Wednesday, December 29, 2010

Life Undiagnosed.

The word "undiagnosed" has become my least favorite word in the world.  I've joined a forum of girls who are undiagnosed, and I've realized that all of us (even if we're experiencing completely different symptoms) have to fight the same mental battle everyday: whether we're sick, insane and not sick, or maybe even a little bit of both (because some doctors like to blame whatever mental state we're in for our symptoms).  Yeah, being sick really doesn't seem like it could be that complicated. I mean, you don't feel good, you have a temperature, you're mouth tastes like batteries (it really does... and if you made it through your childhood without licking a battery... well, that's just sad.), lots of things hurt... you're sick. You rest for a few days, you get better, and you go back to doing whatever you normally do. But... it's a completely different story when you've been sick for 2 and a half years (going from one random symptom to the next), the doctors have absolutely no idea what's going on, and it ends up effecting (or... defecting) your life in way too many ways.  I'm not trying to just complain about my own situation (although in all honesty, life is extremely hard right now), but while I was reading through the stuff that all of the other girls have written, it was as if I was reading my story over and over again. Yeah, we all have different problems, we all have different goals and things that we love to do (and a lot of times aren't able to do), but we're all faced with the horrible feeling of not having a clue of what's going on with our bodies... or our minds.

I think the hardest part is knowing what to take as advice from people and what to kindly thank a person for sharing and then try to completely get it out of my mind.  For example, some people have witnessed everything that's gone on for the past few years and tell me that I've either had a ridiculous series of bad events, or there's one thing going on that's causing everything... then they go on to reassure me that even if I were to get healthy right now, I'd need a break from school just to help my body and mind recover from everything that has happened. Then, I get the people who like to try and diagnose me. Sometimes it's very helpful, and I actually end up researching whatever it is they tell me about and I usually even ask the doctor about it. Sometimes it's not helpful at all. I also get a lot of "Maybe you're just really stressed out." That's when I have to explain that when I wasn't this sick, I LOVED school. I loved everything from being in the library with friends to do hw, to staying at practice for over 3 hours, to getting distracted by all of the wonderful people that I passed on my way to class. Yeah, sometimes school was stressful, but it was the normal "oh man, I've got 3 papers to write tonight" stressed out (which I actually miss). Life became a lot more stressful when I started getting too sick to do anything at school.

Today's my 76th day of having a low grade fever. You'd think that would be enough to reassure me that I really am sick, but a lot of times I call my dad in tears because someone will mention that my thermometer might be wrong. Then he has to remind me that we tested it on him and mom (several times), my coach, a few of my friends, and even the crazy PA lady, and... nobody else had a fever.  He also reminds me that I always tell him that I feel my fever going up, and then I check it and it really is up. It's not that I want to be sick, it's more that after everything I've been through, I want a diagnosis. I actually think that if I were to randomly get better, I'd be very frustrated that I never knew what was going on. I want to know what I'm fighting through and how we can treat it so that I can get better.  It's not like I'm stuck in bed every day, I actually make an effort to get out and go to the Y to work out and hang out with friends sometimes so that I don't go completely insane.  It's just that I like putting everything I have into whatever I'm doing... so I'm really not a fan of  whatever's going on, because everything I have right now is pretty much a terrible attention span, the energy of a 90 year old, and the feeling that I'm a really boring person.  I don't even feel like I can put everything I have into getting better, because it's hard to get better when I don't know what's wrong.  My parents are really good at reminding me that right now our goal is to find out what's wrong... then we work on getting better.  This is when I need to remember that I named my blog "One Lap at a Time" for a reason.  Taking a 10k one lap at a time is so much easier than this, but it still reminds me to persevere and be patient... as hard as that can be.

Sunday, December 26, 2010

"God Bless Us, Everyone!"

Christmas! It's my favorite time of the year, even when it involves trying to keep up with the craziness of the "Christmas rush" while fighting through the fever and fatigue that comes along with whatever I have.  I have a habit of making Christmas presents instead of doing the normal thing and buying presents, so I had a busy week leading up to Christmas... trying to get my brain (which feels like it's melting away) to focus on making a scrapbook and a binder full of stuff called "Mom's Guide to Being an Aerobic Animal." Yeah. My mom's birthday present (she's a Christmas Eve birthday girl) was getting her daughter (me) as a personal trainer, seeing as I'll be sticking around for another semester.  She really wants to be able to run a 5k (despite her back and hip problems), so we'll see what we can do! I have her starting with a lot of walking, core, and stretching, and then we'll go from there.

Anyhow, Christmas was wonderful.  My brother, sister-in-law, and I always sit at the top of the stairs while we wait for my dad to get the coffee ready (they had to wake me up this year! ah!).  Even though we're all in our twenties now, we still like to sit there impatiently as if we're little kids. Some things never change.  My family isn't into the whole clothes and money thing on Christmas, so we get a bunch of random stuff instead. I love it. I even got sugar plums this year! I never knew what they were before, but they don't have soy, dairy or gluten in them! We had a very yummy Christmas dinner (with a bunch of food that I could eat... sweet.) with my sister-in-law's parents. My temperature was up over 100 all day, so I was very dead, but it was still Christmas... even if I did fall asleep on the kitchen floor while my dad was being very nice and making me lunch. Now, my parents and I are sitting back and enjoying some peace and quiet before life goes back to "normal." Whatever that is.

My dad and I are heading out to the cardiologist tomorrow morning for my echo cardiogram. Yes, I am 20 years old and I can drive myself to doctors appointments, but when you're very sick and undiagnosed, it's always a good thing to have another person there who has witnessed everything that's been going on.  Other than that, I'm doing okay.  A new "symptom" has popped up... pain in all of my joints and muscles, especially in my hands and wrists. It's pretty annoying, but it'll help the doctors a lot because that was one of the main things they've been asking about.  I received my acceptance letter for swimming lessons! I figured I might as well learn how to swim while I have the chance, so I was very excited about that.  I also spent a couple more days in Rome with my coach's mom to help her with a Christmas party.  It's very cool to see what God can do when life is really weird and difficult, especially when we're celebrating the birth of our Savior!  I still have some very rough days, but I love Christmas, and my situation has made me especially aware of how many people don't get to have a Christmas like I did this year. Our family is very blessed to be able to be together and happy even though things have been pretty rough, and I wish everyone had that. 

 Yes, I may have been a "Tiny Tim" for Christmas this year, but I'd much rather be a Tiny Tim than a Scrooge!

Friday, December 17, 2010

Dr. House... with morals.

“Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened."
~Matthew 7:7-8

As you can probably tell from my previous post, we haven't had much luck with doctors.  I've been praying, and praying, and praying for a doctor that would work with me and be able to figure out what's going on, and our lack of progress has been very frustrating. My GI doctor is awesome, but now there's a lot going on that's out of his area.  However, I'm pretty sure that God has provided me with the doctor that I've been praying for!!!  I say "pretty sure" because I've only had one visit with him so far, but he seems awesome.  He really did remind me of a caring version of House.  I guess putting the words "caring" and "House" together don't make much sense, but my parents and I have been using a lot of House analogies.  I've always liked how House writes everything down on a whiteboard, ponders things all night long, and is never satisfied until he can diagnose the patient.  The doctor that I saw on Wednesday is in the same building as crazy "Ms. Happy Pills," except he's an actual doctor, not the PA (I've figured out that they are also a family practice, but the normal healthy people who just have a cold or the flu are the ones who see the PA. This guy works with the really sick people.).  I had printed off a huge list of all of my symptoms and tests that I've had done and gave it to the PA during my last visit, but she didn't really acknowledge it and shoved it in the folder with all of my records, so I thought it was long gone. But... when the doctor walked into the room on Wednesday, he had the sheet that I made AND he had already written all over the entire thing.  I was very excited as soon as I saw that. One of the first things he said was "There is something going on, we're not even close to getting to the bottom of it yet, and we still have a lot of tests that need to be done." That was music to my ears, especially after hearing "All of your tests are coming back negative, so you really need to stop having them done and just take these pills" the week before.  For the first part of the visit, he kept asking me "what's bothering you the most?" I would tell him about something, he'd right stuff down, look through my stuff, and then ask me the same question again.  We talked for awhile, and he was concerned about the flank pain that I've been having since last spring, but I told him that it wasn't very bad pain and that my primary doctors ignored it because my urine samples were "normal." Thankfully, I left him a sample too, so he went to the lab that they have to see if it was normal, and... he came back and said "There's blood in it. That's not normal." So, either we have a new thing going on or my other doctors have been missing it. Neither of those would surprise me.

Because of a combination of a few of my symptoms, he was concerned about my kidneys and bladder, so I had another ultra sound on Thursday morning. We're still waiting for those results. I also have to see a cardiologist on the 27th to have an Echo done because I have a ridiculous heart murmur.  Heart murmurs are pretty common (and a lot of times aren't serious), but at this point we can't risk skipping over anything, seeing as every organ in my body seems to not want to function properly... and besides, echos are actually really cool.  A picture of your heart shows up on a screen based on sound waves that the thing they rub on you picks up.  It also doesn't hurt at all, so I'm happy. Although, I'd be happier if all of these visits were free...

I feel much better (mentally) now that I have a doctor who knows that there is something going on and is very determined to figure it out. He's also extremely nice, and he's very good at listening.  Internists are specialized in dealing with adult diseases and multi system diseases, so they're very good at looking at the big picture and putting the pieces together.  I'm pumped. God is good, and He does answer prayers... in His timing. I'm still learning that my timing isn't the same as His, and sometimes that drives me nuts... it takes a TON of patience, especially during the very difficult parts of life.

I still have a fever and I'm not doing any better physically, but having a smart, caring doctor puts us a lot further along than we were. I was actually hoping to post something that wasn't related to doctors for once, but this is very exciting for us, so I couldn't help it!

Sunday, December 12, 2010

Ms. Happy Pills

Hola.  A LOT has happened since the last post.  I was actually able to get into an internist group last week, and I was REALLY excited about it because we had an appointment with a doctor who was supposed to be pretty awesome.  Unfortunately, I've learned that having an appointment with a doctor means that you might just end up seeing their PA instead. We're going to call this PA "Ms. Happy Pills." You'll understand...

First, the nurse came in and took my temperature with an oral thermometer... after I had been drinking nice cold water RIGHT in front of her, so it said it was 98.2.  So... I decided to check my temperature with my thermometer that goes in my ear while she was gone. 99.8. Buuutt... Ms. Happy Pills walked in right when I was doing that... yeah, we were off to a good start.  She told me that my thermometer was wrong and that I needed to return it. I told her that I drank cold water right before she stuck the thermometer under my tongue.  By then, we were at a point where she thought I hadn't actually had a fever at all this entire time, and that everything was mental.  She went on to offer me free anti-depressants and said that she was pretty sure she was right, but if she was wrong, all I would have to do is get off the meds. She apparently decided to skip right over the fact that if I wasn't actually chemically depressed, the meds that she was about to hand over to me could do REALLY bad things to me (especially because I'm only 20, and the size of a 12 year old...) and most likely cause other physical problems... which are the things we're trying to figure out and get rid of.  I told her that I understand that depression can do a lot of things to your body, but that the only reason I've been depressed is because I've been sick for over 2 years.  After a not so pleasant 30 minute chat, she said "take these pills, and everything will get better." I asked her why she would say that without referring me to counseling first if that's what she thought, and she said "oh, it's too late for counseling, you need the pills." If I had a recorded dialogue, you'd think there was some illegal drug action going on. It was nuts. I was about ready to go nuts, but then she decided that she was going to check my temperature with my thermometer in case I did it wrong (I didn't think it was that complicated...). Mine was 100.3 by that point. She was frustrated and decided she was going to check her own temperature to prove my thermometer wrong.  Before she checked it, she asked me if I knew where to stick it. I really wanted to say some type of wise remark about me thinking that it was supposed to go up my butt, but I didn't.  She checked it (without changing the already used disposable covering... AH!), and said "SEE! It's... oh, 98.4" That's when she told me that I could go and that I could come back next week to see the doctor.  That was a very shortened version of what happened, but it was horrible.

Mentally, it's been a little rough after that appointment.  My dad told me that she was being inappropriate and that I needed to completely erase it from my mind .  Unfortunately, my memory is one thing that still sort of works (sometimes), so I can't.  Oh, and just to make it clear: I have nothing against anti-depressants. They can help people out a lot. But, I do have something against a doctor seeing a sick, 20 year old girl that she had never met before, and jumping to the conclusion that it was all mental and that those pills would solve the problem... and then handing them out for free like they're candy.

I do have some good news! Yesterday, my family went out to Rochester for a Christmas party at my brother and sister-in-law's house. It was fun, and Christmas + family = a much happier me.  I also met with some people with Lyme Disease on Saturday morning to help start up a support group for people with Lyme Disease and other weird/undiagnosed chronic illnesses (I'm the weird/undiagnosed one). I'm pretty psyched.  This morning, I visited my friends church... and somehow ended up teaching Sunday School because the normal person couldn't.  It was very random. My friend and I did it together (she actually knew the kids, seeing as it's her church), and thankfully there were only 5 kids because the church is pretty small.  I randomly decided to read them the Christmas story from one of the children's Bibles in the room while they drew pictures of the story (and Marie attempted to control the one who wouldn't stop talking). The kids ranged from 6-11 years old, which made things a little difficult, but we survived.  We were just forced to learn that 11 year-olds don't want to do the same things that 6 years old do the hard way, which explains why we were begged to end the day by playing heads up seven up and 4 corners if they had to sit through me reading to them.  The weekend wiped me out and I accidentally fell asleep for 2 hours when I got home from church, but it was well worth it. :)

Wednesday, December 8, 2010

Doctor, doctor, give me the news!

Yesterday, we headed out to good 'ol North Chili for another doctor's appointment.  It was just an appointment with a primary doctor, so we were trying not to expect much, although we were really curious as to why they wanted us to come back there to discuss tests that they wouldn't discuss on the phone...

It started out on a depressing note... the doctor told me that the Infectious Disease specialists at Upstate won't take me because I don't technically have an infection that they know of. I thought the ID people were supposed to figure that one out for me, but apparently they like it when the hard part is done for them (the diagnosis). Okay, that wasn't very nice, but I'm frustrated! I was able to get some tests done while I was there, which was good... except for the fact that I'm getting tested for things like HIV now. NO, I did NOT have sex or inject myself with drugs... although I have been in places like the ER too many times and have been poked and pricked with too many needles to count, which makes it a possibility.  Hopefully not a very likely one, but now the doctors are using the handy dandy process of elimination, and that's something that needs to be eliminated so that we can move on.  They also tested a few enzyme levels and my thyroids.

Unfortunately, getting into the doctors involved walking through the cold, so when I got there my temperature was... 98.7 Go figure.  Thankfully, my dad persisted that they needed to take my temperature when I left to... and guess what, 45 minutes later, my temperature had gone up a degree to 99.7 (my healthy temp is about 97.8-98.2ish, my temperature now usually ranges from 99.1-100.5, and no, it doesn't do normal things like start low and go up throughout the day, it just goes all over the place).  The doctor said something along the lines of "Wow, that just went up a whole degree while you were just sitting there... that's not normal, I'm going to write that down." I was very thankful for him doing that (that's not sarcasm either!).

Another test that I have to have done now is the HIDA scan.  It's a test that lets the doctor see whether or not (and how much) your gallbladder is working.  Unfortunately, it involves getting injected with stuff that glows and then laying completely still for 1-4 hours (depending on how long it takes for the glowy stuff to get to my small intestine) under a camera. Fun...  although, I'd pick the HIDA scan over another colonoscopy (or anything that ends in "scopy") any day.  I'm also getting some morning cortisol test thingy done sometime soon. Apparently that's the first test that they do for Addison's Disease (a disease that causes your adrenal glands above your kidneys to fail, which causes your body to stop producing certain hormones and, of course, adrenaline. Basically, it means your body goes psycho whenever it is put under any stress.  I happen to have most of the symptoms of it... but I have most of the symptoms of a lot of things, so we try not to jump to conclusions).  My doctor admitted that he didn't know much about Addison's, though.

The past couple of days have been really hard.  Not knowing what's wrong with you can be very scary, and sometimes I still convince myself that I'm not sick and that I'm just stupid, because no one can figure it out.  I've been saying a lot of things along the lines of "I just want to be able to go to school" and "I just want to be a healthy college kid and be fun again." One very scary thing is that I was 89 pounds yesterday at the doctors.  I was 102 pounds this summer. This doctor didn't seem to think that losing 13% of my body weight was a big deal, which made my dad very frustrated.

The next step is to get into a group of internists in our area (so we don't have to travel as much). They'll be able to work with me and refer me to whoever they think I need to see.  The Cleveland and Mayo Clinics are always on our minds, especially with our lack of progress that we're making, but we have to take things one step at a time.

On the bright side of things, I was able to see the team again yesterday because RWC is right across from my doctors.  Aunt Jen and Uncle Andy had class though, so I didn't get to see Aunt Jen at all and I only got to see Uncle Andy for a couple of minutes. Basically, enough time to give him a run through of the doctors appointment.  I can't wait until our conversations don't consist of things like doctors appointments and my health.  I'm not saying that's not what I want to talk about now (talking about everything is actually very helpful), I just can't wait until this is over so we don't have any reason to talk about it! That will be a wonderful day.

Sunday, December 5, 2010

Where did all of my energy go?!

One of the main symptoms that I've been having throughout the past few months is extreme fatigue.  It's getting to the point where it's very debilitating some days, despite the fact that I get 9-10 hours of sleep a night (and sadly, still have to wake up with an alarm).  Every now and then, I'll let myself sleep in without an alarm, but then I end up sleeping forever.  I'm really not a fan of sleeping the day away.
Yesterday, my dad drove me out to Roberts so that I could go bowling with the cross country team.  At first I was pretty overwhelmed because I saw so many people that I've missed, and just seeing campus made me sad/stressed out/confused about everything.  Bowling was a ton of fun though, and I really enjoyed being with the team again.  I even tried doing the moonwalk in my bowling shoes (that were probably meant for 8 year olds).  My fever was over 100 (like normal), and I was very worn out by the time we were done bowling, but it was well worth it.  Oh, and my score of 24 was pretty epic. 

The depression has gotten better since I've been home because I've had a lot more time to pray, journal, read my Bible and just think and talk to people.  This doesn't mean that I don't get depressed about everything that's going on, it's just that it's the normal "being bummed about being sick all of the time" depressed.  This morning was pretty rough.  I woke up feeling miserable, so I wasn't able to go to church which made me really upset for awhile.  Thankfully, my dad was around and we talked for awhile. I was just so sick of not knowing what's going on, and I really didn't want to have to deal with it anymore.  Sometimes I get really frustrated because I want to be able to be my normal, crazy, bubbly self that I haven't been in a long, long time.  I spent most of the day on the couch... actually, I'm still on the couch.  I did get out to tutor for a little while this afternoon, but I only had enough energy to help for an hour and then I couldn't focus anymore.  Focusing has been REALLY difficult lately.  Just writing this is difficult... it's a good thing I'm not at school trying to write papers!

But yeah, that's the newest update of my life.  I'm extremely thankful for everything I do have, even if good health isn't one of them right now.  My parents have been moving the furniture around to try and find a place to fit the (FAKE!) Christmas tree, so that makes me very happy (not that it's fake... but that it's Christmas time!)! God has done many awesome things throughout the time that I've been sick, and I know that He's still there guiding and protecting me.  I even got an email from a little girl named Alena (who has been battling cancer and the terrible side effects of chemo and radiation) and her dad, and they sent me two prayers of healing that Alena says so that I could say them too.  I was so excited, and they are beautiful prayers that I'll be saying every night too.  I had signed her guestbook, but I didn't think they'd have the time to say anything back! I just wanted them to know that someone across the country was praying for them (I had stumbled across her page during the summer while looking for ways to help kids with cancer as a service project for the team...).

By the way, if you'd like to visit Alena's caringbridge website it's http://www.caringbridge.org/visit/alenamarek . Her family needs lots of prayers and support!

Friday, December 3, 2010

A new title! A new look! Sweet.

I've been wanting to change my title for a long time.  Honestly, the only reason that it was "This is the story of a girl..." before was because my Itunes was on shuffle when I was making it and the song "Story of a Girl" by 9 Days came on while I was trying to think of a title.  I know.  Real creative.

Yesterday we reached the milestone of... (drum roll please)... 50 days with a low grade fever.  My body is definitely feeling it... or at least it's feeling something.  Everything hurts, and it's really hard to concentrate.  The other day we were worried because I had been coughing up junk and having a lot of trouble breathing just like I was when I had pneumonia, but luckily this time we had the nebulizer handy and I could BREATHE.  Breathing is a wonderful thing. 

My dad was able to talk to the Infectious Disease Specialists at Upstate again, but they said that I have to go back to Rochester to get more tests done.... buuuut, they wouldn't say what tests. So, we called my doctors in Rochester, and they said the same thing... but they wouldn't say what tests I have to have done either, so now I have an appointment in Rochester on Tuesday for some mysterious tests.  At least we're making progress! Even if I'm clueless about it...

I could keep writing... but my parents and I have a Toy Story 3 date! =P