What a year for a new year...

Oh, 2011.  I don't even know where to begin.

I remember going in to 2011 and trying to imagine what God was going to do in it.  The funny thing is that you can never imagine what God is going to do... He always blows my mind.  I was sure I'd be diagnosed by now, and I was also sure that there was no way I was going to stay sane if I wasn't diagnosed by now...  because life "undiagnosed" just couldn't possibly last that long.  Well, it has... and I'm still relatively sane, I think.  Okay, I guess it'd be better to say I'm not utterly depressed and I sure don't feel hopeless.  I wouldn't say I act like a normal human being... but I don't think I ever have...

Even though I'm definitely not doing any better physically, I've learned that it really is possible to "keep on keepin' on" when your circumstances stay bad for a very long time.  Now, if this is where you're expecting to hear that you can do ANYTHING with a positive attitude, then, my apologies.  A positive attitude by itself would have been long gone before the year even started if that's all I was getting by on.  Eventually I would have realized that all I had worked for was falling apart, and that I wasn't well enough to "work harder" or "chase after my dreams" or to fix what had gone wrong.  I'm not even sure what went wrong.  I can't tell you what day this started,  and I've finally figured out that nothing in my power can fix it.

... but I know Jesus, and I've felt His love and peace.  I've read His words and I know that blessed assurance that death is defeated, that God really is in control, and that He has the power to do things beyond my imagination.  I know that God doesn't enjoy seeing us suffer, but His Word always reminds me that the ending will be worth it.  Even though 2011 brought so many struggles with it (that aren't even over yet), God used it to teach me so much about Him and His will, and to draw me closer to Him.  Because of Jesus, I can wake up each morning and be joyful, because He's given me another day to praise Him.  That doesn't mean I'm always happy despite how I feel, but when I'm down about things, God encourages me through other people and through His Word, and that's what has gotten me through the year... and even made it a year worth looking back on.  I didn't think I could make it through another year of this, but God showed me that He can get me through one day at a time, and that's all I ever need.

"If for this life only we have hoped in Christ, we are of all people most to be pitied."

-1 Corinthians 15:19

"Blessed be the God and Father of our Lord Jesus Christ! By his great mercy he has given us a new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who are being protected by the power of God through faith for a salvation ready to be revealed in the last time. In this you rejoice, even if now for a little while you have had to suffer various trials, so that the genuineness of your faith - being more precious than gold that, though perishable, is tested by fire - may be found to result in praise and glory and honor when Jesus Christ is revealed. Although you have not seen him, you love him; and even though you do not see him now, you believe in him and rejoice with an indescribable and glorious joy, for you are receiving the outcome of your faith, the salvation of your souls."

- 1 Peter 1:3-9

I'm going to try and write another post about everything that happened this year, but I've been feeling very sick (the fever is worse) so it might take a while for me to post anything... at least anything that makes sense to normal people whose brains don't feel like they're melting away.

Christmas.

I love Christmas, but it's not an easy time of year when you're sick.  I think the hardest part about it is that there's always this expectation that Christmas has to be all great and wonderful... because it's Christmas! You know, just some added pressure to have as perfect as a day as possible.  And, of course, I've always thought that if something that's supposed to be great isn't as great as expected, it was probably all my fault.

... but I've learned a whole lot this year, and one of the things I've learned is that feeling guilty for how difficult a difficult time is usually just makes it much more difficult than it was in the first place.  Knowing that it's okay to not be okay (even on Christmas) is essential for surviving a long, draining, mysterious illness... at least for me.

Christmas really wasn't terrible, and I definitely don't mean to make it sound like it was!  It was actually really good... and really hard, too.  On Christmas eve, we get together with my dad's side of the family to eat food and exchange gifts.  I love both of those things, and I especially loved that my 9 year old cousin was dressed as Santa because she wanted to pass out the gifts to everyone.  But, not having the energy to play with my 9 year old cousin as much as I'd like is getting really old.  We go to the 10pm service on Christmas Eve, and my parents always tell me that I can stay home and rest instead, but Christmas without church makes me sad, so I get all layered up and head out with them... but I still don't understand why we can't wear pajamas to that service.

Christmas morning is my favorite, but waking up with a fever for the second year in the row was a little discouraging, because I never thought I'd still be in the same situation an entire year later.  My brother, sister-in-law and I still wait at the top of the stairs until my parents say we can come down, and then we all open presents together, which is always really fun.  I survived the morning, but by the time some more family came over for dinner, I was feeling really sick and had to lay down for awhile.  I'm really not a fan of having to rest when I could be having fun with my family.

The best part about Christmas though, is that we get to celebrate the birth of Jesus.  Presents and Christmas trees are great, but if that's all Christmas was about, it'd be really depressing, because presents and trees can't save anyone.  Christmas is the reason why it's okay that I'm not okay, because I know that the God who sent His son to save us in the most humble and unexpected way is in complete control of my life.  Christmas is why I can still be filled with joy, even when the day we celebrate it includes fevers and unwanted naps... and I really hope everyone else experienced that joy this Christmas (I also hope that you had a Christmas tree and exchanged some presents - with at least one homemade present - because I'm pretty sure Jesus enjoys seeing us enjoy a good Christmas tree and a happy, grateful time of unwrapping and playfully throwing paper and bows at each other, too.).

Letting Go.

One of the hardest struggles that I've had while being sick and at school is being content with not having as much energy as I used to.  It didn't bother me as much at home, but that's because I wasn't surrounded by a bunch of college kids who somehow have this ability to constantly be doing something, and that something is hardly ever sleeping (except on Saturday mornings, when the dining hall doesn't even open until 10:30 due to the fact that everyone except for myself is still sleeping).  The thing is, I don't get jealous about their energy, I just realize that I used to be one of the most energized of them all.  And then I feel guilty.  Yeah, I know, it's weird.  I don't just miss it, I start getting mad at myself because I feel like I've "changed."  Of course, I'm brilliant when it comes to ignoring the fact that I'm sick and that I didn't randomly decide to see what it's like to live a much "calmer" life.  I'm also really good at finding old videos on Facebook of my friends and me doing the "Evolution of Dance" (we practiced so much that I had it memorized...), which is normally followed by a pitiful "I used to be so much more fun!"

Of course I miss being healthy - I think it'd be unhealthy to not miss living a healthy life - but, I'm slowly learning that in order to be content with my "current lifestyle," I need to stop trying to live up to whatever super bubbly, energetic, aerobically fit expectation of myself that I have... and instead I just need to focus on glorifying God today, and on doing what I'm able to do today.

Yeah, I'd like that energy back.  I already have in mind a few things that I'd like to do, including... learning to break dance (I have big dreams).  But, I think it's about time to let go of clinging to my " before getting sick" self and work on clinging to God instead, because He tends to have a much better perspective than I do (there's always a possibility that His plan for my life involves break dancing...).

So... here's to being a 21 year old who enjoys long runs walks, reading, writing, knitting, and conversing and laughing (and sometimes crying) with a friend or two over a cup of hot tea (preferably sleepy time tea... if it's actually time to go to sleep).

Oh, and by the way... this is encouraging:

Satan may be sly but on some things he is stupid, because he fails to see that all his attempts to despoil the godly are simply turned by God's providence into occasions for the purifying and strengthening of faith. God's goal for his people in this age is not primarily to rid them of sickness and pain, but to purge us of all the remnants of sin and cause us in our weakness to cleave to him as our only hope. - John Piper

Done!

The last few weeks of the semester were crazy, which is why I've disappeared from the "blogging world" for a little while.  Writing papers and taking finals is always interesting when you have a fever, but... I'm done!  I made it, and now I'm happily resting at home for the next few weeks!  I am SO excited that I actually made it through the semester with everything that's going on!  It was extremely difficult at times, but I've learned what it means to rely on God, and I've also learned that He'll do amazing things when you do... like get you through a semester of school while somehow keeping your grades up.

While I was at school, we were in touch with my oncologist, who suggested that I go to Mayo Clinic.  In order to go to Mayo Clinic, you have to apply as a patient and then be accepted by them.  I mailed back my patient application on Tuesday morning, so now we're just waiting again.  If you haven't noticed, being sick involves a lot of waiting.  It's probably my least favorite part, but I'm getting more used to it.  I just read 2 Peter this morning, and in chapter 3 it talks about how people will start scoffing and saying that Jesus' promise to come back isn't true because it's been so long and he hasn't come back yet, but then Peter writes "But do not ignore this one fact, beloved, that with the Lord one day is like a thousand years, and a thousand years are like one day. The Lord is not slow about his promise, as some think of slowness, but is patient with you, not wanting any to perish, but all to come to repentance." -2 Peter 3:8-9.  I know that it doesn't exactly have to do with being sick, but it helps me to remember that God's timing is perfect, even when it seems like things are moving reaaally slow!

I have a whole lot to write about, so I plan on posting a lot more during break!

Deck the Halls!

I was all bummed out this afternoon.  Then... I watched this:

Thankful.

I love how God still gives me so many reasons to be grateful, even in the middle of an extremely difficult (and seemingly never ending) time.

Here are some of the random blessings that keep me going (in no particular order):

1. My family.  I can't explain how relieving it is to be able to come home to a place where everyone understands what's going on.  My parents understand that just because I'm sick every day, doesn't mean it's become normal or easy (so many people seem to think this...).

2. Morning.  I love morning.  I love waking up to a new day, pretty sunrises, morning devotions, breakfast... everything about morning makes me all excited and happy.  A lot of times, I already don't feel well when I wake up, but I get so excited about everything that it makes it a little easier to take that first step out of bed... even if it's on some incredibly achy legs.

3. Honey nut cheerios.  Seriously.  They're delicious.  And I think it's really cool that Garlock gives us an unlimited supply of them (even if they do mix them with regular cheerios...).

4. People who "ooze Jesus."  You know those people who are joyful, make sacrifices for other people, and are so great to be around that you just want to find out what makes them tick?  Yeah, they're my favorite.  

5. The people who work at Garlock (our dining hall), especially Mary, the lady who gets my almond milk for me every morning.  I knocked over the cereal bar and caused a giant frosted flakes explosion last week, and yet they still make sure that all of my special "allergy friendly" food is there for me.

6. Classes.  Being sick and missing a year has made me even more of a nerd than I was in the first place.  It has also made me realize how much of a blessing it is to be able to go to college.  I just really love to learn!

7. Music.  Sometimes I just need to turn on my Ipod and drown out the world... or other people's terrible choices of music.  For the millionth time, I don't care that "it's 5 o' clock in the morning and the conversation got boring."  You should have gone to bed like 7 hours ago.

8. Prayer.  I get to converse with my Savior whenever I want.  Need I say more?

9. Snow!  We had our first snow of the season (that actually stuck) the other night.  Everything was white and pretty!

10.  The "schedule" button on the side of my screen that will allow me to post this on Thanksgiving, when I won't want a thing to do with my laptop, the internet, or Blogger.

HAPPY THANKSGIVING!

Happy Thanksgiving!

I am HOME for Thanksgiving break!  School has been absolutely exhausting these past few weeks because of my fevers, aches, and pains, so I'm reaaaally enjoying just being able to rest and not do very much.  My body definitely needs to chill out for awhile!  I've spent today resting, reading the chronicles of Narnia, and just enjoying being home.  I have a lot that I've been wanting to write about, but I've just been feeling too sick to write anything intelligent.  It's frustrating.  I hope everyone has a very happy Thanksgiving though!

"Give thanks to the LORD, for He is good; His love endures forever."

~Psalm 107:1

Cereal Boxes and Doctors

When I was younger, I used to save up box tops from cereal boxes and send them in to get whatever toy they were advertising on the back of the box.  I remember they always said "please allow 6-8 weeks for delivery."  6-8 weeks!?!  That feels like forever when you're 8 years old!!  I used to get so excited that I'd check the mail everyday... starting the day after I sent them in... just in case.  And of course, after a few weeks had gone by, I would completely forget about it.  Then, one day I'd get a toy in the mail that I had completely forgotten I had ordered!  Those were the best days.

3 or 4 weeks ago I called the clinic and sent a message online to one of my doctors there to see what they wanted me to do next.  My doctor never replied to my message, and then she kept calling me during bio lab when my phone was off, so we were never able to actually talk to each other.  At first I was going crazy and I didn't think I was going to be able to stay sane if I didn't hear back from her ASAP....  then, I forgot about it.  I've had a couple of other tests to get done in the meantime, so they've kept my mind occupied when it comes to figuring out what's wrong with me.  Yesterday, I checked my email and I saw a nice little "You've got a new message on MyChart (Cleveland Clnic's website for us sick people)."  I was almost as excited as I used to be when I'd open the mail box and find a toy.  Unfortunately, the message that I got was probably the equivalent of getting the toy and then finding out that it's broken.  All it said was "Sorry I have not been able to reach you. Your breath test results are negative.  I have no suggestions for further testing.  The negative results have been reassuring." 

REASSURING?!?! I don't know about her, but having no reason as to why I feel like crap and have a fever everyday is not what I like to call reassuring!  After a day of freaking out that I wasn't sick again (because that's what I do every time a doctor seems to be giving up on me)/being super frustrated/freaking out that I'm always going to be sick, I'm a little more sane now.  It just takes a day or 2.  And, after talking to my dad on the phone, I now realize that she wasn't trying to be a jerk.  She was trying to pull the whole "but on the bright side!" thing, which gets really old, but at least has good intentions behind it.

We're going to wait until I come home for Thanksgiving break to figure out what to do next.  My oncologist told me that I could go back to see him to talk about having a PET scan if I went to an Infectious Disease specialist and Cleveland Clinic and didn't find out anything, so we might give him a call.  There are also a few other places that my eye doctor has recommended (including the Mayo Clinic), but they all require more traveling.  I'm clueless about what to do next, but at least all of my doctors now actually agree that I'm sick... that's a start.

Breath test results... or not.

A little over a week ago, a wrote about my trip home for my breath test for SIBO.  Well, I didn't say anything at the time because I wanted to wait to talk to my doctor, but the results for that test are instant, so we were able to keep track of my results throughout the entire test.

Prior to the test, the nurse told me that a 10 was considered positive.  Basically, if you have SIBO, the bacteria that's supposed to only be in your large intestine is also in your small intestine, and when glucose comes into contact with that bacteria, hydrogen is produced.  Therefor, hydrogen is only supposed to be in your large intestine during the test and shouldn't show up in the breath test except for when the little flap between the small and large intestine opens and lets a little of it out.  In other words - a normal test result should have one peak, which is when the flap opens, and apparently it should be lower than a 10.  Or at least that's what I understood (I'm no doctor!).

My results were something like: 0,0,1,5,1,10.  Yeah... that's a 10!  The nurse was completely surprised because we weren't expecting it to shoot back up after it went back down to 1, and she went out to tell my doctor, but he was at his other office that day, so she said he'd call me about the test results.  We were really excited and surprised, because, well... we were pretty sure it was positive!  I decided not to tell anyone right away though, because I wanted to wait until I heard from my doctor... I also didn't want to get too excited until I understood what the results actually meant.  But, a few days went by and we didn't hear anything (it turns out that they mail test results unless it's something urgent... I had forgotten all about that), so my dad talked to another nurse who was there... and she said the results looked negative to her!  She said that some people react differently to it, even if they don't have the syndrome.  That's the last we've heard, and I'm assuming my doctor doesn't think it's positive either because he didn't call us.  I've definitely been praying that God will direct them as they interpret it though!  It gets me nervous when results are this confusing...

The test actually is really hard to interpret, so I'm not annoyed with the nurses.  But, I'm very glad that I didn't let myself get too excited about the "positive" results!

Peace.

Today's one of those days where I feel extra cruddy and I start wondering why I don't just act like a normal sick person and curl up in my pajamas with a good book... or just throw a nice little pity party.  These are the days when it feels like nobody actually realizes that being sick actually means feeling sick, because most people here just see me going to classes, the library, or the dining hall like a normal college student.  Then, I start wishing that EVERYONE could realize that my muscles hurt, I'm exhausted, and my brain feels like it's melting from having a fever for a good year.

But... just when I feel like pouting about how nobody understands, I remember...

"... We do not have a high priest who is unable to sympathize with our weaknesses, but we have one who in every respect has been tested as we are, yet without sin."   ~Hebrews 4:15

Jesus gets it.  He knows exactly how I feel.  Sometimes when I come back from class, the first thing I do is plop down on my bed (or the floor...) and rest for a few minutes, and I find comfort in knowing that God is always  there in those moments when nobody else realizes how badly I just need to rest.  God knows every little concern and hurt that I have, and that's what makes it possible for the little pity party that's starting up in my head to be replaced with "the peace that passes understanding."

SIBO breath test and a weekend home :)

Happy November!  I'm not quite sure what happened to October...

It's gotten to the crazy part of the semester, so I've been busy doing that whole college thing... but, I'm a nerd and I absolutely love learning, so I'm really enjoying classes.  In the past few weeks I've been able to dissect a frog, visit a Hindu Temple, and run chromatography on fruit fly heads (which involves killing the flies, cutting off their heads, and then crushing their heads!  It's probably the cruelest thing I've ever done...).  I don't have very much energy, so that makes it difficult, but I always get ahead on my homework each weekend because I know that I get really exhausted by the end of the week. I was really sick and out of it on the day we went on a field trip to the temple, and right when I thought I couldn't feel any worse, some guy came out and started banging on a gong!  Now, it makes me laugh... but it wasn't funny then!

There have been a lot of ups and downs since my last post.  I haven't been able to get through to my doctor at the clinic, and I was starting to feel like we had reached a dead end with testing and trying to find a diagnosis... but... God is crazy awesome, and before long my dad had told me that my eye doctor (very random) was getting in touch with doctors that he thought would be the best for me to see!  Of  course, that would mean more traveling, but it was reassuring to know that not everyone had given up on me.  Last week, we were able to schedule my breath-test for SIBO (I will have more on SIBO in a later post).  I ended up getting to have it done on Friday!  I went home on Thursday evening and had the test in the morning.  The nurse felt terrible when she gave me the stuff to drink before the test, but I made sure to let her know that it was MUCH better than the 4 colonoscopy preps and the several bottles of Barium that I've had to drink so far.  It was pretty much like drinking syrup (it was either glucose or lactulose), and the amount you have to drink is based on your weight, so I only had to drink a tiny bit!  Then, I breathed into a machine thing every 15 minutes for 90 minutes (Cleveland clinic's website said 3 hours... hmm...).  Both of my parents were with me (we tend to travel in packs for testing =P), and, of course, we ended up laughing hysterically about random things, so it wasn't bad at all.  I've never been so thankful for my family's sense of humor than I have been throughout the past few years of being sick... these tests would be miserable without all of the laughing that we do.

My fever was kicking my butt again after the test, but I was able to rest at home which is so much better than trying to rest in a dorm room when you get fevers every day.  I also somehow wrote a paper about how chronic illnesses affect development while I was home.  I do a whole lot of fever-induced paper writing lately.  I'm pretty sure Jesus writes them for me.  On Saturday, I was able to help out  at the Section III cross country championships for a little bit, which was really exciting because my family has gotten to know the officials and the people who do the timing pretty well.  I only stayed for part of it because I was feeling pretty sick, but I was really happy to be there for a little bit!  Oh, and my mom made meatloaf while I was home.  There's nothing like a home cooked dinner in the middle of a crazy semester :)

My doctor is supposed to be calling me this week about the test, so I will write more about it then... we're having a decorating contest for our lounges, so I need to go finish helping (so we can win ;)!

God. Mush brain. Spice Girls?

Heads up: my fever's been worse the past few days, and I feel like my brain is a pile of mush.  If this doesn't make any sense, well... my apologies.

[I'm not quite sure why writing a blog post is what I decide to do when I can't focus...]

On Friday, I was able to get in contact with the Internal Medicine department at Cleveland Clinic.  All of my test results are back (and negative), so we're ready to get moving again.  I was all ready to schedule the breath test for bacterial overgrowth that the GI at Cleveland wanted me to have, and then I realized that I never got a prescription from them while I was there.  My doctor is supposed to call me back tomorrow about that and what else she thinks I should do now, along with whether or not she thinks now is a good time for me to have a PET scan.  That's something that my Oncologist brought up in the spring, but at the time he was pretty sure that my illness was something in the Infectious Disease area, so he told me to see an ID doctor first.  We did that.  Twice.

I'm very excited about being able to get moving along with tests again.  It'd be really cool to find out what's going on someday soon.

On a non-medical note: Last week, I started going to a morning prayer thing that's on Tuesdays and Thursdays.  On Thursday, we read Psalm 37, and I got to this verse and it's been ingrained in my head (or maybe my heart) ever since:

"Commit your way to the LORD; trust in him, and he will act." -Psalm 37:5


It wasn't anything I never knew before. It wasn't like I had some huge revelation about what's going on... just that as long as I've committed my life to God, everything's going to be okay. He's active in my life and in every little (and big) thing that I'm dealing with right now. That's so cool.


Another thing that's not nearly as cool as that, but is still pretty cool, is the show "The Sing Off." For those of you who have never seen it, it's kind of like American Idol, but with A Capella groups and nice judges. The University of Rochester (which is very close to Roberts) made it on the show and now they're into the top half! Last week, they made an arrangement of the Spice Girls, and it's hilarious and 10 million x better than the original. You might want to watch it...

What's going on...

In my last post, I said that I had a lot to write about... well, I do.

The past few weeks have been very difficult.  I've been feeling more exhausted than normal (which wasn't normal in the first place), and I've been having a lot of abdominal pain and headaches again, along with my constant low-grade fever.  I've also been trying to figure out what tests I need to have done within the next few weeks along with staying on top of all of my school work.  Thankfully, I love school and learning, so it's not too hard to motivate myself to do my work.  I'm just slow at it, because I'm so tired most of the time.

On top of all that, I've been completely freaking out about cross country for the past few weeks.  Obviously, I can't compete or  train.  I can do "moderate activity" (whatever that means), but I have to listen to my body and know when to stop... which is a lot harder to figure out than it sounds.  Especially when you have the stubborn, distance runner "grr I can run through anything" mentality ingrained in your head from 9 years of competitive running.

As you can probably imagine, not being able to train or compete for an indefinite amount of time makes being on the cross country team... well, weird.  And hard.  And lonely.  And upsetting.  I realized the other day that there are only 2 girls and 2 guys on the team who knew me when I was relatively healthy (my freshman year).  The rest of the team only knows the "sick" me.  What makes things worse, is how guilty I feel sometimes because I'm on scholarship.  I don't feel like much of a scholarship athlete these days.  I was okay when I wasn't at practice, but then I'd get to practice and all of the depressing, confusing thoughts would make me freak out and get all depressed.  So, my coach told me to take a week off of practice.

I did.  And, I freaked out some more.  I started thinking that maybe God had been trying to tell me that He wanted me to not be on the team anymore... for the past 3 years.   Maybe He had other plans for me, and maybe I was just supposed to trust Him enough to change everything, instead of trying to keep involved with running.  Then I freaked out some more, because I started thinking about that scholarship again, which made me think I was just too afraid to trust God enough to help me afford Roberts in some other way.  Maybe, after all of this, my identity was still way too wrapped up in running.

After approximately 32 million mental breakdowns, I took what I learned from conversations with people who I trust along with my own prayers and devotions... and this is what I realized:

1) God is more powerful than I can even imagine.  What he wants to happen will happen.  I can't stop that, and that is one of the most comforting truths that I know right now.

2) I ask God for His guidance and for His will to be done in my life several times a day.  He knows that I don't think I know what I'm doing, and He knows that all I desire is to do what pleases Him.  He knows I freak out about decisions.  He knows I over think everything.  He knows that I've surrendered my life to Him.... including running, cross country, and everything that has to do with it.

3) Jesus says to focus on today.  Not tomorrow, or next week, or next year... (Matthew 6:34).  That's really all we have, anyways.  Instead of freaking out about what might happen in the future, I only have to focus on today and where God has me right now... the people's lives that I can touch today, the things that I can do today, the things that I say today, my relationship with God today, etc.

4) I don't have to do anything to prove to God that I can live without running/cross country and that He's infinitely more important to me than it (unless He's telling my to do something... then obeying is probably the smart thing to do...).  God knows my heart (better than I do).  And, God might actually be able to use me on the team in some way that I don't understand.  Of course, if God calls me to do anything, than I need to obey Him.  But when He's not saying anything about it... I shouldn't just jump to conclusions.  Of course, cross country is something I need to keep praying about.  Partly for my own sanity.

5) I'm sick, not a slacker (sometimes I forget this).  I didn't plan for any of this to happen.  I'm not making it happen.  I'm not making myself sick.  I'm not making it up.  My illness, even though it's "mysterious", is very, very real.

I really think I need to write all of these things in my planner... and on the back of my hand... and all over my wall....

Or maybe I should just trust God.  My powerful, loving, heavenly Father... who's always going to take care of me.

"What then are we to say about these things? If God is for us, who is against us?" - Romans 8:31

A break. :)

I have so much to say (write?).  I haven't been feeling well, and things have been really rough.  But, I'll write about all of that later this weekend.  For now...

Last weekend was October break, so I was able to go home for the first time since August.  I LOVE home.  I was also able to see my two best friends, who spent the night and listened to me vent about everything I don't like about being sick.  I even got caught up on this years season of "The Sing Off."  And then, while I was watching The Sing Off... I finished a hat that I have been knitting for a very, very long time... and it actually looks like a hat!  And fits on my head!  I was very surprised... I thought my knitting skills were limited to scarfs.

Anyways, here are some pictures from break!

On Saturday, I went to a cross country meet and got completely covered in mud... and I can't even race!

Cookies, tea, and best friends... mmmm :)

Stand on the shores of a site unseen...

God has a way of working in ways that don't make sense to me... or, to anyone else.  Sometimes I forget that.  Most of the time, I expect him to do what makes sense to me.  And, well, getting diagnosed right now makes perfect sense to me.  Getting healthy makes wonderful sense.  Having things go back to how they were... that makes freakin' perfect sense... when I forget that he's got better plans than going backwards.  God wants me to keep moving forward.  God wants me to be open to the change that He's doing in my life.  God wants me to get my joy from Him... not in things that don't last.

God wants me to trust that there's so much more to life than what I see right now.

This is my favorite song (Since yesterday.  Give me a few days, and I'll probably have a new favorite song.  That's usually how it works.), and you should probably listen to it and check out the lyrics.  Josh Garrels pretty much says everything that I'm trying to say.

Josh Garrels - Beyond the Blue

Stand on the shores of a site unseen
The substance of this dwells in me
Cause my natural eyes only go skin deep
But the eyes of my heart anchor the sea
Plumbing the depths to the place in between
The tangible world and the land of a dreams
Because everything ain’t quite it seems
There’s more beneath the appearance of things
A beggar could be king within the shadows,
Of a wing

And wisdom will honor everyone who will learn
To listen, to love, and to pray and discern
And to do the right thing even when it burns
And to live in the light through treacherous turns
A man is weak, but the spirit yearns
To keep on course from the bow to the stearn
And throw overboard every selfish concern
That tries to work for what can’t be earned
Sometimes the only way to return is to go,
Where the winds will take you

And to let go, of all, you cannot hold onto
For the hope, beyond,the blue

Yellow and gold as the new day dawns
Like a virgin unveiled who waited so long
To dance and rejoice and sing her song
And rest in the arms of a love so strong
No one comes unless they’re drawn
By the voice of desire that leads em’ along
To the redemption of what went wrong
By the blood that covers the innocent one
No more separation
Between us.

So lift your voice just one more time
If there’s any hope may it be a sign
That everything was made to shine
Despite what you can see
So take this bread and drink this wine
And hide your spirit within the vine
Where all things will work by a good design
For those who will believe

And let go, of all, we cannot hold onto
For the hope, beyond, the blue

Said I let go, of all, I could not hold onto
For the hope, I have, in you

God > this

The test results are slowly coming in from last week's visits...

So far... all negatives.  Those are just the blood tests though, so we're still waiting on the biopsies.

It's funny, because I didn't expect them to be positive...  yet, I found out, called my dad to tell him, and then started bawling my eyes out.  Every time I have to deal with negative test results and thinking about the "next step," I go back to being afraid.  Not afraid of what I might have, but afraid that I'm not sick.  Or that I'm making myself sick.  Or that I'm just really messed up, and unlike most people, we're hoping and praying for a positive result.  Maybe I'm just weird.  My mom and dad were here last weekend for home coming (which is kind of funny, because we don't have a football team!), and after we helped out at our cross country meet, we sat on my dorm room floor talking about how we've reached the point where we don't even care what it is that I have... we just want to know.  I happened to be getting my butt kicked by my fever that day, so I didn't have any fear that I wasn't sick, because I felt miserable.

If all of the biopsy results come back negative, then we go back to talking to my Internist at the clinic and trying to decide what to do next.  My oncologist said that if my other doctors couldn't find anything, then they'd do a PET scan to look for any deep lymphomas that wouldn't be obvious enough to have found by now.

A lot of people remind me that God can heal me.  I know that He can, but (not to sound even more crazy than I probably already sound...) after 3 years of being sick, I'd love to put a name to whatever I've had.  I always get scared that if I randomly got better, I'd just be even more confused.  It'd be one thing if I had a broken leg and it got better... but everything I have is already so vague and confusing as it is.

I have absolutely no idea what's going on... but... I know one thing...

and that's that God is in control (I think I need to write this on my forehead or something...), and I'm pretty sure one of His favorite things to do is to turn messes into beautiful things.

I've been playing this song on repeat... during my "little runs," hw breaks, folding laundry, etc... you should probably listen to it.

Cleveland Clinic - Round 2, Day 2

I'm sorry it took me so long to post an update!  I literally went straight from getting tests done at the clinic to being back at school... and it was crazy!  I had an appointment with Infectious Diseases on Tuesday morning, and the doctor ordered some more blood tests that I hadn't had done yet (I'm always shocked when I realize that there's something else I haven't been tested for yet!).  Unfortunately, I haven't gotten any results back yet, so we're still waiting to hear on the biopsies and the blood tests.  I also got a pneumococcal vaccine so that I can have a blood test in a couple of months to see if my body produces the right antibodies, and I have to have a breath test to check for a bacterial overgrowth in my intestines in a few weeks (I have to wait 4 weeks after a colonoscopy prep, which is why it hasn't happened yet).  So, there are still a whole bunch of tests going on.

One of my favorite things about being back at the clinic was that I recognized some of the people from the first time I was there.  The guy who drew my blood was the same guy as last time... he's now taken 42 vials from me... we're keeping track!  I also love the people in the red coats.  They're always there to help you if you're lost... or if you have any questions, even if it's my dad asking for a sound track of the relaxing music that is played throughout the entire clinic (which, by the way, they don't sell).

Of course, it was also absolutely exhausting.  I had a wheel chair on Monday after my colonoscopy, so I was wheeled every where I went which helped, but I was still exhausted by the time I left.  It's also really hard mentally, because I just want to know what's going on.  Every negative test result makes me think that I'm doing the wrong thing, and then I get all discouraged and upset.  Every time I see a new doctor that I have to explain everything too I pretty much have a mental breakdown by the time I leave because I realize that what I say and how I say it affects what they think is going on. I'm really good at blaming myself for everything, and I still have to constantly remind myself that God is bigger than this and He's in control.  Sometimes it gets very overwhelming, but...

... if I've learned one thing from this... well, actually I've learned a lot... but one of the many things I've learned is how important it is to be able to be content with what God is doing for you at each moment.  Yeah, there's a lot of yucky stuff going on in my life right now... but at this moment, I'm sitting here in my nice toasty, dry room on a rainy night, I just ate some really yummy soy/dairy free cookies, and I just came from a team dinner at my friend's house... where we ate homemade food, laughed a lot, and did devotions.  Yes, I was tired, and yes, every now and then I was drenched in sweat from that pesky little fever, but I can't let myself get so caught up in what's bad that I forget the good things... because there sure are a lot of good things, and "Every good and perfect gift is from above, coming down from the Father of the heavenly lights..." (James 1:17).

Anyways, here are some pictures of this week's visit at the clinic!

This is the view from our room!  We were able to stay at the clinic this time, which made life so much easier.

This is a statue of a person... made of letters? 

Basically the main lobby of the clinic... if you go down the hallway straight ahead, there's a Starbucks on your right.  Seriously.

I thought it was funny...

My parents thought it was funny how big I made the wheel chair look.

Finally eating the sweet potato I had been craving since I started my  liquid diet 2 days earlier....

Good night!

Cleveland Clinic - Round 2, Day 1

Hey everyone!  My colonoscopy and upper endoscopy went well.  Hopefully there won't be anymore... at least until I'm 50!  The biopsy results will take a few days. The greatest disappointment: after wanting to eat anything and everything for 50 hours and not being able to... eating was the last thing I wanted to do by the time I woke up.  I did get that sweet potato that I've been wanting, it's just taking me forever to eat it because my body's still recovering from the procedures and the anesthesia.  We're staying at the clinic this time instead of at a separate hotel, which makes things much easier for us.  We're hoping to be able to leave tomorrow, but we have to wait and see how my appointment goes in the morning.  I'll write more when I'm feeling up to it... for now, it's time to rest and watch some Back to the Future. :)

P.S.  Please keep praying!  Thank you SO much!

Cleveland Clinic - Take 2

My parents and I are heading back to Cleveland Clinic after church tomorrow... I can't believe that it's already time for me to go back!  I have my (FOURTH) colonoscopy on Monday, along with an upper endoscopy, so I'm on my "clear liquids only" diet now.  I can't wait until I wake up on Monday afternoon after it's all over so I can eat a sweet potato. mmm....

I also have an appointment with infectious diseases on Tuesday.  Please be praying for the doctors and for my parents and me... we could really use a diagnosis. 

National Invisible Illness Week

This week is National Invisible Illness Week!  You can learn more about it at http://invisibleillnessweek.com/.  They have a "30 things"  survey for people to fill out on their blogs, so I decided to participate so you can learn a little more about life with my "mystery illness."


1. The illness I live with is: An undiagnosed one that the doctors are still trying to figure out.


2. I was diagnosed with it in the year: Hopefully it'll be this year!

3. But I had symptoms since: 2008

4. The biggest adjustment I’ve had to make is: Limiting what I do each day because of my illness and trying to be a college student at the same time.  Going from an 18:20 5k runner to not being able to make it through a 30 minute easy run pretty much sums up how it's affected me in every other aspect of life, too.
5. Most people assume: I'm better because I'm back at school.  Not true.

6. The hardest part about mornings are: Getting out of bed after not being able to sleep throughout the night.

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: My Ipod Nano.  Listening to christian music helps me to keep my perspective on life when I'm feeling down about being sick.

9. The hardest part about nights are: Being so tired yet not being able to sleep.  Achey nights are the worst!

10. Each day I take __ pills & vitamins. (No comments, please) I only take one right now!  My doctors have stripped me of all my meds, seeing as we don't know what's causing what. I'm a huge fan of not having to take so many pills each day anymore!

11. Regarding alternative treatments I: think a mixture of alternative and traditional can be beneficial, but I do think that people should listen to the people who know about the treatments the most (doctors) and take their advice and not jump onto the bandwagon of thinking that all alternative treatments are better for you than other treatments.

12. If I had to choose between an invisible illness or visible I would choose: Sometimes I wish it was visible so that people could tell that I really feel like poop instead of assuming I'm okay, but I think it'd be a terrible mistake to think that people who have a visible illness have it any easier.

13. Regarding working and career: I'm a college student, but I'm not taking as many credits as I would if I were healthy.  I'm definitely not able to have a job on top of college right now!

14. People would be surprised to know: that telling a sick person that they can tell they are doing better because they look good is probably the worse thing that you can say to them.

15. The hardest thing to accept about my new reality has been: Not knowing what to do to make things better.  I like to be able to take control and fix what's wrong, but being undiagnosed has made that impossible.  It's taught me that the only thing I can do is to keep trusting God.

16. Something I never thought I could do with my illness that I did was: come back to school!

17. The commercials about my illness: ... there aren't any, seeing as I'm still undiagnosed.

18. Something I really miss doing since I was diagnosed is: running cross country.

19. It was really hard to have to give up: Running, and everything that goes with it.  I never realized how much it affected my entire lifestyle until I couldn't do it anymore.

20. A new hobby I have taken up since my diagnosis is: Swimming! I never knew how to swim until I was too sick to run, and now I enjoy swimming laps!

21. If I could have one day of feeling normal again I would: Dance like crazy, go for a long run (while jumping in puddles), hang out with friends, play ultimate frisbee, roller blade, etc.

22. My illness has taught me: so much about my faith and what it really means to trust God and live for Him.  It's also taught me to have compassion for other people who are suffering in ways that I didn't understand before.

23. Want to know a secret? One thing people say that gets under my skin is: "I'm glad to see you're feeling better!"

24. But I love it when people: Ask me how I'm doing... it means a lot to know that people care and are curious about how I feel and what's going on in my life.  I'm also a huge fan of hugs.

25. My favorite motto, scripture, quote that gets me through tough times is: "Trust in the Lord with all your heart and lean not on your own understanding." -Proverbs 3:5
I can always use a reminder that God knows exactly how I feel and that He has a plan that is so much greater than anything I can even imagine!

26. When someone is diagnosed I’d like to tell them: God is going to work through this in ways that will blow your mind.

27. Something that has surprised me about living with an illness is: Life keeps going.  That might sound weird, but it's a strange feeling to spend a week in the clinic and then step back out in the real world and realize that things are exactly the way they were before, even though you feel like you've been in an entirely different world.

28. The nicest thing someone did for me when I wasn’t feeling well was: send me notes and packages in the mail!  There's nothing like a surprise in the mail!

29. I’m involved with Invisible Illness Week because: I know what it's like to have an invisible illness, and it's made me realize how many people are affected by them.

30. The fact that you read this list makes me feel: Excited! It's a cool feeling to know that other people are curious about life with an invisible illness.

Learning to Love.

Sorry for the lack of posts.  I'm not the most efficient "homeworker" because of my fever, so I don't have very much free time.  I've survived my second week back at school though!

The past couple of weeks have been hard and sometimes very discouraging, but today's one of those really cool days when I see that God has done a lot throughout the past three years of me being sick.

If I had to pick one thing that I feel like God has bonked me on the head with over and over throughout the past few years, it's the simple truth that the "christian walk" isn't easy.  I know, it's all over the Bible, but I learn from experience... and God knows I had to experience literally falling apart to understand what "fighting the good fight" actually means.

I could just accept what I've learned and move on, but... I think that'd only be half of what God actually wants me to learn out of this.

God's given me so many reasons to be confident that He makes the impossible possible and to believe that "the easy way out" normally isn't the way He wants me to go.  There's no reason for me to believe that being sick is the only struggle I'm going to face, and there's no reason for me not to take what I've learned and apply it to the rest of my life... especially when it comes to loving others.  I have no problem liking other people.  Liking everyone isn't hard for me to do, but liking isn't loving.  Loving others means befriending the people that everyone else has seemed to given up on... the people that everyone else would rather keep their distance from because they are hard people to love... and trusting that God will give me the strength to do that.  It'd be easier to live comfortably, but... "The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold." (Psalm 18:2). 

Back to school!

This week was my first week of classes since I left on medical leave last October!  I moved in last Saturday, and classes started Monday.  It was really hard to make the transition from the clinic to school at first.  8 days felt like forever at the clinic, and I didn't know it'd be so hard to go from being surrounded by very sick people to healthy college kids again.  However, I've never been so thankful for having so many awesome people around me!  Some of my favorite people on campus are the maintenance people.  I got to know them really well from my summer that I spent here on the paint crew, and they all stop to ask how I'm doing whenever they see me walking around campus.  I also got a hug from one of the ladies who swipes our cards every day at the dining hall... it made my day.  Even the guy who fills the salad bar said "Hey! You're back!"  There are plenty of helpful people around campus and I'm so grateful for that.  I also ended up in a dorm room right next to some of my friends, and we didn't even plan it! 

Of course, there are still some incredibly hard parts about being back at school.  My fever has been kicking my butt and I've become quite the insomniac.  I lay in bed for 8.5 hours every night, yet I hardly sleep at all.  Sometimes it's because I'm in pain, but sometimes I just lay awake for no reason.  I'm really hoping that will get better soon... because it makes me feel like I'm walking around in a daze all of the time.  I'm only taking 4 classes and a lab this semester, so I'm staying on top of homework seeing as I never know when I'll be feeling very sick and won't be able to do it.  I'm also still on the cross country team.  Sometimes I get very discouraged when I'm there because I'm around so many very healthy, fit people and I guess it just really makes me realize what I can't do because of my illness.  I have to always remind myself that it's about what God's doing through it, not what I'm not doing.  My coach has me helping out with the "club team," which is something that is brand new this year.  Helping out the runners (especially when they're discouraged and I get to encourage them) makes things better.  I guess my ridiculous amount of experience in being discouraged can actually be a good thing sometimes.

I still have lots of ups and downs, but I know that God has brought me here and that things really are going to be okay.  Not to say I don't get sad that I'm still sick, because I do... but that just reminds that I don't have to try to be strong enough to do this on my own, because God will give me all the strength that I need... one step at a time...

Home... for a day.

We came home from Cleveland Clinic last night!  I had an appointment in the morning and then we ate our last lunch at the clinic, checked with a few other doctors about our next visit, and hit the road.  I've been very, very exhausted today.  So far we've gotten one "abnormal" test result back, but it's just a hormone imbalance.  I'll be on meds for that, but there's still other stuff that the doctors want to look into.  I'll be going back to the clinic on September 18th for a colonoscopy and upper endoscopy on the 19th and a few more appointments on the 20th.  We're also waiting on the rest of the test results (some will take about a month).

I'm going back to school tomorrow!  I'm only taking 13 credits this semester because of everything that's going on.  I'm excited!!!

Anyhow, I'm exhausted and I keep writing gibberish, deleting it, writing more gibberish, deleting that, etc... so, I'll leave you with a song that sums up how I'm feeling instead:

Cleveland Clinic - Day 7

Today was a rough one.  I had to start my colonoscopy prep at 6am, and I ended up puking it up (I always do...) so it took me forever to get enough of it down.  This one was supposedly pinapple flavored... it was DISGUSTING.  Anyways, after a not-so-fun morning, we headed back to the clinic for the colonoscopy and upper endoscopy.  The nurse somehow was able to get my IV in despite my already bruised and beat up arms from the past week (PRAISE GOD), so both of us were celebrating over that one, haha.  Then, things started to go bad.  They gave me the medicine that they use for the people who are getting their normal "50 year colonoscopy," which is known to knock them out but can be a little less "sedating" for young people.  Well, it did absolutely nothing to me!  They started the procedure with me wide awake, which was TERRIBLE.  I have a "tourtuous colon," which makes it a lot more difficult for the doctors because it's longer than normal and all twisty and turny... it also makes it a whole lot more painful.  Meanwhile, my blood pressure was dropping so they couldn't give me anymore meds.  After a couple of minutes it dropped way too much so they had to stop so that they could get it back up.  Now I have to go back next month to do it again (prep and all...), except this time I'll be in the hospital for it... and not awake!

I was a mess after that.  I'm definitely ready to go home.  I have one appointment tomorrow morning, then we're leaving!!!!

Cleveland Clinic - Day 6

Today was a little less crazy than the rest of our time here.  I only had one test... it was my ACTH stimulant test.  The guys at the lab recognized me from last time, and seeing familiar faces makes things a little easier.  I have my (THIRD!!) colonoscopy and upper endoscopy tomorrow afternoon, so I've been drinking juice and chicken broth all day for my meals.  I get to wake up bright and early to start the prep... I can't wait until that part is over!

Other than that, I went for a little swim at the clinic and I've been reading a lot.  We also felt the earth quake while we were in the parking garage!  We're still waiting for a whole bunch of test results, and some of them will take a few weeks.  This morning, I started getting really afraid that I shouldn't have come here.  I'm not a fan of waking up and realizing where I am and that I have to go have tests done each morning, and this morning seemed extra hard for some reason.  Thankfully, I've been reminded a lot lately that fear isn't from God.  His perfect love casts out fear, and He really is in control when everything seems like a crazy mess. 

 In my last post, I mentioned that we had gotten lost in the clinic.  Well, we've actually gotten lost several times and it's really funny.  Yesterday, we couldn't find building "F."  We could see it, but we couldn't figure out how to get from G to F!  We found a sign that told us to take the elevator to the second floor, but then the elevator didn't have a second floor so we went to the third and came back down a set of stairs to the second... which somehow brought us into what looked like a hallway with a bunch of operating rooms and things!  Every different specialty at the clinic has it's own area for doing procedures, which is where we somehow keep ending up.  Apparently only certain elevators take you to certain floors/wings.  The other day a lady had to lead us out of the heart failure ICU... we were trying to get to the outpatient testing to have my ultra sound done.  That place is crazy.  I think my parents and I are all sleep deprived and crazy from such a crazy week.  We laugh a lot as it is, but we've been laughing hysterically a whole lot that past few days, and I'm very thankful for that. =)

I'm not sure how long it'll take for me to recover enough tomorrow to post an update, but I will when I'm able to.



"The light shines in the darkness, and the darkness has not overcome it."
-John 1:5

Cleveland Clinic - Day 5

We still don't have any answers yet.  Today was exhausting, but having a weekend away from everything was nice.  We only went to the clinic once over the weekend, and that was just so I could pick up some stuff from the pharmacy and go for a swim at their fitness center.  We went to the Cleveland Zoo on Sunday!  It was very cool, and even worth having achy legs after. =P I'm a big fan of the kangaroos!

This morning, I had an ultra sound to check the blood flow to my intestines.  Hopefully we'll be getting the results to that soon.  We were going to come back to the hotel after that, but we decided to call about my appointment with the endocrinologist because we hadn't heard anything about it yet.  After a lot of phone calls and then getting lost in the clinic (we've been doing that a lot...), we finally ended up at the endocrinology center to try and schedule an appointment.  While I was sitting at the "make an appointment" desk, I noticed the sign that said "please schedule appointments 4-6 months in advance." Ha. Oops.  Anyways, the lady said she would try to see if anything was available for this week.  While we were waiting for her to call us back up, the Internal Medicine lady called and said that she made my endocrine appointment for Sept. 21st.... except while she was telling me that, the other lady was telling my dad that the doctor could see me right at that moment!  It was crazy, and I ended up having my endocrinology appointment today after all.  The endocrinologist decided that I should have a "cortisol stimulation test" tomorrow morning.  I'll have to go in bright and early, get blood drawn to check my cortisol level, get a shot of something that's supposed to make my body produce more cortisol, and then get blood drawn 2 more times within the hour to see if my body reacts how it's supposed to.  Thankfully, that is all I have tomorrow besides a few more blood tests.

A bunch of my blood tests have been coming back negative, but most of them are repeats anyways, so we're not surprised.  It still stresses me out though because it makes me worry that they're never going to find anything and that I'm doing the wrong thing.  It's a terrible feeling.  I need to constantly remind myself that God is control and He is way bigger than all of this!  I'm really glad that we're staying at a hotel that's about 25 minutes away from the clinic, otherwise I don't think I'd ever get a break from the feeling of being at the clinic. 

Hopefully I'll be coming home on Thursday!  I found out that I have to come back in a couple of weeks for some more appointments, but we'll get there when we get there.  Thanks again for all of the messages and prayers!  Please keep praying!!!!



The really cool tunnel...



Cleveland Clinic - Day 2

Today was another very long day.  We were at the clinic from 7:30am till 6pm.  First, I had my GI appointment, which turned out to be my most helpful appointment yet!  The doctor was very thoughtful, thorough and nice.  I really like how much time they spend with each patient here.  None of the doctors have seemed rushed at all!  Anyways, we talked for a long time and then she went out to get another GI doctor, who also talked to me for awhile.  They don't have any diagnosis yet because I still have a bunch of tests to have done, but it's very possible that there's a few different things going on, and irritable bowel syndrome might just be kicking my butt along with my "mystery illness" that is causing the fever/weight loss/fatigue/etc... but, the tests will check for everything else that they think is possible, so we'll see.

After that, I had an appointment with a spine doctor.  Why?  I have no idea.  It was just on my schedule, and he didn't seem to know why either.  It might be because at the time I faxed my symptoms to Cleveland, I was having a lot of neck pain/stiffness and back pain... but, once again, it was one of my many symptoms that came and went within a month or so.  That appointment wasn't very helpful, but we didn't expect it to be, so we weren't dissapointed.

After a much needed break out in the park on the campus, I came back in to prep for an abdominal CT scan.  My schedule said to check in at desk A 30, but when we got there it said it was the "Vascular Surgery" place!  The guy said I was in the right place, though... it was weird.  I sat in the IV room for a long time getting injected with something (probably contrast, but at that point I wasn't even paying attention...) and chugging good 'ol Barium Sulfate while watching the Sandlot... until it got to the part where the kids are on the ride at the fair and they all puke.  It almost made me puke up my Barium that I was trying to hard to keep down in the first place.  Thankfully, I found the "Contemporary Christian" station on the tv at my chair, and "Strong Enough" by Matthew West came on.  Seriously.  Every little encouraging thing that I hear/read while I'm hear makes a HUGE difference.  Then, I ate food!  That was my favorite part of the day.  The clinic has a bunch of gluten free and "allergy friendly" food in their dining area that we always buy at Wegmans!  Jackpot!  They also had plain baked sweet potatoes, so I was very happy with the food there today. 

The last thing that I had their today was my blood test.  My GI doc told me that even though there were quite a bit of things to be tested for, it should only be about 3 vials of blood.  Not true!  They took 25!!!!  The phlebotomist that I had was REALLY good though, and he was able to get my tricky vains on the 1st poke.  It took a really long time (and 2 veins) to get all of it, so we chatted for awhile.  I also got a free can of apple juice!

The days at the clinic have been super exhuasting and just really hard to get through sometimes, but they do a really good job providing things to get your mind off of medical stuff.  I've never been so thankful for random things like the crazy art and shops around the clinic.  They also have a place called the "Rooftop Pavilion," where you can eat outside on the top of one of the really big buildings.  We wandered up there yesterday (after accidentally ending up in the middle of the hospital instead).  We found out that we aren't going to be able to go home until next Thursday because I have to have another colonoscopy on Wednesday, so we'll definitely be taking advantage of all of the cool things that they have for us.  Here are some pictures from the past few days!

Part of our hotel room, and my awesome prayer quilt!

There are 50 tvs just in this "skyway!" And they're all showing the same exact thing!

The view from the Rooftop Pavillion

A really cool fountain.  It looks better in real life.

The rooftop pavillion is on top of this building.  It's only one of the many buildings!

I was really excited about the pager they gave me yesterday.

I was also really excited about the shuttle.

These signs are on every single staircase that we've seen at the clinic!  My dad actually thought there was free excercise equipment on the other side of the door and walked in...

The park where we rested for awhile, and the building where a couple of my doctors are.

I hope everyone has a great weekend!  We're looking forward for some time away from doctors and tests.  Thank you SO much for the prayers and to everyone who's been sending me text messages/facebook messages/anything... it means a lot, and it really helps me get through the days here (even when I'm not able to respond right away).  Please keep praying!!!

Cleveland Clinic - Day 1

1) We're back at our hotel after a long day at the clinic and then some dinner at a place that makes really good gluten/soy/dairy free food!  Today was exhausting in every way possible.  It's not fun at all trying to get diagnosed.  I see 2 more specialists tomorrow (GI and spine doc), and the doctors that I saw today requested that I see an endocrinologist and infectious disease specialist while we're here, too. We're waiting to find out when those appointments will be.

2) So far, we're not any closer to knowing what's going on, but we're saving all of my blood tests for tomorrow so that I don't have to have one after every single appointment.  I have a feeling that the endocrinologist will be the most helpful.

3) We're headed back bright and early tomorrow... please keep praying for us and for the doctors!  The clinic is REALLY cool and there's a lot of neat stuff there (and really nice people!!!), but I'm too tired to write about it right now.  I'll write more when I'm not as tired!

TWO DAYS!!!!!!

We're leaving for Cleveland Clinic on Wednesday!!!!!  Originally, I had an appointment next week too, but it was moved to Thursday, so we might be able to come back sooner then we thought!  That'd be cool, because I kind of need to do that whole moving into school thing as soon as I get back.  Of course, things can (and probably will) change when we get there.  We'll see.  I'm packing for cleveland clinic, cross country camp, and school all at once.  It's a little intense.  I had to go around to all of my doctors to get copies of all of my records and CDs of every single x-ray/ct scan/mri/ultra sound that I've had in the past 2 years.  That was also pretty intense.

A whole bunch of people have been praying for me at church, and I hardly even know most of them because I was new to the church a couple of months ago!  They even asked if I was going to be there long enough for them to send me mail!! 

I'm not sure if I'll be able to write another post before we leave or not, but I'll try to post updates while I'm there!  I'm also planning on using twitter so I can "tweet" things when I'm not around a computer, and they'll be on the right side of my blog.  So far, I'll be seeing an internist, rheumatologist, gastroenterologist, and neurologist.  Other doctors will be added if they think I need to see them.  I just have to wait and see what God is going to do with this, now!  Thank you SO much to everyone who's been praying for me!  Please keep praying while we're at Cleveland... they are GREATLY appreciated! :) Have a wonderful week!

... He's there, too.

Some days, this whole being sick thing is suprisingly easy.  Being "chronically ill" doesn't mean that I don't have those days where I feel like everything is great and wonderful, even if my body doesn't think so.  Those are the days that I don't just believe, but I know that this whole being sick thing is part of an awesome plan that is so much greater than anything I could even imagine.  A plan that is so great, that only our Creator could come up with anything like it.  Those are the days that I don't need to remind myself that things will be okay... because I know they will.

Other days are hard.  Really, really hard.  Those are the days when I forget that there's no need to freak out about everything that seems so helplessly out of control.  When I just desperately want be my old, healthy self and never feel a fever again.  Those are the days when I have to be reminded that no matter where I am, God, the One who created me, is still with me.  He's there when I try to go for a run and end up sick, discouraged, and depressed.  He's there when I've failed, and I don't feel like I'm good enough... and when it takes me way too long to remember that His grace is enough for me.  When I realize that some of the people who I love don't know Jesus and I start blaming myself... He's still there.  When I'm tired and can't sleep because I have to pee every 15 minutes, He's there with me.  When I'm writing a check to pay my next college loan payment and start worrying about whether it was a good idea or not to spend money that I don't have on a degree... yup, He's there, too.  He was there for every little piece of paper work that I've filled out before going to the doctors, and when I've had high hopes that this doctor might just be the one who'd figure out what's going on... and how to fix it.  When I feel like this " race" that I'm running has been one of those ridiculous "long, gradual inclines", He's there, too... running with me.

He's even there when I'm having having one of those really hard days and I start writing about how He's never left me, and everything starts to seem all great and wonderful again.