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!

love,
emma

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,
et

Eloise

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!!)

skipperdee,
et

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