Thursday, October 29, 2009

Candy Corn

Mestonin didn't go well. :(

So - Plan B - weaning off the beta blockers and then starting Levsin (hyoscyamine). One of these has got to do something. It's like 50 first dates of the pharmaceutical world. Except there's no compatability test.

... ...? oh MAN. The puns are endless.


Autumn-inspired joke from Julia:
"What is the relationship between a pumpkin's circumference and its diameter?"
"Pumpkin PI!"

Happy belated bday, Dad!

Tuesday, October 27, 2009

More Trees

Hi. Back from our first appt with a local cardiologist - Dr. Nazari. Funny, great, personable, but also very honest that POTS sucks and all the treatment is trial-and-error. So frustrating. "POTS is an orphan disease -neurologists, cardiologists, rheumatologists - nobody wants it." [Me neither.]
  • Very happy I only had to do an EKG. Stats: 124/64, HR 50. No blood tests! Yay!
  • Their office is, how shall I say, thumbs-up. Only 5 minutes in the waiting room, and my Rx had been emailed to the pharmacy before we left! :) Communication SO much more efficient than at the other doc's.
  • I'm starting Mestonin (Pyridostigmine) - a drug commonly used to treat muscle weakness in patients with myasthenia gravis. Results should be pretty immediate.
  • Potentially making an appt to see Dr. Suarez in Toledo, Ohio. Dr. Nazari said it's a long wait but worth it. The biggest names in autonomic disorders are there, and the next tier can be found at Vanderbilt, NYU, and Mayo.
  • Interesting tidbit my mom found - "Fifty percent of POTS patients know the exact day they got POTS." Count me in.
And if nothing else works, we know the barometric pressure in San Diego does not fluctuate. Some patients are totally asymptomatic there. Fab.

Um. What else. Pupils are weird again. I'm tired.

healthcare lobbyists!

Friday, October 23, 2009


Some of the old symptoms are back. Headaches, foggy thinking, not sleeping well, short of breath, tremors, Raynaud's. Totally wiped out. How much of this is seasonal? New doctor next week.

LAW 199 - The American Health Care System: Crisis and Reform. CHP is my favorite!


Tuesday, October 20, 2009

My Birthday!

And for this, my 19th birthday, I give thanks. After all we've been through, I'm still here.

What a year.

I want to thank everyone who's been so supportive, especially of the Dysautonomia Petition. We are over 1,100 - and still going strong! I wish I had the energy to acknowlege everyone individually. Here's my great big thank-you:


ha. ha.

(The link again! )

What, a year? Jeez I miss you people. Thank you to everyone who's kept in touch, even in small ways. I think I may have accidently disabled comments on the blog - sorry! Let me know if it's working now.

Celebrate. New day. New year. Ready, go.


Friday, October 16, 2009


Because there is nothing more punk... than a punk'n. :)

Physically the last couple days have been the pits. A lot of the symptoms I developed around this time last year are showing up again - extreme weakness, numbness, ringing in my ears. Resting constantly.

But I'm still encouraged by the POTS petition - we're 950+ ! Yay! Again the goal is to reach at least a thousand, but the more the merrier, really. Don't be shy! Forward it along! :)

Have a great weekend,

Tuesday, October 13, 2009

Gettin Chilly

A balmy 45° in Chicago today. Sigh. You know Chicago -- it's like the Miami of Canada!

Haha. Don't remember where I heard that, but it's funny. (Please don't sue me.)

My extremities are ice-cold -- combating with heating pads, wool socks, and mittens. Go circulation go!

850+ signatures on the POTS Petition. Woot! We're well on our way to 1,000 - thank you so much and please keep sending it on! :)


Sunday, October 11, 2009

Affy Tapples

What a beautiful day for the Chicago Marathon! The human-interest stories continue to inspire me. The individual capacity to overcome obstacles is remarkable.

I could say a lot more, and I'm sure I will later. Gotta rest now.

Favorite video - A Dance for Life - be more than just steps!

m-man I'm lovin this - peace!

Thursday, October 8, 2009

Harvest Moon

There are some better hours. And then there are days when you think Honestly. Papier-mache, in all its noxious, sticky, loathsome horror...yes. Even papier-mache could improve the way I'm feeling right now. haha.

The more emails I get, the more I'm determined to keep speaking out for POTS awareness, funding, patient support, everything. It breaks my heart what we go through. Doctors are often so quick to dismiss the symptoms. Patients are told for years on end, "Oh calm down. You're just stressed. Stop exaggerating. Get over it." Unacceptable. It's bad enough that POTS and other forms of Dysautonomia aren't on the medical radar. But it is nothing short of degrading to suggest and to insist - "The tests were fine...'re fine. Quit whining." Ugh. Totally unacceptable. Time for change.

Thank you for signing the petition to raise awareness for Dysautonomia! (Here it is again: Dysautonomia Petition) So far, over 700 signatures from around the world, keep passing it on! High five! :)

Stay snazzy,

Monday, October 5, 2009

Crunchy-Looking Leaves

Oh. Hi. Time for a semi-substantive update?

Unpredictable. Cold extremities, tired, headaches, chest pain, palpitations. Numbers are okay. Still doing the tilt-training, lots of sodium and fluids, 5 Hour Energy, swimming on occasion. I'm getting by.

School is...not looking good. Rar. Stupid body. Prayer and patience, keeping a sense of humor.

SNL - Threw It On The Ground - hahaha

peace up, a-town down,

Saturday, October 3, 2009


"This is wack."
"No. Just the regular kind."
- teen girl squad


Thursday, October 1, 2009

October Lovers Club

October Lovers Club is, in my humble opinion, the best club at U of I. I didn't get a chance to officially join, but truly, I hold it in high esteem.

I love OLC because it celebrates everything about October, autumn, and the unity of a college campus, particularly a college campus surrounded by corn. And apple orchards. And an abundance of horticulture experts. But mostly corn. Welcome to Illinois, the cream of the crop. There's basketball season...and harvest season. Which one do you think gets more attention?

And those rumors explaining why the Undergraduate Library was built underground... yep. All true. As the song says, You can't throw shade on the corn!

I'm not kidding.

Blog titles this month will honor October's greatest features. Honoree #1: The October Lovers Club t-shirts.

morrow plots,