Monday, April 30, 2012

Serious stuff

So you may or may not know from reading one of my first posts is that Matt and I found out about over a year ago that I have epilepsy. I have had symptoms before a year ago but we never knew what it was or why it was happening to me. We just thought I was always sensitive to heat and over exerting myself which caused me to feel disoriented and dizzy. We just dealt with it day by day. Slowly certain symptoms started to get worse... I had certain sensations as though I was walking crooked when I knew I wasn't, I would get dizzy and have to sit down a lot. It started to get so bad that I felt that I was in a fish tank all the time. The walls were bowed out and hallways seemed longer than they were. I couldn't really judge distance any longer.. depth of field didn't exist to me. One night when Matt and I were sitting in our living room watching TV I was startled by the fact that I thought I just saw the TV and all the books on our stand fall off of the shelf onto the ground. Logically that didn't happen because Matt was undisturbed by it. I quickly sat up and asked Matt if he saw what just happened and if my eyes were "rolling" in my head. He said no and we knew right then that there was something wrong with me. I thought I was crazy because it didn't happen again for a couple of days, I started to doubt myself... then out of no where it would happen again. It's kind of strange that I was glad that it happened again because at least I knew I wasn't crazy. After a few months of this happening, me calling off work and finally having the worst "incident" yet at work... I drove myself to the doctors that day to complain yet again that I was disoriented. I don't know how I drove myself and made it there safely but I did. I called Matt and he rushed to be with me during the appointment and later took me to the ER to get a CAT scan. Of course nothing showed up and we were back to square one. After seeing and ENT and my general practitioner we decided to go to a neurologist and told him about my symptoms. He immediately diagnosed me with Todd's syndrome also known as "Alice in Wonderland Syndrome", which completely describes what I have been experiencing on a daily basis. I was prescribed anti seizure medication and was ordered an EEG. After 3 EEG's and changes in several medications as well as playing with different dosages our neurologist decided it was time for me to be monitored. This means that you are in a hospital bed, taken off all your medication to see if and when you have seizures. When they catch a seizure it tells them where in your brain it's originating from so they can understand more about the type and how they can treat it. It was a grueling 5 days. Matt came to visit me 3 times a day. He brought me jelly beans and magazines to keep me entertained. My sweet friends came twice to see meas well. Unfortunately I didn't have any seizures so the test were inconclusive. I wanted to document the experience ... so I took photos, I didn't have my camera so I used my i phone. After talking to my friend Mandy about whether or not I should blog about it she helped me come to the conclusion that it may help other people understand what I'm going through and help others that are going through it themselves. So here they are... my 5 days and 4 nights at Brakenridge Hospital.



My lovely IV that took 4 different people and 10 tries to get in. I wasn't too thrilled about it.


You know how people say hospital food is bad? Well it's true.


All the electrodes attached to my noggin.





This Popsicle made me really happy.


Yup.... that's my feet. They had two cameras on me day and night.


coffee and grits.... mmmmmmm


Tried to crochet but the IV made it hard.


Hello magazines that I read over and over.


The view by day.


I managed to make one little guy.


And here come the bruises....


The view by night.


My birdies.


Trash.


Christina was pretty cool.



Jelly beans!


This was some sort of lemon tart thingy that they brought me.Thanks guys but no thanks. 


Hooked up to the wall. I literally couldn't move at all. Only to use the restroom and a nurse had to come and help me. Ugh.


The last day when I actually got to stand up on my own.


In the mirror after they took out the electrodes. It felt so good to have them off.


Not one seizure... until I walked out into the parking garage with Matt, no kidding.

So that was my experience... I'm still and always will be living with epilepsy. If you have any questions or know someone that has epilepsy please feel free to shoot me and e-mail. There are support groups that you can also join. It's going to be a long journey but learning how to handle and live with epilepsy is the most important thing you can do.

XOXO