Saturday, January 29, 2011

Whatever my lot, you have taught me to say...

Josh Wilson "It Is Well" Instrumental



This week has been very rough... more mentally than physically.
I'm not doing any worse, physically... not any better, either.
I've been thinking way too much about the future.
When I'll be healthy enough to start taking classes again.
Where those classes will be taken...
and if/when I'll be healthy enough to run....
but most of all, just when I'll be diagnosed and healthy.
Why is everyone so caught up in knowing what they're going to with the rest of their life?
How come I have no idea what I want to do?
How come people like to ask "but what are you going to do with that major?"
What if I don't want to do one thing for my entire life?
Is it terrible to not finish college in 4 years? Or even (I know... it's crazy) take a break?
Does being sick even qualify as taking a break? It doesn't feel like one.

... did I screw everything up?

Nah. Not everything. Some things? Yup. Anything that God can't fix? Nope.

Things are really hard.  I don't know what I'm supposed to be doing most of the time.  I really don't know what my body's doing.  I don't know what's going to happen.  I freak out a lot.  Especially about being undiagnosed.  It's not a fun situation to be in.  I have a bad habit of always saying "Good" when someone asks me how I'm doing. I'm not doing "Good" (or even "well," to use proper English...).  I'm... surviving.  I have good "moments," where I'll be feeling good (both physically AND mentally), and I'll be very happy during those moments, but most of the time I'm either sick, very confused, or both. This is when I need to remember that Jesus said not to worry about tomorrow.  Now I understand why.
Thankfully, despite the fact that I have no idea what's going on with my life, I know where I'll be for eternity (that's a long, long time.)....
...and I sure hope there are swing sets. 



P.S. If you didn't click on the Josh Wilson "It is Well" link, you probably should.

Tuesday, January 25, 2011

Somedaayyyyy...

Today's been one of my "I'm too sick to do anything days," so I've spent it on the couch doing some sleeping and, of course, thinking way too much about things that I miss that go along with being healthy...

I miss being a college kid, constantly surrounded by friends.  Friends that I actually had enough energy to hang out with while I was at school, instead of spending any free time I had sleeping.
I miss running on rainy days and making sure to stomp in every puddle.
I especially miss running on those beautiful sunny days with white puffy clouds while trying to figure out what each cloud looked like.
I miss doing interval workouts on the track with Aunt Jen and Uncle Andy screaming at me, and the high fives from Uncle Andy that I'd get after a good workout. Or, sometimes, just the "Good. Go run some more." that I'd get before my ridiculous 45 minute cool down... which, I loved. I also miss waking up while it was still dark to get my morning run in before classes.
I really, really miss running with my running buddy, Rachel, and ALWAYS running side by side... me on the left, her on the right.  I also miss 115 minute runs before church... just myself and God.
I miss doing tempos on Sunny Side, negative splits, and "Getting Angry."
I miss doing "The Evolution of Dance" with Marie whenever I was home. I just miss dancing like crazy in general.
I miss planting apple seeds, pear seeds, and every other type of fruit seed in the empty space left by Mersereau, hoping for some trees to pop up someday.
I miss rollerblading, playing Frisbee and 30 mile bike rides.
I miss getting distracted in the library by calling the other study rooms, dancing, and Nerf guns.
I miss screaming with my roommate whenever we were frustrated, stressed out, or... just felt like screaming.
I miss Flash Mobs... especially surfing on a mattress in Garlock.
Most of all, I miss being my crazy, energetic, overly-excited, HEALTHY self... even if it involved having massive amounts of hw to do.

These days make me really depressed, because thinking of all of the things that I wish I could be doing really doesn't help me get through the days when I can't do any them.  I've been trying to focus more on swimming, trumpet and piano - three things that I've been spending my limited amount of energy on.  Today I just can't focus on anything... besides the things that I can't do.  I also just got a letter in the mail from my doctor.  They referred me off to a rhuematologist because they found the HLA-B27 Antigen in my blood (I had already found that out last week). It could explain a lot, it could be a completely different problem, or it could explain nothing at all (because 8% of the U.S. population has that antigen with no symptoms, supposedly).  Unfortunately, the appointment isn't until February 27th.  I'd really prefer not to go another month with a fever and not having any idea what's wrong with me. I'm hoping and praying that God will help my doctors diagnose me and heal me, and not only will I be able to be crazy, energetic, and overly-excited; but I'll also have a stronger faith, a deeper understanding of what other people are going through, and whatever else God wants me to have... because of all of this.  I just wish the "all of this" part was over with...

I've also been playing this song on repeat all afternoon...: http://www.youtube.com/watch?v=38GjkhunsbQ

Sunday, January 23, 2011

Pre-Race Anxiety: Medical Leave Style

Yesterday, my parents and I headed out to Hamilton College to watch a track meet and see some friends from school.  I literally had to mentally prepare myself more for this meet than for any meet that I've ran in.  Normally, I'm very excited/anxious before meets.  My "mental preparation" consists of daydreaming about how cool it is when you run so hard that you can't stand up after you finish, listening to the Rocky soundtracks (to accompany my daydreaming, which I'm very good at doing), and looking at my very specific warm up schedule made by Uncle Andy, which is specific down to the minute (with bathroom stops included).  I don't really think about the other runners that I'm competing against unless it's a race where the place that I come in actually matters... I just have a weird fascination with negative splits, "eating people up," and running myself into the ground.

This meet was very different.  Instead of daydreaming about racing, I was preparing myself for the depression that I knew it would cause.  It might sound weird that I forced myself to do something that would make things very difficult for me, but I knew that going to it would make me depressed for the rest of the day... not going (to the one indoor meet that I could go to), however, would make me feel bad for a very long time.  I wanted to see my friends.  I wanted to support them.  I just knew that being around a bunch of healthy people who would be doing all of the things that I love would be very hard... but, it'd be worth it in the long run.  My psychologist gave me some advice after listening to my reasons for wanting to go and not wanting to go: "Don't expect anything from other people while you're there, there's no way that they can grasp how you feel.  Instead, focus on what you're doing for them."  She didn't mean that people wouldn't show that they care (they did... and they did a very good job of it), but she knew that what I'm experiencing isn't something that is all that visible.  Yeah, I look tired, skinnier, and sometimes very pale... but nobody can see the pain, fever, and frustration/confusion from whatever undiagnosed chronic illness I have.

What "Psychologist Lady" said was actually very helpful... especially when Uncle Andy gave me the video camera to video tape the distance races for him.  I really like helping them out, and I think he knows that.  My psychologist has figured out that I like to help people by now too, which is why she said that.  While I was video taping, I was pretty happy... until I started feeling really crappy and had to go lay down (pole vault mats are another thing I love about track meets...).  I felt like I was helping them.  I liked that.  Yeah, I was a mess by the end of the meet, but it was worth it.  I'd much rather leave a meet sore, tired and with that satisfied "I just ran my butt off" feeling instead of watching people who I love go back to school... sore, tired, and ready to rest (or do hw...) on the bus.  I also think that I should start using my pre-race "mental preparation" for doctor appointments.  Maybe if I come in with grey sweats on (hood up, of course) and "Eye of the Tiger" coming out of my headphones... I'll be able to make it through them without getting so frustrated.

P.S. I'm ridiculously "feverish-feeling," tired, and unable to focus right now... so I apologize if whatever I just wrote makes absolutely no sense.  I felt somewhat okay when I wrote the first sentence... and well, I can't not finish something that I started.

Thursday, January 20, 2011

The Good Stuff.

My last post was about the terrible/very scary/depressing parts of being sick... but, I did promise a post about some very good things that have been going on once I was done venting.  I don't want to cover up the fact that this is a really, really hard time for me, but it's not like there's absolutely nothing good coming out of this.  Everyday is still a constant battle for me - both physically and mentally, but everyday is also a day of a whole bunch of opportunities for me... opportunities that wouldn't exist if I weren't on medical leave for the semester.  They're not crazy, life changing things... just "little things," that really aren't so little for me any more.

1. Music!
When I was in middle school, I wanted to be a professional french horn player.  When I was in high school, I wanted to be a music teacher.  When I went to college... my french horn was given back to the high school (which I had forgotten that it belonged to); my guitar was at school with me, but hardly ever used because of the combination of running and being a student that takes forever to get her hw done; and my trumpet was shoved under my bed because I was too scared to take it over to Cox to play it.  The keyboard had to stay home, unfortunately.  Whenever I came home for Christmas break, I'd play in the annual "Coffee House" with my middle school band director/HS Jazz Band director/Trumpet teacher, but that was the only time I ever seriously practiced my trumpet throughout the past few years.  Now that I'm home, I have plenty of time to play my trumpet, and I'm even playing in the Alumni Jazz Band in the Jazz Night thingy at my HS a week from Saturday.  I was supposed to play last year, but... I had a track meet. Of course.  Having a fever makes it hard to motivate myself to play a lot of the times, but I still really enjoy it.  I also asked for a self-teaching piano book for Christmas, because even though I could play... I never actually learned to play, so I didn't know anything about finger positions or chords... I just... played. Kind of.  I've been determined to plow through that book since Christmas so that I can get the next book in the series. Sometimes I feel way too sick and tired to play, but I can usually conjure up enough energy to get through a few more pages in my piano book and play some Jazz on my trumpet each day.  Music therapy is sweet.

2. Swimming!
In case you haven't witnessed me trying to swim before, I've always been a terrible swimmer.  I could doggy paddle and splash around... but that's about it.  One day, I randomly decided to sign up for swimming lessons at the Y. I was TERRIFIED the first day, but I ended up loving it. Yesterday was my third lesson, and now I can do the front crawl for three lengths of the pool! I'm thinking about going for 4 tomorrow... we'll see.  We even got to use flippers yesterday (which make you go really fast if you use them the right way!)! Swimming does make me tired, but I'm tired no matter what anyways, and we really don't think it's going to make anything worse.

3. Nala!
Nala is a rabbit that Aunt Jen and Uncle Andy
 (and Aunt Jen's mom) gave me.  We've had
 her for just over a week now, and we love her.  We don't have any other pets right now, so she gets all the attention. We let her out every night so that she can run around and play, and it's really amusing.  She's gotten comfortable enough to lay down and let us pet her, which is a big deal for Nala. She's currently sleeping in her litter box, which
 is apparently her favorite place to hang out.




4. Learning!
Having a fever for 99 days makes it VERY difficult to focus on anything, but, I do really like to learn, and not being at school gives me a chance to learn things that I want to learn, when I want to learn them.  I'm tutoring a friend in Chemistry, which I thought was extremely boring in high school, and now I love it.  I've had to re-teach myself a lot of the stuff, but I'm really enjoying it.  My dad also gave me a book called "Mind Hacks" for Christmas, and it's about a lot of crazy things that the brain does and it's really cool so far.  I haven't gotten very far in it though, because I've been reading "The Pilgrim's Progress," which is taking me FOREVER because my brain feels like it's melting.  I also have a whole collection of C.S. Lewis books waiting to be read... ohhh boy.  Most importantly, I've been able to learn a lot about myself... but I'll get into that in another post.

5. Relationships.
I left the most important one for last, so hopefully you made it all the way down here.  When I first came home for medical leave, I was terrified that I was going to lose all of my friends.  To me; leaving Roberts meant leaving them.  I mean, technically I did leave them, but I didn't lose them. Well, not all of them at least.  Yes, there are a ton of people that I haven't heard from sense I've left, but there are a few that have been staying in touch with me a lot, which means a TON to me.  Then, there are my coaches, who I guess aren't technically my coaches right now.  I thought I was going to lose them too.  That was a silly thought.  Instead, I've gotten to know Uncle Andy's family, Aunt Jen's mom gave me the rabbit that she was completely attached to, and I even made a surprise visit to Coach Kurtz' a while ago to give Tickle Me Elmo back.  Those are three very cool people, and they've helped me through a ton of stuff.  It's very cool to not be coached by them (and not even know the future of my running career) and still know that they care about me.     
       Being home has also made me focus on some relationships here that are hard to focus on when I'm at school.  I lived at school for the summer, so I really didn't see any of my extended family for a very long time.  Now, I get to see my Grandma more often (I went out to lunch with her and my aunt the other day!), and my Aunt and I even went to Yoga class together at the Y a couple of days ago.  One of my best friends also happened to be home last semester, so we've been able to hang out a ton (and vent, a lot.), and I've been able to see a lot of old friends from high school too.
     I think the relationship that has been changed the most is with my parents.  Being sick is hard, but I'm pretty sure that having a very sick daughter isn't any easier.  They've been awesome, and being home gives me a lot of time to talk to them.  This might sound pathetic, but my favorite time of day is when my dad gets home from work.  That's when we get to eat dinner together, talk about life, watch Psych and play with Nala.  We've also become pretty close to some of my high school teachers and coaches, so it's nice to be around them again. I'm really not a fan of the fact that I'm still sick... but I do like what's happening in the most important relationships in my life, especially with God.  I've never been so desperate for Him before, and even though I don't understand why He hasn't answered my ridiculous amount of prayers to be healthy yet, He's doing something, and this has given me PLENTY of opportunities to learn what it really means to trust Him and depend on Him.

I keep a journal, and lately when something really good happens (usually having to do with relationships), I'll add "that's more important than running a 16:50 5k."  When I was a freshman, Uncle Andy told me I had the potential to be running that by the time I was a junior or senior.  It was my goal.  Of course, I still think it'd be very cool to be able to do that (and I'm also a big fan of the preparation it would take. I'm weird like that.)... but, I'm also very open to the fact that God might have a different plan for me.  Or, maybe I just need to learn some lessons before I do anything like that. We'll see.

P.S. This just took me 2 hours to write... just to give you an idea of what it's like to try and write something that's legible when you've had a fever for 99 days.  I have to admit, I'm going to be a little mad if I end up not having a fever tomorrow after all of this. 100 sounds much more epic, and what's another day after 99 of them?

Sunday, January 16, 2011

The Hard Stuff.

Day 5 on antibiotics = day 95 with a low grade fever. It's kicking my butt. It's been one thing after another for the past 2 and a half years, and even though it's been a wide range of health problems, the worst thing has stayed the same: we have no idea what's going on, and it drives me nuts.  Yes, I miss school and running a lot... but that's not the worst part.  It wouldn't be so bad if I knew I wasn't supposed to be running.  When I talk to people about that, a lot of them will say something like "how could you want to run if you've had a fever for 95 days?!" Unfortunately, I've forgotten what it feels like to feel good, so I really don't know how sick I feel.  If we knew what was wrong with me and that I couldn't run because of it, I'd honestly be okay.  It'd suck for a little while, but there's a lot more to life than running and I wouldn't have a choice anyways.  I don't even think it's that I want to run (I usually do feel too crappy to run), I'm just very used to pushing through things. Not knowing if I'm supposed to run isn't the only thing that drives me nuts (Uncle Andy told me not to, so that made that 100x easier for me).  I also feel guilty about a lot of things because I don't know what I'm supposed to be doing. I feel guilty for not exercising, I feel guilty when I feel a little better and have fun with my friends, I feel guilty when I lay on the couch and watch Psych because I'm too tired to do anything else... yeah, the list just keeps going.  Once again, if I was diagnosed with something, I wouldn't feel so guilty.  My sickness would be more like a fact to me than just a bunch of weird symptoms that the doctors can't put together.  My parents and I were talking about the Mayo Clinic again this morning, because I've been very down about still being undiagnosed... especially considering that we were so excited about my new doctor. But... I brought up that I'd feel bad going there because they wouldn't think I'm sick enough.  I'm not critically ill right now, I'm chronically ill.  When you're critically ill, it's obvious and something needs to be done to take care of it.  When you're chronically ill and a medical mystery, well... according  to the doctors, you're not dying, your blood work is pretty normal, your organs look good, so... you can wait.

I've only been on the doxycycline for 5 days, so I've got 16 days left to see what happens.  I'm almost a little scared about randomly getting healthy if I never find out what was wrong.  I think it's mainly because I'm afraid that I won't be able to tell if I'm healthy... my parents say that it'd be obvious though.  My weight had dropped down to 87.5 pounds last week (14lbs down from my healthy weight) when I was at the doctors, and they said that I don't have enough fat on me to think straight (especially emotionally).  Instead of blaming it on the fever, I'm very good at blaming it on myself.  Then I think that I'm sick because I don't eat enough.... then my dad reminds me that I was sick before I lost weight.  It's just a very hard situation to be in, and there are so many things going on that it's hard to tell what's caused from what.

That post probably makes me sound like a mental nutcase, but those are some of the things that I keep fighting through each day, and they aren't fun things. At all.  I really just want to skip to the "being healthy" part, but I know that this is a time for a lot of growth in other areas, especially spiritually.  I'm also promising a more upbeat post for next time, because there are good things that I want to share too... I just had to vent first.

Random side note: This song has gotten me through a lot. You should probably listen to it.


Wednesday, January 12, 2011

Diagnosis: Undiagnosed

Sound repetitive? Tell me about it.  Today my dad and I headed out to the Internist's.  We were hopeful, because he's a very good doctor and we knew we were going to hear back on a bunch of tests that I had done a few weeks a go.  When we were on our way there, I was thinking "This might just be the day that I find out what I have..." I was also praying that God would finally give us a diagnosis, because we're about to go nuts without one.  My internist is probably the best doctor I've had so far. He lets me talk and he is very, very thorough.  After talking for awhile and doing a check up, he brought my dad into the room and sat down on his stool and paused just long enough for me to think "This is it... this is when I find out what's wrong with me." Then, he said "We have no idea what's wrong with you. All of your tests are coming back negative, but there's obviously something wrong."  I could tell he was frustrated, and my sobbing made it beyond obvious that I had had enough. What caught me by surprise was that he said I needed to start treatment.  How in the world do you treat something when you don't know what you're trying to treat?!

Basically, he's going to act as if one of the millions (okay, that's a slight exaggeration) of infections that I've been tested for came back as a false negative and put me on doxycycline for 3 weeks.  One of three things will happen: I'll get healthy and we'll never know what was wrong, I'll get healthy while I'm on the antibiotics and then I'll get sick again when I get off of them (which means I have some type of chronic bacterial infection... Lyme is an example of this), or nothing will change (which means it's not bacterial, and it's some other type of disease).  I had to agree in order for him to prescribe it, because he wasn't technically treating something.  Part of me didn't want to agree.  I was upset, and I thought it was a stupid idea.  I'm not quite sure why I thought it was a stupid idea, but I really wanted an answer.  I looked at my dad, who said "I think we need to do this" and seeing as he's my dad and dad's generally know a lot more about life than me, I agreed.

I was very upset after, but thankfully I had an appointment with the psychologist (who's helping me with the mental part of being chronically ill) right after my doctor appointment.  For the most part, it was pretty helpful.  She felt terrible that we didn't get any answers and she suggested that I should look into going to the Mayo Clinic. We've talked about it before, but in order to get in, you need to get referred by a doctor... and then they need to accept you.  She also talked about how I should try to make some sort of routine for myself since I can't be at school this semester.  She said that I should try to go to bed and wake up at the same time every day and keep myself busy doing stuff.  That's when I wanted to scream.  Healthy people don't always remember that a sick person has trouble with these types of things.  Sometimes all I can really do is sleep.  That kind of messes with having a routine.  I'm kind of living in slow motion right now.  When I feel good, I do stuff. When all I can do is sleep, I sleep.  I can't really plan that.

Right after that, I headed to my swimming lesson (yeah! I'm learning how to swim! I'll blog about that later...), which made me forget everything for a little while. THEN, I came home to... A BUNNY! My dad and I drove out to Aunt Jen and Uncle Andy's to pick her up yesterday. I'll blog more about that later to... because my brain is DEAD.

Saturday, January 8, 2011

Like a Lion.

"This is what the LORD says to me:
'As a lion growls,
a great lion over its prey—
and though a whole band of shepherds
is called together against it,
it is not frightened by their shouts
or disturbed by their clamor—
so the LORD Almighty will come down
to do battle on Mount Zion and on its heights.'"
~ Isaiah 31:4 

A few days ago, one of my friends told me about a radio station that she had been listening to a lot lately.  Apparently, it always used to be one of the "old people" christian, talk show type radio stations, but it's become a lot more, well... not just for old people, I guess? Anyways, I turned it on and some lady was talking about Aslan from the Chronicles of Narnia. When I went to bed that night, I turned on K Love and some guy was talking about how strong God is, and he brought up the comparison of a lion... again. Then, I fell asleep. The next morning I opened up the "Our Daily Bread" book that my coach's mom had given me, and the title of the devotions for the day was "Lion of Judah," and the scripture reading for the day was Isaiah 31:1-5 (verse 4 is up there ^ ).

Yeah, talk about a lot of lions, but I did  really need the reminder of God's strength. Not that I didn't think He was strong... but a good reminder of how strong is always nice.  A lot of times (especially when you're sick and struggling), people are always quick to remind you of how God is taking care of you and that He is holding you close.  That's awesome too, but when I think "gentle," "strong" isn't normally the first thing that comes to mind. The first part of Romans 16:20 says "The God of peace will shortly crush Satan under your feet."  "The God of peace" and the idea of crushing Satan all in the same sentence reminds me of how He's gentle and strong. It's kind of funny, because the verse says that Satan will be crushed under my (or... whoever's reading it...) feet, but I'm not the one doing the crushing! That's something that only God can do. A strong God... who can be fierce when He needs to be.

I'm not trying to say that God isn't gentle. After all, when God told Elijah to go up on the mountain because He was going to "pass by;" a very strong wind, an earthquake, and fire went by... and God wasn't in any of them. God spoke in the "gentle whisper." Yes, we do have a gentle, loving God. But we also have a God who's weakness is infinitely stronger than our strength. A God who's fighting for His children.


... and that's what happens when lions keep popping up in everything that I try to listen to or read...







Wednesday, January 5, 2011

Thank you, Ms. Elisabeth.

Yesterday I headed out to Barnes and Noble with one of my friends to spend a gift card that I had recieved for Christmas. To make a long story short; I spent 2 and a half hours trying to decide what book to buy, and then I ended up not being able to decide and I bought a collection of Switchfoot albums instead. BUT, while I was looking through one of the books that I was thinking of buying at one point, I found this quote:

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen."

                                                      ~ Elisabeth Kübler-Ross

I don't remember what the name of the book was, but I decided that it looked boring so I put it back. I also don't know who this Elizabeth lady is, but I like what she had to say. A lot.


Hey, 2011!

Growing up, our New Years Eves typically consisted of my parents, brother and me trying to stay up until midnight to watch the ball drop with some sparkly grape juice, and then hitting the sack.  We watched whatever New Years show was on TV, and, well... it wasn't terrible, but it wasn't terribly exciting either (although.... having the year change to 2000 was pretty sweet).

For the past 2 New Years, I've been with my coach's family and whoever ends up there to celebrate with us.  The first thing I realized last year was that they don't watch the ball drop! The funny thing is, I didn't realize until now that it doesn't even phase me anymore that I didn't watch the ball drop this year. I think we get more excited about calling one of our friends at midnight because her birthday is January 1st. Basically, our night consists of playing a bunch of games until 1 or 2 in the morning (which was VERY difficult for me this year, despite the extra strength Tylenol I was loaded up on...), but my favorite part is New Years morning at their house.  If any runners are there, they go run first thing in the morning. After that, we all eat breakfast together... and it's ALWAYS delicious.  Then the best part comes, which is when we all go into the other room and sing hymns while my coach's dad plays the piano.  We sang for an hour this year, and it was awesome.  My favorite hymn is "It is Well With my Soul," so I always pick that one... partly because it's a really cool hymn with an amazing story behind it, but also because I like it when the girls sing "it is weellll" and then the guys sing "IT IS WELLLLL" really low. We like to go all out.

I was pretty happy that 2010 was over, but instead of being a pessimist about 2010, I decided to look at the good things that happened, and I discovered that the really good things normally happened during a very bad time.  I decided that it's because the very bad times are what make relationships closer... not with everybody, but with the people who are willing to go out of there way to help you... and with God. That's when you're completely vulnerable and dependent on other people, and in my case, I've never felt like I needed God just to get through a day as much as I did this past year.  Leaving school was very scary, but I think I'm learning more about life now than college could teach me. I'll be going back when I'm healthy, and I reaaallly can't wait for that, but in the meantime I'm trying to focus on now, seeing as there's a lot going on that's outside of my control. I have a bunch of doctors appointments within the next week, so hopefully we'll be getting some more results!