Monday, March 30, 2009

Miracle Flakes of HAPPY DIAGNOSIS TO ME!!!!!

That's what I would name my cereal.

AHH! Definitive diagnosis!!! Six months of trying to sort this out, and at long last! Proof we're not crazy!!

Today I was formally, officially, once-and-for-all *diagnosed!* with a condition called POTS -- (Postural Orthostatic Tachycardia Syndrome). Whenever I stand up, it's like a healthy person running in place. My resting (lying down) heart rate lies between 85-115 beats per minute, while yours is probably around 60. When I remain standing for as little as 3 minutes, my heart rate jumps to 120-155 bpm...way too high! Luckily my blood pressure (after lots of testing) averages out to be relatively stable, which is why I haven't fainted as often as other POTS patients, making my diagnosis even more elusive.

To learn more about POTS, please visit some of the sites and videos I've posted on the the right-hand column. I'm sure I'll be writing more about my personal experiences in the future.

For right now, my mom and I are, somewhat ashamedly, super ecstatic to have this huge burden (of finding a diagnosis) lifted off our shoulders. It's truly been an uphill climb, dealing with so many doctors who accuse us both of being hypochondriacs, and the fact that POTS has only been identified in the last 15 years. Most doctors don't know anything about it.

>>Final Report: Autonomic Reflex Screen
"Conclusion of 3/27/09 Tilt Table Test"
Clinical problem: Autonomic disorder, fatigue, tachycardia

Abnormal study. There was *significant orthostatic tachycardia* on tilt-up as can be seen in POTS, deconditioning/dehydration, anxiety, and other hyperadrenergic states.

Heart rate increment was *excessive!!* and patient developed weakness, trembling, dizziness, crying toward end of head-up tilt. (Note from me: and this was only 10 minutes. The one at our local hospital was 40 minutes! It's incomprehensible that that one was pronounced "normal.")

Breathing test, normal. Sweat test, reduced in the forearm, normal everywhere else.

  • Supine, 94 bpm, 118/64
  • 1 minute standing, 120 bpm, 110/82
  • 5 min, 136 bpm, 100/70
  • 10 min, 136 bpm, 104/72


Anyway, HALLELUJAH! The search is over! We're doing some more tests tomorrow: blood work, thermo-something-sweat test (will help determine how to approach exercise), ultrasound of my abdomen, and a couple more consultations...including one with our go-to guy. Looking forward to getting home certainly by Wednesday and treating this diagnosis (yippee!) full-time.

Praiseeeee God!!!!!

emma :D

Sunday, March 29, 2009


How could I forget?! This one goes out to my future roomie. :)

So the good thing about Dysautonomia is that most people get better with time. The less-fantastic fact is that we don't know how long my bout might last...a couple months or a couple years. But my mom is super optimistic -- she's gone ahead and renewed her Illini football tickets. I'm hoping against hope to be able to return to school in the fall. I'm bummed that I just got an email saying *all* my U of I information will be deleted in about 2 weeks (lol they must've realized I found that loophole and reviewed all the honors essays >.< ) ... but I did receive a confirmation email for my housing for this fall! Focusing on the positive.


The maid service at the hotel, day by day, has been eating my chocolate cake in our mini-fridge. This is not a joke. Mom is censoring me from printing the rest of the story because I am very tired and punchy, and she does not wish you all to think me entirely delirious.

Tomorrow I have 7 appointments at Mayo -- 7:15am to 5:15pm. Blood tests, dermatology consult, neurology consult, Holter monitor, just to name a few. Thanks for your thoughts and prayers!

love and chocolate sprinkles,

Saturday, March 28, 2009

Rice Krispie Treat Cereal

Fo' real, this cereal was the best! I don't know who had the idea of miniaturizing dessert items, putting them in a bowl, and calling it "part of this complete breakfast," but I think s/he deserves a pat on the back. Breakfast is beautiful. :)

I really wanted to use today to reply to everyone's comments, but I'm so wiped out. Been resting in bed for about 6 hours, palpitations just now calming down a bit. Hope to have the energy tomorrow.

Mom's been researching like crazy to learn more about the conditions they're testing me for. Not to jump the gun, but we're getting more confident that this is some form of Dysautonomia, even if it's not POTS. I show all the symptoms of IST -- Inappropriate Sinus Tachycardia.

I've posted a couple new sites -- they do a great job of explaining Dysautonomia.

until tomorrow,

Friday, March 27, 2009

Golden Crisp - Part 2

(Trying to split up the posts so they won't be so long.)

It was a long wait for the cardiologist, but I think it was well worth our while. What a terrific person, great listener, obviously very intelligent...and a British accent to boot! He listened to everything from the beginning, read through all my files, and had so much to say. First off, test results!
  • Blood test checking liver enzyme - slightly high. Follow-up tests to come, but cardio-man says it's just a precaution.
  • All other blood tests, normal (They didn't release what they'd been looking for.)
  • Chest x-ray, normal
  • Hip x-ray, normal (The internist scheduled this because during examination, I had some really profound pain and nerve spasms...although I'm not sure how an x-ray would show much more than a sprain or break. =/ )
  • ECG - high heart rate -- not normal!!! :)
  • Echocardiogram - my heart is healthy! Relieved that I don't have any major valve problems. The cardiologist is confident that my tachycardia is a secondary symptom to some other major physical imbalance.

He doesn't think I have POTS because, although my heart rate shoots up, my blood pressure remains generally normal. Mom is frustrated by this judgment because it's the only POTS symptom out of about 20 that I don't or haven't had at some point, and many POTS specialists point out that a patient needn't have every symptom in order to be accurately diagnosed.

He seemed really intrigued by my:

  • constant fever (4 weeks now)
  • eye problems
  • Raynaud's
  • I was really flushed -- it looked like I'd been sunburned on my face and arms. New symptom my mom's noticed in the last few days, shows up when I'm especially active or stressed. Thinking it might be a symptom some medication may have been covering up until recently.

He's sent out for:

  • a holter 24-hour heart test
  • liver tests
  • GI tests
  • blood tests
  • Endocrine consult

There's more to be said, but I'm exhausted! ***Please*** do not make any judgments by these early results. We're still finding out what's what!

love and patience,


Golden Crisp

My favorite lyrics to recite during tests etc:

"If the burden seems too much to bear / remember / the end will justify the pain it took to get us there." -Relient K ( )

Today's tests have been a lot more challenging physically than yesterday's. The endocrine test (Cortrosyn Challenge) didn't go too well. Basic procedure: take blood sample, inject Cortisol (?) through an I.V., take another sample at 30 and 60 minutes. Most people have no reaction to this test. I had lots of symptoms...flushed, palpitations, stomach pressure (new), full body tremors, very cold extremities. They let me lie down (my first real hospital bed!) and brought my mom from the waiting room back to the room where I was.

It was a really rough hour, but maybe a blessing in disguise since we met an AMAZING nurse who talked to us about the possibility of POTS. She said she's been seeing teens/young adults with Dysautonomia for 36 years, and often the doctors are -- to be quite frank -- just ageist and sexist about it. "Poor you, teen girl. Not ready for college so you have all these psychosomatic symptoms. Tsk. *Depression! Anxiety!* All right, who's next."

Just gotta prove them wrong.

We were able to get an earlier appointment than scheduled for the Autonomic Reflex Tests. They performed a sweat test, a deep breathing test, and a brief 10-minute tilt-table test. Mom took really great notes of my numbers and symptoms throughout. The technicians for these tests were probably the best yet -- really encouraging and helpful. RHR 103, blood pressure right around 115/70. When they tilted me up to standing, my HR hit 135 at about 9 minutes (same as at LF Hospital), but my blood pressure averaged out to only about 100/60. Lots of crummy symptoms again.

All tests and appointments today combined, I think I had my blood pressure taken about 25 times. Poor squished arm.

**Note. We just looked up the internist on the internet (hahaha. I'm so easily amused.)--our go-to guy at Mayo--and his specialty fields are geriatrics and psychiatry. Oookay, so maybe that's part of the reason he was really interested in my mental health. =P

Thursday, March 26, 2009

French Toast Crunch

Today's highlights:
  • Heard some med students talking...funniest conversation ever. "Hey, dude. So you going for the Guggenheim?" "Nah, man. My girlfriend at Stanford's sure to get it." "Wow, great school." "Dude. Psh. We're at Mayo." ...and then a bunch of gibberish about epidemiology. haaa haha
  • Why is it called a Clinic? It's humongous! Mom has suggested a new name: Mayo Taj Mahal. Seriously, it's like a hotel.
  • Since doctor-visits in October, I've somehow grown two inches taller!
  • RHR 102 bpm, blood pressure 108/73, later 100/53
  • Received files sent over from McKinley (U of I health center) -- um, I guess I had borderline high cholesterol and nobody told me. This seems especially strange b/c I eat really well. =/

All right, more serious stuff:

  • First doc (our go-to guy) seemed lazy at best. Used these strangle-inspiring lines like, "You know, college is a big transition for everyone." Oh. My. Lord. I've been out of school for four months. I'm *incapacitated.* I'm not just some whiny kid! I started getting upset, and he pretty much dismissed me as hysterical. Mom called him out on that, and he backed off. Good grief. At least he ordered a bunch of tests and consultations.
  • Took 5 vials of blood for testing, was really hard to fast from 6pm to 10am. Got really light-headed and punchy. A nurse called for "Howard Johnson" and my mom and I cracked up. Oh HoJo. We knew you well.
  • ECG (aka EKG) went okay. I've done several of these before, but this was the first time I felt the current in a few places. My face got really warm, worse palpitations.
  • Chest x-ray and hip x-ray took only a couple minutes apiece -- my favorite! Both looked normal as far as I could tell from the monitor in the room, but I'm no doctor.
  • Echocardiogram was SOOO cool. I got to watch the ultrasound. Man. Even if it's needlessly hyperactive, my heart is really awesome. :) Heart rate started at 102 bpm, up to 117, finished at 91. Bonus: math and graphing in action! The technician measured the highs and lows of my HR, the area of the curve, and compared it to the size of the different chambers. We should get results when we talk to the cardiologist tomorrow afternoon.
  • My patient number is almost exactly my cell phone number backwards. sweet.

Busy, busy day! Pretty much wiped out. Tomorrow: Autonomic Reflex Testing (POTS, etc.), Endocrine Test / Cortrosyn Challenge, and a cardio consult. Thank you everyone for your messages and prayers.

Howard Johnson!!


Message from the Mother

Emma's having bloodwork drawn here at Mayo so I get to update. The tests scheduled are EKG, chest xray, echocardiogram, hip xray, endocrine test, autonomic test, cardiac consult, dermatology consult, neurologist consult, and follow up. Appts are scheduled through Tuesday so far. Stay tuned!

Wednesday, March 25, 2009

Special K

I have to admit, I'm running out of cereals.

Hooray! We have successfully made it to Rochester, MN, home of the world-renowned Mayo Clinic. Our hotel is right across the street from St. Mary's Hospital...which I thought was Mayo. Got a little too excited there.

Anyway, six hours on the road and only a few back spasms! Yay! This has been my longest "active" day...probably since Christmas Eve. I'm happy to be awake enough to write this now.

My eyes were (are) *super* sensitive today. It was overcast the whole way up, but I wore sunglasses because everything seemed (seems) so bright. I kept trying to yawn to make my eyes water, no such luck. Dry, itchy, burning-feeling, but a little relief once it was dark.

Mom is putting forth an Olympic effort, organizing my mountains of blood tests. You know, Chuck, she's been training for this event her entire life. Is that so? Yes, super-mom and butt-kicking attorney will need to be at her best to compete with these seasoned doctors. Did you know she's been studying "House" screenplays? I'm not surprised. Nothing can stop this mom! Will she win the gold? Only time will tell, Jody. Back to you, Vic.

Wow, I am really out of it. I consider it an act of public service that I am not pursuing a career in comedy. That's how much I love my fellow man.

good night,

p.s. 7:15am tomorrow! Ten hours...YES!

Tuesday, March 24, 2009

Christmas Rice Krispies - Part 2

I wrote that about 6 hours ago, but I guess it didn't post.

Lots of tremors in the past few hours, getting kind of scary.

Change of plans -- heading up to Mayo Clinic in Rochester, MN tomorrow afternoon for an appointment first thing Thursday morning.

I'll post more tomorrow, hopefully. Feeling really crummy right now.


Christmas Rice Krispies

For the record, Christmas Rice Krispies are WAY better than the regular kind.

Last night was rough. I probably expend five times as much energy when trying to convince someone I'm doing okay. Fun, and much-needed catching up, but it's something I'm not used to: resting in anticipation of a short visit, and afterward it takes time to kind of "recharge."

I had a lot of trouble falling asleep. My eyelids were twitching nonstop when my eyes were closed; when I opened my eyes, I saw "shooting stars" and twinkling lights in my peripheral vision. I almost always see some kind of sparkling when it's dark, but this was almost scary. My eyes were really dry, so that could have added to it. When I woke up this morning, my eyes felt like they were burning. Ouch.

My hair seems to be falling out more than usual in the last couple days. So far the only explanation we've had for it is "stress"...maybe I'm just anxious for this doctor appointment. Two days!

Sent in my LGS diagnostic test yesterday, should get results in 2-3 weeks. =/ It's hard to be patient.

In reading other teens' blogs about POTS, CFS, etc, I am so happy that I've already graduated from high school. It would be so difficult to try to get through classes right now. My eyes (and body!) are so tired. The worst, I'm sure, is that these conditions are really hard for people to understand. It's not laziness, depression, or milking Mono for all it's worth. I hope everyone can learn a little empathy from my situation. Too often I think we give ourselves too much credit; we think we can assume details about other people's lives that we don't see with our own eyes.

I'm grateful so few people judge me in my circumstances. I hope we can give offer others a similar level of understanding and encouragement in challenging times.

"Stand in the Rain,"


Monday, March 23, 2009


Hey. Today--very tired, palpitations, a little vertigo, etc...but in a little better spirits I think. Just a few more days.

This is one of my favorite songs right now:
Been listening to it a lot in the past few days, thinking about Snowball and life and stuff.

hah. So sometimes after I take my meds at night, I get a little loopy...and last night for some reason I was making up nicknames for myself. I forgot most of them, but this one I still remembered this morning and it made me laugh.

peace out, kids.
emcee trevva


Sunday, March 22, 2009

Reese's Puffs

Today's cereal in honor of Snowball--lol. I'm so happy my sister had such a great time and seemed to learn a lot. She spoke so highly of everyone...thanks for giving her a weekend to remember!

Just fighting the frustration of it all. Sometimes I feel like I'm stuck in "Groundhog Day."

Bad bloody nose last night. Today, just more of the same from the last two days. The twitching seems to have become more frequent...about 1-2x a minute, usually in my legs and feet. Also my trembling has returned full-force. Jaw and knees shaking a lot which results in A) locking my jaw, which I'm sure doesn't help my headaches and B) depending on the railing when I walk down stairs. Very sleepy, achy, and having more vertigo lately.

Just four days until Dr. Cooley -- the POTS cardiologist in Milwaukee. Some answers, please! If he isn't able to help me, we're considering Mayo Clinic in Minnesota. Ack.

In the meantime, we got the kit to test for Leaky Gut Syndrome. It's a terribly blunt name, suggesting bodily fluids just seeping out of a belly-button or something. Whatever happened to the euphemism. Tsk. My, how times have changed. Haha. It's also known as "Intestinal Permeability:" essentially, if you've somehow lost the ability to absorb vital nutrients, it will make you sick. And if your body is instead sending toxins to different cells and systems of the body, then it can make you very sick.

Time for some more rest. I really want this to be over soon.

"All my life, I had a lump at the back of my neck, right here. Always, a lump. Then I started menopause and the lump got bigger from the "hormonees." It started to grow. So I go to the doctor, and he did the bio... the b... the... the bios... the... b... the "bobopsy." Inside the lump he found teeth and a spinal cord. Yes. Inside the lump was my twin."

oh, aunt voula,

Saturday, March 21, 2009


Yesterday was a bummer and a half. Spent most of the day in bed, and my time on the couch...well, backache, migraines, nausea, cramps, extremely tired eyes, foggy in my noggin, heart racing, chest pain, fever...yeah. Probably should've stayed in bed.

So far today, I seem to be on the same agenda. It's very frustrating that the painkillers don't really seem to be making much of a dent in my headaches. Not thinking straight a lot of the time. New symptom: involuntary twitching, especially while lying down, especially in my thumbs, knees, and feet. Nose went numb again for a bit, fingers tingling. :(

I'm watching Season 2 of "The Office," which is quite funny. Its title could also be "My Boss Is Dumber Than a Goldfish and Less Mature Than a Fifth-Grader." Little long, but pretty much the premise of most episodes. Oh, except you might have to add a sub-title like, "And there's this guy Dwight...who you wouldn't believe."

Movie quote:
"Short people have long faces, and long people have short faces. Big people have little humor, and little people have no humor at all."

"Dignity. Always dignity."

Friday, March 20, 2009

Quaker Oatmeal Squares

Today's featured cereal is my sister's and my latest discovery. It sounds like a boring cereal, but let me tell you, the Golden Maple kind tastes like a combination of Golden Grahams PLUS Waffle Crisp. I think Julia and I finished that box in less than two days. It didn't have a prayer.

I was glad to have enough energy this morning to help my sister with some last-minute packing for Snowball, b
ut in the last four hours or so, palpitations have been really fast and painful. Just hanging out in bed, thinking about how when I was sick at school on my top bunk, I would count the little holes in the ceiling tiles, and then estimate how many total there were in our room and hallway and floor...because I am really weird.

My ceiling at home, luckily, doesn't have any holes in it, despite my efforts as a child to add more natural light. So instead I think about other totally thrilling things, like how I've never really grown out of my fascination with laundry chutes. It's like a built-in toy for your house!

"Bless this highly nutritious microwavable macaroni and cheese dinner and the people who sold it on sale. Amen."


Thursday, March 19, 2009

Waffle Crisp

Ambien is super because without it I can't sleep through the night. Its one downside is that precisely 7-8 hours after I take it, I wake up and have trouble getting back to sleep. My body probably needs about 9-10 hours a night, but hey, 7 is better than the 2.5 I was getting before.

I think I jinxed myself when I said my stomachaches were better. Whoops. =p Also feeling nauseous, tired, achy, itchy scalp, etc., but definitely feeling more like myself today, fewer meds messing with my personality, if that makes sense.

Movie quote today in honor of a certain Snowball video & skit :)

"Rufus, Brint, and Meekus were like brothers to me. And when I say brother, I don't mean, like, an actual brother, but I mean it like the way black people use it. Which is more meaningful I think. If there is anything that this horrible tragedy can teach us, it's that a male model's life is a precious, precious commodity. Just because we have chiseled abs and stunning features, it doesn't mean that we too can't not die in a freak gasoline fight accident."

uh, earth to meekus?

Wednesday, March 18, 2009

Golden Grahams - Part 2

Wow, sorry these posts are getting so long. Props for you for still reading them!

Dr. Bodkin just faxed over my charts...and holy moley, I'm pretty sure both doctors read it wrong. The results summary says my heart rate went from 104-140. The chart says that upon starting, my resting HR was 104 bpm; it peaked at 152 bpm at 22 minutes, and ended at 147 bpm at 40 minutes (the end of the standing). Nine minutes later, when I was supine, it landed at 90 bpm.

Wouldn't it make sense, then, for the summary to say that my heart rate range was 90-152? That's a pretty significant difference, and might make the difference in a diagnosis of orthostasis. The exact quote from the report: "The patient completed the entire protocol with no significant events occurring." hmm...

Rar. Will show this to Dr. Cooley next week.

All the EKGs performed came back normal.

Symptoms recorded during exam:
  • 2 minutes into test: felt like I was "lurching back and forth;" felt like I was going to fall on my face
  • 3 min: seeing black spots
  • 13 min: hands very cold
  • 15 min: fingertips numb; very tired
  • 18 min: nauseous
  • 21 : feeling hot
  • 23: chest pain (I think at this point I was having really bad brain fog. I remember him asking me to repeat what I said for most of the remaining symptoms because I wasn't making much sense.)
  • 25: hard to swallow, asked for water
  • 30: chest pain a lot worse on my right side
  • 35: fingers tingling
  • 39: right elbow hurts
  • 6 minutes after being supine: really distorted sense of balance. The table returned to approx. a 15 degree angle; I felt like my head was much lower than the rest of my body, inches away from the floor. Face hurt like I'd been hit by a truck.
I guess the technician didn't record all the times I asked if I could "get off" or "go home"...yeah I think I was really out of it. No fun. Especially because they didn't let my mom come with me, even when the procedure was being explained. Bad idea on their part; I think everybody needs someone there to speak on their behalf. I should've insisted. I have memory loss! But I guess I forgot. =P

Per sibling request, I am adding the movie quote guessing game to the end of each post from now on. One guess per sibling, unlimited guesses for everybody else.

"I dunno. This is espresso, you know? It's like Coffee-zilla."
"I said I'm hip."

P.S. Forgot to put the highlights from my blood pressure:
  • 1 min 130/76
  • 9 min 113/79
  • 17 min 112/60
  • 20 min 130/70
  • 24 min 104/ 50
  • 30 min 110/71
  • 35 min 109/59
  • 40 min 106/60
  • 2 min after being supine: 97/70
  • 9 min after: 113/67
Don't know if these data mean as much.
Anyway, thanks guys! God Bless! :)

Golden Grahams

Major frustration. The cardiologist and rheumatologist talked and looked at my charts from the tilt table test-- and pronounced it a "Negative negative."

What the heck. It was just one test. Why do you have to say it twice? What, rubbing it in? Huh? GAH!

They say because my heart rate went from 104 to 140 beats per minute (bpm), it's not high enough to qualify as orthostatis or autonomic dysfunction. In other words, in their view, I don't have POTS or orthostatic intolerance or dysautonomia or anything. In other words, as they've been telling me for months, I'm "just fine."


Now, granted, Dr. Bodkin admitted she's not an expert on this, and I did have a zillion other symptoms during the test (and around the clock), so she supports us going up to Milwaukee next week to see this POTS expert and see what he says.

It's just killing me. I've been a lot more diligent about taking my pulse when I have palpitations, and I'm lying in bed for a couple hours, listening to relaxing music--you know, resting, as in my resting heart rate: last night, 108 bpm. This afternoon 111 bpm. The normal, healthy rate is 60 bpm.

Hello?? There's something wrong with me! Let's figure it out, you morons!

Sorry for all the venting. I'm just losing my mind.

Tonight all the advanced choirs at U of I are uniting to sing the Brahms Requiem. Wish I was there. Wish I had the energy to sing. Break a leg, everyone!

Other symptoms today: really shaky, knees, jaw, hands; joint pain, headaches, earaches, palpitations, zinging chest pain, trouble balancing.

Improvements: fewer stomachaches since I've been off the Prednisone, Ibuprofen, and Advil PM. Going to the eye doctor, they put drops in my eyes and I've been able to produce tears today! I've had really dry eyes for a couple weeks.

someday, somehow,
I will be better.

Tuesday, March 17, 2009

Lucky Charms - Part 2

The ophthalmologist stunk like a wet dog at low tide. (Not literally, of course.)

I don't understand how people like this are successful medical professionals. I guess their incredible genius just sours over time, warping their minds from strong muscle to soggy Jello-like sludge.

Last week I read and reviewed well over 100 college admissions essays. These students write truly touching anecdotes, times when they were inspired by their own doctors, or surgeons of loved ones. Men and women who save people's lives, treat the needy locally and around the world. Fellow human beings who use their education for the world--to help those who can't help themselves. Eighteen-year-old Future Doctors inspire me. They have such pure, noble intentions. They are so passionate about biology and, more importantly, the human experience. They want to help people.

When is it that med students lose sight of that genuine quality? Or I suppose some never had it in the first place. At this point, I've had it up to here with doctors who are so full of themselves, so sure of their own expertise that even the EYE DOCTOR can't see past his own nose at the sick, suffering patients in front of him.

The story:

After waiting forever and filling out a zillion forms, the two associate optometrists were really nice and sympathetic, running the procedural vision tests and trying to understand my medical history. THEN the super-genius ophthalmologist comes in and rips me apart. He basically says that my eyes "were never taught to 'work together'" --like I've been going to some mental reject school -- and it's a miracle I've been at all successful academically. He says I have major issues with depth-perception and says to my dad, in a nasty way, "If you let this kid drive, you better put another bumper on the car!" [Note: if he'd read my forms, he would have known I haven't driven for several months, due to my drowsiness and *bing bing* EYE problems.]

He insults my father, blaming him for this hereditary condition. He tries to sell us this CD-rom program to fix my vision. He yammers endlessly about how he's trained Olympic athletes. (Whoop-de-doo, Bub. Good for you.) Meanwhile, my ears are spasmodic, and I'm having difficulty breathing. Besides it's been a long day and I'm fading fast. I motion to my dad that we should get going. My dad clears his throat and says we have to get home. THEN the doc looks at me and says rudely, "What's going on? Is she going to be all right?"--in a tone of voice akin to, "Ugh, is she going to get sick on the floor?" Well, Mr. Internationally-Acclaimed-
Eye-Doctor, if you had GLANCED at my flippin forms, you would know that I have been really terribly ill for about 5 months. Buzz off, Bozo.


So yeah. He didn't find anything in my eye or optic nerve or anything that could be medically causing my symptoms. Crossing that off the list.

I'm proud of myself and my parents for not physically hurting anyone so far. And I love my mommy very much 'cuz online she posts scathing reviews for doctors that treat me like trash. :)

Will post again first thing tomorrow once we hear word about the tilt-table test.

Happy St. Patrick's Day!

Lucky Charms?

Ambien makes me very happy. First good night's sleep in weeks!! [Doc said it was okay :) ]

Just got back from the Tilt Table Test. BAD. ugh. Strapped to a Frankenstein table with 83927 wires in me, machine taking blood pressure every 60 seconds, standing at a 70-degree angle, exhausted, heart beating wild, can't keep my eyes open, can hardly breathe, for 40 minutes. That's a very, very long time for me to be standing up. I'm glad I didn't pass out. That's mainly what the test checks for--syncope.

We should get the results by tomorrow. My brain was pretty fogged-up the whole time, but I remember he said my resting heart rate (lying down) was 104 bpm. Not so good. =/

Ophthalmologist later today. Now it's time for some rest.

Thanks for your support, everybody!

Monday, March 16, 2009

Cocoa Puffs

Last night I think I slept from 3-4:30am and 8-11am. I don't understand why it's so hard for me to get a good night's sleep. And I don't know why the docs are so averse to putting me on prescription sleep meds. must...sleep...aggh.

Symptoms today: palpitations, hot & cold, migraines, my feet feel really heavy. Harder to get around. Fatigued. etc.

So tomorrow's the big day. Tilt table test at LF Hospital early early. I'm a bit nervous I won't "pass" and be diagnosed with POTS because 1) my palpitations don't necessarily go away or slow down when I'm sitting or lying down and 2) I haven't noticed blood pooling in my legs and feet like a lot of other POTS patients have.

Anyway, thanks to everyone who's been reading this, and keeping me and my family in your thoughts and prayers. Thanks especially to a few who've sent "good luck charms," --very appropriate for St. Patrick's Day! :) I'm so blessed to have such great friends and family. Oh, and I hope I've answered a lot of questions by adding the lists on the right column. Thanks for your emails and advice! =)

love and four-leaf clovers,

Sunday, March 15, 2009

Smart Start

It's gorgeous out today! :)

Didn't sleep well again last night. Was resting in bed for a few hours this morning. Really fast palpitations, painful migraines. Noticed some red splotches on my feet that I hadn't seen before; went away after elevating my legs for a few minutes.

Mom and I walked 10 minutes today, first time in a while. Good to get out. Crazy chest pain by the end though.

I'm following YouTube videos by a girl in NJ who has POTS. She's 23, first got sick 4 years ago. She's just starting college now, taking one class twice a week. It's great that she's able to do that, but I have to admit it freaks me out. In my mind, I HAVE to go back to school as soon as humanly possible. But I can't make schedules any more.

Every day is just so hard. Gotta keep looking ahead, moving forward.

I have 6 songs in my iTunes called "Hold On,"

P.S. Her username is "ChronicallyKyli" if you're interested in her videos--a couple are really informative. =]

Saturday, March 14, 2009

Corn Pops

Well yesterday wasn't great, and today hasn't been stupendous either, but, to quote Scarlett O'Hara, "Tomorrow is another day!"

Really painful palpitations again this morning. Terrible dreams last night. Migraines, achiness esp in my hands and ankles. Lots of ear pain and ringing. Bleh.

Been doing a TON of reading about POTS...yeah. I should be comforted that, if this is what it is, that other people have it and have had it. But the thing is that not everybody gets better. And I don't like that. I won't accept that! I have a whole lotta life left to live! I can't just be stuck in this state forever! No way, no how. I'm gonna do whatever it takes to fix my silly autonomic nervous system, and just be on my way. Thank you very much.

Fight, fight, fight. Hence the boxing gloves.

go to the mattresses!

Friday, March 13, 2009

Total Raisin Bran

Toes went numb for a couple hours yesterday.

Heart beat really, really hard now for the last few hours. Expecting to stay in bed today. So tired.

more tomorrow,

Thursday, March 12, 2009

Cinnamon Toast Crunch

Temperature today of only 98.9!! Lowest it's been in a while. Last day of Prednisone--rejoice!

Really awful migraines last night, plus jaw and ear pain. Went to bed at 10:30, fell asleep around 2, up again at 6. Not sure if I slept any more after that. Kept having paranoia, like sitting up and freaking out because I didn't remember my name or where I was.

My GP doesn't do tilt table tests, so we're trying to set one up through Lake Forest Hospital. My mom is most excellent, and she's found a ton of information on POTS, including who best treats it. There are only 2 "POTS-approved" MDs in Illinois, and 3 in Wisconsin. It's a very new disease, and most doctors don't know much about POTS. We have an appt to see a doctor in Milwaukee in 2 weeks, assuming the tilt table test comes back positive.

In other news, we've switched from Ibuprofen to Tylenol. Woo. Still aching.

I really don't feel like myself today, so I'll stop before I say something stupid.


Wednesday, March 11, 2009

Blueberry Morning

Yesterday I struggled to stay awake during the day, but I knew if I took a nap it would just make it harder to get to sleep last night. Took the new Rx muscle relaxant Cyclobenzaprine (5mg), went to bed at 10:30, had a lot of trouble getting to sleep. New symptom: a really painful, high-pitched whistle tone in my left ear. Ouch. Only one back spasm, so I guess that's an improvement. Just endless heart palpitations in my neck and wrists, labored breathing. Fell asleep around 4:15, and slept until 11:45. A solid 7.5 hours though, even if it took almost 6 hours to fall asleep.

Tonight we're upping the dosage to 10mg. Hopefully that will help.

Restorative sleep is the best thing for a person. I'm still super tired and groggy.

Trying to challenge myself a little bit physically, although it's sometimes really hard. I stood up while blow-drying my hair today, instead of sitting. Standing for a good 5-10 minutes makes my heart beat a lot harder. Ow.

gotta rest,

Tuesday, March 10, 2009


Last night was awful. I was up all night, slept maybe two hours between 8 and 10am. Lots of back pain, hot and cold, etc.

Today saw Dr. Bodkin. Taking 5mg/day of Prednisone for two more days, then no more! Hooray!

Mom suggested the doctor test me for POTS (Postural Orthostatic Tachycardia Syndrome). Basically seeing if my blood pressure and pulse increase significantly between lying down, sitting, and standing. And...drum roll please...POSITIVE!! I'm orthostatic! We don't know if that means much yet. POTS specifically is determined by a more involved table tilt test. Will get that administered through my GP sometime soon.

Anywho, she gave me a muscle relaxant which should also help me sleep. And a prescription for Cymbalta (barf) which I think we'll wait on. She had a patient like me a while ago who took some herbal/natural supplement and felt great, so I'm going to try that first. Cymbalta has like 100 side-effects, and I've been down that path before. No fun.

Really bad migraines today. Probably read way too much yesterday. Need to lie down now.

I just want to clarify something. When people ask how I'm doing, and I say "I'm hanging in there" or "I'm doing okay today" or "Just taking it a day at a time"...this means that I probably feel like crap. "I'm decent" means "I'm still alive, and I'm doing all I can to get my mind off the pain."

I realize my manner of speech can be confusing, but *please* understand: I'm not better. If I have a good couple hours every few days, that's really huge. I'm not better yet. Just...agh. Understand.

orthostatically yours,

Monday, March 9, 2009

Berry Berry Kix

Last night, around 11, I suddenly had a ton of energy! Kind of exciting, but I'm feeling it now in my shoulders and hands.

Slept relatively well last night, only took about 1.5 hrs to fall asleep, then a solid 9 hours =)

Today drowsy mostly. Headaches, heart palpitations are my biggest symptoms. Ears really sensitive. Other stuff...stomachaches, etc. Only 5mg of prednisone tomorrow and we're seeing the rheumatologist. Will probably run some more tests. Any suggestions, let me know.

Meanwhile, despite the headaches, I really like reading all these college admission essays. Gives me a sense of purpose, I think. Living vicariously through the over-achievers. Hopefully I'll be back with them in the fall.


Sunday, March 8, 2009

Apple Jacks

I've had quite enough of this nonsense. Body, let's get it together!! Agh!

Lots of ear pain last night. Went to bed at 1:30, lay awake for at least 2 hours, listening to music. I must have fallen asleep at some point, because at around 5am I was completely drenched in sweat. I hung my pj's up to dry and they're still wet. Mom says the night-sweats are a side effect of going off prednisone. blah.

Been having a really rough day. Incomprehensible headaches and stomachaches, shooting pain in my chest, dizzy, etc. Had to miss Julia's play at school. Major bummer. So so so tired, but haven't been able to nap.

Still got that fever. Well over a week now.

I liked the "spring forward" though. One less hour of this crap.

time for 60 minutes,

Saturday, March 7, 2009

Cap'n Crunch

Last night, took about 3 hours to fall asleep. Woke up a couple times in a cold sweat. Bad dreams I think, plus backache.

10mg Prednisone today. Some improvement in the stomachaches I think. Still headaches, sensitive eyes and ears, palpitations, back pain, chest pain. Especially the upper chest hurts sometimes when I breathe. Kinda weird.

Worn out from a "busy" day.

But I'm having fun rating college essays for U of I's honors program! Hmm...maybe I have a future in college admissions...

the gatekeeper,

Friday, March 6, 2009

Count Chocula

Rough day. Starting to wean off the prednisone -- 10mg today. Hands, fingers, wrists, elbows in a lot of pain. Especially tired. Didn't sleep too well last night, lots of back pain and stomachaches. I dreamt that there were no more pennies in the world! Very sad. Today also chest pain and in the sides of my rib cage. Still got that fever. Headaches and neck aches sporadically throughout the day.

Beautiful outside. Watching the neighbor kids play and ride their bikes up and down the street is a little depressing though.

I'm going to get better! Really!

deep breaths,

Thursday, March 5, 2009

News flash?

I think my mother may have missed her calling to be a medical researcher.

Today she's been reading about Leaky Gut Syndrome--and it seems to explain a lot of my symptoms. It has been linked to auto-immune diseases, chronic fatigue, fibromyalgia, and other conditions.

We'll ask the rheumatologist about this on Tuesday. It sounds like a major possibility to me.

pleeeeeease a diagnosis!

Frosted Mini-Wheats

Rar. Did not sleep well at all last night. :( What happened! I was on a roll! Basically got a grand total of about 30 min of sleep between 12:30 and 5:30, then put some music on, got up at 6:30 to eat breakfast with my sister. Fortunately able to fall asleep after that -- until about 10:30. So maybe 4-5 hours total last night. As a result, tremendously tired all day. Headaches like none't think. Palpitations, chest pain, back pain, some spasms last night, itchy eyes, stomachaches really awful. Still got that fever...waiting to hear back from Dr. Bodkin (rheum) to see what she thinks I should be taking. Ugh.

BUT! It is looking like Springtime in Chicago!

Found a ladybug in the kitchen sink. Exciting.

Tomorrow I only take 10mg of the Prednisone!!! Yay weaning off--will be all done on Monday.


Wednesday, March 4, 2009

Team Cheerios

Slept well again! A good 10.5 hours. :)

Pesky fever, painful wrists. Had a good hour or so this morning, but now am very tired. Heart palpitations take a lot out of me.

Things will get better! Please!

Tuesday, March 3, 2009


I slept well last night!! Well, minus the owl at 4am, which might have just been the wind. First night in at least a week that I didn't have any back spasms! Yay!

Went to the chiropractor today, feeling a little better after. Just really tired. Especially my arms. I don't get that. Heart palpitations bothering me a lot, and my ears.

Season 7 of Gilmore Girls is toeing the line of totally bogus. It was a stretch for Lane to marry Zack in the first place, but now they're having a baby? Twins, no less! You've got to be kidding me. Can you say 'ratings ploy'?

Watched the *classic* version of Willy Wonka and the Chocolate Factory yesterday. =) The scenes of the worldwide hunt for the golden tickets always crack me up.

"My dear boy, if the good Lord intended us to walk, he wouldn't have invented roller-skates."

everlasting gobstoppers,

Monday, March 2, 2009

Honey Comb

The snow is blinding. Ow.

Silly fever's still hanging around, right around 100 all day. Gotta fix that. Ears particularly sensitive too, and I'm super cold today. Nose went numb again yesterday. Wrists a main source of pain too.

Last night I fell asleep relatively quickly, but at 2:30 I had some back spasms and other pain and freakish paranoia...couldn't fall back asleep until about 6:15 :( But then I got a solid four hours, so I guess that's good. Still just really tired and beat.

Constantly hungry and thirsty. Headaches. Foggy in my noggin.

Listened to a comedy routine on CD today that my dad got at the library. Funny stuff.

Chiro tomorrow.
Waiting rooms are the worst. Hope I don't have to wait.

Happy Casimir Pulaski Day!

Sunday, March 1, 2009

Frosted Alpha-Bits

March is a new month. Nearly a new season. Post titles will now honor my favorite cereals, past and present.

Still have the fever, ranging from 99.0 to 100.4 in the last 24 hours--100.3 most recently. Not a biggie, but I would feel more comfortable if it went away. And took some friends along with it: hyper-sensitive eyes and ears, back spasms, crazy stomachaches, weird dreams, itchy scalp/ hair falling out/ sores on the back of my head, unrelenting heart palpitations, chest pain, muscle and joint weakness, headaches, extreme fatigue, trouble concentrating, etc.

Super frustrating. Keeping the limited diet because of the stomachaches. Seeing little difference. Hoping this month will bring some improvements.

watching some brilliant movies, though, like Finding Neverland...and Glitter!

why do i always sign my name here?