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 ;)!