Happy Memorial Day!

Life has been a lot busier lately, which is really good for the most part!  Of course, being busy involves accidentally falling asleep on my bedroom floor during the day and getting eleven hours of sleep at night in order for my body to keep up with everything.

Last week was the last week of the high school track season (we didn't have anyone make it to State Quals).  The girls' sectionals were on Thursday, which was the same day that we had a ridiculous amount of severe thunderstorm warnings and tornado watches.  We had to delay the meet three times due to storms, and then we finally had to call it a night at 9pm because it wouldn't stop storming.  We were able to get about a third of the track meet done in 5 hours (normally we'd be done with the entire meet by then).  We had to finish the rest of the girls meet during the boys meet on Friday, and of course we had to have a severe thunderstorm watch on that day too!  We were able to finish both meets (awards and everything) by 9pm and we barely beat the storm.  I had to do awards and run the results back and forth for both of the meets, so I was all over the place.  Being the first person to have a printed version of the results is scarier than you'd think.  The coaches like to see the results ASAP, so you pretty much have to either be really sneaky or just sprint back to the press box if you don't want to be attacked by a swarm of high-strung coaches. The team also had a meet on Monday, so we had 3 long, rainy, nights this week. 

 My fever seemed to be making a come back last weekend and earlier this week, so I was nervous that I wasn't going to be able to survive such a busy week, but I did!  My body is so weird.  The fever doesn't seem to have to do with the amount of activity that I do or anything.  It's just random.  It's the same way with my stomach, too.  I got really sick after running 20 minutes on Tuesday, and then I ran 40 minutes 2 days later (when it was REALLY hot) and was fine.  I really can't explain how confusing and stressful it is for me.  A lot of times people will tell me that I look good or seem to be doing better, but honestly, everything is still confusing, stressful, and sometimes very discouraging.  We really don't know what's going on, and we haven't made much improvement with the doctors.  When I'm feeling better, I tend to want to just give up with the doctors and assume that everything's better, and then I just get frustrated when I realize that I'm still sick.  Yes, there is a possibility that eventually things will just get better, but there's still the huge emotional tole of being sick... and even "getting better".  I've learned that transitioning from one to the other can be stressful no matter what. I really love having my two best friends back home because they seem to understand the whole "chronic illness" thing the best.  They know that it doesn't mean I'm always acting like a sick person, but that it does add a bunch of new challenges to my life that I didn't have before.  Most of the time, people who don't know me that well wouldn't be able to tell that anything is even wrong, which I'm learning to be very thankful for.  It just makes things interesting because I hear everything from "You look great!" to "You look really sick." on the same day.  I am definitely doing better than I was a few months ago, but there are still weird things going on.  The newest symptom is that I get rashes on my neck that come and go.

I hope everyone is having a great Memorial Day weekend!  Mine's been great so far!  I went to a picnic and hung out with some friends yesterday, and it was a lot of fun!  I was laughing so much and I couldn't stop, and it made me really happy... even though I lost at Croquet, Bocce Ball and Dutch Blitz.  We also ate really good food and sang hymns together, so that made up for losing at EVERYTHING. =P I'm going to make gluten/soy/dairy free s'mores tonight!  I'm so excited.  You have no idea.

Baaa!

The past few days have been really, really stressful.  I pretty much have no idea what's going with my life.  Thankfully, my two best friends are home from school now, which makes things 9483759x better.  My friend asked for a lamb for her birthday, and she really got a lamb!  Actually, they got 2 lambs to keep them from getting lonely.  We took them for a walk, but the lamb ended up walking me!  Yesterday was a good day!  I was exhausted after playing with lambs and taking pictures, but I didn't get sick to my stomach at ALL. =)

PJ and me.  That's not the proper way to hold a lamb!

Getting dragged by "Lilly!"

Christina, Me, and Marie =)

Update

Sorry it's been awhile, things have been pretty crazy.  I've been working on getting things figured out for the fall semester, which is SUPER stressful.  I really want to be back at Roberts, but it's getting more and more stressful as I get closer to the semester.  Unless things get worse, I'm pretty set on going back... it's just very possible that things are going to be a lot different than they were, and that makes me sad.  I'm just trusting that God will give me the strength that I need for the semester when that time comes... for now, I'm doing what I can to move things along without stressing out too much about things that I can't control.  I still freak out sometimes, but that's because I start trying to predict what it'll be like when I'm there.  I think the hardest times are when I realize that whatever I have might be around for a long time... or when I do the whole "I should've just sucked it up instead of ruining everything" thing.  I want to be able to bounce right back into my "healthy" life, but we have no idea what's going to happen.  I just don't want it to be a repeat of last fall.  That was miserable.  Anyhow, that's as much as I know about the fall, so I'm going to try not to worry about it and to focus on what's happening now!

I've been running 4 days a week the past few weeks (the other days are my swimming days)!  I'm trying very, very hard not to do anything stupid.  This is going to sound really weird, but in a way, we're trying to have me do more so that we can see what makes me... well... more "symptomatic."  Basically, the doctors want me more sick because they think it'll be easier to figure out.  That's really not a place you want to be in!  They aren't trying to make me sick, they just keep telling me that we might have to wait until whatever I have gets worse before they can figure it out (I don't like that plan. At all.) My "digestive issues" have been making a come back.  It's not cool.  My mom mentioned that it could be from running, but it doesn't make any sense if it is.  I just keep getting sick to my stomach every morning, like I was last fall.  It's not terrible... it's just really annoying and it means something's up.  My fever's been okay... it still randomly flares up each day though.

I'm really enjoying coaching!  I'm starting to know the girls a lot better, and I really like that there's only 5 of them because then I get to spend a lot of time helping each one.  I also don't think I know how to keep track of more than 5 during a work out yet, haha.  I felt like I did my own speed workout yesterday when I was trying to give them their 400 splits and get their 600 times while they were all finishing at different times.  It's crazy!

I need to get some sleep, but I'll try to post more this week.  Have a good rest of your weekend!

Worry doesn't add a single day.

This week has been tough.  The doctors called me on Thursday to have me come in for my MRIs.  It was frustrating, because I never knew when they were going to call so I didn't want to make too many plans for the week.  The MRI took about an hour because they did both at the same time.  It was boring.  They said that they'd have the results in an hour, but we never heard anything back on Thursday afternoon so I had to call them on Friday morning.  Then, they said I was supposed to have a follow up appointment, so they were going to call back to schedule that.  They ended up calling later and saying that everything was normal... which is good, but super annoying.  I was a mess last night because this means that the ID people and a trip to Cleveland Clinic are pretty much the only options left.  I've been so bummed out about it that I really just don't want to go to ANY of them... last night I told my parents that I just screwed everything up and I should just suck it up.  That's pretty much how things have been lately.  My dad reminded me that we didn't want anything to be wrong with my brain... I don't want MS, brain tumors, or anything like that.  As silly as it sounds, it's easy to forget that when you're desperately looking for a diagnosis.

I've been down in the dumps lately.  I feel like I can't handle anything else related to medical things.  I miss friends and having fun, and now that we're getting closer to the fall, I'm realizing how much I want to be on the cross country team again and I'm scared that I won't be able to.  I also decided that I wanted to volunteer at the children's hospital for the summer, but then I called and they said all the volunteer spots were taken.  Poop.  

But...  things will get better.  Hopefully very soon!  I'm trying very hard to keep trusting that God will give me the strength that I need each day and that He will make this into something amazing... it's just hard when I think I screwed everything up and that I should have just stayed at school.  But, even if I did screw up big time, he can make all things new... and that is very, very cool.

“But now, Lord, what do I look for? 
   My hope is in you."

-Psalm 39:7

Awesome Weekend!

On Thursday, I wrote that my MRIs were most likely going to be on Friday.  I should know better by now... HOA is still waiting to hear from the insurance people about the brain scan.  My cervical MRI (top of my spine...) has already been approved, but it wouldn't make any sense to have that done and then have to go back for the brain one (if it gets approved) a day or two later.

We had to talk to my PCP to find out why I haven't heard from Infectious Disease yet, and... they didn't accept me as a patient.  Again.  My hematologist/oncologist wants me to go there too though, so now he's working on getting me in.  He knows the head of the Pediatric ID group, so he's pretty confident on me getting in.  Cleveland Clinic is becoming more of a possibility because we can't keep switching doctors.  The MRI and the ID people are our last things that we're waiting for before we decide to move on to the clinic.  I'm a little doubtful of the ID people, but a lot of it is because of the stories that I've heard from people who have Lyme Disease... so that's a little biased.

On a much happier note, the weekend was great!  It was also exhausting, but it was well worth being exhausted. :)  On Saturday, my parents, high school coach, and I worked the annual "Making Tracks for Celiacs" race AND the gigantic track invitational at the high school.  This is our third year of helping at the Celiac festival thing.  This year, part of the course was under 4 feet of water from all of the storms, so my dad had to map out and measure a new course the day before the race!  It went pretty well considering how last minute everything was.  Once the race was over, we had to book it out of there so that we could eat and get to the track invite.  It was my first meet as "assistant distance coach (or whatever I am)!"  I imagined myself cheering and encouraging the kids the entire time... and I ended up working the high jump.  Haha.  It was fun, though!  I had plenty of bonding time with the official and I learned a whole lot about high jump.

Sunday was my college coach's surprise retirement party!  I've been trying SO hard not to post any blogs about how excited I was to be able to see everyone at the party, and now I finally can.  Phew.  It feels good. It was so cool.  We yelled surprise when he walked in (duh), and he seemed a little surprised, but then he started noticing that there were people there that he had coached a long time ago too, and then he was really surprised.  It was also very bittersweet... cross country isn't going to be the same without him, that's for sure.
The party made me all excited to go back and work with the high school runners because it made me realize how much of an effect coaches can have on people.  I already knew that they've all been a big deal in my life, but seeing all of the people there was so cool.  I'm really enjoying helping my hs coach now that I'm actually getting to know the runners.  Yesterday, he called my dad and asked to talk to me.  I was so afraid that I did something wrong, but instead, it was the most encouraging phone call I've had in a long time!  He told me that he wanted to make sure that I was considering coaching in my future!  I guess it's pretty obvious how much I love it then... even though I told the kids that I wanted to play the Rocky Theme on the loud speakers during their workout, and NONE of them knew what I was talking about.  That's so sad.  We have our first dual meet tomorrow (a bunch were cancelled and rescheduled for later in the season), and I get to ride a school bus!  I'm so pumped... and I also really need to go to bed.

More HOA fun... and some ice cream.

Today I headed back to HOA to go over blood test results.  I'm starting to really like that place!  I sat down at one of the tables that had a puzzle on it and worked on that while I was waiting... and waiting takes a long time there (over an hour today!).  I also really like my doctor and all of the other people there (and the free candy).  Seeing as these tests were all repeats of tests that I've already had done, we knew they'd be normal... and they were.  That almost rules out everything hematology/oncology related, but not quite.  He talked about how some mild lymphomas are similar to what ever I have and are very hard to diagnose. A full body CT scan would check for that.  He doesn't think it's very likely though, and his advice was to wait and see if anything gets worse or if I go too much longer without a diagnosis before I get that much radiation (I've already had a CT scan of my abdomen, and CT scans aren't something you want to get all of the time).  This does NOT mean that we think I have lymphoma... if we did, we wouldn't be waiting to have my scans done.  It's just a possibility.  A small one. 

I expected to leave the appointment without any new plans or anything because it was a "lab report" appointment, but because of some new symptoms that've popped up, he decided that I need to have a cervical (the top of my spine) MRI.  Then, he decided that we should look at my brain too while I'm at it, so I'll also be having an MRI of that.  The MRIs will most likely be tomorrow, but I will post updates when I can.

Other than that, there's not too much else that's new.  I'm just having a lot of muscle/bone pain, muscle twitches and neck issues.  I'm really enjoying helping out with the track team!  They did 10x300s yesterday, and I had 4 of the girls and 2 of the boys.  The hardest part for me is trying to figure out just how fast these kids are.  I've only been working with them for 2 weeks, so I don't know what they're capable of doing.  So... after they did 9 of them, I gave them specific times to hit that were MUCH faster than what they were running and told them I would buy them ice cream if they hit that time... and now I owe ALL of them ice cream.  I knew they had more in them!  Of course, they weren't supposed to run every 300 all out... but still... one of the girls ran 22 seconds faster (this is after running 9 300s!)!  Now, her and I both know that she's a whole lot faster than we thought.  They were also super excited after that, and I'm pretty sure their excitement is worth having to buy 6 ice creams. =)

I'm still a dreamer...

I've been listening to "The Redeemer" by Sanctus Real a lot lately.  It's my new favorite song, and it makes me feel better about this yucky, no fun, scary situation.  Last week was so hard, and I really don't want to have any more weeks like that.  Getting bounced around from doctor to doctor and not getting any answers gets so hard. I've also been worrying a lot about next fall, because I really want to be back at school.  However, I have to remember that thinking about the fall doesn't help me at all right now, and I just need to keep trusting God.  He will give me the strength to get through whatever will come... when it comes.  For now, I really just need to do whatever helps me stay happy... and whatever can help me keep my sanity.  That'd be nice.  I've been going for little runs a few times a week.  I can only do up to 10-15 minutes before I get the abdominal pain and feel really weak, but I LOVE those 10-15 minutes.  I like being outside, so any excuse to frolic around on the trails across the street and see flowers and leaves starting to grow makes me very happy.   I also love helping the track team.  I've only been helping on the days when they have speed workouts, but their meets start this week, so I'll be going to those too (as long as I feel up to it).

Two of my best friends were home for Easter, so we hung out on Friday.  It's so nice to hang out with friends that are my age... thankfully they'll be back home in a few weeks for summer!  One of them convinced me to get a twitter... I'm not sure how I feel about Twitter yet.  I think it's kind of weird, but I put it on the side of my blog just in case I have anything interesting to say... haha.  I wasn't feeling well at all on Friday night, but I was still really happy... and trust me, not feeling well is so much easier to get through when you're happy!  I just felt really weak and tired (I knew it was coming, because I was very achy earlier in the week).  I also helped my coach's mom last week at the Easter egg hunt at her library.  It was a nice break from everything! 

Easter was great... I love Easter.  Seriously.  We get to celebrate that Jesus rose from the dead! Talk about the happiest day EVER.  Of course, there were still moments when I got frustrated about everything... but it's still Easter.

Our family always does Easter Baskets... they're fun!

We found flowers while we were out for a walk on Saturday...  I think winter might finally be over!