Tuesday, December 29, 2009

No Idea

It's time to make some kind of plan, some kind of decision. Time to move in some direction.

Noooo idea. No idea what to do. Nope. I mean, there are lots of options...?

This is me. This is uncertainty. This is uncertainty eating me alive.

Results are in, 2008 was a record-breaking year for high mercury levels in Chicago drinking water. Tests for mercury poisoning are crummy, from what we can tell. But some symptoms include muscle problems, fatigue, hair loss. Sounds fishy. (Oy. Sorry.)

Oh! And I keep forgetting to post the article that was written about me and another POTS patient in the area, published a few weeks ago. There were definitely a few MAJOR cringe moments in reading it. Let's just say the reporter didn't check the facts with me before it went to print. All in all, still helping to promote awareness of Dysautonomia/POTS.

http://www.pioneerlocal.com/lincolnshire/news/1912557,lincolnshire-POTS-120309-s1.article

the days are getting longer!
et

Friday, December 25, 2009

Christmas!

And so it was proclaimed in the highest... APPLICATION SUBMITTED!!

Celebrate! And email my admissions counselor! And call him! At home! Ten times! Leave messages!

I've applied for Fall 2010 at USD. Looking into the possibility of living on-campus in the Spring (January-May) without taking classes. Also looking on Craigslist for housing in the area.

Free advice: When listing, please specify the gender(s) of the residents and who exactly it is that I'm calling. These situations are strange enough already.

[Man's voice] "Hello?"
"Oh. Hi. [Awkward.] Um, yeah. I was hoping you guys were girls? [2500 Stupid points awarded to me.]"
"Uh...yes? The tenants are female...[I am now VERY confused.] I'm the landlord."

And if you dont use punctuation no one will be able to understand anything okay what were you thinking not putting any periods or commas hello hello great location wait where is it and theres no pictures dont you want to rent your place is it so hard to poofread do you speak english utiliies included call TODAY!!!!!!!!!!

haha.

I love Deerfield! Had some more energy yesterday. t was great to be back at church and see everyone. You all rock! Singing the alto line is fun. And it scares the visitors. :-)

Merry Christmas everyone!

love,
emma

Tuesday, December 22, 2009

I'm a Celebrity. Buy My Book.

Not sleeping well, yet lots of vivid dreams. Acute analysis suggests I take music too seriously. Yes, my worst nightmare centers around a performance space with (gasp!) subpar acoustics.

Glad I've been able to attend some Christmas gatherings, but it's still a challenge physically. I can feel the changes in the barometric pressure more. Snow is the worst. Fatigued, achy, little appetite, foggy thinking. Tomorrow they're saying freezing rain; we'll see if/how that affects me.

So it seems the obvious solution is to move to San Diego... I wish it were as simple as that. Illness sucks. More questions than answers. It doesn't make sense for me to stay here when I can function there, but What If? I hate that. Stupid POTS. You have to address every fear, every possible situation. Short-term, long-term, in an emergency? Too much to think about.

It's stressful.

Economics might have been my worst class in high school. But I remember learning about opportunity cost. You have to choose one or the other, not both. Every decision comes with some risk, some loss, and maybe a reward. Living in San Diego could be awesome. It could be the link back to a normal, productive, fulfilling life. Or not. No guarantees.

I don't know! 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. :-)

peace by peace,
emma

Monday, December 14, 2009

Indecision! Surprise, surprise.

Total overload. Finished the app.

[Favorite question: "List your top 5 talents" "Only five?! My sense of direction alone is so unique, I could do five on just getting lost. In the car. On a boat. In a Reese's!"]

Ha. Well. Tomorrow we will send it all in, maybe? So stressful. I wish we could take health out of the equation entirely. Please pray!

walkie-talkies,
et

Friday, December 11, 2009

San Diego - Day 7 & Back to Chicago

Our last day in SD was sunny and warm and full of packing madness. At the airport we sat outside for maybe 10 minutes, and I felt 100%. I wanted to go jogging. Just amazing. The flight was totally fine again! Even coming into Chicago (7°) was good. I'm so proud! I can fly!

Starting to feel some of the symptoms creep back in, so I'm eager to get all my USD application stuff together ASAP! :-)

et

Wednesday, December 9, 2009

San Diego - Day 6

Today we toured the University of San Diego, a private Catholic school. It is exceptionally beautiful. The admissions staff was very understanding and a lot more flexible with my limbo status of freshman/transfer. So based on my situation and my high school performance, they're making some allowances for me. I am applying for spring semester! Starts at the end of January.

Did I mention I'm feeling awesome?

So this is the plan. Get home tomorrow. Phone calls and paperwork and preparing for auditions. We'll hear about financial aid and go from there.

The back-up plan is to attend Mesa Community College and possibly transfer to USD in the fall of 2010.

Yeah. It's way more complicated than that. We'll see what happens. So, so, SO happy to be physically doing so much better though. Praise God!

"So...do you guys have a hockey team?"
"Um, no. It's California. How about...windsurfing?"

emma

Tuesday, December 8, 2009

San Diego - Day 6

The great news is, I'm still feeling great! The bad news is, state schools here are more than a smidge complicated. Touring a private school tomorrow. Hopefully less red tape!

"This is the lamest excuse for a pillow EVER."
"That's a pile of bedsheets."

et

Monday, December 7, 2009

San Diego - Day 5

It's a monsoon outside. I'm not even exaggerating. The locals are panicking a little. They're saying this is about as much rain as they get in a year. Lucky we are safe in the hotel!

From what my mom has read, this is the worst barometric pressure SD can have. So a nice experiment for me, I guess. And I'm feeling pretty good! I was so hyper last night, on no sleep whatsoever, I was afraid I'd have trouble sleeping again. Psh. Nine hours solid. Awesome.

On the school/life front, let's make a flowchart.
Plan A - Shrug.
Plan B - Roll eyes.
Plan C - Pull hair out.

We will see. Patience, grasshopper!

et

Sunday, December 6, 2009

San Diego - Day 2, 3, 4

Hello! Finally an update. It's been cloudy and cool here. Roads are crazy. We're starting to get the hang of it.

Got in Thursday night. Friday was great. The pressure is SO much better here. Overall feeling pretty capable. Tired later in the day from so much sun. Numbers are good. Trying to get enough food and fluids. It's hard when my appetite is nonexistent. [Missed the carol concert at USD, but now I get to hear it online!]

Saturday we walked around SDSU. Lots of walking and stairs! And not using the handrail! BAM. Campus is beautiful. Lots of serious studying going on. :-) Official tour and admissions meeting on Tuesday. Will have more info then, maybe? Rested, then a fun evening out. That's Howey Do It.

Last night I didn't sleep at all. Not even 5 minutes. Too much on my mind, I guess. Been able to stay awake all day though! I am certainly doing better, but there are a lot of questions still about my health. The wheels are in motion. We'll figure this out. Will keep you posted.

Surf's up, Grainy Waffle. (Sandy Eggo. Get it?)
et

Friday, December 4, 2009

San Diego! [Day 1]

Yesterday: First snow in Chicago. Magical.

The flight was fine! Tremors and some involuntary muscle twitching, but takeoff and landing, no complications. Didn't have to use the wheelchair - yay! We arrived in San Diego 40 minutes early. Superb.

Right away the air felt...happy? Awake? Like my brain was already reacting to the climate. I pulled my own luggage and helped with the GPS and everything!

Today things are going really well! It is absolutely gorgeous. Sunny, warm, palm trees. Swam. I can feel the pressure here is better. My hands and feet look normal, my veins look normal, my thinking is getting clearer, and I'm just feeling...good? Is that possible? I feel good?

Schools! Choirs! Yay!
emma

Thursday, December 3, 2009

What Is Not The Name of the Game? Avacadon't.

We made it! Hoorah! Must sleep!

details later,
ezmma

Wednesday, December 2, 2009

How To Tune a Jingle Bell

December: Best-sellers waiting to happen.

"I'm leaving for San Diego tomorrow!"
"WHAT? What happened to [chant] 'two days away'?"
"You mean yesterday?"

haha. Yes, tomorrow! Please say some big prayers (or lots of little ones) for the flight to go well. Symptoms, for sure, but no in-flight movie?! Reason for concern, I should say. The good news is we get to board first, steal all the pillows and blankets, and press the attendant-call button all we want. Mwahaha.

Must...pack...now...or later.
Yeah. Later sounds good.

I shall write you from the West Coast. Oh climate. Be good.

Much love!
emma

Sunday, November 29, 2009

The Paper Bag Princess

Sleepy. Trying to eat more. Sore from swimming. Numbers are looking good, about 115/75 and HR 80.

I would like to thank Pandora radio for randomly selecting a zillion songs about Traveling, Journeys, Moving, Going West, The Ocean, California, and Boardshorts. If this trip doesn't work out, hey. Still good tunes.

Four days. Yeep!

switchfoot,
et

Wednesday, November 25, 2009

Silly Tilly's Thanksgiving Dinner

I used to read this book every day when I would babysit. Every day! Oh chilluns. I miss them.

Update-
Sat: more energy! Julia and I did laundry and watched Sunshine Cleaning. In her words, "AHH! THEME NIGHT!" haha
Sun: tired, sore.
Mon: Julia sick. I swam.
Tues: meh, same old. Exhausted.

Today looks good so far. I got 10 full hours of sleep! Yay! I haven't been sleeping well at all lately.

Getting psyched and nervous for the big trip. Guess who's gonna be there the same time as us? Aunt Lauren! Carleen! Jerry Seinfeld!! Oh yes. It's a sign. The whole world is flocking to San Diego. haha

Happy Thanksgiving! Hope you are well.

pie,
emma

Friday, November 20, 2009

The Librarian from the Black Lagoon

Increased Celexa to 20mg. A little better today?

Temperature is about the same as always. Blood pressure is good. HR is getting higher though, as expected I guess, dropping the beta blockers.

The intro to Owl City's Fireflies needs to be added to the appendix of This Is Your Brain On Music.

dewey decimal,
emma

Tuesday, November 17, 2009

Curious George

Mom and Jimmy have the flu. Hope they feel better soon! Keeping my distance.

My mom found a great compilation of Dysautonomia symptoms here: -- first real explanation we've seen for hair loss: "due to decreased blood supply to hair follicles." See, it's not stress. Circulation!

Pandora.com music is addictive. I was given fair warning. But it's so good! Definitely helping get me through the day. :-)

refuse the flu!
et

Saturday, November 14, 2009

Chrysanthemum

Hi. Still here. Weak and drowsy; tremors. I was saving all of my energy to see Julia's show, Les Miserables. Vocally stunning. Very emotional for me too, since I've had to miss so many events. All week my sister kept checking in on me. "Rest! Rest!" I'm grateful I got to see the musical, although it was extremely difficult to be out for 3 hours. My circulation's been acting up the last couple weeks, and the blood in my arms feels like ice water - a new symptom. At one point during the second act my entire right hand went numb. Scary, but also just upsetting that I couldn't applaud. Body, sometimes you...agh. You fail me.

I write this blog for a number of reasons, but mostly I'm just trying to be open and honest about what it's like to have POTS. It's ugly. And it's not fair. It's not fair to anyone!

The good news is some friends of ours just got back from San Diego - one who has arthritis and another who suffers from migraines - and both were symptom-free while they were there. Oh my. Please let San Diego be the Promised Land!

Start the countdown - 19 days.

My sister is awesome!
emma

Monday, November 9, 2009

The Giving Tree

Today we went to see Myron the shaman. We had no idea what to expect. It was a Hail Mary pass, trying out this type of treatment, but I think the day's been rewarding. It's healthy to be open-minded about all cultures and their respective views on healing. Western medicine just doesn't jive with everybody. I believe God seeks to bring us peace.

I'll save the long stories for another time, but basically the shaman established and interpreted some resonances. He read that I'm very disturbed by the fact that the world isn't fair -- isn't even close. And he reminded me that there's a difference between empathy and carrying burdens. True and true.

Good, weird experience. So we'll see in a few days if I'm feeling better or more energized. Hope and pray!

The shaman also mentioned that he's going to San Diego this winter too. And even with his worldwide travels, he's never been there before. Coincidence? Hmm...

nourish your soul,
et

Saturday, November 7, 2009

Corduroy

Phew, it's been a rough week. Getting a few thoughts together:

1) The writers of the POTS petition submitted it earlier this week. Thanks again for all the support!

2) Adjusting to Celexa - ew. Nightmare. Hanging on to the fact that others have done well on it!

3) Greg Page is performing again! He is the POTS sufferer of most notoriety, being the co-founder of and the original Yellow Wiggle from the Australian children's band The Wiggles. He was diagnosed in fall 2006, at which time he had to leave the Wiggles to focus on his health. Sounds like he's recovered enough to be back touring with another band. Yay! Success stories are my favorite! Here's his website.

4) I got a call inviting me to participate in some POTS research in NY! I don't think we'll be able to make it, but POTS and/or Chronic Fatigue friends, let me know if you're interested in participating in a medical study in January. More info here.

To Madison tomorrow to see the shaman. Getting excited for Les Mis this weekend. Go Julia!

escalators,
emma

Wednesday, November 4, 2009

Ramona Quimby

My mom and I will be traveling to San Diego in the first week of December. To take this trip is a risk to my health and a huge inconvenience. It is solely to see if my autonomic system can function properly. We are all desperate for something that will help my medical condition. It is NOT a vacation for me and certainly not for my mom, who will still be working while we are away.

My illness has been excruciatingly difficult for my whole family. Most people could not possibly understand.

A challenge to stay sitting/standing. Off the beta blockers and started SSRI Celexa. Adjusting for the next week or two.

Send more brain to my oxygen. More info later!

love,
emma

Monday, November 2, 2009

The Sneetches

A friend from church saw the shaman today - very encouraged. Got an appt for next week!

I now have the ability to hear the entire overtone series... in a lawn mower.

Fear not, citizens. This issue jam-packed... with entirely useless superpowers.

stars upon thars,
et

Sunday, November 1, 2009

Eloise

November titles will feature a few favorite characters from children's books.

I'm not doing well. The symptoms are all too familiar -- heart pounding, tremors, muscle twitches and cramping, light/sound sensitivity, brain fog, exhausted beyond belief. Resting, trying to stabilize my breathing patterns. I know I sound like a broken record, but it was exactly this time last year... there HAS to be an environmental or seasonal component. (It's not stress, that's for sure.)

Looking into visiting a shaman (healer) in Madison. Anything to manage the pain and get back to a normal life!

It is the day after Halloween. Orange party decorations are now 75% off. Illini fans, you already knew that. (We beat Michigan?! Yeah!!)

skipperdee,
et

Thursday, October 29, 2009

Candy Corn

Mestonin didn't go well. :(

So - Plan B - weaning off the beta blockers and then starting Levsin (hyoscyamine). One of these has got to do something. It's like 50 first dates of the pharmaceutical world. Except there's no compatability test.

... Chemistry.com ...? oh MAN. The puns are endless.

bahaha
et

Autumn-inspired joke from Julia:
"What is the relationship between a pumpkin's circumference and its diameter?"
"Pumpkin PI!"

Happy belated bday, Dad!

Tuesday, October 27, 2009

More Trees

Hi. Back from our first appt with a local cardiologist - Dr. Nazari. Funny, great, personable, but also very honest that POTS sucks and all the treatment is trial-and-error. So frustrating. "POTS is an orphan disease -neurologists, cardiologists, rheumatologists - nobody wants it." [Me neither.]
  • Very happy I only had to do an EKG. Stats: 124/64, HR 50. No blood tests! Yay!
  • Their office is, how shall I say, thumbs-up. Only 5 minutes in the waiting room, and my Rx had been emailed to the pharmacy before we left! :) Communication SO much more efficient than at the other doc's.
  • I'm starting Mestonin (Pyridostigmine) - a drug commonly used to treat muscle weakness in patients with myasthenia gravis. Results should be pretty immediate.
  • Potentially making an appt to see Dr. Suarez in Toledo, Ohio. Dr. Nazari said it's a long wait but worth it. The biggest names in autonomic disorders are there, and the next tier can be found at Vanderbilt, NYU, and Mayo.
  • Interesting tidbit my mom found - "Fifty percent of POTS patients know the exact day they got POTS." Count me in.
And if nothing else works, we know the barometric pressure in San Diego does not fluctuate. Some patients are totally asymptomatic there. Fab.

Um. What else. Pupils are weird again. I'm tired.

healthcare lobbyists!
emma

Friday, October 23, 2009

Trees

Some of the old symptoms are back. Headaches, foggy thinking, not sleeping well, short of breath, tremors, Raynaud's. Totally wiped out. How much of this is seasonal? New doctor next week.

LAW 199 - The American Health Care System: Crisis and Reform. CHP is my favorite!

et

Tuesday, October 20, 2009

My Birthday!

And for this, my 19th birthday, I give thanks. After all we've been through, I'm still here.

What a year.

I want to thank everyone who's been so supportive, especially of the Dysautonomia Petition. We are over 1,100 - and still going strong! I wish I had the energy to acknowlege everyone individually. Here's my great big thank-you:

THANK YOU!

ha. ha.

(The link again! http://www.gopetition.com/petitions/dysautonomia-awareness.html )

What, a year? Jeez I miss you people. Thank you to everyone who's kept in touch, even in small ways. I think I may have accidently disabled comments on the blog - sorry! Let me know if it's working now.

Celebrate. New day. New year. Ready, go.

et

Friday, October 16, 2009

Pumpkins

Because there is nothing more punk... than a punk'n. :)

Physically the last couple days have been the pits. A lot of the symptoms I developed around this time last year are showing up again - extreme weakness, numbness, ringing in my ears. Resting constantly.

But I'm still encouraged by the POTS petition - we're 950+ ! Yay! Again the goal is to reach at least a thousand, but the more the merrier, really. Don't be shy! Forward it along! :)

Have a great weekend,
emma

Tuesday, October 13, 2009

Gettin Chilly

A balmy 45° in Chicago today. Sigh. You know Chicago -- it's like the Miami of Canada!

Haha. Don't remember where I heard that, but it's funny. (Please don't sue me.)

My extremities are ice-cold -- combating with heating pads, wool socks, and mittens. Go circulation go!

850+ signatures on the POTS Petition. Woot! We're well on our way to 1,000 - thank you so much and please keep sending it on! :)

best,
et

Sunday, October 11, 2009

Affy Tapples

What a beautiful day for the Chicago Marathon! The human-interest stories continue to inspire me. The individual capacity to overcome obstacles is remarkable.

I could say a lot more, and I'm sure I will later. Gotta rest now.

Favorite video - A Dance for Life - be more than just steps!

m-man I'm lovin this - peace!
emma

Thursday, October 8, 2009

Harvest Moon

There are some better hours. And then there are days when you think Honestly. Papier-mache, in all its noxious, sticky, loathsome horror...yes. Even papier-mache could improve the way I'm feeling right now. haha.

The more emails I get, the more I'm determined to keep speaking out for POTS awareness, funding, patient support, everything. It breaks my heart what we go through. Doctors are often so quick to dismiss the symptoms. Patients are told for years on end, "Oh calm down. You're just stressed. Stop exaggerating. Get over it." Unacceptable. It's bad enough that POTS and other forms of Dysautonomia aren't on the medical radar. But it is nothing short of degrading to suggest and to insist - "The tests were fine... so...you're fine. Quit whining." Ugh. Totally unacceptable. Time for change.

Thank you for signing the petition to raise awareness for Dysautonomia! (Here it is again: Dysautonomia Petition) So far, over 700 signatures from around the world, keep passing it on! High five! :)

Stay snazzy,
et

Monday, October 5, 2009

Crunchy-Looking Leaves

Oh. Hi. Time for a semi-substantive update?

Unpredictable. Cold extremities, tired, headaches, chest pain, palpitations. Numbers are okay. Still doing the tilt-training, lots of sodium and fluids, 5 Hour Energy, swimming on occasion. I'm getting by.

School is...not looking good. Rar. Stupid body. Prayer and patience, keeping a sense of humor.

SNL - Threw It On The Ground - hahaha

peace up, a-town down,
et

Saturday, October 3, 2009

Plaid

"This is wack."
"Wiggity-wack?!"
"No. Just the regular kind."
- teen girl squad

=)
et

Thursday, October 1, 2009

October Lovers Club

October Lovers Club is, in my humble opinion, the best club at U of I. I didn't get a chance to officially join, but truly, I hold it in high esteem.

I love OLC because it celebrates everything about October, autumn, and the unity of a college campus, particularly a college campus surrounded by corn. And apple orchards. And an abundance of horticulture experts. But mostly corn. Welcome to Illinois, the cream of the crop. There's basketball season...and harvest season. Which one do you think gets more attention?

And those rumors explaining why the Undergraduate Library was built underground... yep. All true. As the song says, You can't throw shade on the corn!

I'm not kidding.

Blog titles this month will honor October's greatest features. Honoree #1: The October Lovers Club t-shirts.

morrow plots,
et

Wednesday, September 30, 2009

POTS Petition

Do you want to raise awareness for POTS and Dysautonomia? Of course you do!

*Sign the POTS petition!*

Just need your name and email address, takes about 10 seconds. Or you can sign it anonymously too! The group that wrote it is working towards getting enough signatures to earn national media attention for POTS. The agony we've been through, and the fact that our doctors haven't even heard of it -- time to make some NOISE! (*air horn* haha)

Seriously. Do it now. Send it around.

Now!

thanks,
emma

Sunday, September 27, 2009

Kit Kat Bar

Still feeling crummy. The constant battle of it, physically and mentally, completely drains me. Focusing everything on my health right now. Numbers are weird: 135/80, HR 44. What a mess.

But we got good news! My dad's company just announced that starting next year I can't be denied health insurance based on my status as a student. Huge relief. My mom is working so hard, talking with all the docs, profs, and insurance reps. What an awesome blossom, my favorite researcher. Ahh and I am so happy about 1/1/10!

Break me off a piece of that... (Andy Bernard... The Office... Anyone?)

dunder mifflin,
et

Wednesday, September 23, 2009

Sno-Caps

Navigating the highs and lows, pain and paperwork. Exhausted. Haven't been able to make it to class, but trying to keep our options open. Complicated, unpredictable stuff.

Favorite song of the moment: Clock of the World by Krista Detor. Brilliant voicing.

love and love,
emma

Monday, September 21, 2009

Dots

...
...
...

Basically bed-bound. Day 10. Really tired. All the time.

Working with the docs and school administrators to get special accomodations...?

...gonna get through this. Absofruitly.

et

Friday, September 18, 2009

Mega Warheads

Extreme fatigue; nausea; chest pain. Missed class again this morning. Ugh. One day at a time.

My numbers are looking better, but I could really use some prayers for pain relief.

We're trying to figure this out -- could it be the "fall slide" that some POTS patients experience with the change of seasons? Who knows. *Shrug*

roller hockey,
emma

Thursday, September 17, 2009

Sour Patch Kids

Activity has been very limited for the last six days. Super tired. Pain, esp shoulders. Palpitations. Rar. Missed class yesterday. Womp-womp. Major, major womp. : (

Numbers:
lying down 111/55 ..... HR 60
sitting up ...113/62......HR 69
standing .....93/62 ......HR 84

Today- titrate up the Midodrine to 10mg 3x/day and see how it goes.

Relapse is such a strong word. I prefer Remix. Not what you'd expect, so find a new groove and let the beat rock.

brikka-brikka-ow,
et

Saturday, September 12, 2009

SweetTarts

Last couple days, not so good. Exhausted, palpitations, joint pain. So frustrating. Agh.

BUT I am so, so blessed! My blog lurkers are the coolest. Hang in there, POTSies!

Advocacy-ness:
  • Here's the National Dysautonomia Awareness Week event page on Facebook.

More later, gotta rest!

Keep those spirits up, yeah yeah?
et

Tuesday, September 8, 2009

Take 5

Pacing, timeless jazz, and a candy bar.

Swim, school, rest rest rest.

Thinking fondly of Krannert and the School of Music,
et

Thursday, September 3, 2009

Almond Joy

This month's titles will feature - you guessed it - candy!

Starting classes at community college has certainly been a test, physically and mentally. My good hours are great, yet the bad days are totally consuming. It's a lot of uncertainty, but we're just taking it day by day. After exploring the droptions (ha), I changed my schedule, trying to space out my classes more. I need a lot of time to gear up and then to recover. The goal is to stay a full-time student. New sched: EnviroBio, Film, starting Speech in a couple weeks, and taking Linguistics online (oh the irony!).

For Linguistics, I like the online setup so far. It's such a relief that I can work around my own schedule. If I need to rest, no worries, I rest. I can choose to be "in class" whenever I'm feeling well. Like today, I'm having a really good day, so I took 2 weeks' worth of notes, just to get ahead. All the resources are right there. In terms of socialization and motivation, I think a real classroom is preferable. Plus there are still deadlines and papers and projects; this format is not for everyone. But in my condition, I think the option of an online class is fab ... especially when my mental clarity is good but my physical symptoms aren't always reliable.

Extra-Strength 5-Hour Energy? Get me a shovel, cuz I dig it.

This is your brain on B vitamins,
emma

Most recent stats:

Temp: 99.5

Lying down: 128/75 ... HR 61
Sitting up: 120/78 ...... HR 59
Standing: 116/70 ........ HR 67

Sunday, August 30, 2009

Better Days - Goo Goo Dolls

Last couple days have been really hard physically. Weary from the week. I'm still encouraged that I can keep up with the "sprints;" but we'll see how the "marathon" of the semester plays out. Keeping an open mind, no pressure.

Do You Hear The People Sing? Um, yes, to no end! Haha - Les Mis auditions tomorrow. Break a leg, Jules!

peace,
et

P.S. - more tunes =)

In The Journey - Martin Sexton
Wait and See - Brandon Heath
Bigger Than My Body - John Mayer

Saturday, August 29, 2009

College?!

Wow. Sorry. Late.

Let us consider this week CONQUERED!

I went to all my classes! Woooo! I like being in the world again. Sometimes it's hard to stay focused for the whole 3 hours, but I'm keeping up with physical and mental demands thus far. It's gonna take a lot of discipline and time management. I'm definitely tired after class, but whoa. I'm in class. So excited.

My classes are, respectively: intense, fun, dull, and intriguing. How do you write a 10-page research paper on screwball comedy in American film? I guess we'll figure it out as the semester progresses. *Pie in the face!*

I was surprised and comforted to hear others' stories: financial, personal, whatever. I think a lot of us walked in thinking, "I have failed. This is not where I wanted to be." But then we realize we're in the same boat. Job losses, illnesses, this kind of stuff happens. Everybody's doing the best they can with what they have. :)

The dogs are following me around the house.
Entourage, roll out.
emma

Monday, August 24, 2009

Breathe (2AM) - Anna Nalick

Hi! Busy busy, but I'll take a moment now for an update:

Friday night was a toughie. Fatigue, pain, palpitations; I had to miss out on some family friend stuff. Sadface. Just taking every hour as it comes, trying to focus on how great my good hours are! Mental clarity = increased energy and productivity. I still get tired, nauseous this morning, but keeping positive! :)

Classes start Wednesday! Yay! I'm nervous, but mostly psyched. Keep your fingers crossed for me!

pencils and paper,
emma

Thursday, August 20, 2009

Kyrie - Mr Mister

Don't mean to brag, don't want to jinx anything, but legit, folks.

Wednesday may have been the best day I've had this year. *eee! yay!*

Practically symptom-free, on my feet mostly from 8 to 5. I was tired at the end of the day, a little foggy, some palpitations, but WHOA this is really encouraging. Progress! I should be the new spokesperson for 5-Hour Energy. I'm standing, walking, reading, driving, swimming, cleaning? I mean seriously. My room is clean.

My mental and physical fatigue were virtually beat. I don't really know how. I can't say for sure if it'll last (please!). But I have so much hope! Yay! And I'm driving! Epic.

Today's been a little slower, resting up, still good. :)

I'm reading a novel I really enjoyed a few years ago. The narrator, to this point, is a mischievous 5-year-old. Her latest adventure? Finding a fitting name for a stray cat. "Kyrie Eleison! Dona! Dona Nobis Pacem! Panis Angelicus? Adeste Fideles? Agnus Dei?!"

Hahaha.

later, Latin,
emma

Monday, August 17, 2009

More Than Useless - Relient K

Quick update:
  • Attended a family event!
  • I drove all by myself!
  • Made banana bread!
Still taking it a day at a time, an hour at a time, but I'd say things are looking up.

all-purpose flowers,
emma

Friday, August 14, 2009

Harder Better Faster Stronger - Daft Punk

Yesterday was hard. Just can't predict this stuff. Took 2 doses of 5-hour energy. Chest pain in the evening.

Today - good hours in the morning! Significantly improved endurance, walking, biking. Focusing on getting protein every few hours; it seems to help. But my bad hours come without warning. Grr. Took 1 dose of 5HE in the afternoon. Meh. I dunno.

It's a puzzlement. It's an experiment.

"It is a riddle, wrapped in a mystery, inside an enigma."

winston churchill,
et

Wednesday, August 12, 2009

More Than A Feeling - Boston

Good day count: 4 in a row.

Today I drove a car! For the first time since Thanksgiving, I drove my car! Happy happy! Bonus points: I didn't hit a single cone OR construction worker! YES.

Physically a lot stronger, mentally so much clearer, not to mention feeling really peppy. Couple slower hours in the afternoon, so we're playing around with the timing on the 5-Hour Energy.

I DROVE A CAR AGAIN! I am so excited. :)

victory,
et

Tuesday, August 11, 2009

I Gotta Feeling - Black Eyed Peas

Last night I dreamt I was shopping online for scarves. And they were all free. So I ordered like 25. And I woke up, and it was happy.

Good day again! I am amazed at how well I'm doing. Walked the dogs, practiced yoga, read... yay! Fatigued in the afternoon. No biggie. A little sore now, time to break out the epsom salts.

And yes, I am taking [song] requests! :)

let the beat rock,
et

Monday, August 10, 2009

Keep Pushin' - REO Speedwagon

Yesterday rocked. Today pretty much kicked tush. I woke up at 6 this morning with SO much energy! Mental alertness is my favorite! Yay! Tilt-training for over an hour, did a ton of chores, read the paper, laughed at my horoscope, really just feeling like my old self. :) When my mind is cleared of the "brain fog" and just constant mental fatigue, it is so much easier to be strong in body and spirit -- all three (mind, body, spirit) so important in recovery.

Very impressed with 5-Hour Energy. I am doing so much! And my numbers look fab! What a turn-around. Two good days in a row? True love is B vitamins...8000% more B vitamins to be exact. Mwah!

If you give a mouse a cookie, he's going to ask for a glass of milk.
If you give a dog a bath, prepare to get soaked.

scuba gear,
emma

Sunday, August 9, 2009

Stand In The Rain - Superchic[k]

Rough days. Didn't sleep well last night. Talking about putting me on another drug to help combat the fatigue... ugh. On a whim this morning we had me try "5-Hour Energy" - yes, the one with the ubiquitous commercials. And you know what? It worked. I was (and to some degree, still am) mentally alert! Yeah! A little hyped up, sure, but I felt really good! :)

I don't know very much about 5-Hour Energy. Claims to be more "natural" than other energy drinks - amino acids, B vitamins, and as much caffeine as a cup of coffee; low calorie, low sugar. I love the idea of boosting energy with a supplement rather than adding another drug. I'm not totally symptom-free, but it's been a good, productive day. Answered a bunch of emails, ordered textbooks, swam. Just having the mental clarity is huge. I'm hoping this energy supplement will help me get through classes -- starting in just a couple of weeks!

Right now I'm signed up for 5 classes at CLC, knowing that I can drop one if need be. The lineup is: Environmental Biology, History of Asia, Intro to Teaching, Film, and Speech. Nice.

The moral of the story: POTS is such a general description for a disorder so incredibly unique to each person, no two cases are identical. What causes a bad reaction for one person may be extraordinarily helpful for another. Find what helps you. My mantra: Whatever it takes.

Ah! And check out these freakishly stable numbers!
lying down .... 108/73 ..... HR 57
sitting up .......108/73 ...... HR 50
standing up ...116/79 ...... HR 57

Not. Even. Kidding. :)

I'll try to get to more emails etc tomorrow.

protein,
emma

Friday, August 7, 2009

Eye Of The Tiger - Survivor

Gotta keep writing. alsdkjfaklsfslkjf. agh. This sucks. Gotta do something about it.

I just finished reading When Bad Things Happen To Good People. I disagree somewhat with the author's main argument, but I like what he says about compassion. In crisis, more than ever, we need understanding and patience. Too often we're quick to judge a situation because we're afraid. We're human beings; we look for logic and patterns to explain or justify tragedy. But we don't have all the answers. Sometimes really, really, really bad stuff just happens. It's not fair.

The most meaningful gift we can give is to comfort each other, to know we're not alone.

We're thinking of starting a support group locally and online for POTS patients. Too much suffering going on here. Time to get some federal funding for POTS research. Time for change. Stay tuned.

Have a great weekend, everyone!

peace,
emma

Tuesday, August 4, 2009

Hold On - Good Charlotte

Time to catsup. (Or perhaps tomato sauce, if you're in Australia.)

Saturday was really weird. After a string of mostly good days, suddenly I just felt awful. My numbers were lookin sharp (124/81!) but I was in bed all day. I wrote that I felt "numb and hollow." Considering I don't even remember writing that, I'm going to guess my description was pretty accurate.

We had the fam-friend crew over that night. I was afraid I wouldn't be able to do much, but we ended up having a ton of fun. My favorite are the moments when I'm laughing so hard that for a couple of minutes, I forget I'm sick. :)

Sunday, crummy, but swam a little anyway. The chest pain is the worst. Yesterday was a little better. Weird dreams. Glad to see my temperature back down again - 97.9 - yeah! Today I got my butt kicked in water aerobics. I feel enlightened. BP's kinda low, looking into it. Brain's foggy. Trying to sort out some school affairs. Still doing the tilt-training for at least 30 minutes twice a day. Tiring, but worth it.

phew. that's all I got.

later, skaters.
emma


"And if I had $1000000, we wouldn't have to eat Kraft dinner. But we would eat Kraft dinner. Of course we would, we'd just eat more. And buy really expensive ketchups... like the fanciest... Dijon ketchups! Mmhm! Hmhm!"

Sunday, August 2, 2009

Stronger - Kanye West

And then there are days that threaten to rip you apart from the inside.

Titles this month will feature songs with strength-inspiring lyrics.

day by day,
emma

Friday, July 31, 2009

Ski-Free

Again, not to get hopes up too high, but a couple days ago I had my best set of stats yet!

Lying down: 117/80.... HR 64
Sitting: ........ 112/81.... HR 58
Standing: .... 107/70.... HR 65

Temp: 98.4

Tilt-training: 2 hours and 40 minutes

Ah! So great! Systolics all over 100. My diastolic BP (2nd number) is normal -- yay! And my heartrate and temperature are awesome. I can't believe how high both had been for so many months. Now don't get me wrong, I still have my lousy hours. Sometimes the tachycardia is so consuming I can hardly think. Still some low blood pressure, still some irregular heartbeat, here and there, it comes and goes. This is like my high-score card. I want to get all my tests to look like this.

But I am SO hopeful! :) Did I mention 2 hours and 40 minutes standing? Fan-freaking-tastic!

And I sat outside and read today! Mentally challenging to prepare for school and I'm really overcoming the heat intolerance. Just how long did I sit in the sun? Um, I dunno...you'll have to ask my ridiculous SUNBURN!!!! [Ooh, burn. Bahaha.] Yes, I am pink and proud!

I am just shocked by the strides we've made recently. I can't believe not a single doctor, not even the POTS specialist, ever mentioned tilt-training. We hadn't even heard of it from all our online research. Time to get the word out. Perhaps it will help other patients as much as it's helping me. :)

mo' aloe f'sho, bro.
emma

Wednesday, July 29, 2009

Ms. PacMan

I need to add a new disclaimer: I'm happy to share what's working for me! But please, consult your physician before changing your treatment plan.

Omigosh. Attack of the brilliant ideas! When I become famous -- you know, as a talk-show host or a west-coast rapper -- after my book's published but before I name my children Pez Dispenser and Soapbox Derby, I should totally engineer a new drug and name it after myself! Can you imagine? Sappy commercials and horrific side-effects. Emmatrevol.

haha *Cue tomato-throwing*

Anyway, down to business, GOOD DAY! If this isn't recovery, I don't know what is. Last night I did an hour of water aerobics and over an hour of yoga. This morning, tilt-training? 2 hours and 10 minutes. Holler! I was really light-headed for 30 minutes after, but still. I can't remember the last time I've lasted that long. I think we have reached a turning point in reconditioning. :) I still have some other symptoms, nausea, fatigue... I'm not magically "all better," but it's progress f'sho!

yay,
emma

Monday, July 27, 2009

Tilt-Training - Read This One

Tilt-training:
Thanks for your emails! I am amazed at my progress too! I feel like a TV pitchman, "I went from standing for seven minutes to over an hour...in just a week!" I'm not an expert, but this is how it was explained to me.

Stand against a wall for as long as you can, twice a day, every day. Do a little more each time. Being upright is often uncomfortable, if not totally miserable, for people with dysautonomia. But simply standing trains your heart and all of your body systems to recondition, to "reset."

For the first few tries, I stood against a wall until my symptoms became, shall we say, unbearable. But hang in there! It got a lot easier once I surpassed 20 minutes. I'm still tired by the end, but it's more due to back pain than fatigue. Yay! I'm able to accomplish more now during my tilt-trainings... keeping my mind and body busy doing chores. Don't forget to stay standing! :)


Check out this study: [Did I mention my mom deserves a degree in medical research?]

Tilt training: a new treatment for recurrent neurocardiogenic syncope and severe orthostatic intolerance.

Ector H, Reybrouck T, Heidb├╝chel H, Gewillig M, Van de Werf F.
Department of Cardiology, University Hospital Gasthuisberg, Leuven, Belgium. Hugo.Ector@med.kuleuven.ac.be

Medical treatment of neurocardiogenic syncope is insufficient in many cases. We have observed a therapeutic effect of repeated head-up tilt testing. Therefore, we have started a program of tilt training for heavily symptomatic patients. After hospital admission, they were tilted daily (60 degrees inclination) until syncope, or until a duration=20 of 45-90 minutes (90 sessions in 13 patients). The mean tilt tolerance, at the first diagnostic head-up tilt table test, was 22.3 minutes (st. dev. 10.9).

Before hospital discharge, 12/13 patients could sustain the full duration of tilt table testing without any symptom. In one patient syncope persisted. The patients were instructed to continue a program of daily tilt training at home, by standing against a wall for 30 minutes, one or two times per day. This resulted in a complete disappearance of syncope in all 13 patients.

**Orthostatic intolerance and the excessive autonomic reflex activity of neurocardiogenic syncope can be remedied by a program of continued tilt training, without the administration of drugs.

Cure OI without drugs?! As they say in the old country, AMAZINGK!

the cheese stands alone, my friends.
et :)

ps. lol. Today: Great morning, stood for an hour and 35 minutes! Woo! Afternoon was rough. Chest pain and fatigue. Everything's an experiment with the meds. Today we titrated up the Midodrine to 7.5 mg 3x/day. Also switched up the beta blockers -- 25 mg in the morning, 12.5 at noon and 12.5 in the afternoon, instead of taking half at night and half in the morning. We'll wait a few days and see if it helps improve my afternoons.

Sunday, July 26, 2009

Spider Solitaire

Forgive the fragments.

Fever down to normal range! Tilt-training: hour and 10 minutes yesterday morning. Awesome. So sore just from standing so much, I could barely swim. Need to stretch more. Making huge progress overall, though; was excited to see some friends last night. Then unexpected chest pain, palpitations, muscle cramps, nausea, etc. I had to miss out. Ugh so mad. I hate how unpredictable this is!

Last night I slept really well, and today I had a lot of energy. Even did laundry! First time in forever! But the last couple hours have been awful. Pain and foggy thinking. Bleearrgghh. Little memory "blips" too -- like going to pick something up, and realizing it's in my hand already.

Working through this, one day at a time. Encouraging overall, but it's still a struggle. I think my mom said it best: It's like putting together a jigsaw puzzle in midair. We're getting there.

bounce,
emma

Friday, July 24, 2009

Rollercoaster Tycoon

Hey! Things have been really up-and-down, but mostly up! Some stats just for fun:

Weds night, standing (feeling well): 112/59
Thurs morning, standing: 89/56
Thurs afternoon, lying down (feeling crummy): 118/68, HR 59
Thurs night, standing (feeling well): 94/57
Friday afternoon sitting up, 111/67

Kinda weird that my symptoms don't necessarily match up with my numbers.

Whenever my systolic BP breaks a hundred, it's like I've won the lottery.

My heartrate was getting kind of low, so I skipped the morning bb's yesterday. Felt sluggish for a while...but I had enough energy in the evening to sort through a bunch of stuff! (Good-bye, 29 t-shirts. Don't worry, there are still 37 of you left.) Took a whole dose last night and a half this morning. Doing really well today!

OMG the tilt-training is going GREAT!!!! Unbelievable progress. I started, what, six days ago? I could stand for seven minutes then. Fifty-seven minutes today. YES! So exciting.

Um. What else. I dunno. Too excited.

HIGH-FIVE FRIDAY!
emma

Wednesday, July 22, 2009

Treasure Mountain

Hola.
  • Tilt-training: 17 min! 22 min! 25 min! Yeaaaaahhhh!
  • Nauseous, foggy thinking, weird dreams, but overall doing well!
  • I have huge respect for anyone who wears compression/medical/surgical stockings.
  • High & Low for Systolic BP - 115 & 97. Not too shabby!
  • Finished Chronically Happy - a downer, but still some good advice. Starting When Bad Things Happen To Good People. A deep read, for sure.
And then Jimmy sold his car in less than an hour. Craigslist, say what!

AHH and Billy Elliot is coming to Chicago! That's right, all you other American cities. WE WON. Y'all can just wait your turn. Elton likes us best.

Olympics, puh-leez. Who needs 'em. We got Broadway!

chi-town,
emma

Monday, July 20, 2009

Six Months in the Blogosphere

6mos, my bloggie. What a journey! I'll try to do a recap soon. Here's what's happening today:

Not sleeping well. Very nauseous today, although everything else seems to be getting better. :) More energy, more focus. I got my compression stockings in the mail today, how exciting! They're really tight and REALLY thick. It hurts a little, but I'm sure I'll get used to it... especially if it helps my circulation! I feel like we've made so much progress lately! The fall semester for CLC starts in five weeks. Let's make it happen! Pleasepleaseplease!

Late afternoon was rough today; my pulse felt really slow. (It was. 53bpm.) I'd been doing well for a few hours, but suddenly I had to lie down. I felt like I could hardly keep my eyes open. But my BP was still okay (105/58), so I just rested. If that happens again I'll get some tea or coffee to try to boost my HR. Does this ever happen to you, POTS patients? Maybe I'm just adjusting to the increased Midodrine or the medical stockings.

Tilt-training - 8 min 45 sec; 10 min. Makes me dizzy and nauseous. Guess it's improving though, right?

Enjoy one of my favorite online videos: Magical Trevor!

confetti,
EMMAgical TREVOR

Sunday, July 19, 2009

Math Munchers

My most popular accessory is a blood pressure cuff. Talk about pizzazz.

Most recent stats:
  • lying down - 101/64 ......... 65 bpm
  • sitting - 105/67 ......... 67 bpm
  • standing - 98/61 ............ 74 bpm

The goal is to keep the first number (Systolic BP) over 100. Looks pretty good today! I've started the Tilt Training (standing up for as long as possible - critical element of reconditioning, says Dr. Kaplan). Stood for over seven minutes today before I got sweaty and lightheaded.

We've been gradually increasing the Midodrine. I took 10mg yesterday and 15 today. I think it's helping; swimming today felt easier. I expect to be very sore tomorrow. Compression stockings soon! Chyea.

trendy,

et

Friday, July 17, 2009

Tetris

Morning: pretty good! Chores etc. I am so happy when I am able to do stuff, even small stuff.

Afternoon: what happened? So fatigued all of a sudden.

SYTYCD: Ellen DeGeneres is guest hosting next week. Way cool.

Overall, I'm really encouraged. Today's Day 5 of the Midodrine ... let's hope the improvement continues!

arcade games,
et

Thursday, July 16, 2009

Oregon Trail

More energy than average today! Read, stretched, did some chores. Things are still very unpredictable, but the good hours were productive! AHH and my heart rate got down to 57 bpm last night! 57! That is SO low for me! And my blood pressure's pretty close to normal (at the moment I'm about 90/60). Good news I think!

"Somebody's poisoned the waterhole!"
emma

Wednesday, July 15, 2009

Freddi Fish

Back to the computer game titles for July. :)

Water aerobics yesterday. It's hard on my heart, but we're making progress I think.

Blood pressure's doing good. Eyes are itchy. Fatigue, chest pain, palpitations. Ugh. Just getting through each day.

I love you, Conant Alumni. You are too cool for school!

rah rah,
emma

Monday, July 13, 2009

Midodrine, Take 2

So it's Day 1 of Take 2 ... but I take 3. lolz. My brain feels fuzzy. Groggy, like I'm on cold medicine or something. I'm on 7.5 mg a day (2.5 mg 3x/day) of the Midodrine. Keeping everything else the same for now. My blood pressure was low this morning -- 71/47 when standing. Drank some coffee to boost it.

Sooo yeah. Resting a lot. Stretching when I can. Keeping track of my meds. Taking my blood pressure and heart rate a few times a day. Saving all energy for my pool workouts. It's a full-time job! I'm a little nervous to go back on Midodrine this week... hoping for better results this time!

"Cash Cab" is my new favorite show! I swear, every-other question is a term from US History. :)

Domino Theory!
et

Sunday, July 12, 2009

ANDY KAPLAN!

ANDY KAPLAN TREATS POTS!
ANDY KAPLAN TREATS POTS!
Andy Kaplan speaks my language, brutha! AHH!!

Once upon a time, yesterday, my mom went to her high school reunion. One cool dude, Andy Kaplan, currently lives in Arizona. He's a heart surgeon. But WHOA!!! AHH!!! Holy small world of major autonomic dysfunction, Batman, HE TREATS POTS!!!!

Andy Kaplan, that is. Not Batman.

AHHHHHHHHH this is so great! Can you tell I'm excited? BIG DEAL!! Almost NO one has even HEARD of POTS...and long-lost high school buddy comes out of the woodwork and is just full of advice! :) Dr. K is so so so SOOOO much more knowledgeable (and helpful!) than the current (stupid) doctor. I can't even believe it! I'm so grateful to have his insight! My mom said it was so amazing talking to him...first person EVER to really know what the heck we're talking about.

Andy's Thoughts:
  • Try the Midodrine again -- this time 3x a day
  • Fluorinef 2x/day
  • Keep swimming
  • Wear compression stockings. Even though I don't have pooling, it'll help my bloodflow.
  • "Tilt-training" -- stand up against a wall every day, a little more each time. Says it's crucial to reconditioning and "resetting" the body's functions.
More to come, I'm sure. :)

Swam today. Tired. (From the other day... *Minor correction* ... apparently 32 laps = 1 mile ... not 32 lengths. Oops. Ha. Well, I swam half a mile!)

HIGH-FIVE, ANDY KAPLAN!
emma

Saturday, July 11, 2009

Where in the USA is Carmen San Diego?

I am sore. Stretching a lot. Bad palpitations.

aloha,
emma

Thursday, July 9, 2009

Thinkin Things 3

Yesterday was not bad! Today was not so bad either! I swam again! A mile? I think? AHHH yay. I think the water is really helping my circulation. Plus the endorphins (and the dosage changes) are making me really happy. My brain feels, like, awake. weeeee!

Always emphasizing the "ups & downs" -- I'm not cured. It's a long process. But I love the good hours!

SYTYCD: I'm going to miss Phillip Chbeeb's moves. One of my favorite dances:
http://www.youtube.com/watch?v=cxy9-QasmcI&feature=related

swim swim swim,
emma

Tuesday, July 7, 2009

Zoombinis

The last few days have been miserable. Very frustrated with the Midodrine. My numbers (esp heart rate) look better than a week ago, but my symptoms are SO much worse. The fatigue is unbearable. [Thoughts, fellow POTS patients?]

Stupid doctor hasn't called us back, so we're taking matters into our own hands. Stopping the Midodrine and doubling the Atenolol (beta blockers) to 25mg twice a day. Still a relatively low dose. We'll see what happens. Please good things!!

Swam today! I am EXHAUSTED out of my mind. I was surprised I lasted as long as I did. My heart is a tired little champ. :)

water in my ears,
emma

Sunday, July 5, 2009

Minesweeper

Blood pressure's not so low today, yay. Still barely functioning. Trouble sleeping, pain, etc. Thinking feels really difficult.

Out of all the Michael Jackson hype, I think this is the funniest video yet: http://www.youtube.com/watch?v=RJDLio9Th_Q

saxophones,
emma

Saturday, July 4, 2009

Backyard Baseball

Crummy day. Eyes/ears feel funny. Heart hurts a lot. Thinking is foggy. Lying down all the time.

It's the 4th of July. Today my dad hung up the Declaration of Independence in the kitchen. Oh, the patriotism! Some things never change!

from sea to shining sea,
emma

Friday, July 3, 2009

SimTower

Takin' my stats.
  • Lying down - HR 62bpm, BP 85/54
  • Sitting up - HR 65, BP 80/50
  • Standing - HR 99, BP 75/57

Low blood pressure sucks. Dizzy, exhausted.

Have a fun and safe holiday weekend!

cue the Sousa marches,

et

Thursday, July 2, 2009

Spy Fox

I have the most entertaining dreams EVER. Last night I dreamt there was a new planet called BarackObama. Being a brand-new planet, it was dark and devoid of life. Not a single tourist trap. Lousy idea for a vacation! *Takes spaceship home.* Then I joined a jazz combo. :)

Minor improvements today, still staying off my feet as much as I can. Heartache, headache, fatigued.

Ahh! I can't believe I forgot to mention, I finally reached the epilogue of my first "sick lit" book the other day. Took me long enough; I'd read just a couple pages at a time since December. His was different situation than mine, of course, but I related to the author's struggle to keep positive. He was 24 when he suddenly developed cancer and a brain tumor. Years later, he overcame both.

Best Part: In the last paragraph, he mentioned speaking at Snowball!! Totally made my day!

warm fuzzies,
emma

P.S. Happy anniversary to my house. No matter the nail polish stains on the carpet; no matter all the endangered plants we accidently kill; no matter how many raccoons live in the ceiling of the garage and hide out in the car and terrify my sister on the way to school; it's still our house. Well... ours or the raccoon's. =]

Wednesday, July 1, 2009

Snood

It's July? Crazy. Post titles this month will feature my favorite childhood computer games. {Nerd alert}

Officially "Day 1" of the Midodrine, feeling very weak. Taking it easy.

Nice work today, NBC Nightly News, displaying a silhouette of Illinois backwards. I know our state is pretty messed up, but please. Show some respect. Look at a map.

love,
et

Tuesday, June 30, 2009

Thunder Road - Bruce Springsteen

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

rest,
et

Monday, June 29, 2009

Hey Ya - Outkast

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

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

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

Sunday, June 28, 2009

Hey Jealousy - Gin Blossoms

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

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

strawberries,
emma

Saturday, June 27, 2009

Hey Juliet - LMNT

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

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

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

emma

Friday, June 26, 2009

Hey Leonardo - Blessid Union of Souls

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

Resting up for a wedding! :) Gorgeous weather!

love and fancy clothes,
et

Wednesday, June 24, 2009

New Shoes - Paolo Nutini

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

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

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

stay cool!
et

Tuesday, June 23, 2009

All Star - Smash Mouth

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

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

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

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

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

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

bahaha. I gotta stop doing that.

peace out,
emma

Monday, June 22, 2009

Say My Name - Destiny's Child

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

sleepy sleep,
et

Sunday, June 21, 2009

Saturday in the Park - Chicago

Quickie update.

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

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

Happy Dad's Day!
em

Friday, June 19, 2009

Here It Goes Again - OK Go

I LOVE JERSEY BOYS!

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

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

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

love,
emma

Thursday, June 18, 2009

Don't Stop Believing - Journey

Oh heavens. Too much to write.

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

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

But it was still an enjoyable evening! Highlights:
  • Laughing pins crack me up.
  • FREE CANDY.
  • Sweet Home Chicago!
  • Video intro - Ellen runs all over the city.
  • Ellen waved directly at us! :D
  • She TOTALLY aimed that prize-winning tennis ball at me. The guy next to us got it though. Psh. As if that matters. I know she meant it for me!
  • I was picked to ask a question. And it was a good question. But they ran out of time. Yes, they ran out of time after six people were like, "OMIGAWD! Ellen! hihihi...umm...we have the same birthday! Will you have a birthday party with me?" Like what the heck kind of waste of a question is that. Six questions about birthdays. Doy, people. Missing the point.
  • Got to sit in the front row after the show...pretending we'd snagged a tennis ball. The pair next to us were kind enough to adopt us for the moment. Haha. We pull bits like this all the time.
  • I got a picture with Nick Cannon! [DJ, main guy from Drumline, etc]
  • Next time we will meet Ellen, I'm tellin ya!
Last night's tix were for my mom's birthday, surprise from my dad ...and tonight's Jersey Boy tickets are for Father's Day, surprise from my mom! Two big nights in a row? What a coincidence! I am excited, but resting resting resting! Plus we've got my next Dr appt tomorrow morning. PHEW!

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

Keepin my feet up and my spirits high,
emma

The Sign - Ace of Base

From Tuesday - I guess it didn't post?

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

Resting up like nobody's business!
emma

Monday, June 15, 2009

Mr. Jones - Counting Crows

So, so tired. Silly eyes, silly body.

lemonade,
emma

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

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

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

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

pffff haha!

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

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

Good night! I'll be here all week!

Sunday, June 14, 2009

Listen to the Music - The Doobie Brothers

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

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

Get it? Amazing? Emma-zing? Haha! *Wipes tears from eyes* I am just SO funny! And it's like a hundred jokes in one, since it comes with the promise of infinite related puns. For instance, ahem,
  • As magician: The EMMAzing Emma!
  • As contortionist: She'll shock and EMMAze!
  • As author specializing in corny jokes: EMMAzing Maize!
Sorry to torture. Couldn't resist. :)

I feel lousy. Tomorrow is another day!

love & whole grains,
et

Saturday, June 13, 2009

Breakfast at Tiffany's - Deep Blue Something

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

hurry hurry please,
emma

Friday, June 12, 2009

Bring Me To Life - Evanescence

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

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

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

love,
et

Wednesday, June 10, 2009

Human - The Killers

SYTYCD is on tonight! Yes!

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

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

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

Tuesday, June 9, 2009

Believe - Cher

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

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

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

In a lot of pain. Frustrating.

sleep well,
et

Monday, June 8, 2009

Poker Face - Lady GaGa

Tony Tony Tony! Ahh!

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

Observations:
  • Performances from Hair and Billy Elliot were outstanding!
  • West Side Story is timeless. Mambo!
  • Liza Minnelli needs HELP.
  • When that guy hit his head on the scenery [broke his nose!] -- terrible, I know -- but it was so funny, I just about lost it.
  • People with British accents are about 10 times more likely to win a Tony...or any American award for that matter. They just sound so delightful.
This morning I had SO much energy! I'm not sure how to describe it; again, I'm trying to emphasize that I'm not better yet. Once in a while I just get a couple hours where I feel really hyped up. Just part of my up-and-down cycle I guess. Crashed pretty bad this afternoon, but it was nice while it lasted.

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

let the sun shine in,
emma

Sunday, June 7, 2009

Start the Commotion - The Wiseguys

Tony Awards tonight! Resting up.

My dear muscles, please stop spazzing out. Kthanx.

ba ba baaa,
et

Friday, June 5, 2009

Steal My Sunshine - Len

Still breathing.

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

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

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

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

l-a-t-e-r,
emma

Thursday, June 4, 2009

All The Small Things - blink 182

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

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

Calcium, Magnesium, Potassium, Sodium. Yum?

catch ya on the flipside,
emma

Wednesday, June 3, 2009

Streecorner Symphony - Rob Thomas

Migraines, trouble focusing, pain, etc.

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

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


Juicy Juice Immunity. Because your kid is gross.

night,
et

Tuesday, June 2, 2009

Brown-Eyed Girl - Van Morrison

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

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

Therein lies your answer. :P

<3,
et

Monday, June 1, 2009

No Scrubs - TLC

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

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

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

Someday,
emma

Sunday, May 31, 2009

Strawberry

I like lyrical/contemporary dance probably too much for my own good.
http://www.youtube.com/watch?v=7mZWP1z7Yxc&feature=related

The song she chose is quickly becoming one of my favorites. I'm not a huge fan of the picture slideshow, but the melody, voicing, and lyrics are positively captivating. Too good to pass up.
http://www.youtube.com/watch?v=67xr_KKPTHE&feature=related

"This is my winter song.
December never felt so wrong,
cause you're not where you belong...

"I still believe in summer days.
The seasons always change
and life will find a way."

Too, too tired.

we will start again,
et

p.s. AH! I forgot! Evan K. is terrific. Maybe the next Gene Kelly? http://www.youtube.com/watch?v=JiYfZWY0znc

Saturday, May 30, 2009

Oh I Wish...

[HTML, why the underline?]

You should've seen the reactions we got. Ohhh man. I think I bust something, I was laughing so hard.















The Land of the Free...and the Home of the Wienermobile.

video

^ The video! ^

Savor the Moment,
Relish the Pun.

"our other car is in the shop,"
emma :)

Thursday, May 28, 2009

AmeriCone Dream

The Stephen Colbert ice cream!

I am totally exhausted. The Wienermobile was absolutely hysterical. More later.

Happy birthday to my brother Jimmy! Now our ages are all divisible by 3. Yay! Once we were all prime numbers. I think that was the best. :)

love
em

Wednesday, May 27, 2009

Moose Tracks

My Good People,

I am writing you in my despair. Beware! Read the carton carefully! Whether you go for the single-serve, pint-size, or, my personal favorite, the 10-gallon tub, the industry is out to get us. Sneaky people, I tell ya. So be on the lookout: "Frozen Dairy Dessert" is posing as real ice cream!! NO!! Truly this is an out-and-out crime. If you're a true-blooded American patriot, you will protest the horror. THE HORROR!

So yeah. Popsicle sales are down. Just thought I'd give 'em a boost.

But in all seriousness, it's all frozen yogurt. Yogurt! Who are you kidding? You think you could fool me? I'm a PURIST!

Well I crack myself up anyway. The Daily Show and The Colbert Report are on vacation this week. Just doin' my part to fill the void. ;)

Tomorrow my family and I will be picking up my sister after school...decked out in the Oscar Mayer Wienermobile. Check it, yo. As if we weren't weird enough.

Today: super tired. Stretched. Doing my best to get beyond grief and move on to, well, whatever's next. I'm adding Political Satirist to my long list of career options. Number 143, right there between International Pop Sensation and Professional Water-Wings Tester.

And just because I know you're curious, Number 1 is Short Film Critic. Because who would want to sit through all the long boring ones? I figure the workday would be a snap!

pfff haha. sorry.

sleep,
et

Tuesday, May 26, 2009

Birthday Cake Remix

Hi. Howdy. Where to begin.

I love your comments, I love seeing your name, or maybe "anonymous," or maybe "anonymous" + signing your name. The combinations are endless! You should know, though, that I have been getting some spam (junk mail) comments lately, especially ads for herbal supplements. I delete these comments, but yesterday I made an error. My apologies to a reader whose suggestion was legitimate!

I'm not a blog expert by any means. I'm not exactly sure how to "subscribe" or "follow" without a Gmail account. I don't know how to post comments privately.

BUT I do know how best to reach me -- the magic of email!

emmatrevor@gmail.com

So we're all on the same page. Kewl.

News: 30 min of the stationary bike, tons of stretching, sore. Bundles of back pain last night. Involuntary muscle contractions, chest pain, heart palpitations. My eyes are having trouble focusing. So yup, the usual. One day at a time.

Happy birthday to my big brother Matt!
*kazoo!*
em

Monday, May 25, 2009

Peppermint Patty

Weight's been stable for a week. Yay.
Feel like crap. Ugh.
My bruise is now green and purple. Cool! Sorta.

You know, I never expected to be best friends with everyone. But I really wish my digestive system would reconsider our relationship. :(

What best represents the true beauty of summer? Sugar Ray on a transistor radio.

the 90s,
emma

Sunday, May 24, 2009

Snickers Ice Cream

Biked 35 minutes yesterday, 20 minutes today, plus a couple hours of stretching. Sore. I'm working really, really hard at this. So why has my condition plummeted in the last 24 hours? Ugh. I did not sign up for this! None of us signed up for this! Look on every bulletin board in all the world, I can tell you we did not sign up for this.

New musculo-skeletal pain in my forearms. What the heck. I don't get it.

The good news is my dad got me a new ice pack...and it's enormous! We call it the bullet-proof vest. Helps my pain a little.

One of my favorite "So You Think You Can Dance" auditions:
http://www.youtube.com/watch?v=bVJl2X2BNNk

gonna be back in the arts someday,
emma

Friday, May 22, 2009

Cantaloupe Sorbet

The last few days have been significantly better than normal! Yay! Still not "good," but I'm definitely open to any sign of improvement. It's not clear what change I've made (if any) is responsible. Hm. Perhaps the medieval docs had it right all along: just get all your evil blood sucked out, and you're good to go!

Cleared up a bunch more of my college stuff today. Do I really have that many music theory textbooks? Absurd!

American Idol is over, and I'm already hooked on "So You Think You Can Dance." Well that and pretty much anything newsy. Arts freak and borderline political junkie. The more things change, the more they stay the same?

happy memorial day weekend!
emma

Thursday, May 21, 2009

Literature, Kids.

I know I've been talking about some of these pieces for a while - time to finally share them! Many thanks to my high school English department. :)

"The Right to Fail," an essay by William K. Zinsser (1970).

Must we conform to a singular measure of success in our society? Perhaps the dropout can use a fresh perspective to define fulfullment on his own terms. "Magna Cum Laude" alone is far too narrow.
"http://www6.district125.k12.il.us/~rtompson/TheRightToFail.pdf"


Wit, a play by Margaret Edson (1999).

My situation is certainly different than the main character's, but I can empathize with Dr. Bearing's frustrating medical encounters. Bedside-manner is so underrated!
http://www.amazon.com/exec/obidos/ASIN/1854594583/bookrags#reader


"my dreams, my works must wait till after hell," a poem by Gwendolyn Brooks (1963).

Special thanks to my bud Aud who brought this poem to my attention. Her words are tragic but beautiful. Certain lines echo endlessly in my head. "none can tell me any word but Wait." But I'll store my dreams and keep my works as long as necessary. Someday I'll be able to pursue them again.
http://www.poetryfoundation.org/archive/poem.html?id=172087


Thoughts? Other recommedations?

In other news, I had all that blood drawn a couple days ago, and now I have a huge blue bruise on my arm!

You shoulda seen the seen the other guy,
emtrev

Wednesday, May 20, 2009

Drumstick

whoa.

k, so, this morning I woke up...and I felt halfway decent! So I thought I'd try a few minutes on the stationary bike...and 20 minutes later, I still felt decent! Revolutionary! (Oh, I am SO full of puns.)

And then I was totally hyper for almost 2 hours! Aah! I cleaned my room a little! I unpacked a little! I carried my own laundry all the way downstairs! It kinda felt I'd been injected with 10 pots of coffee! I almost felt like my old self. Well, maybe my old self on a crazy caffeine jolt. (Plus nausea, some abdominal pain, eye dryness and oversensitivity to light and sound.)

Then the clock struck 11:15 and I crashed. Bummer. It was like the wind was knocked out of me. Spent the next 3 hours in bed with all the old symptoms. :(

A few more Dr's appt highlights:

  • Neck trauma may or may not have led to POTS
  • No sodium tablets or magnesium supplements for now; again, trying to add naturally in diet
  • Many POTS patients find the transition into summer their worst time of year.

Best part about today: I found my collection of drawings saved from the kids I used to babysit. :D I'm so glad I labeled their priceless works of art with the original titles. One five-year-old's meticulous depiction of squares, triangles, and circles is aptly named "Definitely Not Shapes." I also like the scribble one called "The Babysitter Sleeping."

hahaha!

zzz,
et

Tuesday, May 19, 2009

POTS Specialist

Totally exhausted, but I gotta get something down before I forget. Or pass out.

Dr. Gilden is very knowledgeable about POTS & autonomic dysfunction. She also said "Only time will tell" about a dozen times. Yeah. Ouch.

Highlights:

(HTML, you stink. Where is the bullet point button?)

  • 10 vials of blood for a panel of 14 tests. man oh man. PLEASE no more fasting!
  • 12 blood pressure tests. A little lower than at Mayo, but still around 100/60 standing, so not too bad. Heart-rate jumped from 79 sitting to 109 standing. Gosh dern!
  • THE most awkward EKG...like, ever. =P
  • Will be doing an at-home 3-day blood sugar monitor soon.
  • Getting off iron supplement and potassium supplement; might be contributing to my upset stomach. Will try to replace both in my diet.
  • No explanation for 3-month fever. Gah.
  • Emphasis on exercise. So easy for a healthy person to say. I'm trying.

We'll see her in a week or two to discuss the test results. Might put me on Midodrine. I'm a little confused because she says I have orthostatic hypotension? I was really out of it, I don't know, whatever, we'll talk about it.

Gonna go rest now.

hospital gowns mean hospital FROWNS!
emma

Monday, May 18, 2009

Chunky Monkey

Hello art lovers. I am resting up for my medical marathon tomorrow! I don't know the exact itinerary, but we will be meeting Dr. Janice Gilden, an endocrinologist who lists herself as a POTS specialist. (She is one of just two doctors in the state of Illinois who is familiar enough with POTS to treat it. IL's other doc doesn't see patients 18 and over. Yay for Dr. G! Fighting ageism every step of the way! ha!) Since I'm a new patient at this hospital, they will be running a gajillion tests. Our appointment is 9am - 5pm. Phew!

We're hoping Dr. Gilden will offer some new insight and maybe change my meds. However we also know they might not have much to suggest. We'll see how it goes. Thanks for your thoughts and prayers!

Someday I will own a chain of inspirational dry cleaners, and it shall be called...PRESS ON!

haha,
emma

Sunday, May 17, 2009

A Little History

My stomach is speaking whale. [See: mmmrrrrwaaaaaalllahhhh sadface]

I can barely tolerate crackers and applesauce. No fun. Just 36 hours til the new doc!

::::::::

I'm updating our records for the big Dr appointment downtown on Tuesday.

1996, age 5, necrotizing faciitis along with chicken pox. Probably no relation to POTS.

August 2006, age 15. Possibly an episode of POTS; I developed a mysterious "virus" / circulation problem while working at an outdoor day camp. During some 100+ degree days, I became very dizzy, nauseous, and achy. They suspected dehydration and sent me home with a pack of Gatorade. I started getting frequent, painful charlie horses in my calves and feet. I had to quit my job; I could barely walk. For three weeks I suffered from these weird symptoms, which vanished a couple days before school started up again. Doctors never found an explanation for my illness. Maybe a heat-induced case of POTS?

July 2008, age 17. Fell off a swing, landed on my head. No symptoms beyond immediate headache. August - happily started school!

September '08, 10 Sept - Donated blood for the first time; bad reaction. Felt weak and nauseous for days. Probably due to low blood volume -- common in POTS patients. 9/26 - went on a student retreat to a rural area. Abdominal pain and nausea started soon after.

October '08, age 17/18. Digestive symptoms worsened, extreme fatigue set it. Suddenly needed a lot of sleep. Chest pain, palpitations, migraines became more frequent towards the end of the month. Trouble sleeping. Muscle weakness, back pain, neck pain. All medical tests at school health center came back negative.

November '08, age 18. Freaky bad everything. Tremors, short of breath. New eye and ear problems. In a lot of pain, could hardly get out of bed. Came home from school, all the tests at the Dr's came back normal. Desperate for an answer (and an explanation for my absences), diagnosed with anxiety/depression, started Paxil.

December '08, BAD reaction to Paxil. Clearly anxiety was an effect of my physical symptoms, not the cause of them. [Many POTS patients are misdiagnosed with anxiety disorders. Request a tilt-table test to rule out POTS!] Prescribed Focalin (an ADHD drug - to help boost my energy). Worst day ever - stopped Focalin. More tests returned normal. Cervical spine MRI showed four protruding discs in my neck, likely due to my fall last summer. Proceeded to receive chiropractic treatment. Tried a few chronic fatigue supplements. No improvement, officially left U of I.

January 2009. Found a more holisitc chiropractor, very promising. Sadly, his treatments didn't fix me either. While weaning off the Paxil, I fainted. Unable to begin classes at community college. Ouch. Keep on keepin' on.

February '09, met an ignorant neurologist. Saw a rheumatologist. Zillions more tests. Found everything normal, except my inflammation numbers were a little high. Put on Prednisone.

March '09. Weaned off Prednisone. Started taking Ambien. Heard about POTS. Orthostatic intolerance was confirmed, but my tilt-table test was deemed normal. My symptoms made a turn for the worse overnight, and we were lucky enough to land a cancellation at Mayo Clinic (Rochester, MN). My mom and I were there for a week, testing for everything imaginable. I was diagnosed with POTS; all else normal.

April '09. Started Beta blockers (Atenolol) and Florinef. Increased fluids and salt intake. Struggled to get adjusted. Made my blog public.

May '09. Still suffering from oodles of symptoms. Lost 15 pounds in about 2 weeks. Yikes. New doctor soon!!!!!

Saturday, May 16, 2009

Oreo

Thoughts feel fuzzy. Heart is way too hyperactive. Rest rest rest.

love,
emma

Friday, May 15, 2009

One Sweet Whirled

Ahh yes! A couple good hours today! Sorting through my U of I stuff little by little. The more I think about it, the more I know I'll go back. I'll return when I'm ready, when I'm healthy. :) In the meantime...maybe I should mail back the music I accidentally stole from Women's Glee? Oops. Funny I didn't take any music from Black Chorus...because we learn everything by rote!

Breathing, speaking, writing, singing, learning, living. That's the goal.

gotta rest. more tomorrow.
emma

Thursday, May 14, 2009

Catching Up

Doing a little bit better today. Taking advantage of it. Been meaning to write this one for a while.

Most people have no idea what to say to someone with POTS or another chronic illness.

My Top 3:
  1. How are you feeling?
  2. I'm thinking of you. / My heart goes out to you. / My prayers are with you. / etc
  3. That sucks!
And I'm totally serious about saying it sucks. Awkward silence? Not sure what to say? "This just sucks." See? =)

My other advice: stay away from the phrase, "I know exactly how you feel." Hm, yeah. Unless you have or have had POTS, prob not so much.

Thanks for ALL your comments! Okee, back to our regularly scheduled program.

Slept SO much better last night, seeing improvement today. One thing I should mention, just for my fellow POTS patients, is that I've lost a considerable amount of weight in the last week or so. I don't think we should be worried [yet], as I had gained a lot on Prednisone most recently. I'm now about where I was when I left for school last August. Just something else to ask Dr. Gilden about on Tuesday.

Yesterday my sister had her choir concert! And I made it through 30 minutes of it! She was so terrific, lemme tell ya. "Je le Vous Diray" was flawless! I was so glad I was able to make it, even if I had to go home terribly early. Half an hour of sitting up, heart rate jumped to about 105 bpm. Super dizzy, hard to keep my eyes open. Bleh.

But Julia is awesome!

Go Cubs Go!
emma

Wednesday, May 13, 2009

Chocolate Chip Cookie Dough

I don't even want to think about yesterday. Bad news bears. Same as Monday plus major cramping in my jaw, hands, and calves.

Free advice:
If you've been on Ambien for a couple months, don't be stupid and try going back to Advil PM for a night. Awful, awful, stupid me. Freaky tremors, super dizzy, vertigo, nauseous, and I felt like I couldn't breathe. I think I ended up getting to sleep for a couple hours. Maybe. Ugh. Stupid.

**Note: It was probably a reaction to the other medications I'm on. I don't mean to give OTC sleep aids a bad name or anything.

resting up,
emma

Monday, May 11, 2009

Neapolitan

Woke up at 4:30am. Why can't I sleep through the night?

Spent nearly the entire day in bed again. Had a good hour or so, but once I expend my limited energy, I can hardly sit up. Music in my room is a comfort. I'm listening to John Mayer's album "Continuum" on repeat. Just hit the 40th playing in 3 days. Good thing I like this CD! :)

No one should be in this much pain. Could come in handy if I ever pursue a career as a blues lyricist.

"Pain throws your heart to the ground. /... No, it won't all go the way / it should.
But I know the heart of life is good."

in repair,
emma

Sunday, May 10, 2009

Peanut Butter and Chocolate

Happy Day of the Mama! And a belated Very Snappy Smurf-Day to my lil sis -- 15?! Golly!

Really bad day again yesterday. :( Stayed in bed pretty much the entire day. Migraines, nausea, dizzy, heart palpitations to no end. Sitting up is a challenge. So frustrating. Just keep breathing.

no drama mama llama,
et =]

Friday, May 8, 2009

Vanilla Heath Bar Crunch

Really haven't been sleeping well the last few nights. Today I woke up around five. Breathing is still difficult; I feel like I'm gasping for air.

Ten days until we head downtown to see the new doc!

happy friday,
emma

Thursday, May 7, 2009

Rainbow Sherbert

Ah yes...well perhaps you've heard by now my heroic tale, how I single-handedly saved our house and livelihood from certain peril. The rumors are true. A thunderstorm came on suddenly! The sump pump was unplugged! And I alone had the opposable thumbs necessary to rescue the basement from a terribly unpleasant fate.

*Brushes dust off shoulders*

Yup. All in a day's work. Special thanks to my mom...and her urgent call from the office. ;)

Doing okay today, really sore from stretching. Nausea and eyelid twitching, heart palpitations, chest pain. A gorgeous day outside, but way too much for my silly heat intolerance. Ten minutes on the porch = 2 hours in bed recovering. Not a perfect equation, but something like that.

Arrite, that's enough. One month until the Tony Awards! Enjoy this recording from the new musical "Next to Normal" - Jennifer Damiano, 16, is up for Best Featured Actress. You might recognize her voice from Spring Awakening. Gotta admit, teen angst suits her!

http://www.youtube.com/watch?v=6ZjQWv-uNT8&feature=related

More clips to come,
emma

Tuesday, May 5, 2009

Jamocha Almond Fudge

Really up-and-down today. Able to do a few stretches, so that's good. Otherwise, headaches, lightheaded, fever's up, chest pain, suddenly tired.

Tomorrow I hope to finish packing up my college stuff to put in the basement. :( Everything's just been sitting in the hallway in boxes for a few months. Such big dreams, so short lived.

I probably sound really dramatic. Sorry. Just keeping a record for my book. ;)

Okay, funny story! Last night I dreamt that Stacy and Clinton (from "What Not to Wear") were my high school gym teachers, except class was held in my junior high dance studio(?). Anyway, I convinced them that instead of kickball we should play "Throw-Ice-Cream-at-the-Teachers." Haha, evil student minds prevail yet again!

quick before it melts,
emma

Sunday, May 3, 2009

Mint Chocolate Chip

Trying to more accurately describe my heart palpitations. Yesterday: fierce, vicious, unrelenting, that sort of thing. I once again put off getting my hair cut, in hopes to rest up for a family gathering.

I love my family. But it's amazing how easily people equate "looking well" with "doing well." I'm not faulting my family specifically -- however frustrating, it is quite natural. Last night I excused myself about four times to go lie down, and, maybe I'm wrong, but I sensed surprise and even judgment in the room.

"She's well enough to come, but she can't sit for 20 minutes and have a conversation?" I imagine them thinking. "She looks fine to me."*

Doy. I may look about the same as a year ago, but lemme tell ya, I'm not the same. My body has a lot of trouble with basic processes that we take for granted. I don't function very well. Today I had a really good half-hour. I put away all my laundry and folded some socks - a big deal for me. To have 30 minutes where my symptoms are somewhat under control, this is a big deal.

It's really common for people to try to minimize my illness by saying, "Well everybody's got their good days and their bad days." Thanks for your optimism, really, but it's not like that.

My mom is emphatic. "No. She's severely limited, all day every day. She can't go to school. She can't drive. Her life has been turned upside-down! Every day is a bad day."

Might sound harsh, but it's true. POTS is my reality, and Level 3 / Grade 3 should be taken seriously. Not everyone can see or accept that. But a lot of you ARE very understanding, so thank you. :)

the ice cream truck just drove by!!
emma

*Note: I can't read minds.