Monday, March 28, 2011

The Cherry Tree

Endoscopy results: No infection. No Celiac. Keep doing what we've been doing.

Shrug. Fine. Thank you.


Thursday, March 24, 2011

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!

Thursday, March 17, 2011

Adler Planetarium

Today I played with friends, nerf guns, and neighbor kids.
Tomorrow I staff Snowball.
My backyard bathes in moonlight.

praise much?

Sunday, March 13, 2011

Apt 309, Apt 613

I don't know how to say this. I've been so alive in the past four days, it's unbelievable. Physically, logically, it doesn't make any sense. Sleeping is hardly better; eating is definitely not better. Yet I had an amazing weekend. It's crazy! So happy to dance the night away with my family, church friends, and new friends from the firm. Talk about the inexpressible joy of Normal Moments.

Maybe more are on the way, maybe not. Either way- WOOOO!


Wednesday, March 9, 2011

Parking Garages

Doing well. Prepping for Snowball. Drinking protein shakes. Determined to get more than 5 hours of sleep tonight.

Monday, March 7, 2011

Kildare, Ireland

TV recommendations:
  • Secret Millionaire Undercover, a millionaire volunteers beside unsung heroes.
  • Who Do You Think You Are? Celebrities learn about their ancestral roots.
I'm doing all right, taking care of myself. The diet rec's plus Biotene are helping. I'm struggling muscularly. Deconditioning = bad. Reconditioning = really hard. Planning to get back to my pool workouts soon.

Emotionally, this thing ain't no fun. Last week I had a couple hours every day where I'd just go numb. Like curling up into nothing and trying to escape. I say this a lot, but it's true: I have no sense of how much time has passed. Then I'll get an email: "Registration Information for Fall 2011." Oh my heavens. Is that what year it is? 2011. Many of my friends are graduating this spring. In May. That's in two months. How much is two months. Eight. Eight what? Eight SMTWTFS pill packs.

The sound of my pharmacist's voice is familiar, is comforting. He's the only one who calls me Miss Trevor.

One day I will teach.

I know what it's like to be lonely, to feel invisible, to feel disgracefully visible. Spinning in circles on the treasure map, up to my knees in white-sand-turned-gravel. What? What did I-- I will move on from this, right? The lows are low. But my life holds meaning. My gifts are special. My existence is important.

Small. Keeping strong.

Wednesday, March 2, 2011

Admirals Club

The test was easy as pie. It was fun to chat with the technician for a couple hours. I love talking to strangers! 

Results: I have mild delayed gastric emptying.

Suggestions: Eat small frequent meals (5-6x/day); avoid greasy and fried foods, high-fiber foods (including most fruits/veggies), and dairy products. I will schedule a EGD (upper endoscopy) for next week.

I'm struggling a lot. I'm weak. Stairs and standing were tough today. It's hard to eat. I'm drinking gallons of fluids to combat "dry mouth" - literally I'm just not producing saliva. Dad got me some Biotene and I'll start using it tomorrow to help ease that symptom. Stomach aches and fatigue too. Yeah. Not pretty. 

I'm fighting. And I have to keep fighting it where I'm at. I'd planned and looked forward to going on vacation this weekend, but I'm simply not healthy enough to make it down to Florida. It's upsetting, to me and to everyone. Plenty of tears been shed on my end, that I know. But I have to listen to my body. As we've seen - over and over! - POTS is unpredictable. It doesn't understand calendars or important events or even the fact that I sometimes like to sleep past 5 in the morning! This whole thing is painful and ugly and not fair.

I'm in no condition to travel this week. I didn't (and don't) have a say in that. It's just the way it happened. Timing, you stink. I wish I had a choice. I wish I had control. We're all just rolling with the punches.

I'm gonna get stronger. I will. I will. I will.

darn right, I will.


P.S. latest choreo involves a luggage carousel. Title: "Baggage Claim."