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...

Documenting My Diagnosis: An Introduction

I'll never forget the moment that it dawned on me that something was wrong. I had been sitting at the computer desk, half of my toes on my left foot numb, catching my head every couple of seconds when it would randomly yet rhythmically bob backwards. I stood up and walked into the kitchen, poured myself a glass of water, took a deep breath and asked across the room to my husband "do parts of your body ever go numb for no reason?".

The conversation drifted from numbness, to sharp pains, to heat and cold intolerance, to stomach cramps, to blind spots, to slurred speech, to yadda yadda yadda...

Its time to get help.

I called the base clinic and made an appointment. I saw a doctor who sent me to a doctor who couldn't help me, who sent me back to the doctor that sent me to him, who sent me to another doctor, who promised to help me and then didn't, and then sent me back to the base doctor. I took multiple trips to the ER for paralysis, for passing out, for forgetting who I was. Nobody could help me. They all sent me home.

Finally I got fed up with the medical bosses giving me the run around, and I had a complete breakdown. I cried, and I got mad, and I went absolutely crazy- kicking and scraming may or may not have been present. While most of my friends and family had been supportive of my "condition", for lack of a better word- others were angry with me for not accepting the pills that the doctors had offered me (for migraine headaches and anxiety- without having given me a real diagnosis or any information on what they thought it was that I had), and then everything got so overwhelming, that I went to my husband and I begged him to help me. I needed his help. I needed him to take control, and I needed him to argue with the ladies on the phones in the offices that I would eventually be sent to and pushed aside and ignored.

And so he did.

He called the clinic, to where I had been seen several times already, with the idea of "if they won't help her, I'll take it to the shirt" (the shirt is an air force guy that gets shit done when it needs to be done), and the next thing I know we've got a double slot appointment booked for later in the week, one thing led to another, and now I'm being sent to an epilepsy center 3.5 hours away.

The reality of my going hadn't sunk in until tonight, while I was packing. I was folding up my stack of pajama pants- I won't be taking any shirts, since I have to wear a hospital gown- and the kids were bouncing about around me, being loud and having fun and trying to mess up my freshly made bed, and... this is real.

I've had Xrays, blood draws, MRIs, CTAs, EEGs, EKGs, and a freakin' spinal tap. All with "normal" results. And you guys, I know I'm not crazy.

Random parts of my body go numb. A few toes at a time, the left half of my face, or when I was walking home from my daughters school the other morning, the outer parts of both legs, from the knees to the ankles. I have no feeling in most of my back, just an itchy numbness and sometimes burning like tingle.

Things flash at me. Mini blinds during the daytime when the light is coming through them, the kids patterned play mat on the floor at nighttime, and black font on white paper. But never when I look directly at them, only out of the corners of my eyes.

Things jump at me, out of the corner of my eyes. A spot on the wall thats been there for an hour, will suddenly jump into my vision and knock me on my ass, because I think a giant spider is crawling beside me, when really its just a speckle of wall texture, the same speckle thats been there beside me for the last hour, but my eyes are just now picking up on.

I see a single star flash, in the same part of my left eye. Sometimes its a black spot, or a blurry spot, but its always in the same area, in the same eye.

I lose my speech. In two different ways. Sometimes my brain goes blank, I forget where my sentance was going, and I just can't talk, because I can't remember what I was going to say. Or sometimes my speech literally leaves me, and when I try to talk, it comes out a slurred stroke like mess.

I forget what things are. My brain puts up a wall, and while I'm seeing things and looking at them, I just have no idea what they are. I don't know my name, I don't know what a flower is, I can't tell you what a car is, I just see... things.

I get things backwards. Sometimes its just a brief moment of dislexia, or sometimes its more serious, like a half an hour of wrong way directions while driving, landing me on the opposite side of town, without a clue as to where I am, screaming because I think my mother in law has just driven us onto a one way street going the wrong way, trying to open doors from the wrong side, or even twisting up my words outloud.

Sometimes I say something other than what I read. I'll read "the cat walked left", but say outloud "the car went away".

Sometimes my eyes twitch. They'll either jerk really quickly to the left and back, usually when I'm trying to concentrate on something, or they'll flutter back into my head as if a string is pulling them to sleep.

I've lost consciousness. This has happened both while driving, and while sitting on the couch. Its always brief, and can be mild, where I know whats going on while its happening, to severe, a total blackout.

My face flushes. Only on one side, the left side (everything is on the left side). My cheek and my ear will turn red, and burn. My skin will get so hot, that my temperature at the doctor read 106.

Sometimes my lips tingle or buzz. Almost like someone is holding a poking them with electricity.

I was going to sleep one night, my husband said something to me, I think it was the word "sorry", and then in a voice other than his, the word was repeated back to me, loudly in my left ear. My brain repeated it me. ...I was afraid to go to sleep upstairs for 2 months.

I hear my breathing and my heartbeat through my left ear. This comes and goes, but never goes for long.

Sometimes regular sounds are replaced with loud screechings and banging sounds. The toilet flushing sounds like an explosion. The kids talking sounds like claws on a chalkboard.

I have brief loss of muscle control in either my neck, back, or left leg. Any one of those body parts will lose strength and drop at any time. And it always happens in a sequence. Sometimes only twice in a row, sometimes 10 times in a row. My leg will drop while I'm walking, and I have to catch myself from falling. This happens when I'm standing doing the dishes, walking with my kids down the street, or coming down the stairs (which has been dangerous). When my neck gives out, my eyes go with it. My head drops and falls backwards, or forwards. Sometimes its slight, and sometimes its so bad that my chin has hit my chest. The one time my back gave out, I was sitting on my knees, looking at my computer on the kitchen counter, and my body collapsed. It was so drastic that I thought I was going to hit the floor, and was afraid to move for the next few minutes. It happened again, immediately after, but not as bad.

Cold/heat intolerance. If I get cold, nothing can warm me up. Eating or drinking something cold results in my wearing winter gear for the next 2 hours. I've been known to be under 5 blankets in 80 degree heat, because I thought it would be fun to drink some lemonade with ice in it. If I go outside in the heat, I turn into a vegetable and don't return to normal until I've cooled down completely.

One time when I was trying to sleep, it felt as if somebody took my head and slammed it down onto concrete. The absolute worst pain I've ever felt. I saw a bright flash of light, and my entire body jerked.

...and this is my life. This is my life every day.

Some days are better than others, and those days are more often than not, now that I've quit exercising and driving, but- I just really need answers, and maybe even treatment, ya know?

So now I'm packing all the lounge pants that I've got in my closet, stuffing them into a suitcase with my laptop, breastpump, and scrabble, leaving my children and husband behind, and driving with one of my closest friends from Dyess to Dallas, to be hooked up to 31 electrodes and have my every move watched, for 3-14 days.

We've talked to a very helpful woman (several times, thanks to glitches in all systems everywhere), and shes given me the go ahead to bring my camera. I plan to document as much of it as I can. Not only for me, but for my husband back home who will be worrying himself sick, and for my Mom and Grauntie on the west coast, who maybe aren't on the best terms with me, but I know still care, and for my Grammy, and for my best friend, and for anyone else that might have fallen interested over the last year and a half since I first started reporting symptoms.

But mostly I'm doing it because I need to.

Lets be honest, y'all. I'm terrified.

I've never been away from my babies for more than 3 hours, and here I am going off to live in a hospital for days, maybe even weeks, with a whole world of unknown ahead of me.

Keep your fingers crossed, say a prayer for strength (if not for me, then for my husband), or send all of the positive vibes your magic crystals can conjur. We're going to need it.



But I'm really going to miss that while I'm away.

I'll post again tomorrow, with lots of pictures of medusa wires and eeg readings :)

For more information on the epilepsy monitoring unit at Parkland hospital, please click here.