Documenting My Diagnosis: Day 2

Tuesday, October 4, 2011

I slept awful last night. I couldn't stretch my legs out all the way, and I had to sleep on my back, when I'm clearly a tummy sleeper. And of course, my husband wasn't with me, so that in itself was enough to keep my eyes from fluttering all the way closed.



I woke up around 7:30, so I guess I got to sleep in, which was nice, but unwanted. Christopher texted me just 2 minutes after I got up, so that was a good pick me up. I went pee, pumped breast milk, and then sat. They brought a tray of breakfast to me (even after talking with the dietician, they still can't seem to understand gluten free vegan- I won't be eating my cold biscuit this morning, thankyouverymuch), and now as I type this, a technician is doing maintenance to my electrodes. The glue is cold.

Did I mention that we brought a scentsy burner? Our room smells like apple strudel. I bet its driving everyone down the hall crazy. Yet nobody has mentioned it.



If I'm going to have an attack, its not going to happen like this. This isn't my normal- sitting doing nothing in a dark room all day. I need to get up and get moving (which is hard, because they won't let me so much as go pee by myself). We opened up the blinds as much as we could, and today I'm going to walk around my room. As soon as Alexis gets back from grabbing breakfast from the car (apples/bananas/oranges), I'm going to feast, and then get on my feet. And I'm going to stand up, all, day, long.



I heard a rumor that if my strobe/hyperventilation testing didn't show anything, that they keep you awake for 24 hours. We'll see about that. I think I should be talking to a doctor soon?

Its 8:20am. I'm cold and I miss the warmth of my babies. I'm hopeless yet determined. I'm ready for a breakthrough. I'm ready for something to happen.

...The doctor came in around 9:00 with no news. He asked about how I've been feeling, I told him bored, and then we talked about how I can trigger some of my symptoms- jumping jacks. Alexis and I are going to get our cardio on.

Also, I finally pooped. This is a big deal, people.

...Its 10:30- I just got done doing in-place cardio for half an hour while listening to forgotten 90s music. I'm drenched in sweat that I can't wipe from my electrodes, my face and neck are numb, and my chest hurts. FIND SOMETHING.

Did I mention that one of the nurses totally got a show last night when he walked in on my pumping milk? Nobody pays attention to closed curtains anymore. Oh well, not like hes never seen a pair of worn out saggy milkers before. ...can you tell I'm losing my elegance?



10:34: I just saw something that wasn't there. And there it was again. ...nurses and doctors just came in. They're noting my readings. What can I do to make my attack worse? How do I bring on the paralysis? We played scrabble, but our game sucked, so we bagged. Christopher is doing a rock star job of taking care of the kids at home. Hes been steaming fruits and veggies for Evelyn, as well as bottle feeding her my previously pumped breast milk (which I'm positive we're going to run out of if things keep going the way they're going here). He took all 3 to soccer practice last night, made dinner for everyone, gave them all baths. Today he walked them all to school, and then took the younger 2 to run errands. I asked him if he was trying to impress me, because seriously- men that do chores are sexy.



12:00: 4 doctors just came into my room, my "team" of doctors, I guess I could call them. And they told me that they haven't seen anything on my EEG. Nothing. Everything looks normal. ...my heart sank a little. Really, you didn't see anything yesterday after the hyperventilation test? To be fair, I haven't had a huge attack yet, no slurred speech, no forgetting what things are or how to talk, but- nothing? They asked me if I had any questions, and said they'll see me tomorrow. TOMORROW?! Isn't there something more you can do TODAY?! ...no? They're waiting for me to have a big attack. They're waiting to see something, rather than just hear me complain about it.

I feel hopeless. I know I shouldn't, and "hope is all we've got", and blah blah blah, but- I miss my husband, I miss my babies, and I'm sick and tired of having nurses that don't speak proper english come in and bring me food that I can't eat!

Seriously, where in the words gluten free vegan, can somebody get a chicken thigh and a bread roll. Why is this so hard to understand?!

I just feel exhausted. Mentally. I had it embedded in my brain, that I'd only be here for 3 days. I'd be going home on Wednesday or Thursday, I thought. And then I hear the doctors say "ok we'll see you tomorrow", and walk away, and- ugh. Just, a letdown.



Alexis has been awesome, though. She prepared me a giant vomit bucket (minus the vomit) of black grapes. And everytime someone comes into the room, they comment on the assortment of fruit that we've got. It baffles me how in a health facility, proper nutrition is so foreign.

On the plus side- I've got a decent day nurse today. She sent another note to the dietitian, and she speaks english.

I'm running out of things to take pictures of.

Is anybody even reading this? Mom? Nurse around the corner? God?

1:45: ...Alexis is a good friend. A true, honest to goodness, friend. We just had a good cry together.



2:20: I hate 1-ply toilet paper. Why does it even exist.



2:40: Our room is right by the landing pad. When the helicopter flies in, it looks like its going to crash into our room.

3:11: (whoa-ooooh). I just had my EKG strips ripped off of my chest, put onto my back, and reapplied to my chest. Also, the tech pulled out a good handful of hair, thats already falling out like crazy, while doing so. ...why is my hair falling out so badly, by the way?

My smooshed face sleepy babe. Oh how I miss her.

3:25: I'm about to open up my PSE, and then close them all as quickly as I can, in hopes that the flashing will trigger an attack. Because it did once? And I'm getting tired of sitting around waiting for my brain to fry from sitting around.

Elie got a purple dot at school :)

3:38: Alexis is asleep, and I'm mad that my pse experiment was a fail. What can I do now? My back is going numb, my face is numb, I'm tired tired tired, but- none of that shows up on the EEG, and none of that is visible to them on camera. Brain storm people, what can I do to bring on a little bit of slurred speech? I'd even settle for some head bobbing. Seriously, whats it gonna take to get my brain to skip a beat?

4:00: I miss home so much, I'm spying on their netflix history. Today Charlie watched a Thomas movie called "Mud, Glorious Mud". ..and Christopher watched A LOT of The Office, haha.

Some cell phone pictures that Christopher has sent me throughout the day...




9:19: I crapped out big time. It lasted 45 minutes to an hour. I kept losing my thoughts, and my memory. I could hold a real time conversation, for the most part, but I kept forgetting what I had just said, and sometimes it caught up to me so quickly, that I couldn't figure out the next word that I wanted to say. I looked around the room, and silently tried to name objects. I'd usually get 2 or 3 objects in, and find myself staring blankly at the wall. I'd try to pull out of it, by asking Alexis to talk with me, but I always ended up trailing off and staring at the same spot on the wall that I couldn't quite pull my eyes away from. There was only a brief moment of slurred speech, and a couple of lung jolts that sounded like I was laughing, but it was mostly just confusion. I remember trying so hard to remember mine and Christopher's wedding. "Wedding, wedding, wedding, wedding", I repeated to myself. But all I could picture was a photograph of our wedding. I couldn't find the actual memory. I never got past the still shot.

We won't have the EEG readings until tomorrow. And even then, I have low expectations. I don't think they're seizures, so I'm expecting that nothing showed up. But- I did have nurses witness it, and its all on camera, so they'll at least see what they're dealing with, and hopefully they've seen it before.



After it all wore off and my brain settled back down to normal, we sat down for an epic game of UNO and ooh'd and aaah'd at the Dallas sunset.

Maybe tomorrow we'll have a few more answers? Or maybe we won't.

But either way...



Girls just wanna have fun.

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