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."
em

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."

aaaaggghhhhh.

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.
emma

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:
*ahem*

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.

*Huff!*

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!
emma

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!
em

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,
emma

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,"
emma

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

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!
emma