Tuesday, November 22, 2011

Holy cow

Just realized I haven't written in a month. I am doing amazing. I'm driving. I'm doing the babysitting/nanny thing. I'm tutoring. I'm getting active in my church. I'm working out. I'm running errands! All by myself! Coming and going as I please! I am so proud of my brain and my body and God's spirit in me. What am I going to do with myself. Life is so full of possibility. I have much to be thankful for. Hope you are celebrating your blessings as well.


Wednesday, October 26, 2011

POTS News Video

ABC 7 Chicago - POTS in teen girls [11/08]

Crazy coincidences: 1) This aired the same week I had to leave college because of POTS.  2) I know that girl's mom! And not through POTS! Small, small world.

I can't believe I hadn't seen this video until now. Thanks to JW and HC!


Monday, October 24, 2011


Article on POTS featured in the New York Times...and a POTSy's response.

I'm doing great. Birthday joy. Took a couple days this weekend to nurse a cold, and now I'm right as rain. Driving all by myself. Getting stuff done. Making plans. Enjoying the beautiful weather. It all feels a little unreal.

Today I ran into Alternate Universe Emma. She never crosses my mind anymore. I used to keep a mental map of where I'd be if I were her. But I got rid of that map last year-- a breakthrough to say the least. I'm happy with where I'm at, and I'm seeing more and more a sense of purpose in my being sick and all the struggles that went/go along with it. Alternate Universe Emma doesn't exist. I thought I got rid of her.

But when you catch up with someone for the first time in four years, you see through their eyes that old version of yourself. And you see the college senior that they've become, you hear the language you might've been using yourself. Internship. Student teaching. Studied abroad. Graduation. GRE. Certification. Job offer. Starting salary. Dating. Master's. Engaged. Moving.

I think it's the time warp that gets me most. Yes, chronologically, I understand I am twenty-one. But my 21 is still like...18. And my 18-year-old self predicted my 21-year-old self would be an accomplished musician and scholar and whatever else.

And I'm not. And I'm okay with it. I'm genuinely content, fulfilled even, where I am today. I love ESL. I love Snowball. I love church-hopping. I'm not a college student. I'm humbled. I'm okay.

But Alternate Universe Emma is not okay with it. She would've wanted the GPA, the degree, the recommendation to direct a prestigious youth choir. She had a four-year plan. She had a four-year plan, and it failed! She failed!

Maybe I'm rambling.

Maybe I still have a little to grieve.

Maybe it's too easy to try and compare myself to my peers, to my old expectations of myself.

Hm. Food for thought.

carrot cake,

Friday, October 14, 2011

Hey there.

Things are really looking up. Went shopping. Three hours. No pain. No fatigue. WHAT?! In the past week I've started driving (short distances/daytime) and it's SO exciting just to go run an errand. Progress, people! Freedom, people!

I'm trying to not get too far ahead of myself; today I had to take a day off and rest up. Managing time and energy are hugely important. It'd be way too easy for me to fall back into over-excited and over-scheduled mode.

People at home are going through some rough stuff. I truly admire the kindness of our friends, family, and neighbors. Thank you, whoever's reading this, for just practicing kindness in your day-to-day life.

If I were to make a mix tape for you today, it would include:
"Everday People" performed by Bar Scott


Sunday, October 2, 2011

I'm doing... amazing.

I have had the most preposterously excellent week. In the last 48 hours, friends have seen me suddenly transform into an able-bodied person. It's ridiculous. I don't understand it. Even with all the rain! It's crazy and wonderful and I love it. I LOVE IT!!

What's on my mind:
  • I'm buying fair trade chocolate for our trick-or-treaters!
  • I love fair trade clothes. They have a soul. I'm trying out several online retailers... will let you know which one's the best. :-)
  • Here's another reason to boycott American Apparel.
  • Love church. Hate "Money Sunday." There are lots of ways to give. bah.
  • Snowball has begun and I'm so excited!
hugs and sparkly things,

Friday, September 16, 2011


I heart my ESL students. I think they'd heart me more if I didn't have a runny nose. Gonna be resting up this weekend... excited to meet a real-live music therapist on Monday.

Currently reading: Pretty much any catalog that describes autumn scents or the wonder of flannel sheets.

Adding to the grocery list: apple cider

Sunday, September 11, 2011

Sunday Best Season Finale

I'm in the process of learning -- slowly, with much difficulty-- how to exist in the midst of pain and suffering without taking it on.

Pandora is my music therapist. Currently listening to: The Hold Steady

Currently reading: Sing You Home by Jodi Picoult; a biography of St. Patrick of Ireland

Sunday, September 4, 2011

Labor Day

I've had a great week! I think I've left my house every day for the past 10 days in a row. Woo-hoo! I can make appointments and keep them. Oh, it feels good to say that. My sister was kind enough to pass along her cold to me, though, so I better knock on wood if I want to keep my streak going.

ESL is awesome. There are about 13 students in the class, age 23-65? and from three continents. I thought I'd be only observing, but now I am an "assistant"... I got to write on the board and everything! I love language. I love students! They work so hard to understand and be understood. The hardest thing for me is idioms, when to explain them or avoid them. Our teacher said, "You're keeping me on my toes." That led to a whole can of worms. Ha, I'm full of stories now. I want to employ some vocal warm-ups in the class at some point. It could really help develop the students' sh-, ch-, th-, f-, v-, l-, and r- sounds.

Hehe. I am a dork. :-)

I'm so thankful for everyone who's been giving my family oodles of support. Have a great long weekend!

Currently reading: Girl, Interrupted by Susanna Kaysen; a book of quotes by African-Amercians

Recommended movie: A Family Thing (James Earl Jones, I'll watch that guy any time.)


Saturday, August 27, 2011


Take a break from the trauma drama. Hope this leaves you, too, in stitches.

Wednesday, August 24, 2011

ESL Starts

My family's been going through some tough stuff. I'm doing okay. Coping. Wish I were an able-bodied person.

This week I'm excited to begin a new adventure into the world of ESL (English as a Second Language). Twice a week I'll be observing an ESL class, just for fun, to learn how people learn. Education and inter-cultural communication are big interests of mine, and I expect the community will be an encouraging place for me.

Currently reading: Plain Truth by Jodi Picoult

Choreographing: World on Fire - Sarah McLachlan

Struggling with: short-term memory loss


Monday, August 15, 2011

Info on POTS Doc

Hello POTSy friends. Just got an email from a happy patient. I haven't heard of or seen this doctor myself but wanted to share her good news. Here are highlights from the email... hope it helps!

"Luckily, I pushed on and saw this new guy. He is interested in POTS, and very well read in everything POTS- the meds, the side effects, the testing, the new medicine that Cleveland clinic is using, POTS during pregnancy, POTS syncope, literally, the guy educated himself in EVERYTHING when it came to POTS.

"Seriously, this guy might be the best doctor I have ever seen, POTS or any other kind.
"That all probably sounds like a sales pitch! I swear, I don't work for the guy...lol. Anyway. His name is Barry Laskoe, he is an EP, a DO, and he is out of Advocate Lutheran. I see him in Park Ridge or Glenview and he is in Buffalo Grove, too."

Sunday, August 14, 2011

The First Step of a School Bus

Weight: 111

Currently Reading: The Yada Yada Prayer Group by Neta Jackson

Currently Watching: (Documentary Series) The Up Series - Seven Up, 7 Plus Seven, 21 Up, etc.

Feeling: crummy

Friday, August 12, 2011

Bidders Row

Rough week. Feeling numb. Don't feel like talking. Just getting by, day by day.

Sunday, August 7, 2011

Kennel 84

I haven't had reliable internet access lately, hence the late update. I'm doing ok. Lots of family craziness. I love my little cousin Rhiannon! My thinking.is kinda in-and-out, mushy, numb. Sometimes I'm doing great, and sometimes I get tired and my eyes are sensitive to light. Like right now, I need to get off the computer. Later!

Currently reading: The Five People You Meet In Heaven by Mitch Albom

Documentary of the Week: For the Bible Tells Me So - The "church's" response to homosexuality. [Hate crimes are hate crimes. WWJD! Sheesh!)

Tuesday, July 26, 2011


Getting through the physical, mental, and emotional turmoil of transitioning off meds. It hurts. I cry. My fuse is very short. Sometimes my vision gets swimmy and everything is overwhelming. I'm living very much in the spirit of one day at a time- keeping my goals, plans, and expectations at a minimum. I have a good couple hours every so often, but the lows are low. Breathing.

Currently reading: Keeping Faith by Jodi Picoult (love this so far)

Recommend: (film) Tuesdays with Morrie. (Now I have to read the book too!)


Wednesday, July 20, 2011

47 Sugar Lane, Toronto

Very fatigued. Been lying down all day. Missing church tonight. Frustrating. Things are going to get better soon! And soon I will not be as cranky as I am right now. This is just temporary, self. Don't forget.

I know it's the weekend of my sister's musical when bobby pins litter the hallway and hairspray suffocates the bathroom. Break a leg!

Currently reading: Nineteen Minutes by Jodi Picoult

Looking forward to many discussions about: (movie) The Adjustment Bureau


Sunday, July 17, 2011

Good-bye, Midodrine

It is day 3 of (wait for it...) 0mg Midodrine. Woo! I'm really proud of the progression I'm on. Getting off the meds is tough stuff, as always. I'm feeling unsettled, scratching my head and nose for no reason. I occasionally lose feeling in my feet, and my extremities have returned to their color-changing ways. That's right, you didn't imagine it. My knees to ankles resemble your favorite gradient dip-dye beach towel. You know the one, right? Apricot, pink, red, maroon?

I'm reading melodramatic books, hanging out with my dog, sleeping 10+ hours a day. Couple weeks of transition and I'll be solid.

At least one can hope.


Saturday, July 9, 2011

Where Am I?

No energy. Very cranky. Not me. This is not me! Stupid drugs. I knew I always hated you.

My personality may return in another week. Grf. Watching sad movies until then.


Thursday, July 7, 2011

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

Tuesday, June 21, 2011

Summer Solstice

I am officially a church hopper! I was so excited to be able to visit two new (to me) churches last week. Presently I am house-sitting and cat-sitting. Attending a seminar this weekend (NOT on the topic of house/cat-sitting, silly). Excited to meet people and hear speakers, but downright scared for the long days. Hoping it'll be okay!

Sleepy. Easily fatigued. Upset stomach. Slow circulation.
Weight: 112
"Swam" (stretched) - 25 min

Need to get in the water more frequently. It's so helpful for my cold extremities, not to mention the exercise benefits.

catch ya later!