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.

Related articles

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

Kroger Wars

I started working at Kroger in the summer of 03. I was excited to be working there. I had agreed to pay half my college tuition so having a job after high school was important. This job seemed to be a good fit. I was going to be a full time college student who had a part time job to help pay for school. It seemed reasonable. I was getting enough hours to help with tuition, but not so many hours that I didn't have time for school work. They agreed to be flexiable with my schedule.
When I intereviewed for the job I had been seizure free for almost year so I didn't mention my eplipsey. Besides according to state law I didn't have to mention it and if the employer were to ask questions about my health it would've been illegal. One thing I did do was research on if I had to say anything about my eplipsey before I applied anywhere.
On my first day I wore a med. bracelet and that is when they found out. This was in the days my parents were determined to get me to wear a med bracelet or necklace. I've always found the things hideous and hated wearing them. I had a tendency to play with them till they broke and after they broke I always hoped they wouldn't be replaced. I didn't like advertising I had a health problem on a piece of jewlery. So the braclet I wore that day was my fifth or sixth one and this one had lasted longer than others because it had a stretch band making it much harder to break. Which meant about 50 percent of the time I "forgot" to put it on or I took it off when my parents weren't around.
In this case I forgot I was wearing it and a manager asked me about it. I told them what it was for and after I told them it wasn't a big deal. That it had been a long time since anything happened they seemed fine and we proceeded.
The job was simple enough. I was working in the non foods department. Which meant I stocked items in the store that weren't considered food. Like the shampoo aisle, pharmacy, or light bulbs. The few things we stocked that were for eating was the candy and baby food.
When I first started I worked at Ticketmaster and only stocked if they really needed my help. After maybe a year Ticketmaster became part of customer service and I was stocking all the time.  I had seizures after being hired within my first year or so but they weren't at the store. So it wasn't a big deal.
I did eventually have one at the store and of course they were required to call 911. They also called my parents. They handled the situation beautifully and I went home early that day and crashed.
When I went back to work no one really made a big deal. Which made me happy. I did give them a letter eventually telling about my condition and what to do. They needed it for my file. After that everything was fine. My first couple years were fine. The work wasn't exciting, but it was work. I made a fair amount of friends and recieved good scores at employee review time.

A few years down the line all the managers I started out with had either transferred elsewhere or been promoted. Their had been a number throughout the years but they were usually really good about respecting department heads and how they schedule and manage their employees. None of them really had a problem with my eplipsey. Not even when I had to miss several months of work because I was so toxic on medication it was a challenge just to stand. My neurologist actually wrote them a letter explaining everything. Basically saying we were having trouble finding the right mixture of medication and to please be patient. That at the moment I wasn't able to work but would return when things became more stable.

Eventually a batch of managers came in that weren't as tolerant about health issues and had plans to change everything. The worst thing was they didn't respect each other's areas. They were constantly going to departments they weren't in charge of and knew nothing about and telling us do something the wrong way only to have the department head have us tear everything down when finished and do it right. The rate of how fast we worked decreased becasue everyone was confused. One person would tell someone to do something and another would tell them to do something that contradicted the other thing. It was like they weren't on the same page and more concerned about marking territory.

Eventually I had a very small partial seizure at the store. I was concious , shaking , and lost control of my emotions. They handled everything fine, but when I returned things changed.
There was a steep decrease in my hours. Such a big decrease that I lost health coverage for a few months.
Then everyonce in a while they would give me over thirty hours. So I could work anything from 4 hrs a week to 30 hrs a week.
On top of that if there were three managers in the store they all would give me conflicting jobs to do. They would have me do it drastically different from anyone else in the store. I was told to do things in a way that  would take 3 times as long as the other way.
It wasn't a surprise that my performance went down. I was so busy trying to figure what I was supposed to do I usually didn't get much done. Then on a few occasions when I would be working in close proximity to a manger they would say things like "Are you sure you should have a job? Won't that make your health worse?"
I began to go home and try and list five reasons to keep working at Kroger. I was becoming miserable and depressed. Not to mention stressed from trying to force happiness at work while I was actually just doing my best not to look angry. I began to have horrible nightmares every night and I felt like I was stuck in hell. That somehow hell had been brought to me for some reason and I couldn't fathom why.
I wanted out but was told that I couldn't quit because I had health insurance through kroger and it would be stupid to quit.
Everytime I had a seizure or my meds weren't quite right they would drop hours or tell me to do something wrong. The head of my department figured out was going on and eventually told me to just do things the way she said and only worry about what she said. So I would do what she said and do what the managers wanted when they were around. I felt like I had to be two people at work.
Eventually though I just couldn't handle the hell of work and my eplipsey at the same time. It was to much. Even with help from God it was to much. I finally decided to go to Cleveland Clinic to see if I was eligable for surgery. (more on that in another post)
When I finished Cleveland Clinic I became stable. The problem was I was miserable at work. I had been unable to find a job with my degree because of lack of experience. Not to mention that kind of work was just to boring for me. I wanted to do something I would enjoy.
Eventually everything came down to one night. By this time I had recently met my future husband Anthony on line. Things seemed to be going well. Things were starting to look up. The problem was there was just one thing I hated in my life and I didn't see a way out.
A way out was offered to me. I went to work one day and began my shift.  The assistant head department gave me a list of things to do and asked me to work overtime at the same time. I said okay to the list of things, but no to overtime because I had an obligation after work. I didn't say it in a way that was clear and didn't realize I wasn't clear. So I clocked out at the scheduled time. Twenty minutes later I received a phone call from Kroger. They told me I had to finish the overtime or it was considered an automatic quit. I couldn't go back I had somewhere to be so I told them I guess it's an automatic quit. Said thank you and hung up.
In retro spect now that I know where it happened I am to blame for not giving a clear answer. Had I known I was unclear I would have clarified things with the asst. dept. head before I left. I was ecstatic when I quit. For the first time I felt truly free to pursue a future I would be happy with. I would be able to do so without worrying about seizures.

College Woes

When I finished high school I was relieved, but at the same time not quite ready. Things I'd been told by teachers at school had me convinced that if I waited to go to college I would be a life long loser and would never make anything of myself. I wasn't really feeling ready to go to college. My seizures weren't under control, I couldn't drive, and I hadn't taken any sats or acts, but I felt like I had no choice.
I applied at a college that I knew I could get into and not have to leave home. I chose Davis College because it was a safe choice. The way things were going medically leaving home for college wasn't really an option. When we went to get information and I got a catalog with majors I still had no idea what I wanted to major in.
I chose not on what interested me, but what would be a safer choice for someone who may never have control of their seizures. I chose safety over happiness. I flipped through the office administration section. I knew a desk job would be a safe choice. That way I couldn't fall and hit my head. The medical administration section caught my eye. I knew that if I went with that route that if I had a seizure at work their would be a doctor around. What doctor wouldn't know what to do? Besides doing paperwork and things like that always seemed kind of fun.
When college began it proved to be a much friendlier environment then high school. The petty gossiping and rumor mill was something most people were over and didn't really have an interest in. That was one perk, but school work didn't get easier for me. It was still hard for me to learn anything with all the medication I was on. There were times I couldn't explain simple things like what a book or movie was about. With the meds I was one it became a challenge to communicate. I got used to giving one word answers ( a habit I haven't broken) and when asked an opinion I would find a way out of it. I could write what I wanted to say but couldn't actually say it. It was like my hands and mouth were connected to two different brains. It was infuriating.
On top of that I was determined not to let anyone at school know anything was wrong. So even though walking normal was a great challenge and taking notes was practically impossible I forced myself to do it. Some days I didn't take notes because I was to dizzy to read what they were talking about and would just doodle away in my notebook.
My first semester I made dean's list, but I burnt myself out doing it. I used every ounce of energy I had to accomplish that and realized I didn't have enough energy or oomph to keep it up when the next semester began in a few short weeks. So after the first semester my grades began to slowly decline.
As if that weren't bad enough one night when I was in medical transcription class I had a grammal seizure in class. Normally that's bad enough, but this would be my first episode ever of rolling seizures. Apparently on my way walking to an ambulance they had to lay me down because I started seizing again. Apparently they couldn't stop them and I ended up in the er where they gave me a drug to stop my seizures.
I ended up in the hospital over night and had successfully scared the crap out of my family and ruined any chances of passing myself off as a normal student.
Davis College is a very small college. The same mentality as a small town. Everyone knew when I went back. Constantly asking me how I was doing and if I was okay. Which all I wanted was to be left alone. I usually ended up in the library researching vampires. Research that has come in handy for a fantasy story I'm currently working on.  Researching random things allowed me to escape everyone being so nosy. I didn't know these people and they wouldn't leave me alone.
I had a couple more seizure while attending Davis College. I also flunked keyboarding class twice because my hands wouldn't stay still. When I graduated I wasn't happy. To this day I look at that diploma with shame. I wasted a lot of money and time trying to fit in when I should have looking for what would make me happy. Davis College is a decision I regret to this day. The only thing I got out of it is now I have degree that says I know how to schedule appointments. The degree is just a bad reminder of a time in my life I'd rather forget.

Understated Dangers

So as anyone following this blog knows I'm a person living with epilepsy. What bothers me is not the condition itself or even what the condition has put me through. God saw me through it one piece and shared any pain I may have  been going through. What really bothers me is the attitude of the general public about epilepsy.

Now I understand that it wasn't to long ago that this condition was untreatable and the only thing doctors could do was lock a person with epilepsy up in a mental institution. I even get that some people are so under informed that they believe this condition isn't a condition, but a person simply possessed and a simple exorcism will cure everything. I even get that hundreds of years ago that people like me were burned at the stake accused of consorting with the devil. 

It's time to pay attention and learn about epilepsy. If Breast Cancer can have all these organizations dedicated to finding a cure why not epilepsy. Don't get me wrong I would love for their to be a cure to breast cancer, but what people fail to realize that epilepsy kills to. It's known as SUDEP. The largest amount of SUDEP deaths are in the UK. All it takes is for a person to have a seizure in the wrong part of the brain and they die. Or to be doing the wrong thing at the wrong time and then their life is cut short.

What so many people think is their is medicine for that. It's no big deal. Heck they even have surgery now. Nothing to worry about.  First of all I have a mild case and just because I'm under control now doesn't mean I'll never have a seizure again. I actually saw a YouTube video where they mentioned a girl who had been seizure free for ten years and then bam she had seizure and died. I don't what she was doing at the time. Maybe she fell and hit her head wrong or maybe she was driving.  

Their are many cases of epilepsy that can't be controlled with medication and are not even considered for surgery because of the type of epilepsy they have. If you have focalized you have shot, but the surgery doesn't guarantee you'll never seize again. It could just jump to another part of your brain and then there are those like me with generalized seizures. When we have a seizure the easy way to put it is the whole brain goes wonky. Someone with generalized seizures would need an entirely new brain. 

Did you know that their is a whole month dedicated to epilepsy awareness. It's the month of November and the color is purple. When it's a cause like cancer it's everywhere. Heck even Kroger's joins in, but not a whisper of epilepsy during it's month of awareness. The only news I get in that month is from organizations that have their hands busy trying to just help all the epileptics. 

Doctors don't mention SUDEP because their still a lot they don't know. They don't want to tell a person their is no cure for this and yes you can die from it and it's already claimed thousands of lives completely unnoticed!

Don't Move

Sleep is a very good thing. As an epileptic who tends to have seizures when I'm overly tired it's important that I get my full night's rest, but I'm not going to talk about my sleeping habits and how bad they maybe. It so happens that there are two seizures I can remember quite clearly. These two are without a doubt the worst I've ever had. Perhaps others I had were worse, but at least I wasn't conscious and aware of what was going on. There is nothing worse than when you know you are having a seizure and being powerless to do anything about it.
Both of these seizure happened about the time I get up on the weekends. One happened during high school and one during my college days at Davis Community College. A college I don't recommend. It was during that period of sleep when you're almost awake, but not quite. Maybe twenty or thirty minutes from forcing yourself out of bed. It was during this time I was shoved into the awake and alert mode.
I tend to sleep on my side, but I shift a lot in my sleep. It's not unusual for me to wake two or three times a night to fix my covers. It was when I decided to shift that it became apparent something was wrong. I went to shift onto my back and just moving sent my body flailing out of control. I couldn't stop. My arms were swinging back and forth banging the mattress and my legs were flailing up and down and I couldn't stop. I found myself unable to say anything. After a minute or two it stopped but my limbs still had a really tense feeling. Stupidly I decided to try and stretch things out and it sent everything flailing again including my head this time slamming back and forth on the pillow.
This time when I stopped I forced myself to lay extremely still as if my life depended on it. I pushed my body as hard as I could into the mattress to prevent myself from moving and starting anymore flailing. A person can only keep this up so long and when you are pushing your body into a mattress as hard as I was the body will cramp. So I eventually had to move and every time I moved my body would flail from 30 seconds to a minute. I even had to slow my breathing so I didn't set it off again.
I felt like a prisoner in my own body. I really had to go to the bathroom but was unable to get up. I was hungry and wanted to get out of bed but I couldn't. This lasted a good ten minutes. The most agonizing ten minutes of my life. I don't believe I said anything the first time because I was a dumb teenager who thought that seizures didn't happen that way for me. When it happened again I did say something. Although it was strange in my particular case I was told it was a seizure.  Thinking back on those two seizure if I could trade those experiences for rolling seizures or even a grandmal I would do it in a heart beat. I don't remember those and I get to sleep the rest of the day. But those I usually only sleep an extra ten or fifteen minutes and I remember every second. I wouldn't wish those on anyone.