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.

32 Years!

I feel like I should start this post by saying something along the lines of "Sorry I haven't posted in awhile, things have been crazy!" But... things haven't been crazy.  At all.  It's just been nice out, which makes it difficult for me to find the motivation to stare into the screen of my laptop for more than 5 minutes.  Until I discovered that our wireless reaches the porch.  Well, THAT changes everything.

The past week has been full of a whole lot of free time.  It's a weird feeling, because I know that in 13 days (yup, I'm counting down!), I won't have this much free time again.  I'm trying to enjoy it, but I'm so excited about Cleveland Clinic and school that I can't help wanting these weeks to go by as fast as they can!   

Anyways, what I really wanted to say was...

... today is my parents' 32nd wedding anniversary!  Not only have they been together for 32 years, but they've also stuck together while putting up with me for 21 years... that's impressive.

HAPPY ANNIVERSARY MOM AND DAD!!!!!!!!!!!!!!!!!!!!!!!

P.S. I'm currently getting my butt kicked by my fever, so if anything I said doesn't make sense... it's the fever's fault.