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...