Dear Parents and Loved Ones-

Dear Parents and Loved Ones-

If you know me or even have read this blog then you know I have epilepsy. Recently something has been bothering me a lot. It's something that I've always dealt with but never really acknowledged until I was bothered by it times ten this past week. What I mean by that is that usually it's not so bad, but when almost everyone you care about does this annoying thing it makes my head want to implode.
So what is it that is bothering me so much? It's actually a very simple thing. Something that I know comes from people out of concern and love, but it doesn't change the fact it drives me up the wall. In fact most the time when this thing happens I'm picturing myself punching your lights out.  This  thing that is so annoying is the you can't do that things I hear on a regular basis.  What do I mean? Hear are a few examples:
     "You can't swim alone. It's to dangerous for you."
     "You can't drive a long distance. It's dangerous."
There are many more. Some epileptics take these phrases to heart and don't do anything. They never drive, swim, boil water, walk up the stairs alone, and etc... Does that sound like living to you? Living in a bubble trying to shield yourself from all the what if's and could be's.  I don't think it's living.

Sure having a seizure disorder adds some risks. Having a seizure disorder while pregnant has added risks, but I don't dwell on what could happen. If I did I would not have a job. I would not be a student. I would not be a wife. I wouldn't be able to drive. I would never have experienced the sheer joy of the ocean. I would be a lonely girl still living with her parents. Deeply depressed and wondering why continue to breathe if living with seizures is designed to steal life and it's joys away from me.  Heck I probably wouldn't have even found control like I have. Why? If you view the whole thing as hopeless then why consider testing for brain surgery. Which is when I found control after all.

When I decided to go for testing I knew it was a choice for my own health. Not just because you can get hurt while having a seizure, but because at the time I was at my limit. Mentally I just could not cope with it any longer. I was tired and wanted answers. I was desperate. If I had arrived to that mental state without breaking some of the rules of activities we epileptics shouldn't do. I would never have considered brain surgery. In all honesty if I didn't ignore those rules I would have spiraled into depression and possibly my own suicide. 

Ignoring advice and doing what my heart tells me to do has taught me life is worth living. Has kept me away from such dark thinking. So when someone says Don't it's to dangerous. What I hear is don't live life. Let your epilepsy win. or at his moment in time let being pregnant with epilepsy define who you are.

Recently I let loved ones win one of those battles, but in all honesty when I let them win this time. A part of my heart was broken. I knew I was ignoring who I was and what I fought years for just to make them feel better. Make them feel better in exchange for making myself feel like a piece of shit for giving up on things I have fought for a long time. It is quite honestly something I will look back on for the rest of my life with shame for not insisiting on my way. How can I be a proud mother when I back down on what is truly important to me? The whole inicident put into question who I am and who I should be? Honestly thinking about it brings me to tears. While telling someone they can't out of love may seem like the caring thing to do. In my case it does far more damage than it helps. The incident which I won't go into has left a deep scar that I'm not sure will ever fully heal. It's something I hope I never have to explain to my child why I gave up something so important to me. I certainly don't want my child growing up thinking that your dreams don't matter. Only what others think about what your doing does.

So loved ones next time you see me going to do something or talk about something I want to do. Even if you have nightmare senarios in your head please keep your mouth shut. I care to much about what others think that care about me and I them. I just may give up a goal, dream, or something I truly love to make you happy leaving myself in tears at the end of the day. You have to let me make my own decisions and let me live with the consequences. If you can't do that well then you aren't much of a friend at all.

Love you-
Susan Thomas

P.S. I'm sure I'm not the only epileptic that feels this way!

The above video is of the sixth fittest woman in the world who happens to have epilepsy. This was the first time she opened up about it. She is my hero!

Taking a Step Back

I know it's been awhile since my last post and I thought it was about time I post another entry. First I want to admit that I haven't been updating this blog because I'm working on something right now that I feel is more important. This blog helped me realize how important a subject I feel epilepsy to be. It's so misunderstood and because of that many people with epilepsy face unfair treatment in unexpected places. All epileptics deal with the possible SUDEP differently. There are people like me who are determined to live a normal life despite the threat of Sudden Unexplained Death due to Epilepsy. To fear what could be is live in a world of fear which I refuse to do.  Then there are others who do live in fear and let that fear dictate how they live. Many refuse to learn to drive or to even boil water on a stove for fear of having a seizure at the wrong moment. I understand their fears and do realize my particular case is mild compared to many, but I see so much wasted potential in their lives. I am always hoping they find courage to live the life they deserve.

I've decided to step back from this blog because I have felt a calling in my writing. A calling I've been trying my hardest to ignore for a long time. I feel like I'm being led to write a novel loosely based on my own experiences as an epileptic. I stress the word loosely. There are other stories of the realistic fiction genre I have been feeling compelled to write for a long time, but have been trying to ignore. Mostly I've tried ignoring these stories because it means thinking on things I don't like to dwell on. For me the best way to deal with my epilepsy and pursue that normal life has been to pretend that I don't have epilepsy, but through this blog I've come to understand I truly have a passion for getting the truth out there. I think I will be able to better do that through a story. So I'm finally letting God lead me in this writing and am officially putting my fantasy stories to the side. I may never finish them. Honestly they were a tool that got me through everything. It was my way of escaping reality. I don't feel the need to escape anymore, because for the first time in a long time I'm truly happy with life.

I'm not going to shut down this blog. Instead I'll post only every once in awhile. I'm may write about my past experiences or talk about current progress of the story I've decided to call "Craving Normal". My personal deadline for a rough draft is the end of November. I'm still outlining at the moment. If you are a regular follower of this blog feel free to pester me about my progress. I'm famous for procrastinating.   If you want to get a feel for my writing style head over to my other blog imaginary worlds. I won't be posting any short stories by me anytime soon, but while I work on my story I will be posting stuff from my great grandma. She is an amazing writer and a bit a head of her time.   My husband helps me with posting her things so this blog is more regular. My own original work is on there to, but I'm taking a hiatus from short stories unless I feel strongly I need to write something. 

In other news I'm pregnant with my first child. A experience when planning that is filled with worry. Any epileptic planning to have a child (woman wise at least) has a lot of added risks. So when we knew we were ready to start growing our family we sought a OB that had expeierence with epileptics. At first I was classified as high risk and I saw a OB that was considered a fertility specialist, but has had extensive experience with epilieptics. Once I became pregnant my numbers were very healthy and I switched to a normal OB that also has experience with epileptics. To this OB my epilepsy is no big deal because one she can handle it and two it hasn't been an issue thus far.  We are expecting a baby boy and I've had a normal pregnancy so far. A lot of worry that wasn't neccessary. The only thing I have expereicned that is something that happens to epileptics is sometimes my speech is impaired. For example I won't be able to say certain sounds for periods of time. Usually a vowel sound. It's more humourus than serious. From research my husband and I have done it's normal and nothing to worry about. It should stop once the baby arrives.

That 's all for now. God Bless you all!

Cleveland Clinic

Cleveland Clinic in Black and White (Photo credit: Wikipedia)

EEG shows abnormal activity in some types of seizure disorder, but may or may not display abnormal findings in PTE. (Photo credit: Wikipedia)

There came a point in my life that my epilepsy became just to much. I had been searching for control for years and had no luck. I had tried so many different medications in hope of at last finding control that my doctor was running low on ideas. Previous tests really hadn't been much of a help. He had now brought up the option of being tested for surgery.
When I first heard that option I freaked out a little. The idea of some doctor operating on your brain can be scary. So I firmly told family and friends that I wasn't about to let a bunch of know-it-all doctors play with my brain and screw me up even more. I even thought that hey having seizures all the time and never being able to drive wouldn't be so bad, but I was at point now where the battle was something I was having trouble keeping up with.
The added stress at work wasn't much of a help. I felt like I was in the wrong for working there while my epilepsy wasn't under control. The horrible nightmares I had at night where I would die, be tortured, or kill someone I cared about was another load of stress I really didn't need. The dreams were vivid and often had me worrying about them longer than I needed to. Simply put I was miserable and fighting to find happiness was taking a lot of my energy and I didn't think I had the strength to keep fighting with incompatible meds and having seizures that would take away hope.
So I told my mother that I was considering the surgery the Dr. had mentioned and my mom asked the Epilepsy Center for information about the surgeries. We were given a very detailed packet about what goes on. I thought about looking through the information, but I already knew what my decision was going to be. I was going to tell my Dr. I was ready to be tested for surgery. I was afraid that the contents of the packet would change my mind so I never opened it. I didn't want to know.
The appointments leading up to my week long stay at Cleveland Clinic are a bit of haze because I was trying to block out the information given to me. I just wanted to show up and let them do what they needed to do to fix me.
The current meds I was on seemed at the time to be controlling the seizures, but the side effects were hard to deal with. The meds actually hindered my ability to communicate with people and absorb information. For example if someone asked my opinion of a movie I recently saw I was unable to tell them my opinion  I wasn't able to find the words to describe it verbally. So I would usually respond with generic answers like Good or see for yourself. The only way I was able to communicate like normal was in my writing. My parents described it like I was two different people. One had trouble communicating and the other was excellent at communicating and putting fresh images into your mind.
This wasn't the only draw back of the meds either. If the Rx would give me a generic brand I would seize. Or if I took a pill a little late or dropped a pill while taking them without realizing I would seize. So the meds offered an illusion of control that I didn't really have.
So when I did check in for my stay at Cleveland Clinic I knew that I wouldn't be taking my meds for the week and that I would be hooked up at all times to an EEG machine so that they could record my seizure and be able to tell how to best help me and to determine if I could have surgery.
Most of the stay was a blur  Mostly because of the seizures I had there make it nearly impossible to remember the stay. I mostly remember some really bad food and my mother who stayed with me having to go get me some decent food. I remember them giving me a drug to temporarily stop any seizures while they ran a test of some sort, but the reaction I had to that medicine was not a good one and I don't remember it to well. The drug they gave me made everything move and wave at me. This includes the pizza they served me to the walls, ceiling, and my own skin. Imagine little things with smiley faces suddenly rising out of your skin and waving at you. I was freaked out and just decided to sleep it off. That really is all I remember of my stay.
When all was said and done I found out that I was not eligible for surgery. That they were about 90 percent sure that I had generalized epilepsy and that I had been trying medicines for the wrong kind of seizures and they changed my meds that continue to work today. There was a small chance that I have a harder to spot focalized epilepsy that spreads throughout the brain so fast that it appears to be generalized. They decided not to do more tests unless the meds I'm on were to fail for some reason.
Although I don't remember much about my stay. Cleveland Clinic marks the point of a turning point in my life. After that I slowly regained control of my life and that would not have happened if I hadn't gone. My one regret is that I was so stubborn for so long. The whole mess could have ended sooner if I had just asked for the necessary help.

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• How Epilepsy Surgery Can Control Seizures
• Diagnosing Epilepsy: The EEG Test