Documenting My Diagnosis: Day 3

Wednesday, October 5, 2011


I slept in again. I don't normally sleep in at home, so this was the last time. Usually I only get 5 1/2, or maybe 6 hours of sleep (depending on if I fall asleep on the couch or not), so- tomorrow I'm setting an alarm. I can't be well rested on top of being a lazy ass sitting in this uncomfortable bed all day. Thats not my norm.



I slept better last night, but I was cold. I woke up at 2am to a guy freezing metal stuff to my head- not so pleasant. And then at 5am, I had to pee worse than I've ever had to pee in my life, and I was stuck to the bed! The tape from my wires had gotten wrapped in my hair and stuck to the sheet. And then I got wrapped up in the tails of my electrodes. And then, I was tripping over the cord to my leg wraps, which was tangled up with my tails, and- oh my God someone just get me to the toilet before I pee all over myself!!



9:00: One of the doctors and a student doctor just came in and talked to me a little bit about yesterdays episode. Alexis and I explained it to him, and he made little comments like "I don't quite know what that is, but-", and "well we'll have to take a look at that". So he hadn't reviewed any of my stuff yet, and just wanted to hear a little bit more about it before he sat down to see it. But again, I felt discouraged. I didn't want to hear him say "I don't quite know what that is", I wanted to hear him say "Oh thats this, and this is the cure, and heres your neatly pressed going home outfit, ta ta!". ...so now I wait patiently for the next few hours, hoping that when they review the video they see something familiar, and have an idea.

By the way, all of my blood work came back normal. Vegan diet, for the win!

Time for water and oranges. The highlight of my morning, I'm sure.



10:23: Okay I skipped out on the oranges this morning. I'll save those for lunch. I ate store bought bananas instead. Did I mention that they brought me a plate of gluten for breakfast? Whhhhy?

Its boring here. I keep getting up and trying to clean. But doing that means I have to untangle wires every 5 seconds. I carry around my electrodes in a little purse. My EKG readings keep messing up, so earlier they brought me a new bag. I actually like this bag a lot better.

...and see, I'm so bored, that this is way exciting for me. A new bag to carry my wires around in, yay!



11:14: I just took my first dose of medicine. ...2 pills in a little cup, that are maybe going to change my life.

See, I'm trying to be optimistic. Through my red puffy eyes, I'm trying to see things for what they are.

My team came into my room, and we got down to business. Nothing was picked up during my face numbness or blurred vision. No readings of any sort. Nothing visual, nothing on paper- which is kind of what I expected. And then we started talking about my evening episode...

Again, nothing was recorded on EEG, but this episode, the doctors agreed could have been a seizure. They had a more specific name for the type of seizure, but in the moment I didn't quite catch it. They didn't dumb it down enough for me.

And then they told me about the medicine they want to put me on. And I silently freaked out.

Why did I come here? To get a diagnosis? To seek treatment? ...so why is it that as soon as the doctors tell me what they think is really going on, and offer me a possible solution, I break down?

As soon as they left the room I turned into a sobbing mess.

But before they had left, I agreed to try the medicine. Because really, thats why I'm here. I'm here to take a step towards getting my life back. If this medicine works, than these attacks are seizures, which may or may not be epileptic. If it doesn't work, then its something else, and we try something else.

The doctor said its not migraines.

So I just took my first dose. And I'll take another dose tonight. If my symptoms go away, then we'll continue it. He said that its my choice whether or not to continue it after I leave. And this is what really got to me. This is the part that I struggled with. ...if these are seizures, and I have to take this medicine for the rest of my life- how will it effect my kids?

He said it might make me tired.

I have 3 kids. I have a lot to do in a day. How can I take care of the kids if all I want to do is sleep?

But then again- how can I take care of my kids if I'm having daily seizures?

So my brain is swirling with emotional distress. I called Christopher, who had pulled over at the visitor center on his way home from an adventurous search for organic gluten free soy formula, since hes just about out of my pre pumped breast milk, and we talked it out together. This is whats best for us- to try the medicine. To at least see if these are, or are not, seizures.

And then we'll go from there.

So today, for the rest of the day, I'll continue to do crazy things like get up and have a stand in place dance party to get my heart rate up. Alexis and I will laugh so loud that the nurses will have to come in and tell us to shut up because they can hear us down the hall (but nothing can be louder than the crazy guy last night that we feared was going to get loose and attack us with a plastic butter knife). And I'll accept things the way that they happen.

This medicine might not work. And if it doesn't, then we'll go from there.

Also, they just brought me a veggie patty on a great big wheat filled bun. I'm so glad they're getting the hang of this no gluten thing. Please, poison me.



And then they poked my finger and took my blood. Mean.


1:04: Its probably time to pump milk. ...I'm having a hard time functioning on the meds. They make me dizzy, and tired. Every time I move I lose my balance. This is the part that I was dreading. I almost feel worse? Be open minded, be open minded, be open minded.


Christopher is doing great at home. Still sending me pictures of the babies-

3:36: I just worked out for 50 minutes. My feet and calves are killing me. Jogging in place for that long sucks. I feel a little bit out of it now, but nothing too drastic. Maybe I'll get up and do it again in an hour, after I eat lunch #2. We watched the 40 year old virgin while I got my cardio on- we've been watching movie after movie after movie. I fell asleep last night during Weekend At Berney's. I've never seen it- which seems kind of un-American, now that I think about it. And because I fell asleep, I've still never seen it.

The room smells like pineapple. I can't get enough of it.

5:35: ...I was feeling great. Like, really great. I had high energy. No numbness, no nothing. After I worked out I was on top of the world- all smiles. ...and then I started to hear my breathing loudly through my left ear. ...and then the left half of my face went numb. ...and then my IV site in my left hand went numb. I avoided hitting my seizure button for as long as I could, thinking "I'll wait until something else happens", and then every time something else would happen, I'd just ignore it. And then I had a moment of weakness in my head, and gave in and pressed the dang button. They asked if I needed a nurse, I said "no, I just don't feel right", they said they're watching me closely, and thats that. All of my high energy is gone, I feel out of it, so I moved from my standing corner back to my boring bed, and now I'm messing up my words. I meant to say "seizure" and I said "ceasar". I messed up another word earlier- I don't remember what it was.

Isn't this about the same time of day yesterday that I crapped out? Well at least I've still got my speech today.

My bestie Kalii said shes going to play a song for me on her radio show (www.kpsu.com), so I'm tuned in and waiting. I can't wait to hear it. She hasn't even played it yet, and I'm crazy excited. What will it be, what will it be? When I listened to her radio show last week, it was just like talking with her on the phone. Her words flow naturally between songs.

Oh my God Kalii- I love you.

Here I am, feeling how you know I'm feeling, and then out of nowhere you play a song that shakes my heart to a stronger beat. Nothing could have been more perfect.


7:28: So more about that episode. I kept trying to pull myself out of it, by telling myself "you're playing it up, you know they're watching, you're doing this on purpose", but every time I'd tell myself that, I'd drift off and find myself staring at the wall again. Or I'd catch my head bobbing to the left side. And after an hour or fighting it, I started to think clearly enough to scoot my salad tray towards me, and within minutes of eating, I was better.

Seriously- it was that simple. I ate food, and I was better.

And we're not talking "oh I feel better, tra la la", but like- night and freakin' day. I was a completely different person.

I don't know that that was the case yesterday, but- my yesterday and my today were the exact same. I had my attacks right around the same time of day, they both lasted about 45 minutes, and my symptoms were all the same. Could I have some kind of a blood sugar thing? Could that be causing all of this? I've been tested for diabetes 100,000 times, so I know its not that, but- maybe something else?

Way to not work, seizure meds, by the way.



Hey, they didn't mess up my dinner!!


8:05: My babies just called me to say goodnight. It was precious.



8:23: All I want to do is skype with my husband, eat some organic gala apples, and watch the rest of Titanic until I fall asleep. Maybe tomorrow will be awesome??

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