Why I Don't Think Epilepsy Should be Classified as a Disease

Think for a minute about the word disease. What do you think of?

I think of viruses, and infections off the bat. A little bit more thought, and I think "Oh yeah, I have Crohn's Disease. Alzheimer's Disease isn't communicable either." The point is, most people think of disease as something you can catch, and don't always draw that conclusion. I have spent the past six years of my life saying "Epilepsy is a neurological disorder that I was born with, you can't catch it. Promise." I feel as though calling it a disease is counterproductive for many.

Language is such an interesting thing in that way, and it is something that I both despise and have a deep love for, often in the same moment. Like now, I feel like I have so many words inside me, and none of them want to string together to form the appropriate sentence. But even still- something inside of me deeply opposes this word.

 So many times people have described my seizures as a "fit", and honestly, even as an American, the word does not bother me, unless the intent is cruel or careless. To me, language is nothing without intent. But this word, "disease", is another beast. The intent is harmless. It is only a team of medical professionals innocently trying to describe something they only vaguely understand. This time though, it is the effect of language, rather than the intent, that I am most concerned about.

Here is a scenario: You are on the bus to work. You have a seizure. The medical community has classified epilepsy as a disease, and everybody on this bus knows it. Who is going to help you? People already are afraid of things they don't understand, and now it's a disease. What a daunting word. What a cursing word. You may hit your head, repeatedly. These things happen, we all know. But now, you're on a bus with 10 strangers who don't want to catch your disease. So nobody moves anything out of your way, nobody puts their jacket under your head. Nobody times your seizure or calls 911 if it's been too long. Everybody stares at you in fear. 

I do realize that this is a bit of a stretch. That enough people are educated enough to know better. But you never know. People already don't want to help. The ones who don't know better are going to be even less inclined now to help. This scares me. 

Hashimoto's Thyroiditis

I have shared half of my story with you on this blog, my experience with epilepsy. Epilepsy has greatly impacted my life, but so has Hashimoto's. Perhaps even more so than epilepsy, at times. This is a short narrative I've written to kind of give you a picture of the kinds of things I deal with on a regular basis. This was one day in particular, but most of my days go something like it. I'm sharing this with you because sometimes I feel like I have nowhere to vent, and I feel like people disregard me as lazy, or think that I make my symptoms up. Most people have no idea just how much Hashimoto's can affect a person, and it certainly imposes itself on people in VERY different ways. My mother also has it, and although she has many of the same symptoms, she seems a little worse off than me. Anyway, here it is. Thanks for reading :)

"Every morning, I wake up. I'm glad for that. I sit up in bed and, shooting pain. Both ankles. I stand. Pain in both knees. I walk to the bathroom, my hips are aching by the time I sit down on the toilet. I go make my coffee. Standing waiting for it to brew hurts the bottoms of my feet. Now that I'm thinking about it, they kind of itch. I go to my garage with my coffee and light a cigarette. I get halfway through my coffee before I remember that I've forgotten my thyroid meds. Too late now. (I have to take it on an empty stomach). I resolve to remember it an hour before lunch, which sometimes involves taking it to work with me, if I even feel well enough to go. Assuming I do, I log into the school district website and look for an assignment. I brush my hair, and notice that my eyebrows are thinning at the ends. I sigh, and pray that this doesn't happen to the hair on my head.

 I get to work, and I've forgotten my sign in number for the day. I have to open the website on my phone in front of the office staff. Embarrassing. I'm given directions to my classroom, and I sit down and read over the teacher's lesson plans for the day. I'm able to sit for about 15 minutes before the children arrive. I go through my day, rarely sitting down. Elementary schoolers don't really let you do that. I look at the lesson plan at least 50 times. I can't seem to remember a word of it. Lunch time. I forgot to take my meds. Damn. At the end of the day, I drive home. I'm so tired I forget where I'm going. I go a mile out of my way because I miss my turn on a divided highway. I get home, and all I want is to lay down. I don't. My niece is playing in the living room and runs to me as I walk through the door. I play with her for half an hour. I finally am about to go lie down, when my boyfriend gets home. He asks me if I'll do laundry today. I start the washer, and go to my bedroom. He asks how my day was. I start speaking and he interrupts me several times with questions. I start crying. I don't really know why, maybe I'm just frustrated. I realize that I'm running a fever. I take my temperature and sure enough. I complain about how I'm sick AGAIN, and everyone kind of just half listens. It seems like they've learned to just ignore me. I take the next day off to go to the doctor. I have a sinus infection, and I'm placed on another round of antibiotics. They don't work, and I'm back at the doctor two weeks later for the same thing."

Would Like Some Feedback on a Fundraiser Idea...

Hey! This is mostly for everybody who sees this posted on the facebook support pages. I'm considering doing a fundraiser for epilepsy awareness and research in my community and want some suggestions. As in, what would you all like to see at a fundraiser? Game ideas, food ideas... This is going to be held in South Carolina, if any of you are in the Charleston area and want me to keep you posted let me know :)

Pseudo Seizures

Been reading some really interesting things on pseudo seizures lately. Wanted to share with you all, because I know some people on the seizure/epilepsy awareness sites have them. (And because I found out that up to 20% of people with pseudo seizures also have epilepsy... ) HM. Not good, considering AED's can trigger pseudo seizures in some people.
Anyway, pseudo seizures (medically called Psychogenic nonepileptic seizures) are caused by some kind of emotional disturbance, ranging from stress all the way to personality disorders such as schizophrenia. They are a physical manifestation of trauma. Pseudo seizures are almost indistinguishable from epileptic seizures, except for one thing: there is no electrical disturbance in the brain during a pseudo seizure.
Contrary to what some people believe, pseudo seizures are completely uncontrollable for the person experiencing them, just like an epileptic seizure.
Pseudo seizures are usually treated with counseling and anti-anxiety medication, and people who seek the right kind of care often see full recovery.

It's not always a life sentence

I haven't been writing much lately... Because I'm not quite sure what I want this blog to be. I'm trying to give information for people who are new to epilepsy, but I also want to show that it's not always a life sentence. That there is life after your diagnosis, and that it shouldn't define you. Of course, there are now limitations on what you can and can't do. You probably shouldn't swim if you're actively having seizures, you shouldn't have caffeine, guanine, taurine or ginseng. You shouldn't eat soy, or take sudafed. Depending on where you are you may not be able to drive for up to a year after a seizure... But you can have a good life. I didn't start driving until I was 19. Living in a small town with hardly any public transportation made it hard to have a job, have any kind of social life, or go to school. I had to wait. And it sucks, but I did it. I'm in a committed relationship with an amazing man who understands that sometimes, I can't take care of myself. I babysit my cousin while I'm waiting to be certified as a substitute teacher. I write, I go out with my friends and I even planned my cousin's bachelorette party recently AND WENT BAR HOPPING!!! I caught the bouquet at her wedding :) My life is so happy, despite the fact that I live every day with the fear of having a seizure. It's very real to me, but I've learned that I can't let that decide my fate. I've been through some terrible things, as I'm sure we all have, but I'm ok. And that's what I think I want to convey here. When I was diagnosed, I searched desperately for people who were successful and had taken control of their lives, despite their seizures. And I took so much comfort knowing that contrary to what I believed at the time, it was NOT a death sentence, and my life was NOT over. I think it certainly stunted me a little, I am completely lost as to who I truly am... But at the same time, it's been a VERY interesting ride, and I wouldn't trade a minute of it, because it's made me very humble and more compassionate than I thought possible.
Anyway, I want to help you all, but I also want to share my life with you, messy as it is. So please love each other, stay positive, and don't forget your meds ;)

A little inspiration :)

So, I've been terribly busy lately, which is why I haven't been posting much, and posting something simple when I do... My cousin is getting married this weekend and I am her maid of honor :D So I've had an awful lot to do the past week. But here's another little inspirational story, that I was reminded of yesterday as I was reading the comments posted to a YouTube video about epilepsy. They were so mean, and ignorant and careless.... And I just want to remind everybody that no matter how other people treat you, you are a human being, and that you are priceless, no matter how cruel people are to you. Seizures do not make you worthless, even though it can feel that way sometimes. You are not a victim, you are strong. And even though epilepsy is a cruel beast, you have to keep fighting.

Copied from http://mbstories.quora.com/Who-Wants-This-Dollar-Bill

 Cassan Said Amer tells a story about a lecturer who began a seminar holding up a one dollar bill, and asking:
- Who wants this dollar bill?
Several hands went up, but the lecturer said:
- Before handing it over, there’s something I must do.
He furiously crushed it, and asked again:
- Who still wants this bill?
The hands continued raised.
- And what if I do this?
He threw it against the wall, letting it fall to the floor, kicked it, stamped in it and again held up the bill – all dirty and crumpled. He repeated the question, and the hands continued to be held high.
- You mustn’t ever forget this scene – said the lecturer. – No matter what I do with this money, it’ll still be a one dollar bill.
“Many times in our lives, we are crushed, stamped on, kicked, maltreated, offended; however, in spite of this, we are still worth the same.”

Y'all have an awesome weekend, don't forget your meds, and I'll talk to you Sunday :)

Are you a coffee bean?

Saw this story the other day- wanted to share it with you all. I copied it from http://www.learningplaceonline.com/living/inspiration/cup-coffee.htm. While you read, think of it in term of your loved one's, or your own epilepsy. How has it affected you personally? How can you make the best out of your situation, or help someone you love?

 

"A young woman went to her mother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved a new one arose.

Her mother took her to the kitchen. She filled three pots with water. In the first, she placed carrots, in the second she placed eggs and the last she placed ground coffee beans. She let them sit and boil without saying a word.

In about twenty minutes she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled the coffee out and placed it in a bowl.

Turning to her daughter, she asked, "Tell me what do you see?"

"Carrots, eggs, and coffee," she replied.

She brought her closer and asked her to feel the carrots. She did and noted that they were soft. She then asked her to take an egg and break it. After pulling off the shell, she observed the hard-boiled egg. Finally, she asked her to sip the coffee. The daughter smiled, as she tasted its rich aroma.

The daughter then asked. "What does it mean, mother?"

Her mother explained that each of these objects had faced the same adversity—boiling water—but each reacted differently.

The carrot went in strong, hard and unrelenting. However after being subjected to the boiling water, it softened and became weak.

The egg had been fragile. Its thin outer shell had protected its liquid interior. But, after sitting through the boiling water, its inside became hardened.

The ground coffee beans were unique, however. After they were in the boiling water they had changed the water.

"Which are you?" she asked her daughter. "When adversity knocks on your door, how do you respond? Are you a carrot, an egg, or a coffee bean?"

Think of this: Which am I? Am I the carrot that seems strong, but with pain and adversity, do I wilt and become soft and lose my strength?

Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after death, a breakup, a financial hardship or some other trial, have I become hardened and stiff? Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and a hardened heart?

Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain. When the water gets hot, it releases the fragrance and flavor.

If you are like the bean, when things are at their worst, you get better and change the situation around you. When the hours are the darkest and trials are their greatest do you elevate to another level?

How do you handle Adversity? Are you a Carrot, an egg, or a coffee bean? "

I took this story very personally, because I have faced more adversity than just epilepsy. And even though I found out that I am stronger than I thought I was, I am a coffee bean.

< 3 Sarah