17 April 2009

We finally found the right doctor!

So wow. It's been 7 days since I posted.
A rough 7 days.

So Saturday was actually really really good. I didn't have any of the full body attacks, but I did have two minor localized attacks. I also got to go out with Ms. E for coffee which was nice.

Sunday was okay until about 6 o'clock, when I woke up from my evening nap. I couldn't move my legs, so I had to use the chair until bedtime.

Monday. Wow, Monday was rough. So when I woke up, I was starting into a full body attack.
Brandon and Tori were home, but it was rough to say the least. That one lasted until probably 2?
Then around 2:30-ish I had a fugue state, left the house, wandered, and collapsed into another full body attack. I was taken to MB, and was there for another 9 hour trip. We got home at like...11?

Tuesday was....okay-ish. I think. I don't remember what happened Tuesday. Mostly recovering form the long attacks, relaxing strained muscles, and such.

Wednesday was good. I moved back down to the 10's which has been the right choice. I went with Bro to go get his trailer so he could go get his new car, then home. Then sleep. lol.

Thursday was a grand day. So first, I had my appointment with the sleep clinic in Bellevue.Everything about it was awesome, except the part where they had daddy make me go out. That sucked a little.
But they listened to us. Actually listened. Sat for 2 hours and listened in fact. The NP, who seems to be our main caregiver and the person we'll be interacting with, was so nice.
After she was done with an extensive history, she called the doctor right away.
Without even two sentences apparently the doctor confirmed what we've know for quite some time. She said without a doubt my symptoms were Cataplexy.
Then, because of a miraculous cancellation, I was able to be scheduled for a sleep study on Sunday, otherwise their next available spot is SEPTEMBER.
Wow, Wow, Wow,

The doctor also said she'd be willing to try a drug called Xyrem. It's main ingredient is GHB. But, it's shown great success treating people who have Cataplexy/Narcolepsy. It basically knocks you out so you get great sleep, then you don't have the same issues in the daytime. Right now, if I miss a nap I have a worse time controlling the attacks, because I'm more susceptible to emotional triggers. Part of the reason I need naps during the day is because I don't sleep well during the night. So if we do try this hopefully it will be the right treatment.

And then Mom, Dad, Tori and I went to Seattle so Dad could finish something at work. Mom and Tori and I got coffee then wandered. Then we went to the marketplace across the street and wandered. Then came home.

And we also found out last week that insurance will cover a rigid frame chair up to 90% up to $1,000 dollars. So if the chair is $1,300, they'll cover $900 of it and we have to cover the rest. Which still isn't bad, because that brings the price of a rigid frame chair from $1,300 to $400 so.

Yeah. Lots of good lately to compensate for the bad.

Bye for now,

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