Sunday, November 29, 2009

The Paper Bag Princess

Sleepy. Trying to eat more. Sore from swimming. Numbers are looking good, about 115/75 and HR 80.

I would like to thank Pandora radio for randomly selecting a zillion songs about Traveling, Journeys, Moving, Going West, The Ocean, California, and Boardshorts. If this trip doesn't work out, hey. Still good tunes.

Four days. Yeep!


Wednesday, November 25, 2009

Silly Tilly's Thanksgiving Dinner

I used to read this book every day when I would babysit. Every day! Oh chilluns. I miss them.

Sat: more energy! Julia and I did laundry and watched Sunshine Cleaning. In her words, "AHH! THEME NIGHT!" haha
Sun: tired, sore.
Mon: Julia sick. I swam.
Tues: meh, same old. Exhausted.

Today looks good so far. I got 10 full hours of sleep! Yay! I haven't been sleeping well at all lately.

Getting psyched and nervous for the big trip. Guess who's gonna be there the same time as us? Aunt Lauren! Carleen! Jerry Seinfeld!! Oh yes. It's a sign. The whole world is flocking to San Diego. haha

Happy Thanksgiving! Hope you are well.


Friday, November 20, 2009

The Librarian from the Black Lagoon

Increased Celexa to 20mg. A little better today?

Temperature is about the same as always. Blood pressure is good. HR is getting higher though, as expected I guess, dropping the beta blockers.

The intro to Owl City's Fireflies needs to be added to the appendix of This Is Your Brain On Music.

dewey decimal,

Tuesday, November 17, 2009

Curious George

Mom and Jimmy have the flu. Hope they feel better soon! Keeping my distance.

My mom found a great compilation of Dysautonomia symptoms here: -- first real explanation we've seen for hair loss: "due to decreased blood supply to hair follicles." See, it's not stress. Circulation! music is addictive. I was given fair warning. But it's so good! Definitely helping get me through the day. :-)

refuse the flu!

Saturday, November 14, 2009


Hi. Still here. Weak and drowsy; tremors. I was saving all of my energy to see Julia's show, Les Miserables. Vocally stunning. Very emotional for me too, since I've had to miss so many events. All week my sister kept checking in on me. "Rest! Rest!" I'm grateful I got to see the musical, although it was extremely difficult to be out for 3 hours. My circulation's been acting up the last couple weeks, and the blood in my arms feels like ice water - a new symptom. At one point during the second act my entire right hand went numb. Scary, but also just upsetting that I couldn't applaud. Body, sometimes you...agh. You fail me.

I write this blog for a number of reasons, but mostly I'm just trying to be open and honest about what it's like to have POTS. It's ugly. And it's not fair. It's not fair to anyone!

The good news is some friends of ours just got back from San Diego - one who has arthritis and another who suffers from migraines - and both were symptom-free while they were there. Oh my. Please let San Diego be the Promised Land!

Start the countdown - 19 days.

My sister is awesome!

Monday, November 9, 2009

The Giving Tree

Today we went to see Myron the shaman. We had no idea what to expect. It was a Hail Mary pass, trying out this type of treatment, but I think the day's been rewarding. It's healthy to be open-minded about all cultures and their respective views on healing. Western medicine just doesn't jive with everybody. I believe God seeks to bring us peace.

I'll save the long stories for another time, but basically the shaman established and interpreted some resonances. He read that I'm very disturbed by the fact that the world isn't fair -- isn't even close. And he reminded me that there's a difference between empathy and carrying burdens. True and true.

Good, weird experience. So we'll see in a few days if I'm feeling better or more energized. Hope and pray!

The shaman also mentioned that he's going to San Diego this winter too. And even with his worldwide travels, he's never been there before. Coincidence? Hmm...

nourish your soul,

Saturday, November 7, 2009


Phew, it's been a rough week. Getting a few thoughts together:

1) The writers of the POTS petition submitted it earlier this week. Thanks again for all the support!

2) Adjusting to Celexa - ew. Nightmare. Hanging on to the fact that others have done well on it!

3) Greg Page is performing again! He is the POTS sufferer of most notoriety, being the co-founder of and the original Yellow Wiggle from the Australian children's band The Wiggles. He was diagnosed in fall 2006, at which time he had to leave the Wiggles to focus on his health. Sounds like he's recovered enough to be back touring with another band. Yay! Success stories are my favorite! Here's his website.

4) I got a call inviting me to participate in some POTS research in NY! I don't think we'll be able to make it, but POTS and/or Chronic Fatigue friends, let me know if you're interested in participating in a medical study in January. More info here.

To Madison tomorrow to see the shaman. Getting excited for Les Mis this weekend. Go Julia!


Wednesday, November 4, 2009

Ramona Quimby

My mom and I will be traveling to San Diego in the first week of December. To take this trip is a risk to my health and a huge inconvenience. It is solely to see if my autonomic system can function properly. We are all desperate for something that will help my medical condition. It is NOT a vacation for me and certainly not for my mom, who will still be working while we are away.

My illness has been excruciatingly difficult for my whole family. Most people could not possibly understand.

A challenge to stay sitting/standing. Off the beta blockers and started SSRI Celexa. Adjusting for the next week or two.

Send more brain to my oxygen. More info later!


Monday, November 2, 2009

The Sneetches

A friend from church saw the shaman today - very encouraged. Got an appt for next week!

I now have the ability to hear the entire overtone series... in a lawn mower.

Fear not, citizens. This issue jam-packed... with entirely useless superpowers.

stars upon thars,

Sunday, November 1, 2009


November titles will feature a few favorite characters from children's books.

I'm not doing well. The symptoms are all too familiar -- heart pounding, tremors, muscle twitches and cramping, light/sound sensitivity, brain fog, exhausted beyond belief. Resting, trying to stabilize my breathing patterns. I know I sound like a broken record, but it was exactly this time last year... there HAS to be an environmental or seasonal component. (It's not stress, that's for sure.)

Looking into visiting a shaman (healer) in Madison. Anything to manage the pain and get back to a normal life!

It is the day after Halloween. Orange party decorations are now 75% off. Illini fans, you already knew that. (We beat Michigan?! Yeah!!)