Working Girl

I got the job! I am the new Childcare Associate at my gym. I passed my CPR/AED training, so I start Sunday, working one morning a week. They'll phase me in, training me to supervise the fitness floor and sub at the front desk. I am so excited. I still can't believe this is real. Who gets a job offer when they're not even searching for a job? God is crazy-cool like that.

Yesterday was rough- lots of fatigue from the weather changes. But today is going to be better, I can tell. Just stay relaxed, keep doing my at-home treatment. No worries.

I get to meet my nephew tomorrow! Yippee!

peace, friends.
emma

Whaat!

Things are all over the place! Some bad days, but lately good days! Right now I am freaking out! I have an interview tomorrow! YAY! AHH! I hope I don't screw up! YAY! Go Team Autonomic Nervous System!

Books are terrific! What am I saying! Need to find an interview outfit in this closet! AHH!

deep. breathing.
et

Go Figure

Rough day for both sleep and digestion. I spent most of my time in bed or lying on the couch, watching the worst Lifetime movie I've ever seen. My sister and I laughed. Our dog rolled her eyes. Anyway, so at the end of my crummy day, I did my HRV test-- best numbers EVER. How strange! Hope I can keep those figures up while my other symptoms improve.

et

Driving!

Everything's going great. Monday and Tuesday were easily the best days I've had since my relapse in February. I had SO much energy-- shopped, hung out with friends, danced around, read for HOURS! On Friday I started driving again. Hooray! So far I'm just doing local roads, preferring to be out during daylight hours. And the new fitness director at my gym struck up a conversation with me, and five minutes into my sob-story-turned-success was like, "You have such a great attitude! I would love to hire you! Give me your information, seriously."

Wow!! Also my siblings and I will be at home for Thanksgiving... let the Christmas mischief-making begin!

i love reading!!!!
et

Back at Home

Hello everyone! Sorry this post is so delayed. The last couple days in Dallas were hectic, then we drove for two days, and then I needed a couple days just to get re-acclimated here. And now, the news.

• Welcome baby boy! Charles "Charlie" James Trevor was born on October 30, 2012 to my brother Matt and sister-in-law Katie. Eight pounds, nine oz., 20.5" long. Lookin' good, Champ! After some time in the NICU, Gnarly Charlie/Chocolate Chip/Chuckles/Chiclet came home from the hospital today. His Auntie Em gets to meet him in Colorado Springs in... 11 days!   [pics will go here...when I'm not so tech-stupid] 

•  My last two days of treatment (Nov 1 &2) went very well. It's amazing how a solid night's sleep can make a world of difference. Plus Mom and Dad took me to a dueling piano bar in Dallas which was SO fun. I sang like crazy. Like craaazy! It was a great way to celebrate my improvement (and also force baby pictures on total strangers). Aw, proud Dad and Mom are now proud Gramp and Grammy. :)

•  I got all the software and equipment for my continued at-home treatment set up. Four days on my own, and everything's going well. I have a pretty "demanding" schedule in that I have to do the following every day:
•  sleep 10 hours
• 10 minutes of breathing/temp. training as soon as I get up
• supplement/eat, then 20 min of HRV (heart rate variability) training
• kick around for a couple hours, eat lunch, supplements
• take a 30-60 min nap
• 25 min relaxation and temp. training
• exercise up to 45 min
• kick around in the afternoon/evening. eat.
• nothing stressful an hour before bed
• supplements/10 min breathing/ sleep
• and 1 hour or less of TV a day

 But hey, I'm not complaining! I left the Center feeling about 30-40% better. Dr. K is confident (again, promising but not using that word exactly) that if I stick with the at-home training, I will be 100% better in 6-8 weeks. She says to plan on it. I will be driving. I will be able to go to school and work. Skeptics should take a good long look at my eyes. They are not dilated at ALL anymore. Check out my skin. There's color in my cheeks again. I am reading! BOOKS! Goooo brain!

Now I'll admit, the last few days here haven't been my best-- even had a small seizure yesterday. But I'm convinced this is just my body, my nervous system working its kinks out. I am making progress!

In other news, I'm SO happy to be home! With my dog! And my cat! And my other cat! And my friends! And my DVR! And yeah, even my brother. ;-) Home is the best. I never want to stay in a hotel again. That is...until I get to see the NEPHEW! Ohh, babycakes. This is gonna be fun.

later, lovers! smile!
emma

Moody, moody

Started another new supplement yesterday. Crying off and on today. It's not me, it's so many shifts at once. I'm just exhausted and cranky. Change is hard, but I know it'll be worth it in the end. Just can't over-think anything or let myself get depressed. This is just part of the territory. Mood swings suck! Distracting myself with junk TV in the meantime.

Three days until I get to see my dog again!!!

et

Week 2 Begins

This post is kinda all over the place, like my mind. Bear with me.

The first day of week 2 is the worst for everyone. I have been ordered to not get discouraged. But it kinda stinks to have a little setback-- nausea, headaches, fatigue. This weekend I was pretty zonked out. But I was very happy after getting a massage. Go circulation! And Zimbabwe church was fun, even though I only know like 3 words in Shona. Such a fascinating language. Yay translators. But the woman pastor was out of town. Bummer.

Last Friday I was scoring an 85 on "medium" (level 2!) of breathing. Today I scored a 57. See what I mean about it being a rough day? But I got my temperature up to 97.1 at one point! Woo-hoo!

Also I'm definitely hypoglycemic. I'm supposed to mix my water with orange juice and have a snack every 2 hours so I don't crash.

I kind of want to lie in bed and watch "What Not To Wear" for the next 5 hours. But my dad's client (buyer? is that what it's called?) is really nice and taking us out to dinner. Forgot to mention that my dad flew in last night. Happy b'day to him, yesterday.

My brain is tired. I should lie down. And it's time to get a snack. That makes sense.

good-bye.

emma

Learning to Breathe

I'M GETTING AN 'A' IN BREATHING!

Well, kind of. A person's heart rate is closely related to their breathing. When I came into the office, my heart rate looked like the red line in the diagram below -- erratic and unstable. (Ignore all words on the graphs. Just needed the image.) A healthy person's should look like the blue line -- predictable and calm.



To train my heart rate to look like the blue line, Dr. K instructs me to use diaphragmatic breathing. I follow a specific speed for about 20 minutes each session. The first time I got really light-headed and sleepy. My brain's not used to this much oxygen! The best part is that I get to watch the graph being made on the computer as I breathe. That visual motivation is huge, as is the reward of earning "points" for the most rounded, even peaks and valleys. Today's score: 93. And I got a 97 out of 98 on oxygen levels in my blood. WHOA! (Yesterday was 81.)

Today I also started working on regulating my external body temperature, which is also greatly helped by the breathing techniques, as well as visualization. My fingers are so cold all the time. They should be about 96-97 degrees. Mine this morning were 80 degrees. But at one point during my session, they were 95.3 degrees! Amazing. I can't imagine what this might mean. No more wearing hats and gloves and slippers to bed every night? And we're only on day 2 of actual training! Pressing the "reset" button on my body is working, I think.

Dr. K has also recommended some dietary changes, including a list of supplements. Superfoods to the rescue! I've been so surprised that I haven't been nauseous at all since I've been here. We've got a 12-pack of ginger ale I haven't even opened. Cool.

Last night I church-hopped to a contemporary service for people in their 20s and 30s. Ohmygoodness, there are some nice-looking Christian boys down here! Worship was great, but I was kinda bummed out by the ego-crazy pastor. Sadface. Not to mention I am a rather blue girl in a rather red state. Not to step on anybody's toes, but can you please maybe quit hating women leaders and gay people? I coulda sworn Jesus was a revolutionary in how inclusive and loving he was. And don't we want to be like him? We are talking about the same guy, yes? Experiences like these really educate me on how people are brought up. Services like this one remind me that I am a follower of God alone. The Church is broken and imperfect because we, as humans, are broken and imperfect. So yeah. Everything with a grain of salt. Learning culture. Not taking things too seriously, just observing and loving what I learn.

But I am SO excited for -- get this -- ZIMBABWE WORSHIP at a UMC on Sunday. Ah! I am so dragging my mom to be African with me. Plus the pastor is a woman (woot!) who's traveled and sung all over the world. Yay yay yay.

It is time for dinner! I can eat! Kinda hyper! Wowee!

love-a-love,
emma

Dallas Day 1

Howdy! We made it to our hotel last night at 6:30. It was still 86 degrees out. Holy moley, this ain't Chicago! Anyway, as we're checking in, my mom casually mentions we're in town for a medical treatment. The nice woman behind the desk, Brandy, says, "Oh my word! Well let me just get you set up with our medical rate then." Bam, saved $20 a night. Score! Brandy, you're a fine girl. Thank you for making the 16 hour drive end on a high note.

Once I got in my room and lay down, I realized how completely exhausted I was from the past 48 hours. Having a seizure at my aunt and uncle's church should've been a clue. Slept like a rock and got up early for my 9 am appointment with Dr. K this morning.

Katie (the nurse) took my stats at sitting down, supine, and standing, and then hooked me up to two computers measuring my HR, outer body temperature, and something else. I don't remember much because at some point I had a weird episode of very shallow breathing. Opening my eyes was hard. Hot. Foggy. Felt like I was going to pass out. Small seizure too? Katie put ice on the back of my neck. Dr. K instructed me to breathe from my diaphragm. They gave me some vitamin powder + water to drink. Eventually felt better. Kinda felt bad that my appointment lasted an hour longer than scheduled, but these things happen. I'm sure their office is used to being flexible with us weird POTSy people.

Dr. Kyprianou seems great. She is obviously a woman of faith, which I really love in anybody, especially a doctor I'm putting my faith in. She asked extensively about my POTS history and symptoms, and then she asked what my biggest fear was. I said being very dependent on my parents and my family for a long time. She smiled and said I have no need to worry about that. (Me, inside: WOO-HOO!) Dr. K is very optimistic about her patients's improvement, but guarded about making any sweeping "everybody gets 100% better" kind of statements.

Later on we met with the other new out-of-town patients on the same 2-week rotation as me. So much for this being a teenage girl thing. A female nurse from Lousiana, maybe 30, got POTS a month ago out of nowhere, and spent 3 weeks in the hospital. A man from Nevada, about 45?, has had POTS (undiagnosed) for 4 or 5 years. We were so hungry to hear each other's stories and are determined to get better together. The Center has a support group that meets on Thursdays. I'll see these two again --and others-- then.

Dr. K's method is all about training the brain to get out of the Sympathetic (fight-or-flight) response. POTS patients' systems are stuck there! Instead, we will learn to activate the Parasympathetic response (rest-and-digest). I'll explain the exercises and machines as the week goes on.

As a special treat, I got a preview of the hydraulic(?) massage table. Just 5 minutes on it really helped my circulation! Looking forward to using it again.

We decided not to bring our wonderful dog Jelly on the trip, but other people at the hotel have their pups here! Tonight I met a Doberman named Lily and a Boxer named Champ. I looooove dogs. They are so therapeutic.

Presidential Debate Time!

hearts,
emma

Baby Boy Birthday Bingo

My brother and sister-in-law's baby is expected to arrive any day now. How exciting, and at the same time, depressing for me. If the kid doesn't pop in the next 5 hours (adjusted for Mountain Time), I will LOSE the family pool for guessing his birthday. No! Is it so much to ask, little buddy, to give your Aunt Em a lifetime's worth of bragging rights? Sigh. It's the least you could do. ;-)

Meanwhile, I am in crazy-woman mode getting ready for the Dallas trip. Woo-hoo! Two days to departure! My mom and I realized that we'll be gone for 17 days-- the longest either of us has been away from home (besides college). It's full-size shampoo all the way! And maybe bringing the dog. No, seriously.

I have a huge assortment of music CDs, books on CD, and comedy CDs. (Obviously we're not mp3-savvy like the rest of this century. Hey, everyone's an idiot at something.) Looking forward to the road trip and seeing some family along the way.

Yesterday was a "great" day and I was able to do a lot of laundry. Today I had to cancel my plans because I couldn't get out of bed, the rain was so tiring to me. I fell back to sleep for 3 hours and am still drowsy. It's amazing, the weather can just wipe me out! Hoping for sunny, cool travel days.

This trip is a HUGE sacrifice for my mom, who will be out of her office (but still working!) for two weeks. I promise, this is going to be the last heroic trip like this. We are coming back with answers, with a real-live action plan.

Come on, little boy! 4 hours and 45 minutes! You can do it!

love,
emma

T-Minus 10

My hair is falling out like crazy. I don't think I've ever seen it this bad this quickly. On the plus side, it doesn't take very long to blow-dry!

It's a pretty typical fall. Cold extremities, fatigue, shallow breathing, sometimes sensitive to light. But I'm trying really hard to leave the house once a day if I feel up to it. Right now I'm resting up... and then tackling a store in the mall!

Mom and I depart for Texas in 10 days!

wahoo,
et

Cinema

Today sucks less than yesterday! Nice.

And now for the long-awaited list of movie rec's. Peruse and enjoy. :-)

Drama: Answers to Nothing, Girl with a Pearl Earring, The Blind Side, The Hours

Comedy: Madea Goes to Jail, Our Idiot Brother, Easy Virtue, Tower Heist, Twins, Kindergarten Cop

happy autumn,
et

5 Things

I'm not doing well. Fighting some kind of stomach bug that's got me nauseous 24/7. I've been super fatigued on the couch for three full days. But instead of focusing on the negative, I'm making lists of five things that make me happy.

1. My dog and her unconditional love.
2. Unexpected coupons.
3. Stamps.
4. Human trafficking victim/recovery made the front page of the Trib today!
5. My sock collection-- 150 pairs strong!

be well, and if you're not, be happy anyway.

love,
emma

To ISU

I've been taking it easy -- very easy. But even so, I had a seizure Tuesday at the gym, and a seizure Wednesday in the car. And I've been feeling increasingly fatigued. Last night I slept 12 hours straight, got up to eat breakfast, and accidentally fell asleep on the couch for another hour. I have very little energy and it's expended very quickly. Could this be the return of the fall slide?

Despite all that, I'm visiting my sister at Illinois State this weekend. HOORAY! So excited.

Full list of movie rec's to come. I've been spending a lot of quality time on the couch. :-)

autumn breezes,
emma

Waking Up Is Hard To Do

The first and last hour of my days are utterly useless. I lie in bed, eyes flitting, wondering how long my thoughts will be pea soup. But I rather like pea soup, so eventually I get up to eat and write this.

Tests came back. MRI, EEG, Holter, and Glucose: all normal. Funny enough, I had a full-on (for me) seizure in the neurologist's office after she delivered the news. She is convinced (and we agree) that my episodes are not epileptic seizures, just a manifestation of autonomic dysfunction.

Speaking of POTS, we have set up a new treatment adventure. Dallas, here we come! Here's the link again, for Dr. Mary Kyprianou at the POTS Treatment Center. I will go through a two-week regimen, from October 22 to November 2. I need to read more about exactly what I'll be doing, but it includes biofeedback treatments, about 90 minutes each day. A friend of ours said it was the best thing she's done for her POTSy daughter. Hoping for some positive results!!

Right now I'm pretty limited. Couch-bound, but saving up energy to see friends every few days. Getting out and having fun -- SO important to maintaining a good outlook. Friends keep my mind off my health issues.

Just 6 1/2 weeks until we depart. Let's do this thing!

et

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

Midnight Me

After a tiring day, I regularly go to bed at 11. Eleven-thirty rolls around. Then (good morning!) midnight. I hop out of bed, check out my inspirational quote for the day, and sneak downstairs, because I know I won't fall asleep until at least 5 a.m.

Every day. Five a.m. Oy! So I might sleep 5 to 9, get up, then run out of steam and take a short snooze in the afternoon, but what gives? I'm exercising now; shouldn't that help iron out the bumps in my sleep schedule?

Speaking of working out, guess who's gaining muscle? Huh, huh? Well it might be this 115-pound kid right here! Bam. So long, twiggy self. I feel like setting an arbitrary goal. How about 124 by the the 4th of July! Oh yeah. Make it happen. *chugs Ensure*

Many of my peers have had their graduation ceremonies in the last couple weeks. I won't lie, it's sad. But the key is to let myself grieve a little and let that stuff go. Times like these, I do a grand job of staying off Facebook and away from friends' pictures. That helps a lot.

Some blurry vision of moving objects. Patchy memory. But overall improving. Tonight I shall watch some more of a documentary series I quite enjoy: The Weight of the Nation. It brings up a lot of factors I hadn't even considered. Yay public health!

Good night, sweet insomniacs. Dream of dreaming.

emma

Personal Training Begins

Hello! Some good days, many bad days. Nothing too exciting until POW! Personal training ROCKS! Val, my trainer, has her own history of chronic illness, and she's just generally awesome. I so look forward to working with her for the next 10 weeks or so. We'll be following Dr. Levine's exercise regimen (referenced at potsrecovery.com). We started slow for the first day: 20 minutes on the easiest level of the recumbent bike, 20 minutes of weight training, and plenty of stretching. I had so much energy the rest of the day! I'm really optimistic about the amount of progress I can make this summer. Get that target heart rate! Woo-hoo!

Recommended movies:
In theaters- Bully, The Hunger Games
On Demand- Higher Ground

And this is just too happy to not pass on.

Hope you all are well!

peace,
emma

Howdy

I've been really disoriented the last couple weeks, like floating around my head. I'm officially off the Ambien; yay, no more doing crazy things at night. But I'm only able to sleep a couple hours at a time a couple times a day. So I'm usually up most of the night, watching dramatic (see: hysterical) Lifetime original movies.

Added Gatorade to my diet. Thinking about taking on this exercise regime. Regimen? Reggie-O? Cheerios? Wait, what... brain fog talking. Limiting my screen time. Peace out.

As It Were

It is 9:03 pm. My mind and body are terribly fatigued. It is evening; naturally, I want to sleep. A normal mind/body would be able to sleep. But my POTSy body is not a normal body. And here's how you see the neurological dysfunction at work: I have had no restorative sleep in three days. Even with my sleep medication, I cannot rest.I am up all hours of the night and perhaps fall asleep at 6 am, get up to take meds at 10, and fall back asleep until noon. It's a max of six hours of sleep, when I know I should have twelve. It's painful. I'm in pain. My thoughts are all fuzzy and it's hard to think straight. Such is POTS.

But I am not afraid. And that's what's different about this time around. I'm in pain, but I'm not experiencing fear. I do not feel I am in danger. That immediate sense of panic years ago when I couldn't breathe, when we were thinking about calling the doctor, or going to the emergency room, that anxiety is not there. My blood pressure is low (82/58), but I'm not monitoring it like crazy. Things get lonely and difficult and sure, I get cranky. But I know this is how it goes. I'm adapting back into this routine. Does it suck? Yes. Am I learning a gazillion life lessons? You betcha.

I love audiobooks! And sea lions. And I'm not making sense anymore. Later, gators. Seal ya later. pff haa.

emma

Wee Hours

Oh dumb POTS. It is 3:24 am. Shrug. Listening to music, scoffing at journalists with whom I disagree, considering an attempt at spring cleaning.

et recommends:
Movies: Win Win; happythankyoumoreplease
Documentary: Saving Face
TV Special: Frozen Planet
Interesting New Series: Touch

latest obsession: upcycling

It's an umbrella that she turned into a skirt! Magic! Earth-friendly! :)

Hope you all are well.
emma

“The real voyage of discovery consists not in seeking new lands but seeing with new eyes.”

—	Marcel Proust

Diet

On my menu:

• Saltines
• Vegetable Broth*
• Plain Rice Krispies
• Apple sauce
• Plain noodles (w/ EVOO)
• Eggs
• White toast
• White rice
• Soy sauce*
• Salt* (lots)
• Pickles*
• Graham crackers
• Honey
• Bananas
• Ginger ale
• Chocolate Ensure (with Lactaid pill)
• Water (lots)

*denotes excellent source of sodium
Sure,  it's limited, it's bland, but there are lots of ways to be creative within my vegetarian nauseous POTSy diet. Anything more complicated than these items upsets my stomach and leads to a lot of abdominal pain.

Everything is up-and-down. Weather changes; so do I. Wish I were asleep at this hour. We'll get there.

peace,
emma

Getting By

Mental fatigue has set in. Nothing is quite clear. An hour after waking, dream-drunk confusion persists, mocking my thoughts. All day I feel emotionally numb. My memory loss stings worst when I find myself startled at the sound of my own voice, as if I hadn't thought that thought in ages.

My mom came across an excellent blog: potsrecovery.com (check it out!). This woman completed a rigorous three-month exercise program created by her doctor, and well, I'll let her results speak for themselves. I'm considering trying this out. Eh. Ow. Brain. Need a break.

peace,
emma

Inspire & Entertain

Favorite song from my favorite album of the moment. "Keep our eyeeees... wide open."

Favorite commercial:


Favorite choir in the world:


dance aroumd,
emma

Don't fret

I want you to know that I am at peace. Joy lives in my heart and I am surrounded by calm. Secure, mellow, content, assured. I have never felt so open in my life. I am at peace.

So please do not be sad or afraid when I tell you my POTS is back. Ten days ago, fatigue set in. Then tremors, loss of taste/smell, mild heart palpitations, inability to read for any extended amount of time, etc. Healthy to POTSy in 24 hours. Why now? A medical professional's best guess would be that a bug I'd been fighting for a couple weeks triggered something. Or it could be that God is awesome and having me face my demons again, to prove what I've learned.

Either way, I'm barely functioning. Freak out? Nah, no prob. Just make a few calls: quit my job, drop my classes, cancel the leadership retreat, and let go of that nasty "planning" habit. Check. Done. No guilt, no anxiety. Simplify. Shrug. Love yourself more. Value your health -- physical, emotional, mental, and spiritual. Seek peace. Seek balance.

I don't feel defeated because, well, I'm not. This is my next challenge, the one that pushes me back out of my comfort zone again, out of the driver's seat and back to bed. Back to sibling talks and hours meditating and long nights, such as this, when I can't sleep, and am so grateful for silence.

My mood is serene, blissful, expectant, courageous. I can't control anyone's feelings but my own, yet may I make a suggestion? Do not worry on my behalf. Do not grieve the semester's "failure." Do not get your undies in a bundle over some conundrum that, to me, scarcely exists! I am adapting. I have faith. I am not afraid. I will be fine.

Besides, it's high time I compose the school anthem for the Emma Trevor Institute of Thought and Design. Jolly good tune, you'll see. :-)

emma

Time flies, horseflies, elephant flies

Dear God,
I don't know how or why you do it. Yeah. Wow. Thanks.

I posted on January 1 that I was looking for a job. January 2, 7:30 a.m., phone rings. Two days later, started working part-time for a family nearby.  My charges are two middle school girls whose home life has seen its share of trouble. Money was my original motivator, but I'm gaining enormous perspective on life and childhood. I frequently doubt my abilities to handle what they're going through, but if nothing else, I can be a healthy role model.

Health and psych classes are going swimmingly. First test tomorrow. Topic: stress management. Woo-hoo! Diaphragmatic breathing rocks!

Due to work/school, family obligations, and need for rest/sleep, I have not been able to participate in ESL at all this semester. Big sad face. I miss that community so much. I would much rather be there than in my own classes. Alas, it's something I can go back to, right? Little sniffle. Mustn't dwell on the subject.

Church hopping is fun! I love connecting with people and not knowing whether I'll ever see them again. It makes you seize the moment, you know? Compliment that 8-year-old's sparkly purple lip gloss. It'll make her day. And I may hop there again sometime soon. :)

peace and chamomile tea,
emma

2012 Begins

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

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

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

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

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

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

most sincere wishes for a bright new year,
emma