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.