Helloooo! These past few days I've been improving! I am sitting up more, sleeping less during the day, and walking around a little more and more steadily! I have more energy, too. All good things! (Reminder: I could still use your prayers! I'm improved meaning from the state I was in prior.. I am still in need of a double lung transplant, and very weak. I don't want to be a downer .. but some people don't understand the magnitude of the disease that when I say I'm doing better.. it doesn't mean I am healed.. I'm happy to be doing better than I was but I still need a double lung transplant -- so i'm obv not in tip top shape over here haha)
Ok so now that awkwardness is over, haha I wanted to tell you how God is encouraging me. He's so nice! So.. my bestie, June, had made me a welcome home poster but unfortunately didn't get to bring it to my house for when I got home. She took a pic of it and sent it to me. I loved it but she was a lil bummed that she had planned on giving it to me that day and wasn't able to. Fast forward about a week later. June went to our church for service on Sunday as usual, but she brought the poster, and a bunch of my church family wrote encouraging and loving notes to me on it. How uplifting! Thanks guys!! After service, June came over and was thrilled to finally give me the poster she had made which was now enhanced with all the love from our church fam as well. And God, in his quiet and yet reassuring way, brought encouragement from it.
June wanted to give me the poster last week and was upset when that didn't work out. But now that she had waited the week, our church fam got to sign it and be part of it. Had June rushed, and given it to me, I never would have gotten the blessing of all those loving messages on the posters. She waited, and got to give me so much more than she had even thought of before.
I want transplant now. I wanted it yesterday lol and God just used this situation to remind me that in HIS perfect timing not only will I get what I was expecting, but he will give so much more on top of that. I can only imagine so much about my new lungs and life afterwards, and it's hard to wait because all of that seems so great for right now! But God has a plan that goes beyond what I mustered up thinking about, and to bring about that abundance, waiting is necessary. But how nice of Him to reassure me, and remind me. Like my own little personal parable haha but it's not just for me -- if you're going through a waiting period, remember to keep walking in relationship with the Lord, and remember that the waiting is just the extra fruits ripening; the extra flowers blooming; the abundance that you couldn't even think of but the Lord wants to bestow upon you. bahh it's exciting to think about the surprises he has for us!
In the waiting times.. it can be hard to draw closer to God because we don't understand why he's withholding from us what we think is the best for us. But that's when it's especially important to draw even closer to God.. Cuddle in close, and remember what he's promised.
Psalm 84:11 (NASB)
For the Lord God is a sun and shield;
The Lord gives grace and glory;
No good thing does He withhold from those who walk uprightly.
He doesn't withhold anything good from those who call him King and live like it. He doesn't withhold anything good from his children. He promises <3
So even though I'd rather have my way in my time.. I know what he has in store will be worth the wait.
http://www.youtube.com/watch?v=i6X71sXagUY -- thought of this song - check it out
I am hopeful in waiting because God is love.
Monday, July 8, 2013
Thursday, July 4, 2013
relief
I'M HOME!!!!!!!!!! seriously can't tell you how good it feels and what a world's difference it makes just to be in your own house. I cant do stairs, and am pretty unbalanced on my feet still, so I've just been hanging out on the middle level of our house, sleeping on the couch. Pip wasn't thrilled to see me.. well he was for 2.5 seconds but then he was really afraid of my o2 mask, so he wouldn't really come near me. We've made some progress and he'll lay next to me now, but he mainly follows my mom and dad around. Thanks a lot pip :[ lol just kidding - I still love him even though he doesn't love me :[ Sprocket, on the other hand, was so thrilled to see me regardless of the mask, that his tail wagged so hard it shimmied up through the rest of his body. He was/is sooo snuggy that he contorts his body into any position to be completely pressed into me. Sometimes, when we're not snugging, he just rests his head on the foot of my chair and wags his tail at me lol so cute.
This is definitely a struggle -- and that's sugar coating it. The mornings tend to be particularly hard -- especially the ones right after a really good day. For example, yesterday I did more than I have! I sat up at the table for breakfast for the first time, June and Patti visited (thanks guys!) and I even rode the exer-bike a few minutes. I knew I'd feel it today, but didn't realize how much. This morning was very hard to breathe, especially when I would cough -- it took me so long to recover from a little cough. My o2 started dropping and my body and lungs just hurt. I ended up taking a Percocet, which brings me to todays theme lol -- relief. I'm so thankful for all the ways my CF is relieved throughout the day. I feel tight? I do a treatment to relieve the tightness. Legs stiff? Take a little walk or do the bike to relieve them. Anxiety? Pain? Take a Percocet and feel the relief. In those moments when it's really bad, I feel as if it'll last forever. Then what? And I know this is weird.. but I just keep thinking there's no relief in hell. There's literally no thirst that is quenched to any degree. But with Jesus, relief abounds. Not only am I SOO thankful for the relief I'm experiencing now; that those times of extra hard breathing, extra pain, and then worry are relieved right now, but they will be forever relieved when I'm called home, or Jesus returns - whichever happens first lol. There's a song that says "He will lead me to springs of living water" and that's all I can picture today - how relieving the Living Water is. It's calm, and peaceful, flowing so gently. It's clear - theres no muck, or confusion -- just crystal clear. It's refreshing and cool. Just picture the beautiful spring running along... it's just so relieving. So today, among alllllll the things God is so abundantly blessing me with (I'll have to write a blog about that too and make sure to thank everyone for being those blessings -- someone please remind me to do that!) I am thankful for relief.
This fighter gets relief because God is love.
This is definitely a struggle -- and that's sugar coating it. The mornings tend to be particularly hard -- especially the ones right after a really good day. For example, yesterday I did more than I have! I sat up at the table for breakfast for the first time, June and Patti visited (thanks guys!) and I even rode the exer-bike a few minutes. I knew I'd feel it today, but didn't realize how much. This morning was very hard to breathe, especially when I would cough -- it took me so long to recover from a little cough. My o2 started dropping and my body and lungs just hurt. I ended up taking a Percocet, which brings me to todays theme lol -- relief. I'm so thankful for all the ways my CF is relieved throughout the day. I feel tight? I do a treatment to relieve the tightness. Legs stiff? Take a little walk or do the bike to relieve them. Anxiety? Pain? Take a Percocet and feel the relief. In those moments when it's really bad, I feel as if it'll last forever. Then what? And I know this is weird.. but I just keep thinking there's no relief in hell. There's literally no thirst that is quenched to any degree. But with Jesus, relief abounds. Not only am I SOO thankful for the relief I'm experiencing now; that those times of extra hard breathing, extra pain, and then worry are relieved right now, but they will be forever relieved when I'm called home, or Jesus returns - whichever happens first lol. There's a song that says "He will lead me to springs of living water" and that's all I can picture today - how relieving the Living Water is. It's calm, and peaceful, flowing so gently. It's clear - theres no muck, or confusion -- just crystal clear. It's refreshing and cool. Just picture the beautiful spring running along... it's just so relieving. So today, among alllllll the things God is so abundantly blessing me with (I'll have to write a blog about that too and make sure to thank everyone for being those blessings -- someone please remind me to do that!) I am thankful for relief.
This fighter gets relief because God is love.
Thursday, June 27, 2013
supa supa supa long.
This is going to be long.. Just a heads up. Also.. I've been in the hospital a week and a day.. so if you thought I was chatty and unorganized in my writings before... woohoooo this is going to rock your world. Pretty sure I'll be all over the place.
So last Monday night my parents and I were talking about me probably needing to go on IVs soon and I was going to call my doc Tuesday morning. Tuesday morning I woke up feeling like I reallyyyy needed a breathing treatment, which has become the new norm. Did the treatment, went back to sleep, woke up two hours later with low oxygen levels, kept turning to oxygen up, but couldn't sustain a good oxygen level, and our machine maxes out at 10 liters.. I was on 9. So called the doc, packed, got the o2 tanks (my parents did everything basically except the me calling my doc part and picking out my clothes haha) and off we were. I got admitted, started IVs. the usual hospital stuff. The next day or a few days later (I have my days mixed up now) everything seemed to be ok, and by that I mean nothing to be immediately alarmed about in an emergency type way. I was still needing a lot of oxygen, and wasn't really feeling better yet, but it usually takes about 5 days for me to turn around with the meds. Despite all this, I just felt like I couldn't breathe well. I asked my mom to do therapy on a particular section of my chest because I felt like it was wheezy and I couldn't clear it. Again, nothing too extreme here. My oxygen levels were improving as long as I stayed on 10liters, my heart rate was high, but in my normal range, but I just felt like I couldn't breathe. I had coughed up some blood, but I've done that before and altho it was more than I had coughed up before.. still nothing to freak out over, and I don't freak out easily anyway.. but I just really felt like it was hard to get a breath, and had to hyperventilate hardcore in order to breathe...
So ladies and gentlemen, this girl - who doesn't "freak out easily" - had her first legit panic attack. Yep.. not fun. We had done three nebs, and upped my steroids and oxygen, and I just couldn't get the breath in easier, hence bringing on a panic attack. They gave me Xanax! Actually.. I requested it lol never ever had that stuff before but figured if it worked like Percocet, I'd like it. Disclaimer - I'm really not a druggy. Anyway, it worked a little I guess, but it didn't really do very much or accomplish what I was hoping. After that episode of breathing/anxiety, I seemed to be ok. The docs told me I was allowed to walk the halls early morning, or at night (which for anyone who knows me, that means at night haha) so that I don't come in contact with any other patients. My mom and I went for a walk that night. Lots of heavy breathing, but I did it, and it wasn't awful by any means. We get back to the room and I'm in a good mood from walking and have some energy, so naturally my parents and I decide to play the best game ever -- boggle. As we're playing I had to go to the bathroom (i'm peeing like... well, what pees A LOT? insert that here.) and I coughed lightly, more like clearing my throat.. and coughed up lots of blood... and kept going. Apparently I'd be prettayyy good in a vampire film -- hint hint in case Edward is suddenly single -- altho I am team Jacob, so maybe that'd be awkward... Anyway, earlier that day I had gotten a CT scan and it showed blood in my left lung, then this happened, and so I was brought down to ICU. Apparently there are more than one ICUs, and I was in the least sick one. Anyway, after I think two days? there I got moved back to a regular floor, praise God!
Now God is good all the time.. but in my selfishness, I don't always see it.. Here's where he starts to just lavish me.
I was SOOO happy to have the heart monitors off.. they aren't a big deal, but they drive me absolutely insane. I'm on the reg floor now, have NO heart monitors, am out of ICU.. all good things! We go to our room, and I immediately forget all the ways in which God so clearly provided, and protected me this trip (and forever). I'm nervous about the floor nurse touching my port and doing it incorrectly. He comes in, knew just what he was doing.. in fact.. he's my favorite nurse thus far out of all my hospital stays! The ONLY one I truly trust with it. Moving on, after that, he says --" it's hot in here, if you want the temp changed, i'll call the techs." Ok... hold on.. a little history.. we have NEVER gotten anyone to be able to change the room temp to be a comfortable temp for me in any of my stays here. My dad even bought me a cute little pink fan this time because it gets SOO hot. So we're figuring it'll be like every other time someone's offered that or we've complained... nothing ends up happening. WRONG. TEN MINUTES later, a guy comes in.. 20 MINUTES later.. my room is bliss :] so nice and cool -- aka freezing for everyone else haha sorry mom and dad! but it was SOO nice. Then another nurse comes in and says we have to put the heart monitors back on because my heart rate is too high... NOT the end of the world here people. I cried. I had JUST gotten rid of my arch enemy heart monitor and now here comes the next.. and my heart rate really was within normal for me. After some explaining, and the floor doc looking it up, it turned out that I didn't have to wear them because my history showed this was normal. Then my dinner gets delivered and i'm listed as a diabetes diet -- this is kind of confusing, so bear with me .. I have diabetes, yes. But since it's caused by CF -- it's not type 1 or type 2 - it has it's own classification, and I need as many calories, as much salt, and fat and bla bla bla as I can get because of the CF... so restricting my diet to a normal diabetes diet actually really hinders me.. ok.. again, not the end of the world and I'm totally up in arms, ready to fight. Again, it gets worked out. God brought me out of the ICU, protected, provided, (and so many other things seen and unseen), and I'm barely into the room and already forgetting all that! But just like our merciful Jesus, he didn't get angry... He poured out more. I was in my room a half an hour.. 30 MINUTES.. and God cooled my room, gave me a trustworthy nurse, fixed numerous misunderstandings. Then to top it all off, my soul-sister from kindergarten and her boyfriend surprise visited me and brought me Crumbs cupcakes (still debating which ones are sweeter.. them or the cupcakes ;P) but seriously, they (the people, altho the cupcakes didn't hurt haha) were such a nice pick me up.. one that I didn't even know I needed, but the Lord did and put it on their hearts to come at that exact time. There's so much that God is doing, and it's just so ... bahhhh.
So anyway, is this a best selling novel yet? No? Just a novel then. Anyway, yesterday I had another panic attack. Coughed up some blood, but nothing that caused alarm, and it stopped. But then I got a pain/tightness in the left side of my chest and felt veryyy breathy. Sure enough my o2 levels were dropping a little -- still within an ok range, but it was interesting they were dropping from where they were when we hadn't changed how many liters I was getting. Anyway, they did an EKG to make sure my heart was ok, and then they said they wanted me to take Xanax. I cried. Again. I'm such a mush now! I felt like they thought I was crazy, like oh well, whatever she thinks she's feeling is just her being anxious... I didn't want to take it because I didn't think it'd do anything anyway (OH and I forgot.. after the first dose that didn't do much, they gave me a higher dose right before ICU.. and I went completely loopy like I had just woken up from anesthesia -- I don't remember much but my mom tells me I was pretty..chatty haha) so I definitely wasn't taking a higher dose again. Anyway, the docs came in and listened to my concerns and told me that wasn't the case at all! I was embarrassed to tell anyone I was feeling that way, so I had just been telling God, but then when they asked.. I figured i'd tell them. That was something else God did.. he gave me such reassurance through what they said, perfect timing, perfect words. I am SO thankful for all the docs and their hearts. Anyway, what they said was that when something is going on in the body, the rest of the body reacts and tenses and can cause more damage to whatever actually is going on. With the Xanax, it relaxes the body to lessen the risk of causing more damage. SO relieved about that. (And if all else fails, I can just remind everyone that before they told me where the bleed in my left lung was, I told them where I thought it was based on how I was feeling even when all my levels were ok.. and it was exactly where I had said .. so that makes me feel better, too. Not losing my mind people! Or not completely, at least. :P)
This time, the Xanax worked. I'm still debating if I liked it haha it did make me pretty woozy, and I slept most of it off, but it was SUCH nice sleep, and it relieved all my muscles that normally ache from working so hard to breathe. My headache, and my shoulder knots, and my back... all just relaxed and I could get comfortable in any position.. sooo nice.
Finally we are at today... WHICH HAS BEEN SO GOOD! I woke up early, not feeling tired/weary. We are starting to decrease my steroids, and I didn't have any hardcore shortness of breath episodes again, and no blood at all today. I sat up in the chair for a few hours, had a good breakfast, and felt at ease with my IVs as my fav nurse was my nurse again today. I even went for a walk! YEP! It wasn't that pleasant haha.. but I did it. It's a really weird feeling to have your legs and body be so weak when just last week you were home walking around (minimally but still). But what's even harder to grasp.. is that my legs/body aren't the problem. They could have kept going.. But my lungs were just like nope. It's my lungs that start to feel weird, and of course I breathe sooo heavily that Darth Vader has nothing on me. But it's just weird. I know I've used "weird" way to much in these few sentences but that's the only way I can explain it. Weird. I'm trying to build my muscle and strength back in my body.. but my lungs aren't cooperating. I keep trying to phrase it in a way that explains it... but I can't so I'll just stick with... weird.
BUT I didn't take as long to recover as I thought, and I'm proud that I did it. AND my lungs did feel exercised after -- which I really like, even if the work for it is rough. I guess I'm really starting to learn the meaning of being a fighter. I love that song Fighter by .. Gym Class Heroes? (sorry if i'm wrong!) -- Give me scars, give me pain, and they'll say of me this one's a fighter. -- And this isn't even the worst of it. But I'm going through fighting.
And what I love about the fight especially... is the Lord fights for me. (Exodus 14:14) And that even when I'm feeling like the fight is winning, He reminds me that "His pleasure is not in the strength of the horse, nor His delight in the legs of the warrior, The Lord delights in those who fear Him, who put their hope in His unfailing love." (Psalm 147:10-11)
It's not my strength that keeps God delighting in me. It's not my fight that keeps him lovingly, yet defensively protecting me. It's not my effort that makes the Lord eager to pour out his goodness on me, to bring me through, to lead me to rest..to lead me to victory. It's his unfailing love.
The fight will end victoriously for me because God is love.
So last Monday night my parents and I were talking about me probably needing to go on IVs soon and I was going to call my doc Tuesday morning. Tuesday morning I woke up feeling like I reallyyyy needed a breathing treatment, which has become the new norm. Did the treatment, went back to sleep, woke up two hours later with low oxygen levels, kept turning to oxygen up, but couldn't sustain a good oxygen level, and our machine maxes out at 10 liters.. I was on 9. So called the doc, packed, got the o2 tanks (my parents did everything basically except the me calling my doc part and picking out my clothes haha) and off we were. I got admitted, started IVs. the usual hospital stuff. The next day or a few days later (I have my days mixed up now) everything seemed to be ok, and by that I mean nothing to be immediately alarmed about in an emergency type way. I was still needing a lot of oxygen, and wasn't really feeling better yet, but it usually takes about 5 days for me to turn around with the meds. Despite all this, I just felt like I couldn't breathe well. I asked my mom to do therapy on a particular section of my chest because I felt like it was wheezy and I couldn't clear it. Again, nothing too extreme here. My oxygen levels were improving as long as I stayed on 10liters, my heart rate was high, but in my normal range, but I just felt like I couldn't breathe. I had coughed up some blood, but I've done that before and altho it was more than I had coughed up before.. still nothing to freak out over, and I don't freak out easily anyway.. but I just really felt like it was hard to get a breath, and had to hyperventilate hardcore in order to breathe...
So ladies and gentlemen, this girl - who doesn't "freak out easily" - had her first legit panic attack. Yep.. not fun. We had done three nebs, and upped my steroids and oxygen, and I just couldn't get the breath in easier, hence bringing on a panic attack. They gave me Xanax! Actually.. I requested it lol never ever had that stuff before but figured if it worked like Percocet, I'd like it. Disclaimer - I'm really not a druggy. Anyway, it worked a little I guess, but it didn't really do very much or accomplish what I was hoping. After that episode of breathing/anxiety, I seemed to be ok. The docs told me I was allowed to walk the halls early morning, or at night (which for anyone who knows me, that means at night haha) so that I don't come in contact with any other patients. My mom and I went for a walk that night. Lots of heavy breathing, but I did it, and it wasn't awful by any means. We get back to the room and I'm in a good mood from walking and have some energy, so naturally my parents and I decide to play the best game ever -- boggle. As we're playing I had to go to the bathroom (i'm peeing like... well, what pees A LOT? insert that here.) and I coughed lightly, more like clearing my throat.. and coughed up lots of blood... and kept going. Apparently I'd be prettayyy good in a vampire film -- hint hint in case Edward is suddenly single -- altho I am team Jacob, so maybe that'd be awkward... Anyway, earlier that day I had gotten a CT scan and it showed blood in my left lung, then this happened, and so I was brought down to ICU. Apparently there are more than one ICUs, and I was in the least sick one. Anyway, after I think two days? there I got moved back to a regular floor, praise God!
Now God is good all the time.. but in my selfishness, I don't always see it.. Here's where he starts to just lavish me.
I was SOOO happy to have the heart monitors off.. they aren't a big deal, but they drive me absolutely insane. I'm on the reg floor now, have NO heart monitors, am out of ICU.. all good things! We go to our room, and I immediately forget all the ways in which God so clearly provided, and protected me this trip (and forever). I'm nervous about the floor nurse touching my port and doing it incorrectly. He comes in, knew just what he was doing.. in fact.. he's my favorite nurse thus far out of all my hospital stays! The ONLY one I truly trust with it. Moving on, after that, he says --" it's hot in here, if you want the temp changed, i'll call the techs." Ok... hold on.. a little history.. we have NEVER gotten anyone to be able to change the room temp to be a comfortable temp for me in any of my stays here. My dad even bought me a cute little pink fan this time because it gets SOO hot. So we're figuring it'll be like every other time someone's offered that or we've complained... nothing ends up happening. WRONG. TEN MINUTES later, a guy comes in.. 20 MINUTES later.. my room is bliss :] so nice and cool -- aka freezing for everyone else haha sorry mom and dad! but it was SOO nice. Then another nurse comes in and says we have to put the heart monitors back on because my heart rate is too high... NOT the end of the world here people. I cried. I had JUST gotten rid of my arch enemy heart monitor and now here comes the next.. and my heart rate really was within normal for me. After some explaining, and the floor doc looking it up, it turned out that I didn't have to wear them because my history showed this was normal. Then my dinner gets delivered and i'm listed as a diabetes diet -- this is kind of confusing, so bear with me .. I have diabetes, yes. But since it's caused by CF -- it's not type 1 or type 2 - it has it's own classification, and I need as many calories, as much salt, and fat and bla bla bla as I can get because of the CF... so restricting my diet to a normal diabetes diet actually really hinders me.. ok.. again, not the end of the world and I'm totally up in arms, ready to fight. Again, it gets worked out. God brought me out of the ICU, protected, provided, (and so many other things seen and unseen), and I'm barely into the room and already forgetting all that! But just like our merciful Jesus, he didn't get angry... He poured out more. I was in my room a half an hour.. 30 MINUTES.. and God cooled my room, gave me a trustworthy nurse, fixed numerous misunderstandings. Then to top it all off, my soul-sister from kindergarten and her boyfriend surprise visited me and brought me Crumbs cupcakes (still debating which ones are sweeter.. them or the cupcakes ;P) but seriously, they (the people, altho the cupcakes didn't hurt haha) were such a nice pick me up.. one that I didn't even know I needed, but the Lord did and put it on their hearts to come at that exact time. There's so much that God is doing, and it's just so ... bahhhh.
So anyway, is this a best selling novel yet? No? Just a novel then. Anyway, yesterday I had another panic attack. Coughed up some blood, but nothing that caused alarm, and it stopped. But then I got a pain/tightness in the left side of my chest and felt veryyy breathy. Sure enough my o2 levels were dropping a little -- still within an ok range, but it was interesting they were dropping from where they were when we hadn't changed how many liters I was getting. Anyway, they did an EKG to make sure my heart was ok, and then they said they wanted me to take Xanax. I cried. Again. I'm such a mush now! I felt like they thought I was crazy, like oh well, whatever she thinks she's feeling is just her being anxious... I didn't want to take it because I didn't think it'd do anything anyway (OH and I forgot.. after the first dose that didn't do much, they gave me a higher dose right before ICU.. and I went completely loopy like I had just woken up from anesthesia -- I don't remember much but my mom tells me I was pretty..chatty haha) so I definitely wasn't taking a higher dose again. Anyway, the docs came in and listened to my concerns and told me that wasn't the case at all! I was embarrassed to tell anyone I was feeling that way, so I had just been telling God, but then when they asked.. I figured i'd tell them. That was something else God did.. he gave me such reassurance through what they said, perfect timing, perfect words. I am SO thankful for all the docs and their hearts. Anyway, what they said was that when something is going on in the body, the rest of the body reacts and tenses and can cause more damage to whatever actually is going on. With the Xanax, it relaxes the body to lessen the risk of causing more damage. SO relieved about that. (And if all else fails, I can just remind everyone that before they told me where the bleed in my left lung was, I told them where I thought it was based on how I was feeling even when all my levels were ok.. and it was exactly where I had said .. so that makes me feel better, too. Not losing my mind people! Or not completely, at least. :P)
This time, the Xanax worked. I'm still debating if I liked it haha it did make me pretty woozy, and I slept most of it off, but it was SUCH nice sleep, and it relieved all my muscles that normally ache from working so hard to breathe. My headache, and my shoulder knots, and my back... all just relaxed and I could get comfortable in any position.. sooo nice.
Finally we are at today... WHICH HAS BEEN SO GOOD! I woke up early, not feeling tired/weary. We are starting to decrease my steroids, and I didn't have any hardcore shortness of breath episodes again, and no blood at all today. I sat up in the chair for a few hours, had a good breakfast, and felt at ease with my IVs as my fav nurse was my nurse again today. I even went for a walk! YEP! It wasn't that pleasant haha.. but I did it. It's a really weird feeling to have your legs and body be so weak when just last week you were home walking around (minimally but still). But what's even harder to grasp.. is that my legs/body aren't the problem. They could have kept going.. But my lungs were just like nope. It's my lungs that start to feel weird, and of course I breathe sooo heavily that Darth Vader has nothing on me. But it's just weird. I know I've used "weird" way to much in these few sentences but that's the only way I can explain it. Weird. I'm trying to build my muscle and strength back in my body.. but my lungs aren't cooperating. I keep trying to phrase it in a way that explains it... but I can't so I'll just stick with... weird.
BUT I didn't take as long to recover as I thought, and I'm proud that I did it. AND my lungs did feel exercised after -- which I really like, even if the work for it is rough. I guess I'm really starting to learn the meaning of being a fighter. I love that song Fighter by .. Gym Class Heroes? (sorry if i'm wrong!) -- Give me scars, give me pain, and they'll say of me this one's a fighter. -- And this isn't even the worst of it. But I'm going through fighting.
And what I love about the fight especially... is the Lord fights for me. (Exodus 14:14) And that even when I'm feeling like the fight is winning, He reminds me that "His pleasure is not in the strength of the horse, nor His delight in the legs of the warrior, The Lord delights in those who fear Him, who put their hope in His unfailing love." (Psalm 147:10-11)
It's not my strength that keeps God delighting in me. It's not my fight that keeps him lovingly, yet defensively protecting me. It's not my effort that makes the Lord eager to pour out his goodness on me, to bring me through, to lead me to rest..to lead me to victory. It's his unfailing love.
The fight will end victoriously for me because God is love.
Saturday, June 22, 2013
i wanna hold your handdd....
So I started this blog with all the details of this hospital trip.. but I decided to save that for a later entry because 1) there are going to be more details haha, 2) i'm getting tired and i'm hoping that I might actually be able to fall asleep! and 3) i'd rather focus on how loving and nice Jesus is always - even in this.
Just naming a few things --
I had to get 4 ABGs done -- ABGs are bloodwork from the arteries which mean they are further down than regular veins... and it has potential to hurt...a lot. Mine have never ever hurt because I've always gotten them done in the pulmonary function lab of the hospital, and they numb you up really well! Unfortunately, this time I didn't go to the lab and they ordered people to come to my room... After attempts from 3 different people, it was unsuccessful and a little sore, but not terribly. God was nice, of course, and while they were trying to get the blood, He put a song in my heart, and I sang it. Its pretty crazy that God would use what is supposed to be HIS worship, to distract me from my pain, but that's just like Him.. His love is crazy good.
They wanted to send a fourth person that night, but we declined, and instead went down to the PFT lab the next day.. where it's no surprise that Gary (the greatest ever!) made me feel completely calm, confident about the ABG, and numbed my arm so well that I didn't even know the needle was in there! You know those people who just put you at ease when you see their face? They don't even have to say anything and you just feel safe and calm? That's Gary. And I can't tell you enough how I thank God for creating him and putting him in life exactly when I need him.
Unfortunately, later that night while my mom, dad, and I were playing boggle (we never got to get to the scoring part... but if we had I would have kicked their butts..not to toot my own horn or anything..) I started coughing up blood. Like pure blood without much effort. Some of you have seen me cough, and my face turns red, and I cough and cough like a cat with a hairball. That's not how I was coughing. I merely cleared my throat kind of cough, and bam! Anyway, because it was pure blood, and a significant amount, my doctor was called immediately. I also had a CT scan that day. Turns out it showed an area in my left lung that's bleeding. Bla bla bla, here I am in ICU. The doc says I'm not really sick sick that I need to be in ICU but the unit right under it, like for patients too sick for the floor but not enough for ICU, I couldn't go to because of my CF. So that's good too! Not to mention, when I went for the CT scan, they had to put in another IV to be able to inject contrast into me for the scan. They didn't take the IV out just incase we needed it for later on... and sure enough -- they're using BOTH IVs in ICU because one of my meds takes 4 hours to run and we wouldn't be able to run all the meds on one IV. God's provision shines through again!
Anyway, thanks for reading my updates for whoever made it this far -- although this is nothing compared to how long I usually write hahah. As for now .. I'm going to snack on the butterfinger (yuuuuuum!) my sis and bro in law brought me and bugles.
OH!! last thing..duh... I feel like this stay I've gotten a lot more..weak. not physically (well yes physically, but that's not what I mean), more like mentally. I want to be a warrior but I feel like im complaining a lot more, and not seeking God as I used to. I miss my puppies a lot... and just want to go home to my own things... and blaaa I could go on and on and on. Anyway, I was praying and crying, asking God to just please hold my hand. I know he is even without me asking.. but still. The next morning I read a small devotional from Jesus Calling... The devo is like a little note written from God based on the Bible.. I love it.. anyway.. what did it say? -- Focus on me so that you won't miss me holding onto your hand so tightly -- Jesus <3
Jesus holds my hand (even when i'm complaining) because God is love.
Just naming a few things --
I had to get 4 ABGs done -- ABGs are bloodwork from the arteries which mean they are further down than regular veins... and it has potential to hurt...a lot. Mine have never ever hurt because I've always gotten them done in the pulmonary function lab of the hospital, and they numb you up really well! Unfortunately, this time I didn't go to the lab and they ordered people to come to my room... After attempts from 3 different people, it was unsuccessful and a little sore, but not terribly. God was nice, of course, and while they were trying to get the blood, He put a song in my heart, and I sang it. Its pretty crazy that God would use what is supposed to be HIS worship, to distract me from my pain, but that's just like Him.. His love is crazy good.
They wanted to send a fourth person that night, but we declined, and instead went down to the PFT lab the next day.. where it's no surprise that Gary (the greatest ever!) made me feel completely calm, confident about the ABG, and numbed my arm so well that I didn't even know the needle was in there! You know those people who just put you at ease when you see their face? They don't even have to say anything and you just feel safe and calm? That's Gary. And I can't tell you enough how I thank God for creating him and putting him in life exactly when I need him.
Unfortunately, later that night while my mom, dad, and I were playing boggle (we never got to get to the scoring part... but if we had I would have kicked their butts..not to toot my own horn or anything..) I started coughing up blood. Like pure blood without much effort. Some of you have seen me cough, and my face turns red, and I cough and cough like a cat with a hairball. That's not how I was coughing. I merely cleared my throat kind of cough, and bam! Anyway, because it was pure blood, and a significant amount, my doctor was called immediately. I also had a CT scan that day. Turns out it showed an area in my left lung that's bleeding. Bla bla bla, here I am in ICU. The doc says I'm not really sick sick that I need to be in ICU but the unit right under it, like for patients too sick for the floor but not enough for ICU, I couldn't go to because of my CF. So that's good too! Not to mention, when I went for the CT scan, they had to put in another IV to be able to inject contrast into me for the scan. They didn't take the IV out just incase we needed it for later on... and sure enough -- they're using BOTH IVs in ICU because one of my meds takes 4 hours to run and we wouldn't be able to run all the meds on one IV. God's provision shines through again!
Anyway, thanks for reading my updates for whoever made it this far -- although this is nothing compared to how long I usually write hahah. As for now .. I'm going to snack on the butterfinger (yuuuuuum!) my sis and bro in law brought me and bugles.
OH!! last thing..duh... I feel like this stay I've gotten a lot more..weak. not physically (well yes physically, but that's not what I mean), more like mentally. I want to be a warrior but I feel like im complaining a lot more, and not seeking God as I used to. I miss my puppies a lot... and just want to go home to my own things... and blaaa I could go on and on and on. Anyway, I was praying and crying, asking God to just please hold my hand. I know he is even without me asking.. but still. The next morning I read a small devotional from Jesus Calling... The devo is like a little note written from God based on the Bible.. I love it.. anyway.. what did it say? -- Focus on me so that you won't miss me holding onto your hand so tightly -- Jesus <3
Jesus holds my hand (even when i'm complaining) because God is love.
Wednesday, June 19, 2013
Whoever said roids were bad didn't have CF
Welllll.. I havent blogged in a million years, so I figured now would be the opportune time to. I got admitted to the hospital last night. I was working extra hard to breathe, and my oxygen wouldn't stabilize even though we were using more and more supplemental o2. Anyway, here I am, on IVs and o2, definitely already doing better than I was last night -- still have a ways to go of course, but definitely improved. They gave me solumedrol (sp?) -- which is basically prednisone that goes right into your IV. That is some great stuff. Last night my doc told me she didn't hear much air movement and was concerned, but today she said she hears air movement and that I "needed the 'roids!" hahah I couldn't agree more!
I've already gotten two blood draws, other lab tests which will remain secretive because they aren't exactly ..lady-like -- but feel free to use your imaginations on that one, an X-ray, an EKG and an echocardiogram. Everything seems to be ok so far, just waiting on the results of the echo which we will probably get tomorrow. God is of course so nice through this all and is helping me just rest. I usually get very, very stressed about my port IV because not a lot of nurses know how to properly care for it and we can't have it be jeopardized. Well.. definitely less stress because I'm not being disconnected. I need fluids, so in between antibiotics and sterioids, I just remain hooked up to fluids which elminates the worry of anyone flushing it incorrectly, etc.
Also I am EXTREMELY thankful and in awe of my parents. Last night my mom slept maybe and hour. MAYBE. and that was on a really uncomfortable chair. But did she complain at all? Nope. I am so overly relieved that she's here with me, and that helps me rest a lot more, too, knowing that shes overseeing everything. We both got to take naps this afternoon for about 2 hours without interruption which was wonderful!
Tonight, my dad came bearing gifts! It is so stinkin' hot in this room and we can't change the temperature despite our 4:00AM attempt at googling how to set out thermostat. It was to no avail.. but we found out today that the temps actually controlled by floor from somewhere else, not individual rooms. Anyway, the hotness was why I didn't sleep last night, and it lended itself to being the second reason my mom couldnt sleep either. Tonight, the hero of the Gorsky clan brought my mom a cot to sleep on, and a fan (AND it's pink!) I never thought there would be a day where I was actually looking foward to bed time while I was in the hospital.. crazy!
So thankful for their love and dedication <333
Anyway, that's basically the update. Will keep you all posted for anyone who's reading this.
I am taken care of because God is love.
I've already gotten two blood draws, other lab tests which will remain secretive because they aren't exactly ..lady-like -- but feel free to use your imaginations on that one, an X-ray, an EKG and an echocardiogram. Everything seems to be ok so far, just waiting on the results of the echo which we will probably get tomorrow. God is of course so nice through this all and is helping me just rest. I usually get very, very stressed about my port IV because not a lot of nurses know how to properly care for it and we can't have it be jeopardized. Well.. definitely less stress because I'm not being disconnected. I need fluids, so in between antibiotics and sterioids, I just remain hooked up to fluids which elminates the worry of anyone flushing it incorrectly, etc.
Also I am EXTREMELY thankful and in awe of my parents. Last night my mom slept maybe and hour. MAYBE. and that was on a really uncomfortable chair. But did she complain at all? Nope. I am so overly relieved that she's here with me, and that helps me rest a lot more, too, knowing that shes overseeing everything. We both got to take naps this afternoon for about 2 hours without interruption which was wonderful!
Tonight, my dad came bearing gifts! It is so stinkin' hot in this room and we can't change the temperature despite our 4:00AM attempt at googling how to set out thermostat. It was to no avail.. but we found out today that the temps actually controlled by floor from somewhere else, not individual rooms. Anyway, the hotness was why I didn't sleep last night, and it lended itself to being the second reason my mom couldnt sleep either. Tonight, the hero of the Gorsky clan brought my mom a cot to sleep on, and a fan (AND it's pink!) I never thought there would be a day where I was actually looking foward to bed time while I was in the hospital.. crazy!
So thankful for their love and dedication <333
Anyway, that's basically the update. Will keep you all posted for anyone who's reading this.
I am taken care of because God is love.
Monday, April 1, 2013
april 1 but this aint no joke :P
So today I was reading "Jesus Lives" devotional.. it's by the same author as "Jesus Calling" (Sarah Young) and I realllyyyyyyy recommend both of them -- sooo good! Anyway, this is the part of today's passage that God really pressed on my heart.
"THE VERY NAME I USE TO ADDRESS YOU - BELOVED - PROCLAIMS HOW DEARLY I LOVE YOU. I showed you the full extent of My Love by enduring humiliation, torture, and death for you. No greater love than this is possible, or even conceivable.
You have tucked into your memory many experiences of My unparalleled Love. I want you to dwell on these memories: Enjoy them over and over again! This practice will help convince your doubting heart that My extraordinary Love is really yours - every nanosecond of this life and throughout eternity."
Now if you ask me, I wouldn't say I necessarily doubt God. haha of course I'm a little bias :P but seriously .. this makes me wonder what am I NOT trusting God with? Where can I trust him more? But it also makes me think... not even dealing with doubt -- just with the "many experiences" of his "unparalleled love" -- how quickly I forget them and abandon them. I sooo easily turn to what's happening right now, and how things aren't going how I want, etc.. but maybe today isn't a day to focus on my future.. maybe today is a day that I'm supposed to be joyous in my past. Kind of like when you watch a home-video of when you were younger, or those chats with your family recalling those funny stories you almost forgot about. "This is the day the LORD has made. We will rejoice and be glad in it." - Psalm 118:24 (NLT)
I'll only name a few on here.. But I encourage you to make your own list! And if you REALLY can't think of anything.. then look in the mirror and see yourself. This action alone means that God woke you up today. He has been pumping every beat of your heart, and inflating your lungs with every breath. He has maintained your senses (like your vision to be able to see yourself haha) and every other bodily function .. ones we haven't even discovered yet. And if that's STILL not enough... He's been dedicated in doing this every day of your life for the past (insert your age here.. don't worry I'm not asking you to tell anyone :P) years.
Ok soooo my favorite God memories areeee...
When God took care of me in ICU. Actually ironic because I was so in and out of it that I can only remember the doctors saying I would need a respirator, and a few other grim things. I remember people crying, and I remember asking God to help me and NOT need a respirator.. and after that I can't remember very much until I started to get better and the docs came in and told us they didn't know what happened, but things were turning around. I LOVE that even when I can't be actively praying, or "doing my part" in getting better.. God takes care of me anyway. Even when I'm sleeping, even when I'm unconscious, or too sick, or whatever! -- when I can't ask for what I need.. God already knows and is eager to provide it. "And my God will meet all your needs according to his glorious riches in Christ Jesus." - Philippians 4:19
My first and so far only (emphasis on so far) road trip. Of course I got sick right before it. Big fight with parents bc they were worried and didn't want me to go .. bla bla bla - teenage drama sitcom of me crying, them worrying, bla bla bla. lol i know i've talked about this one before but just to recap -- they were so worried because with CF there are things that regular hospitals tend not to know. For example, when using saline in the lungs, healthy people can have normal saline. CF people can't. It has to be a certain percentage otherwise it will basically drown them. (Almost happened to me during surgery, but shocker -- guess what! God protected me! I can't say the same about that doctor who almost did it though... :P) Anyway, the night before my almost cancelled road trip.. we find out that there's a CF specialty hospital right near my hotel! I got to go on the road trip all because God planted that hospital there and thankfully.. i didn't visit it.
This one may seem less.. but it's just something that fills my heart lately. Blue skies. I really love waking up and just seeing that beautiful blue sky with white fluffy clouds. Starts my whole day off on a good note.
Times when God has used me. LOVE that!
And last (that I'm writing on here.. certainly not last of the list haha) but certainly not least the ENTIRE OHIO trip. I know I was going there for a dangerous/possibly impossible surgery, but.. God made it really fun! To highlight a few of my fav parts.. waking up from surgery to God music, playing worship music in my hospital room with the music therapy woman and my parents (who pitched in with maracas! haha), and after starting to get better from the flu -- BREATHING! and when I say breathing.. I don't mean in it the "I'm thankful for having the function of breathing" type way .. I breathed like I never have. It felt like I didn't even have CF. LOVED it! What a totally God-filled trip that was! And one of my fondest memories :] (if you wanna hear more about it, ask me because i obviously love to talk a lot .. haha but seriously! the stories are def good)
anyway... if you've made it all the way to this point congratulations! You can add God giving you patience to your list of God memories hahah
I have memories with my Lord Jesus because God is love.
"The LORD is near to all who call on him, to all who call on him in truth." Psalm 145:18
Thursday, March 7, 2013
read me.
hello again! I have a lot to fill you in on, but right now there's just ONE thing i wanna talk about. ill save the catching up for next time.
I was talking to my sister today about how God is good and for some reason God brought this to my mind. People constantly pose the question of "if God is good, how can (insert whatever here) happen?" in my case.. if God is good, how come you have CF, or why hasn't he cured you?
To be COMPLETELY honest, i'd have to say i don't know. I mean i know that it's for his glory and purpose, because Jesus doesn't allow a single second more suffering for his followers than is necessary for his purpose. so let's say there's some grand reason that i have cf, which i believe there is - i just don't know all the details of it -- as soon as that grand reason is finished -- so is my CF. not a seccconddd longer. i know it's kind of hard to grasp, but that doesn't make it any less true, or any less amazing.
So i know that theres this good reason for my CF besides all the "little" things like making me stronger, being able to help/sympathize with others, and establishing character and hope. (Romans 5:3-4 3 Not only so, but we[a] also glory in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope.) But then God reminded me of how personal he is at the same time. Yes, i want my life to be about him and HIS glory.. but i think it's sooo nice how he still gives us victories at the same time.
Now I don't mean this in a prideful way, but how many people can say they've danced at Madison Square Garden, or at Continental Airlines Arena?
Not everybody that you walk up to on the street can say they have. Now how much cooler is it, how much more victorious and fulfilling that I have... WITH cystic fibrosis.
I have cystic fibrosis, and i've danced for the women's Liberty basketball team. I have CF and I've danced for the NETS. I have CF, and God gives me victory over it.
What will God give you victory over if you choose to let him?
Hardships, CF, (insert your suffering here), never have the advantage because God is love.
John 1:5 The light shines in the darkness, and the darkness can never extinguish it.
I was talking to my sister today about how God is good and for some reason God brought this to my mind. People constantly pose the question of "if God is good, how can (insert whatever here) happen?" in my case.. if God is good, how come you have CF, or why hasn't he cured you?
To be COMPLETELY honest, i'd have to say i don't know. I mean i know that it's for his glory and purpose, because Jesus doesn't allow a single second more suffering for his followers than is necessary for his purpose. so let's say there's some grand reason that i have cf, which i believe there is - i just don't know all the details of it -- as soon as that grand reason is finished -- so is my CF. not a seccconddd longer. i know it's kind of hard to grasp, but that doesn't make it any less true, or any less amazing.
So i know that theres this good reason for my CF besides all the "little" things like making me stronger, being able to help/sympathize with others, and establishing character and hope. (Romans 5:3-4 3 Not only so, but we[a] also glory in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope.) But then God reminded me of how personal he is at the same time. Yes, i want my life to be about him and HIS glory.. but i think it's sooo nice how he still gives us victories at the same time.
Now I don't mean this in a prideful way, but how many people can say they've danced at Madison Square Garden, or at Continental Airlines Arena?
Not everybody that you walk up to on the street can say they have. Now how much cooler is it, how much more victorious and fulfilling that I have... WITH cystic fibrosis.
I have cystic fibrosis, and i've danced for the women's Liberty basketball team. I have CF and I've danced for the NETS. I have CF, and God gives me victory over it.
What will God give you victory over if you choose to let him?
Hardships, CF, (insert your suffering here), never have the advantage because God is love.
John 1:5 The light shines in the darkness, and the darkness can never extinguish it.
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