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

Hey. It's July.

 So much to catch up on. Bullet points! Pow!

• The seminar went well. It was a huge risk for me, physically, to try to be active and attentive for 3-4 days. The schedule allowed 7 hours for sleep... when I usually need eleven! It was challenging to the point of almost impossible, and I was in bed for 3 days after, but it was worth it. I got outside my comfort zone. I met strangers from across the US and Canada and bonded with several individuals. I witnessed others' breakthroughs and affirmed my own dreams. It was a good experience. But I am going to be in a better place before I do something like that again. Oh, the bruises!

• I'm decreasing  the Midodrine dosage further. Yay! From 20 to 10mg/day. It's Day 7. Things are going pretty well overall. I've kind of been through this before, so I know to keep an eye out for mood swings. My family has learned to heed my warning. Sometimes I'm tired or anxious or sensitive to sound. It's not terrible, but it's not fun. Makes me want to get back into a healthy lifestyle and practice preventive health.

• Swimming/stretching, 25-30 min. Gotta get back into yoga soon.
• Weight: 109; 110; 110
• Appetite: much improved! Dessert, please!

• Recommended films: Shawshank Redemption (ah! music therapy!)
• Currently reading: Crazy Love by Francis Chan

love,
emma

Mercury

I'm doing great. Totally excellent. I haven't written in two weeks, that's how excellent. :) I'm working as a file clerk for the firm, hanging out with friends, reading-- I could go on! I feel like I'm making huge strides towards what now look like realistic goals: gaining weight and building muscle, being able to drive, getting back to school/work and a normal life, getting off medications. It's still a day at a time, don't get me wrong. But my mind and body have proven so resilient after working three days this week. I'm so excited! Still keeping an eye on my eating and weight. I'm looking forward to seeing the Michigan doctor in a couple weeks.

later days!
emma

Chicago Children's Museum

Snowball (high school retreat) was excellent. There were a couple instances where I was tired, but I was able to be so active and involved; I'm so proud of myself and how much I've progressed. I love camp. I love meeting new people. I love meaningful discussion and taking steps (and leaps!) out of my comfort zone.  I'm so grateful for the entire experience and look forward to more Snowball weekends in the future. Doing well since, only a couple bruises! Keeping busy and social, which is wonderful.

This morning I went in for a planned procedure - an upper endoscopy. Surprisingly enough, my first experience of being on a hospital bed while they roll it down the hallway! "My name's Jenny, I'll be taking you to the procedure room" "Like down the hall?" "Yes." "Jenny, is it crowded?" "No." "Can we go faster?" Wheeeee!

The other nurses were awesome too: Hilda and Bernadette. "Emma, this Bernadette. She the BF. BF! Yo' boyfriend, HA." They gave me Demerol and a saline IV and something else.  I remember the oxygen tubing in my nose, but nothing after that. It doesn't hurt too much, just uncomfortable when I hiccup or cough. I've been sleeping and drinking lots of water. Still a little zonked out. We should get results... soonish? I don't know exactly what they're looking for, just blockages in the stomach that could explain my slow digestion and abnormal weight loss.

Yeeaah Snowball!
et

Hey Juliet - LMNT

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

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

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

emma

Saturday in the Park - Chicago

Quickie update.

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

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

Happy Dad's Day!
em

Don't Stop Believing - Journey

Oh heavens. Too much to write.

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

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

But it was still an enjoyable evening! Highlights:

• Laughing pins crack me up.
• FREE CANDY.
• Sweet Home Chicago!
• Video intro - Ellen runs all over the city.
• Ellen waved directly at us! :D
  
• She TOTALLY aimed that prize-winning tennis ball at me. The guy next to us got it though. Psh. As if that matters. I know she meant it for me!
• I was picked to ask a question. And it was a good question. But they ran out of time. Yes, they ran out of time after six people were like, "OMIGAWD! Ellen! hihihi...umm...we have the same birthday! Will you have a birthday party with me?" Like what the heck kind of waste of a question is that. Six questions about birthdays. Doy, people. Missing the point.
  
• Got to sit in the front row after the show...pretending we'd snagged a tennis ball. The pair next to us were kind enough to adopt us for the moment. Haha. We pull bits like this all the time.
• I got a picture with Nick Cannon! [DJ, main guy from Drumline, etc]
  
• Next time we will meet Ellen, I'm tellin ya!
  

Last night's tix were for my mom's birthday, surprise from my dad ...and tonight's Jersey Boy tickets are for Father's Day, surprise from my mom! Two big nights in a row? What a coincidence! I am excited, but resting resting resting! Plus we've got my next Dr appt tomorrow morning. PHEW!

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

Keepin my feet up and my spirits high,
emma

Poker Face - Lady GaGa

Tony Tony Tony! Ahh!

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

Observations:

• Performances from Hair and Billy Elliot were outstanding!
• West Side Story is timeless. Mambo!
  
• Liza Minnelli needs HELP.
• When that guy hit his head on the scenery [broke his nose!] -- terrible, I know -- but it was so funny, I just about lost it.
  
• People with British accents are about 10 times more likely to win a Tony...or any American award for that matter. They just sound so delightful.
  

This morning I had SO much energy! I'm not sure how to describe it; again, I'm trying to emphasize that I'm not better yet. Once in a while I just get a couple hours where I feel really hyped up. Just part of my up-and-down cycle I guess. Crashed pretty bad this afternoon, but it was nice while it lasted.

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

let the sun shine in,
emma

Catching Up

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

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

My Top 3:

1. How are you feeling?
2. I'm thinking of you. / My heart goes out to you. / My prayers are with you. / etc
   
3. That sucks!

And I'm totally serious about saying it sucks. Awkward silence? Not sure what to say? "This just sucks." See? =)

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

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

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

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

But Julia is awesome!

Go Cubs Go!
emma

Blue's Clues

I need to find some way to deal with the pain.

Last night I had another weird dream. I woke up with a horrible ache in my neck and shoulder; I think I pulled a muscle or two. Spasming, twitching, and a brief Charlie Horse I think at one point. After an hour or so, I had the strength and presence of mind to reach for my cell phone and call for a family member to bring me some ice packs.

The muscle aches and sudden contractions have been dreadfully painful today -- spreading to my mid-back and upper arm. Constant icing, Tiger Balm, Ibuprofen, resting. Ugh. I didn't take a shower today because my upper body is in so much pain. Standing up for a few minutes is difficult, but lifting my arms above my shoulders would be near-impossible. Some people describe this pain as "coat-hanger pain" - pain in the upper back, shoulders, and neck.

Time for another Symptom Clarification! [Pretend it's a game show.]

Palpitations - abnormal awareness of the beating of the heart (Wikipedia, 2009).

When I say I'm having heart palpitations, they generally

• are painful, pounding
  
• are "loud" or in my ears
• feel faster than normal
  
• sometimes occur in strange places, e.g., temples, neck, ankles, behind my knees, etc.
• frequently occur along with headaches, chest pain, and joint pain.

Saw a friend today briefly. Fun to catch up, but visits are complicated. She is very empathetic, but again, no one is really going to understand the whole story. And I know it's not good to take things so personally, although given the unique circumstances, you'd see it's hard not to.

Comments like "So have you finished your book yet? Now that you've got time to write a book!" are not unfamiliar. They have tons of love behind them, and are meant to compliment my writing (I think). But at that moment I'm in so much pain, and I'm short of breath, and my thinking is foggy...I'm not doing well.

What are you kidding me? Time? Does everyone think I'm just having fun, sitting on an unspecified amount of free time here? I'm not sure if they understand. If this is an "opportunity," it's a twisted one at that. Distraction and escapism have become close friends.

I'm still trying to find a way to explain everything to my friends. "Constant pain, chronic fatigue, and we know almost nothing about it"-- I'm not sure if that says enough about POTS. Sheesh. A prize to anyone who can explain it in 3 sentences or less. (And for you grammar-lovers: No Semi-colons! An independent clause is an independent clause. Period!)

Oh, I just crack myself up sometimes. :P

Anyway, enjoy this video. Danny Gokey + Blues = Exceptional!

http://www.americanidol.com/videos/season_8/performances/danny_gokey_come_rain_or_come_shine

I dig the 15-piece jazz band,
emma

The Weekenders

My symptoms don't play nice. Ugh. I had to miss my sister's voice recital because my palpitations were so bad. I really wanted to go out with my family for my mom's birthday, so I went even though I wasn't feeling up to it. Joint pain got really bad, especially my shoulders and neck.

And it kills me how prideful I've become; I try to act like I'm fine. I was less nauseous than usual, but I ate way too much. I didn't want anyone to notice any abnormal behavior, for instance not trying the appetizer or not finishing my piece of cake. Against my better judgment, I didn't even ask to go home early. It's a challenge for me to be sitting up that long. I get fatigued so quickly, and I was already feeling unwell.

Today's been a bummer. The usual suspects.

Oh! I meant to write about a story featured on Oprah today -- a woman suddenly contracted Necrotizing Fasciitis (flesh-eating bacteria), and had to have a mastectomy and her arm amputated. Some of you may know that I had Necrotizing Fasciitis when I was five, along with my chicken pox. I still have lots of chicken pox scars, and a scar on my left hand from the I.V. -- not much compared to what this person has endured. Anyway, I guess it's just one of those things to help keep things in perspective.

with all my limbs,
et

Mary Poppins!

Holy moley! I am so happy and amazed I was feeling well enough to go to see Mary Poppins downtown last night. It'd been a week of lows since I started the Florinef, and let me emphasize that I'm not cured or anything, yesterday was really tough too, but hooray! Um, bullet points.

• Friday 8am - after lots of bad dreams, finally got up and had breakfast. Feeling really nauseous and drowsy. Tried to go back to bed, recurring dream where I can't breathe. :(
• 10:30am - got up, showered, got dressed. Hanging out on the couch and noticing I don't feel nearly as crummy as days previous.
• 1pm - decide I'm gonna try to go to the show
• 4pm - not so sure, migraines, fatigued, nausea
• 5:45 - driving downtown!

The show was great-- so much talent!! I don't want to give anything away, but it was very different than the movie. It was hard to try to adapt to the bright lights and applause -- my eyes and ears are so sensitive. I may have been very cranky to my family too. Sorry. I was totally wiped out by the time we got home (almost midnight!), and my neck, shoulders, and back ache. But I think it was worth it! Plus we were in the perfect seats!! :)

The best part was during a quiet scene...a little boy in the row ahead of us started making noise. My parents thought he was snoring, but really he was just making farting noises on his arm. What are those called? Raspberries? My sister had no idea what was happening. But I could not stop laughing!!! I had to bite my lip til it bled, it was so funny. And then of course, the old woman starts singing "Feed the Birds," and I'm doubled over, tears in my eyes. All because of the kid making fart noises.

I shall never forget him.

I can tell I'm going to have to stretch a LOT today -- I'm pretty sore already. But I am so happy that for the first time in months, I've been able to do something like this. I even stood in line for the bathroom!! Did I feel pretty miserable? Yes. Palpitations, stomachaches, joint pain, the works. Even during the show, just sitting, I felt the need to lie down...BUT this is the first fun outing I've have in a long time, and it was fun.

**To Prevent a Misunderstanding!**
I had a decent, tolerable day. This does not mean that I'm cured or that I'm having an easy recovery. Most POTS patients have up-and-down days, weeks, and months for several years. I am thankful that the first "up" day in 10 days fell on the day we had Mary Poppins tickets. But *please* understand that my condition does limit me severely, and I cannot do this kind of thing every day. I nearly didn't even go yesterday!

Phew. Okay, that's all for now.

Chim-Chim-eree!
emma

Well...That Settles It

Today my chiropractor said, "Emma, you should be on *light duty,* physically and mentally. Once you have two solid weeks where things are entirely better, then you can go back to reading, unpacking, school, etc."

(Well, essentially, that's what he said.)

HA!

Silly parents and other adults prone to wigging out have been goading me to attend CLC classes, like just for the heck of it. Like just to make sure I'm not afraid of school, or allergic to school.

People, please. I survived Stevenson. I'm a nerd. You obviously don't know me very well. I'd rather be taking 25 credit-hours at U of I than sitting here, on my butt, alllllllll dayyyyyyy looooooong....watching movies and TV shows.

I'm a freak for learning. Period. But I can't go to class if I feel like I'm dying! If I'm seeing a doctor 3 times a week and he's saying WHOAAA hold it! You keep messing up what I just fixed!

Including my EYES!! yeah. those are kind of important for reading and learning and test-taking. sheesh.

so there you have it, folks. To the warped mind of this majorly-injured 18-year-old, it's okay to take a break! Especially if it's to take care of your spinal column.

sheesh again. people are so freaked that i'm going to be "behind" on life. Yeah, well I'm feeling pretty behind right now. Let's not screw it up by "strongly encouraging" (forcing) me back to school too soon.

thank you very much, ladies and gentlemen.

going to see Slum Dog Millionaire tonight!! and sit in the last row in the middle so I won't hurt my neck! YAY!

happy weekend, chums.
emma

Kind of a Big Deal...

Today a very dear friend of mine is taking me to see a show!! On stage!! In public!! As in, this is the first time I've left my house to do something fun in...oh...6 weeks I think?

Excited. Also very nervous I might fall asleep or need to lie down. Hey, it's a matinee. I'm sure nobody's expecting a standing ovation.

But! I slept really well last night and am seeing my chiropractor right after. Golly. I'm so happy to be putting on, like, real clothes! and makeup! ahh!

In general, I have a little more energy today than yesterday. Talking to friends at school perked me up a bit. :) AND my toes aren't numb today! Yes!!

off to the theatre!
emma