As you all know, I have epilepsy. I have grand mal, and petit mal seizures. I have also had several status epilepticus seizures..
Some info on status epilepticus seizures. (From eMedicine)
I'll start you off with the scariest.
"Mortality/Morbidity
* The overall mortality rate is about 20%; death most often is related to an underlying cause of brain injury
Sex
* Males and females are affected equally.
Frequency United States"
Approximately 50,000-200,000 cases of status epilepticus occur per year (using traditional epidemiologic definitions)"
Basically.. "The term status epilepticus may be used to describe any continuing type of seizure. ... Traditionally, status epilepticus was defined as 30 minutes of continuous seizure activity or a series of seizures without return to full consciousness between the seizures. Many believe that a shorter period of seizure activity causes neuronal injury and that seizure self-termination is unlikely after 5 minutes; some suggest times as brief as 5 minutes to define status epilepticus."
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Okay. Now that you know that.. I'll move on.
These seizures, my seizures, ARE scary. It's scary to know I could have a seizure and never wake up. I am sadly allergic to the some of the most effective and most popular seizure medications. I broke out in horrible rashes, and since I have asthma the reaction could have gotten worse if I wasn't taken off the medications quickly.
I am on two different seizure medications, and the doses keep been switched around, yet sometimes it seems like nothing is ever working. So, sadly, I have still been having rather current seizures. None this week thank goodness.. but still many more than we would like to see.
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These seizures affect my life in MANY ways. I am 20 and cannot drive. I cannot take a bath without having someone near me. I am not supposed to swim without someone near me. I am not supposed to be around hot objects since my seizures are so common. I cannot be in a locked room alone. I cannot be home alone for very long at all. I could go on and on.. I have no freedom. This is VERY hard for a 20 year old.
I am moving to the city were my University is in July, however due to the quality of on-campus housing (I am allergic to it - literally, it made me very ill) I have to live off campus. I am living in a very nice town house. Car-pooling to school is not a problem. It's easy..
However. It is impossible for me to get a job. For the last year and a half, my parents have been paying for all my expenses. From my car payments, to clothing, to food, to going out with friends, you name it, they've had to pay for it. But I am 20. They can't keep doing that.
You may be wondering why I cannot get a job... so.. I've mad a list of reasons. (Most of this list came with the help from my neurologist's nurse. She is the one who told me this is what I basically HAVE to do.. because I have no other options.)
*There is hardly any / if any public transportation around where I am living, so I am unable to take it to and from work.
*If I was to have a seizure at home, or at school, I would be out of work for days to weeks, depending on the type of seizure.
*Sometimes when I have a seizure, I'll have several sets days in a row, making me out of it for almost a month. Making me an impossible employee.
*If I was to have a seizure at work, I could easily hurt myself, or someone else by falling on them.
*If I have a seizure, any time, anywhere, and get hurt (like my past broken arm, or sprang wrist) I would be off work for another extremely long period of time.)
*Both of my medications have extreme side effects that make me very tired and weary, and unable to remember things clearly. Even at my university I have the aid of the disability office.
*I am under the care of many doctors, for my ankle, back, neck, seizures, etc, all which are often injured during seizures, and would need a lot of time off work for doctors appointments. (For example just this week I am seeing three doctors.)
*I sometimes have doctor appointments as far away as Indiana University Medical Center, which is three hours away, causing me to stay overnight. Making me miss work for two days.
*I have already been told I will most likely return for more Video EEGs, meaning I will be in the hospital stuck for at least another week.
*Also, since lack of sleep is the number one trigger of my seizures, and stress is the second.. Its quite possibly a job would cause both of these.
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So, to me it sucks. This is the last thing on Earth I wanted to do. I don't want to take money from the Government or from taxes. My neurologist is positive I will win my case, but I'm not getting any hopes up.. I know they are hard to win.
What do you think? I feel horrible about all of it. I just found all this out today. *sighs* It's like a huge punch in the stomach. I really wanted to be able to work. But now that I've wrote out all the cons, I realize theres really no way I can do it.. school alone is going to be so hard on me.
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