Medical update

So I got home today, and I was welcomed by a cardboard box on the table.  "Perishable" was written across the top, so I knew it had to be the b12 that the Lyme specialist prescribed last week.  I was excited, because it is supposed to give me more energy and help me sleep better.  I ripped open the package and was greeted with...

Yes, those are syringes!  NOT what I was expecting...you can imagine that my enthusiasm for the meds went down the drain immediately.  The thought of injecting myself...*shudder*.

Last night, I got really overwhelmed by all of my medical expenses - doctors visits and tons (i mean tons!) of supplements.  This is my pillbox:

Actually, this is my nighttime one...I have another one for the morning.  There are no less than 23 pills in that little compartment.  I used to be able to down them in one gulp (with lemon-flavored magnesium dissolved in water), but now there are so many I have to do it in 2 .  And now I get to inject myself twice a week?!  Awesommmmme.
Oh, and this is just the beginning - on Monday, I'm starting the 'real' meds.  Up to this point, I've just been taking a slew of supplements (to help boost my immune system) and some anti-seizure drugs (I know, random).  But on November 1st, I'm starting on a cycle of 4 antibiotics (so then I will have 27 pills to swallow...).
I have no idea what to expect.  Apparently, feeling sick (well, sicker than normal) will be a good sign, because that will show that my body is going through detox, and flushing the damn bugs out.  The doctor told me "we want you to feel sick, but not too sick.  Like, we don't want you to be bedridden, but you might not feel so great".  Hmmm...not sure how I feel about that.  But you know what?  If this helps in the long run, it will be totally worth it.
...I'm just glad God is control

starstruck...yep, it happened

Ok, so those of you who know me know that I’m a big dork when it comes to things like Harry Potter and LOTR (that’s lord of the rings for you-who-aren’t-as-cool-as-me).  What you might not know is that I also really enjoyed Transformers 1 and 2.  So, last week when Abby informed me that the 3rd one was being filmed in DC, I almost flipped. 

     There wasn’t even a question whether or not we would stalk Shia, and maybe even be extras? Ok, maybe not that last part, but we were hoping to at least see someone famous!  

     Wednesday night found Abby and I downtown being blinded by impossibly bright lights and surrounded by crowds of fans.  Police tape made it impossible to get closer than 100 feet to anything remotely interesting...I mean, whole blocks were cordoned off!  I was afraid we would never see anything, and since nothing was happening (as far as we could tell), I told Abby we should ask one of the police men if they could give us any inside information.  I walked up to a cop with an extraordinarily bad haircut (kind of like this this...just kidding!! THAT is an extraordinarily bad and creepy haircut i discovered this week...Hugh Jackman, you know better than that).  It was more like this, but a little poofier (and about 100X worse):

 Anyways, I walked up and said “excuse me...”.  He put his finger in my face as he spoke into his walkie talkie.  I stood there awkwardly while he finished his super important conversation, determined to see if I could get any information out of him.  A minute later, he turned to me and said, “can I help you with something before I take police action?”. 

 Are you serious?  Trying to keep a straight face, I told him I was sorry for interrupting, and asked if he would happen to know the best place to wait...for something, anything to happen.  He pointed to one of the several places where hoards of people were gathered and said, “yeah, right there”.  Thanks a bunch officer! ...couldn’t have done it without you.

After an hour passed, the only thing we had seen were jacked up police SUVs tearing down the street and then reversing...in order to shoot the scene again.  Fascinating.  Riggght. 

Looking on the bright side, if we strained our eyes really hard, we could just barely make out a few guys in black running across the road...about a football field away.  I'm pretty sure they were someone famous.  We finally got tired of waiting, and figured that we wouldn’t see anything more exciting anyways, so we left.  The next day, I found out that 15 minutes after we had peaced out, they had started filming explosions.  Gahhh!!  I mean, it would have been exciting to catch a glimpse of Shia, but let’s be honest...seeing fake explosions would have been even better. 


To give you an idea of how exciting our night was...

The only picture we took.  haha

Determined to try again and wait it out until we saw something, we started planning for our next adventure.

Hospital saga...number 1

Has it really been almost a month since I've done a new post??  I can't believe it.  There's been so much I want to write, but every time I get home, I am just so exhausted.  That's one thing that sucks about the Lyme thing...it zaps all my energy!  One good thing though...I have found some really great tv shows on netflix (and only feel mildly guilty for burning through them).

Disclaimer: If medical things make you uncomfortable and/or queasy, then you might want to skip this post.  You've been warned.

My life at GWUH - Part 1

George Washington University Hospital was beginning to feel like home.  Ok, not quite, but after  4 visits in 8 days...well, let’s just say all the nurses knew me.  The receptionist and I are bff (although for some reason he insisted on giving me identical instructions every single time), and the wristbands might as well become a permanent part of my wardrobe.  

     The fun started on Monday morning, when I woke to the pattering of rain and near freezing temperature.  lovely.  After alternately huddling under my umbrella and bussing, I made it to work by 8, an hour early.    Then, I got to sit at my desk and starve until my appointment at 11.  Yay!  

I decided to hail a cab since a) it was raining (I really didn’t need any other reason but... b) my bike tire was still very stolen (let’s be honest though, I wouldn’t have biked anyway) c) waiting for and transferring buses was too risky (no way I would arrive on time...they never come when they're supposed to!) and d) the metro would take forever...plus, the taxi would only cost 7 bucks.  Totally worth it.

Once I had signed in and showed my ID (I guess to prove i’m not a terrorist, although i’m not sure how my ridiculous jersey license would prove anything), I sat down in the radiology waiting room.  

I'm not sure why I'm showing you this, but yes, this was intentional.  The lady at the DMV was like, "you're gonna have this picture for 6 years...you sure you want it?"  Duh! Anyways -

I thought I had escaped the barium contrast ‘smoothie’, but I was not so lucky.  “Patient Rein!” I heard as a small, bald-headed man approached me.  I groaned inwardly (or was it audible?) as he held out a nalgene-sized amount (think iced venti starbucks cup - no ice) of white, viscous liquid.  I was supposed to drink that??  Let me tell you, being handed a starbucks straw and told to “enjoy yourself” did NOT improve the situation. 

Now doesn't that look tasty?

Trying to be positive, I took a sip of the ‘berry’ flavored crap.  How bad could it be?  After about 30 seconds, I thought I was going to puke.  My positive outlook had vanished, and I wasn’t even close to being done.

20 minutes later, I was that person, slurping the bottom of the cup through my straw.  “Ok Joyce”, I told myself, “just keep it down long enough for the CT!”...even though I really thought I was going to lose it all.  Thinking the worst was behind me (oh how young and naive I am!), I was given two hospital gowns and shown to another waiting room.  I changed quickly, one gown in front and one in back.  I was told to leave my shoes on, so the next minute found me shivering in the waiting room, wearing the gowns and my knee high boots.   I looked ridiculous!  PS...whoever thought of making patients wear paper-thin cotton gowns and then setting the thermostat to 45 should be shot.

     As I sat there waiting, surrounded by 60 year old women, I couldn’t help but think, “why am I here?? I’m only 24! This is SO unfair”.  But you know what?  Life isn’t fair.  At least I have the health insurance to pay for hospital tests.  I am thankful for that.

     After what seemed like forever, nurse Laura ushered me into another room to get my IV put in.  Needles don’t really bother me, but I’ve decided that closing my eyes when they first prick my vein makes it hurt a little less (I used to have this morbid desire to watch every thing as it happened.  Or maybe that's just curiosity?).  She taped the IV to my arm, and then led me down a hallway to another waiting area.  By this point, my courage was beginning to fail, and I wanted nothing more than to have someone there to hold my hand.  I thought I could handle going to the hospital alone, but it was just so lonely and I felt like crying.  As I sat there freezing in my ridiculous outfit and with an IV sticking out of my arm, I just wanted it to be over.      

     And it would be, soon, but not before one last little bit of torture.  The tech came to get me, and he was very nice.  He explained everything - the reason for drinking the barium, how the injected contrast (iodine) would make me feel, and that I also needed an enema.  EXCUSE ME?? Ain’t no doctor told me that!  He asked if I was ok with that, and I cracked a smile and said, “I guess I have to be...just get it over with”.  He laughed and said that everyone says, “If ida known I was gwon to have all this done to me, I wouldna come!”.  Exactly.  Thank you doctor for keeping me in the dark and lessening my dread...although if I ever have another CT, I'll EXACTLY what to expect.  

I kicked off my boots, laid on the table, and prepared for the worst.  The enema was over before I knew it, and the iodine injection felt exactly like he had warned me - an immediate heat all over my body, and feeling like I had wet myself (honestly, do they find things like that for the express reason of torturing us??).  The CT itself only took about 30 minutes, not bad at all (if you leave out the various methods of getting contrast into my body).  And then I got to go back to work...yay.  

Stay tuned for part two...

Is there an end in sight??

So yesterday I was on to doctor #14.  Oh wait, I think I forgot one...it was actually 15.

After a period of almost 6 years, countless tests, frustrating answers (or lack thereof) it seems that someone can finally make sense of my extremely confusing, ridiculously broad, and terribly frustrating symptoms.  I almost don't dare hope that this might be the beginning of the end of feeling sick constantly...but I have to have hope.  

Having no hope is an awful place to be.  I know, because I've definitely been there.  With each month of feeling sicker, with each food I crossed of the Joyce-friendly list, and with each doctor's lacking answer, my hope died a little.  It was incredibly hard to visit doctor after doctor, learning to expect no answers.   It was frustrating and disheartening to have to put up with answers like, "you just have IBS...there's not much you can do", "just chew on some licorice tablets and change your diet" or my personal favorite, "good news, the tests came back negative...there's nothing wrong with you!".  Doctors like that make me want to punch them in the face.  

Then there was the Tibetan doctor I flew up to NYC to see.  THAT was interesting.  I mean, really, how much can someone tell from swirling urine in a jar and feeling your wrist pulses? Yeah, we didn't work out.

And don't forget Dr. quack, who charged me thousands of dollars, filled my diet with supplements, and pumped me full of IVs.  i booted him.

I could go on about the string of gastroenterologists, radiologists, chiropractors, alternative doctors and other crazies, but I don't want to bore you.  All this is to say...

I've been through it.  

I've done my best to keep my head up and stay positive, but that hasn't always possible.  However, I can't even began to tell you how good it feels to know that I have an answer.   Maybe.  Antibiotic treatment isn't always effective and Lyme is very tricky to treat, but it's looking good.  God has been so faithful, and he's only taught me more of his faithfulness through these years.  My hope is growing...I am hesitant, but want to believe.  I know He has a plan, and I know it's a good one.  We'll just have to wait and see what it is!

I'll keep you posted :)

Lightning update!

- I signed up for Chinese classes!! I start monday.  Super excited because i have been dying to learn languages again.  I figured since I love music and chinese is tonal...why not?

- still loving my coworkers...they are so great.  We laugh all day long and sometimes don't get as much done as we should..

- See my bro quite often, and we went to a little hole in the wall place for dinner the other night called malaysian kopitiam :)

- I love the couple I'm living with! It's the most stress free/chill environment I've ever lived in.  So thankful!

- I am obessed with Indian food, especially chicken curry.  Now if only I can find an indian momma who will teach me authentic aloo gobi!!

- I am sitting in my favorite cafe...and drinking masala soy chai.  I think God created it just for me. Mmmmm.

- I saw 12th night for free last week at the shakespeare theater...one of the actors mooned me.

- I am biking absolutely EVERYWHERE.  It's the most freeing feeling in the world...i love not having to live my life by the bus (un)schedule anymore!  Here's a pic of my awesome bike...admit it, you're jealous.

- Biking to work is 3 miles, downhill.  it's beautiful in the mornings!! plus, i'm saving lots of $$ :)

This is my bike...I know you're jealous!

I heart them!

Last weekend my mom and Diana came to visit!  We packed a lot in, and by the end we were thoroughly exhausted!  Saturday my mom and jeremy went to breakfast, so I had a special morning with diana...I took her to Tryst for breakfast (best granola ever), and then we checked out the zoo.  they have such a fun assortment of animals!! I introduced her to the naked mole rats, and they were her favorite! haha.
Here are some pics!

Diana's ginormous hot chocolate.  she finished the whole thing :)

She 'illegally' picked the flower and then proceeded to hold it on her face by suction.  What a ham.

Dupont fountain.  typical/great place for photos!

I've had it!

Have I ever told you how many doctors I've been too?  Well, let's just say too many...about 10 in the past 5 years.  And you know what they have all told me?   Nothing.  You know how much they have helped me?  not a bit.  Every test has come back negative, every hope that I would begin to feel better has been squashed.  Maybe they think they're being funny when they say, "good news, your test came back negative!".  No.  Not funny, especially if you waste my time and money and then have no answers for me! I am sick of having blood drawn, samples taken, doctors throwing medicine at me...

And that brings us to today...where I had yet another wonderful experience to add to my arsenal.  I had asked around the office to try and find a good GP, but most of the responses I got were "oh, I haven't been to the doctor in like 6 years".  Wouldn't that be nice?!  One of my coworkers suggested a Dr. right around the corner, and I hoped rather than expected that I would like him.

I walked into the office...and it was shabby, badly painted, and out-of-date.  That's ok I told myself, you can't tell everything from the waiting room!.  The receptionist was really friendly, which, it ends up, is the only thing the place had going for it.

Several minutes later, I found myself being led down a corridor to a scale, having my blood pressure taken, and getting my temperature taken (my, this seems familiar...).  Another side note - I don't think anyone spoke English as their first language.  I'm just sayin.

So the doctor took me into the room, asked me a few perfunctory questions, made me feel awkward and stupid, and then said "the doctor will be in shortly".  Right, that must have been the nurse.  If shortly mean 20 minutes later, that's news to me.  The worst part about it is that it just gives me time to get nervous, feel like I will forget everything I need to tell him, and then get so frustrated by his lack of care/compassion/knowledge that I have a breakdown.  This is why I love going to the doctor.

Over the past few weeks, I had taken the time to write up an easy-to-read bare bones timeline of all my various symptoms during the past 6 years, including the fact that I have felt sick constantly for the last 2 1/2.  This was the first time I went to a doctor since I had completed it, and I was NOT impressed or encouraged when he glanced at the first page (of 3) and then handed it back to me.  How the heck are you going to diagnose me if you don't take my symptoms into consideration?!!

The good news is, he agreed to do a blood test for Lyme disease.  I have been researching it a ton in the past few weeks, and, for the first time, my symptoms actually seem to make some sense.  I have an appointment with a specialist, but it is a 3 month wait...so I figured a GP in the meantime might be helpful for a blood test or two.

Dr. what's his name (something like Rashim Khurram) got up and said "They will take blood.  After, I will come in and examine you".  By this point, I had been in the office for about 45 minutes.  I didn't love the doctor (not very personable), but he wasn't on my black list yet.

It takes what, like 2 minutes to draw blood?  I sat in that dim little room for THIRTY minutes waiting for someone to come stick me with a needle.  Finally, I was so agitated that I stuck my head out into the hall and asked a nurse to get someone to take my blood.  He said, "ok, no problem.  I take care of it right now".  Ten minutes later, the doctor sticks his head back in, "they've taken blood?".  NO.  I'M STILL WAITING.  Another 5 minutes, and that nurse comes in.  He acts like he can't remember what things he needs, as he stands there thinking and remembering what it is that he is looking for.  Heck no! I am not having some rookie with no skills take my blood!  I was so frustrated by this point that I didn't think twice before saying, "How long have you been doing this?".
"Oh, it's my first day" he said, smiling.  Whatever.  He kept joking about that for the next few minutes while I watched the blood that would most likely lead to another negative test drain out of my arm.  "Not bad for my first day, huh?  Please recommend me with your friends!".  I kind of wanted to smack him.  I'm not usually short tempered, but I just get so frustrated with the crap I have to put up with every single time I go to the doctor!
As he was leaving I said, "could you please get the doctor for me?  I have to get back to work".
"Sure, he is right out here" was his response...although I wasn't expecting much.

I sat there for probably 15 more minutes, all the while getting more and more worked up.  To say I was frustrated would be a massive understatement.  I sat on the examining table, trying to reason through the good of my staying for him to examine me.  Finally, when the tears started to well up, I decided I had had enough.  I grabbed my bag and stalked out of the office.  Man did it feel good.  I will never go back to that office again.
The end.