Wesley Woods

To my remaining cold symptoms [chills, little fever, sleepiness]:

In the next 24 hours, I will beat you to a bloody pulp. You've hung around for a week and now I'm kicking you to the curb. You heard me. The CURB. The curb where my industrial-size garbage cans shall overflow with shiny paper, paper that once concealed dozens of miniature bottles of hand-sanitizer. The heavy-duty 99.9% take-no-prisoners anti-bacterial kind. The kind kindergarten teachers occasionally bathe in. And I'm getting a dunk tank full of it, fools.

Merry Christmas, you rotten, filthy germs. I hope you...rot...in your own...filth. On the...curb. Yeah. Huh! Take that! Throwin' you a curb-ball. No gutter. No sidewalk. Psh. Ha.

Although we have nice neighbors. No! I take it back. Mean, nasty neighbors. Or... nice neighbors with WAY more anti-bacterial products than me. Yeah. Killers. Menaces, really. Run, germies, or we'll murder you and your whole kingdom-phylum-class-order-family-genus-species!

Side note: Dear 8th Grade Biology Teacher: Niiiice, right? From: Not Emily

But enough threats.

Kids, wishing you all a truly peaceful weekend, and the brightest of Christmases. The moon is quite pretty. Prettier than strands of blinking lights, even. Go outside and take a breath. May joy be present in your heart.

love and more love,
emma

Chelmsford, Massachusetts

Snowy, sickie. Better-ish. Now rather sickie. Tis the season to draw your family near and share a terrible cold.

gotta sleep more, eat more.

looking forward to seeing friends as soon as my sneezing ceases and fever's fallen. :)

et

New York City

It has been a while. Many good things. A few not-so-fun things. What have I been up to? Time-traveling. Awesome but exhausting. Each day feels like a week. I'm somewhere between 1983 and 2010, most often. Organizing my grandparents' house is a treat. I'm able to do a lot (by my standards), and I'm processing so much and growing so much. It's really good...but weird. I catch myself thinking, What year is it. How old am I. Did I actually have that conversation recently, or was I just reflecting on it? Why don't I have those pink footie pajamas anymore? Is it still Wednesday?

Newsworthy things:
-A POTSie friend of mine (mid-20s, diagnosed 1.5 years ago) is doing SO much better! She's living on her own and working - teaching ballet 6 days a week. Amazing!
-Another high school student in my area has been recently diagnosed with POTS. I look forward to talking with the family and offering our online community support.
-God is crazy-awesome.
-Giving inspires giving.
-I worked for 5 hours at my mom's office! Fun!
-SNOW.
-Got called for jury duty. What up, citizenship.
-Ensure doesn't taste so bad anymore. Drinking plenty of it.
-I'm going to be adult staff for March Snowball!!

So please excuse me, I have some read-give-sing-sort-stretch-wrap-dog-write-eat-sleeping type things to do.

(Sleeping around 10 hours a day. Yay!)

Favorite Christmas song you haven't heard yet: "Toy Packaging" by Sara Groves.

wassail,
emma

Sherwood Forest

Reading. Is. So. Fun. My. Brain. Is so. PRETTY!

 Over the weekend I went to the mall. (Whoa! I love the mall!) I mean, before it was just a mall, but now it's like "Look at me conquering the world." Walking! Touching clothes. Admiring landscapes at the art gallery (soon-to-be-out-of-business - big markdowns). And always staying away from the Scary Area for Sticky, Screaming Children. That's right, I know you know what I'm talking about.

I love mental stamina. Even when my body's giving out, I'm not so overwhelmed by things. Big/small places, lots of people, lots of aisles, too much merchandise, too many price/size tags, voices over the loudspeaker-- normally any one of those could cause me to get dizzy or confused.. The trip wouldn't be worth it, let alone enjoyable. But my cognitive function has been great lately! (Thanks to the Max GXL?) It's a huge step for me, to not only find what I was looking for, but then be able to browse a bookstore and read! books! for a long period of time! while standing! Praise the Lord. Good, good stuff. Someday I'll have days like that every day.

Physically, I'm doing okay. Biggest concern right now is eating. I don't have much appetite. Sometimes food tastes like ash. Still I cannot afford to lose any more weight. Drinking Ensure, plenty of water, Gatorade. Trying to eat mindlessly just to get enough calories. I find I'm not producing as much saliva. It slows down my eating; I have to chew more, so my jaw gets tired and even cramps. Silly of sillies!

Fair trade products are the best! Support farmers and artisans from around the world. Free catalog at www.serrv.org

Happy Thanksgiving! (If you're in town over break, I'd love to see ya! Txt it.)

fleece and flannel fluffy panels,
et

St. Paul's

Hi! Sorry I haven't been writing- it's a good thing in this case. Only have a few minutes; brief summary.

What a week. Enjoyed a successful stay with Aunt Lauren at G&G's for a few days, taking care of the pets. And I had so much energy with the weird warm weather that I got to tackle a couple organization projects. Next up: gift wrap closet of doom! No, not doom. More like, glittery plaid Santa snowmen ribbon/bows, with coordinating paper and tissue paper from Marshall Fields. (Vintage!) Fun. Fulfilling. I like feeling useful.

What else... saw a couple plays. Shopped. Slept. Went to my mom's office. More interesting stories for later. I've been doing pretty well and keeping busy. I'll be back on the doggie duty later this week. My brother is coming home from Japan tomorrow! Hooray!

emma

Allentown, PA

Getting cold. Trouble eating/sleeping. Especially eating. Saw my family doctor about the weight loss. She didn't know, but took three vials of blood for various tests.

Rested up for my sister's show, West Side Story, which was great! Even though I'm particular (see also: snobbish) about dialects. If yeh from Joyzee, es gotta be Joyzee trew-n-trew, arrite buddy boys? Accurate, consistent tone of voice adds to stage presence like you wouldn't believe. Or rather, you would believe, as an audience member, that that ain't just some kid in an outfit onstage. That IS Baby John, Krupke, Maria.

Staying with my aunt - my first night away from home in so long! Yay. My room here is toasty; my toes are happy. :)

night,
et

The Clearing

New theme: places. A place that's on my mind. Specific, common, imaginary, whathaveyou.

Very busy day over the weekend. A treat. I like people. So many good, good people.

Very sleepy. Been sleeping a lot. At least 10 hours a day. Yup. Time for the sleep.

asleep.

Sentience

Welcome to the Midwest, land of  freak late-October windstorms. Correction: windstorm, singular. We haven't had anything close to this in a long time. Today, in fact, Chicago meteorologists recorded the city's lowest (barometric) pressure in 70 years.

 Huh. Who woulda thunk it. I am doing awesome. AWESOME! I've been so hyper and multitasking online and reading and free music downloads are everywhere! Happy! Also somewhat confused, and wondering if I'll crash tomorrow. Whatever! Don't question it! :)

Brooke Fraser's new album. Yay.

love-a-love,
emma

Scrimmage

Hello! Birthday week: excellent. Movies: Fun. Got complimented on my shoes. Me and my social justice are quite a trendy pair. Book sale: Swoon. Speechless. Nat King Cole 2-disc CD for $3. Givemethatit'smybirthday! 

Sleeping somewhat better. But still losing weight. Bad. It's tough to eat when I have no appetite. This week I was looking forward to a presentation for an alternative therapy, but felt sick all of a sudden and had to miss it. Mrf. Will try again next time.

Events of my life may be seemingly out of order. Yes. Yes they are, to me. But what I love about right now is the time I have to explore and create and imagine...absolutely anything. There's a kind of freedom in prison. Am I stuck? Looks like it. Feels icky. And slow. And not very fun. But at the same time, I'm learning to embrace the simple things, to identify what's important, and truly to escape pain through music, art, etc. It's a discipline. I guess it's like meditation, except more like Fantasia. I'll try to explain it more when I can.

I'm so thankful for this year. I turned 20 on 10/20/2010. I outlived Joan of Arc. What's next? :)

Hope you all are having a terrific autumn!
emma

Kiwi

i guess i don't have too much to say. this song speaks. blessings and potato chips, emma

lyrics from "Season" by Jenny & Tyler

after eeg’s and mri’s, i can’t explain why you’d put me through this
and when hamlet’s lines are filled with rhymes, i have a hard time seeing what your plan is

You say all things work together for my good
You say be patient but i wish you would...

(chorus)
show me what this season in my life is for
i’ve been trying to seek You, seems You're shutting every door
show me what this season in my life is for
‘cause i want so much more, so much more

the doctor called to say today the medication isn’t going my way
your paper doesn’t speak to me, reads red ink in every margin I see

You say ask and seek and knock and you will find
why won't You calm the worries on my mind

(chorus)
show me what this season in my life is for i’ve been trying to seek You, seems You're shutting every door
show me what this season in my life is for
‘cause i want so much more, so much more

work your renewal through my soul
bring me through the fire as gold
Living water come and pour over me
wash me clean

(chorus)
show me what this season in my life is for i’ve been trying to seek You, seems You're shutting every door
show me what this season in my life is for
‘cause i want so much more, so much more

Hemidemisemiquaver

[In music, a 64th note.]

It is the tenth day of the tenth month of the tenth year, and my birthday is in ten days! 10/10/10, T minus 10. To quote a personal hero of mine: Tender.

Tomorrow I start a new adventure! It's a dietary supplement called Max GXL. A POTSie friend of mine has significantly improved on it. It may take about 3 months to see a difference. And - GO!

I want to conduct Niska Banja. I miss my choirs.

mindy is so cool!
et

Snollygoster

Bad day. Bad couple of days. It's getting cold out, which I normally don't mind at all, but now POTS is beating me up bad. BAD. Stupid pain. Go away forever. Leave us all alone! Nyah!

Have to eat. Have to sleep. Keep finding music, keep, keep, sleep.

Fare thee well, Cathy. You and your sales clerks will always be a part of my inner shopping psyche. ACK!

zzz,
et

Bibliobibuli

Tests came back. Nuttin' in my noggin. Good news, but also slightly frustrating. Next up: more alternative therapies... yay?

Haven't been sleeping very well. Most days I'm up around 4. I made a New Year's Resolution: Gain 10 pounds by New Year's! My mantra: Please try and eat SOMEthing.

Keeping people entertained. Or at least helping them procrastinate. Hyperbole and a Half

cheers,
emma

Psithurism

My MRA was meditative. Swaddled in pillows and blankets, earplugs, donning a football mask, I spent 15 minutes in a coffin. Computers and lasers and things I don't understand, searching that which keeps me alive. What connects my mind to my heart? How was it weakened? Where do I go from here?

This feels like the eye of the storm. How is this moment so still within so much NOISE!

God, why are you so difficult and awesome? Your methods are ri-friggin-diculous sometimes, but you weave. You work. You're the God. Here's my life again. Make good stuff happen.

Thoughts and observations:
- It was shorter than my MRIs. Didn't have to hold my breath or other commands. No IV - Nice!
- The people who worked there were SO agreeable and SO helpful. Nadine, I hope you get to spend more time with them.
- I didn't get a chance to perform my new hit single, "We All Live in an MRI Machine" ...huh? huh? Funny, right? Yes. Another example of what you can come up with on four hours of sleep a night! [Professional writer. Do not attempt.]
- The next challenge on Project Runway MUST-MUST-MUST be to design a better hospital gown. Come on. What would Michael Kors say?

I feel sick just looking at that! The color washes her out. It's falling off her shoulders, and Heidi, look at the back. Did she just pull this out of the waste-paper basket, because it has TRASHY written all over it. I thought the medical world was full of smart people. Oh wait, they're the same ones who came up with the paper vest. Have you ever been to an OB/GYN office that wasn't freezing, Nina? No? And they give you a vest. A vest made of paper. Figure-flattering is the least of our worries. Women deserve a hospital gown that could be worn on the runway. It is a GOWN after all!

MRA results Monday, I hope?

et

Expiscate

Found it! Found it! Only took 9 months, but I finally found this song-

(from December)

And I also don't know the name of that great mixed a cappella Christmas song I heard the other day. It starts "by ya ya by yun da da da" and then moves into a rhythmic "chigga din don dy ya" ... "bum bum yeddo bum ba yadday" ...?

Lol. Parlez vous Nonsense Jazz Syllables? If you know the song, please help a sister out. :-)

It's called "Familia" by Brazilian musician Sergio Assad. Performed by lots of other Assads (Odair, Clarice, Badi, Angelina, Carolina, Rodrigo) and Yo-Yo Ma. No recordings online to be found. Teeny excerpt here.

"The release topped both the classical and the mainstream Billboard charts and won a Grammy for Best Classical Crossover" (Opus 3 Artists, 2010).

Score.

As for me, resting up today for my MRA of head and neck. Smile, blood vessels!

Happy Autumnal Equinox!
emma

Defenestrate

meaning: to throw out of a window, e.g., After the receptionist lectured her for 10 minutes on other people's stupidity, the kindly young patient wanted to defenestrate the telephone. Could it indeed be her fault the doctor had illegible handwriting? Is this not a regular occurrence? What do I know. I'm just a silly girl. It says so, right there on all of my medical records. Born in NINETEEN-NINETY? And this test is for YOURSELF? Are you SURE?

Ah-ha-ha no, my shrill-voiced friend. Yooou're right. You have me all figured out. Just another prank call requesting an infrequently performed neurological exam. Couldn't fool you, miss. She must have heard the riot I caused last week. I rang up a less-than-well-to-do taco establishment and notified them of my chronic condition called POTS.

A small shame to society, I am. Pestering poor taco salesmen and pharmacists. Day and night, night and day. A menace. A practical joker sloppily signing MD's notepads, selfishly seeking the thrill of having my brain professionally photographed. I'll change my ways, Nadine, I will! Right after I put those pictures on the internet.

So here's hoping I don't meet Nadine in person this week. If she keeps me in the waiting room for 20 minutes, then I'll know it's her. ("Hold please. You're at the end of the alphabet.") Then I will defenestrate her lousy phone and computer and fax machine. And maybe swipe some fluorescent Post-Its... for later defenestration.

Kidding, kidding.

Besides. It's on the first floor. How much fun could THAT be?

paperweights,
et

P.S. - My blog (yes, the one you're reading right now!) is listed as a source for the POTS page on Wikipedia! I found out a few days ago, by my "Stats" page on my Dashboard. The numbers blow my mind. In the last 60 days, Stronger On The Other Side has been accessed 2,263 times (not including me). Most people are from the U.S. Second place goes to Luxembourg! China, Germany, Canada, Australia... are you kidding me? So cool. POTS awareness to the max.

Hope you are well. Any requests for future posts? Would love to hear from ya!

Here's the Wikipedia link (Citation #18)

Syzygy

What a weekend. My family is so loud and so loving. I had a blast. Our schedules were pretty flexible, allowing me to rest between activities. I think I earned an equivalent of 10 credit-hours of Marx brothers and Stooges references. Laughing literally makes me forget POTSy stuff. Minimal pain; fatigue and tiredness were main symptoms.

Congratulations to Matt and Katie! The party was so fun. I felt like it was a celebration for me too, just being there. I wore heels for this first time in almost 2 years!

Now we're home. I have 11 bruises on one leg. I'm extra tired. I lost my voice a little. So worth it! So, so, so thankful I was healthy enough to make the trip and rock out with my aunts, uncles, cousins, and Katie's grandma. So thankful for my wonderful family.

Bob's your uncle,
emma

Queue

Pain yesterday. I felt like there was something stuck between my brain and my scalp. Like a piece of crumpled-up construction paper. Maybe orange. Burnt orange. Like the color that gets neglected at the arts-and-crafts table. Bent and cut and used as confetti. And then the confetti got stuck in my brain. Seriously, I wanted to take off my scalp and wash my brain.

Anyway. Doing better now. It is 7am, and my family and I will be leaving shortly for Michigan, where we will meet up with more family. Predictions: chaos and Bill Cosby.

Hoping I have enough energy for a few days of craziness. I am determined to make it out of there alive. Israel class next week!

StoryCorps is so eye-opening. Enjoy this video:



all the best for your weekend!
emma

POTS Blogs

I slept for 8 whole hours last night. The breeze smells like autumn. Tomorrow I get to babysit. Smile-worthy.

Sending smiles out to POTS and CFS bloggers, and blogging in general. What a wealth of knowledge we each have, and how easy it is now to share our experiences. Especially in suffering and confusion and frustration, I hope you find these pages helpful and/or humorous.

Michelle: http://bobisdysautonomia.blogspot.com/

Alyssa: http://feelingpotsy.blogspot.com/

Teresa: http://toomanyheartbeats.blogspot.com/

Robyn: http://otherdumbquestions.blogspot.com/

Tyler: http://www.12morepages.com/

Emily: http://invisibledisease.webs.com/

http://www.greenwordsgrowing.com/ ("Green Words")

http://potsitivelyfabulous.blogspot.com/ ("Little Teapot")

[Used without permission. Is that OK?]

I avoid cliches like the plague,
emma

Widdershins

Couple rough days. So fatigued. Not sleeping much after 3 am. Ugh.

I am devoted to my studies, nevertheless, and have added The Marx Brothers to my curriculum. They're genius. After Monkey Business, I'm hooked.

"Oh, why can't we break away from all this, just you and I, and lodge with my fleas in the hills? I mean... flee to my lodge in the hills."

stumbling along,
et

Buoy

Wed/Thurs - EXCELLENT. No palpitations/mood swings/other side effects. So much energy! Did sprints, weights. Started my first Austen (Yes, Miss Woodhouse, you ARE a manipulative little sweetheart).

Today - Rather good. Slept a lot. Not too sore. The weather is beautiful and mild- probably helping me out.

I don't know how long this grace period may last. Gotta enjoy every minute. Even when I'm bored or lonely, it sure beats feeling sick. Just with my cognitive function better, I can surf the web and keep active in pursuing my interests...a big step for me. Love it.

best wishes for your weekend!
et

Rambunctious

The Emma Trevor Institute of Thought and Design is back in session! Yippee! I got my schedule today. (Gosh, my professor's handwriting is so familiar!) No dates/times/deadlines. Just get healthy and learn a lot in the meantime. *Class listing subject to change whenever I feel like it.

Fall 2010
Emma Trevor
ID# 000001

-Singer/Songwriters
-Fitness and Wellness
-Trends in Contemporary Musical Theatre
-Recommended Books
-Dialect & Communication Studies
-Cultural Studies: Southern Africa
-Foundations of Faith
-Foreign Films
-Bulletin Board Decorating Sciences

Plan of attack: Youtube, Wikipedia, books, magazines, TV. Mostly the internet. I'm so happy I've been able to read as much as I have been. Take nothing for granted.

I guess it's like a big project. Curiosity as distraction. I can work with that.

Best musical find: "Alto's Lament" http://www.youtube.com/watch?v=HABEHXu40fw&feature=related

happy semester,
et

Vignette

Major ups and downs. Achy. Gotta give myself time to adjust to meds.

Tomorrow my sister goes back to school. The days might be quiet and still. All the more reason to dive back into meditation, right? To transform through the renewing of your mind-- not only restful but develops insight as well. What will this year bring? God only knows. Be not afraid to find out. :)

peace,
emma

Annihilate

Said good-bye to Kangen water. It was a good run. Thanks to our friends who lent me their machine!

Started the Nuvigil this morning (after a fitful night's sleep and feeling exhausted this morning)...and AH! I am so hyper! Sweaty and got the jitters, but wow, I am so awake! I took the wrong dosage by accident (oh...just HALF a tablet), so I'm hoping tomorrow I'll be feeling capable but not spastic.

Wee! Energy! Jumping bean! Ah!

Blago? NOOO!
et

Baba Ganoush

We have electricity again > A/C and the internet > I should write this already.

To be brief and honest, my visit with Dr. Grubb did not go well. That is not to say you should not see him or another POTS specialist. He is very knowledgeable, certainly, and mentioned some good points, namely that that those who get better will continue to get better. I'm glad he was upfront about the fact that I may have more relapses, and the road to recovery may be bumpy still. I get that. And it's very hard to hear "be patient" or even "it'd be a fantasy to think you'll go back to the way you were". Ouch.

His bedside manner is just... off-putting. He talked a lot, getting on tangents that had nothing to do with me. Dr. Grubb is very concerned about pregnancy. Three of his youngest POTS patients got pregnant this year- and that kind of bodily stress would wreak havoc on the autonomic nervous system. I understood and said I wasn't one he'd have to worry about. But still his lecture continued, and it felt like an accusation.

The appointment must've been an hour and a half. Not once did he ask about my symptoms, my day-to-day pain or severely limited lifestyle. He had no comment on my current medication. Our questions about Kangen water, light therapy, soundwave therapy -- things that have helped other people through pain and stormy weather -- all ideas were dismissed with an expression that could be best described as insulted.

Whatever. At the end of the day, I'm the patient. I'll do whatever helps me.

He gave me a prescription for Nuvigil - a stimulant used predominantly by the military and night-shift workers. I will keep it around and can take it on an as-needed basis.

Other highlights: Reconditioning, hydration, don't get bitter, take small steps, "don't freak out". He highly recommended taking short courses online at www.teach12.com, to test my stamina for sitting in class and being able to pay attention.

Other breaking news: a friend-of-a-friend who has POTS is getting an MRA (like an MRI) done this week to analyze the arteries to his brain, because the brain being deprived of oxygen is what causes his POTS symptoms. Will wait to hear what happens!

To whoever left their peanut shells all over the rest stop parking lot for me to stomp on: Thank you. That was a great stress-reliever. :)

et

Farce

Not much to report. Big ups and downs with the weather. Love the ups!

New favorite choreographer: Kate Jablonski (!)


peace, strength, all that good stuff,
emma

Armada

Ups and downs this week. But really, five hours of hula-hooping, bubble-gum-bursting, forgetting-I'm-sick birthday party FUN... totally worth a day in bed. I love catching up with old friends and making new ones. :)

Things I like today: LOST, What's Eating Gilbert Grape somethingstore.com

chocolate basket,
emma

Swank

( ^ Found on another POTSy's blog - couldn't have said it better myself!)

Replied to a bunch of emails! My brain is doing so well! Seeing Dr. Grubb on 8/13 :-)

emma

Colloquial

Today I met a cute boy at a garage sale. His name is Tyler. He showed me his old car, told me about the new school he's starting in the fall, and got my phone number. Did I mention he's five? Yes, years old. His Cars car ("life-size!") broke because he buried it in a sandbox. At day camp. Recently.

This is a glimpse of the perfect babysitting client. Fun-loving, talkative, great location, and a fan of teenage mutant ninja turtles. I liked how he introduced his sister. "She's zero. [Thump] See? She fell down. She's a baby."

It's been a great week -- only a few rough hours with the weather changes and increasing the pH of the Kangen water. It gets complicated that you can't eat or take meds with it, but I think the "magic water" is helping! Hoping things continue to get better, so I can spend more time with little, small people. Small people who run down the driveway after just meeting you.

"BYE...uh...EMMAAAA!!!!"

infectious happiness,
et

Harbinger

Maybe read this one faster. Ready? Graduation party--Kangen water--running errands is fun--getting dressed in real clothes! I love books--Dr. Grubb delayed again--the CHP looks after its own--Krannert happy face. Then tired and grouchy and palpitations--slept 0 hours and 0 minutes--hit my head on the bathroom floor--"Do not be afraid"--then the power went out for 12 hours and how did people live before refrigerators? Sunrise. Stayed awake the whole day (yes!) and then slept for 11 hours! It was de- waitforit- lightful.

Saturday was the best day ever. They called me and I. BABYSAT. MY. CHILLUNS! zomg. We played soccer and had a party. Kate told me everything that I missed in the last 2 years. (Retainer-expander-braces-headgear! "Since February, Emma. FEBRUARY.")

Breathe.

In video games or seeking compromise at bedtime, Jack's favorite phrase is "Work with me". The first time he said those words, it struck me. That's my prayer. That's what I'm praying for. Work with me, God. And he does...?! God sees me and sympathizes with my pain always, which makes him good. But how he works, how he weaves messiness into opportunity, sooner or later, near or far, that's what makes him great. From tragedy to triumph, he's there. And yesterday? Triumph.

I think it starts with being open and embracing a spirit of humility. I'm just a teeny microscopic presence in this world. I'm not much matter, but I do matter. Who knows what's in store for the days ahead. All I can ask is, work with me. :)

emma

Precipice

Pretty decent week! Got out for at least a little every day. Woot! Trying to pace myself and predict when I'll be doing well. The best thing a friend can do in this kind of situation is to be understanding of the spontaneity required on my end. I'm like, "I've been resting all day! Let's go shopping!"

Today I started Kangen water. "Kangen water is simply an easier way of stating: Alkaline, ionized, anti-oxidant electron rich, restructured, micro clustered, active hydrogen saturated, oxidation reduced, powerful living water." I'll keep you posted.

pH,
et

Ninny

Thanks be to Sarah, who warned me about the caffeine in Sunkist, and thus saved my 4th of July. I had a good day! Deerfield parade, rested, fireworks. So groggy today, but hey, it's a small price to pay for a holiday. Remember last year when I had to stay home because my BP was 75/40? I'm much more stable now in comparison.

Invictus is a great movie. Oh South Africa. I'm homesick for a place I've never been to.

shosholoza,
emma

Equestrian

New theme: words that are fun to say.

"UniversityOfToledoMedicalCenter-Cardiology-ThisIsCarrie HowMayIHelpYou?"

Dr. Grubb's office is behind, so they won't be scheduling August appointments until July 9th. Hrmf. Hope I can still get in soon. Nasty tremors this week. We're looking into special POTS vitamins and Kangen water in the meantime.

Ow. Suddenly, headache. Otherwise a good day. Later.

et

The Kite Runner by Khaled Hosseini

It is 6:27 A.M. I have been up since five. unhh.

This HAS to get easier.

Yesterday I watched My Sister's Keeper. They say the book is a thousand times better, so I'm not sure if I can truly recommend the film. But it was therapeutic, how much the story reminded me of my own life. Lying on the couch, my blood cold and my muscles aching, having done nothing all day-- I looked at Kate Fitzgerald-- and we were both in pain. It was like a mirror. And Anna, fighting for her own voice. Or Jesse, desperately seeking an escape. Sara, the mother whose obsessive perseverance goes so far as to blind her judgment. POTS is not leukemia, but it is a chronic illness. There were so many moments I've known firsthand. "Eat more." "Chin up." "Get out of bed." "Just try harder!" I smiled. I cried.

Sad, disturbing, and beautiful.

I'm going to try to sleep now. Please please please please please.

love,
emma

The Magic Locket by Elizabeth Koda-Callan

Happy 9th Birthday, Zachary! [New rule: kids who wave at me from the day camp bus get special shout-outs.]

Bad thunderstorms this week have been rocky for me. Probably the worst day I had this year. Keeping stocked up on entertainment for my couch-bound hours - it's supposed to rain more this weekend. "Ace of Cakes" and Fern Gully!

My neighbor asked me to sit for her family this summer -- five beautiful Israeli kids who visit annually. Had to turn it down. Stuff like that feels awful. I missed the Backstreet Boys concert last week because I had a bad day. When will anyone be able to count on me again? (I'm sorry, Brian Littrell!)

I'm doing well at the moment. That's all. I'm determined to go DO something.

et

No More Dead Dogs by Gordon Korman

The Spider-Man musical should be awesome. Music & Lyrics by The Edge and Bono. And... directed by Julie Taymor! Ah! I hope she outdoes herself. How anyone could top The Lion King, though, aaahhh. I'll likely stalk the production of this show.

I feel like crap. Palpitations, pain. I'm pushing myself to go on little excursions with my sister. She had to get her phone fixed. The mall was so cold I had to buy a sweater. I paid with cash and the woman looked at me like, what is this. I've never had to handle money before. Weird, huh, how our culture changes so much.

Quality time with the dogs,
emma

Frindle by Andrew Clements

Toy Story 3 was worth the rest before and after, and yes, even the power outage in the middle of the movie. Special thanks to the 7th grade girls in front of us. Slow clap? So fun. Fail, but so fun.

This morning I was doing really poorly and thought it would be a bed-bound day. Happy to report a short venture to the store.

Maddie's coming tomorrow!
et

Matilda by Roald Dahl

There should be a grocery store check-out for people who are far too tired to stand in line to check out. I see all you red-shirt-and-khaki types roaming about the store, with your walkie-talkies and your name badges like you're so special. Well, hello special DAVE. That's a nice polo you have on. Listen, I have a little favor to ask. Ah jest git so tired an' dizzy from walkin' around this great big sto'...couldja please open up register 23 for me? Gosh, sugar, you'd jest be my hero!

Alas, chivalry is dead, my stamina is fading, and there's only one lane open. I lean against the counter, waiting in line between a screaming baby and a frustrated mom going Emma. Emma. Emma, get back here. Emma, don't touch that. Wait til we get home, Emma. Emma! Emma!

BREATHE. Tomorrow will be better.

et

Belief by Francis S. Collins

Great weekend. Heart hurts now, blood's cold. It's going to rain a lot tomorrow. Plan of attack: Sara Bareilles, salted popcorn, and Disney movies. Now: sleep.

zzz,
emma

The Last Lecture by Randy Pausch

It's humid. I'm resting. Things are still a lot better than they were this time last year. Gotta remember that!

I love the new format of So You Think You Can Dance! My favorite piece of the night, This Bitter Earth, beautifully captures the stages of life. Choreographed by Mia Michaels. http://www.youtube.com/watch?v=LVWRS7r_oQg

Nice work, Blackhawks. Now Chicagoans are in a good mood. :-)

Hope you are well!
et

Stargirl by Jerry Spinelli

It rained. I felt crummy. Tomorrow will be better.

loose change,
et

Snow in August by Pete Hamill

So then there was a week I forgot to blog...because I'm doing SO WELL!! Ah!

Highlights:
- went to the mall! bought clothes that fit!
- planned and executed my sister's party (success)
- achieved unprecedented popularity haha
- lots of energy! walking and swimming and likely attacking Olivia's trampoline
etc etc.

I'm really sore! And happy!

love love love,
emma

Chasing Redbird by Sharon Creech

My neck's doing a lot better. Fewer instances of palpitations, but still an occasional fever. Wish I could say 'no sweat', but the humidity does get to me once in a while.

I love books. AHHHH. TV? What's that? If my eyes are doing well and my brain is doing well...I'd rather be reading. :) Proud of a long day today. Surely some more on the way!

peace,
emma

Holes by Louis Sachar

Long story short, 4 teen girls driving safely. We were rear-ended, there was damage, it was the other driver's fault, the police came. We were shaken but had SO much fun anyway! Neck pain today, gotta get it checked out.

I'm happy I've been doing better lately. It's hot out: lots of salt and fluids!

kim possible,
emma

Extremely Loud and Incredibly Close by Jonathan Safran Foer

I expected my MTV experiment to last about 3 days. Two hours and 4 minutes of "My Super Sweet 16" turned out to be MORE than enough exposure for this wannabe anthropologist. I mean this in THE most respectful way-- no judgment, just observation.

Our sense of entitlement is killing America. (See: Housing crisis.) How to resolve irresponsible consumerism: Respect your body. Build self-esteem. Foster strong relationships. Earn an honest living. Only spend what you can afford. Help others. Listen more. Breathe.

Whatever floats your boat!

et

The Gospel According To Larry by Janet Tashjian

One day I had enough energy to do laundry. Heart's tired today. Giving myself some time to adjust to the humidity. Lots of water and dumb TV, which can inspire thought-provoking conversations.

Why do people do what they do? We know "reality TV" can serve as a window or mirror into a culture and its values. But specifically, how does television glamorize and even normalize self-destructive habits such as eating disorders? Certainly the nature of advertisements exploits every possible insecurity from social standing to sexuality. And what better demographic to hack away at than young persons just developing their sense of self. Collectively, teenagers are known to buy almost anything they're told to. But what exactly are we selling?

And thus begins my new study: MTV and me. It'll be good. Painful, but good.

emma

Fahrenheit 451 by Ray Bradbury

Oh y'know, up and down. taking it easy. Writing this blog. Every so often, I'm humbled. It does matter. Fight on, POTSies. Emails are always welcome.

Memoirs
[Dialogue. Present Day.]

Wait, Travelocity? Travelocity.
Yeah?
Travelocity! Like Travel + Velocity...!
[Aha moment] Are you kidding?!
NO!
Wha--
I know! It's genius!
And all this time, I thought it was just a weird word.
Yeah, like, travel-o-city.
Like Luck-o-the-Irish
Or Cheeri-o-suitcase!

ha...HAHA!
What.
Remember when you thought...when you...haha.
I know what you're going to say.
Remember when you thought a porta-potty was a PORTAL POTTY?
Like a magical telephone booth for big kids.
AH HAHAHAHA.
Yes I remember. Stop laughing. But it wasn't my idea. It was the guinea pig girl.
She came up with it?
Yeah. Pretty sad that I took that idea.
Portal Potty. Haha. That girl, did she even have a name?
No. She'll live on forever as the only person we ever knew with a guinea pig.
And a sincere appreciation for toilet transport.
We salute you, GPG.
[salutes] WAIT. AND she had a lawn gnome!
[gasps]
Travelocity, my friend. Travel-o-city.

et

The Giver - Lois Lowry

The three-year-olds taking swim lessons today made me smile. Happy happy. I didn't even panic when ol' Beige Trunks walked by. Well... I didn't panic as much as the first time.

My old study hall teacher won a Golden Apple Award! Mr. Jain, I just want to say: You're welcome. ;-)

Hope you all have a good "Waidback Wednesday. 'cause no day starts with an 'L.'" (Natalie Tran, 2010).

et

The Alchemist - Paulo Coelho

Sickie. Bleh.

Many carrying trees, happy travelers rollerblade through an airport. I wear no shoes. Where is the gate? Chex Mix has spilled in my backpack. Why doesn't the boarding pass fit in my pocket? Stupid girl jeans. I don't have time to buy another snack. Two strangers yell at each other for talking too loud on the plane. The in-flight movie is The Devil Wears Prada, but I'm not really paying attention. I'm going to France.

Students abroad, my thoughts are with you. Have fun. Wear shoes?

bon voyage,
emma

The Screwtape Letters by C.S. Lewis

Things are going well. Glad the thunderstorms are over. Sleepy.

Reading is fun! Stephanie is cool!

clive staples,
et

The History of Love - Nicole Krauss

Mornings are tough. I don't sleep too well past 4am, but I do have these AWESOME dreams. So entertaining. I'm either going to be a third grade teacher or write the lyrics for Arrested Development: the Musical.

Rhiannon is going to be a soprano. It's official. Soon as she's talking, get that kid to voice lessons. Seven months is not too young to start a career! Have her people call my people. Beautiful babe. :)

Reading and very happy. Swimming and sore.

freerice.com,
emma

The Help by Kathryn Stockett

I can't believe it's her first novel. Great voice, story, structure. My highest recommendation. (I read 450 pages. In two and a half days. AND it was cloudy today! Go blood! Go oxygen! Go brain! Celebrate the good times.)

So many emails, letters, and phone calls from the last several months... hope to reply to some this weekend. I'm thankful for you!

peace,
emma

Gone with the Wind by Margaret Mitchell

And then I read an entire book in one day. ME. READING. 302 PAGES. HAPPY BRAIN!!!!

Ups and downs today, overall doing better but still tired and haven't gained any weight. I'm eating! I promise! Lots!

Lee DeWyze for American Idol.
Choosing to rap your order at a drive-thru should not result in jail time.
Speedos are not NEARLY as scary as beige swim trunks.

read!
emma

The View from Saturday by E. L. Konigsburg

Titles for this month are inspired by books that have affected me at some point in some way. Yes, after four months of Pandora QuickMix song titles disguised as a theme, I may occasionally put thought into these.

Billy Elliot was great. I could do an in-depth Chris Jones-esque analysis of the (explicit) script, score (meh), staging (cool), and choreography(!!)... but this blog is about me. I'm SO happy I made it through an entire evening sitting up! And this was after two days of feeling crappy and I hardly slept AND it was raining. I still made it! One step closer to Broadway. Now if only I had that kid's pirouette. I need to get back into the arts. See: Act I closer - "Angry Dance." :)

Meditating again. So great to clear the mind. A little spring cleaning, if you will.

Thanks to my fourth grade teacher who read to my class every day, even when my classmates were playing MASH or sleeping.

mrs. olinski,
emma

About A Girl - The Academy Is...

Last night I dreamt about Disney World, a marching band, and Crystal Light. And a vending machine named after my friend from elementary school. Huh. Whatever happened to her.

Maybe she set her sights sky-high and got something named after her. By a loved one or a charitable organization. Or someone who knew she'd wince at the idea. Something useful. Or insulting. A vending machine.

If I had a vending machine, it would torture people. Like a giant kit kat logo on the side, and office workers going Crunch!(smile) and playing the jingle...and smiling...and close-ups of the wrapper...and sliding around on their desk chairs... you know, the normal candy bar experience. But instead the vending machine is filled with, I don't know, salt and vinegar potato chips. And nothing else.

The automated voice prompts you to select one of its options. Please? Because you. Need a break. :-)

Curious. There's no place to insert coins, dollar bills, or even swipe a credit card. Are the chips free? Doors slam in the distance as the last of the commercial crew exits. You try a few buttons and wait. The message cries out urgently. Select. An option below. Please? [video of spinning candy] Because you. Need a break. :-) A light flickers. The hallway darkens. How long have you been standing there? [Spinning candy. Spins faster. Automated voice cackles as best it can.] Ah hah. Ah hah.

Far away from all the normal vending machines, the monster mesmerizes and consumes you... through...the snack tray!

You first. And then your co-workers.

If they notice you're gone.

[Thunder and lightning!]
emma

The Little Things - Carlos Bertonatti

It rained. I felt icky. Three small dogs in the house made things more fun though. Some better hours today. Making progress; moved contents of the room to closet.

cheryl frasier's idea of the perfect date,
emma

All For You - Sister Hazel

Slowing down the last couple days - sore, tired. It's going to rain soon, so I'm not doing as well today. But I'm thankful for an amazing week of feeling better! Wish I could predict more. Who knows!

Have a great weekend.

et

We Live - Superchick

I'm doing really well. Today I spontaneously befriended two five-year-old girls on my street. (Little-girl squeals) "PUPPIES PUPPIES PUPPIES PUPPIES!" We ran around for an hour. AN HOUR. I've had so much energy since I got back from San Diego. It's almost weird. I'm reading, exercising, I got to attend my sister's voice recital... it's great. Taking nothing for granted.

And I walked around the MALL. I haven't even BEEN to a mall in a year. Not tired at all. Ahh yay.

The Emma Trevor Institute of Thought and Design is sponsoring a room makeover. My sister and I are designing and thinking. Cotton Whisper. June Vision. Pensive Sky. Whoever gets to name paint colors, I'm jealous.

emma

P.S. TAX SEASON IS OVER! :-)

There She Goes - The La's

Another great day...? I'm surprised. I haven't changed meds or exercise or anything. But hey, I'll take it! Productive, walking, swimming, decent focus, reading some. It's happy.

Ah, sorry. I got a virus. Don't open the email! Thanks.

et

Drive - Incubus

Back in IL. Today's been exceptionally good. Zero frisbee skills, but the pup doesn't seem to mind. :)

ciao,
et

News

My endurance is better in San Diego. However at this point, I am not healthy enough to withstand the rigors of the University of San Diego. It's too much of an academic risk, and the hills are especially difficult for me to navigate.

The plan: I will return to San Diego and attend a (level-ground) community college if I am not better by the end of summer. It'd be ideal to avoid the "fall slide" POTS throws at me when the seasons change. Meantime, medications will be adjusted, exercise enforced, and spirit encouraged.

Balboa Park has a dog park. There are dogs. They are cute. Almost as cute, I find, as the nameless boy, the little Asian boy who shoots me. Shoots me with his (new) toilet brush machine gun. Victorious, he turns into a goose AND a robot. I perceive this because he puts down his weapon and says "HONK" and "I am a robot." He jumps. Honks. Runs away. Comes back. Repeat. I want to be friends. Yet he does not understand my quacking. I am FLUENT in Preschooler, dummy.

Sigh.

Little boy skips to the back of the salon. Opens the door. His aunt is changing. They both scream. She hates the dress she's trying on. She screams again. Little boy screams again. Everybody laughs. Little boy cries. Then they disappear, off to lunch, never to be seen again.

Until perhaps the fall.

emma

Technicolor Phase - Owl City

Long, long day. Slept only 3 hours last night. Orientation for prospective new students left me overwhelmed, tired, and sunburned. My physical reaction to the weather isn't as dramatic as my last visit, but I do have more endurance than at home. Foggy and spacing out during the speakers. USD is a terrific school. We'll see if it's in the cards. Will meet with disability services on Monday.

It really comes down to how I'm feeling and whether I can bounce back. One day at a time! :-)

research,
et

Happy - Leona Lewis [SD 1]

We made it to San Diego last night. It's sunny and 70. Sleepy and sore but looking forward to getting out in the sun.

To the woman next to us on the plane, my apologies. I didn't mean to stare. Your 5-inch heels were unbelievable. You walk in those? Through an airport?! And keep them on for a four-hour flight? Brave or insane, I can't tell.

More later!

java jive,
emma

Spinning Wheel - Blood, Sweat, & Tears

Sore and exhausted, but happy with yesterday's workout.

My blood is cold and unsettled. My mom and I leave tomorrow for San Diego, and I don't quite know how to feel about it. Open mind, right? Trying to look at the trip as a vacation. No pressure about school, just exploring the options. Health above all.

"Your wrists look like a baby's."
"Wait, don't babies have fat wrists?"
[thinks] "Your wrists look like Jimmy's when he was four."
"Ah. Well put."

Please pray for safe travels!

peace,
emma

But Anyway - Blues Traveler

Making a conscious effort to eat more.

[On TV, a trailer for a famous film.]
"Wait, what movie is this?"
"I dunno. One of those fighting ones?"

et

How He Loves - David Crowder

Busy day! Church; family; it's raining now. I'm tired and foggy but thankful for today.

"Oh! Emma, you'd be interested to hear this: Did you know that middle children are 158% more likely to join a gang?"
"...well I guess that explains it."

Family gatherings. You can't make this stuff up.

et

Dr. Grubb's Office

Today: University of Toledo Health Center, Division of Cardiology, Autonomic Disorders Clinic
For: Beverly Karabin, PhD, RN, CNP
Time: 1.5 hours
Result: Good stuff, vague stuff, feeling really tired.


In the waiting room where my sister plays 10 games of solitaire, and stares curiously at an overweight stranger's t-shirt. "I ♥ COWS", a giant cheeseburger on the back. She sips from an extra-large McDonalds cup. Seriously? You're in the office for cardiology, steps away from the emergency unit. It's not my place to judge, ever. But I'm keeping an eye on this food revolution Jamie Oliver's got going.

The doctor is understanding and knowledgeable. Presented some detailed (albeit limited) studies and data. She reads through my various work-ups, talks meds, school, San Diego, etc. Reinforced (1) POTS will not shorten my life; I will grow out of it; (2) We're doing everything right (tilt-training, salt, etc); (3) We can work with USD's administration to get as much help as we need to make school possible for me. Beverly has spent the last 5 years (and just completed!) her dissertation on *ahem* "College Students with the Hidden Disability of Orthostatic Intolerance." BAM. A personal note from a specialist, oh, AND 328 pages of research... well that's handy.

Getting tired so I'll wrap this up: She's enthusiastic about school, but honest that the road may be bumpy. Respected my past Rx attempts and recommended a stimulant to boost energy; prescribed Wellbutrin (to begin after I get home from SD). Then we'll monitor Celexa and Florinef. Pointed out patients who have gone on to live happy and full lives, and even having natural children. So. Hope. Get through today. Nothing is impossible!

Not sure if the visit itself was worth the drive, but it's cool to be officially on Grubb's patient list. He sees 1500 a year, just with POTS. I'm worn out from sitting up in the car. Gotta rest up. Six days to San Diego!

My sister is cool. My mom is cool. {mufflemufflemuffle) from Project Runway is cool.

love,
emma

Our Time Has Come - James Ingram

Made it to Toledo. Keeping low expectations and an open mind for tomorrow's appointment.

Raleigh wins Pup Of The Month!!

free candy,
et

Uprising - Muse

Some improvement with the weather and swimming. I read 10 whole pages today! Nice brain.

Tomorrow is the one-year anniversary of my POTS diagnosis. I have no concept of how much time has passed. Leaving Thursday to drive with my mom and sister to Toledo, and we'll see Dr. Beverly on Friday morning (Good Friday?! =]) I don't know what she'll say or do, but I know I can take anything.

My brother's going to Japan for six months...in eight hours. Mario Party? I think so.

One year closer to recovery,
emma

Headlines Read Out - We The Kings

Lots of abdominal pain last week; I couldn't stomach anything. Nightmares too. No fun! Doing okay now. Got my tilt-training up to 45 minutes.

Anthony got kicked off Project Runway. (What's with that?) His natural sense of humor will be missed most of all.

You know, I blame Beyonce for everything that go wrong in my life.

It's something about her song...that will make you think, first of all, that you are a size 4; that you can conquer the world, and that, I don't know, you are all-powerful.

Do you think Beyonce has a song for the people who can't find jobs...or the interview you didn't do so well in? Does she do any songs about that?"

Hope you all are doing well and enjoying some sunshine!
et

Invisible Touch - Genesis

The Emma Trevor Institute of Thought and Design midterm grades:

Making fun of Ryan Seacrest - A
Gaining weight - F
Choreography, stage/lighting/costume design - B, C
Applying character analysis; narrative analysis; movement-, scene-, and beat analysis...to the real world of cartoon movies - A
Decorating the Institute - D
Functioning at all - D-
Lina Lamont impression - A FLAT!

Dean's List,
emma

Skylark - Bobby Darin

Yesterday was better. On short notice I got to witness for my mom's clients' signing. Woot. I am over 18 and can write my name! I was wiped out after from sitting up, but it was fun. I miss the world.

Tilt-training: 30 min. Tired. Getting back to the heavy-salt diet. "We are noodle folk. Broth runs through our veins."

ramen,
emma

Africa - Straight No Chaser

Tilt-training: 26 minutes. Feet hurt.

Balto is awesome. Sled dogs, two polar bears, and a Russian goose named Uncle Boris... sounds like a cure to me.

[swoon] "He's positively...magnesium!" haha.

Started magnesium supplements. Go!

et

We Are Connected - Amy Walker

Tilt-training: 20 minutes. Feeling: Pain, foggy.

Truth: I enjoyed The Simpsons Movie.

Further truth: Tomorrow it is likely I will forget having seen it, believing that the music and lyrics to "Spider-Pig" is my own original work. Apologies for recent events regarding "What's Love Got To Do With It" and, yet again, the theme from "Jurassic Park."

You think I'm joking. No, no.

ay karumba,
emma

P.S. - Health care reform bill passes in the House! :-)

Fearless - Colbie Caillat

Benign: cool.

Snow: not cool.

Tilt-training: 11 minutes. Dizzy and awful vision.

et

Something Beautiful - Need to Breathe

Had the biopsy (just a precaution). Recovering. It didn't hurt much, just extra tired. Doc says he's certain it's nothing to worry about.

Will visit San Diego again next month. Yay! Gonna talk to all the who's-who about special housing accommodations. Yeah, that's right. I'm special.

Thinking of all my Snowballers this weekend. [your favorite catchphrase here!]

31 flavors,
et

Accepted!

It is my privilege to inform you...I have been accepted into the University of San Diego freshman class of 2014!

Details are for later! Happy day! God is good!

love!
emma

Heal Over - KT Tunstall

My ear's giving me trouble. Terribly fatigued. Just pushing through. There's a light at the end of this tunnel!

Reviews:

The Proposal (movie) - stupid

Food Inc. - new favorite documentary! A must-see.

Project Runway (reality show) - Best-structured contest show ever. So much focus on the creation instead of the judging. Seth Aaron for the win.

(500) days of Summer (movie) - melancholy yet charming.

danse,
emma

Beauty In The World - Macy Gray

Got an appt to see Beverly...in 3 weeks! [Note: we have been on Grubb's waiting list for 6 months.] Looking forward to new treatment ideas. Anybody tried erythropoietin (EPO) injections?

Eyes are weak. Later!

et

Far Far - Yael Naim

Bad couple of days. Nor reacting well to this fog. Nightmares, exhausted, confused. Breathing is more difficult.

It's not over til the fat lady sings. I've lost 25 pounds.

It ain't over, folks. It sho' ain't over.

et

Where Are You Going - Dave Matthews Band

Tests back.

Lyme, negative. Vitamin D, Thiamin, Iron levels, etc, normal. Ultrasound next week, no biggie. Best news is that we're officially on Beverly's calendar for next month! Ohio, kids. This office is the center of the POTS world. My 20th doctor and 6th state. We're gonna work this out.

In the meantime, happy to have above-freezing temperatures and sunshine!

love and baked goods,
emma

Think of You - A Fine Frenzy

Today: Saw my cardio electrophysiologist. Frustrated with my case. Recommends a visit to Dr. Grubb's office in Ohio. Hoping to reach Beverly Karabin, RN.

Running some numbers, took 5 vials of blood. Not so bad. New nurses, particularly male ones, are so funny.

"So. We're gonna like, draw some blood now."
"Okay."
"Coooool. Yeah. Are you nervous?"
"Nah. I'm a pro [at getting blood taken]."
"Oh." [Uncomfortable. Obviously he is NOT a pro at taking blood.]

"Are you doing okay?"
"Yeah."
"Cool. That's...cool."

"So you're not like, light-headed or anything, like?"
"Nope."
"Cool. And you're like, good to go, cool?"
"Okay, thanks."
"Alriiite. Cool."

Will write again when I get the results. Poor new guy. I shouldn't make fun. It's just too, like, easy.

Arrested Development is hysterical!

anyong,
emma

Cue the Sun - Daphne Loves Derby

Not doing well. Blood work in a few days.

Hope this Weakened Weekend goes by fast.

et

Little Birds - Eric Whitacre, BYU Choir

Yesterday was good. Today was bad. Treatment was okay. It's snowing. Stop that.

Rediscovering dissonant polyphony,
et

On Children - Sweet Honey in the Rock

"You can house their bodies
but not their souls.
For their souls dwell in a place of tomorrow,
which you cannot visit,
not even in your dreams."

Brain fog. Um. Tired. Found my "I ♥ CHOIR" pencil! Happy.

emma

Brand New Day - Joshua Radin

Friday's treatment, new points. Terribly moody but I slept better last night. Doing halfway decent. Snowstorm's coming in now. Tomorrow might be rough.

Coraline is the scariest movie ever. Shudder.

For my sister, by request :)
"These are the headdresses of the queens that have gone before us. This is the blood of our people, the moon women from which we gain our strength to rule all worlds. We are the flames of the fires, the whirling of the winds, waters of the rains and the rocks and stones. I declare we are the mighty Ya-Ya priestesses. Let no man put us under. Now our blood flows through each other as it should. Loyal forever. YA-YA!"

I do decla-yah,
et

Run To You - The Rocket Summer

Yesterday I had the opportunity to speak at my high school. An area mom with two POTS-suffering children gave the majority of the presentation, educating the nurses, guidance counselors, and social workers about POTS. There are at least eight 8th-12th graders in the district who have already been diagnosed.

I was feeling totally miserable and wasn't sure I'd be able to make it at all, but it was good to be there. The faculty are genuinely concerned for the well-being of the students. I forget how strong a network Stevenson can be.

In terms of my "speaking," it was more along the lines of me talking for a few sentences, getting side-tracked, forgetting what my point was in the first place, and asking for more questions. Mom and Jodi jumped in, which was great. I felt somewhat helpless to suggest how a POTS patient should be treated academically. Teachers can give extensions; schedules can be adjusted, sure. But at what point does a person, CAN a person, choose to leave to focus on their health?

Chronic illness is not my cup of tea. Unless such tea will be thrown into Boston medical schools for researchers and doctors to study and solve. Yeah. Take that, you crumpet-and-doily crowd. Wheah ah de tea POTS?

Anyway, it went well. Exhausted since, but what else is new. Acupuncturist is insisting on a few more visits.

cheers,
emma

I'll Rise - Ben Harper

aauuuggggghhhhhh.

I'm looking for a dealership or pawn shop or black market or SOMETHING. Where can I trade in this miserable failure of a body? Please, something. Memory's bad, vision's bad, heart's bad. Bad, do you hear me? BAD. WAY BAD.

Henry David Thoreau had Walden Pond. I, on the other hand, have a couch. Reflecting on universal themes depicted in reality TV and detergent commercials. Sigh. My wilderness: life as a teenage shut-in.

But seriously, black market? Anyone?

peace,
emma

The Pomegranate Seed - Cosy Sheridan

Very weak, tired, cloudy. Even after treatment yesterday, I only slept 5 hours last night. So not enough! Acupuncture might be on its way out for me.

VICKS TISSUES! wow, this day just got a whole lot better :-)

et

P.S. - The Washington Post reports a medical mystery which turns out to be POTS: http://www.washingtonpost.com/wp-dyn/content/article/2010/02/12/AR2010021204444.html

What Is Love - Night at the Roxbury

This week I'd only been getting 3-4 hours of sleep a night. More fatigue, tremors, the works. Then Dr. Choe used some new points...and I slept 8 hours last night! Yeah! But he's upfront that if I'm not seeing improvement in another week, I should stop acupuncture. Still feeling tired, taking it easy. One day at a time.

Julia's show was outstanding. So grateful I got to see it! :)

bravisimo,
emma

Dela - The Beautiful Girls

We're doing a few "stronger stimulation" points in acupuncture. Hurt my hand. Keeping an open mind. Things will get better.

Too much snow. Not enough circulation. Very cold. Sleep would be nice. Take the pain away please.

These colored pencils are a disgrace to colored pencils everywhere. I shall put them in a trash can and set it on fire.

endurance,
emma

I Understand - Smokie Norful

Improvement? Some, for sure. Been able to read more easily. Takes a little longer to get physically fatigued. But I think I'm still going through an emotional purge. Working through all the anger and grief and uncertainty. It's a process, but a much-needed one! Hoping the highs and lows will flatten out this week.

Looking forward to more acupuncture today!

et

Ne Me Quitte Pas - Regina Spektor

Had a short burst of energy today, yay. Have some bruising. Still moody. The doctor says that it's a normal and positive sign that I'm reacting strongly to the treatments. It'll take some time for my mind/body/spirit to get closer to an equilibrium. Day by day.

Thanks to my family for giving me space. Sorry I resemble a velociraptor.

peace,
emma

Hang On Little Tomato - Pink Martini

I don't know about my physical symptoms, but I think acupuncture is helping me mentally and emotionally. The treatments are making me cranky at times, but I'm more aware of my fears, I think. Now I wish I knew what to do about them! We're doing more points in acupuncture tomorrow. Hope session #4 goes well.

Didn't have the energy for choir auditions. Sad. But who knows if I'll even get into the school. One step at a time. We'll know in...6 weeks maybe?

Must: eat more. sleep better.

Miss America didn't make the crying face. :'(

emma

Carry You - Dispatch

Acupuncture itself was fine. Relaxing, and the needles are almost microscopic. No porcupine quills! It'll take about 6 visits to see if there’s a difference. It is no fun seeing new doctors though. Lots of paperwork, and then "Reason for Visit" ... in two lines or less. I think I wrote "I'm screwed up." Pff. Whatever gets the point across.

Here at the Institute, dreams do come true. Precisely every 50 minutes I observe two new driving students maneuver a car for the first time. Yep. The DRIVER EDUCATION hot-rod scoots around my street at 5 miles an hour...sixteen times today. I drove that car once. Sigh. So many near-death experiences. If your partner plays racing video games all day AND doesn't speak English, well, best to you.

Tomorrow I may stand in my front yard, excuse me, "The East Quad." New drivers need to learn to know how to cope with surprising or stressful situations behind the wheel. "Your lights! Your light-brights are on! Rainbow Brite! My Little Pony!" "What is this awful leak? I'll just light a match..." Or maybe I'll put a stop sign on my mailbox. Or a No U-Turn in the middle of the cul de sac. Or randomly place a few orange cones or blinking yellow lights. Speed Minimum 55. No parking. No stopping. Time to switch drivers, just keep rolling. Watch your feet.

I wish I could drive.

et

Keep Breathing - Ingrid Michaelson

Today I thought I saw two deer outside. It was just a dog. A really, really ugly dog.

Fatigue, nausea, pain. It feels like I've been punched in the stomach.

Acupuncture tomorrow!

pin cushions,
emma

The Institute

Pain. I think my internal organs are conspiring against me. All of them. Ow.

I will take this opportunity to officially announce the founding of The Emma Trevor Institute of Thought and Design.

The Institute is known for its awe-inspiring scenery [cassette tapes set up like dominoes], its strongly-enforced dress code [semi-pajamas], and its unheard-of 1:1 student:teacher ratio [both me]. I mean, that should go without saying. We're the most selective university in the world. Our staff features yours truly, Professor Emeritus of Trevorology: D.E.T. (Yes, I have been awarded a doctorate because I have been studying this species for, like, ever.)

The Founders are still working on a logo and mascot. Hm. Inspiration could strike at any -- Look! A dead bug!

Time to teach another challenging course: Overly Anticipating The Return of "The Office." I only award A's to students whose term papers include a stapler molded in Jell-0.

Best,
Prof. T-revs

Faculty Bio:
Books and articles include, Good Food Ought To Be Hidden (1999); "Small Things Forgotten: Unearthing 10,000 Beanie Babies" (2002); and who could forget the award-winning "Mastering Sarcasm: YEAH RIGHT" (2005).

[Source: My Crud-entials, 2010]

The Forecast - Jason Mraz

Four-year-old girl on the plane: "Run run run, as fast as you can. You can't catch me I'm the-- hehehe! You can't catch me I'm the-- hehehe! The-- eee hehehehe! Ginger man bread! Cookie! AH HAHAHA!"

haha. I'm back. Florida didn't work out, but it was worth a shot. Thirty percent chance of acupuncture, coming up next.

fun stuff,
et

Marching Bands of Manhattan - Death Cab For Cutie

Very tired. My heart hurts. Not able to do much. However I have found a nice rotation between PBS Kids, figure skating, and C-SPAN.

I'm flying home on Monday!

et

Frown

A beautiful day here, sunny and 80. Thought these conditions would be ideal, but it was a long, rough day. So disconnected cognitively. Heart palpitations, crazy fatigue, headaches, etc. Bed-bound. Had a couple better hours in the evening. Not a lot of rhyme or reason.

Trying to cope with my limitations. I can pray for Haiti. It's enough.

emma

Tra-la-la

Yesterday: pretty good. Today: not so much. Chest pain, jerking/shaking, and fatigue. Unpredictable! Gr!

And just for kicks: http://www.youtube.com/watch?v=pVo-S9ns2_A

like...cool

et

Poli-tics

Up-and-down today. My brain's doing better overall, but struggling with ticks and muscle twitching. Taking it easy.

Pleased to meet a few neighbors: Bry, CeCe, and Princess. Unique for the area, we play neither golf nor tennis. I think I'll fit in just fine... provided I bring enough doggie treats to go around. :)

cable news...it's sensational!!!!

oh the hype,
et

Extending Stay

It's frustrating and scary and cold. Long days. Neuro/cognitive problems, fatigue, vision weakness... who knows how much is due to the freezing cold? I was an absolute mess at home. Found a decent living situation here, but it's not worth a dime if I'm not FEELING better.

Consensus: Need more time to make a decision. I'll stay here with my grandparents through the week. It's supposed to be sunny and warmer, which will be a more accurate trial for my health than this crazy, fluky weather. Then we will reevaluate whether to (a) find more independent residence in FL; (b) return to IL and stick it out; (c) continue looking for places in San Diego; (d) meh. There's always Narnia.

Mom is flying back tomorrow. Lots to settle still.

So the goals this week: Monitor my health. Take care of myself. Salt, water, meds, sun, exercise some. No guilt, no worries. Things will turn out.

True story:

[Waiting to be seated at a restaurant. Me: weak and fading fast. Standing room only. Five minutes. Desperately snagged a place to sit.]
Elderly woman: Excuse me, dear, I have a back problem. [We make room. She sits, chuckles.] Aw, you girls are too young to have problems.
[Painful, painful glances.]
Me: You'd be surprised.

be kind out there,
emma

Hello, Florida

Low temps and snowy weather in Chicago have been unbearable for me. Extreme fatigue and confusion. Our flight was only delayed by a few hours. It's unseasonably cool in Fort Myers, but we'll take it.

Drove around. Saw apartments. The sun felt great this morning. There's a big storm coming in tomorrow, and it's really affecting me. [Notice how there's always a storm. Way to go, metaphors.]

There are SO many components to think through. My future here or anywhere? Only time will tell.

emma

Title Wave...wave!

On Thursday, my mom and I are flying to Florida. We get to visit my grandparents. Plus I need to escape the winter here. I hope I will feel better. Perhaps I will find some housing nearby and end up staying for a while.

[Non-committal statements]

Sorry if my blogging becomes less detailed and less frequent. I need to pack and think and prepare my repertoire for auditions due in, oh, three weeks.

You are really cool and I will do my very best to get back to emails...someday!

Happy New Year!
emma