Thunder Road - Bruce Springsteen

Notes from the POTS specialist appt today -

• Most recent thyroid test - Normal.
• Low blood pressure?! Agh, the one symptom I didn't have! BP machine beeping at me like crazy. 78/54.
• Sat around the office. I really ought to make a comic strip featuring the med students. They have absolutely no idea what they're doing. It's almost cute. Lesson One: Knock before entering an exam room. It's the least you could do.
  
• Took a Midodrine sample. One hour later, BP 110/50; HR 59.
• Keeping bb's at the higher dose for now.
• Got an Rx for Midodrine (ProAmitine).
• Going to get an electronic blood pressure cuff and take my info 3-4x/day. Joy.
• Fax results in one week; visit again in one month.

Long day. Focusing on the Midodrine this week.

rest,
et

Hey Ya - Outkast

What a bummer today. Very little energy, nauseous, etc. Tomorrow, back to the POTS Specialist downtown. Show me the Midodrine!

"What's cooler than being cool? Ice Cold!"

acoustic rock/funk/urban/alternative hip hop,
emma

Hey Jealousy - Gin Blossoms

Thank God for milder weather! Half hour in the sun, chicka yeah! That's right, freckles. Bring. It. ON.

The last few hours have been rough; very tired + palpitations. But this past week on the higher dosage has certainly been above average. Plus my eyes are looking brighter and clearer. Yay! :)

strawberries,
emma

Hey Juliet - LMNT

Long day yesterday with the wedding and everything...but I stuck it out! Only 20 minutes lying down? That's awesome for me! :) Go Beta blockers! Go dosage changes! My heart's pretty tired right now, but overall it's looking up?

I'm frustrated the doc is making us come downtown (again?!) just to get a 'scrip for Midodrine, but we're at the mercy of her office. At least Mom was able to negotiate an afternoon appointment.

whiffleball and bug spray,
acoustic Beach Boys in a church,
nice. nice.

emma

Hey Leonardo - Blessid Union of Souls

Yesterday I had a little more energy. Yoga!
Nighttime: foggy thinking and some difficulty breathing.

Resting up for a wedding! :) Gorgeous weather!

love and fancy clothes,
et

New Shoes - Paolo Nutini

Trying to read up. Acupuncture, aquatic therapy, cardiac rehab, on and on. I've gotten some good feedback concerning Midodrine - the next POTS drug on our list. At this point, really, whatever it takes! Thanks for your comments!

Fatigued and chest pain, but not terribly sore! Looking forward to building up my endurance.

...and then today, a competitor on "So You Think You Can Dance"... split his pants. I can't stop laughing. Forgive me. It's just one of those universally hysterical moments.

stay cool!
et

All Star - Smash Mouth

Today felt miserable. Endless palpitations, short of breath, etc etc. Felt like all the busy days had really caught up with me. Pain and exhaustion.

And then my mom approaches me. "Water aerobics class in two hours. We're going."

Me (as always, a calm, quiet voice from within) : What are you, NUTS?

I'm proud to say we did leave the driveway, no thanks to me or my symptoms. Muscle cramps prompted classic teen scowls and lines like "You're crazy" and "Ow! Turn around! This is ridiculous!" But my mom was inspired by much more than my condition. Yes, friends. The class was FREE. Haha. Scots-Irish, represent, yo.

I felt like roadkill, but I lasted 20 minutes! Lots of chest pain, very tired. But I think it's a good move mentally. Baby steps. Next time I'll stretch more beforehand and focus on horizontal exercises. Staying upright, even in a pool, is difficult; swimming laps (slowly) would probably be easier on my heart. We'll see, we'll see! I'm in pain now, but overall I'd say today has been encouraging.

So look out, you locker-room ladies. They don't call me the Band-Aid Bandit for nothing!

bahaha. I gotta stop doing that.

peace out,
emma

Say My Name - Destiny's Child

So, so tired. My eyes feel funny. My heart is too fast.

sleepy sleep,
et

Saturday in the Park - Chicago

Quickie update.

Doubled dose of Beta blockers for the first time on Friday. Saturday morning, I felt pretty darn good! I did chores! It was great! Afternoon, not so hot; especially tired and I had trouble concentrating. The heat and humidity here pack a swift one-two! Little "episode" in the evening, lightheaded & palpitations with a side of muscle twitches. Today I'm hanging out in the A/C with an endless supply of water and V8. One of my tests came back showing that I dehydrate really easily. Summer's here - pump those fluids!

I'm SO happy I got to see some extra-special extended family! Plus the average-special extended family, haha, much love. :)

Happy Dad's Day!
em

Here It Goes Again - OK Go

I LOVE JERSEY BOYS!

I am sore and totally wiped out. I got one hour of sleep last night. :(

Went to see the POTS doctor this morning. Why is there no sense of urgency in that office? Rar. My thyroid tests didn't match up; rerun was only two vials! The doc is doubling my Beta blockers. We'll see its effect within a week.

It looks like monsoon season in Chicago! Please be careful on the roads!

love,
emma

Don't Stop Believing - Journey

Oh heavens. Too much to write.

Last night my mom and I went downtown to see Ellen DeGeneres! We got great seats - kudos to my dad! The whole evening was fun, but very demanding physically. The show will be broadcast on TBS next week; cameras exciting, microphones exciting, DJ exciting, but really? We came (and paid!) for Ellen to come entertain us, not for us to entertain the home audience with our dance moves. I liked grooving and singing along... but agh. So many commercial breaks. "Everybody on your feet! Let me hear you scream! Hands in the air! You're on TV!" *rolls eyes*

It's just so frustrating. POTS is such a pain! My heart was pounding so hard and so fast; my calves were tense and shaking from standing too much; I felt out of breath; I was - and still am - exhausted. The lights were so bright, and the speakers were so loud. What the heck. Agh. Ears still ringing.

But it was still an enjoyable evening! Highlights:

• Laughing pins crack me up.
• FREE CANDY.
• Sweet Home Chicago!
• Video intro - Ellen runs all over the city.
• Ellen waved directly at us! :D
  
• She TOTALLY aimed that prize-winning tennis ball at me. The guy next to us got it though. Psh. As if that matters. I know she meant it for me!
• I was picked to ask a question. And it was a good question. But they ran out of time. Yes, they ran out of time after six people were like, "OMIGAWD! Ellen! hihihi...umm...we have the same birthday! Will you have a birthday party with me?" Like what the heck kind of waste of a question is that. Six questions about birthdays. Doy, people. Missing the point.
  
• Got to sit in the front row after the show...pretending we'd snagged a tennis ball. The pair next to us were kind enough to adopt us for the moment. Haha. We pull bits like this all the time.
• I got a picture with Nick Cannon! [DJ, main guy from Drumline, etc]
  
• Next time we will meet Ellen, I'm tellin ya!
  

Last night's tix were for my mom's birthday, surprise from my dad ...and tonight's Jersey Boy tickets are for Father's Day, surprise from my mom! Two big nights in a row? What a coincidence! I am excited, but resting resting resting! Plus we've got my next Dr appt tomorrow morning. PHEW!

I estimate a week to recover from these couple days. My poor little hyper heart!

Keepin my feet up and my spirits high,
emma

The Sign - Ace of Base

From Tuesday - I guess it didn't post?

I had a dream about Love in the Time of Cholera. Now I'm going to have to finally read it, gosh darn. (lol - it's been on my list for years.) Well "read" on tape. More headaches lately, and my eyes randomly feel like they're burning. Weird stuff.

Resting up like nobody's business!
emma

Mr. Jones - Counting Crows

So, so tired. Silly eyes, silly body.

lemonade,
emma

P.S. OH MAN! Lemonade? Are you kidding? L-Emma-nade? Legit, prepare to be EMMAzed.

When life gives you l 'EMMA'ns, make l ' EMMA ' nade.

In terms of a book title, I think we have a contender on our hands here! (All right, sorry, sorry. Enough groaning.)

But seriously, I didn't even plan that one. I... I - emma - genius.

pffff haha!

Someday I will own a highly profitable executive firm... charging large sums for my pun-believable services.

K I just reread everything I wrote. Perhaps it's an emma-teur attempt, but I think I - emma - musing. *Aaauuughhh!* hahaha. Too much pun-loving. Please help yourself to a barf bag, compliments of Emma-rican Airlines. Doing what we do best.

Good night! I'll be here all week!

Listen to the Music - The Doobie Brothers

Today I came up with the world's greatest pun. Are you ready for this? Ready? Ready? Okay? K.

Why is Emma the most popular baby name in America? Because it's EMMAzing, that's why!

Get it? Amazing? Emma-zing? Haha! *Wipes tears from eyes* I am just SO funny! And it's like a hundred jokes in one, since it comes with the promise of infinite related puns. For instance, ahem,

• As magician: The EMMAzing Emma!
• As contortionist: She'll shock and EMMAze!
• As author specializing in corny jokes: EMMAzing Maize!
  

Sorry to torture. Couldn't resist. :)

I feel lousy. Tomorrow is another day!

love & whole grains,
et

Breakfast at Tiffany's - Deep Blue Something

Time is passing so slowly. Any slower, I'd be going backwards.

hurry hurry please,
emma

Bring Me To Life - Evanescence

Today I played my favorite reality game: Let's See How Long Emma Can Last Outside Before She Melts! 68 degrees. Twelve minutes. woo. uggh.

A couple of my symptoms have improved in the last couple weeks; nausea and memory loss are less frequent. I wish all my symptoms would go away entirely!

Thanks for keeping my family in your thoughts and prayers as we fight battles on multiple fronts. "This is how life is. Everything at once."

love,
et

Human - The Killers

SYTYCD is on tonight! Yes!

If you haven't seen Nerdography, it's pretty much the best routine ever. I miss RK already. If they don't bring him back to choreograph, I think I'll just throw a fit.

Got a haircut, yay. The average person might not be able to tell, but my hair has thinned out quite a bit. Just another one of those things. At the moment it's so hard, but I have to know there will be some crazy-good art borne of these experiences.

"Are we human? Or are we dancer?"
emma

Believe - Cher

Earlier today, my sister and I listened to the radio.

E: I remember when this song came out. I spent a lot of time trying to figure out if the singer was a boy or a girl.
J: [without pause] It's a boy.
E: Um...no it's not.
J: Isn't it?
E: ...it's Cher.
J: It is? [disbelief] It's a GIRL?

Followed by extensive reference to that episode of "Will & Grace." Oh, comic bliss, I tell you!

In a lot of pain. Frustrating.

sleep well,
et

Poker Face - Lady GaGa

Tony Tony Tony! Ahh!

My first time hanging out at a friend's house since Thanksgiving: physically trying but well worth it. I'm so proud I was able to stay the whole time! Over 3 hours! I laughed so much I lost my voice a little. Good times. Much-needed fun. :)

Observations:

• Performances from Hair and Billy Elliot were outstanding!
• West Side Story is timeless. Mambo!
  
• Liza Minnelli needs HELP.
• When that guy hit his head on the scenery [broke his nose!] -- terrible, I know -- but it was so funny, I just about lost it.
  
• People with British accents are about 10 times more likely to win a Tony...or any American award for that matter. They just sound so delightful.
  

This morning I had SO much energy! I'm not sure how to describe it; again, I'm trying to emphasize that I'm not better yet. Once in a while I just get a couple hours where I feel really hyped up. Just part of my up-and-down cycle I guess. Crashed pretty bad this afternoon, but it was nice while it lasted.

Still, 3 hours last night? I wasn't confident I'd even be up to going, so the moral of the story is YAY. Now to recover. I'm so sore!

let the sun shine in,
emma

Start the Commotion - The Wiseguys

Tony Awards tonight! Resting up.

My dear muscles, please stop spazzing out. Kthanx.

ba ba baaa,
et

Steal My Sunshine - Len

Still breathing.

Someday my life will be transformed into a sappy Lifetime movie. I will sit offstage in a director's chair and yell at the poor girl cast as me. I'm my toughest critic. (Ha, get it?) They'll have no choice but to fire the kid, bless her heart. Then I will win an Emmy for portraying myself in the made-for-TV movie "Emma: Not the One with Gwyneth Paltrow."

David Letterman will make "Oprah, Uma. Uma, Emma" jokes. The National Academy of Television Arts and Sciences will praise me for my insightful, heart-wrenching depiction of, well, me. No matter the critic's response, the fashionistas will totally diss whatever I wear. Hence I will wear sweats to the Emmy's and call it a "non-conformist statement." Yeah, take that.

Aw man. Same old story. Security will cite the dress code and kick me out. As my shoes flip-flop off the red carpet, I'll whisper to Paris Hilton, "Your epidermis is showing." Her confused expression will be worth the five minutes of fame, my friend.

Yep. It will be a smashing good time. =)

l-a-t-e-r,
emma

All The Small Things - blink 182

Still waiting for my latest test results. C'mon, people. Two weeks is plenty. I'm in a lot of pain. Hyperactive heart. My hearing is especially sensitive. Muscle cramping, trouble sleeping, nausea. Ugh.

I need more Souter-Sotomayor jokes in my life. Working on it.

Calcium, Magnesium, Potassium, Sodium. Yum?

catch ya on the flipside,
emma

Streecorner Symphony - Rob Thomas

Migraines, trouble focusing, pain, etc.

Just trying to hang in there. Gotta rest for now, but I just wanna give a shout out to everybody reading this! I'll try to keep you entertained.

http://www.juicyjuice.com/Products/Commercials.aspx

Juicy Juice Immunity. Because your kid is gross.

night,
et

Brown-Eyed Girl - Van Morrison

Not doing so hot today. :( Muscle tension in my legs is keeping me especially bed-bound.

If a tree falls in the forest and no one is there to hear it, does it make a sound? Well riddle me this, if you're strutting along the sidewalk and somehow manage to trip over your own feet, even when there's no one around, do you still feel stupid?

Therein lies your answer. :P

<3,
et

No Scrubs - TLC

Titles this June will feature my favorite summertime songs. I'm not really sure what constitutes a "summertime" song... most likely a lot of 90s music I used to listen to on my clock radio. It was pink. Or anything that makes you want to roll your windows down. Yay!

I'm doing okay. Lots of chest pain. Today was SO humid; I felt really dizzy after I got the mail. Icing my calves and feet when they cramp up. Eyes and hands give me trouble periodically. Writing when I can.

Ah! I sang for a minute and a half today! Followed by shortness of breath and light-headedness, but it was nice, I guess. Agh, what happened to five-hour-rehearsal Emma? Sing for five hours, give a concert, walk it off, go to work, go to class, write a paper, do a back-flip, negotiate peace treaties...

Someday,
emma