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.
Saturday, December 17, 2011
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.
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.
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.
Saturday, October 29, 2011
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.
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.
Sunday, October 16, 2011
...
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.
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.
Saturday, October 1, 2011
crazy long poem.
"Take out your pen and paper", my professor said.
"Finish this sentence with as many things that come into your head."
The chalk glided across the board as we waited to see
Just what the tough sentence to finish would be.
We smiled when the words finally made their debut,
Complete "I am..." with what you perceive to be true.
It started off easy, I am born again.
Redeemed and saved, Jesus calls me his friend.
I am short certainly wasn't a surprise
Hopefully my light for God is as obvious as my size.
The list went on, our goal was to write at least 15 decriptions
Trying to be true to what we thought was an honest depicton
I found myself writing words that described my own war
Bringing revelation, which is exactly what this exercise is for.
I am a fighter. I am strong by the Spirit.
O God, give me direction, and ears to hear it.
I am perseverent. I will not give up.
O God, restore me when I want to, keep refilling my cup.
I am smart. I won't let my mind go to waste.
O God, only You keep me sound, come to my rescue with haste.
I am tired. My body doesn't work as it should.
O God, relieve me of my sadness, remind me You use this for good.
I am frustrated. In my lack of physical ability, I feel lazy.
O God, remind me of how you work in stillness; how there's purpose to even lillies and daisies.
I am joyful. My Jesus ransomed me!
He conquered death, and set me free!
I am blessed. I have everything I need.
And yet, I still can't wait until that day
When Jesus finally says "breathe."
How does a normal breath even feel?
I'd imagine too good to even be real.
That day when God says, "This trial is over. It's achieved my glory.
Now go breathe. My daughter, there's still more to this story."
"Run, dance and praise as you so desperately desire."
Lord, let me not forget who You are, but always lift you higher.
Forgive me for the "I ams" that don't reflect you
Forgive me for my selfishness that ignores a kingdom view.
But God, I just can't get this off of my mind.
I am so many things, not just one word can define.
Whether through miracles, medicines, or transplants,
you provide everything I'll be needing
So that one day I can fill in the blank...
I am... breathing.
I will breathe easily one day because God is love. <3
"Finish this sentence with as many things that come into your head."
The chalk glided across the board as we waited to see
Just what the tough sentence to finish would be.
We smiled when the words finally made their debut,
Complete "I am..." with what you perceive to be true.
It started off easy, I am born again.
Redeemed and saved, Jesus calls me his friend.
I am short certainly wasn't a surprise
Hopefully my light for God is as obvious as my size.
The list went on, our goal was to write at least 15 decriptions
Trying to be true to what we thought was an honest depicton
I found myself writing words that described my own war
Bringing revelation, which is exactly what this exercise is for.
I am a fighter. I am strong by the Spirit.
O God, give me direction, and ears to hear it.
I am perseverent. I will not give up.
O God, restore me when I want to, keep refilling my cup.
I am smart. I won't let my mind go to waste.
O God, only You keep me sound, come to my rescue with haste.
I am tired. My body doesn't work as it should.
O God, relieve me of my sadness, remind me You use this for good.
I am frustrated. In my lack of physical ability, I feel lazy.
O God, remind me of how you work in stillness; how there's purpose to even lillies and daisies.
I am joyful. My Jesus ransomed me!
He conquered death, and set me free!
I am blessed. I have everything I need.
And yet, I still can't wait until that day
When Jesus finally says "breathe."
How does a normal breath even feel?
I'd imagine too good to even be real.
That day when God says, "This trial is over. It's achieved my glory.
Now go breathe. My daughter, there's still more to this story."
"Run, dance and praise as you so desperately desire."
Lord, let me not forget who You are, but always lift you higher.
Forgive me for the "I ams" that don't reflect you
Forgive me for my selfishness that ignores a kingdom view.
But God, I just can't get this off of my mind.
I am so many things, not just one word can define.
Whether through miracles, medicines, or transplants,
you provide everything I'll be needing
So that one day I can fill in the blank...
I am... breathing.
I will breathe easily one day because God is love. <3
Monday, September 5, 2011
I usually like rollercoasters...
I usually like rollercoasters! In fact.. they are my favorite, however, my emotions being on a rollercoaster -- not so much fun.
I am SO happy that my lung function is up to 40% (thank You, God!) and with everything Jesus has pulled me through, and everything that He's still blessing me with, I should be jumping up and down shouting praises to His Name, but I'm not. I feel like a drop out.
My neighbor went to military school and I got a letter from him, and it completely made my day, if not whole weekend haha! That was such a gift to get that letter cause it was SO unexpected, I LOVE what he wrote and I've been praying for him every day -- please pray for him, too!
I had such a fun time with Johnny coming over the past nights, and then hanging out with everyone after church yesterday!
I went school shopping with my friend June, and really enjoyed it. And I am totally psyched that God is helping me take 2 on campus classes and one online class. I can't wait for the work!
My sisters and niece came over yesterday -- I still can't believe my niece is real.. She's SOOOO stinking cute -- and we get to keep her! Hahaha she's walking and talking and bahhh, just the greatest!
Christ is over-blessing me daily.. and yet I'm still in a slump.
I am trying really hard for my health. I know it's not out of my strength, but I am called to be responsible and do my part. I hate to admit, but I could have been more responsible in the past -- but I didn't want my disease to be my life. It never was before. It was always just a side thing.. but now.. I feel like it is.. at least for this time period.. I'm not working which relieves a lot of stress, but not getting up and going to work is just another reminder that I CAN'T get up and go to work. I'm on a schedule.. this pill at this time, that treatment at that time, this treatment has to be a certain amount of hours apart but it has to get done 3 times a day... I still need to be gaining weight -- and if any of you know me.. eating usually isn't my favorite activity. But, I've been forcing myself to eat more than ever. If I'm asking God to do His part, I need to do mine. And I've been trying so hard. Writing down everything I eat, blood sugars and insulin doses... Doing my night feeds which I hate... I've been making sure that I'm testing my blood sugar and eating 3 meals a day almost exactly 3 hours apart.. Doing all my treatments, and the past 2 days I've gone for a very short bike ride to try and start rebuilding my exercise tolerance, and my lung/all around body muscle back up. And that's where I get disappointed... I used to dance at least 6 hours a week in middle school and high school... I know it's been a long time since my dancing days, but I guess I just didn't realize how weak I'd gotten. My bike ride route was go up 3 blocks, turn down the third block, come down three blocks, turn down that block and be back at my house. I was so exhausted.. but the exhaustion almost made me feel good -- accomplished -- I knew that I was really trying and I was excited to see the results of when I could do that route and not be as tired, and even for when I would be able to expand the bike ride a little longer... Today I put my clothes away. Yep, I hung 4 shirts, and 6 pants, and was tired. I went out to the store with my sister and parents. We went to staples and I sat in the computer chair section the whole time. Then we went to home depot - and I didn't go in. Same thing with Carvel -- sat in the car. We came home and I watched a movie and cried cause I was so tired and unaccomplished today. I didn't go for my bike ride. I was too tired from sitting in staples, and sitting in the car. I didn't get to clean my room and get it all organized for school -- which I LOVE doing.. but I just can't. So .. my online class starts tomorrow and my room's a mess. I am completely beat even though I didn't even exercise today. And now it's on to my last therapy of the day.. and shower and night feed and bed. I'm hoping that I'll get to paint my nails.. but I doubt it.
So this is me. So complainy -- so full of blessings and all I'm dwelling on is the FEW bad things when God's given me so many great things.
We serve a truly PATIENT and LOVING Christ that He would put up with this. Not only put up with it.. but still walk with me.. I know this will get better and easier.. but it's hard not feeling the results of all the work I'm putting into this...
The road will get smoother because God is love.
I am SO happy that my lung function is up to 40% (thank You, God!) and with everything Jesus has pulled me through, and everything that He's still blessing me with, I should be jumping up and down shouting praises to His Name, but I'm not. I feel like a drop out.
My neighbor went to military school and I got a letter from him, and it completely made my day, if not whole weekend haha! That was such a gift to get that letter cause it was SO unexpected, I LOVE what he wrote and I've been praying for him every day -- please pray for him, too!
I had such a fun time with Johnny coming over the past nights, and then hanging out with everyone after church yesterday!
I went school shopping with my friend June, and really enjoyed it. And I am totally psyched that God is helping me take 2 on campus classes and one online class. I can't wait for the work!
My sisters and niece came over yesterday -- I still can't believe my niece is real.. She's SOOOO stinking cute -- and we get to keep her! Hahaha she's walking and talking and bahhh, just the greatest!
Christ is over-blessing me daily.. and yet I'm still in a slump.
I am trying really hard for my health. I know it's not out of my strength, but I am called to be responsible and do my part. I hate to admit, but I could have been more responsible in the past -- but I didn't want my disease to be my life. It never was before. It was always just a side thing.. but now.. I feel like it is.. at least for this time period.. I'm not working which relieves a lot of stress, but not getting up and going to work is just another reminder that I CAN'T get up and go to work. I'm on a schedule.. this pill at this time, that treatment at that time, this treatment has to be a certain amount of hours apart but it has to get done 3 times a day... I still need to be gaining weight -- and if any of you know me.. eating usually isn't my favorite activity. But, I've been forcing myself to eat more than ever. If I'm asking God to do His part, I need to do mine. And I've been trying so hard. Writing down everything I eat, blood sugars and insulin doses... Doing my night feeds which I hate... I've been making sure that I'm testing my blood sugar and eating 3 meals a day almost exactly 3 hours apart.. Doing all my treatments, and the past 2 days I've gone for a very short bike ride to try and start rebuilding my exercise tolerance, and my lung/all around body muscle back up. And that's where I get disappointed... I used to dance at least 6 hours a week in middle school and high school... I know it's been a long time since my dancing days, but I guess I just didn't realize how weak I'd gotten. My bike ride route was go up 3 blocks, turn down the third block, come down three blocks, turn down that block and be back at my house. I was so exhausted.. but the exhaustion almost made me feel good -- accomplished -- I knew that I was really trying and I was excited to see the results of when I could do that route and not be as tired, and even for when I would be able to expand the bike ride a little longer... Today I put my clothes away. Yep, I hung 4 shirts, and 6 pants, and was tired. I went out to the store with my sister and parents. We went to staples and I sat in the computer chair section the whole time. Then we went to home depot - and I didn't go in. Same thing with Carvel -- sat in the car. We came home and I watched a movie and cried cause I was so tired and unaccomplished today. I didn't go for my bike ride. I was too tired from sitting in staples, and sitting in the car. I didn't get to clean my room and get it all organized for school -- which I LOVE doing.. but I just can't. So .. my online class starts tomorrow and my room's a mess. I am completely beat even though I didn't even exercise today. And now it's on to my last therapy of the day.. and shower and night feed and bed. I'm hoping that I'll get to paint my nails.. but I doubt it.
So this is me. So complainy -- so full of blessings and all I'm dwelling on is the FEW bad things when God's given me so many great things.
We serve a truly PATIENT and LOVING Christ that He would put up with this. Not only put up with it.. but still walk with me.. I know this will get better and easier.. but it's hard not feeling the results of all the work I'm putting into this...
The road will get smoother because God is love.
Tuesday, August 30, 2011
Where to even start...
I've been meaning to update but it's been busy! And when I have time, I'm pretty tired and just want to take a nap haha. Anyway.. to pick up from where I left off --
God is awesome. Through a mistake by nurse, God revealed to us the way to sustain the IV in my left hand less painfully!! How awesome! Here's that short story (well.. I'll try to make it short :P )
So of course I was terrified and very stressed about the fragile, painful, but so necessary IV in my left hand. We wanted to make sure we used it for the antibiotics, and didn't tire it out by running fluids in it or something -- we weren't sure if that could actually happen but it seemed possible. In trying to avoid as much pressure as possible on the IV, they were doing a saline flush after my meds through an IV drip, rather than a handheld flush. That helped, however, they still had to manually push a flush before the antibiotics were started each time. I was ok with this (even though it hurt SO BAD) because, like I said, we wanted to IV to last, and weren't sure if it could handle much more than just the antibiotics. Anyway, one night, after explaining everything over once again to our new night nurse, she said she was going to let the flush drip in like it should, and come back and turn it off after I had received the sufficient amount of saline. I felt comfortable, and was completely exhausted anyway, and fell asleep. I woke up to my IV machine beeping a few HOURS later only to find that the saline bag, which was full before I had fallen asleep and should have still been full since a flush is only 5ccs of saline, empty. Yes, that's right, the bag was empty. The nurse never came back to turn it off, and now I had gotten that WHOLE bag in my FRAGILE IV! I was so upset. I went to the bathroom and .. out of all the places for God to confront me -- He did so there. hahah! When I saw the empty bag, my mind was made up. I was staying up the rest of the night because OBVIOUSLY I couldn't trust my care in the hands of this nurse. What if this IV had blown?! What if now.. 3am .. when I'm still sooo tired, they had to take it out and try to put another IV in when this last IV was a true miracle? My mom was asleep, and I certainly wasn't going to wake her up -- she needed rest too. Plus, I was still in the bathroom because I was so angry and venting to God about this nurse. All I kept thinking was -- UGH God, I can't believe she did that. Now I have to stay up. What if the IV had blown?! --------
But it didn't.
Wait.. what? Yep, there was God answering me back just as he did Job (just.. not audibly haha ).
My Dear One,
Don't you trust me? The IV didn't blow. In the past, I have used other things and other people to help and protect you. Medicines to improve your health, your mother and the gifts I've given her to guide you and watch over you so you get the right care. But do you doubt that I, MYSELF, can protect you without using someone else? Do you think my power can only work if I pair it up with something else? Can't I save you with MY SPIRIT ALONE?
Woof. There I was.. in the bathroom.. being confronted. It's true. I know my medicines come from God. I know my mother's wisdom and love come from the Holy Spirit. I know that God protects me from the unseen -- how many things has he fought off without me even knowing? But when I have I seen HIS HAND ALONE move? Just because in the past he's chosen other routes, doesn't make his power any less.. well.. powerful.
That night was so frustrating, yet comforting at the same time.. God showed me that HE ALONE protected me. That IV held up for that whole bag. And yet, God gave me the discernment later on for when the nurse made another mistake (but I don't need to go into that.) and showed me that HE WILL and DOES protect me, and he still gives me discernment of when I need to be paying attention to help protect myself as well. AND not only that, now we knew that my IV could withstand all that fluid -- and my daytime nurse, by the Grace of God, came up with the solution to have the fluids constantly running -- all day except for when my antibiotics were infusing, that way there were no manual flushes at all -- and no pain for the most part!!! Praise God!!
So anyway.. now onto bigger and more awesome things Jesus gave to me.
The man next door had a horrible night. I'm not sure what was wrong with him.. perhaps paranoid skytzophrenia (i know as a psych major i should know how to spell that.. but i don't.). Anyway, this poor man had such real delusions. He was screaming in terror the whole night with only short moments, maybe 3 minutes each time - if that, of relief.
"Help!! They're trying to murder me!!" I felt awful so I started praying. And then I got a little frustrated. If I were the Apostle Paul.. I would have walked right into that room following the Holy Spirit, being fed up with whatever demon or illness was tormenting this man, and just as if I were telling my sister to stop talking, I would cast that demon/rebuke that illness in the name of Jesus and it would come under the authority of Christ and leave that man alone!
But.. that's not what God was telling me to do. What happened to the power the Spirit had in the book of Acts? Why can't I go in there and use the authority Christ TELLS ME I have? Why is it that in Acts, that would be a normal occurrance but now, it would be "radical" or "mysterious" for the Spirit to move like that? God.. if you're the same yesterday, today and forever.. why aren't you leading me to work under the power of your name? So many questions.. but in the end, I submit to God, and he wasn't saying go.
The next morning I was scheduled to get another heart ultrasound (actually called an echocardiogram). We took out the IV that waas in my port because the needle had to come out that day anyway (it has to be changed every week during IV treatments) and the tech felt that we would get a better picture if they weren't restricted from that area of my chest. So.. they did the test. Of course, we have no idea what anything means, and the tech isn't allowed to tell us anything regarding the results. Next thing you know, a wheelchair is at my room to bring my downstairs to radiology to get a VQ scan done. It was an EXTREMELY busy morning lol. Anyway.. a VQ scan shows how well my heart and lungs are working together, and how well each lobe of my lung is being oxygenated by my heart. We were about to go downstairs for the scan, when the nurse came in and unhooked my blood thinner. We asked why, and she said the order was discontinued. Hmm.. Well.. earlier that morning my doctor had said she was going to try to get me injections of blood thinners, that way we could go home. So.. we went downstairs and I said to my mom -- oh pray that it's so we can be on injection and go home! Meanwhile, I'm seeing all these sick people laying in a bed, or sitting in a wheel chair. I want to go over and have the Spirit use me to heal them. I want to live in Acts. And as I was thinking about all those questions again .. it dawned on me -- I'm praying for blood thinner... why am I not just praying for no blood clot? If I'm asking and desiring the Spirit to move on behalf of these other people, shouldn't I first have some sort of faith that He can move on my behalf? Even if his answer was no, shouldn't I at least ask? So I did. I asked, and I told my mom that's what I'm praying for -- we go back upstairs after this scan and hear -- there's no blood clot. Even though I was trying to pray with expectation, I can't say I wholly believed that was going to happen. I don't mean to sound pessimistic, but so far, God has given me the gift of long suffering, and although He certainly has given me mighty, mighty victories, a total healing hasn't been one, and when it comes to things like this, the victories are usually that He pulls me through with new, glorious revelations of Himself AFTER I go through. Praise Him for that!! But that is probably why I doubted a healing of the blood clot. Sorry, Lord.
The scan was cool. The machine was called "The E. Cam" which was funny and above the machine where I lay was a picture of a rainbow -- just like God to remind me He's faithful to his promises. I had to breathe in this gas stuff.. and then breathe in a mask that felt like it had limited air -- very hard to breathe in that. It only last like 9 minutes or something and then they came and put something in my IV (which Praise God again because they could use the IV from my right hand and not have to put in a third IV!). Then I just lay there as the machine takes pictures of my chest.. and then I was done! Back upstairs we went!
After finally getting out of the wheelchair and into my bed, my phone rang.
"Emily?"
"Yea.."
"Hi, it's Dr. DiMango. Has Dr. Engle called you with the results of this mornings echo?"
"No, he hasn't"
"Oh .......... there's no blood clot."
.................
Praise You God, My Father, My Protector, Redeemer, Healer, Lover, SPIRIT THAT WAS ALIVE IN ACTS AND STILL IS TODAY <3
---------------
I almost dropped the phone. Here everything was going downhill and fast because of this serious and potentially fatal blood clot.. And here I was asking God why he doesn't move like he used to.. And here he was telling me -- But my beloved... I still do.
I can't even say anything but Praise you <3
It was .. incredible. And then the good news just kept coming. There's no blood clot -- what they thought was a blood clot is actually just fibrous tissue.. almost like scar tissue but not.. it occurs usually on pace makers but can happen on ports as well..
we can use my port again!!!!!!!! it's completely safe and i can go HOME on IVS using my PORT!!
all the stress of if my iv blows is gone.
i don't need to be on blood thinners. not IV and not injection.
we can start my chest therapy again!!!
we can go home the next day!!!!
we can take my right hand IV out!!!
and if my left one blows, we just hook up my port early -- but if we can keep the left hand going for just a few more doses, we can pull that IV and then I have 6 hours to be IV free and shower -- no port and no peripheral IVS.
God.. when you give.. you don't give minimum.. you exceed our thoughts every time.
We prayed for my peripheral IVs to last three days. We prayed EVERY dose of antibiotice I got .. "God.. just let us get through this dose." every time.
We prayed for three days. We got four.
JESUS <3
My vocabulary fails me in expressing his goodness.
So.. I got my last hospital dose of antibiotic.. and am sitting on the bed, more than ready to come home when I get really dizzy. "Oh no", I thought. "I'm SOO CLOSE to going home, but I can't keep quiet about this. I've never felt like this before..." And then my mom looks at me and says "Do you feel that?" HAAHAH!! The breathe of relief that came out of my mouth was like a rushing wind! We looked over at our water bottles, which were shaking, and my IV tubing hanging on the pole, swinging back and forth. That's right ladies and gentleman. We went out of the hospital with a great victory and .. and earthquake! HAAHA!! God cracks me up!!!
This hospital stay was insane hahaha!! To summarize :
I go in for a doctor appointment, and don't come home.
What started out as a harmless test, showed that I have a blood clot.
My dad gets hit by a car in the downstairs parking lot.
I'm in a room upstairs, my dads in a room in the ER.
My dad's ok because God protected him with water bottles!!
I don't have a blood clot!!
We're leaving and have an earthquake!!
HAHAH!!!
Anyway.. we get home.. and of course had our ups and downs -- I got a fever, felt sicker, got better, etc. Not to forget hurricane Irene. The preparation took a lot but Praise God that we didn't get hit! Lots of rain and winds, but our basement only got a little wet, no flooding, and our power went out for literally 2 seconds before coming back on fine.
Today I went to the doctor for my second injection of xolair and they asked if i wanted to do a breathing test. I go into the little room and get weighed, then do the test. Here are the results.
My weight is up from 89 lbs to 92.8 lbs
My lung function is up from 33% to 40%!!!!!!!!!!!! Thank you Jesus!!!
I still have a lot to do to try and build up my lungs and my body is still too weak and tired too easily. I have a journey still in front of me as I continue to battle Cystic Fibrosis.
But I am sitting here typing this, having just finished my last IV dose, with no IV in my right now, and no IV being put back in anytime soon, with a lung function of 40%, and no blood clot. To say I'm in awe would be the understatement of the year.
Thank you for your prayers everyone. God is.. beyond anything I can describe.
"Take these hands and lift them up, for I have not the strength to praise you NEAR enough."
Psalm 4:6-8
"6 Many people say, “Who will show us better times?”
Let your face smile on us, Lord.
7 You have given me greater joy
than those who have abundant harvests of grain and new wine.
8 In peace I will lie down and sleep,
for you alone, O Lord, will keep me safe."
I'm home because God is love.
God is awesome. Through a mistake by nurse, God revealed to us the way to sustain the IV in my left hand less painfully!! How awesome! Here's that short story (well.. I'll try to make it short :P )
So of course I was terrified and very stressed about the fragile, painful, but so necessary IV in my left hand. We wanted to make sure we used it for the antibiotics, and didn't tire it out by running fluids in it or something -- we weren't sure if that could actually happen but it seemed possible. In trying to avoid as much pressure as possible on the IV, they were doing a saline flush after my meds through an IV drip, rather than a handheld flush. That helped, however, they still had to manually push a flush before the antibiotics were started each time. I was ok with this (even though it hurt SO BAD) because, like I said, we wanted to IV to last, and weren't sure if it could handle much more than just the antibiotics. Anyway, one night, after explaining everything over once again to our new night nurse, she said she was going to let the flush drip in like it should, and come back and turn it off after I had received the sufficient amount of saline. I felt comfortable, and was completely exhausted anyway, and fell asleep. I woke up to my IV machine beeping a few HOURS later only to find that the saline bag, which was full before I had fallen asleep and should have still been full since a flush is only 5ccs of saline, empty. Yes, that's right, the bag was empty. The nurse never came back to turn it off, and now I had gotten that WHOLE bag in my FRAGILE IV! I was so upset. I went to the bathroom and .. out of all the places for God to confront me -- He did so there. hahah! When I saw the empty bag, my mind was made up. I was staying up the rest of the night because OBVIOUSLY I couldn't trust my care in the hands of this nurse. What if this IV had blown?! What if now.. 3am .. when I'm still sooo tired, they had to take it out and try to put another IV in when this last IV was a true miracle? My mom was asleep, and I certainly wasn't going to wake her up -- she needed rest too. Plus, I was still in the bathroom because I was so angry and venting to God about this nurse. All I kept thinking was -- UGH God, I can't believe she did that. Now I have to stay up. What if the IV had blown?! --------
But it didn't.
Wait.. what? Yep, there was God answering me back just as he did Job (just.. not audibly haha ).
My Dear One,
Don't you trust me? The IV didn't blow. In the past, I have used other things and other people to help and protect you. Medicines to improve your health, your mother and the gifts I've given her to guide you and watch over you so you get the right care. But do you doubt that I, MYSELF, can protect you without using someone else? Do you think my power can only work if I pair it up with something else? Can't I save you with MY SPIRIT ALONE?
Woof. There I was.. in the bathroom.. being confronted. It's true. I know my medicines come from God. I know my mother's wisdom and love come from the Holy Spirit. I know that God protects me from the unseen -- how many things has he fought off without me even knowing? But when I have I seen HIS HAND ALONE move? Just because in the past he's chosen other routes, doesn't make his power any less.. well.. powerful.
That night was so frustrating, yet comforting at the same time.. God showed me that HE ALONE protected me. That IV held up for that whole bag. And yet, God gave me the discernment later on for when the nurse made another mistake (but I don't need to go into that.) and showed me that HE WILL and DOES protect me, and he still gives me discernment of when I need to be paying attention to help protect myself as well. AND not only that, now we knew that my IV could withstand all that fluid -- and my daytime nurse, by the Grace of God, came up with the solution to have the fluids constantly running -- all day except for when my antibiotics were infusing, that way there were no manual flushes at all -- and no pain for the most part!!! Praise God!!
So anyway.. now onto bigger and more awesome things Jesus gave to me.
The man next door had a horrible night. I'm not sure what was wrong with him.. perhaps paranoid skytzophrenia (i know as a psych major i should know how to spell that.. but i don't.). Anyway, this poor man had such real delusions. He was screaming in terror the whole night with only short moments, maybe 3 minutes each time - if that, of relief.
"Help!! They're trying to murder me!!" I felt awful so I started praying. And then I got a little frustrated. If I were the Apostle Paul.. I would have walked right into that room following the Holy Spirit, being fed up with whatever demon or illness was tormenting this man, and just as if I were telling my sister to stop talking, I would cast that demon/rebuke that illness in the name of Jesus and it would come under the authority of Christ and leave that man alone!
But.. that's not what God was telling me to do. What happened to the power the Spirit had in the book of Acts? Why can't I go in there and use the authority Christ TELLS ME I have? Why is it that in Acts, that would be a normal occurrance but now, it would be "radical" or "mysterious" for the Spirit to move like that? God.. if you're the same yesterday, today and forever.. why aren't you leading me to work under the power of your name? So many questions.. but in the end, I submit to God, and he wasn't saying go.
The next morning I was scheduled to get another heart ultrasound (actually called an echocardiogram). We took out the IV that waas in my port because the needle had to come out that day anyway (it has to be changed every week during IV treatments) and the tech felt that we would get a better picture if they weren't restricted from that area of my chest. So.. they did the test. Of course, we have no idea what anything means, and the tech isn't allowed to tell us anything regarding the results. Next thing you know, a wheelchair is at my room to bring my downstairs to radiology to get a VQ scan done. It was an EXTREMELY busy morning lol. Anyway.. a VQ scan shows how well my heart and lungs are working together, and how well each lobe of my lung is being oxygenated by my heart. We were about to go downstairs for the scan, when the nurse came in and unhooked my blood thinner. We asked why, and she said the order was discontinued. Hmm.. Well.. earlier that morning my doctor had said she was going to try to get me injections of blood thinners, that way we could go home. So.. we went downstairs and I said to my mom -- oh pray that it's so we can be on injection and go home! Meanwhile, I'm seeing all these sick people laying in a bed, or sitting in a wheel chair. I want to go over and have the Spirit use me to heal them. I want to live in Acts. And as I was thinking about all those questions again .. it dawned on me -- I'm praying for blood thinner... why am I not just praying for no blood clot? If I'm asking and desiring the Spirit to move on behalf of these other people, shouldn't I first have some sort of faith that He can move on my behalf? Even if his answer was no, shouldn't I at least ask? So I did. I asked, and I told my mom that's what I'm praying for -- we go back upstairs after this scan and hear -- there's no blood clot. Even though I was trying to pray with expectation, I can't say I wholly believed that was going to happen. I don't mean to sound pessimistic, but so far, God has given me the gift of long suffering, and although He certainly has given me mighty, mighty victories, a total healing hasn't been one, and when it comes to things like this, the victories are usually that He pulls me through with new, glorious revelations of Himself AFTER I go through. Praise Him for that!! But that is probably why I doubted a healing of the blood clot. Sorry, Lord.
The scan was cool. The machine was called "The E. Cam" which was funny and above the machine where I lay was a picture of a rainbow -- just like God to remind me He's faithful to his promises. I had to breathe in this gas stuff.. and then breathe in a mask that felt like it had limited air -- very hard to breathe in that. It only last like 9 minutes or something and then they came and put something in my IV (which Praise God again because they could use the IV from my right hand and not have to put in a third IV!). Then I just lay there as the machine takes pictures of my chest.. and then I was done! Back upstairs we went!
After finally getting out of the wheelchair and into my bed, my phone rang.
"Emily?"
"Yea.."
"Hi, it's Dr. DiMango. Has Dr. Engle called you with the results of this mornings echo?"
"No, he hasn't"
"Oh .......... there's no blood clot."
.................
Praise You God, My Father, My Protector, Redeemer, Healer, Lover, SPIRIT THAT WAS ALIVE IN ACTS AND STILL IS TODAY <3
---------------
I almost dropped the phone. Here everything was going downhill and fast because of this serious and potentially fatal blood clot.. And here I was asking God why he doesn't move like he used to.. And here he was telling me -- But my beloved... I still do.
I can't even say anything but Praise you <3
It was .. incredible. And then the good news just kept coming. There's no blood clot -- what they thought was a blood clot is actually just fibrous tissue.. almost like scar tissue but not.. it occurs usually on pace makers but can happen on ports as well..
we can use my port again!!!!!!!! it's completely safe and i can go HOME on IVS using my PORT!!
all the stress of if my iv blows is gone.
i don't need to be on blood thinners. not IV and not injection.
we can start my chest therapy again!!!
we can go home the next day!!!!
we can take my right hand IV out!!!
and if my left one blows, we just hook up my port early -- but if we can keep the left hand going for just a few more doses, we can pull that IV and then I have 6 hours to be IV free and shower -- no port and no peripheral IVS.
God.. when you give.. you don't give minimum.. you exceed our thoughts every time.
We prayed for my peripheral IVs to last three days. We prayed EVERY dose of antibiotice I got .. "God.. just let us get through this dose." every time.
We prayed for three days. We got four.
JESUS <3
My vocabulary fails me in expressing his goodness.
So.. I got my last hospital dose of antibiotic.. and am sitting on the bed, more than ready to come home when I get really dizzy. "Oh no", I thought. "I'm SOO CLOSE to going home, but I can't keep quiet about this. I've never felt like this before..." And then my mom looks at me and says "Do you feel that?" HAAHAH!! The breathe of relief that came out of my mouth was like a rushing wind! We looked over at our water bottles, which were shaking, and my IV tubing hanging on the pole, swinging back and forth. That's right ladies and gentleman. We went out of the hospital with a great victory and .. and earthquake! HAAHA!! God cracks me up!!!
This hospital stay was insane hahaha!! To summarize :
I go in for a doctor appointment, and don't come home.
What started out as a harmless test, showed that I have a blood clot.
My dad gets hit by a car in the downstairs parking lot.
I'm in a room upstairs, my dads in a room in the ER.
My dad's ok because God protected him with water bottles!!
I don't have a blood clot!!
We're leaving and have an earthquake!!
HAHAH!!!
Anyway.. we get home.. and of course had our ups and downs -- I got a fever, felt sicker, got better, etc. Not to forget hurricane Irene. The preparation took a lot but Praise God that we didn't get hit! Lots of rain and winds, but our basement only got a little wet, no flooding, and our power went out for literally 2 seconds before coming back on fine.
Today I went to the doctor for my second injection of xolair and they asked if i wanted to do a breathing test. I go into the little room and get weighed, then do the test. Here are the results.
My weight is up from 89 lbs to 92.8 lbs
My lung function is up from 33% to 40%!!!!!!!!!!!! Thank you Jesus!!!
I still have a lot to do to try and build up my lungs and my body is still too weak and tired too easily. I have a journey still in front of me as I continue to battle Cystic Fibrosis.
But I am sitting here typing this, having just finished my last IV dose, with no IV in my right now, and no IV being put back in anytime soon, with a lung function of 40%, and no blood clot. To say I'm in awe would be the understatement of the year.
Thank you for your prayers everyone. God is.. beyond anything I can describe.
"Take these hands and lift them up, for I have not the strength to praise you NEAR enough."
Psalm 4:6-8
"6 Many people say, “Who will show us better times?”
Let your face smile on us, Lord.
7 You have given me greater joy
than those who have abundant harvests of grain and new wine.
8 In peace I will lie down and sleep,
for you alone, O Lord, will keep me safe."
I'm home because God is love.
Saturday, August 20, 2011
Oh What A Night
just a forewarning -- this blog is not going to be grammatically correct lol i know i have typos on my other ones i've been too lazy to fix, but i'm not even going to try with this one (with the exception of God's names) because it's hard to capitalize with the ivs in my hands, and i dont feel like taking long to type this just to get in the capitals. soo... for those grammar perfectionists out there - proceed with caution.
so before i get into all that went on last night, i want to tell about how nice God is. i dont want his mercies to be forgotten or blanketed by the attacks of the storm. so.. like i said last night, the hearing protection was AWESOME. later yesterday, after the hearing test, i got an echocardiogram (not sure if i spelled that correctly), but anyway it's basically an ultra sound but on your heart. it..was..awesome! i know everyone says how the heart never stops working but i didnt really grasp that. it was so crazy to see my heart pumping CONSTANTLY and all the valves and parts! kind of.. for lack of better word .. gross .. but so beautiful at the same time. i really cant explain what it was like to see how much your heart beats, and to think -- God is the one pumping EVERY beat - blew my mind. if that was a job, whoever was doing it would be completely completely overwhelmed, but God isn't. It blows my mind how God works.. i really can't explain it.. we don't even know how hard our hearts work, but God does. God is doing the work in our hearts, and every other part of our body that we do and don't realize is working. and on top of just watching it on the screen, the woman explained the different valves and blood flows... what a genius God we serve!
the day was hectic because the hearing test delayed therapy, which delayed breakfast, which delayed insulins.. and everything is on a timed schedule so we were scrambling to make up for lost time. i didnt sleep well the night before and tried to get a nap in, but doctors were in and out and between everything, i didnt get to. i DID , however, get my first injection of xolair!! xolair is a drug used on asthma thats now in a trial for helping with the fungus that is causing me so many problems. they think this cf exacerbation is from the fugnus, and feel my overall decline is from it as well. anyway, the xolair might help.. and theres been some confusion about it between my doctors of who can get it and who cant because it's no a drug that's easy to order, but thank God - my insurance approves everything i need for my cf. so that was exciting to start andddddd God just keeps giving! We received a call shortly after from my doctor that the fungus test BEFORE i got the xolair was down to 977! The lower, the better. i came into the hosp at 1400. also, very rarely the xolair can have extreme allergic reactions. so we had the epi-pen ready, and prayed... and nooo reaction!
then.. i had a very blessed afternoon! my friend since kindergarten/sister in Christ came to visit me along with her boyfriend, and our friend Melissa!! It was such a blessing to be able to sit and talk and laugh! It was so generous for them to come and stay so long, too. AND they brought me balloons, a joke book and a little stuffed animal (so cute!)! Thanks guys!! It was a busy, but good day.
But then came the night.
The echocardiogram not only showed us how hard working and beautifully glorifying to the Lord that organ is, it also showed us that there is a blood clot on the cath IN my heart.
My port is the permanent iv that i have in my chest. the tubing (cathiter.. aka cath) goes right into my heart. so it was cool to see it flapping around in there yesterday, however, having a blood clot IN my heart is not good.
I originally didn't think it was THAT big of a deal.. but i'm learning differently.
The doctors expressed to us that if the clot dislodges it has potential to lodge somewhere else, causing a pulmonary embelism (sp?) which can be fatal. this is not where i am right now... but precautions need to be taken to prevent this. again --- not happening right now, its just a possobility that my doctors are aware of and therefore safeguarding me from. please pray that doesnt happen.
also, there was debate about what to do with the port last night. the definite plan was (and is) to run blood thinners through IV to prevent the clot from becoming bigger. most blood clots are reabsorbed by the body, which we are hoping/praying will happen. the controversial part was that some doctors felt the thinners should be run through the port itself, and others were completely against that.
If we run anything through the port, the fluids might push off the clot, putting me at risk for embelism. However, if we stopped all use of the port, the entire porticath line (it goes from my mid chest veins, to my neck veins and winds down into my heart) would be compromised. 5ccs of blood thinner before you stop using the port for an amount of time is the said requirement for maintaining the portline and keeping it unclogged for your next use. So.. if we cant run ANYTHING through it.. i could lose my port.
So.. we could run it through the port, or we could stop the use of the port, and put in two peripheral IVs - one in each hand.
It was a very emotional night. I was extremely bipolar - praying and standing on God's promises, and then crying. Then praying, then crying. our final decision was to very slowly push 5 ccs of blood thinner through the port to preserve it, and then put in the two peripheral ivs.
now i don't mean to sound dumb, but i havent had a peripheral in a long time, and the insertion, although its nothing, was making me nervous.
so, the first iv was put in my right hand. it went well. the nurse got it in successfully the first time. the second iv, however, didnt go quite as well. I have small veins.. but apparently the veins on my left side are really small. The first stick, it wouldn't insert because the vein was too small. The second try -- the iv inserted, but then blew, which usually means that the vein got punctured, and then swells (blows) up. My hand turned black and blue and swelled very quickly. Obviously that iv didn't work out. While we were pressing a cold soda can on the area to stop the swelling (hahaha), the nurse looked at the other veins in that hand, and in my arm. She didnt feel she would be able to get an iv inserted into the left arm or hand. she was willing to try, but still felt it would be unsuccessful. The nurses told us we could have a doctor try - ssometimes they are good at it and sometimes not so good. We elected to try and have a doc do it, although it'd still be hard because of my small veins. The doctor who came in is one i like! I met him the other night when we were having complications with my blood sugars, and he came in and gave us our options. 1) we could try for an iv in the left arm/hand 2) we could put an iv in my foot -- but then i cant walk 3) an iv in the neck ( TOTALLY skeeved me out!) or 4) we could try to run the blood thinner through the port - if we have to do that we will, but its trying to be avoided.
So we tried for a left hand iv and praise God - he gave guidance of that doctors hands, and that little needle to go in! it inserted! pray it lasts, because its in such a small vein (i'm used to small things.. and i was even surorised how small the vein was) and its in between my knuckle area, so its very fragile. also, because the vein is so small, they had to use an extra small needle, which can only handle a certain amount of pressure and infusion without blowing.
When the IVs were going in.. i was praying. desperately. I was anxious about the pain, about getting a good working line put in, and considering i was already an emotional bomb, every little thing brought tears back to my eyes. And as i was praying, the Lord reminded me of a verse i read two nights before.
Philippians 1:29 "For you have been given not only the privilege of trusting in Christ but also the privilege of suffering for him."
PRIVILEGE! Not job.. not burden.. PRIVILEGE! when they were poking my hands, all i could think of was the ivs going through the hands - like the nails in Jesus. my Jesus can more than relate the this small pain. All i could think during insertion was -- thank you for the scars, Lord <3
I have the privilege of having my hands poked because my Saviour had his pierced for me.
Crazy.
So.. last night was rough.. i didn't sleep much at all -- neither did my parents, who both stayed last night. This morning, as they were running the infusions into the left hand iv, it hurt. I could feel the pain pulsating in my vein - it was driving me nuts. And just fyi, i used to get peripheral ivs when i was younger before i got the port, so i know about them. i know what it feels like when theyre starting to blow - and this morning, that's what it felt like. of course, my anxiety probably didnt help. i was praying and singing songs to God in my head, and the Spirit just gave me such a nice prayer. I asked God to hold open my vein -- spread the walls of my vein and not allow them to collapse, hold them open with his very hands. As i was singing in my head, i also asked that the pain stop because i was just so done. I was so tired, and trying to sleep, but couldnt because the pain. i was so emotionally tired, that i couldn't even be frustrated about this, just sad. and i continued to worship, not even a second later, for real, the pain was gone. GONE. Jesus swept over my hand and healed the pain --- he held my veins open like he held the walls of the red sea open. He healed my pain.
MY JESUS BROUGHT ME RELIEF.
I cant even express how wonderful Jesus is. That word relief means so much when you just can't find any. But i found it. Jesus. <3
Today has been a relief day. It's very stressful with the ivs, because they could stop working at any time. They are painful at times, and the stress of the clot has brought up complications such as i'm not allowed to do my chest therapy - which is a necessity for airway clearance - because theyre afraid any kind of chest compression could dislodge the clot into my lung. What a blessing that has been today! No therapy made so much time in my day, i was even able to take a nap! Furthermore, i have an intestinal infection, and it was getting kind of bad. We thought it was no big deal, however, the doctor informed us that .. just like everything else in the world lol... if this remains untreated or worsens to a degree it could lead to surgery or be fatal. today though, we have seen a drastic improvement from yesterday in this area! it is still bad, but so much better than the previous days! Thank you God for using the medications! That's pretty much it for today i think. for anyone who's actually reading this novel, i hope this is a testimony of God's incredible love. I hope he speaks through it and thanks for reading and praying!
I am not privileged, not suffering, because God is love.
I have two working ivs because God is love.
Jesus brings me relief because God is love.
I am typing this.. because God is love.
PS -- please pray for alyssa sabo - she is a young woman with a mighty testimony and although God has brought her through SO MUCH, she still has quite a journey ahead of her and much glory to bring to Jesus' name! http://www.facebook.com/#!/event.php?eid=250827721601132
so before i get into all that went on last night, i want to tell about how nice God is. i dont want his mercies to be forgotten or blanketed by the attacks of the storm. so.. like i said last night, the hearing protection was AWESOME. later yesterday, after the hearing test, i got an echocardiogram (not sure if i spelled that correctly), but anyway it's basically an ultra sound but on your heart. it..was..awesome! i know everyone says how the heart never stops working but i didnt really grasp that. it was so crazy to see my heart pumping CONSTANTLY and all the valves and parts! kind of.. for lack of better word .. gross .. but so beautiful at the same time. i really cant explain what it was like to see how much your heart beats, and to think -- God is the one pumping EVERY beat - blew my mind. if that was a job, whoever was doing it would be completely completely overwhelmed, but God isn't. It blows my mind how God works.. i really can't explain it.. we don't even know how hard our hearts work, but God does. God is doing the work in our hearts, and every other part of our body that we do and don't realize is working. and on top of just watching it on the screen, the woman explained the different valves and blood flows... what a genius God we serve!
the day was hectic because the hearing test delayed therapy, which delayed breakfast, which delayed insulins.. and everything is on a timed schedule so we were scrambling to make up for lost time. i didnt sleep well the night before and tried to get a nap in, but doctors were in and out and between everything, i didnt get to. i DID , however, get my first injection of xolair!! xolair is a drug used on asthma thats now in a trial for helping with the fungus that is causing me so many problems. they think this cf exacerbation is from the fugnus, and feel my overall decline is from it as well. anyway, the xolair might help.. and theres been some confusion about it between my doctors of who can get it and who cant because it's no a drug that's easy to order, but thank God - my insurance approves everything i need for my cf. so that was exciting to start andddddd God just keeps giving! We received a call shortly after from my doctor that the fungus test BEFORE i got the xolair was down to 977! The lower, the better. i came into the hosp at 1400. also, very rarely the xolair can have extreme allergic reactions. so we had the epi-pen ready, and prayed... and nooo reaction!
then.. i had a very blessed afternoon! my friend since kindergarten/sister in Christ came to visit me along with her boyfriend, and our friend Melissa!! It was such a blessing to be able to sit and talk and laugh! It was so generous for them to come and stay so long, too. AND they brought me balloons, a joke book and a little stuffed animal (so cute!)! Thanks guys!! It was a busy, but good day.
But then came the night.
The echocardiogram not only showed us how hard working and beautifully glorifying to the Lord that organ is, it also showed us that there is a blood clot on the cath IN my heart.
My port is the permanent iv that i have in my chest. the tubing (cathiter.. aka cath) goes right into my heart. so it was cool to see it flapping around in there yesterday, however, having a blood clot IN my heart is not good.
I originally didn't think it was THAT big of a deal.. but i'm learning differently.
The doctors expressed to us that if the clot dislodges it has potential to lodge somewhere else, causing a pulmonary embelism (sp?) which can be fatal. this is not where i am right now... but precautions need to be taken to prevent this. again --- not happening right now, its just a possobility that my doctors are aware of and therefore safeguarding me from. please pray that doesnt happen.
also, there was debate about what to do with the port last night. the definite plan was (and is) to run blood thinners through IV to prevent the clot from becoming bigger. most blood clots are reabsorbed by the body, which we are hoping/praying will happen. the controversial part was that some doctors felt the thinners should be run through the port itself, and others were completely against that.
If we run anything through the port, the fluids might push off the clot, putting me at risk for embelism. However, if we stopped all use of the port, the entire porticath line (it goes from my mid chest veins, to my neck veins and winds down into my heart) would be compromised. 5ccs of blood thinner before you stop using the port for an amount of time is the said requirement for maintaining the portline and keeping it unclogged for your next use. So.. if we cant run ANYTHING through it.. i could lose my port.
So.. we could run it through the port, or we could stop the use of the port, and put in two peripheral IVs - one in each hand.
It was a very emotional night. I was extremely bipolar - praying and standing on God's promises, and then crying. Then praying, then crying. our final decision was to very slowly push 5 ccs of blood thinner through the port to preserve it, and then put in the two peripheral ivs.
now i don't mean to sound dumb, but i havent had a peripheral in a long time, and the insertion, although its nothing, was making me nervous.
so, the first iv was put in my right hand. it went well. the nurse got it in successfully the first time. the second iv, however, didnt go quite as well. I have small veins.. but apparently the veins on my left side are really small. The first stick, it wouldn't insert because the vein was too small. The second try -- the iv inserted, but then blew, which usually means that the vein got punctured, and then swells (blows) up. My hand turned black and blue and swelled very quickly. Obviously that iv didn't work out. While we were pressing a cold soda can on the area to stop the swelling (hahaha), the nurse looked at the other veins in that hand, and in my arm. She didnt feel she would be able to get an iv inserted into the left arm or hand. she was willing to try, but still felt it would be unsuccessful. The nurses told us we could have a doctor try - ssometimes they are good at it and sometimes not so good. We elected to try and have a doc do it, although it'd still be hard because of my small veins. The doctor who came in is one i like! I met him the other night when we were having complications with my blood sugars, and he came in and gave us our options. 1) we could try for an iv in the left arm/hand 2) we could put an iv in my foot -- but then i cant walk 3) an iv in the neck ( TOTALLY skeeved me out!) or 4) we could try to run the blood thinner through the port - if we have to do that we will, but its trying to be avoided.
So we tried for a left hand iv and praise God - he gave guidance of that doctors hands, and that little needle to go in! it inserted! pray it lasts, because its in such a small vein (i'm used to small things.. and i was even surorised how small the vein was) and its in between my knuckle area, so its very fragile. also, because the vein is so small, they had to use an extra small needle, which can only handle a certain amount of pressure and infusion without blowing.
When the IVs were going in.. i was praying. desperately. I was anxious about the pain, about getting a good working line put in, and considering i was already an emotional bomb, every little thing brought tears back to my eyes. And as i was praying, the Lord reminded me of a verse i read two nights before.
Philippians 1:29 "For you have been given not only the privilege of trusting in Christ but also the privilege of suffering for him."
PRIVILEGE! Not job.. not burden.. PRIVILEGE! when they were poking my hands, all i could think of was the ivs going through the hands - like the nails in Jesus. my Jesus can more than relate the this small pain. All i could think during insertion was -- thank you for the scars, Lord <3
I have the privilege of having my hands poked because my Saviour had his pierced for me.
Crazy.
So.. last night was rough.. i didn't sleep much at all -- neither did my parents, who both stayed last night. This morning, as they were running the infusions into the left hand iv, it hurt. I could feel the pain pulsating in my vein - it was driving me nuts. And just fyi, i used to get peripheral ivs when i was younger before i got the port, so i know about them. i know what it feels like when theyre starting to blow - and this morning, that's what it felt like. of course, my anxiety probably didnt help. i was praying and singing songs to God in my head, and the Spirit just gave me such a nice prayer. I asked God to hold open my vein -- spread the walls of my vein and not allow them to collapse, hold them open with his very hands. As i was singing in my head, i also asked that the pain stop because i was just so done. I was so tired, and trying to sleep, but couldnt because the pain. i was so emotionally tired, that i couldn't even be frustrated about this, just sad. and i continued to worship, not even a second later, for real, the pain was gone. GONE. Jesus swept over my hand and healed the pain --- he held my veins open like he held the walls of the red sea open. He healed my pain.
MY JESUS BROUGHT ME RELIEF.
I cant even express how wonderful Jesus is. That word relief means so much when you just can't find any. But i found it. Jesus. <3
Today has been a relief day. It's very stressful with the ivs, because they could stop working at any time. They are painful at times, and the stress of the clot has brought up complications such as i'm not allowed to do my chest therapy - which is a necessity for airway clearance - because theyre afraid any kind of chest compression could dislodge the clot into my lung. What a blessing that has been today! No therapy made so much time in my day, i was even able to take a nap! Furthermore, i have an intestinal infection, and it was getting kind of bad. We thought it was no big deal, however, the doctor informed us that .. just like everything else in the world lol... if this remains untreated or worsens to a degree it could lead to surgery or be fatal. today though, we have seen a drastic improvement from yesterday in this area! it is still bad, but so much better than the previous days! Thank you God for using the medications! That's pretty much it for today i think. for anyone who's actually reading this novel, i hope this is a testimony of God's incredible love. I hope he speaks through it and thanks for reading and praying!
I am not privileged, not suffering, because God is love.
I have two working ivs because God is love.
Jesus brings me relief because God is love.
I am typing this.. because God is love.
PS -- please pray for alyssa sabo - she is a young woman with a mighty testimony and although God has brought her through SO MUCH, she still has quite a journey ahead of her and much glory to bring to Jesus' name! http://www.facebook.com/#!/event.php?eid=250827721601132
Friday, August 19, 2011
To hear or not to hear, that is the question
So despite the current situation .. I have to write about the greatness of God. He is just so nice! And bahhh. He's PERFECT <3 Strong, protective, loving, understanding, etc...
Today I had a hearing test to see if I am truly completely deaf in my left ear and to determine my level of hearing in my right ear. The woman from audiology and her two students came to my room, hooked up the machine, and did the test. The head of audiology was speaking with us and with a minor gusto told us that she does not understand how I can only be deaf in my left ear. If I went deaf from the use of a particular medication (which I won't say what it is, because it is a wonderful drug, but unfortunately was OVER used in my case), it would be systemic -- meaning I would go deaf in both ears, not one. So she asked rhetorically, why isn't she deaf in her right ear? That's a legitimate question. The only problem with her question .... it's not rhetoric. There IS an answer of why I'm not deaf in that ear and it's because of the Grace and Power of Christ Jesus! He put his hand over my ear and said no. I LOVE IT!! The woman didn't seem to believe that answer, but that doesn't change the fact that it's true. I only hear because God protected that ear. He only let the attack go so far. I absolutely love that God, the same Creator and Almighty who set the boundaries of how far the ocean rolls onto the sands, did the same thing on me! He set the boundary, and protected my right ear. What a Mighty King <3 It was so nice of Him to remind me of that today. Besides that, he blessed me with such a great afternoon of laughter, he showed me his wonder and how he pumps my heart (I got a test that's like an ultra sound, but on my heart), He is the Redeemer, Protector, Fighter, Lover, and KING!!! I will write more tonight if I can, but I'm not sure how I'll feel after they put in the IV (pray for IVS -- we need to have to IVs in my arms running at the same time). And.. they are getting ready to start, so my arms are kind of needed to make this successful :P Thanks for the prayers.
I can hear because God is love.
Today I had a hearing test to see if I am truly completely deaf in my left ear and to determine my level of hearing in my right ear. The woman from audiology and her two students came to my room, hooked up the machine, and did the test. The head of audiology was speaking with us and with a minor gusto told us that she does not understand how I can only be deaf in my left ear. If I went deaf from the use of a particular medication (which I won't say what it is, because it is a wonderful drug, but unfortunately was OVER used in my case), it would be systemic -- meaning I would go deaf in both ears, not one. So she asked rhetorically, why isn't she deaf in her right ear? That's a legitimate question. The only problem with her question .... it's not rhetoric. There IS an answer of why I'm not deaf in that ear and it's because of the Grace and Power of Christ Jesus! He put his hand over my ear and said no. I LOVE IT!! The woman didn't seem to believe that answer, but that doesn't change the fact that it's true. I only hear because God protected that ear. He only let the attack go so far. I absolutely love that God, the same Creator and Almighty who set the boundaries of how far the ocean rolls onto the sands, did the same thing on me! He set the boundary, and protected my right ear. What a Mighty King <3 It was so nice of Him to remind me of that today. Besides that, he blessed me with such a great afternoon of laughter, he showed me his wonder and how he pumps my heart (I got a test that's like an ultra sound, but on my heart), He is the Redeemer, Protector, Fighter, Lover, and KING!!! I will write more tonight if I can, but I'm not sure how I'll feel after they put in the IV (pray for IVS -- we need to have to IVs in my arms running at the same time). And.. they are getting ready to start, so my arms are kind of needed to make this successful :P Thanks for the prayers.
I can hear because God is love.
Thursday, August 18, 2011
LOTS of rambling on
It's that time again... time to blog! And now that I actually have time to blog.. brace yourselves because these might get a little lengthybut maybe not.. we'll see haha. Anyway.. I'll make this entry a short one.. not because there's not a lot to say... but I'm pretty tired and only have 20 minutes to relax until my next treatments and therapy. So... basically I'm doing fine in the hospital. My oxygen beens running a little low, so I'm on oxygen most the day, but I can take it off sometimes. I've been here for 3 days now, and I don't feel a change in my breathing, but my cough is looser, and I'm not hacking up a lung all the time anymore! I just wanted to remind everyone that I'm not dying over here. This wasn't an "o my goodness, she can't breathe! admit her to the hospital!" type situation. I have been breathing badly, and recently having symptoms that it's getting worse. I got so used to the way I was breathing, that I didn't realize that I should NOT be breathing like this. My doctor, however, recognized it right away, and acted on it, which is good. I am excited to be here because for the past year or so we've been treating my CF infections and I'd get "better" and then just get sick again sometime not too long after. The past few weeks, though, I've lost weight, and my oxygen has been a little lower than normal. So, here in the hospital, they reviewed my over-night tube feed regimen, and came to the conclusion that if we changed the regimen, I might benefit more from it. Who knows, but it's worth a shot! So we're working on that.. and I'm on IV antibiotics for my lungs.. doing therapy 3 times a day... andddd.. just trying to turn this around. It's been good so far. The nurse even switched our room the first night we were here, to a room with a beautiful view of the GW bridge and Hudson river. How nice is God? I'll post a picture on here another time. Anyway.. God has just been holding on to us, protecting us and guiding us. But that shouldn't be surprising. hahaha. Anyway. I wrote wayyyy more than expected (shocker, I know.). I'll try to blog tomorrow and tell about how sweet Jesus is, but it's going to be a busyyy day tomorrow, so we'll see. Anyway, thank you for all your prayers!!
This road isn't a dead end because God is love.
This road isn't a dead end because God is love.
Monday, July 11, 2011
P.S.S.
or really it should be P.P.S. but still. I didn't make up the phrase Soak up the Son -- heard it on star 99.1 and love it!
I wanna soak up the Son :]
Hello! Looooonnnggg time no talk. I haven't been writing on here.. obviously. But I wanted to tonight because God is just SO nice. So... This week is VBS (Vacation Bible School - a camp-like outreach at church where kids come from 8am-1pm ish and do crafts, have snack, and learn about God in lots of fun ways -- it's totallyyyy free and it's for ages kindergarten through 5th grade -- the teens, 6th grade through 12th, meet at night for their own youth night fun with snacks and games too! Feel free to go, or send your children! 225 Middlesex Ave, Metuchen, NJ -- phone number 732-548-4279) And I was psyched. I LOVE it! It's tiring, but so much fun. I was worried, though, because my breathing hasn't exactly been up to par. I want to serve the Lord, and serve these kids, but I don't want to do it and do a bad job because I can't breathe. Anyway, needless to say people started praying! Praying that I could breathe and have energy and strength, etc. I got my therapy done early Sunday night so I could go to bed early and wake up nice and early Monday morn. The plans.. got a little .. changed. I guess I caught some kind of stomache bug. I was feeling SO sick last night. Not breathing wise, normal people wise haha. I couldn't hold anything down (sorry for being gross) and my blood sugar kept dropping, which meant I kept needing to have soda, which meant I kept.. not holding it down. Bla bla bla. It was rough. Have you ever felt so sick, but it's not like you can put a finger on what exactly is hurting? It was almost like that, and my mom even had to calm me down a few times because I felt so sick I started to panic a little. Anyway.. between 3 and 4 am, I could finally take tiny sips of gateorade and hold it! As soon as we knew I was ok for a little fluid, I took two pills for anti-nausea. God used them! Praise God! I REALLY hated feeling so sick, but God took it away! I was still sick though, had to be careful not to drink too quickly, and then took my temperature. 104.1F. Oy. Sooo something was definitely wrong haha. Anyway, after being up all night, I called one of the VBS directors at 6:30am to say that I really couldn't go. She was SO nice! It's such a blessing for people to be soo understanding and kind. She told me not to worry and please feel better. So I spent the day on the couch basically. And God just awed me. It seems as though he didn't answer the prayers of so many people, myself including. But really, I think it's just the opposite. What if God used the VBS prayers to protect me? No, I didn't get to go to VBS, but all day I've barely coughed at all, even during my therapy. My oxygen levels have been low lately, 92, sometimes 91 and I'll need oxygen. Today they were steadily 94. The pains in my chest were removed. It's as if God KNEW I was going to get this sick, and he knew that people would pray for my breathing in doing VBS, so he used VBS to get them to pray specifically for that, so that now, I didn't suffer while I was sick by adding breathing complications to it. I spoke with my doctor's office today, and they asked if I was coughing more than usual. I replied "No... less actually.." How awesome is Jesus? By His stripes we are healed! And I love that by His scarred hands, we are protected. This could have more than easily turned into a hospital trip, but it didn't. And God even added in some plus's for me. My doctor feels I got so sick, ironically, from a reaction to being on antibiotics. So he said to stop them. When I'm on the antibiotics, I can't be in the sun. Even sometimes on a gray day, if I sit outside, I'll get a burn. It's been ok because I breathe better in the air conditioning anyway, but I want to be in the sun sometimes. And now I can! AND it's one less pill for me to take, and figure out the timing of and everything. Bahh.. God's so nice! Anyway, as of right now my temp is 99.4, I can eat, my headache isn't as bad, but my stomache's still upset and I'm feeling a little tired/groggy. But compared to last night, woof! I just love how God really does plan everything, even though we forget he does. And how he spends time with us, even when we're just laying on a couch. Bahhh.. I can't wait to feel better and enjoy the outdoors with God -- I can't wait to soak up the Son! :P
I am shielded because God is love.
Psalm 3:3 "But you, O Lord, are a shield around me"
P.S. Thank you all for all the prayers!
I am shielded because God is love.
Psalm 3:3 "But you, O Lord, are a shield around me"
P.S. Thank you all for all the prayers!
Monday, May 9, 2011
bahhh
How nice is God?! Last night I couldn't sleep.. the pain in my side hurt in basically every position -- except if I layed flat on my back -- a position, try as I might, I can't sleep in. So around 3 I fell asleep for about a half hour, and around 4 I just decided to bear the pain. Except -- God had made it so much less than it was. It REALLY hurt when I would lay on either of my sides, but then.. God made it bearable! It still hurt a lot but was mild enough that I could at least fall asleep! Thank you Jesus! And throughout all the coughing, with my nightfeed in and everything, I didn't get sick! ANNDDD you know how when you're so tired and you can't sleep you just get frustrated and like mad at the world haha that didn't happen! God instead gave me Jesus glorifying thoughts, reminding me of the sword in Jesus' side, and how much he loved me to endure pain like that. How awesome. And then today, I just felt so in the center of God's hand. I was breathing better than yesterday and not coughing as much -- which was awesome. I said to my mom -- I love not totally not breathing haha I was in such a good mood -- and I got to give a Bible to my professor, and I had enough breath to walk to the class to give it to her, and just bahhh . I love feeling held by God -- even though I know he holds me all the time lol -- I got my x-rays done and my mom was nice enough to come with me! and drive! lol I didn't feel like driving, and then she treated me to taking me to a shoe store and we I got shoes that I've been wanting. Ah. Good, good day. Time for bed now. Bahhh God :]
He holds me in the palm of His hands because God is love.
He holds me in the palm of His hands because God is love.
Sunday, May 8, 2011
Long, but good!
Bahh -- where to begin?! Well.. Cuatro de Mayo was great. Yes, that's correct, CUATRO de Mayo -- JULIANNA'S FIRST BIRTHDAY!!! She is SO stinkin' cute! She wasn't really sure about the cake, and when she touched the icing, she got grossed out haha but she knew exactly what to do with the presents! And her best friend, Addy, was right there to help her celebrate and play with her new toys! HAHA they are way too precious -- I can't even take it hahah. Mothers' Day (today) was also really great! Nicole was soooo generous in making us all a huuuuge dinner! (Thanks Nicole!) And little Juj was quite the entertainment in talking, smiling, and being so cute! Ah, I still can't believe she's real -- and we get to love her! On Jujy's down times, aka botty drinking moments, the dogs were more than enough to pay attention to -- Cody: the wild westie! ready to jump on everything, and kill any squirrel that dare cross his path, Pip- the tiny but mighty! definitely the hyperactive out of them all (even Cody!, now THAT says something!), and Sprocket: the calm, snuggly, old fellow who thinks Cody and Pip are crazy seperately, let alone together! Haha it was really fun having the whole fam together.
Health wise-- I'm not breathing well, and starting yesterday I've had a pain in the side of my chest.. not sure if I pulled a muscle or broke a bone -- but hopefully I'll find out tomorrow with an x-ray. The enemy has REALLYYYY been eating at me. The deceiver loves to... well.. deceive. And that's exactly what he's been doing. I am so tired, especially in the mornings -- even if I got more than enough sleep, and it's really hard to wake up to know that as soon as my eyes open, the coughing begins. I am SO thankful for my sound mind --- and I keep praying God maintains that! My body however, doesn't agree with my mind most of the time. I want to go out and do things, or exercise to try and feel better.. and my body is kinda just like -- haha yeaaa right, we are going to lay here instead. So that's a little frustrating. And nights are the worst for me. I end up staying up too late, who knows why, and it's just like leaving the door open for Satan to come and be my "comforter". These past nights (and some days) I have been feeling awful.. This is not where I saw myself at 21 years of age. I definitely didn't imagine that my health could even get this bad. And then I start snowballing -- well if it's this bad now, how am I going to be in a few years? Am I even going to make it to a few years? I've always wanted to get married -- that's not in the picture now. etc, etc, etc... Bla. During one of these depressive moments, I decided to read some letters from a book that I HIGHLY reccommend. "His Princess Warrior" by Sheri Rose Shepherd. Has anyone ever seen the "everything skit"? Where the person is just getting so hit by the things of the world, and then Jesus steps in and is the barrier between her and the things trying to tear her down? And then Jesus stands up and all the sins fall -- Jesus breaks their bondage? It's awesome --if you haven't seen it, even if you have, look it up on youtube - it's called the everything skit. Anyway, I know it'll still be a struggle, but that's what I feel like Jesus started to do for me. He reminded me that it really isn't about me, and not like oh you shouldn't be thinking of yourself -- but reminded me that HE has bigger plans, and even though my little plans seem so great to me, HE alone is the lover of my soul, and He does love me. He just.. comforts me.. I can't explain. But here's the letters I read.
"My Princess Warrior
Faith is the only thing that will hold you together when the world around you seems to be falling apart. I want you to learn to live your life fueled by faith; there is nothing too big for me to handle for you, My beloved. I am your God who will move a mountain if it stands in the way of My will for you. My power will be seen in your circumstance when you begin to believe I am who I say I am, and I will do as I promise. You are Mine, and I hold in My hand all you will ever need. I love you, but I cannot force you to live by faith - it is your choice. Only you can make the decision to believe and experience the mighty works I want you to see.
Love,
Your King who has faith in you"
Bible References:
"He replied, 'Because you have so little faith, I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you.'" Matthew 17:20-21
"What is faith? It is the confident assurance that what we hope for is going to happen. It is the evidence of things we cannot yet see." Hebrews 11:1
"My Princess
You are not called to follow others, My beloved Warrior. I have appointed you to lead them to Me. Life will become a great adventure if you will step out to the front line and fight for those who are too weak to fight for themselves. Don't look back on what you have lost; look forward to the great victories that are in front of you. You don't have to hide behind your fears and insecurities any longer. I can and will turn your pain into passion to change the world around you. As you find your way to the front line, hide this truth in your heart: 'This fight is not just for you, it is for all those you dearly love.'
Love,
Your King who fights with you"
Bible References:
"He will say to them, ' Listen to me, all you men of Israel! Do not be afraid as you go out to fight your enemies today! Do not lose heart or panice or tremble before them!" Deuteronomy 20:3
"Together they will be like mighty warriors in battle trampling their enemy into the mud of the streets. They will fight because the LORD is with them, and they will put the enemy horsemen to shame." Zechariah 10:5 (TNIV)
Last but certainly not least.. The Lord used..
"My Princess
You are never alone on the battlefield, My beloved Warrior. I would never expect you to handle this life alone. That is why I sent My Holy Spirit to comfort you during combat. When you are overwhelmed by the spiritual warfare around you, I want you to call My name and I will come to your rescure. I will destroy the works of the enemy and carry you to a place of restoration. I hear your heart's cry from heaven. Not a single tear that has fallen down your cheek will be wasted. Your heart poured out to Me will cleanse your soul and joy will be yours once again!
Love,
Your King who wipes away your tears"
Bible Refences:
"But in my distress I cried out to the LORD; yes, I prayed to my God for help. He heard me from his sanctuary; my cry to him reached his ears." Psalm 18:6
"He will once again fill your mouth with laughter and your lips with shouts of joy." Job 8:21
Bah.. My sweet Jesus. That's who loves me, that's who comforts me, that's who saves me. Speechless.
I am speechless.. because God is love.
Health wise-- I'm not breathing well, and starting yesterday I've had a pain in the side of my chest.. not sure if I pulled a muscle or broke a bone -- but hopefully I'll find out tomorrow with an x-ray. The enemy has REALLYYYY been eating at me. The deceiver loves to... well.. deceive. And that's exactly what he's been doing. I am so tired, especially in the mornings -- even if I got more than enough sleep, and it's really hard to wake up to know that as soon as my eyes open, the coughing begins. I am SO thankful for my sound mind --- and I keep praying God maintains that! My body however, doesn't agree with my mind most of the time. I want to go out and do things, or exercise to try and feel better.. and my body is kinda just like -- haha yeaaa right, we are going to lay here instead. So that's a little frustrating. And nights are the worst for me. I end up staying up too late, who knows why, and it's just like leaving the door open for Satan to come and be my "comforter". These past nights (and some days) I have been feeling awful.. This is not where I saw myself at 21 years of age. I definitely didn't imagine that my health could even get this bad. And then I start snowballing -- well if it's this bad now, how am I going to be in a few years? Am I even going to make it to a few years? I've always wanted to get married -- that's not in the picture now. etc, etc, etc... Bla. During one of these depressive moments, I decided to read some letters from a book that I HIGHLY reccommend. "His Princess Warrior" by Sheri Rose Shepherd. Has anyone ever seen the "everything skit"? Where the person is just getting so hit by the things of the world, and then Jesus steps in and is the barrier between her and the things trying to tear her down? And then Jesus stands up and all the sins fall -- Jesus breaks their bondage? It's awesome --if you haven't seen it, even if you have, look it up on youtube - it's called the everything skit. Anyway, I know it'll still be a struggle, but that's what I feel like Jesus started to do for me. He reminded me that it really isn't about me, and not like oh you shouldn't be thinking of yourself -- but reminded me that HE has bigger plans, and even though my little plans seem so great to me, HE alone is the lover of my soul, and He does love me. He just.. comforts me.. I can't explain. But here's the letters I read.
"My Princess Warrior
Faith is the only thing that will hold you together when the world around you seems to be falling apart. I want you to learn to live your life fueled by faith; there is nothing too big for me to handle for you, My beloved. I am your God who will move a mountain if it stands in the way of My will for you. My power will be seen in your circumstance when you begin to believe I am who I say I am, and I will do as I promise. You are Mine, and I hold in My hand all you will ever need. I love you, but I cannot force you to live by faith - it is your choice. Only you can make the decision to believe and experience the mighty works I want you to see.
Love,
Your King who has faith in you"
Bible References:
"He replied, 'Because you have so little faith, I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you.'" Matthew 17:20-21
"What is faith? It is the confident assurance that what we hope for is going to happen. It is the evidence of things we cannot yet see." Hebrews 11:1
"My Princess
You are not called to follow others, My beloved Warrior. I have appointed you to lead them to Me. Life will become a great adventure if you will step out to the front line and fight for those who are too weak to fight for themselves. Don't look back on what you have lost; look forward to the great victories that are in front of you. You don't have to hide behind your fears and insecurities any longer. I can and will turn your pain into passion to change the world around you. As you find your way to the front line, hide this truth in your heart: 'This fight is not just for you, it is for all those you dearly love.'
Love,
Your King who fights with you"
Bible References:
"He will say to them, ' Listen to me, all you men of Israel! Do not be afraid as you go out to fight your enemies today! Do not lose heart or panice or tremble before them!" Deuteronomy 20:3
"Together they will be like mighty warriors in battle trampling their enemy into the mud of the streets. They will fight because the LORD is with them, and they will put the enemy horsemen to shame." Zechariah 10:5 (TNIV)
Last but certainly not least.. The Lord used..
"My Princess
You are never alone on the battlefield, My beloved Warrior. I would never expect you to handle this life alone. That is why I sent My Holy Spirit to comfort you during combat. When you are overwhelmed by the spiritual warfare around you, I want you to call My name and I will come to your rescure. I will destroy the works of the enemy and carry you to a place of restoration. I hear your heart's cry from heaven. Not a single tear that has fallen down your cheek will be wasted. Your heart poured out to Me will cleanse your soul and joy will be yours once again!
Love,
Your King who wipes away your tears"
Bible Refences:
"But in my distress I cried out to the LORD; yes, I prayed to my God for help. He heard me from his sanctuary; my cry to him reached his ears." Psalm 18:6
"He will once again fill your mouth with laughter and your lips with shouts of joy." Job 8:21
Bah.. My sweet Jesus. That's who loves me, that's who comforts me, that's who saves me. Speechless.
I am speechless.. because God is love.
Tuesday, May 3, 2011
blaaa.
another late night -- or should I say early monring -- blog. I don't mean to sound complainy -- but frankly today stunk. Had stuff on my mind all day.. didn't do much.. slept.. ate.. read some Bible.. watched TV and a movie.. tried to get into bed earlier-- but haven't been able to sleep and now my blood sugars going low so I have to stay up .. blaaa don't feel good. and I feel bad that I'm so .. weary. Like my previous post said -- I should be rejoicing! But I'm just too.. tired and bla. Thankfully God is a God who will stay with me through my bad moods. I love that song that says "I will be here when you feel like being quiet." It's so true .. Thank Jesus that we can just curl up in Him even when we are complaining and not giving Him the praise He so deserves -- He still calls us to Him and wraps us in His arms. "I'm restless, til I rest in You, O God" -- Audrey Assad, Restless.
I can curl up and cry to my Saviour because God is love.
I can curl up and cry to my Saviour because God is love.
Monday, May 2, 2011
complain, complain, REJOICE!
Bla... so I don't feel very well. I had a rough day, and on top of that -- my poor little lungs are so tired. I am constantly breathing SOO hard, I really could be Darth Vader -- but I'd have to be Darth Vaderette -- Luke, I am your mother... hahah anyway.. I'm coughing what seems like constantly, too. I can feel my body getting tired, and everything is starting to frustrate me. I went to class today, though. Thanks to God, of course. I walked in and one of the girls who sits in front of me was like "Are you ok..." and then the teacher got nervous and came over to me and asked if I was all right, and told me not to push it, that if I needed to, I could leave anytime. God seriously blessed me an understanding professor! I came home after, tried to eat something but barely could -- the coughing makes me feel like I've just done 205357 crunches, and nauscious (sp?).. After that, I took a 3 hour nap which was nice. Woke up to lil Pip literally jumping all over me, and then Sprock wanted to snug.. on top of me -- he isn't the lightest little dog haha but I love them both. I woke up and did my therapy.. which frustrated me to no end. I know I'm supposed to cough, but lungs were literally tired before I started my therapy.. And then on top of that.. (if you have a weak stomache, skip this part cause it's gross.) the therapy stirs up the mucus so you can cough it out, but sometimes I can't cough it out.. So I can just feel it like vibrating in my chest every time I breath in, and then I naturally try to cough it out cause I HATE that feeling .. blaaa .. I ate a little salad and a little chocolate afterwards. Watched TV, read some Bible, and now came upstairs to sleep.. but I just don't feel well, so I can't sleep, hence I decided to blog. But enough complaining!
Praise God! He has surrounded me with Christ lovers to encourage me! I can't tell you how much I needed the body of Christ last night, and today to help me through. I thank God for them sooo much! How nice of God too, that HE is all we need, but He understands how we feel, so although He's going through everything with us, He still gives us members of the body to lean on and give each other confirmation in our decisions. Bahh.... And how awesome is He that He, Himself, encourages us with His Word. Today .. I honestly felt, and still feel a little bit, like I just want to be done. I emailed my docs, and one of them said to start antibiotics, and another treatment.. and I just felt soo... done. Not defeated, but like I just wanted to give up.. I'm already on pills and treatments and the works. New pills come with new problems... Antibiotics upset my stomache. So maybe I'll breathe a little better, but my stomache kills. I'm just trading in problems. And the treatment -- I JUST came off. If we keep using it as a rescue every single time, it's going to stop working. I was done. And then I read 1 Corinthians 1. And Paul talks about how he's happy he only baptised a handful of people, so that no one can say they were baptised in Paul's name.. he goes on to say that his gift isn't for baptising, it's for preaching the Good News. And God just used that. My gift may be long suffering. Am I going to just give up because it gets frustrating? Let me say it again. My GIFT may be long suffering. Gift - not curse. Am I weak in my gift? Yes. But in my weakness, Gods strength is made perfect. Would I like a different gift? hahah perhaps... but THIS is what God has chosen for me for now, and I should rejoice in it! Aren't we called to rejoice in our sufferings because we are relating to Christ's sufferings? Yes! And by far, Jesus suffered much more than I! And He did it for me -- and still chooses to endure this suffering with me. What an incredible God we serve. As I'm typing this, I know it's not even fulling hitting me how great this is, and certainly itsn't hitting me how great Jesus is.. I can't wait til the day I fully see Him and grasp more of His Holiness. And how nice too.. that I don't feel well, and I can't sleep, and God gives me this time to take my mind off of how I'm feeling this exact moment, and focus it instead on Him. Makes me want to laugh, but that's just like God -- "He will once again fill your mouth with laughter and your lips with shouts of joy." Job 8:21
I can rejoice in suffering because God is love.
Praise God! He has surrounded me with Christ lovers to encourage me! I can't tell you how much I needed the body of Christ last night, and today to help me through. I thank God for them sooo much! How nice of God too, that HE is all we need, but He understands how we feel, so although He's going through everything with us, He still gives us members of the body to lean on and give each other confirmation in our decisions. Bahh.... And how awesome is He that He, Himself, encourages us with His Word. Today .. I honestly felt, and still feel a little bit, like I just want to be done. I emailed my docs, and one of them said to start antibiotics, and another treatment.. and I just felt soo... done. Not defeated, but like I just wanted to give up.. I'm already on pills and treatments and the works. New pills come with new problems... Antibiotics upset my stomache. So maybe I'll breathe a little better, but my stomache kills. I'm just trading in problems. And the treatment -- I JUST came off. If we keep using it as a rescue every single time, it's going to stop working. I was done. And then I read 1 Corinthians 1. And Paul talks about how he's happy he only baptised a handful of people, so that no one can say they were baptised in Paul's name.. he goes on to say that his gift isn't for baptising, it's for preaching the Good News. And God just used that. My gift may be long suffering. Am I going to just give up because it gets frustrating? Let me say it again. My GIFT may be long suffering. Gift - not curse. Am I weak in my gift? Yes. But in my weakness, Gods strength is made perfect. Would I like a different gift? hahah perhaps... but THIS is what God has chosen for me for now, and I should rejoice in it! Aren't we called to rejoice in our sufferings because we are relating to Christ's sufferings? Yes! And by far, Jesus suffered much more than I! And He did it for me -- and still chooses to endure this suffering with me. What an incredible God we serve. As I'm typing this, I know it's not even fulling hitting me how great this is, and certainly itsn't hitting me how great Jesus is.. I can't wait til the day I fully see Him and grasp more of His Holiness. And how nice too.. that I don't feel well, and I can't sleep, and God gives me this time to take my mind off of how I'm feeling this exact moment, and focus it instead on Him. Makes me want to laugh, but that's just like God -- "He will once again fill your mouth with laughter and your lips with shouts of joy." Job 8:21
I can rejoice in suffering because God is love.
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