Stronger On The Other Side

2012 Begins

2012-01-01T23:43:00.000-06:00

Hello out there! It's been so long. How have you been? You look great! And your hair! Well, yeah, it could really use a trim. I happen to have a couple of sharpened spoons in my purse, it'd take me two seconds to snip off that awkward tuft. No, no, other side of your head, dear. What? No! I mean, you can hardly tell. One kind of overshadows the other. It's not so bad. Just ask the nice lady for your money back. What do you mean, "not much of a lady?" You what?

And so we resume our blogging schedule, A gift for you, dear friends: my witty yet poetic perspective on life; my fanciful feast of prose; my great, noble, glorious, and of course humble, humble words-- all posted so you, gentle readers, may not act out of despair or desperation, say, by soliciting a 12-year-old girl to cut your hair. Lemonade stand aside, do you really want to spend your investment dollars on her? No, the pink plastic barrettes do not make it look less foofy. Friend, your hair is important to me. You deserve better.

Anyway, I'm back! Things are looking up overall. I'm gaining weight (2 pounds!), still driving, working out, and keeping busy. I'm starting classes at CLC in a couple weeks-- very excited for my two classes: Lifespan Development and Community Health. Planning to continue volunteering with Snowball and ESL this semester. Did I mention my ESL student, Youngsim, had her baby this week? A healthy little girl. Aw, I feel like a proud auntie.

Looking for some means of steady income... most likely more chores, babysitting, and ESL tutoring. My only frustration right now is that I have to sleep 12 hours a day. But that's so minor compared to all the pain and limitation from before. I'm amazed about being able to function perfectly in the rain and drive in snow! Beautiful little things that are so big to me and my family!

The fam's still going through some "challenges." But we're all optimistic about turning things around in 2012. Tomorrow the Trevor Tribe will climb to Mount Wannahockaloogie and dramatically shoot our New Year resolutions through the Ring of Fire!

My first goal: Church hop weekly. More on that later.

most sincere wishes for a bright new year,
emma

Holy cow

2011-11-22T22:23:00.000-06:00

Just realized I haven't written in a month. I am doing amazing. I'm driving. I'm doing the babysitting/nanny thing. I'm tutoring. I'm getting active in my church. I'm working out. I'm running errands! All by myself! Coming and going as I please! I am so proud of my brain and my body and God's spirit in me. What am I going to do with myself. Life is so full of possibility. I have much to be thankful for. Hope you are celebrating your blessings as well.

peace,
emma

POTS News Video

2011-10-26T20:26:00.002-05:00

ABC 7 Chicago - POTS in teen girls [11/08]

Crazy coincidences: 1) This aired the same week I had to leave college because of POTS. 2) I know that girl's mom! And not through POTS! Small, small world.

I can't believe I hadn't seen this video until now. Thanks to JW and HC!

emma

Thoughts

2011-10-24T21:31:00.000-05:00

Article on POTS featured in the New York Times...and a POTSy's response.

I'm doing great. Birthday joy. Took a couple days this weekend to nurse a cold, and now I'm right as rain. Driving all by myself. Getting stuff done. Making plans. Enjoying the beautiful weather. It all feels a little unreal.

Today I ran into Alternate Universe Emma. She never crosses my mind anymore. I used to keep a mental map of where I'd be if I were her. But I got rid of that map last year-- a breakthrough to say the least. I'm happy with where I'm at, and I'm seeing more and more a sense of purpose in my being sick and all the struggles that went/go along with it. Alternate Universe Emma doesn't exist. I thought I got rid of her.

But when you catch up with someone for the first time in four years, you see through their eyes that old version of yourself. And you see the college senior that they've become, you hear the language you might've been using yourself. Internship. Student teaching. Studied abroad. Graduation. GRE. Certification. Job offer. Starting salary. Dating. Master's. Engaged. Moving.

I think it's the time warp that gets me most. Yes, chronologically, I understand I am twenty-one. But my 21 is still like...18. And my 18-year-old self predicted my 21-year-old self would be an accomplished musician and scholar and whatever else.

And I'm not. And I'm okay with it. I'm genuinely content, fulfilled even, where I am today. I love ESL. I love Snowball. I love church-hopping. I'm not a college student. I'm humbled. I'm okay.

But Alternate Universe Emma is not okay with it. She would've wanted the GPA, the degree, the recommendation to direct a prestigious youth choir. She had a four-year plan. She had a four-year plan, and it failed! She failed!

Maybe I'm rambling.

Maybe I still have a little to grieve.

Maybe it's too easy to try and compare myself to my peers, to my old expectations of myself.

Hm. Food for thought.

carrot cake,
emma

Hey there.

2011-10-14T19:37:00.000-05:00

Things are really looking up. Went shopping. Three hours. No pain. No fatigue. WHAT?! In the past week I've started driving (short distances/daytime) and it's SO exciting just to go run an errand. Progress, people! Freedom, people!

I'm trying to not get too far ahead of myself; today I had to take a day off and rest up. Managing time and energy are hugely important. It'd be way too easy for me to fall back into over-excited and over-scheduled mode.

People at home are going through some rough stuff. I truly admire the kindness of our friends, family, and neighbors. Thank you, whoever's reading this, for just practicing kindness in your day-to-day life.

If I were to make a mix tape for you today, it would include:
"Everday People" performed by Bar Scott

peace,
emma

I'm doing... amazing.

2011-10-02T15:36:00.000-05:00

I have had the most preposterously excellent week. In the last 48 hours, friends have seen me suddenly transform into an able-bodied person. It's ridiculous. I don't understand it. Even with all the rain! It's crazy and wonderful and I love it. I LOVE IT!!

What's on my mind:

I'm buying fair trade chocolate for our trick-or-treaters!
I love fair trade clothes. They have a soul. I'm trying out several online retailers... will let you know which one's the best. :-)
Here's another reason to boycott American Apparel.
Love church. Hate "Money Sunday." There are lots of ways to give. bah.
Snowball has begun and I'm so excited!

hugs and sparkly things,
emma

Apples

2011-09-16T17:27:00.000-05:00

I heart my ESL students. I think they'd heart me more if I didn't have a runny nose. Gonna be resting up this weekend... excited to meet a real-live music therapist on Monday.

Currently reading: Pretty much any catalog that describes autumn scents or the wonder of flannel sheets.

Adding to the grocery list: apple cider

Sunday Best Season Finale

2011-09-11T22:00:00.000-05:00

I'm in the process of learning -- slowly, with much difficulty-- how to exist in the midst of pain and suffering without taking it on.

Pandora is my music therapist. Currently listening to: The Hold Steady

Currently reading: Sing You Home by Jodi Picoult; a biography of St. Patrick of Ireland

Labor Day

2011-09-04T12:24:00.000-05:00

I've had a great week! I think I've left my house every day for the past 10 days in a row. Woo-hoo! I can make appointments and keep them. Oh, it feels good to say that. My sister was kind enough to pass along her cold to me, though, so I better knock on wood if I want to keep my streak going.

ESL is awesome. There are about 13 students in the class, age 23-65? and from three continents. I thought I'd be only observing, but now I am an "assistant"... I got to write on the board and everything! I love language. I love students! They work so hard to understand and be understood. The hardest thing for me is idioms, when to explain them or avoid them. Our teacher said, "You're keeping me on my toes." That led to a whole can of worms. Ha, I'm full of stories now. I want to employ some vocal warm-ups in the class at some point. It could really help develop the students' sh-, ch-, th-, f-, v-, l-, and r- sounds.

Hehe. I am a dork. :-)

I'm so thankful for everyone who's been giving my family oodles of support. Have a great long weekend!

Currently reading: Girl, Interrupted by Susanna Kaysen; a book of quotes by African-Amercians

Recommended movie: A Family Thing (James Earl Jones, I'll watch that guy any time.)

peace,
emma

Lightheartedness

2011-08-27T20:37:00.000-05:00

Take a break from the trauma drama. Hope this leaves you, too, in stitches.

ESL Starts

2011-08-24T19:18:00.000-05:00

My family's been going through some tough stuff. I'm doing okay. Coping. Wish I were an able-bodied person.

This week I'm excited to begin a new adventure into the world of ESL (English as a Second Language). Twice a week I'll be observing an ESL class, just for fun, to learn how people learn. Education and inter-cultural communication are big interests of mine, and I expect the community will be an encouraging place for me.

Currently reading: Plain Truth by Jodi Picoult

Choreographing: World on Fire - Sarah McLachlan

Struggling with: short-term memory loss

peace,
emma

Info on POTS Doc

2011-08-15T21:01:00.000-05:00

Hello POTSy friends. Just got an email from a happy patient. I haven't heard of or seen this doctor myself but wanted to share her good news. Here are highlights from the email... hope it helps!

"Luckily, I pushed on and saw this new guy. He is interested in POTS, and very well read in everything POTS- the meds, the side effects, the testing, the new medicine that Cleveland clinic is using, POTS during pregnancy, POTS syncope, literally, the guy educated himself in EVERYTHING when it came to POTS.

"Seriously, this guy might be the best doctor I have ever seen, POTS or any other kind.

"That all probably sounds like a sales pitch! I swear, I don't work for the guy...lol. Anyway. His name is Barry Laskoe, he is an EP, a DO, and he is out of Advocate Lutheran. I see him in Park Ridge or Glenview and he is in Buffalo Grove, too."

The First Step of a School Bus

2011-08-14T16:52:00.000-05:00

Weight: 111

Currently Reading: The Yada Yada Prayer Group by Neta Jackson

Currently Watching: (Documentary Series) The Up Series - Seven Up, 7 Plus Seven, 21 Up, etc.

Feeling: crummy

Bidders Row

2011-08-12T12:56:00.000-05:00

Rough week. Feeling numb. Don't feel like talking. Just getting by, day by day.

Kennel 84

2011-08-07T13:54:00.001-05:00

I haven't had reliable internet access lately, hence the late update. I'm doing ok. Lots of family craziness. I love my little cousin Rhiannon! My thinking.is kinda in-and-out, mushy, numb. Sometimes I'm doing great, and sometimes I get tired and my eyes are sensitive to light. Like right now, I need to get off the computer. Later!

Currently reading: The Five People You Meet In Heaven by Mitch Albom

Documentary of the Week: For the Bible Tells Me So - The "church's" response to homosexuality. [Hate crimes are hate crimes. WWJD! Sheesh!)

Lourdes

2011-07-26T22:10:00.000-05:00

Getting through the physical, mental, and emotional turmoil of transitioning off meds. It hurts. I cry. My fuse is very short. Sometimes my vision gets swimmy and everything is overwhelming. I'm living very much in the spirit of one day at a time- keeping my goals, plans, and expectations at a minimum. I have a good couple hours every so often, but the lows are low. Breathing.

Currently reading: Keeping Faith by Jodi Picoult (love this so far)

Recommend: (film) Tuesdays with Morrie. (Now I have to read the book too!)

et

47 Sugar Lane, Toronto

2011-07-20T18:35:00.000-05:00

Very fatigued. Been lying down all day. Missing church tonight. Frustrating. Things are going to get better soon! And soon I will not be as cranky as I am right now. This is just temporary, self. Don't forget.

I know it's the weekend of my sister's musical when bobby pins litter the hallway and hairspray suffocates the bathroom. Break a leg!

Currently reading: Nineteen Minutes by Jodi Picoult

Looking forward to many discussions about: (movie) The Adjustment Bureau

et

Good-bye, Midodrine

2011-07-17T18:53:00.000-05:00

It is day 3 of (wait for it...) 0mg Midodrine. Woo! I'm really proud of the progression I'm on. Getting off the meds is tough stuff, as always. I'm feeling unsettled, scratching my head and nose for no reason. I occasionally lose feeling in my feet, and my extremities have returned to their color-changing ways. That's right, you didn't imagine it. My knees to ankles resemble your favorite gradient dip-dye beach towel. You know the one, right? Apricot, pink, red, maroon?

I'm reading melodramatic books, hanging out with my dog, sleeping 10+ hours a day. Couple weeks of transition and I'll be solid.

At least one can hope.

peace,
emma

Where Am I?

2011-07-09T15:02:00.000-05:00

No energy. Very cranky. Not me. This is not me! Stupid drugs. I knew I always hated you.

My personality may return in another week. Grf. Watching sad movies until then.

et

Hey. It's July.

2011-07-07T14:48:00.000-05:00

So much to catch up on. Bullet points! Pow!

The seminar went well. It was a huge risk for me, physically, to try to be active and attentive for 3-4 days. The schedule allowed 7 hours for sleep... when I usually need eleven! It was challenging to the point of almost impossible, and I was in bed for 3 days after, but it was worth it. I got outside my comfort zone. I met strangers from across the US and Canada and bonded with several individuals. I witnessed others' breakthroughs and affirmed my own dreams. It was a good experience. But I am going to be in a better place before I do something like that again. Oh, the bruises!

I'm decreasing the Midodrine dosage further. Yay! From 20 to 10mg/day. It's Day 7. Things are going pretty well overall. I've kind of been through this before, so I know to keep an eye out for mood swings. My family has learned to heed my warning. Sometimes I'm tired or anxious or sensitive to sound. It's not terrible, but it's not fun. Makes me want to get back into a healthy lifestyle and practice preventive health.

Swimming/stretching, 25-30 min. Gotta get back into yoga soon.
Weight: 109; 110; 110
Appetite: much improved! Dessert, please!

Recommended films: Shawshank Redemption (ah! music therapy!)
Currently reading: Crazy Love by Francis Chan

love,
emma

Summer Solstice

2011-06-21T13:31:00.000-05:00

I am officially a church hopper! I was so excited to be able to visit two new (to me) churches last week. Presently I am house-sitting and cat-sitting. Attending a seminar this weekend (NOT on the topic of house/cat-sitting, silly). Excited to meet people and hear speakers, but downright scared for the long days. Hoping it'll be okay!

Sleepy. Easily fatigued. Upset stomach. Slow circulation.
Weight: 112
"Swam" (stretched) - 25 min

Need to get in the water more frequently. It's so helpful for my cold extremities, not to mention the exercise benefits.

catch ya later!
emma

2011-06-12T22:30:00.000-05:00

Humidity Begins

2011-06-08T12:04:00.000-05:00

Weight: 111

Sleeping: 10+ hrs/day

Gatorade: As much as I can take. It's HOT out!

Mental/Emotional Health: Stable. I had terrible mood swings for a few days last week, sinking really low and not feeling like myself. But I think that effect of decreasing a dosage has passed.

The bottoms of my feet are: purple

Currently Reading: A Million Little Pieces by James Frey; Savage Inequalities by Jonathan Kozol; Quitter by Jon Acuff

I'm really excited for: So You Think You Can Dance - Vegas Week; Pathways.

smile,
emma

Day 6 of Cutting Back Midodrine Dosage

2011-05-26T22:54:00.000-05:00

I'm totally off the Florinef. I think my body's doing okay with that; I've noticed fewer sparkle episodes upon standing.

Previously I'd been taking 30mg of Midodrine daily, in 10 mg pills. One at about 8 am, noon, and 4pm. This week (per Dr. Rogers's directions) I stopped taking the 4pm dose. Just going through adjustments... some easier than others. Digestion's getting better, taking risks in small bites. I'm sleepy more and sleeping more, sometimes 12 hours a day. Feeling kinda foggy-minded, kinda slow, kinda sad, but all in perspective. I've been through drug changes before, and I can separate my thoughts from me. My brain's still strong, and I love that-- even read a 400-page novel in 5 days!

This week - 2 pool workouts, 25 minutes ea. Sore the next day. Need to stretch more.

I look like I weigh about 105 lbs. This week I checked in at 114 and 111 lbs. (Disclaimer on all weight-related entries: Weight is neither a complete nor an accurate indicator of health. Within a given month, it is normal for a person's weight to fluctuate, especially for menstruating women. It is my goal to gain weight, and to do so healthfully, mindfully. I am unique, as is everyone. I could say a lot more about unsafe eating and/or exercise habits but will save that for another time.)

Otherwise, keeping up somewhat socially. Starting a regular multi-vitamin tomorrow. Avoiding some things, like cleaning my room. It's beyond wreckognition! Better get on that...after a long snooze.

peace,
emma

A Week Off Florinef

2011-05-07T19:19:00.000-05:00

It's been up-and-down. My veins are more visible. Been dizzy, achy, moody. I didn't go into the office this week; hoping to feel well enough to return soon. The biggest change I've noticed for myself is having to give myself a few seconds to adjust between lying down/sitting/standing. If I jump up too quickly, suddenly a disco floor sparkles wildly around me and I have to lean on something.

The exercise portion of my treatment is, eh, delayed. I'm stretching some here and there. Using light weights during a commercial break. Taking care of one thing at a time, and right now it's rest. I'm sleeping about 10 hours a night instead of eight. (I have no idea if any of this is typical, just reporting my findings.) Digestive issues make me unhappy. I just want to eat a chocolate-chip-brownie-walnut-waffle sundae! Dream on, sugar plum. At present my diet consists of rice... and like 5 other foods that don't make me nauseous.

Brain tired from computer. Later days!
emma

Downriver Cardiology

2011-04-30T23:03:00.000-05:00

My appointment with Dr. Felix Rogers in Trenton, Michigan went well! It was worth the trip. He may be the best doctor I've seen for POTS. His "interview" was thorough and his manner radiates humility and encouragement- I'd recommend Dr. Rogers in an instant. He truly puts his patients first. His philosophy centers on getting off the meds and strengthening the heart through exercise. I've started the first already; today is my first day in two years that I haven't taken Florinef. Dr. Rogers has instructed me to continue to get plenty of salt in my diet, but taking a pill to help it (especially after so long) is unnecessary. Avoiding side effects is my favorite!

Dr. Rogers is so knowledgeable about POTS. Check out his website.

I love live theatre and music. That world is so tempting. Hope I don't turn into an arts bum someday, hanging around Will Call, asking for free tickets. :)

Physically I'm doing good-not-great. Sunny days help me out a lot. Tell them to stick around!

emma

Frostbite Falls

2011-04-23T21:00:00.000-05:00

Rough week. Rain, snow, wind, more rain. I've been trudging through, cursing the brain fog when it rears its ugly head. Eyes squinty, mind spacey, I can't let myself think about anything when I'm fighting it. It's like a migraine. So frustrating, the pain. But easier to endure, I must say, knowing that my body can somehow remember how to be healthy and productive.

Tomorrow my mom and I depart to Michigan to see a new POTS doctor on Monday. Road trip!

Happy Easter and Earth Day,
et

Pier 1

2011-04-17T16:38:00.000-05:00

Four bad days. Stormy. Very fatigued. Missed a trip to visit with friends at college. Bummed me out.

I'm feeling pulled in different directions. What I have to do versus what I want to do, and when/how/why I'm doing it; finding time for myself/hobbies/family/friends/work. It's so easy to get overscheduled when you have the interest and energy and basic funding to do whatever you want. I guess it's that whole life balance equation, whether it exists. We're all looking for it, aren't we? Balance. Mm. That sounds nice.

Tomorrow tax season is officially over! Squee.
et

Mercury

2011-04-09T23:05:00.000-05:00

I'm doing great. Totally excellent. I haven't written in two weeks, that's how excellent. :) I'm working as a file clerk for the firm, hanging out with friends, reading-- I could go on! I feel like I'm making huge strides towards what now look like realistic goals: gaining weight and building muscle, being able to drive, getting back to school/work and a normal life, getting off medications. It's still a day at a time, don't get me wrong. But my mind and body have proven so resilient after working three days this week. I'm so excited! Still keeping an eye on my eating and weight. I'm looking forward to seeing the Michigan doctor in a couple weeks.

later days!
emma

The Cherry Tree

2011-03-28T16:05:00.000-05:00

Endoscopy results: No infection. No Celiac. Keep doing what we've been doing.

Shrug. Fine. Thank you.

Frustrated.

Chicago Children's Museum

2011-03-24T15:59:00.000-05:00

Snowball (high school retreat) was excellent. There were a couple instances where I was tired, but I was able to be so active and involved; I'm so proud of myself and how much I've progressed. I love camp. I love meeting new people. I love meaningful discussion and taking steps (and leaps!) out of my comfort zone. I'm so grateful for the entire experience and look forward to more Snowball weekends in the future. Doing well since, only a couple bruises! Keeping busy and social, which is wonderful.

This morning I went in for a planned procedure - an upper endoscopy. Surprisingly enough, my first experience of being on a hospital bed while they roll it down the hallway! "My name's Jenny, I'll be taking you to the procedure room" "Like down the hall?" "Yes." "Jenny, is it crowded?" "No." "Can we go faster?" Wheeeee!

The other nurses were awesome too: Hilda and Bernadette. "Emma, this Bernadette. She the BF. BF! Yo' boyfriend, HA." They gave me Demerol and a saline IV and something else. I remember the oxygen tubing in my nose, but nothing after that. It doesn't hurt too much, just uncomfortable when I hiccup or cough. I've been sleeping and drinking lots of water. Still a little zonked out. We should get results... soonish? I don't know exactly what they're looking for, just blockages in the stomach that could explain my slow digestion and abnormal weight loss.

Yeeaah Snowball!
et

Adler Planetarium

2011-03-17T22:56:00.000-05:00

Today I played with friends, nerf guns, and neighbor kids.
Tomorrow I staff Snowball.
My backyard bathes in moonlight.

praise much?
emma

Apt 309, Apt 613

2011-03-13T21:54:00.000-05:00

I don't know how to say this. I've been so alive in the past four days, it's unbelievable. Physically, logically, it doesn't make any sense. Sleeping is hardly better; eating is definitely not better. Yet I had an amazing weekend. It's crazy! So happy to dance the night away with my family, church friends, and new friends from the firm. Talk about the inexpressible joy of Normal Moments.

Maybe more are on the way, maybe not. Either way- WOOOO!

et

Parking Garages

2011-03-09T19:47:00.000-06:00

Doing well. Prepping for Snowball. Drinking protein shakes. Determined to get more than 5 hours of sleep tonight.

Kildare, Ireland

2011-03-07T20:07:00.000-06:00

TV recommendations:

Secret Millionaire Undercover, a millionaire volunteers beside unsung heroes.
Who Do You Think You Are? Celebrities learn about their ancestral roots.

I'm doing all right, taking care of myself. The diet rec's plus Biotene are helping. I'm struggling muscularly. Deconditioning = bad. Reconditioning = really hard. Planning to get back to my pool workouts soon.

Emotionally, this thing ain't no fun. Last week I had a couple hours every day where I'd just go numb. Like curling up into nothing and trying to escape. I say this a lot, but it's true: I have no sense of how much time has passed. Then I'll get an email: "Registration Information for Fall 2011." Oh my heavens. Is that what year it is? 2011. Many of my friends are graduating this spring. In May. That's in two months. How much is two months. Eight. Eight what? Eight SMTWTFS pill packs.

The sound of my pharmacist's voice is familiar, is comforting. He's the only one who calls me Miss Trevor.

One day I will teach.

I know what it's like to be lonely, to feel invisible, to feel disgracefully visible. Spinning in circles on the treasure map, up to my knees in white-sand-turned-gravel. What? What did I-- I will move on from this, right? The lows are low. But my life holds meaning. My gifts are special. My existence is important.

Small. Keeping strong.
emma

Admirals Club

2011-03-02T22:01:00.001-06:00

The test was easy as pie. It was fun to chat with the technician for a couple hours. I love talking to strangers!

Results: I have mild delayed gastric emptying.

Suggestions: Eat small frequent meals (5-6x/day); avoid greasy and fried foods, high-fiber foods (including most fruits/veggies), and dairy products. I will schedule a EGD (upper endoscopy) for next week.

I'm struggling a lot. I'm weak. Stairs and standing were tough today. It's hard to eat. I'm drinking gallons of fluids to combat "dry mouth" - literally I'm just not producing saliva. Dad got me some Biotene and I'll start using it tomorrow to help ease that symptom. Stomach aches and fatigue too. Yeah. Not pretty.

I'm fighting. And I have to keep fighting it where I'm at. I'd planned and looked forward to going on vacation this weekend, but I'm simply not healthy enough to make it down to Florida. It's upsetting, to me and to everyone. Plenty of tears been shed on my end, that I know. But I have to listen to my body. As we've seen - over and over! - POTS is unpredictable. It doesn't understand calendars or important events or even the fact that I sometimes like to sleep past 5 in the morning! This whole thing is painful and ugly and not fair.

I'm in no condition to travel this week. I didn't (and don't) have a say in that. It's just the way it happened. Timing, you stink. I wish I had a choice. I wish I had control. We're all just rolling with the punches.

I'm gonna get stronger. I will. I will. I will.

darn right, I will.

emma

P.S. latest choreo involves a luggage carousel. Title: "Baggage Claim."

Nature Cabin

2011-02-27T21:13:00.000-06:00

I'm doing...okay. My spine resembles a bicycle chain. Grr. Channeling my emotional ickiness to the dance company that lives in my brain.

Gastric emptying scan tomorrow morning. It'll be fine. Reading material for the downtime between my photo shoots: the latest issue of Sojo, a Nelson Mandela biography, a novel, and a catalog so dumb, it's a guaranteed rofl.

haaahaha

et

West Bank

2011-02-24T18:18:00.000-06:00

Single Moment - Satellite Soul

Entirety(?) of dance in silhouette. Orange/yellow graded backdrop. No entrances/exits- onstage all the time. Women's quartet. Lyrical...? or ballet maybe. no pointe. definitely no ego. Must be a true ensemble piece. Motifs in symmetry; pairing; unity. Few moments of literal not moving, but whole piece feels "still." Chene turns, circular movement, tracing a circle on the floor. Center or upstage; stays center. Dancers, attention to placing. Canons during the ending orchestral part. Zero to little dramatic level usage. Smooth movement. Gentler focal points than I normally use.

Knee-length dresses with one sleeve? Research more performance apparel sites.

this song is great.

KIPP LA Schools

2011-02-23T20:19:00.000-06:00

I love Waiting for Superman. Have you seen it? You ought to see it. You should definitely see it. It has earned my highest recommendation. Four stars, and it's in my top 10 documentaries ever. Waiting for Superman. Remember that. Put in on your Netflix. Check the Redbox. Order it via OnDemand. Request it at your local library. This film, especially as an aspiring educator, just... agh. I can't say enough. Get it! (And if you have seen it, don't forget: DonorsChoose.org)

After some rough times yesterday, I was so pleased to have some energy today and *royal trumpet sounds* conquer the mall! Woo! Look at me go!

But you know what's embarrassing? Walking around a store and somehow ending up behind the counter. And trying to be like oh, heh, pardon me, didn't see you, ha, i guess my shift's not till later, well best be on my way, i'm feeling way too stupid to buy anything now, sorry again lip-pierced guy at hot topic, i was definitely not staring at you when i commented on the emo music accidentally out loud and i really did mean it when i said in my nervous sarah palin voice, you have a good day now.

All the lonely people, where do they all come from?
I dunno, but a bunch of them work at dorky mall kiosks at 2 o'clock on a Wednesday. Kioskians, hence dubbed. For your people, I have great sympathy.

Please enjoy. Now every time you go to a mall you will think of this and chuckle.
SNL - Kaitlin at the Mall

hug a kioskian!
et

Starzeddel, Brandenburg, Germany

2011-02-21T18:13:00.000-06:00

Gastroenterologist appt today went fine. My 29th(?) new doctor since this whole ordeal began. I appreciated her honesty; she has limited knowledge of whether my weight loss and indigestion are caused by drug interaction. She was somewhat familiar with the basics of POTS though, and sees two other patients with POTS.

She ordered a gastric emptying scan- set for next Monday. From what I understand, it's not particularly painful or invasive. It involves brief fasting, eating food with special dye in it, and then getting X-rays taken every 15 minutes for 2 hours. No biggie. I get to bring my own reading material. AND I don't have to wear a hospital gown. I get to wear my own clothes the whole time! YES. Obnoxiously bright-colored socks are being set aside as we speak.

I'm keeping pretty positive overall, but it's not without its occasional mental breakdowns. Body, you are so difficult. When can I drive again? This is pathetic. Listen! Don't you know there are dozens of third-world countries I'd rather be living in? Quit tossing my life around! I am not a salad.

...which makes me think of a multiculturalism lesson I once heard, about whether we should strive to be the great American "melting pot" or, rather, a tossed salad, where each identity is kept intact in creating a larger, more diverse community. hmm... :-)

keep well, love well!
emma

Recommended films:
Convicted (starring Hilary Swank)
Inherit the Wind (1960, based on the real-life Scopes Trial of 1925)
Night at the Opera (Marx Bros.)
Rainman (starring Dustin Hoffman)
God Grew Tired of Us (about the "Lost Boys of Sudan")

Telegraph Hill

2011-02-16T11:44:00.000-06:00

I think I slept for like... 2 hours? Plus maybe 30 minutes. Uhhn. Not a good brain day.

Enjoy this spoof.

et

Soda Fountain

2011-02-13T21:29:00.000-06:00

Doing "well" since I got off the Nuvigil.last week. Fever today's only 98.9!

The day I did 5 loads of laundry, I jumped for joy. But it was the wrong type of detergent, so I jumped up and put it back. I love working. Being productive is so fulfilling! I got to help out at my mom's office and dog-sit at my aunt's. A couple days were tough when I couldn't sleep, but overall I'm happy with my ability to focus.

Still difficulty eating. Things We Take For Granted today is brought to you by... Saliva! It really, really helps break down food. Or at least that's what I imagine when food turns sandy in my mouth and I want to spit (pun intended) it out. I am virtually never hungry. Eating is so unpleasant; I can't even think about it. But I am able to eat some. It helps if I'm reading, or if I'm eating with someone else, it's usually a welcome distraction.

I'm frustrated, but not worried. I can recondition and get stronger physically. Go team.

Hey. I'm behind on like 12 means of communication. Sorry. I'm working on it. So I'm sending you BIG oodles of love!! And a blog you might enjoy: Things We Forget.

I have Random Acts of Kindness stories for later! Gotta sleep now!

TWLOHA,
emma

Torres del Paine National Park

2011-02-05T21:47:00.000-06:00

Survived the blizzard! I was glad I didn't react too badly to the storm itself; randomly teary eyes, but no mood swings, brain fog, or higher fever than usual. (Still around 99-100 all the time. Generally staying away from Advil/Tylenol/etc - the "relief" is so temporary for me that adding another drug isn't usually worth it.)

I'll be the first to admit, yes, I'm on the scary side of skinny. It ain't pretty. My body doesn't want to eat, doesn't want to digest. Very little appetite and short on saliva. Could drug interactions be to blame? Saw my IEP yesterday about it - he took me off Nuvigil and we'll check my progress in a couple weeks. He recommended a gastroenterologist and as much high-calorie, high-fat, high-protein foods as I can stomach. Oh dear. Trying!

Have to rest. Have to sleep and eat...and plot how on Earth I'm going to fit 10 more amazing travel pictures on my wall.

wander,
et

Smith Memorial Music Hall, Rm. 106

2011-01-30T13:54:00.000-06:00

Fever, Day 8. Hovering right around 100. Generally couch-bound; still losing weight and muscle; doing all the things a person does to try to get healthy and gain weight.

Love documentaries and independent films. Love! Why do I ever watch dumb Hollywood movies? Ah! I saw this short film called "Lil'A" about this 11-year-old kid... who's like the greatest dancer of all time. Hip-hop, breaking, krump -- in Germany! So watching a lot of inspiring stuff... and staying far away from my family's germs.

Got any film recommendations?

love and light,
emma

Kakuma Refugee Camp, Kenya

2011-01-25T21:01:00.000-06:00

Recently posted on the POTS facebook group: an amazing slideshow of POTS info, photos, quotes, and inspiration. Hoping the link works...

POTS video - "Before the Morning"

Sillington House

2011-01-23T16:41:00.000-06:00

My toes and nose are very cold. I'm running a temperature. And have a headache too. Therefore slightly grumpy. My body's weak-weak-weak. I don't care to go into details about how much my knuckles, ribs, and knees agree with this obvious statement. :-(

Plan of attack: We are going to eat, and stretch, and exercise, and rest a lot in the meantime! Things will turn out. Yes. Yes it will. We will eat a perfect, plentiful amount of foods that do not make us feel like "wauugghh oww bluhh." No pain, no gain.

[Very silly explanation of pun involving stomach pain v. gaining weight.]

all right, enough for one day. time to rest.

emma

Choir Rehearsal Room, Ball State University

2011-01-20T18:01:00.001-06:00

Happy Anniversary! Yes, a truly blessed and very merry one-year to the Emma Trevor Institute of Thought and Design. We don't have a design yet, but it's the thought that counts. And cheers to you-- two years of Stronger On The Other Side, and by golly am I stronger! Hope you are too, that something here inspires you in some small way. That's what it's all about, right?

In celebration of our anniversary, The Institute has committed to performing 20 random acts of kindness in the next 20 days. (...because I'm 20, and it's January 20, and three weeks seemed about right, not to mention the tallies work out nicely...) What would you do with your random act of kindness? Most likely anonymous. Quite possibly free. Might take you less than ten seconds. Bet you can think of 10 things right now.

So that's what I'm doing. Twenty in twenty. Join me?

smile,
emma

The Ashley Clubhouse

2011-01-18T10:11:00.000-06:00

An energetic few days! Now feeling crappy. Didn't sleep well.

Dance stuff:

Redeemed (Charlotte Martin) - I love everything about this song. Will choreo at some point.

Haven't found music yet. Title of dance: "The Weary Bell-Ringer" - for female solo. Very dramatic.Tan, tattered dress. Dark, dim lighting. Stormy? Cues for lightning? Ropes (symbols of bells)...12? Hanging in a clump centerstage. She gets tangled. Experienced gymnast. Dissonant bell-chord at finish?

Title: "The Anti-OxiDance" - idk yet. Will have to study nutrition more. Dancers play the parts. Acai berries or green tea or dark chocolate or something. De-lish. (Superfood?! this could be quite fun.)

Menlo,
et

The Bench to the Left of the Kmart

2011-01-14T20:20:00.001-06:00

These types of posts may make no sense. Just notes that I won't lose or forget. feel free to skip.

i'm sure this song has been done a zillion times already (for dance) but it is quite excellent.

Mouthwash (Kate Nash) - for women's ensemble. 30-50 dancers? Big production. For stage? Ideal. Realistic? Maybe not. Could look great on film. Multi-media?

maybe taking beginning lyrics as too literal of a cue. hrm. but diversity! lots lots! age, size, race, anything. (no younger than 15 though.)

Cast- in order of appearance?
white bathrobe
hair in white towel, green mask face
white cami and... dance shorts? or zipping up (dance-able, obviously) skirt?

looking in mirrors, displeased. (not unison.) pantomiming morning tasks.

others entering more rapidly. (random descriptions)
jeans, sweater
shiny watch
biting nails
cell phone, laughing
flipping through index/flash cards? business cards?
fingers plugged in ears
coin purse, counting
some kind of uniform. scrubs?
leg-warmers, tights, tunic? jacket?
high heels & up-do hair
homely, dirty, perhaps injured?
pinching nose bridge and looking up, pacing
name badge hanging from neck

none interacting? many seemingly "put together" but show more emotion/anger as approaching chorus.

ideally each "character" gets introduced for a second? dancers are actors. should know exactly the character being portrayed. woman's name, age, place of birth, language. family. personal history. hopes, dreams, fears. habits. favorite food. pet peeve. what happened last year, yesterday, 1 minute ago. what is she feeling? why has this propelled her into movement? what has been realized or accomplished by the end of this piece?

(oh my goodness. i am my theatre teacher.)
(and that surprised exactly...zero people.)

chorus, thinking unison or clear 2-part canon.
"singing oh-oh" - individual. levels! improv? some exit.

"even if you try to hold me back"- punk/black lipstick girl runs to downcenter, two others backflip downstage.
everyone passing in patterns throughout the stage. 5 or so interactions: helping another up from ground, back-roll thing, coordinating levels, nod. are they understanding each other? every person is going through something!

can't decide how to end. i kind of would like to fade out the music til the girl "tuning out" (fingers in ears. or ear buds?) is out loud singing "oh oh" ... as if ... content is not the right word. less afraid? i think she's the youngest one of the ensemble. then silhouette against a warm color. orange/pink?

et

Wherever Kate Jablonski Teaches

2011-01-12T17:07:00.000-06:00

What I'm "working on" today. Keeping choreo ideas where I'll be able to find them again.

We Are Okay (Joshua Radin) - for 3, siblings reminiscing. I think 2 men/ 1 woman, for lifts.

Set: mattress, desk (wheels?), chair (non-spinning, but with wheels? like the seat stays still but the chair itself can be moved), or 3 blocks representing furniture. Props: bedsheet, woman's sweater (cerulean?), books. [flashlights? cardboard box? pillows? toy chest?] Wardrobe: pajamas/sweats/tanks. Bare feet. Little/no makeup/hair. Lights: morning ish, like through trees into a house. Performance space: stage.

sister wakes up 1st. brothers reluctant, studying?
lyric "home/cardboard" = all 3
2nd chorus - jubilant
peter pan theme, pirates, follow-the-leader, woman "walks the plank" (off the desk) men catch (and throw?) her.
canon/jumps
sweater becomes cape, baseball cap as crown? or begging? chair=throne? lots of pantomime and imaginitive play possible. smile!
birth order? make clear, although they're grown and needn't be height order. sister oldest like Wendy? idk.

desk: start stage R, facing stage R. chair there where it should be. desk ends: centerstage/down center, facing audience. chair ends up...someplace else.

bed always up-center (pretty sure)

finish: stage lights out, shining flashlights out from fort (made by sheet+desk)

...and maybe all that won't fit into 2:45. shrug. :)

Take My Hand (Shawn McDonald) - for young men's ensemble (age 13-16?), ideally 12 dancers, basketball court, brick/concrete wall, daytime, urban. For filming and/or live performance. (Not for stage.)

*splice to be around 2 minutes
**do another song by this artist/style for younger boys (8-11? 12?)

(Copyright 2011, Emma Trevor, The Emma Trevor Institute of Thought and Design, est. 2010, Co. Inc. TM. R. Other things that says this is (to quote the seagulls) mine. Claiming someone else's work as your own is rather pathetic and petty. So don't, k thanks.)

Dublin

2011-01-07T22:26:00.000-06:00

Two whole days! No fever! :)

Prayers please for my dad. He's in a lot of pain from what has been (finally) identified as arthritis.

Elam

2011-01-05T18:55:00.000-06:00

...part II:
*shakes screen*

haha. nothing too exciting here. still feverish. plotting escape.

et

http://www.cartoonchurch.com/content/cc/etchasketch/

Cambodia

2011-01-03T22:37:00.000-06:00

Feeling stuck. Buh. Fever.

What I'm choreo-ing:

Let The Rain (Sara Bareilles) - for octet

Orange Sky (Alexi Murdoch) - for featured six (three men, three women); 5-6 more (any); and ensemble (equal men/women, no more than 16)

next up: something completely different. The Section Quartet?

move,
emma

Stairwells

2011-01-01T21:29:00.000-06:00

Wish I were at his worship concert tonight. But I've been blessed these last couple weeks. Really, what's a few days back in bed with a temperature?

Happy to see friends! Friends in real life! Yes. Face-to-face friendships are excellent... and shall occur as soon as I mercilessly mutilate this pesky cold/flu/bug with... a weapon. A really, really... mean-sounding weapon. Like WAH-pff-Kshoo-ner-5000...SuperSonic Math Blaster Edition! (Reason #437 why I should be a camp counselor for 8-year-old boys.)

stay warm, windy city!
emma

Wesley Woods

2010-12-23T19:07:00.000-06:00

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

2010-12-18T11:35:00.000-06:00

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

2010-12-09T11:20:00.001-06:00

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

2010-11-23T17:06:00.000-06:00

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

2010-11-15T22:31:00.000-06:00

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

2010-11-07T22:48:00.000-06:00

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

2010-11-01T21:43:00.000-05:00

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

2010-10-26T21:13:00.000-05:00

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

2010-10-23T22:50:00.000-05:00

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

2010-10-16T22:43:00.000-05:00

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

2010-10-10T21:05:00.001-05:00

[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

2010-10-03T22:01:00.000-05:00

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

2010-09-29T09:19:00.000-05:00

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

2010-09-25T22:03:00.000-05:00

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

2010-09-23T09:37:00.001-05:00

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

2010-09-19T23:32:00.000-05:00

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

2010-09-14T08:43:00.002-05:00

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

2010-09-09T07:08:00.002-05:00

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

2010-09-04T16:10:00.003-05:00

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

2010-08-31T17:50:00.002-05:00

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

2010-08-27T18:57:00.002-05:00

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

2010-08-23T18:35:00.003-05:00

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

2010-08-18T20:46:00.002-05:00

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

2010-08-17T18:42:00.002-05:00

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

2010-08-15T13:40:00.003-05:00

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

2010-08-09T20:46:00.002-05:00

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

2010-08-02T13:19:00.002-05:00

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

2010-07-26T23:00:00.002-05:00

( ^ 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

2010-07-24T18:11:00.003-05:00

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

2010-07-18T13:57:00.002-05:00

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

2010-07-10T20:17:00.003-05:00

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

2010-07-05T22:27:00.002-05:00

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

2010-07-02T21:37:00.002-05:00

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

2010-06-29T06:21:00.003-05:00

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

2010-06-25T17:18:00.002-05:00

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

2010-06-22T14:23:00.002-05:00

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

2010-06-19T22:39:00.002-05:00

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

2010-06-16T22:19:00.002-05:00

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

2010-06-14T21:17:00.002-05:00

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

2010-06-11T17:18:00.003-05:00

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

2010-06-08T21:08:00.002-05:00

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

loose change,
et

Snow in August by Pete Hamill

2010-06-06T09:12:00.003-05:00

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

2010-05-31T22:22:00.002-05:00

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

2010-05-29T14:56:00.002-05:00

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

2010-05-26T21:21:00.002-05:00

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

2010-05-24T13:43:00.001-05:00

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