Glad God is My Physician

I miss the days of pediatrics.  It’s true that in pediatrics they try harder.  They fight harder so that you can live life to the fullest at your healthiest. Somewhere along the lines there is an age gap.  Those that get ill are either children or the elderly.  Kids when they get sick are terminal or they grow out of it.  CFers, we are a class forgotten, in and out of the hospital all of our lives, at every age.  Stuck in the age gap, there is limited entertainment for us here.  I miss the courtyards with playhouses, the rooms with color, the library with movies and games.  I miss being greeted with smiles and unrelenting optimism.  Now when I ask, “it gets easier right?” or tell them “I will get better.”  They shrug their shoulders and avoid an answer.  

That is why I am glad that God is my physician.  He tells me that one day I will be better, one day it will be easy.  He can make those promises with confidence because He has the power to make miracles happen.  Even if I am not healed until I reach Heaven, I can still hold on to the promise that Heaven is near.  I have a thirst and a desire for a better life than this world can offer me. I love that with God as my physician He is allowed to invest and become personal with his patients, that He loves me as His child.   He feeds my passions and inspires me to persevere.  I am not just a medical record number.  This is not just His job.  My life is more than a number, my age is more than a statistic. 

I have great doctors, but there are rules, rules they must follow.  These rules protect them.  I am not saying they are doing anything wrong and God does use them to take care of me, but I do not have to put my faith in them.  I am allowed to hope and believe in something more than they can offer.  Their words wont build me up or break me because I was made for a purpose better then they can promise me.  

I Am What I Believe

I believe in one God who died for my sin and that Christ is my savior and father.  

I believe we are responsible for everything we do no matter how we feel about it. 

I believe your mistakes are what make you who you are and that every choice I make says something about me.  

I believe selfishness is the root of all evil and that selflessness is the way to healing.  

I believe high maintenance is not necessarily a bad thing.  

I Believe life doesn't give you the people you want, it gives you the people you need. To help you, to hurt you, to love you, to leave you; to make you into the person you were meant to be.  

I believe fate decides who walks into your life, but you decide who you let stay, who you let walk away,& who you refuse to let walkout..  

I believe life brings you trials and that good can come from the suffering if you don't waste it.  

I believe my pain will never compare to the pain Christ paid for me on the cross.  

I believe in miracles and in the responsibility to help ourselves.  

I believe knowledge is overrated and wisdom is underrated. 

I believe love is used often but not given enough.  

I believe the ones you love are always taken away too soon. 

I believe that just because someone doesn’t love you the way that you want them to doesn’t mean that they don’t love you at all.  

I believe it takes a minute to like someone, a day to love someone, but a lifetime to forget someone.  

I believe that marriage is forever and that diamonds are to be upgraded every ten years.  

I believe accessories make the outfit and a girl can never have too many shoes or handbags.  

I believe that there is no hurry to grow up because it is bound to happen.  

I believe you’re never too old to play.  

I believe traditions give us stability but change makes us grow.  

I believe everyone is a basket case sometime.  

I believe to be remembered is greater than to be known.  

I believe that we don't have to change friends if we understand that friends change.  

I believe life goes by quickly and that no moment should be overlooked.  

I believe that if you get a chance you should take it, if it changes your life you should let it, because nobody said it would be perfect, they just said it would be worth it. 

I believe no matter how good a friend is that they will hurt you and you must be willing to forgive. 

I believe in dreaming big and making a way. 

I believe that no matter how weak you feel you can always find the strength to help someone else. 

I believe everyone should be an organ donor because one saved my life.  

Day 5

Fridays are a day to look forward to in most atmospheres; the hospital is unfortunately not one of those.  Friday means it’s almost the weekend, the weekend means nothing happens, that means two days of sitting and waiting.  One virtue you would think I’d have acquired by now is patience, that would be a negative.

So random thoughts for today….

The cafeteria prices are ridiculous.  Yesterday I purchased 3 pieces of pineapple for $5.38.  Talk about extortion.   That whole supply and demand principle works.  The lines are never ceasing in there and trust me, its not because the food is that good.

I have a tan line already!  Of course it’s from my sock :/  that makes it anti awesome.  I know what my project is over the weekend.  Even that baby up.

I had pulmonary function tests today.  My lung capacity started at 42 and has now reached 57 PTL!!  I would like to see it reach the high 70’s.  That is my usual baseline. 

So far I have found the best way to start a conversation about faith is through music.  I have had two RTs (respiratory therapists) comment on the fact that I was listening to Christian music.  One of them, his wife is a pastor; the other is not a believer. 

I got the room that the “Sticker Girl” had.  Apparently there is a CF patient who loves to put stickers on things.  I call it happy vandalism.  I have found 22 of them so far. 

I got a care package today from the Living Breath Foundation.  It came with all kinds of snacks and such.  There was one of those paddleball toys.  You know the one with the ball attached by a piece of rubber to a paddle and you are supposed to see how many times you can hit it.  So far, 6 times.

Hope you are all having a great Friday!  

Short Account

Alright trustee blog followers it is time I get myself into gear.  I fail at this whole blogging thing.  This is how I am with projects, I have good intentions, but… I don’t always get to the final results. 

Because I don’t like reading long tediously detailed accounts of other peoples lives I am sure you would not appreciate the recount of mine, so in order to avoid a long post I am just going to share some random thoughts and excerpts. 

- It is slightly ironic that I would be hospitalized during CF awareness month, but then again it feels like I spend most of my time in the hospital so perhaps it isn’t that ironic after all.

- I am drowning in more than one way down here.  My lungs are full of mucus, which is making it difficult to breathe, but I have faith that we will get this under control soon.  I already feel a little bit better.  I think that is because of the sun though.  Why do I live in OR again?

- But I am also in over my head with schoolwork.  Amazing how missing a couple days of studying can cause such a set back.   Did I mention the lack of motivation as well?  Something about being sick, you wish you could use it as an excuse to sit around and watch TV all day while people dote on you.  Well… welcome to the real world.

- The weather is beautiful here, but I stick out as an Oregonian.  While the rest of the town is in jeans and a sweatshirt, I am soaking up my vitamin D in shorts and a t-shirt.  Granted it is in the 70’s!

- If there is one thing I hate more than being sick, it is looking like I feel ( sick ).  So… Bring on the sunshine and give my skin some color! Which leads me to…

- I did sneak out to the mall today.  Retail therapy never hurt a girl.  While walking around I found a lot of motivation to start working because there are so many cute summer trends I need to try!

- Walking around on campus has been fun because all of the students are here.  I feel like I fit in.  It’s nice to go unnoticed sometimes.  Especially since when I am inside the hospital I wear a mask and everyone stares. 

- I am quickly going through my stash of apples and power bars and missing Diet Pepsi greatly.  I might go on a quest to a market tomorrow to find some!

So much for the interesting… I appreciate your prayers and support!  I know that I am experiencing peace because everyone is praying.   

CF Acrostic

CYSTIC FIBROSIS

by Me

Crusading for a cure, their
Yearning hearts beat while

Searching for answers they
Try to break free from the
Internal suffering they face.
Courage camouflaged soldiers
Fight; surrendering to nothing,
Immersed in the battle. Their
Bodies betrayed by this
Ruthless disease that ‘s trying to
Overtake and run their life.
Slender silhouettes bare the
Identity of these crippling individuals
Striving to win this fight.

You Are Loved

You are loved.  You can’t escape love; you can’t outrun love, despite how broken and bitter you feel, you will always be loved.  The God of the universe loves you so much He sent His only son to die so you could live.  The God of the universe loves you right where you are.  Despite what you have done, despite what you are doing, He loves you.  No strings attached.  There is nothing you can do to make him love you more and there is nothing you can do to make him love you less.  He created the heavens and the earth and everything in between.  He created you!  He created you with a specific plan.  People have 5-year plans, 10 year plans, God has an eternal plan.  If you choose to follow that plan your life will always have purpose.  If you follow His plan you cannot fail.  If you follow his plan you will be satisfied. Stop trying to do it on you own.  You alone will fail.  Surrender to the one who loves you when no one else will.  His love has proven to desire what’s best for you.  It is safe to trust Him.  Don’t be afraid to love the one who loves you.  

Down the Path of Pain

I wish my heart rested more soundly

With my foundation in you

Instead it beats rapidly trying to save me

I’m drowning in the flood of my tears

I’m calling your name

Knowing you’re already here

It feels almost too late,

I’ve given into fear

When do I accept my fate

Placing my life in your hands

You guide me straight

Down the path of pain,

But my burdens you’ve claimed

My scars are reminders of what I’ve gained

Strength, courage, and virtues of faith

My God you saved me

From my own destruction

Treacherous were my ways,

Death my fate, but your death

Took my sin away

Your resurrection the promise of an eternal life

Free from suffering

May my body be a vessel for your 

Glory alone, not my own

Though my body may fail me

You never will

This pain, you’ve felt

This struggle, you’ve overcome

This diagnosis, you’ve cured

This sinner you love

This daughter you’ve claimed

No longer do the chains of circumstance determine my fate

For you God alone have numbered my days

So I Ask

I pray everyday for healing

I’m still here so I know there’s meaning

Would it be easier if you revealed it to me?

When you see me broken it breaks your heart

Please heal me and put me back together part by part

And allow me a healthy brand new start

So I ask

Why do you let me live this way

Every breath I take is a strain

My body is full of aches and pain

Yet you ask me to fight to stay

Who is it that I am fighting for

You, me, my family, or a future

There has to be something more

Blessed by Friends

I have people ask me how I cope.  They say things like wow you seem so happy and okay with everything.  The truth is I am not sure if it is coping or if it is just a front.  Its like my friend Leah said ““Having CF isn’t really a choice, so I just cope because I have to.  There really is no option.” 

You enjoy friends who know how to make you feel taken care of and can laugh at your awkwardly serious comments.  Laughter is sometimes the only thing that can keep you from crying so you try to make light of a situation that is scaring you.  You want people to understand so you make comments in a joking manner and when they laugh with you it is a relief because maybe the situation or the truth isn’t as cruel as it seems. 

Friends that embrace you for who you are and can find ways to graciously take care of you are one of the many blessings that get you through.  As a fighter you hate to ask for help, but it is more than a pride issue.  As someone who is sick all the time you feel like a constant burden and the last thing you want is to draw more attention to yourself.  It’s not that you are oblivious to your dependency; you just hate feeling like all you do is take take take from everyone. 

This last weekend I was blessed to have a group of friends like this.  I have always had people in my life that were gracious and have made a point to pray for me and visit me when I get sick and to check in on me, but to see a group of friends my age do that, it meant the world to me.  I realize that only my other friends with CF understand what I am going through, but this particular setting and group of friends made me feel like they get it.  I felt like they understood me.  I don’t feel good most of the time, but I try my hardest to laugh and have fun and be as normal as I can, but sometimes after you fight for so long you just want someone to acknowledge it.  Not only did they acknowledge it, they made a point to show me that they care and are going to take care of me. 

To that group of friends, Thank You!!

How Can I Believe in God?

People ask me all the time how I can believe there is a God.  I suppose they expect me to question it because I have Cystic Fibrosis.  How can there be a God that allows you to suffer like that?  The truth is that whether I believe there is a God or not would not change my circumstances.  If I didn’t have my faith then I would be walking through this life the same way as the rest of the world, bitter and broken.  I have never questioned God’s existence.  I know that I have been blessed to suffer for Christ.  Through my suffering His glory can be revealed.  One of my favorite verses is John 9:3 “It was not because of his sins or his parents' sins," Jesus answered. "This happened so the power of God could be seen in him.”  With or without God I suffer, but even though God allows me to feel the pain I also have the hope that the pain won’t be wasted, that the fight is worth it, that I will overcome it, and that despite the worst pain imaginable I will still be filled with Joy! 

So I ask you, why wouldn’t I believe in God?

I Believe It, Do You?

As I was sitting in church last night I began thinking about charismatic faith and what that would look like played out in my life.  I believe in God and I believe in what He can do, but sometimes I am afraid to claim it as boldly as I should.  I have heard it a thousand times, but it was the one thousand and oneth time that it finally hit me.  God doesn’t need me to defend Him.  All He asks is that I believe.  Claim it and believe it and trust Him to do it.  If I truly do that with the most sincerity, I will be healed.  I have been afraid to proclaim that God can and will heal me in fear that if He doesn’t, somehow I would diminish the name of Christ. 

I used to tell myself that God hasn’t healed me because the people around me don’t believe it.  That they wouldn’t know how to accept it.  I thought that I just wasn’t raised in the right church, I didn’t have the right people praying, I need to go to where God is moving.  God is everywhere and can work through anyone.  What a naïve thought process.  It is not my job to worry about anyone else believing it.  There heart isn’t for me to change.  God didn’t ask me to save them or change them.  He asked me to sacrifice my life for Him to use.  That I can do. 

God is going to heal me.  I am not afraid to claim that.  Whether you believe it, pray along side me, or write it off, God will do it.  

How Would Your Life Change If Fear Wasn’t An Option?

We were not created to live in fear.  In my life there are two things that I do not have a choice to be afraid of.  Needles and Blood.  Two common fears.  I began to wonder what my life would look like if I didn’t have the choice to live in fear of anything.  I know that I have nothing to fear, but lets face it, I am 100% human and scared of so many things.  I know that God is in control; I know that He will protect me, but I am still afraid of the unavoidable pain that comes along with following Him.  It isn’t that I won’t live through it, it’s that I would just like to bypass some of it. 

I learned a long time ago that worrying never helps the situation and is never worth it, yet so often I am blinded of the fear that I live in.  Fear of the little things.  I spend so much time in the extremes.  Either I feel completely defeated or I am living recklessly trying to experience everything I can in life before time runs out.  I worry about the same things as everyone else, security, school, my future, rejection, and most of all letting those closest to me down.  As much as my faith is in God, I am afraid of the misled faith people might have in me. 

I know in my heart that God is not withholding anything good from me and that I cannot fail in what He has asked me to do, so why do I stress and fear failure?  The desire of my heart is to be right where God wants me and if I truly feel that way then why do I question if I will succeed? 

I cannot fail at what God has asked me to do so I will no longer live in fear of falling short.  Be encouraged for the same is true for you!

You Know You Have CF When

So some of you may remember this from a year or so ago... I thought it was appropriate to post here.  I did not write this, but I have to say whoever did summed it up very well.  Enjoy!

You know you have CF when: 
1. You do a happy dance when you hack up a huge wad of mucus, show your dad and he gives you a congratulatory high five! 
2. You know more medical terms by the age of ten than most people know their whole lives 
3. You have your pharmacist, family doctor, CF doctor, the emergency room that you always use or your medical insurance company as numbers 1- 10 on your cell phone's speed dial 
4. You have multiple scars from PICC lines, IV's,Ports, and other 'experimentations' as the doctors like to call them 
5. You are so used to getting blood drawn that you are the proverbial 'test dummy' for all the new nurse fresh out of college—"you don't mind do ya?!" 
6. You have antibacterial gel in your purse, in your car, on the kitchen counter, in the bathroom, in your friend's dorm, their car—heck everywhere!
7. You can smell smoke hundreds of feet away and go searching for the source so you can thump them upside their retarded heads!!!! 
8. You quite adamantly think that smokers are THE dumbest people you know—I always love it when they walk up a flight of stairs huffing and then say they NEED a cigarette! WHAT?! 
9. You laugh at those who whine & complain from a common cold or worse yet stay home because of it! 
10. You are truly sad for those cute little lab mice who must suffer from experimentations so we can have medicines to help us live—for about 1 second than you jump for glee because they came up with something to help you breathe! 
11. You can instruct the nurses how to work the IV machine at the hospital 
12. Some of the most memorable times with your friends/family is hanging out and wasting time at the hospital 
13. You make people wince because of the sound of your cough 
14. The checkout lady at Wal-Mart has confidently told you that she just got over what ever I have and Theraflu worked for her, which you calmly and sarcastically say—I will make sure to tell my doctors. 
15. You can sleep through anything—you perfected the skill by being shaken by your vest all of these years 
16. You are a multi-tasker by need. While doing you're vest you MUST eat breakfast, do your nebulizers, homework, make-up, straighten your hair and have a conversation with your mother about your most current ache in your chest all at once or it would never get done.(haha maybe not all this at once but u get the point) 
17. You learn by the age of 13 that life is a gift and most people don't see it's pretty paper! 
18. You have used your vest multiple times as a torment device for your dog by blowing air at him and watching him try to catch it in his mouth, entertainment device for the kids because a shaking vest is a fun 'toy' and a laughing tool for the adults when you try to talk to keep up with the conversation, even on the maximum setting. 
19. Many adults have commented to you that you are very wise for your age—yippee! 
20. You really did have a midlife crisis at the age of 18—what the heck do I do now? I wasn't suppose to live this long! 
21. If Albuterol and Xopenex were living things you would marry them because according to you they were sent from heaven by God to us CFers for a little help in the breathing department—I heart Albuterol! 
22. You laugh at your friends and their newest drama—hah! Don't we all wish it was THAT easy! 
23. You get truly irritated at people who don't put yes as organ donors on their driver's license—what the heck are you going to do with them when you're dead, huh?! (haha:]) 
24. You make peace with God at an early age. 
25. You feel as if there is ALWAYS someone worse off than you somewhere 
26. You are constantly on the go, realizing that time stands still for no one. 
27. You grew up thinking that everyone in your class does machines, nebulizers, inhalers, sprays and pills for an hour or two each morning before they came to school and an hour or two after. 
28. You are more scared of losing your loved ones, family and friends then you are of dying yourself. 
29. You realize at an extremely young age that you can buy everything but time and as a CFer that is the one thing you would love to have! 
30. You have also learned who your real friends are because most people can't take the pressure of being around a person who has CF 
31. You truly feel that God gave you this for a reason and, dang it, you're going to make Him proud!

Who said that when you turn 18 life can’t be bliss?

Today I snuck into the pediatric unit at Doernbecher.  It brought back a lot of memories of my childhood, but it was like seeing it through new eyes.  I was walking the halls and I felt like I was suddenly in the shoes of my mom.  Looking around the walls are full of art and hope.  Bulletin boards and pamphlets line every nook.  How to prepare your child for surgery, how to cope, how to …  I walked into the play room and my first thought was why do we not have these at OHSU?  I am proud to say that I stole a picture of Ariel to color and I just finished the beautiful work of art.  When did we become too old to color?  Too old to create?  Too old to hope? 

There was a display of wishes written on stars and I wondered when we became to old to make a wish?  On another wall there was a collection of PostSecrets written by kids with CF.  Reading these  I was amazed at how inspiring and encouraging and uplifting the words of these children were.  Somewhere between the line of pediatrics and adult care the voice of hope was stolen.  Instead of hope we were told to accept the brutality of life.  Now I realize that most people in there 20’s don’t spend time in the hospital.  They don’t get sick in such severe ways.  At 20 we are all invincible.  But Hope doesn’t have an age limit.  If you are 7 or 70 hope is an option.  You are an inspiration.  Live it, breathe it, and don’t let the world tell you any different. 

In case you forgot, it is okay to color outside the lines

Everybody Else is Doing It

As someone who loves to write as much as she loves to talk I began questioning why I have not started a blog.  Perhaps because I wasn't sure I knew what to say or maybe it was that daunting thought of all my thoughts being out there for others to read?  Yes, I think it was the latter.  For all of you that pray for me I thought this would be a great way to update you on how God is working in my life!  Thank you for all of your prayers and support over the years and especially these past few weeks.  I cannot explain the difference that it has made, but it has been all the difference in the world.  I have always wanted to write down the story of my life, but the truth is I don't always remember that much so this blog is as much for you as it is for me.  I hope that this blog is an encouragement to you and an example of what an amazing God we have!