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.

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

bahaha
et

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

Happy belated bday, Dad!

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!
emma

Trees

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!

et

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:

THANK YOU!

ha. ha.

(The link again! http://www.gopetition.com/petitions/dysautonomia-awareness.html )

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.

et

Pumpkins

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,
emma

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! :)

best,
et

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!
emma