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!

Information overload...

Helpful stuff to get you through this ridiculous post (after realizing that it's not normal to know all of these abbreviations):
ID = Infectious Disease specialists
HOA = Hematology/Oncology Associates
PCP = Primary Care Physician

On Tuesday morning, I had an appointment with my Internist (my PCP).  It was an extremely stressful appointment.  He has randomly decided that I should be at the Infectious Disease specialists at Upstate, not HOA (where I was on Monday).  The strange thing is that he's the one who referred me to my doctor at HOA, yet on Monday he didn't even want me go to back for the blood work or my follow up appointment next week.  We've decided to go to both appointments and not just cancel them, because if that happens to be the place that I need to be (seeing as I'm still undiagnosed), randomly leaving them after they've offered to help is a terrible way of going about things.  What's ridiculously frustrating is that we asked to get into the ID people 6 months ago and were "denied."  We also brought up Lyme to all of my doctors last fall, and ALL of them said it wasn't Lyme.  Within the last week, my GI, Hematologist, and Internist have all said that they think it's Lyme or another tick-borne illness.  However, none of them really seem to understand Chronic Lyme at all, and they wouldn't be the doctors who would make that diagnosis... which is where the ID people come in.

 The ID at Upstate wouldn't just look for Lyme Disease.  For all we know, it could be some infection I've never heard of, or some blood disorder I've never heard of (which is why we haven't ditched the hematologist quite yet)... and I guess I shouldn't forget about some virus that has yet to be discovered (the doctors like to remind me of that one, although I don't think I'd like being a guinea pig of a new virus).  We think it's Lyme Disease, but we're trying to be open to other ideas, too.  One of the best ways to see if it's Lyme is to see what happens after a few days of taking Antibiotics.  Normally, a person with Lyme Disease will get a Herxheimer reaction from the toxins being released into their blood stream while the Lyme bacteria is being killed off (in other words: you get worse before getting better).  I don't remember having a herx reaction, but I also haven't been on anything like IV antibiotics, shots, etc... and I've had good days and terrible days anyways, so who knows.

On a much more positive note... I was feeling better for the past couple of weeks. =)  Definitely not completely better, but better than I've been.  My temperature had only been going over 100 once or twice a week, and I wasn't in as much pain for awhile.  I've been feeling more tired/feverish the past couple of days though and my hands/joints/muscles have been hurting again.  We're pretty much waiting to see if I continue to have more good days, or if I start getting more sick again the longer that I'm off antibiotics (I've been on them pretty consistently for the past 6 months).  If I go back to how I was throughout the winter or if new symptoms pop up, we'd definitely be closing in on a diagnosis of some type of chronic infection... I think.

I was over at HOA today for blood tests (it was switched from Tuesday to today), and then I'll be back there next Thursday.  I wish every doctors office was like that place.  Besides the puzzles and coffee that I talked about in my last post, there's also checkers, free candy, a gift shop, and everyone is really nice.  It makes sense, because it's an entire cancer center (lab tests, treatment, doctors appointments and everything else are done in the same building)... it just makes other waiting rooms seem extra boring.  Other than that, we're waiting for a phone call from ID to see when I have to go there.

Whew.  That was intense... kind of like the past few days.

HOA Update

I'm pooped again, but I wanted to post an update about my appointment at HOA.  That place is crazy! In a good way.  Since it was my first time there, I had to see the patient advocate first.  She explained some things, and... gave me a free tote bag with some other random free stuff in it!  I was pretty excited about that.  I also have to wear a bracelet with my information on it whenever I'm there, and mine says "PATIENT NEEDS DIAGNOSES" on it.  Haha.  They couldn't have said it better!

After that meeting, we went upstairs to another waiting room where they had coffee and puzzles, and it was just very cool.  I couldn't help but look around and wonder what each person there was going through.  My appointment was with the doctor who happens to be the founder of the place.  Doctor appointments are so stressful when I'm meeting with a doctor for the first time.  We basically have to shove the past 2 or 3 years of my life into a 30 minute interview and try as hard as we can not to leave anything important out.  It's not fun at all, especially because we don't have any diagnose to work from, which puts a ton of pressure on us.  It's especially not fun when the conversation is focused on the types of cancer that I haven't been checked for yet.  Thankfully, the Oncologist doesn't think it's any type of cancer.  He thinks I need to go to the Infectious Disease specialists instead, and we made sure to tell him that I was denied by the ID people at Upstate last time.  I have to go back to HOA tomorrow to have some more blood work done... mainly simple things like a CBC and SED rate stuff.  Next week, I'll go back again for another appointment with that doctor, and depending on the results, we'll see if I need a CT scan to check for any hidden malignancies.  Based on my old CBC's, that doesn't seem likely... but we'll see.  I also have an appointment with the Internist tomorrow.

By the end of my appointment today, I was a mental wreck.  However, once I remembered that I was at the Oncologist, I realized that it's probably pretty normal for people to leave crying.  It's just that normally people leave crying because they have cancer... not because they don't know what they have.  I'm just very discouraged and stressed out, and by the end I was back to blaming myself for everything.  It's terrible.  I'm doing a little better now though, and it's time to get some sleep for another big day tomorrow...

P.S. This song makes me happy =)

Zoo!

I'm ridiculously exhuasted, so I don't feel like writing much... but I went to the zoo yesterday and I wanted to put up pictures!

It was my first time seeing the penguins, and I liked them so much...

... that I got a picture with a giant one.

We were having a staring contest...

... she won, and I was very thankful for the glass between us.

I'll try to write more after my appointment at HOA tomorrow!  Prayers would be greatly appreciated =)

When did feeling good become so hard?!

Yesterday, I did something crazy... and went for a 10 minute run.  Every now and then I check to see if I get sick or not when I run, and I hadn't tried in almost 2 months.  I survived the ten minutes, and I loved it!  I like to listen to my feet go "thump thump thump."  Seriously.  If I had a list of favorite noises, the sound of my feet when I'm running would be on it... along with airplanes and lawn mowers.  I'm very thankful for that run, and especially that I was smart enough to stop before my stomach exploded this time!

I had a few hours yesterday when I was pretty sure I almost felt like a normal, healthy, human being.  I try very hard to enjoy feeling like that, but I'm still always thinking about how confusing my body is.  Of course I want to be healthy, but my random healthy moments (whether it's a few hours, or even days of feeling better) make me think things like: "What if I'm all better, and I'll never know what was wrong with me?! What if all of these doctor appointments are just a waste of time?! What if I was NEVER sick?!"  It's very annoying, and then I get mad at myself for not enjoying feeling better.  The thing is, getting diagnosed has become more exhausting than the actual being sick part.  Yeah, being sick sucks, but it's the uncertainty of what's going on that drives me nuts.  Not knowing what's wrong with me leaves my brain able to come up with any and every possibility, even if it's completely unrealistic.  For example; the other day I thought I just didn't eat healthy enough because I didn't eat vegetables with my dinner.  One day without vegetables = a perfect excuse for me to not feel well, apparently.  Last night, I had a dream that we found out that peanuts were making me sick (it's probably because every time I eat anything with peanuts, my mouth tastes like metal for about a week... weird).  When I think of these things (which are usually completely ridiculous), I get very discouraged about going to any more doctors, because I literally believe that I'm making myself sick (or that I'm not sick) and that it's just a waste of time.  Going to the Oncologist isn't something that people do for fun, so obviously, when I start doubting that I need to go, I really don't want to go!  That's why I highly suggest counseling for anyone who's sick and undiagnosed.  Counseling helps me realize what thoughts are completely unrealistic.  It also reassures me that it's impossible to not have stupid, depressing thoughts when you're going through something like this, but it becomes unhealthy when you're "stuck" in those thoughts instead of just letting them "pass by like clouds" (as my counselor says...).  That's why keeping as busy as I can is very important.  I try very hard not to focus on being sick and to just do what I can do each day, but I definitely need distractions in order to do that... which is why I'm going to stop writing about being sick for now, and go swimming instead!

Lots of Updates!

Saturday was the last day of the musical.  It was great!  And exhausting, of course.  Unfortunately, the french horn wasn't mine (french horns are ridiculously expensive), so now that the show is over I don't have one to play anymore.  The retired middle school band director plays in a community band though, so I might start playing trumpet in that.  I have a lot going on now though, so we'll see.

I'm helping out with the high school track team now, since I'm back to having a lot of free time.  Yesterday was my first day of helping, and it was so cool!  Coach gave me half of the distance runners to time during a work out.  They had 3 x (3x300), with a minute rest between the 3 300s, and 5 minutes between each set of 3 300s.  Then the sprinting coach asked me to have a couple of his guys do the workout.  That was much harder than getting the distance runners through it.  They listened and did everything I told them to do, they had just never ran farther than a 400 (one of them only ran 100s...), so it seemed like death to them.  Seriously... they told me that they thought they were dying, and one was very good at dramatically collapsing after each 300.   I also got the "You have know idea how much this hurts."  Ha.  Haha.

Being out on the track was great.  I was dead after, and I realized that having a fever when it's 80 degrees out doesn't feel so great, but it made me really happy to be able to help my hs coach and the team.  I also get a whole lot of support from all of those people.  A lot of the coaches know what's going on, and they're trying to be as helpful as they can... and asking me to help them when I'm up to it is usually the best way to help me.

Yesterday I found out that my doctor referred me to a doctor at Hematology/Oncology Associates.  They're supposed to be really good and they work with people who have cancer, so in my opinion, that means they have to be nice people.  My appointment is on Monday, which is the quickest I've ever been able to get in to see a doctor that I've never seen before (normally it takes weeks).  God is good. =)

I also saw my GI doctor yesterday.  He is easily my favorite doctor, especially now that he's had me as a patient for awhile.  He's very frustrated that I'm still sick, but he can't do much about it himself because it's out of his area.  He did reassure me that I have a group of very good doctors putting their heads together to figure this out now.  He also always wants updates, even though it might have nothing to do with his area and he said someday he's going to read about me in the New England Journal of Medicine.  Haha.  He does think it's something systematic (affecting my whole body), and he even thinks my ridiculous amount of infections (sinus infections, infected wisdom teeth, pneumonia, etc) could have to do with it.  He even said: "This sounds exactly like Lyme Disease.  I wish that we had an accurate test to prove if it is or isn't Lyme."  Hearing a doctor say that is AWESOME (even if I don't have Lyme).  Most assume that the tests are 100% accurate.  It's a pain.

Today I get to see the oral surgeon to see if it's definitely my wisdom teeth that are causing problems before they go and pull them out.  I really can't complain if it is my wisdom teeth right now.  I'd much rather have them out now than get healthy and back to school and then have to get them out when things are finally going well.  We will see...

On the avenue I'm taking you to... 42nd Street!

Last night was the first show of "42nd Street" (the musical that I'm playing in the pit for).   It feels like senior year all over again!  There was even a balloon with with my name on it with the rest of the balloons (random fact: the ribbon from my balloon that I got 3 years ago is still tied to my old band locker)!  I was happy to see that everyone involved with the musical still skips around the school to "Come On Eileen," although I didn't join them this time.  It's just not the same when you're 6 years older than some of them...

We have three more shows to do, and I'm already pooped.  It's definitely not the same as being involved with it when I was in high school and surrounded by my friends, but it's still cool to be part of it... even if I'm still convinced that whoever wrote the music for it did NOT have french horns in mind.  My music has a range of 3 octaves, and we had to experiment to figure out the fingerings for a couple of the notes (like the ridiculously low D, that I normally just let the 2 trombones take care of... sshh!).  I really have enjoyed it though, and it's been a nice distraction from everything that's going on. =)

On the medical side of things... there's really no new updates.  My doctor knows which hematologist he wants me to see, so it's just a matter of waiting to find out when the appointment is.  I'll write more when I figure that stuff out... for now, it's time for another show!

Antibiotics x 7

Today I had an appointment with my dentist because of the jaw/neck pain that I've been having.  Of course, the first thing he said to me was: "It's gotta be Lyme Disease."  He's been aware of everything that's been going on, and he was really sick with Lyme for awhile.  He wasn't referring to my jaw pain when he said that, though.  He actually thinks that's because my wisdom teeth are infected and need to come out.  There's really no better time to get them out than while I'm on medical leave anyways!  I have to see the Oral Surgeon next Tuesday, and he'll be able to tell if it's definitely my wisdom teeth causing the pain or something else.  He gave me a prescription for antibiotics for now, because he thinks that my lymph nodes are swollen from the infection draining into them.  We had to tell my Internist that I'm going to be taking them though, because it'll be my 7th time on them in the last 5 months.  We're still waiting to hear from the doctors about my neurologist and hematologist appointments.

I've been very sick of doctors appointments and everything that's related to being sick, but hopefully the doctors will be able to figure things out soon.  Some days I think that maybe if I just acted healthy and tried to forget about everything, I'd randomly get better.  After being undiagnosed for so long, the co-pays, medicine, and tests that my parents pay for make me feel really bad.  Sometimes I get very scared that they're never going to figure it out.  Thankfully, I have wonderful friends and family who keep reminding me that God is still in control, even though things really don't make any sense right now.  I saw my coaches' family over the weekend, and that took my mind off of everything for awhile!  We met them at the mall, and we went on the carousel.  It was awesome.  I've also been very busy with the musical that I'm playing french horn in.  This week is "production week," so we have stuff going on every day.  I'm nervous, but it's so nice to be stressed out about playing french horn instead of everything else!