The Seizure Dialogues...November is Epilepsy Awareness Month :)

"If you want to know what a five-minute seizure is like, go stick your head in a bucket full of water and take deep breaths." - Neil Ernst, ER Resident.

 ...and afterward your mouth tastes like pennies.



A lot of people don't know this, because it often gets completely overshadowed by Breast Cancer Awareness Month, October, but November is Epilepsy Awareness Month.

In honour of E-Awareness, I thought I'd share some of my owne epilepsy-related statuses and stories from the last year :)

April 5, 2011-
- I *seriously* need to sequester myself until my brain gets used to this drug increase hahaha. Seriously. Remember when I told you in one of my "Epilepsy Stories" about the time I cried at that stupid gum commercial?? Sooo I totally just cried because I was "so proud" that I fixed our sink's drain stopper earlier.....you read that right. Our SINK. THIS MORNING..... It's gonna be a very long week hahaha

 November, 2011-
‎- Keppra Story#2- there's a tiny black bug who hangs out in my room 24/7; I named him Mitey (he just looked like a Mitey). Well this morning he wasn't in his leaf house so I thought he died (crying ensued). I'd shut him out last night and he was seriously waiting to be let back in. I cried when I found him hahaha and that's the story of Mitey-bug.


April 7, 2011-
- is it horrid that I mentally shout "Score!" every time I hear an ambulance because that means it's not for me? I feel SO evil, but at the same time, I'm thinking, "Not injured, no hospital, baby!" (I have that scribed on the reverse side of my epilepsy med ID bracelet). I'm mean. Excuse me while I cry about it (growl. Keppra...)

April 8, 2011-
- peaced out from church...I was tempting fate. Good decision though- "my" paras were parked across the street eating lunch :) They asked me how my seizures were, I asked them how their day had been, we talked a little more about my epilepsy you know, like it is between buddies. We parted, so we could both eat, with, "Maybe see you soon. Happy Easter!" Oh dear hah

April-

- okay maybe not so much now; headache down to my teeth.I have seriously been inside this library cave for 9.5 hours. Without leaving. Without eating. Without drinking. OMG. *screech* @#*&$^!%?!@!@!@?? No drinking?!?! Sh!t-I forgot to take my meds. Feck that, not-even-due-yet paper. Peace out cave!!!!

Mother of God....
BYE GUYS.

"‎- so weepy from my drugs it's hilariously ridiculous! I'm laughing at myself because I'm crying so much. A favourite professor sent me an email wishing me well with my EEG tests this coming week and I got all weepy because his class ended and he was one of my favourite teachers. I'm sad to see his class end but he'll still be here so I can visit him in his office whenever I like! It's definitely not like I'll never see him again haha :) Oh Keppra you ruin me hahaha 

These updates are from my time in the hospital for my VEEG....pretty good stuff here too haha

‎- so nervous for this VEEG- I will never EVer be okay with seizure induction but (the filthy! the sick!) part of me hopes I will seize. I don't care about Absence seizures-they happen all the time and they don't hurt me. But if I were ever to have- on my OWN, with nOTHing creating or inducing it- a grand mal I would want it there.

- We are "let out" for three 10 min. walks per day (trimmed down if there's seizure activity *sadface*) and, since our doors are naturally open, we get to meet (and greet) new friends. Just made another friend, Rachel, who stopped by my door- we've been smiling at each other all day as she walked by :) I like when we are allowed out.

 ‎- oh no...they're giving me EEG Method Testing today. I don't care about those other tests, they only give me small seizures, but they're going to give me the photic strobe test and my body is going to betray me in all sorts of ways. I'm not eating...or drinking...and I'm asking for restraints."

"‎- whoa. The epilepsy patient I briefly talked to yesterday stopped by to talk more and I realised that she has some pretty significant brain damage because of her seizures. Also, the lady in the room next to me just died.
Uh....

‎- scoping out my new neighbour across the hall....there's seizurey-something but she's sleeping and I'm dizzy so meets shall have to wait until later.

I'm sitting on this damned exercise bike until something jerky happens....

(...4 hours later...after riding the bike for 3.5 hours...)

‎- I didn't hop off, I was lifted...
I passed out- kind of the opposite of a seize.
*sigh*"

- there are exactly 6 alarms going off right now on the unit and a Sprite can seriously magicked itself out of the air onto my tray. My reward for doing nothing?"

"‎- any possible seizure trigger has been petted and fluffed...
(caffeine, alcohol(s), aspertame, plenty of meat-eating, contrasted lights, being awake for over a full day, cold air, cold "shower", and piping hot food. Oh, and the threatening grimace of the PS40R in the corner)
...all that's left to do now is sit and wait."

"‎- O Holy God, please? Just give me one seizure that seriously kicks me into the floor. I don't mind...I welcome it! Seizure? Please?

"- the EEG is off....I'll kill myself if I have a seizure right now. Seriously. Positive note, my meds are being re-started! :)

 

 Then there are the pitiful sad days;

"‎- it might sound soo stupid but I don't want to leave my room. I know I need to be chill about everything and just deal with it but I am so worried about seizing. Sundays are always the very worst. My brain is probably just laying in wait..."

 The sad yet funny days;

"‎- I have 4 BandAids on my neck from electrodes, glue hair, bruises from the IVs that are so big I look like a heroin addict, and now a f---ed up wrist. *sigh*...changing meds sucks."

- woohoo, test grading movie night :) Then library for homework...and a seizure..."

 

 The I've-accepted-my-fate days/ the "I love "my" EMTs days";

"‎- judging by how it's kicking off, today might actually be worse than yesterday. I'm actually accepting my fate and am expecting a seizure. *sigh* This is going to be just great.

"‎- back to campus...I'm buying cookies for the EMTs, poor lads...

The REALLY?!?! days;

"‎- What gives? No seizures since Stanford and when I *finally* get motivated and am happily studying like a good girl, my fingers get numb. Well at least I can shriek properly and without guilt- I'm in the No Shhh Zone.
There are a lot of people here. My brain hates me."

"‎- my phone won't be on for the next day so don't bother texting or calling or Facebooking. Worst seize in a very very long time; blood was everywhere. So was every other fluid. Bugger epilepsy. Bugger seizures. Bugger everything. I'm sleeping for ages."

 

And of course, the "Fuck you, Epilepsy!" days;

"‎- cheesecake? Tucanos? Toffee? It's totally going to be worth the lurking seizure :)"

 

I love telling funny stories about my epilepsy too- I used to be incredibly private about it. I'd hole up in my room for days, not ever tell anyone when I'd had a seizure, never tell my doctor or my parents, etc. Then I realised that it really sucks but it's really not that bad. I also realised that if I wanted things to get better in the entire realm of epilepsy, but especially public ideas and views on E, that I'd have to advocate. So it became my equal and I learned to laugh at it. 

This will not be the last blog post I do this week- I'm in the middle of a paper and some other work, but I needed to post this so that people realised that I'm never ashamed of my seizures and I never let them stop me from living my life.

Tech Stupid?

When I signed up for three business classes this term, I signed up for one 3 credit class and two .5 credit classes. The MCOM 3 credit class is difficult, no doubt about that. But the ISYS classes? We meet for 30 minutes once per week (we're supposed to meet for 50 but the TAs are like...meh). 

Yet I get THIS when I went to turn in my quizzes. Excuse me?!

My head is throbbing from a headache and I'm about to either cry, bang my head off the desk, or pass out.

I can't figure out how to get the damn thing to work either.

I'm not so stupid that I can't figure out how to work a feckin' quiz.

What the hell is going on here?

MCOM

This class is twice per week for three hours (2-5, right in the middle of the day) and is apparently too much for my brain to handle as I always fall asleep (I seriously JUST YAWNED thinking about it!). I honestly thought it was the new anti-convulsant I'm on and apologized/ assured him things would be under control the next class period but when it happened again despite my valiant efforts and my given word and even after chewing gum and having my phone buzz in my pocket every two minutes, I knew it was just me.

My professor is really nice and though his class is on the dry side, he genuinely cares about his students. I have no idea how to stay awake beside eating caffeine pills which tend to give me seizures. Key word on "give me seizures". My neurologist and I agreed that was not the only reason for my seizures but it was indeed related to the frequency and duration of the "events" as everyone seems to call them lately.

Anyone have any surefire ways to stay awake for three hours in a warm room while talking about punctuation?

I love my prof but his class is so very boring. His homework is busywork, which I can't stand. Practice exam, memo-drafts, group projects...everything I really don't like. I want tests, these memos, presentations, and research papers. I don't even mind his memos but drafts of memos that are only one pages long feel like a waste of time. I just want to write the one page and be done with it...

I would bring my laptop but the dumbass kid in the front row would figure out a way to act just like a freshman and suggest I bring in candy and doughnuts for the next class period.

Feck that.

I'm going to be on campus for 14 hours today. I kind of want to die?


-EpicEpileptic

Children :/

Why is it that I've become such a grouse when it comes to kids?? I used to love children! (Well not when they were crying or messing themselves...) I still like little kids- chasing games and swinging them around to their utter delight always makes me smile and laugh- they're cute. :)  Sure, they can have intense tantrums (I've stopped calling them fits because that's another word for seizure and a temper tantrum is nothing like a seizure beside the flailing that some kids exhibit) but when they're outside and free to roam, I love chilling with any kid. I've been told kids love me because as a rec therapist I have all the good games to play with them haha :)

Despite my enjoyment of children outside, it seems like every single time I'm in the library (the BYU EMTs and the Library Security both asked me if I'd stay on the 3rd floor as it's easiest for the paramedics to get to me if I happen to injure myself like I did a week ago...) there is a screaming child or crying baby just freaking out at high volume. I have to be in the NoShh Zone (a place for students to congregate to talk about group projects and the like) as that's the only place where there are computers and that's "The Place", I guess, for mothers to bring their young children when they need to be in the library. I know that the No Shh Zone means no shushing, but I almost feel like parents are taking advantage of that. If someone was yelling at the top of their lungs, people would think it was impolite and the glares from other patrons would usually be enough to get the person to control themselves and act like a normal person again (think Dr. Banner becoming The Hulk, then returning to his normal human state), but mothers don't seem to notice the way other people look at them (I'm pleased, and relieved, to say I'm not the only one with an incredulous WTF look on my face haha). Why is it that when mothers bring their kids into the library (a place for students to be able to focus on their studies and collaborate on academic successes and projects) they feel like they are completely entitled to ignore their obviously discontent children? I say I'm upset at the child and annoyed, but the truth is I'm most annoyed with the mothers. Children, especially babies, like the one I can hear screaming right now, don't have a choice as to where they go. Their mothers are the ones who take them places. A child clearly doesn't want to sit somewhere and "be held captive" haha. Mothers should, for the sanity of other people, and for the happiness of their child, find an alternative...something like....oh, a babysitter.

Maybe "because I'm not a mommy" I don't understand, but from my end it seems pretty clear...
When I go to the library I don't want to end up writing on the blog here simply because I can't focus enough to write true academic work; I want to be able to focus on lecture assignments and projects that need finishing, NOT listen to a mommy talk baby-talk to her wailing flailing child.

I feel mean. Am I being a complete jerk about this? I feel like at least my thoughts are realistic and understandable but maybe my impatience with parents lately is clouding my judgment.

I borrowed a set of headphones from a guy next to me, who shall be mentioned here in eternal thanks, named Stephen, and am embarking on an academic journey free from conniptions.

I'm probably going to catch hell for this post, in which case I shall certainly offer my opinion on the matter later...likely in my MCOM class?

-EpicEpileptic.

Newfangled Contraptions, more Seizes, and Psychotic Dreams

I have a professor who talked about a whole bunch of stuff on April 24th...the Tuesday I was still in the hospital. He apparently talked about something called MyITLab- a place where you can take quizzes as many times as you like until you get the grade you like. Sounds cool, right?
It probably is....except when you can't find it. I emailed one of the TAs and he said something about "what we talked about on the first day of class". I emailed back and told him I wasn't there the first day because of a 10 day hospital stay but he has yet to email me back. I hope he gets it before midnight, when it's due. I came in at 8:30, figuring a 20 point open notes/packet quiz would never take me 3.5 hours. I thought it would take me something like 15 minutes for each quiz (there are two 20 point quizzes which are apparently and assuredly easy). I find myself nervously sitting here waiting for an answer. I'm writing another program facilitation/intervention plan just to pass the time. I find I really enjoy writing them- it gives me an opportunity to be creative with a purpose. I make up clients and their histories, their problems and needs, then try to think of an out-of-the-box way to administer therapy.

Apparently writing FIPs is easier than using a program meant to make things streamlined and fast. I guess the "streamlined and fast" thing is only for professors?

As a student, I'm lost. What gives?


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Epilepsy has really been kicking my ass lately- Tuesday I had a seizure where I banged my face on a desk on my way down to the floor; blood was everywhere. So was drool and...well...other fluids. Worst part is that these stupid seizures have been happening in public far more often than I'd like and far more than they ever have before. I know have no control over it and everyone is so kind but I feel guilty that people have to help me. In fact, I not only feel guilty, I hate it. I hate possibly taking these people away from a legitimate emergency. The only time a seizure is an emergency is when there is blood (which is why I wasn't upset about Tuesday's visit from the Uni-town FireMedics) or if my seizure is lasting longer than 8 minutes. If that's happening then I don't mind waking up to the radio chatter, six people in intimidating blue, and blood pressure cuffs. Which really hurt after a seizure. I usually cry and steal the pulse-oximeter.  Postictally I get obsessed with that thing. I'm thinking about buying one and putting it in my "seizure box" so they can trick me into holding my own while they get theirs back. My brain is easily tricked! That will probably work, actually (hmmm.).

 The campus EMTs don't make a big fuss about helping me and neither do the city Paramedics, but I feel so guilty. I know it's their job and all but surely they have things far more important than watching a girl do a fish-out-of-water routine, bleed everywhere, and soak themselves in drool. I also hate that they've been happening in places where other people can see. I used to be able to seize in private- it wasn't that I was ashamed of it, rather that I feel like it's a more personal act- I didn't want people to see me that way because I didn't want them to put my in that box where I become "that epileptic girl" instead of EpicEpileptic- the dancer, linguist, patriot, poet, and loyal friend. I have many positive things in my life that I feel get overshadowed by my seizures. Maybe I'm wrong and it's just me being self-conscious but that's certainly the way I've felt these last few days.

We have finally discovered (well, have likely discovered) the cause of these freakishly frequent seizures; caffeine. I began taking Excedrin Migraine for my constant headaches and the staggering amount of caffeine was making my brain go NUTS. I took it earlier today before I talked to my doctor and I'm not taking it ever again unless it's in a controlled environment (I'm taking Advil LiquiGels. They were doctor recommended :) )

Basically he told me I was going to seize until all that shite got out of my system. All I could say was, "Oh joy."

--------------------------------

Funny note- I had a dream last night (after the police man deposited me on the couch where I proceeded to sleep for 11 hours like an addict on a binge) that I was in hospital but had to play pipes at the senior ceili so I took out my own IVs and "escaped". Played just fine, went back to the hospital and was readmitted like nothing ever happened. It was one of those dreams where it felt so real I turned on my level-lamp and checked my arms for IV bruises.

I am not a daydreamer.......

I had a dream last night (after the police man deposited me on the couch where I proceeded to sleep for 11 hours like an addict on a binge) that I was in hospital but had to play pipes at the senior ceili so I took out my own IVs and "escaped". Played just fine, went back to the hospital and was readmitted like nothing ever happened. It was one of those dreams where it felt so real I turned on my level-lamp and checked my arms for IV bruises.

--------------------------------------------------------

In my last post I told you all about a professor of mine that treated me like a regular person after a seizure and how much I really liked that. He didn't make me feel funny or awkward. Well for every reaction there is an equal opposite reaction. One of Newton's Laws.

I have a professor that isn't like that at all. I missed a chunk of information when I had a staring spell and when I asked him if he could repeat the all of three sentences I'd missed, he glared at me and told me that I should pay better attention and stop daydreaming. Being judged by eyes is hard enough but when people come out and say things like that, it really cuts me. It was the last straw really and I got emotional as I told him it was none of his business but that I wasn't daydreaming, I was having a seizure. He told me the only kind of seizures people had were convulsions. I told him he needed to read a legitimate medical book and stop being so rude to students, especially the ones that are explaining something important to him; that he couldn't tell if someone had epilepsy just by looking at them. He was saying something about how difficult it was to be a professor and how if he had to go back and repeat himself every five minutes we would never get through the material. I could only say, "I'm sorry, Professor. You're right. Who am I but a number on your roll sheet? I was too presumptuous to assume I actually had a name. You've only been teaching this class for 20 years. The same material day in and day out, every single semester. You have the same tests from 10 years ago and you have TAs that grade all of your papers and tests and quizzes for you. The only thing you have to do is press that tiny button that changes the PowerPoint slides. Your life must be so hard."

---------------------------------------------

I have a professor who talked about a whole bunch of stuff on April 24th...the Tuesday I was still in the hospital. He apparently talked about something called MyITLab- a place where you can take quizzes as many times as you like until you get the grade you like. Sounds cool, right?

It probably is....except when you can't find it. I emailed one of the TAs and he said something about "what we talked about on the first day of class". I emailed back and told him I wasn't there the first day because of a 10 day hospital stay but he has yet to email me back. I hope he gets it before midnight, when it's due. I came in at 8:30pm, figuring a 20 point open notes/packet quiz would never take me 3.5 hours. I thought it would take me something like 15 minutes for each quiz (there are two 20 point quizzes which are apparently and assuredly easy). I find myself nervously sitting here waiting for an answer. I'm writing another program facilitation/intervention plan just to pass the time. I find I really enjoy writing them- it gives me an opportunity to be creative with a purpose. I make up clients and their histories, their problems and needs, then try to think of an out-of-the-box way to administer therapy.


Apparently writing FIPs is easier than using a program meant to make things streamlined and fast. I guess the "streamlined and fast" thing is only for professors?


As a student, I'm lost. What gives?
-----------------------

Tonic-clonic seizures have really been kicking my ass lately- Tuesday I had a seizure where I banged my face on a desk on my way down to the floor; blood was everywhere. So was drool and...well...other fluids. Good think I always carry extra trousers. Talk about embarrassing :/ It was 11:45 or whatever and everyone was peacing out of the library as they were wheeling me out on a gurney with a sheet over me and gauze in my nose trying to stop the bleeding. I had blood all over me and was holding their hospital pillow-case over my face to keep the blood from dripping onto the floor. I think having them in public is probably the worst part of it. I know have no control over it and everyone is so kind but I feel guilty that people have to help me. In fact, I not only feel guilty, I hate it. I hate possibly taking these people away from a legitimate emergency. The only time a seizure is an emergency is when there is blood (which is why I wasn't upset about Tuesday's visit from the Uni-town FireMedics) or if my seizure is lasting longer than 8 minutes. If that's happening then I don't mind waking up to the radio chatter, six people in intimidating blue wielding blood pressure cuffs.  I usually cry and steal the pulse-oximeter.  Postictally I get obsessed with that thing. I'm thinking about buying one and putting it in my "seizure box" so they can trick me into holding my own while they get theirs back. My brain is easily tricked! That will probably work, actually (hmmm.).


 The campus EMTs don't make a big fuss about helping me and neither do the city Paramedics, but I feel so guilty. I know it's their job and all but surely they have things far more important than watching a girl do a fish-out-of-water routine, bleed everywhere, and soak themselves in drool. I also hate that they've been happening in places where other people can see. I used to be able to seize in private- it wasn't that I was ashamed of it, rather that I feel like it's a more personal act- I didn't want people to see me that way because I didn't want them to put my in that box where I become "that epileptic girl" instead of the dancer, linguist, patriot, poet, and loyal friend. I have many positive things in my life that I feel get overshadowed by my seizures. Maybe I'm wrong and it's just me being self-conscious but that's certainly the way I've felt these last few days.

We have finally discovered (well, have likely discovered) the cause of these freakishly frequent seizures; caffeine. I began taking Excedrin Migraine for my constant headaches and the staggering amount of caffeine was making my brain go NUTS. I took it earlier today before I talked to my doctor and I'm not taking it ever again unless it's in a controlled environment (I'm taking Advil LiquiGels. They were doctor recommended :) )



Basically he told me I was going to seize until all that shite got out of my system. All I could say was, "Oh joy."


--------------------------------


I'm too tired to deal with all this nonsense. I don't want to do anything tomorrow- just read a leisure book, write another FIP just for fun, buy actual food, eat the actual food, and sleep on and off. I have my black-out shades that are extremely epic so I'll probably just hang those and pretend it's 3AM.

Seizing the Day

This week has been what could be described as the most mild circle of hell haha Monday kinda sucked because it was my first day of classes and I was assigned (this is a legitimate metric measuring unit) sh!t tons of work, all of which is due today. 2 memos, 4 quizzes, a test, an article, and a group activity. I've done the quizzes. Test, article, and group activity aren't due until 2pm so I figure I have time to write a blog post before I fully immerse my head in one of our study caves. :) I like blogging a lot- it's like an online journal of things you don't mind sharing with other people. It almost lets them step into your shoes.

Anyhow, in this class our prof assigned a group activity. I get nervous in group activities. I have no idea why beside the fact that I don't have a whole lot to say in a class unless I choose to speak.If I'd like to talk, I'd raise my hand. If I'd like to be silent, I'll be silent and observe with my arms crossed and my left leg tapping. So group activities are usually a no-go for me. Too awkward.

In this same class, a very interesting exchange happened; it cemented my view that BYU is really a glorified Disney Movie filled with people who have sometimes the most immature and ridiculous notions. I have to laugh though, it was so incredibly juvenile it was eye-rollingly hilarious haha. We had a general discussion about in-class laptop useage. Our prof didn't say he hated laptops and wanted to banish them to the deep abyss of our satchels, only that he was thinking about their presence and the distraction they could potentially cause (Oh, look! Suzy is on Facebook- awww, she's looking at her wedding pictures...and messaging her husband...while asking him about their baby. Wait, what did Prof say about commas?) but there was a random guy in the front row who said something like,"Using a laptop can be, like, a privilege- if someone notices someone else on Facebook or ESPN or something, a student next to them can say something. That person can then bring candy or donuts or something to the next class." I rolled my eyes and thought, "You have got to be joking." Our prof seemed to think about this but said something about losing half of that day's participation points instead. I didn't mind the whole "bring candy thing"- although I rarely eat candy since I went vegan- even though I thought it was ridiculously juvenile; my problem was the "report your neighbor" bit. For God's sake- I'm 23 years old and we're studying compound sentences, and appositives, for the uncountable time in my undergrad career. If I feel like checking my email for the 30th email I'd received from my ISYS class, I feel like I should be able to do that, especially since I sit in the aisle of the back row. No one's looking at my Facebook. Also, I use my laptop for accessibility reasons- if I have a staring spell, I can listen to the audio I've recorded and rewind to a part I missed. This kid can leave his laptop at home but I'm bringing it. Kid's got issues haha

Despite my good-natured groaning, my prof for the Monday/Wednesday class is incredibly nice; I discovered this when I had a small seizure (I stood up and stuttered something about cookie sheets then happily told the class that I have epilepsy- these are called partial seizures (only one part of your brain is tweaking) haha) in his class and when I came out of it he just said nonchalantly, "That was interesting. You know, you can probably get decently cheap cookie sheets at WalMart." When I looked at him like "Have you lost your mind, sir?" he said, "I think you were having "a moment". (I guess that's what he calls them?)You were telling us the merits of having your mother send some baking pans. Then you told us you have epilepsy. Again, interesting. Just sit and rest then and let me know if you need something. Alright! Back to notes." I blushed so hard I thought my face would explode with heat but it was a new sensation- the blushing quelled after a bit when I thought about the whole situation. The prof didn't make me feel like a freak, he didn't make a huge fuss out of it, and he didn't really care. It was like I'd asked a question and he was simply answering it. Monday ended nicely I suppose- dinner, bed. I had dry Top Ramen for dinner- a serious indication of my need to go to the grocery store. Ahh the life of the uni student... :)



Yesterday was hard too- it started off with a rather hurtful exchange of texts in which someone asked me why I asked them a favour but didn't ask how they were doing. They said, "You never even call me. Do you even care?" It put me on the defensive and I responded in kind with how hurt I felt that the only time they ever ask me how I'm doing is when I'm doing something epileptic or laying in a hospital bed; I took it further with the mention that phones work both ways. They called me a few minutes later but it was awkward because they probably wouldn't have called me if I hadn't said anything. They aren't really open about the reasons behind their actions so misunderstandings between this person and myself are frequent. Probably because we're alike in more than a few ways; we both have a tough exterior but have very soft hearts. "Keppra Moments" come on very strongly when someone says something that really digs into my side. I get upset in a more extreme (that's too harsh of a word) way than I would without the Keppra. I think it's the Catholic guilt ;)

On Tuesdays I don't have classes until 4pm when I'm TAing the university's Irish dance classes but I was on campus working on my FIP (an enjoyable but long degree requirement) since 9AM. I sunned myself in a few-and-far-between on-campus nap (I felt like a hypocrite as I take those Sleep and Creep pictures...it was almost with one eye open lest someone feel the desire to snap a picture of me sleeping haha), went to Irish, then my ISYS class which lasts 2 hours in a dark room (a recipe for awake fail). I was afraid as well about the contrast- when he was scrolling down I got an aura. It kind of freaked me out. I don't like that feeling at all (it's not like I don't know what could happen haha).

After ISYS I decided to head back to the library and work on FIP some more- I didn't even get the chance to sit down and take out my earbuds before this random guy started grilling me. I was like ??? as I didn't even know the guy and had never seen him before. What's your major? How long have you been here? Have you served a mission? How old are you? Are you getting any minor degrees? Why is it taking you 5 years instead of 4? Are you done with your religion credits?  Whew, slow down man! I couldn't work on my FIP with him talking to me incessantly like that and this stuff was...uh...let's see...none of his business? I was getting annoyed with him. I needed to work on this thing and I would smile and say, "Yes. Excuse me, I need to write something.", put in my earbuds and try to drown him out, but he would touch my arm, forcing me to take out my headphones, and engage in yet another conversation. I love meeting new people and talking but not when I'm trying to complete an extensive task! He was talking to me about Mormonism, he's philosophical Christian and I'm more Catholic than anything else at this point in my life (I realize constantly how very little I know about the Mormon church, which makes me feel like quite a bit of an outsider), but it was pretty harsh observations and though we were in the No Shh Zone I wanted to be like, "Dude, keep it down. They're going to kick us out if they hear you talking like that and I'm over this philosophical debate about Catholicism and the vows I made in the Catholic church and how they could be wrong. I want to write a program plan for a girl in the state hospital who is contemplating suicide, okay? Please just shut up! Thaaaank you!" :)

I stayed until about 10:45 and my FIP is almost done but I'm going to ignore anyone who accosts me in attempt for a conversation. Unless it's an EMT- then I'm always grateful to talk. Those guys/girls are my fecking heroes. I love them deeply. I'm their favourite epileptic...we all know that haha

Anyhow, I got off-track. During this annoying exchange, I felt an aura. I smelled bleach (an indicator) and paint but they had been doing construction so I figured my nose was a bit plugged and I was "smelling wrong" haha. I continued to type FIP and my fingers felt cold all the sudden...then they became numb. Aura!! Yay!

 I packed my satchel, nodded at Philosophy Dude like "Bye..." and walked up to the security desk and asked to have EMTs look after me while I seized. They called 911, which made me feel really bad, and they took good care of me but during my pre-ictal phase I wanted to sit up- they didn't realize I was in a seizure state and so when I fell I hit my face on a desk. Cue copious amounts of blood. To make matters worse, my clonic movements had me kitting my own knuckles into my face, smearing the blood everywhere and making it come even faster. Add drool on top of that and you have an extremely sexy combination.When I was postictal I was upset because I'd ruined (admittedly one of my very favourites) my shirt and I was having trouble thinking clearly. I was still in a seizure state. The BYU police woman who'd arrived first drove me home in one of the police cars- it was embarrassing though because I couldn't walk well enough so they wheeled me out (it was 11:45 so everyone was peaceing out of the library as fast as possible) on a stretcher and everyone was staring. I was covered in blood and was still a bit twitchy and I was stuttering a lot so I can see how that had merit but it was still awful. I soaked my clothes in cold water but there was so much blood it looked like someone had taken red food dye and squirted it evvvvverywhere. It was awful. I had to drain the sink about 6 times to even get slightly clear water. Nasty.

Anyway, I got about 5 hours of sleep so I'm probably going to seize again. I'm strangely okay with this- I'm going to sleep the whole day tomorrow anyway so I don't see a problem except for the EMTs are going to come again and I'll feel guilty. They were assuring me though that I was "a champ" as I was so well-prepared for everything (extra trousers, a sticky note with meds/my "not-injured no hospital" instructions/ a funny note for the EMTs/ my pill bottle with meds (it was 11 when they arrived and I was supposed to take them at 9 but Mr. Philosophy kept talking for ages so I wasn't able to get up to a water fountain...dumb). They were telling me about a guy a few years before that had epilepsy as well but he never took his meds so they went for him allllll the time. They were like "Seriously, that was annoying because he totally could have at least tried to do something about it. At least your doctors are working with you and you're trying to get control over everything. We're cool with coming to you- you have a great attitude and we basically just have to make sure you don't bang into stuff."

That's me, an exemplary patient! Even after some sleep I still feel like I got kicked in the face. My nose feels broken (it's not) and if I touch it wrong (I put Vaseline in my nose at night to keep it from getting too dry)  the blood begins pouring.

I just have to get through FIP and this business class. Aaaaaaaah.

After the business class I can stumble home, slip into some dance leggings, pull my duvet over my head, and glide into sweet oblivion at 5:30. I'll probably sleep 15 hours. It's going to be wonderful!

-Epic Epileptic.

VEEGs and One Day at "The Crib" (my sister's house)

I've been home for the last 10 days for a special EEG test called a VEEG- they video record you every second of every day you're there. It has been helpful during "events" as they call them. I like the word seizure (hey, that's what it is, no use sugar coating it, at least for me...) as that's what I call it but hey, seizures are dance parties so event does seem applicable.

Whenever I'm in an airport (like I am now) heading back to university, I'm always sad. I don't ever want to leave my family and the comforts of home- I'm pretty sick of UniTown (again, anonymity appeals to me...maybe later I'll give you an initial for me) as the culture is feckin weird...too many badly behaved children. I feel mean for not liking kids as much as I used to- I was spoiled by the adorable and very well behaved girlie I used to babysit...two years old and only a few temper tantrums and she loved to sit in my lap and listen to me sing her to sleep. Precious.  Now I'm surrounded by screaming children who have parents younger than me who seem to think their childrens are dollies to play with. Frustrating and rather annoying. The kids deserve better and deserve discipline to shape them into appropriate adolescents and adults. The real world isn't as kind as the majority of people in UniTown.

I'm also hesitant because I have two new roommates. I have no idea what to expect....hopefully they are better than my completely clueless, rude, obnoxious, and inconsiderate roommate from last semester. One of them has a therapy dog- a chihuahua. Tiny dogs make me nervous...I'm always afraid I'll seize and squash the thing or completely freak it out. I hope it doesn't bite- I don't do bitey dogs. At all.  I'm being very tolerant and trying not to be weird about a tiny dog as a therapy dog. I've juuuust filled out my application for adoption for a beautiful German Shepherd named Lady so I'm so excited for a service animal. It'll be interesting (I'm not sure if she's staying for Fall/Winter/Spring/Summer next year (the contracts are a year long) in our apartment specifically- she could move downstairs or something for next year...who knows) to see how a chihuahua gets along with a big fluffy (and assuredly very sweet) German Shepherd. Lady gets along with any dog according to the rescue so things should be just fine on her end but I have no idea what this little dog is like. Again, trying not to be judgy at all but I also reeeally hope he/she doesn't yap. I don't do yappy either. I'm letting go of all that though- I want this spring and summer to be great. I'm going to miss my wonderful roomie who I loved this last year. She's moving to a less expensive place this summer but I hope she visits often. I'm going to miss her chronic hiccups and her burping (it wasn't grody or anything- she made it comfortable haha)- having a roomie who was comfortable in her own skin was very very refreshing. Love her! :)

I'm also nervous about the Awkward Seizure talk. They've been in the apartment for the better part of a week though so they will have seen the Epilepsy Foundation's "Tonic-Clonic Seizure First Aid" paper I've printed and posted on the fridge. I hope they'll be understanding and not weird about it...I know it can make people feel very uncomfortable. That said I hope to God I don't have a seizure today- I've been wetting myself during my tonic-clonics recently, which completely completely completely sucks...talk about embarrassing. It's not like I can help it, everything is out of control when I'm throwing a seizure.

Well, it'll be about 4 hours until I meet her (and my other roommate that I know positively nothing about). I'll have the silverware talk (I'm a freak and absolutely can't stand other people eating off my silverware...I even bring my own fork to restaurants...the idea of people eating off the same fork as me squicks me), and then talk about my epilepsy with both of them. There goes my nervous butterflies. I don't know why I worry so much. Everyone I've lived with that I've told about my epilepsy has been wonderful (last year was so wonderful- soooo much of a relief to have such kind, helpful, and understanding roommates who dropped everything many times to come to my aid and keep me from injuring myself) but I still worry about new people...some people completely freak out and that always has be a bit worried :/


Hopefully the flight is nice and has few screaming kiddies, and my shuttle ride lets me rest a bit. I got off the plane, had a petit mal- people were very cross with me- I stopped in the middle of the gangway to the plane and they got mad. Once I regained my wits enough to get moving again, I promptly and legitimately forgot how to tie my own shoes.

*sigh*

Epilepsy.....


-EpicEpileptic

It's the hospital life for me....

As a girl with epilepsy, I've cataloged countless hours in hospital rooms and hospital beds. Hospitals are interesting places; while MDs are trying to figure you out, you can figure out a lot about yourself.

Every doctor's visit is different too...

• there are the normal hospital visits ("Hi Dr. #14, how are you?")

(if you're wondering how I came to that number I checked my phone contacts and counted the number of contacts in the ''Doctors" list in my phone)

• there are the worrying hospital visits ("Hi Dr. Random, I don't know you but.... there'safingerofminethatisprotrudingtheotherwaythanitusuallydoesCANYOUFIXTHAT?)

• the boring hospital visits ("Press Two for an unending prescription for Tylenol....)

• the routine hospital visits ("Yes. Yes. Yes.  *sigh*...Yes. Yes, yes, yes. Yes. No!!!")

• the frustrating hospital visits ("Oh, uh.., hey kid. Wow, you did a job on yourself there, didn't you! The nurse...oh you? Well, you did a good job patching yourself up. Doesn't look too bad. A bookcase? Geez. Here's an endless prescription for Tylenol.")

•  the WTF hospital visits ("Why is my hair sticky? And red? I feel exhausted go away, WAIT. Why the hell am I not wearing pants and how did I even GET here?! Oh God......")

and then, of course, there are the huge hospital visits.

I'm in the middle of a huge hospital stay at the moment. This is good I suppose- the last two of my visits were mainly consisting of myself remaining unconscious for days on end (status epilepticus is nothing to dick with). When you have 3 and 4 hour long seizures they pump you full of so many drugs you can't even remember your own last name. I'm going to quote myself here, "It starts with an F.......F.....no, it's not coming. I don't care. It's really long. O'Flynn!"

This hospital visit is, thankfully, consisting of me remaining awake for the most part (minus the last two days with sleep deprivation involved)

Students in Caves

There are these little "caves" in the library (you're basically in a tall box sitting in a chair and if you're lucky you have one with a computer in there, which must be for honing students' procrastination techniques) and these caves are highly coveted. Outside, you sit in rows like monkeys at typewriters. And outside it smells like feet.

My cave? Quite bare (though I did get a computer...probably not a good thing, as you can tell!) save the shoite loads of food I have to last me until closing time. The fellow in the cave next to mine keeps leaning back and giving me "looks" (I do have peripheral vision, buddy - maybe he'll actually read this and leave me alone) because I have a packet of crisps I'm savouring. I am very quiet though. Besides, that's why I have a cave! :) More looks have been sent my way- maybe I'm typing too quickly and am making too much noise with my prowess.

(LEAVE ME ALONE, IF YOU CAN READ THIS. WHICH YOU PROBABLY CAN. I CAN SMELL YOUR BREATH, JUICY FRUIT.)

Anyhow, despite Mr. Gum-Breath next to me, I am getting a fair bit done. I do wish I had a foot stool- my back is killing me- our chairs are wretched. I've been here for four hours and have another seven to go. Hurrah!

I'm so totally going to have a seizure; it's inevitable. I'm getting an aura and my eyes hurt from looking at this screen for too long. I brought my blue RayBans to help me out but I don't know how much longer those will stave it off. My brain is like a child waiting for fish fingers....completely impatient, hopping on one foot to the other, and whining...

In any case, Mr. Gum-Breath is gonna freak out when I get all stiff/jerky on him

(JUICY FRUIT, MOVE YOUR CHAIR OR PREPARE YOURSELF. I'M GOING TO FLAIL INTO YOUR LAP. JUST INFORMING YOU.) 

The EMTs are available around the clock so, yay. Despite the assurance of their comfort, I'm making frequent trips to the toilets in order to avoid any...embarrassment. (I always have extra trousers with me, just in case...)

I was listening to Pandora but I kept having to write down the songs as they were brilliant and I couldn't just remember the names off the top of my head. My brain hurts.

 Totally just bit my tongue. Awesome. This is going to be so much fun. I'm gonna go use the john- meh, before I get all "nothing's something's happening fudge, sleep cave, facilitation, word salad, hurrah, damned, merp" I'll sign off. 

SERIOUSLY JUICY FRUIT. I'D MOVE. :)