Documenting My Diagnosis: An Introduction

Sunday, October 2, 2011

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.

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