The last 6 months...

Here's a quick (kind of) list of what's been going on since I last posted in June or July or whenever:

• The medicine that the urologist gave me back in the summer helps a lot with the bladder pain and discomfort!  That means that the bladder issue is most likely Interstitial Cystitis, and it has nothing to do with anything else that's going on.  That's okay though, because we found something that can make it feel better, and I only have to take the meds when it's acting up, AND they don't have any side effects... besides making my pee blue, which is pretty cool.
• In August, I saw a neurologist for the first time.  They decided to try using the same treatment that they use for patients with fibromyalgia.  The medicine that is used by a lot of neurologists for that is Cymbalta, which is actually an antidepressant.  It helps with the pain and other neurological symptoms that the patients have.  I've been on a very low dose of it since, and physically, it has done nothing except make me constipated for 10 days straight.  However, the doctors think it might be helping me deal with the depression that being sick all of the time causes.  I'm not so sure.
• I went back to the neurologist in October, who decided it's definitely not fibromyalgia or anything like that, and the nurse practitioner decided I needed to go right to my oncologist.  We thought she meant in a week or so, but the next thing we knew we were getting sent right over to Hematology Oncology Associates, where I had been the year before.
• When my oncologist saw me for the first time in a year and a half, he was very concerned that I was still sick.  He had figured I had gotten better because he hadn't heard anything.  He ordered a PET scan, but insurance wouldn't cover it, so we had to do a chest x-ray first to "prove" that it wasn't enough to diagnose or rule out anything.  The doctor also had me record my temperature 3 times a day for three weeks.  I also had to take it whenever I felt like I had a fever.  It was SUPER stressful, because it made me think about my fever all of the time.  It turned out to be worth it though, because he was shocked at how often I get fevers over 100.  He liked my chart so much, that he took a copy of it just to use for insurance purposes.
• Then, my oncologist ordered a CT scan, because insurance still wouldn't cover a PET scan.  His main reasoning was to look for any giant lymph nodes, but he also just wanted to see everything in general.  That was on the Tuesday before Thanksgiving.
• On Thanksgiving (before we had the results from the CT scan), I woke up feeling really sick to my stomach.  But, well, I figured it was just my body being weird like always, so I still went to the Thanksgiving run that my team from high school does each year, just so I could say hi.  The pain was getting REALLY bad when I was there, so I booked it back home, where I exploded and passed out a few times (and hit my head/face on the side of the bathtub a few too many times)... and did that throughout the day.  At one point my mom said "Is it a cyst again?" and I said "No, my OB/GYN says I can't get those anymore!" Well...
• We got the CT results a few days later, which showed an ovarian cyst.  My OB/GYN had put me on birth control a few years ago to stop those, and then whenever I told him that I thought I was still getting them, he told me that I couldn't because of the birth control.  He has been kindly informed that he was wrong.
• The CT scan also showed a thyroid nodule.  Thyroid nodules can be anything from harmless cysts to malignant tumors.  The nurses at hematology/oncology are scheduling an ultra sound so that we can find out if it's fluid or solid, and then I'll be seeing my oncologist again that same day.
• My oncologist also sent me to an orthopedic to look at the dino egg on the back of my leg, because although it was originally diagnosed as a cyst by an orthopedic, it is clearly not a cyst.
• The nurse practitioner at the orthopedic place figured that we might as well stab it with a needle to see if any fluid comes out, because then it would be a cyst.  She did, and it was solid... and it HURT.  Then, I had an MRI of my leg.
• I went back today to go over the MRI results.  It didn't show any mass, so it's most likely a herniated muscle, BUT... it did show some abnormal colors or whatever MRIs show, but then they realized that she had stabbed me with a needle right before, so they don't know if that's what the abnormal "stuff" is from. So... I have to go back for another MRI sometime soon.
• The orthopedic is making me wear a brace on my wrist, because she thinks I have triangular fibrocartilage complex issues.  That has nothing to do with anything else.

I think that's it!  I also finished another semester, and I only have one more left until graduation!  Things have been really tough, because having a fever all of the time makes everything difficult.  It's so frustrating to feel like I'm not fully present all of the time, because a lot of the time I feel like I'm in a little fever daze or something. The fatigue is crazy, but God keeps giving me the strength that I need each day, and I'm still learning how to take one day at a time and not worry about the rest.  My family and I still need your prayers.  We're hoping for a diagnosis and HEALING very soon.  I will be posting much more frequently again for now. :) Thank you SO much to everyone who's been praying and encouraging me!!!!!!!!

Ch-ch-ch-chaaanges

I'm back!  I know it's been like 6 months or something crazy like that since my last post.  I needed a break, because I was feeling pretty discouraged and didn't even know what to think, let alone write for everyone else to see.

You've probably noticed that the blog looks completely different and even has a new title!  The title is from John 16:33, which has encouraged me a lot throughout the past few months.  It reminds me that challenges and trials are to be expected, but that because of Jesus' life, death, and resurrection,  we can rejoice in knowing that God can make even really, really hard/sad/bad/painful things work together for good.

Anyway, I'm working on a post with a whole bunch of updates, but if you can't wait until then, here are a few important things to know:

1) I'm still alive.
2) I'm still sick.
3) Jesus is still awesome.

Adios!

A day at the urologists...

Today was my big day at the urologists.  It really wasn't that exciting, but I was glad to finally be somewhere where they expected me to pee as soon as I walked in.  I'm generally really good at having to pee... all of the time.

Anyways, we just talked about my symptoms and ordered some tests to be done.  The doctor has a hunch that it could be Interstitial Cystitis (which is when the lining of the bladder is inflamed, therefor causing a whole lot of pain and discomfort).  Unfortunately, this would have nothing to do with the rest of my illness, and it's also not curable, but people find relief from different types of treatment.  Another unfortunate thing is that there is no definitive test for it, so we get to use the good 'ol process of elimination.  I did have blood in my urine (which isn't a typical symptom of IC), which makes things a little more confusing.  I have a bladder/kidney ultra sound next Monday to rule out some other things, and then I go back to the urologist in 2 weeks to talk some more, and hopefully figure out what's going on... at least with that part of my body.  Meanwhile, I have the pleasure (NOT) of deciding whether or not I should have a probe done to look inside my bladder, and if I would like to try some more meds.  I don't like it when doctors leave decisions like that up to me.  He prescribed me some medicine that will make my pee orange and syrupy (and hopefully make my bladder feel a little better).  Sounds fun...

I was pretty upset after the appointment, because my ideal solution to this problem would be that everything is related and we just need to figure it out and take care of it.  It's hard for me to be okay with the fact that it might be a lot more complicated then that, and I also tend to have a bad habit of thinking that my "plans" are the best way that God will work through this.  God's good at reminding me that I'm not in charge... and that's a good thing.  A really good thing.  God is bigger than urology appointments.

I have had a really rough past few weeks.  It has seemed like I've been getting worse, and I've been having a lot of really bad bone/muscle pain and fatigue, but... these past 2 or 3 days have been better, so I'm enjoying a little bit of relief. :) We're trying to figure out where to go from here, which is why we were kind of hoping the urology appointment would give us a little more direction.

On the bright side, I am really, really, reaaallly enjoying PT!  It has been a huge blessing for me, and being able to do something that I enjoy makes the not so enjoyable parts of this a whole lot easier.  I have a lot to say about it, so hopefully I'll get around to writing a post about it!

Still here!

Happy June!  It's been awhile, but I'm still alive.  The past few weeks have had a whole lot of ups and downs, but here's the latest medical scoop before I get into more fun things, like Jesus and radishes:

I received my blood work results from a few weeks ago.  Lyme is negative for the 8th time.  We're happy about that, because if I had 7 negative results and 1 positive, I'd be very confused.

They also tested for epstein barr (aka mono), not because they think I've had it this whole time, but because I've been exposed to some people with mono lately and I've also been more symptomatic lately, but that was negative, too.  That's also a "good" negative because having mono would just really complicate things at this point.

So, just two new negatives that we already had several negatives for.  Nothing to complain about there!

I see the urologist on the 12th, and that's a very good thing.  My bladder is wacko.

Anyways, that's enough medical stuff for now.  I've had a lot of hard days lately,  mainly because I've been getting really anxious about silly things.  I'm much better with the physical pain/discomfort than feeling like I'm going crazy. I tend to think that  I just need to work harder, pray more, or just, well... be better.  Whatever that means.  But, this verse keeps coming to my mind:

"But He said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.'  Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me."
- 2 Corinthians 12:9

The truth that I have to keep reminding myself is that I've got nothing to prove.  God has put me in this situation because He knows that it's the best way to use my life for His purposes.  God's still good.  Perfectly good.

... and His grace is sufficient for me.

Oh, and radishes.  My parents and I planted peas, radishes, 4 different types of tomatoes, beans, sunflowers and wildflowers during memorial day weekend, and we're going to plant a pumpkin patch when the weather gets warmer!  Here's what it looks like so far:

We have the peas and radishes in a raised bed, the sunflowers are next to the raised bed, the wildflowers are planted waaayy in the back of the garden, and most of it will be pumpkins!

The tomatoes are planted in the orange bags (one is missing, I know. It's still inside.)  The beans are in the blue bags!

And THIS, is what I saw when I went to go check on everything tonight... some little radishes popping out!

Doctors and dino eggs and everything else

Last week was a really tough one, but I'm still alive!  I was getting attacked by a stinkin' headache and nausea from Monday - Saturday, so it was a bit rough and I wasn't able to sleep very much.  I also had a doctor appointment on Wednesday.  We chatted, did some blood work, and he referred me to a urologist to try and get my bladder issues straightened out.  We're waiting for the results from the blood work.  He also checked out my mysterious lump (affectionately known to many as the "dino egg") on my right leg, because none of my doctors had come to a conclusion about it last year.  He almost had me get more scans done to check it out again, but he's pretty certain that it's a muscular deformity (which means we have 2 doctors agreeing on the same thing... which is pretty unique in my case), because it disappears when I relax my leg, and tumors don't do that.  It's also not growing and it doesn't hurt, so there's no sense in going in to remove it, and we know it's not fluid filled because it didn't show up on the MRI last year.  I've been exposed to quite a bit of radiation already, so doctors aren't just going to randomly send me to get scans done unless there is something that they really feel is worth looking at.  I'm trusting my doctor on this one.

I was feeling really down and discouraged for most of last week.  I guess it just seems like this has been lasting forever, and doctor appointments get me all anxious about the "what if's," and then, before ya know it, I'm an anxious and depressed mess. However, God has given me several reminders that he is STILL in control, and I'm trying really hard to just trust him and take one day at a time... but I could use a whole lot of prayers.  I honestly don't get how people go through these things without knowing Jesus.  I'd be hopeless.

I do have some exciting news!  I started volunteering at physical therapy, and I really enjoy it!  I was the happiest that I was all week when I came home from pt each time, so I know that it is a good thing for me to be spending some time doing this summer.  The people who work there are very encouraging people and they've given me more responsibilities than I expected, which I'm really happy about!  I thought that I wouldn't be doing very much with patients, but I get to work with them a lot and I love it!  Helping other people is a great way to get my mind off of my own problems, and I'm also learning a lot.

This week is off to a better start, and I'm choosing to keep my eyes fixed on Jesus, because he knows what he's doing!  Well, there are a lot more reasons than that to keep my eyes fixed on Jesus, but... you get the point...

Stay light, heart.

There's a lot about being sick that threatens to mess with my sanity and weigh my heart down. 

It's a lot more than just not feeling good and spending way more time than I'd like wrapped up in a blanket, asleep on the couch.  Being undiagnosed just complicates things even more.  It leaves me with a lot of "what if's."  What if they never figure this out? What if I have (fill in the blank)? What if I should've gone to a Lyme specialist after all?

But then, somehow, usually in some unique, weird, sometimes funny way... God reminds me to "chill."  He's got it all taken care of.  One of my goals during this is to stay light-hearted... which, I've learned, comes with trusting God.  I'm not nearly as good at that as I should be by now, but I'm really glad God's love isn't like human love.  I'm glad instead of turning away when I fail at trusting him, he just keeps giving me more reasons to trust him.  Sometimes it just takes a change in perspective to see it.

This weekend was a very busy weekend for me (probably not for a normal person who doesn't take a nap between each thing they do...), but it was full of good things.  I tried to take some pictures, and I'm glad I did because when I looked at them this afternoon, I realized how many people, things and experiences God gave me to smile and laugh about.  It's a good thing my family laughs a whole lot, because otherwise I might be insane by now.

On Saturday morning, my family and I  joined my highschool coaches at Jamesville Beach park to time the 5k for celiac disease.  My dad has really gotten into timing races, and I love when I get to join in on the fun and spend some time with people who I don't get to see while I'm at school.  It was also a perfect morning for the race... sunny with a high of 75. :) This is a picture of some of the equipment...

After spending a few hours of the race, I crashed and slept for a few hours at home... and then I woke up cranky, because I thought I should be running and that I was just lazy (that's the downside to helping at races...).  But, my mom and I went for a walk and she talked some sense to me... and you really can't be sad while walking in place like this.

When we were walking back to the house, I guy drove by in a lawn mower.  Most of our traffic consists of tractors and milk trucks, and the lawn mower just seemed like the funniest thing in the world at the time... by the time I took the picture, the lawn more was kind of far away...

This morning, my friend Marie and I took her lambs for a walk.  We might just be the only people in the universe who take lambs for walks down the road.  It's one of our favorite pastimes.

If I ever become so serious and my heart so hard that these things don't make me smile and chuckle, I give you permission to slap me.  And then tickle me so that I learn how to laugh again.  But... don't worry, I plan on continuing to laugh at lawn mowers and the idea of walking sheep down the road... even while I "walk through the valley of the shadow of death," 'cause I've got a God who's taking care of me, and I don't need to worry.

(and that same God created llamas, and they're funny)

A few things...

1) My brain feels like it's cooking because of this pesky fever.  Writing a list seemed much easier than trying to write comprehend-able paragraphs.

2) The past few days have been hard.  We're in between getting our previous plans (NIH) tossed out and trying to figure out a new plan.  I have an appointment next Wednesday with my primary care doctor, and then we'll go from there. 

3) Although the past few days have been hard, today's been a lot better.  A friend of mine sent me an encouraging message about some of the ways that God has worked through this to inspire other her... a few kind words go a loonnggg way!

4) I found out at the end of the semester about a really cool volunteering opportunity that I have!  It's actually kind of a cool story.  My mom's been going to pt for her hip, and whenever her physical therapist told her to do a certain stretch or exercise, I guess she said "my daughter told me to do that, too!" Eventually, he told her that I should come volunteer over the summer.  I contacted him after she told me, and I'm starting next Tuesday!  For now, I'm only going to go twice a week... but I'm really excited!

5) The Yankees are winning ;)

DONE! (And a reply from NIH)

I finished the semester on Thursday!  It's a big deal for me, because there were many times when I didn't think I was going to be able to make it through this one.  School by itself is enough.  School and a mysterious illness is pretty ridiculous.  But, God provided and took care of me in some pretty incredible ways... and left me wondering why I ever worry.  None of the things that I worried about happened, and even when bad, discouraging things happened, God was still right there, still in control.  I really can't explain how happy and thankful I was when I walked out of my last final!

We heard back from the National Institute of Health the same day that I came home.  They didn't accept me into their undiagnosed diseases program.  I was really bummed and anxious about it at first, despite the fact that I had walked out of my final a few hours earlier thinking about how silly worrying is.  I have an appointment with my primary care physician in a couple of weeks, so we'll go from there.  I'm thankful that I heard back the day I came home instead of waiting all summer to hear back.  Now, we can start heading in other directions.

My fever's making me feel really sick now, so I'll try to write more within the next few days!  And hopefully, my stuff will unpack itself... :)

p.s. IT'S SUMMER!!!!!!!!!!!

Merry Christmas! Oh wait...

I wanted to post this picture from Friday... it's not an amazing picture, but I took it with my phone while I was out on a little bike ride because the goats and cows were out, and that means spring is here.  It was 75 degrees and sunny (and that was 3 days ago!).

This picture, on the other hand, is what it looked like out my window this morning!  It was 35 degrees and snowing!  I think I was the only person on campus who was excited about it.  I might have eaten a candy cane and sang Christmas music today...

This week is our last week of classes before finals week!  I can count the days until I go home on my fingers now.  That makes me happy.  Besides that, I am hanging in there.  I can't sleep much because my bladder always feels uncomfortable.  Apparently, overactive bladder medicine isn't what it needed, because it doesn't feel any better and I've been on it for quite awhile.  We're going to take care of that issue when I get home.  Not sleeping enough doesn't make it any easier to deal with the fever and everything else, but I just need to make it through 10 more days!

Easter break.

I am home for Easter and I'm getting some much needed rest.  I've been too sick to do much besides sleep since I've been home, which has been really hard for me.  I'm trying to remember that getting through a year of school while being sick is a big deal, and that I need to rest during this break anyways so that I'll have enough energy to get through the last 4 weeks of school... yet I'm still good at starting to think that I'm just a boring, lazy bum.  Chronic illnesses are just so weird and long and sometimes boring... but, they are also a brilliant way for God to teach me things that I probably wouldn't have learned any other way.

I've heard it said that when people are sick for a very long time, they can start to grow bitter.  I've met bitter people, but I've also met some ridiculously awesome, joyful people who have been through enough to make even the happiest, optimistic person become bitter... yet they're still joyful.  Those are my favorite people, because it's obvious where they get their joy from.  Being sick has taught me that joy, peace and faith are so much more than feelings, and that if I ask God for them, God does something really cool.  He just dishes them out to me like it's what He's been waiting for me to ask Him for ages.  Sometimes I have to keep asking God for the fruits of the spirit throughout the day because each struggle that I go through every day can drain me of anything good if I let it... but, each struggle can also be used as a way for God to teach me more about Him and the person that He's molding me into, if I let it.

Don't get me wrong, I'm not a fan of being sick. The past few weeks have been especially hard because of how tired I am.  I can't explain how sick I am of this fever.  I think people forget that I have a fever sometimes, and that when you have a fever, well... it's not always easy to think straight, or to hold a conversation, or to just stay awake in general.  I just always enjoy time to think and reflect, because then I have time to see a tiny glimpse of what God's been up to.  And He's been up to a lot.
 
"That is what mortals misunderstand. They say of temporal suffering, 'no future bliss can make up for it,' not knowing that Heaven, once attained, will work backwards and turn even that agony into a glory."
-C.S. Lewis, The Great Divorce

(It took me a few days to get this posted, because I've only been able to write little bits at a time... so I didn't know it was going to be the day before Easter... so... Happy Easter!!!!  Christ has risen, and that's something to be joyful about!)

Update

Want to hear (read?) a funny story?

Last week, I called the NIH because I hadn't been notified that they had received my records, which my doctors had sent a few weeks ago.  After playing phone tag for awhile, I was finally able to contact them and talk to a real human being.  She told me that they actually don't send out a letter to notify people that they've received their records, but that if I didn't hear anything in 8 weeks, I should give them a call.  The first letter that they sent me said they did, so it was all very confusing.  Then, my parents called me the next day and said I had gotten a letter from the NIH saying that they had received my records.

I thought it was funny.  The not-so-funny part of the story is that the letter also said they didn't have everything from Cleveland Clinic that they'd like... and... the 6-10 week wait doesn't start until they have everything.  Sigh.

On a happier note, my 22nd birthday was last Tuesday, so my parents came out on the weekend again to celebrate a few days early with my brother, sister-in-law, and me!  It was really good to be able to get off of campus for a little bit and be with my family.  The past few weeks have been rough because school is really wiping me out.  My bladder is still really good at keeping me up at night.  I started the medicine for overactive bladder over 8 weeks ago, so I'm starting to think that's not the culprit... it's frustrating.  Each day is really hard, and sometimes I start to get discouraged because I start to feel "stuck" in this.  Then, I remember that I serve a God who has more than enough power and love to get anybody "unstuck" anytime He wants.  That's a really, really comforting thought for me when I start to get down.  There has never been a time when God didn't have all of this under control.  And you know how people always say that God won't give you anything that you're not strong enough to get through?  Yeah, I don't think that's true... otherwise we'd never need to ask God to give us strength.

"Do you not know?  Have you not heard?  The LORD is the everlasting God, the Creator of the ends of the earth.  He will not grow tired or weary, and his understanding no one can fathom.  He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

                                             -Isaiah 40:28-31

Farther Along

Sorry for the lack of posts.  The past few weeks have been rough... and crazy.  I've had some new symptoms pop up that I had to go to the doctor for last week.  It was a terrible, terrible doctor appointment, which I'm still waiting for test results from.  However, that same day, I found out that 3 of my friends and I were offered a room in "Beeson" for next year, which is more "apartment styled living" at Roberts.  I'm really excited to get out of the dorms.  4 years is enough for me!  I was also given an early birthday present that day!  Two of my friends gave me a "Psych" shirt (Psych is my favorite show... if you've never heard of it, you're missing out...).  So, a miserable day ended up not being completely miserable. :)

I was also going through one of me body's "let's lay in bed awake all night" phases for the past couple of weeks.  Fevers, not sleeping, and college are not a good combination.  I've been able to sleep better the past couple of nights though, so I hope that's how things will stay... at least for a little while!

My parents came to visit today, and we met my brother and sister-in-law for lunch and spent the whole day with them!  We went for a walk on the pier because it's abnormally warm out... it was a really, really good break from everything.

We're still waiting to hear from the National Institute of Health.  Waiting is hard, but I'm trying to take one day at a time and to be thankful for what God is doing each day.

This song has been encouraging me a lot lately!  Sorry if I've posted it before... I can't remember if I have or not!

The wait.

Earlier this week I found out that my doctors still hadn't sent my records to the Undiagnosed Diseases Program.  It wouldn't have been that frustrating... if I didn't think they sent it three weeks ago.  Thanks to the ridiculous amount of phone calls from both myself and my dad, they let us know that they had gotten it all together and sent it yesterday.  Now, I try to be patient until I hear from NIH that my records are there... then, I try to be even more patient while I wait 6-8 weeks to hear if I get in.

I've been listening to this song a lot, because it pretty much sums up how I feel.  Whenever I find out that I have to wait even longer, I don't think I'm going to make it that long... at least not without going insane. I was reminded the other day that if I ask God for patience, he'll give it to me... and maybe that's the point of all of this waiting... because it's when we think we can't take it anymore that He can blow us away by giving us everything we need to get through whatever we're going through.  I mean, I've made it this far... and I know I couldn't have done that by myself.

Fixing our eyes on Jesus...

This past week was our winter break, so I've been home resting.  It's been kind of a rough week though because I was trying to decide what to do this summer, which made me realize what things I can't do, which made me really upset that I was still sick.  I started getting all anxious because it made me realize how abnormal a sick person's life can be... and at that moment, I just wanted to be "normal."  Except I slowly started realizing that my definition of "normal" was just what I've learned from good 'ol America.  Not that I don't like America, but so much of the pressure comes from our culture... our culture of chasing after dreams, successful jobs, and finding that perfect someone... it doesn't really leave room for being sick now, does it?


After a few days of freaking out, God helped me to see why I was suddenly freaking out about life... and why I didn't feel peaceful about anything even though I kept asking Him to bring me peace.  I was looking in the wrong places.  I was searching for ways that I could "keep up" with the rest of the world... things that would make me feel more secure.  In other words, I was trying to fix things.


And then this came to mind...


 "...let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart." -Hebrews 12:1b-3


And once I finally remembered who I'm living for and what this life is about... along came that peace.

When ambition takes over...

I did a stupid thing today.  You see, sometimes I get frustrated that being sick is determining the things that I get to do.  Yesterday, I was trying to decide what to do over the summer.  Unfortunately, something like a full time job or internship is far from possible if I'm still sick, so I was trying to decide between taking an online class or trying to find a little part time job that I'd be able to handle.  After being frustrated all day yesterday about being too sick to live a "normal" life, I woke up this morning with the brilliant idea that being sick is stupid, so I should just suck it up.

... and you better believe I sucked it up.  I hopped on the treadmill (with a fever, of course), and after walking for 10 minutes I decided it'd be a good idea to start running... so I ran.  For 4 and a half minutes. That's when something inside of my abdomen decided to have a party, or explode, or something like that.  Being the stubborn "sick-o" that I am, I decided that the best thing to do would be to keep walking, because I wanted to go for 30 minutes (I normally walk for a half hour on the days that I don't swim).  By 28 minutes I was holding on to both sides of the treadmill, supporting myself while the treadmill was going a whole 2.5 mph.  I was a little bit of a mess for awhile after that, and my innards are still all achy.  I'm pretty sure "explosions" are my body's way of saying "YOU DOOFUS! WHAT MAKES YOU THINK I CAN HANDLE THIS RIGHT NOW?!?!" I call them "explosions" because there's always a moment that I'm pretty sure something inside of me is literally exploding because I don't understand how something could be that painful without exploding.  A few times it really was a cyst bursting, but who knows what happened today.  All I know that is that I learned a few lessons which people who manage to keep their common sense during illnesses probably already know... like that "sucking it up" doesn't make your illness go away, unfortunately, and when your idea of "sucking it up" involves running when you've had a fever for 496 days (I just did the math), your body is probably going to hate you.

Tomorrow, I will enjoy my nice, relaxing walk.

Either C.S. Lewis was crazy, or I'm more normal than I thought.

Sometimes I'm very content with this whole "being sick and not having a clue what's going on with my body" thing.  But then, those times of contentment are usually cut short by me freaking out that I really shouldn't be content because I'm suffering... and well... suffering is supposed to always be bad and miserable, right?  I never wrote about this, because writing about it made me realize that it didn't really make sense... I thought it was too silly to write about.  But I've been reading "A Grief Observed" by C.S. Lewis and I just stumbled upon this paragraph (it's about him dealing with the death of his wife, who is "H" in the book, and how he's starting to feel a little less miserable at one point...):

"Still, there's no denying that in some sense I 'feel better,' and with that comes at once a sort of shame, and a feeling that one is under a sort of obligation to cherish and foment and prolong one's unhappiness. I've read about that in books, but I never dreamed I should feel it myself. I am sure H. wouldn't approve of it. She'd tell me not to be a fool. So I'm pretty certain, would God."

Hmm.  I guess I'm not so strange after all (just a little foolish sometimes)...

The Good Stuff.

I've been trying to write an update for awhile, but the combination of having a crazy week (4 exams...) and my long time companion, the fever, has made it impossible to sit at the computer and write anything that's at least somewhat coherent. =p

The past few weeks have been hard, but things have been getting better this week.  Not physically, but I've learned that it's not always how I feel physically that determines how I'm "getting by."  My fever's still being the loyal companion that it is, and I've been experiencing a whole lot of weird bladder pain that keeps me up some nights (I honestly don't know if it's my bladder that hurts, but it sure feels like it when it does), but here are some of the blessings that God's given me that help me to stay sane and joyful (joy interspersed with random fits of tears, of course) during this...

1) Bible Study.  A few of us had been talking about starting a Bible Study last semester, and we finally did the first week of this semester.  It's just a few of my friends and me, and besides studying the Bible and getting to learn about God together, there's a whole lot of laughter involved.  Laughter = great therapy for sick people.   Fellowship = really awesome relationships.

2) Fax machines. My doctor called me on Thursday asking if I could stop by because in order for them to send my records to Maryland, I had to sign a release form.  That's a problem when you're 2 hours away from them with no form of transportation.  After searching around campus that afternoon, the secretary in the health center let me use her fax machine (I've never faxed anything to anyone before... it was a big deal...).  Now, my records should be well on their way to Maryland.

3) The people I live with/next to.  I have the most wonderful, encouraging roommate, and I live next to some great friends from the same town as me.  They are also part of our Bible study!  I'm also right next to my old roommate now (I moved last week), so I can still be friends with her and see her a lot.

4) The workers at our dining hall.  I've mentioned them before, but they're worth mentioning again.  Every morning, I get to chat with Mary, who is the lady who gives me my almond milk.  Everyone else still jokes around about how big buff me (that's a joke... in case you were wondering...) knocked over the cereal bar one morning.  Oh, and they always make sure I have something to eat!

5) The prayer chapel.  This has actually been literally 30 seconds away from me all year, but I've always been scared of it because it's in the basement... and basements are just... scary.  But, I've recently conquered my fear of it and now I use it every morning before I go to breakfast and class.  It's not so scary after all...

6) Professors.  There are some really awesome ones here.  This semester, I have 2 in particular who know what's going on and are a big help.  One of them is my biology professor, who always seems to be laughing at silly things that I say or making me laugh.... and 3 hour labs are a whole lot easier for me to get through when they include laughing.


I don't mean to make it sound like getting through each day is a piece of cake, because it's not... but I do know that gratefulness and joy seem to be connected.  I don't think it's possible to be filled with one without the other.  Also, when I take time to thank God for the tangible things He's given me, it becomes easier to be thankful for what He's doing through this illness... even though I don't understand it.

Quick update!

School + being sick = not much time to blog... but here is a very, very quick update:

I am no longer "normal people" sick on top of my not-so-normal "issues," so that's very nice!  I was home for the weekend to play in the alumni jazz band which was fun!  I also had a doctors appointment back home yesterday to make sure my PCP is on the same page so that he can send my records to Maryland.  We'll hear if I'm accepted into the Undiagnosed Diseases Program in 6-8 weeks.  I tried not to expect much at the doctors appointment because we were really just there to make sure he was sending my records, but it was still stressful.  I hadn't seem him since summer because I had been to so many other doctors since then!  The only thing new that happened was that he put me on medicine for overactive bladder because apparently it's not normal to pee every 10 minutes when I'm trying to go to sleep... and then wake up for more trips to the bathroom.  We won't know if overactive bladder is the culprit until we're able to see if the medicine helps, and that's supposed to take at least 2 weeks... so... we'll see.  It's really the least of my medical issues right now, but it could mean more sleep in the near future, and that'd be very cool.

I have a lot I want to write about, but I need to go to sleep!  Hopefully I'll be able to write more soon!

A rough week...

Last Tuesday, we finally heard back from Mayo Clinic... and... they didn't accept me as a patient.  They said they've gotten too many applications for the general medicine department, so they prioritize based on medical need.  Apparently being sick for 3 years just doesn't meet their standards....

Even though I had been praying that God would only bring me there if that's the place that would bring us a diagnosis and healing... I was still hoping that it would be the place, and getting that letter was so discouraging. The rest of the week was really rough after that.  I woke up on Wednesday with what I like to call a "normal people sickness," and it kept me up all night on Thursday, so I was a mess on Friday!  I somehow survived a class and a 3 hour lab, but it wasn't pretty!  By the time the week was over I was convinced that coming back to school while still being sick was a stupid decision and I just wanted to go home.  I still would love to go home and be able to rest, but I'm going to try and tough it out another semester unless things get worse.  I just have to be very smart about not over doing it.  I try to stick to a "no homework past 9:30pm" rule so that I have time to do something relaxing before I go to bed... otherwise I'm all anxious.  I also try to take breaks throughout the day to pray and rest, which help me to not go completely insane.

I'm still having a rough time because I've been feeling so sick and discouraged, but I know God is still in control... even though it feels like this has been dragging on forever.  I'm really hard on myself, and it doesn't help any.  Sometimes, I start getting mad at myself for stupid things like not doing a whole lot of fun things or having to rest more than everyone else.  One of my new favorite (not) fears is that I won't be able to adjust to being healthy because I've been sick for such a long time.  I know that sounds like one of the silliest things to be afraid of, but when I'm thinking like that it's hard to convince myself that it's really stupid.

The day after we heard back from Mayo, I registered for the National Institute of Health's Undiagnosed Diseases Program, and they already mailed an application back home.  We looked at the program last year, but they weren't taking any more applications then.  They only take 50-100 patients a year, but hey... it's worth a shot.  Please keep praying!

Who I am

I'm back at school for spring semester!  Thinking about getting through another semester while I'm sick is a bit intimidating, but I have to keep reminding myself to just get through one day at a time.  I really enjoyed break and having the chance to relax with my family!  Over break, I was thinking and praying a lot about remembering who I am in Christ.  It's really easy to start feeling down when I think of all of the things that I can't do.  Sometimes, it even feels like I lost part of my identity, and I start to be stupid and  think that because I can't run and do everything that I used to be able to do, I'm not as good as I was before.  Obviously, that's a lie (and a really stupid one), but unfortunately it's very easy to believe when I'm down about being sick!  It all comes down to having an eternal perspective and trusting that God really does know what's best, which isn't always all that easy... but it's so important.  I have to trust that this will be worth it in the end, and maybe God's doing bigger things through this than if I were still a healthy runner.

 I am a child of God because of what Jesus did on the cross for us, and nothing I do can make me any "more" of a child of God... and being sick can't make me any less of one!

Jason Gray - Remind Me Who I Am

A few changes

I've been messing around with a few things, so I'm sorry if things appear/disappear randomly in the next day or two (blogger has a lot of little surprises I didn't know about...).  So far I just added the share buttons, updated a few things, and changed the commenting settings so that anyone can comment.  If things look really weird all of a sudden, it's just because I don't know what I'm doing!

Happy Friday! :)