A New Lead?

Mom is a super sleuth. Checking out a two-week POTS treatment in Dallas...

http://www.potstreatmentcenter.com/#!pots-treatment

Recommended documentary: Strangers No More 

love on each other, kiddos.
et

This Week

I GOT TO KEEP MY CLOTHES ON! Omigosh. No hospital gowns? Who knew! Definitely the highlight of my week. Score.

My neurologist hasn't yet looked at my test results, but here's what I thought about them:

• Brain MRI - different noises than the other two I've had, and shorter in duration, but otherwise unremarkable. Pretty standard. I'm an old pro at these.

• EEG - not my favorite exam to say the least. Yeesh! You have to come in sleep deprived (a state I am all too familiar with), and then perform some commands with 26 gooey electrodes slapped on your head. My eyes wanted to freak out, but the technician kept saying to keep them as still as I could. With much difficulty, I obliged, thus forcing my entire lower body to twitch uncontrollably throughout the test. And don't get me started on the dreaded strobe light! Yet the technician said she didn't see any evidence of seizure during the test. Hm.

• Most recent blood test - normal. 

Given that my episodes can last for up to 15 minutes and so far I've never lost consciousness, the neurologist thinks my eye episodes are not traditional seizures, but rather a sign of autonomic dysfunction. My mom hypothesized about my tendency to be somewhat hypoglycemic, and upon reading my bloodwork, Dr. S noticed my numbers were at the low end of the spectrum. She has ordered a Glucose Overload Test (Monday). I will also complete a Holter monitor test to check out my palpitations. Follow-up scheduled for next Friday.

Tip of the day: If you are a receptionist in a doctor's office, wear something slightly nicer than a t-shirt. You are, supposedly, a professional. Yet you decide to wear an ugly old t-shirt. Well as long as it's not that one-- wait, seriously? You didn't. (Ohh yes she did, Miss Thang!) You wore the t-shirt with big, black skulls on it. Haha, well it's not like you work in the healthcare industry. That would just be cruel.

What are you thinking?! What does this say about the doctors you represent? Ugh. Come on.

Also, your fancy chained pen doesn't work, you're a half hour behind, and for Pete's sake, spit out your fluorescent yellow gum! Like a cow smacking on her 80s neon cud. And get your overhead light fixed. The flickering is gonna give me a flippin' seizure! Or whatever this is!

Doctor's offices these days, bless their hearts.

Blueberries and vanilla ice cream,
emma

Medical Update

Blood tests came back a little wacky. Ran some more tests to check for high blood volume (Polycythemia vera).

Today: MRI of the brain. Tomorrow: EEG. Hospital gowns, get ready for this slice of gorgeousness right here. I am bringing my own slippers, courtesy of the wonderful Grandma Sophie. :)

Movie recommendations: In Time, For Your Consideration, and a longtime personal favorite, Mona Lisa Smile.

stay cool, cats.
emma

Seize the Day

Oh lordy. I do not want to write this post.

Last Tuesday I had an amazing day. Still on a high from fellowship the night before, I had a great, challenging session with my trainer in the morning, and my afternoon was productive. Things were really looking up! Then, while out to dinner with a bunch of church friends (hello, you wonderful people!), I suddenly felt fatigued and suffered a petit mal seizure. I'd never had a seizure before. Boy, was I lucky to be with my mom and a lot of people who care about me and know about POTS! I didn't lose consciousness or control of anything except my eyes. They rolled up into my head and flitted around for about 5-10 minutes. It was scary. We thought it was just because I had a tough workout, combined with maybe a change in my sodium intake and a potassium deficiency. The episode eventually passed. Our friends escorted me to the car in case I fell. Temporary remedy: OJ, banana, vitamins, rest.

A couple days later I was fatigued again. I felt "pre-seizure" almost the whole day. Lazy, uncontrollable eyes, some heart palpitations, needing to lie down regularly. I missed out on a couple family events, and the one I did attend was largely spent lying on the couch.. On Saturday I had another small seizure, after eating lunch. I called my dad to come sit with me until it passed.

This week I've been taking a potassium supplement, a calcium supplement, and increasing my intake of foods with high amounts of either of those nutrients. I've also cut down my sodium, to about 3,000 mg/day (although I'm not keeping track like I used to). I'm nauseous, exhausted, and have little appetite. I'm on the couch a lot. I haven't been able to work out. Even going for a walk is tiring. My brain's not keeping up with conversations all the time. I wasn't surprised when I had a third seizure on Wednesday night after I took a shower. I'd been feeling "seizure prone" for a couple days. Same as the first time: flitty, rolled-back eyes for a few minutes.

Today I saw my GP. She ordered an EKG (normal), blood tests (we'll know in one week), and an EEG and MRI which we'll schedule for next week. Yay (sarcasm). My cardiologist (IEP) doesn't have an opening until next month, but we'll see him as soon as possible.

Sigh. The thing I'm most upset about is that I'm one HUGE step further away from driving. Huff. Whatever. Rollin with the punches! Watching lots of movies and listening to some awesome music. In terms of what you can do to help...hm. Pray. Hold my hand if you're with me when I have a seizure. Come over and watch a dumb Lifetime movie with me. Or better yet, recommend a good movie or TV show! I value your opinion.

Thank you all for your concern. I'm hoping this is just a temporary setback.

press on,
emma

Fun-sized, Me-size!

I'm about 8 weeks into my training, and things are going well. I'm gaining muscle, stamina, and flexibility. My weight has leveled out, which is great. I haven't gotten my heart rate in the target zone for a couple weeks, but I'm okay with that. Kinda wonky last week. We had some brutal, hot, humid days here in Chicago, and for me it's not worth it to risk a full-out workout in those conditions, even indoors. Safety first!

Salt: as much as I can bear. Tip: one tortilla has 410mg of sodium. Yeah, eatin' like 4 of those a day. Here's a great list I found too, for people seeking high-sodium foods. POTS is even mentioned in the comments.

Exercise is so fun. I forgot how much I love weight training, especially upper body and core muscles. They make your posture fierce! Which allows you to breathe more efficiently, and sing more fully! Yay!

Favorite compliment of late: "Emma! Wow, look at you. You're so... Emma-sized!"

Trust me, ladies; we are not meant to be super thin. Little boy bodies are for little boys. Celebrate yourself. Honor yourself. Challenge your muscles, mind, and heart to grow strong with a fun and active lifestyle. Fitness can be an art form, an outlet of creativity and problem-solving. And it builds self-confidence and gym membership can foster relationships! Exercise is good. Eating is good. Taking care of ourselves is so incredibly important. Don't let anybody-- self, family, media-- tell you that being stick thin is equivalent to being healthy. Ain't so. Healthy Emma is Emma-sized.

Anyway. Squee. I am happy.

2:30am, still waiting for some kind of sleepiness to set in. No biggie. To the DVR!

love love love,
(see you at the family reunion?)
emma

Kickin'

Chuggin' along.

Sodium: 9000+ mg/day
Weight: 124 lbs

I can't see my ribs anymore! I am no longer a size 2! I can't fit into my clothes! What does this mean? SHOPPING. :)

et

Progress!

Sodium: 7000+ mg/day
Sleep: 10-14 hours/day
Work out: 50 minutes of cardio 3x/wk, 30 min of weights 3x/wk, stretching every day
Weight: 121 lbs

Woo-hoo!!! Things are looking up. I'm feeling "better" - exhausted and sore, but overall more capable, more flexible. Slightly frustrated that I haven't been able to keep my heartrate in the target zone for very long, so I'll be focusing on that this week.

By the time I'm done with this program, my hair could be as long as hers!

Exercise consumes my time and my thoughts. It takes a lot of coordination: who's dropping me off, who's picking me up, what muscle groups will I work and for how long, and (of course) what to wear!

A big ol' smile, that's what.

Every day is an adventure. Just keep going!

emma