's answer, like it was to Paul, was that his grace is sufficient for me. And that maybe, even though that's how I feel like I'd be serving (missions, nursing, etc) He wants me in a different mission field. So that's where I'm at right now. Trying to pray not to be healed, but instead for him to show me what he wants me to do. Trying to sincerely pray for his will, not mine. It's really hard. I can feel myself almost in a purposely apathetic mood because I don't want to be upset about it. Thank God for his love and grace that is holding onto me. I think it's so nice that I don't even want to like... face God... at the moment and he's just patiently waiting for me. It's not that I'm angry, I'm just still accepting his answer. So please pray for me, and please no one get the wrong idea here about God. God's plans are way better than I could even think -- remember the 31%?! He ALWAYS outdoes me! But, there's a time for everything, and this isn't my time to be healed yet.
He's SO nice, too, because I am breathing better. The past 2 weeks I've had easier breaths, and more energy. Like significantly noticeable. I don't have to do my therapy the very second I wake up just to breathe. I still have to do it, of course, but it's nice not to struggle so hard from the second I open my eyes.
Anyway, I felt like I should write about this.. and I didn't really want to. I started off the blog saying - this is going to be short.-- And typed not even a paragraph, but then God reminded of Jeremiah 29:11 -- and he used this entry, that I didn't want to type and wasn't going to expand on, to comfort me. Thanks Jesus <3
So.. please pray for me that I would have a heart for whatever Jesus wants me to, and to be able to serve in an environment that's safe and fulfilling. And that I would love God more. Thanks everyone and happy new year!
P.S. sorry if this was like.. a downer.
My God has bigger plans because God is love.
I want to be healed. I want one of those Acts miracles in my CF. To breathe like I never have before, to have new and working lungs -- without having a transplant. Don't get me wrong, I am SOOOO thankful that God has provided transplant as a possible treatment for me. Really. Cancer patients can't get transplants, and I feel so terrible that they can't turn to that if they need it. But... I don't want to be so incredibly immune suppressant (sp?) the rest of my life. If I'm breathing, I want to be serving. And the way I long to serve, I wouldn't be able to do because of my lack of immunity. I want to go on mission trips. And I know, I can be a missionary here. But I want to go help build a home, or a church, or wells or something. I want to go into hospitals and pray over sick people. I want to nurse people, and help them. I semi-know what they're going through with IVs and all, and I know what hurts and what doesn't, and the anxiety related with everything, and the way to reduce said anxiety. I want to help the sick, not be the sick.
I've prayed before that I would be completely healed. I think I've prayed it wholeheartedly, totally expecting, like twice. Which is terrible because we are supposed to pray with expectation every time we pray. But it's almost like I'm not letting my guard down for it since God's answer was not right now the past times. Anyway, I prayed it last night. It was on my mind, and I tried my hardest to pray with the most expectation that I could. And I did. I fully expected to stand up after that prayer and walk out of my room with my new supernatural gift of breathing from Christ. I started to fantasize about what it'd be like. What would my reaction be? Would I jump and dance, now being able to with this new energy and breath? Would I just cry? Would I fall down in worship? Would I run out of my room and call my doctor? How awesome would it be to call my doctor and ask for an x-ray because I don't have CF anymore. She'd look at my last x-ray showing damaged, dysfunctional lungs, and then see this new x-ray with healthy beyond healthy lungs. How cool! But.. God's answer, like it was to Paul, was that his grace is sufficient for me. And that maybe, even though that's how I feel like I'd be serving (missions, nursing, etc) He wants me in a different mission field. So that's where I'm at right now. Trying to pray not to be healed, but instead for him to show me what he wants me to do. Trying to sincerely pray for his will, not mine. It's really hard. I can feel myself almost in a purposely apathetic mood because I don't want to be upset about it. Thank God for his love and grace that is holding onto me. I think it's so nice that I don't even want to like... face God... at the moment and he's just patiently waiting for me. It's not that I'm angry, I'm just still accepting his answer. So please pray for me, and please no one get the wrong idea here about God. God's plans are way better than I could even think -- remember the 31%?! He ALWAYS outdoes me! But, there's a time for everything, and this isn't my time to be healed yet.
He's SO nice, too, because I am breathing better. The past 2 weeks I've had easier breaths, and more energy. Like significantly noticeable. I don't have to do my therapy the very second I wake up just to breathe. I still have to do it, of course, but it's nice not to struggle so hard from the second I open my eyes.
Anyway, I felt like I should write about this.. and I didn't really want to. I started off the blog saying - this is going to be short.-- And typed not even a paragraph, but then God reminded of Jeremiah 29:11 -- and he used this entry, that I didn't want to type and wasn't going to expand on, to comfort me. Thanks Jesus <3
So.. please pray for me that I would have a heart for whatever Jesus wants me to, and to be able to serve in an environment that's safe and fulfilling. And that I would love God more. Thanks everyone and happy new year!
P.S. sorry if this was like.. a downer.
My God has bigger plans because God is love.
Saturday, December 17, 2011
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.
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.
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://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.
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://
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.
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.
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.
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