a little update, because i owe you one

Hi friends! It's been a busy week out of the hosptial. Wait, what?! I forgot to post an update about my hosptial stay. Ugh, please forgive me.

So, update. I owe you one. 

Last Wednesday, December 10th,  I was released from the hospital with 84% lung function. Jesus' timing is so perfect. I was let out the night before the big Northern California storm. I've been waiting for this storm for seven years. God knows me too well. Anywayssss... December 10th marked exactly one full month in the hospital. All I can say is that Jesus sustained me... and He did it well. I have no other explanation to how I made it cooped up for that long. 

I came in the hosptial with 83% lung function and a consistent four day, high fever. My lung function fluctuates a lot and we aren't sure why. My lung volumes (which determine how much damage cystic fibrosis has had on the longevity on my lungs) were normal, my breathing sounds were clear, no wheezing or crackling in the lungs, I felt fine, fevers went away, my sputum cultures came back clear (no bacterias were found), CT scan showed only a little increase in mucus plugs in my right upper lobe since last years scan,.. everything seemed to look pretty normal, Yet my numbers weren't increasing drastically like they should have on iv antiobiotics and four times a day airway clearance/breathing treatments. My baseline is 91% so my doctor's goal was to get my lung function back in the high 80's or 90's before he released me. Since I was there for a month and my numbers showed slow progression from the 60's to the mid 80's, they freed me. Praise Jesus.

It's been five days out of the hosptial and I went back to clinic for a follow up appointment with my primary doctor. I repeated my lung function test today and it's at 96%!! My small airways increased from 56% to 86% too. This is incredible news. This is just proof that Jesus knows my needs, hears my prayers, loves me dearly, and hears the prayers of everyone who were diligently praying over me and my health. This isn't just chance. This is Jesus. He was in control of every detail of this hosptial stay and I couldn't be more thankful for that. Thank you Jesus for your constant protection over my life and my lungs.

I never thought I would admit to this, but I am so greatful for this recent one month hospital admission. Jesus used this hosptial stay to teach me a handful of things » The true meaning of joy; being content in every circumstance. Patience. The concept of being still and trusting in His, unknown plan. The power of prayer and soely allowing God to work in me and in others in situations that aren't ideal. 

God strengthened my heart and taught me how to be fully dependent on Him and Him only. 

The downside to being up is my inside is empty of the one thing my heart truly needs. When I feel invincible, a million miles from miserable, it's always all about me. 

AMEN. Oh, the truth in that. 

Being confined to a hosptial room for a month made me appreciate my home, my bed and my city so much more. I complain about walking up and down two flights of stairs everyday to bring my dog out to pee, but now I find myself volunteering to do it. I appreciate the little things more because small things that I  take for granted on a daily basis like fresh air, the sound of rain and even walking were withheld from me for a month. I never realized how much I crave those things.

 God allowed me to suffer for a month because He loves me. He knew I could make it- and I did. He promised He wouldn't let me down- and He didn't. He never promised a life without pain, but He promised He'd take care of me. We're a team. When I'm weak, He's strong. When I'm empty, He fills me. When I'm worried, He gives me assurance. When I don't know what to do, He does. I like to say that He's the better half of me;) 

Joy and life abundant becomes so much more apparent and special when we experience pain. We value the small things in life, the happy, when we know what pain feels like. It's hard, but it's worth it. Joy. Comes. In. The. Morning. 

Thank you Jesus for allowing me to fight this ugly disease called Cystic Fibrosis and for allowing me to experience life and life abundant!!

"For this sickness will not lead to death, but to God's glory." // John 11:4 

constant reminders

Hospital: day 28.

My lung function dropped one percent since Friday and is now at 82. My small airway numbers are increasing which could be why it's taking so long for my big airways to increase in percentage. All the mucus in my small airways are moving out and up into the big airways which may be causing my big airways to have some mucus plugs (obstruction). Honestly, I don't really why my lung function isn't going up fast. My lungs suck at being lungs. Tomorrow morning, the doctors will come in and let me know the plan. The doctor on call this week told me that she is advocating for a discharge. (Praise the Lord)

I've got some cool stories for you though.

I had this respiratory therapist last week, who I've never met before, walk into my room on tuesday morning extremely frazzled. She walks in and I give her a big smile and ask her how her day was going. She looked at me and said, "Today is just not a good day. I had someone yell at me, my other patients aren't cooperating, I've been running around trying to get everyone's meds and I'm just so stressed!". I reply, "aww I'm sorry you're day isn't going to well. let me tell you, we all have those days where things are just hard. I thought I was going home yesterday but my lung function didn't go up. I know what hard days look like." 

As I was putting on my vest, I taught her about the new nebulizer I was using, I informed her of the order in which I take my treatments and I set it all up by myself. She was shocked. She said, "Oh, it's so nice to have a patient who helps me out today. I'm just so stressed and you're just doing this all by yourself!! It's nice to have some assistance and one who gives me a little break. Thank you!!" The tone of her voice changed from frantic to relieved. 

After my treatments were finished and she was about to leave, she turned around and spoke, "You know, I know you don't want to be here and you really wanted to go home yesterday but I'm so happy you're here. I needed you today!" 

In the midst of the disappointment of not being able to go home, Jesus reminded me that even when I don't understand, even when I don't see it, He's using me. I didn't do anything different that morning. I just did my treatments like I do every single day and He used me. That's neat. 

A few days ago, an old friend from high school, Connor, who I haven't talked to in three years (wasn't even sure he still knew who I was), showed up unexpectedly at my hosptial room with a friend of his, Leia, who I've never met before. It was a lovely surprise. "We saw you were in the hosptial through twitter and your blog. We just felt like we needed to come visit you and pray over you. We read all your blog posts and your attitude and the joy you radiate is so incredible and you're so inspiring." As Leia introduced herself she said, "You don't know me but I am obsessed with your blog. Your posts are so awesome and I started a make-a-wish club at my school and everytime you post something I always talk about it with the group. We love you and your writing." 

I was so shocked. I had no idea so many people loved or even read my blog. This was the highlight of my week. There God goes again, using me when I don't even know it.

Today, I was ridiculously excited for my lung function test because I was so hopeful and confident that my numbers were going to be in the high eighties. They weren't.

Today, I'm just frustrated. I am so desperate to go home. Wedneday marks one full month in a hosptial room. I'm having insane amounts of cabin fever here. 

So, I go to God with my frustration and it went a little something like this "K God, love you, but what the heck, man? I've been here for a freaking month and I've worked so hard to get my function up. I don't get it. I get that you're using me. You continuously remind me through texts, Facebook messages and Twitter that the joy you've given me is so radiant and people recognize it. They see you through me. Jesus, I want that to be enough understanding for me but 28 days in a hosptial room? You can't use me anywhere else?! ughhh I'm not blaming you. This isn't your fault. You're working in me and allowing me to be a light right now and that's awesome. It really is. I just really want to leave. I know you want me to get out of here just as bad as I do. Jesus, let me go home please." 

As I'm laying in bed reading Forgotten God by Francis Chan, the doctor on call comes in with a fellow (kind of like a doctor in training). The fellow was new. After we discussed the medical plan for a few minutes, she goes, "You know those quotes on your door, I love them! One of them helped me today actually. The one that says "God's plan for your life far exceeds the circumstances of your day." I walked by your door this morning and I was a little stressed and then I saw that and was like "ahhh I'm going to be okay today." Thank you for that"

My heart became completely full. I was like, "there you go again God with your little reminders..." 

One of the coolest things I've experienced this hospital stay are the endless amounts of messages I've received from people I don't even usually talk to telling me how inspiring I am. To first handedly experience God working through me is something so humbling, so encouraging and so fulfilling.

Though it seems like it, I'm not always positive and happy. I get frustrated, angry (oh do I get angry), exhausted and sad. I want to be left alone 80% of the time and I lack a lot of patience and self control. I am thankful for His constant reminders that His plan outdoes mine and I am making an impact on people's lives because of Jesus. That's something to smile about. 

"Be the kind of light that makes people squint so hard that they can't even see you anymore." This. This is my goal. I would not be me without Him.

surely it was for my benefit that i suffered

Today, my lung function showed 83. The deal was, 88 or above and then I can go home. Tomorrow, my family leaves for Disneyland as I continue my fight to get my lung function back up in the hospital. 

Tonight, my mom bought be a caramel brûlée latte from Starbucks and I got to take a walk outside. I sat in front of Stanford Hospital in the crisp, cold air with adorned wreaths, lit up poles and light strung Christmas trees surrounding me and my heart grew heavy. Christmastime and cold, rainy weather are my two absolute favorite things and I'm being withheld from them. I want to go Christmas shopping. I want to go up in the Santa Cruz mountains and cut down a tree. I want to fall asleep to the sound of rain and wind outside my bedroom window. I want to watch Christmas movies and drink peppermint hot chocolate from my Santa mug. I want to drive around the city and look at all the houses decorated with lights. I want to experience the joy filled month of December outside the confinements of a hosptial room. 

I'm completely exhausted. I'm so homesick. I wish I could say that joy is obviously present tonight, but I feel so empty. Up until this moment, God has given me that peace that surpasses all understanding and He's revealed to me through little things why I'm still here. Maybe I have to wait until tomorrow to understand, but right now, I don't. I'm confused. 

"My eyes grew weak as I looked to the heavens. I am being threatened; Lord, come to my aid!” But what can I say? He has spoken to me, and he himself has done this. I will walk humbly all my years  because of this anguish of my soul. Lord, by such things people live; and my spirit finds life in them too. You restored me to health and let me live. Surely it was for my benefit that I suffered such anguish. In your love you kept me from the pit of destruction" // Isaiah 43:14-17a 

"Surely it was for my benefit that I suffered..." In the midst of complete confusion, I find it so amazing how just a few words can deliver such a great amount of comfort. Weakness and suffering are so real, but so is God. I am incapable of going through suffering alone. I need full dependence on Jesus in these times of hurt because His strength is what carries me. Not my own. Though I may not understand this, I am reminded that He is witholding me from destruction. I'm so grateful for that. I find peace in His words and knowing that He is almighty God.  

It's okay to be disappointed. But pain is only temporary. This is where the hurt and the Healer collide. Joy always comes in the morning. 

You must think I'm strong to give me what I'm going through. Well, forgive me if I'm wrong, but this looks like more than I can do on my own. I know I'm not strong enough to be everything that I'm supposed to be, I give up. I'm not strong enough. Hands of mercy, won't you cover me? Lord, right now, I'm asking You to be strong enough for the both. Well maybe that's the point, to reach the point of giving up... 'cause when I'm finally as rock bottom- that's when I start looking up and reaching out // Strong Enough by Matthew West 

"For my comfort in my suffering is this: Your promises preserve my life." // Psalm 119:50

xo, Jules 

still stuck in the hospital {day twenty-three}

A week without blogging felt like a piece of my life was missing for little.

You would think I have all the time in the world since I have been confined to a hospital room for the past 23 days (minus that one special day I got to go home), but I have been extremely overwhelmed with school. Though it's been ridiculously stressfull and time consuming, I'm happy to say that I've accomplished a lot this past week. 

•completed four practice exams for my Read 211 class 

•finished all my homework for the quarter

•signed up for winter quarter 2015

•officially sent in my essay and application for Cal Baptist University 

Being stuck in this hospital room has been sort of a blessing in disguise. I'm the queen of procrastination and God knows I am the worst studier. I get distracted by the silliest things and sometimes I just accidentally fall asleep (it happens). This isn't the first time this has happened... last quarter, I was also admitted into the hospital during finals week. Sounds to me like God knows exactly what He's doing. He knows that being stuck in a hospital room with really only nothing but a laptop and wifi is the only way to really force me to get my work done. Well, it worked. I see You, God. I see You. 

I think last time I updated you, my lung function was at 69.... well, two days later it increased to 73. Then, we waited a week to do another PFT (pulmonary function test) which was on Monday, and my lung function was at 82%!!! Praise Jesus!! 

Normal lung function for patients with cf is anywhere between 80-95%. So, 82% is good, but it's not MY good. I was a little frustrated to why I couldn't go home on Monday and why my doctors are adamant about discharging me with anything less than 88%. My doctor explained it to me like this. 

My baseline is 91%. They know my potential, they know that I can get back in the 90's. Every two years, someone with cystic fibrosis loses 1 to 2% of their lung function. For every percent, I gain two years of my life. The difference between 82 and 88 may seem so small but waiting it out and spending weeks in the hospital, fighting to get my lung function back up to my baseline is gaining me a longer life expectancy. The difference between 82% and 88% is 12 years I am potentially adding onto my life. When the doctor explained it like this, I understood. I finally, after 3 weeks of never receiving a solid answer to why being in the hospital is so vital compared to doing my treatments at home, I got it. If missing my trip to Disneyland with my family this upcoming weekend, if spending a Thanksgiving in a hospital room, if having to be constantly hooked up to an iv and sleeping in an uncomfortable hospital bed for 3 weeks to a month means being able to live a longer, healthier life, I'll take it. Anyday. 

I'm so grateful for my cf team here at Stanford and my parents who are always on top of my disease. I'm grateful for my friends and family and even people I don't know who are in constant prayer over my life and my lungs; who push me and encourage me every single day. These people are the reason I am not on a lung transplant list, the reason that my lung function is so good, the reason I beat my life expectancy of 18 years. I don't think you realize that a huge factor to why a lot of kids are so sick, so young and have to spend every other month in the hosptial or hooked up to oxygen everyday is because they don't have parents or a good support system that stay on top of their disease. I ask my nurses daily why so many young kids with cf are in the hospital so often with such poor lung function and they all say it's because they don't do their treatments; they don't have people pushing them to do their treatments when they're tired or visiting them everyday when they do have to be in the hospital. Having a solid support system is so vital to keeping healthy and sometimes I take it for granted. I'm immensely thankful that I have a God who loves and protects me every single day of my life... and I'm eternally thankful for the friends, family and medical team He has placed in my life. I mean it when I say, I wouldn't be alive without you.

I have a lung function test tomorrow at 1. If you could all be praying for me, that would be rad. If it's above 88, I'm free and get to go to Disneyland on Friday. If it's anything less of 88, I'm staying and my sweet friend Mckenzie is going to spend the weekened with me at the hospital. I sleep on this: If we win, we praise Him; If we lose, we praise Him. God is good, all the time; and all the time, God is good.  

xo, Jules