Sunday, November 18, 2012

I, Leah or Am I a Broken Cylon?

I'm curled up in a corner of the couch typing this and my dog won't let me out of my spot.  He has laid down on my feet and sprawled across the only direct way out.  He's usually pretty content to lay next to me but he doesn't make it so I can't move unless he knows I'm feeling a bit off and short circuited which I am.    

November is more than NaBloPoMo or NaNoWriMo or even Thanksgiving; although, I am thankful.  Apparently, this month is also Epilepsy Awareness month.  I didn't know such a thing existed;  my very good friend told me about it because she's awesome and loves me.


1 in 3 people know someone with epilepsy. 
You can educate yourself about epilepsy from these links.  

I, Leah.  

I have left-side TLE epilepsy with complex partial and myoclonic seizures I've pinpointed to beginning when I was 16.  TLE means is that I have seizures that originate in the left side of my temporal lobe also affecting the hippocampus.  For me, the seizures affect my short term memory, spatial navigation, ability to speak, sometimes my ability to process auditory information from my right ear, and the sight in my right eye.  The myoclonic seizures are just quick jerks that feel like muscle spasms, usually thought of as clumsiness.  Just about everyone has experienced myoclonic jerks in the form of hiccups or the jerk you get when you fall asleep. Both seizures are small and can last from a few seconds to 2 minutes.  Mine only last for about 20 to 30 seconds.  I never lose consciousness while I'm having a seizure.   Apparently, I cry, can't respond during it and I don't always remember that I've had one.  I can be confused afterward, I'm always extremely tired and have trouble getting my words out or finding the right words.  If it happens in the evening, I just go to bed.  When I have trouble speaking, I just mime stuff to my hubby or he finishes the sentence for me.  Even my friends have finished sentences for me.

 The seizures rarely happen now that I'm on medication to control the epilepsy.  The original dose controlled about 75% the seizures.  One of many upsides is now I recognize how it feels before I have a seizure (aura); and, I know my triggers now.  In particular, big allergic reactions, alcohol, too little sleep, and too much caffeine, especially those last three combined, and rapidly flashing lights.  It's actually really great that three of those are easy to avoid.  Although, quitting all alcohol and most caffeine almost made me cry.  I grieved them for a couple of weeks.  But, I've been through much worse things than this while dealing with unknown uncontrolled epilepsy, and honestly, I've quit worse things than caffeine and alcohol. An idea that has really put this entire last year into perspective.

I feel like I'd come out of a 20 year fog I didn't realize I was in. I could never remember things I'd said and schedules I'd made.  I have lost friends because of how I am post seizure without realizing that's what it was.  I always assumed I was a crappy friend and didn't know how to fix that.  I always thought my trouble speaking was what happened after I had a migraine.  The littlest things turned out to be the biggest thing for me.  I quit having random vertigo and light isn't randomly dimming (for instance, the sun on a cloudless day). Things you don't want to tell anyone about because they might think you're crazy.  I am not nearly as clumsy-- I don't run into everything when I am tired at all, no doors, door frames, corners and furniture.  I quit hitting my head on EVERYTHING-- no more braining myself on the cabinets, the refrigerator door, the kids' play structure, the car getting in and out. I am not dropping anything anymore; there are a lot less messes and broken things to clean up.  I might even be able to keep my iPhone and laptop in decent shape (maybe).  And HOLY CRAP, I can remember things!  It's such an extreme difference even my friends have noticed-- it's really that big a deal.  My migraines subsided by about 85%, also very exciting. And interestingly, my dog seems to know that I'm going to have a seizure before I do.  He already bothers me all the time, but about 5 to 6 hours before I have a seizure or feel like I might have one, he won't get the hell out of my face, literally.  I used to be extremely annoyed, but now I'm extremely thankful.

However, because the medication was only controlling about 75% of the seizures, my doctor doubled the dosage about 3 weeks ago.  It's a slow increase taken over the course of 6 weeks until I am on the intended dosage.   It makes me extremely tired (which will go away) which I'm all too familiar with anyway.  Then two weeks ago a virus hit everyone in the house, taking us down one by one during which I had a couple of seizures making things just that much harder.  The better part of last week was spent catching up on everything that had been put on hold.

The Fresh Beat Band as broken robots.
Last night, I took my oldest daughter to a Fresh Beat Band concert.  It was early in the evening and blissfully short with a break in the middle.  However, it was dark and about 1/3 of the crowd had these rapidly flashing lights that were being sold at a stand with all the usual concert merch.  I had to remain focused on the stage and tell my daughter to keep it on the just the glow setting that changed color and not the flashing setting.  I was able to avoid a seizure as long as I didn't look into the crowd and didn't have it near my face.

The end result is my 4 year old and I had to talk about how mommy has epilepsy and seizures.  Then we talked about what that means.  We'll work on what to do in all kinds of emergencies including the event if mommy has an allergic reaction or seizure that is a big one or one that goes on too long.  I have been pressed by family and friends to get a medic alert bracelet because of the epilepsy, the rice allergy and penicillin allergies.  I already have ICE numbers in my wallet and on my phone.  I really don't know why I was resisting so hard about getting a medic alert bracelet.  I always thought of the bracelets as these big ugly clunky things or like those buttons that geriatrics in assisted living wear.  You know the commercial, "Help, I've fallen and I can't get up!"  But those are honestly really stupid reasons not to get one.  I looked them up, there are some very fashionable bracelets, wallet cards and necklaces these days.  People even get medic alert tattoos now.  I did a survey of EMTs and what kind of medic alert items they look for (they do actually look).  Unsurprisingly, it's the obvious ones, the big clunky bracelets.  They don't have time to look in your wallet; and, the more the item looks like regular jewelry, the less they think to look at it.   In light of the survey, I settled for one of the unfashionable sort of clunky kind.

I am incredibly thankful for my family, friends, church family and the incredible doctors that helped figure all of this out.  All of whom provided support and continue to do so in nothing but positive ways.  

If you read all the way to the end of this post, good for you! That's kind of persistence I like to see.  I hope my story hasn't been too horribly boring and even if it was, I don't want to know about it.

Peace Out.

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