Documenting My Diagnosis: Day 1

I woke up at 3am this morning. Feeding the baby was all sorts of depressing, knowing how hard it would be for her later in the day when she had to take Daddy's bottle instead of Mama's- I snuggled her tight and brushed her face with my fingers- she pushed me away and sleep suckled.

By 3:45 I was showered and on my way down the stairs. I had wondered if maybe I should use actual hair products, and maybe try to straighten my hair- would that help things at the hospital? In the end I decided not to, they should be able to sort through my dreading locks just fine, in order to find the sweet spots on my scalp.



Christopher had made a couple quarts of orange juice for Alexis and I, and scrambled to collect scrabble and suitcases with me. We had a few last minute hugs, he ran my phone down the driveway to me as we were pulling off without it, and in the dark of the early morning hours- we were off.



An hour or so later we stopped to fix the GPS. We ended up going inside, and I'm so dissapointed I left my camera in the car, because boy did that place have some treats for us. Not only was the bathroom totally trashed, with dirty femenine napkins decorating the floors, but there was a huge display of Sasquatch big sticks (and it was only 2 aisles down from the gas station Disney decor)! ...I'll let you use your imagination.



After hours and hours of driving, and talking about ghosts, horror movies, and budgets- we started merging into heavier traffic and seeing the city lights below the sunrise.

And then long story short, we were there.



It was no nonsense from the moment we hit the 8th floor. I didn't even have a chance to take a picture of the front desk- they swept me off to my room without even so much as asking to see an ID. They had blood pressure cuffs and a hospital gown on me before I could even go pee. This place means business.

And while Alexis and I were still in silly road trip girl time mode- the doctors and nurses were not.

They talked to me about my symptoms, and mine and my family's health history. They asked me about various kinds of anxiety, asked if anyone in my family had ever MS or epilepsy, and did a quick physical examination. ...lather rinse repeat.

At one point I had 4 doctors in my room at once. And I was intimidated.

I have to be honest though- I feel a little discouraged. I hate the way that the doctors talk down to me. Its not so bad here, there were just a few moments today where they made me feel like my condition wasn't very serious (and I'm trying to keep in mind that they see some pretty dramatic seizure activity day in and day out, and to them, maybe I'm no big deal), and I kind of wanted to just turn around and leave. Example: when they'd ask me a question about how I handle bright lights, and I told them about how things flash at me, and they cut me off to say something else, without even writing down a note about my inability to focus in a room with stripes. But oh well, they know what they're doing, right?

The next part sucked...



I almost didn't want to post these, because I know how awful I look. But its kind of crutial to the documentary, sooo- that.

Remember when I thought that I should have maybe done my hair, so that they could actually brush through it? ...yeah should have done that. She tore through my rats nest with a comb, twisted my hair up into some awesome 90s style Gwen Stefani buns, and then scrubbed and glued and blow torched discs of metal and wire to my scalp, over and over and over again.

The glue had ether in it, and the smell was making me die- so Alexis shoved a scentsy bar under my nose. I inhaled deeply in between breath holds, all while clenching my eyelids closed tightly, and doing my best to ignore the constant tugging and rude comments about my hair falling out and lack of hair brushing skills.



They drew blood, and then gave me an IV (he nailed it the first stick). They brought me soggy spinach and overcooked frozen carrots, after 100 questions about the mythical vegan diet, and then I got another visit from one of the doctors.



And then it was flu vaccine time. ...sure, why not.

Next up: try to trigger seizures.


Strobe lights with my eyes closed, strobe lights with my eyes open. Flashing flashing flashing. And then hperventalating, and lots of it. Somewhere around the 2 minute mark I crapped out. I couldn't breathe anymore, and felt like I was passing out. The tech over the intercom encouraged me to keep breathing, and I kept trying, but couldn't quite get it back. During the 15 minutes of rest and observation afterwards I felt awful. Eyes twitching, body heavy, wide awake dreaming- all sorts of awesomeness.

I can't tell if it was some kind of reaction from the over abundance of oxygen, some kind of anxiety attack, or an actual seizure event. I won't know until the doctors review my readings tomorrow.

Either way: it sucked.



But then there were grapes and vibrating leg things, so- its not all bad here.

I'm starving, by the way. And embarrassed to report that we spent $14 on steamed vegetables from the cafateria, since the kitchen doesn't seem to understand gluten free vegan, according to the graham crackers, white bread, and reheated freeze dried potato flakes brought to me on a tray this evening.

The view from my window...



Maybe tomorrow will be awesome. For both me, and Christopher and the kids back at home (who are doing exceptionally well).

I love you and I miss you honey.

I've got milk to pump, and a girl movie to watch...