I am a part of a couple of different epilepsy support groups online.  Most of the time we talk about random things, and we share what we have learned with others, ask questions, and we also get to vent to others who know exactly what we are going through.  Last night during a chat with a few people I came to the conclusion that one of the strangest things we do is a lot of waiting.

Most of the time we spend our time waiting and hoping we do not have a seizure.  We wait knowing it is always possible but we wait in the hope it will not happen.  Then many of us a been in this same position I am.  Having video EEG monitoring.  24 hour a day in patient EEG monitoring with video for days and days.  Most people find it takes about 5-7 days to get the information the test is designed to get.   However, we spend our time waiting to have a seizure, hoping it will happen.  How odd is that?  We are a group of people who spend all our time hoping not to have a seizure, then we go in for a video EEG and we spending our time waiting and waiting actually hoping to have one!

So here I sit waiting and waiting to have seizures.  Yes that is very odd, as I do not desire to have them, but for the purposes of this test I must.  So I am in the hospital, was poked 6 times to get an IV, I have had my meds cut 3 times now, and I am waiting.  In the end I will go back to hoping that I do not have seizures, as that is what I would rather be doing now.

2 Comments

1. 

   I’m SO sorry I’ve been out of the loop for all of this! Know that I love you and am praying for you. So, so sorry they had to stick you 6 times for the IV. I know how that is…and it is NOT fun. If you get bored, you can always text me.

   Comment by Lisa — May 27, 2010 @ 1:23 pm

2. 

   I am so glad there is such a vast number of people to keep you on track this week. I cannot imagine the wait, all the while hooked up to wires. And being a pin cushion! On the other hand, the waiting I did waiting for my mom to die was hard. Trying to be respectful of her being in the Great Room & able to hear us as we talked amongst ourselves.

   Praise God for your computer & access to the world! I hope they get an accurate map of your seizure pattern. I know it’s only one more step of many, but you have prayer warriors outside those walls. Love you!

   Comment by shellie (baylormum) — May 27, 2010 @ 2:45 pm

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