"True Story Bro"

I find myself now, more often than not, discussing my epilepsy in comedic ways. It has been pointed out to me that I do use humor as a coping mechanism. Is this wrong? Epilepsy has caused me to go from an intelligent woman to a bumbling idiot who either replaces words with similar sounding words whose definition is completely wrong for the context, or forget them entirely. Then there are the days when I mash several words altogether into a new word. Then the days when "making words bad". My physical features have changed. My face is aging rapidly. One eye is drooping and I gain and lose weight due to the medication. I am self conscious about all of these things. My reaction? Point them out to others before they themselves have a chance to say something first. And make fun of myself. They get a good laugh, I appear to be ever confident....win/win? Hardly. Every time my epilepsy is brought up in public I am both ashamed and immediately exhausted. For having to tell my story one more time. To explain to them why I chose not to talk about what the doctor believes caused it. To explain that every single social situation I'm put in drains me of everything for having to maintain such a nonchalant ere about me. It's a fucking facade. I don't want to be talking to you nine times out of ten. I don't care that your child got honor roll, or that your husband and you went on a cruise. I can't go on a cruise. Go fuck yourself. Just like I don't care to talk about my personal life. Social norms are exhausting. Don't get me wrong...there are times...Once or twice a year...When I haven't had a seizure in a while, I'm rested and I feel healthy and happy and I will talk your head off. But chances are that me staying out until ten o'clock with you coupled with that one beer you "absolutely insist" on me having and the anxiety of not showing any kind of pain will cause me to have a seizure the next day.
Anyhow, my best friend basically pin-holed me into doing a new project. I was looking for a photography campaign to start. A collection of photos to stimulate the mind emotionally and logically. I began with a sort of "True Beauty" campaign, but Dove has already done this. So she asks, "What are you passionate about? What makes you angry? What do you love?" She also pointed out that I'm not exactly the "warm and fuzzy" type. I am the RAWR FUCK YOU type. So what do I get passionately angry about? "Bipolar?" "Yes," she said bobbing her head in a agreement yet there was a questioning tone in her answer. "What else?" Avoiding the subject altogether I answered "Domestic abuse...." She nodded again. "Well yes but you aren't currently in a domestically abusive relationship so,...." I knew what she wanted. And it was lurking just below the surface. She wanted me to come to the conclusion on my own and I was point blank refusing. Finally said it out loud. "Epilepsy." It blurted out of my mouth like a child having to admit why they're in trouble. Angry, blunt, and with a hint of condescension. "There you go!! I knew you'd get there" She exclaimed sarcastically. I didn't want to do this collection, and I knew why. Because photographing life with seizures forces me to stop using comedy and down right refusal to acknowledge to cover up my epilepsy, and focus inwardly on my ability to function. She spat out ideas for a few moments, and then we put the collection to rest for a bit. Until I noticed later that evening, that the mother fucker had created an epilepsy board on Pinterest. Oh my meme! I started browsing through Epilepsy Problems memes, and started laughing. Hysterically. And then nodding in agreement. I had always known that millions of people suffer from this, but never really knew anything but sob stories. "I just can't,..." and "The pain,..." and "How can I ever have a social life?" plagued my phone and desktop until I finally stopped reading. This was the first time I had ever noticed that there are others like me. Who can find comedy and humor in their disorder.

 

These people deal with their epilepsy the same way I do. Which then blew the first breathe of life into my project. Why can't it be funny,fun and touching at one time? Challenge accepted. I aim to create a photographic collection of life with epilepsy and add the funny to the terrifying and pitiful. Goal set. Game on. For future postings on this photographic endeavor and my thoughts and feelings on facing this head on, see my new blog, "True Story Bro. One woman's photographic guide to comedic Epilepsy"

December 2, 2011 Update

So I spoke to Joshi (and her goofy looking protoge) today and here's where it stands:
1: I let her know YES I WANT VNS ASAP let's do the surgery PLEASE
2: I STILL haven't heard anything about my video EEG

However, upon finding out that we had video documentation of tonic clonic seizures and partial seizure activity, she became very excited. There is a possibility that if we get enough documented seizure activity I may be able to bipass a trip to Stanford altogether, and go straight into surgery! (Which is AMAZING because I am SOOOOO ready!!) The Topamax is still causing tingling and a "pins and needles" sensation in my extremities but seems to be slowly going away, so for now I'm going to stick with the Keppra, Topamax, and Vimpat. I am not suppose to see her again for another eight weeks but between now and then I am suppose to record ALL seizure activity (both convulsive and parital) burn it on to a disc and drop it off to Joshi's office giving her a basic timeline and understanding of my seizures since she already has an EEG and knows it's frontal lobe oriented this seems a little more then necessary anyway. And having others take care of my kids for up to six days while I'm stuck in a medical center with nothing to do but read a book watch a movie or stare at a wall....ugh...

That about covers today's visit other then:
DEAR GOD ADVENTIST HEALTH SPRAY SOME AIR FRESHENER AND SANITIZER IN THAT WAITING ROOM PLEASE!!!!! FOR THE HEALTH AND WELL BEING OF YOUR STAFF AND OTHER PATIENTS......on second thought...just throw some gas on it, light a match and walk away.....blech....

November 25 update

Had a huge moment of panic the last few days when the tips of my fingers started tingling. Was doing okay to keep most of my seizure activity under control this week (or at least hide the activity I was having) for the greater good. This finger-tip thing threw me off. Did a little research and found out that this is actually a very normal side effect of the topamax. Also found out that because I will be increasing my dose again tonigh, this will actually get worse over the next few days. So I suppose I need to begin reading through the little inserts that comes with my meds prior to panic.
Meditation seems to be helping keep the convulsive seizures down a bit. (That and a handful of pills)
Next appointment with Joshi is on Friday and I'm foolishly hopeful we will have heard something back from Stanford. I have had plenty of time now to think this over and roll with it....now I just want it done and over with. It may not be "a matter of life or death" but at this point it absolutely IS a matter of life....if nothing else...

November 17 update

I still couldn't tell you whether or not the new medication is working or not. It's truly hard to say. I'm still on the same dose I was before. Tomorrow it will be doubled daily. One week post it will be tripled and will finally be at maximum dose. Even then it may take a week or so to really know if it will be of any use to me.
Went to bed later last night and woke up earlier this morning and it seemed to make me feel a little better. (Theory being that part of the reason for my severe fatigue was too much sleep) I'm suffering from the afternoon lag now, but that is still to be expecting seeing as 1. I exercised today and exerted energy and 2. I AM still taking the 1/2 keppra in the morning so grogginess is still clinging on like I owe it money.
Memory problems have slightly improved it seems. Simple little things still elude me; forgetting I'm making tea and letting it boil over. (Being resolved by sweet talking everyone else into making it for me :P) and trying to remember if I took my medications...(which has been resolved with a medication chart which I check off when I take my pills) and also remembering to make phone calls. That's my biggest problem. "Kiera did you call so-and-so?" "Crap I forgot I'll do it right now" *sees a shiney* (two days later) "So what did so-and-so say about this-and-that?" *moment of panic* "....shit..." So my therapist recommended me getting a whiteboard to write down my daily "to-do's" which I have purchased and plan to mount above my monitor so that at no point can I say "oh I didn't see it. Problem is now I'm sitting here writing on it and forgot what it was I was suppose to write!!
Anyway....the basic need-to-knows are as follows:
1. STILL waiting on referral
2. Working on tapering up my meds
3. Trying to work around the memory thing- any other suggestions are welcome
4. The hand scratchy thing is STILL not controlled but HAS been confirmed as seizure activity
5. Gelastic seizures are most prominent - convulsive are now pretty rare for me (thank god)
6. Decision for VNS now entirely rests with Dr. Joshi.

Opening Med. Blog

This is the beginning of my medical blog. I will be occasionally logging entries on my seizures. Changes in them, any new problems I am incurring, etc.....I don't feel this is absolutely necessary but there may come a day when I'd like to remember what life was like when I could remember what life was like.

Lately I have been having mostly gelastic seizures.  (View Gelastic Seizures) My hysterical laughing fits leave me feeling tired, worn and with a moderate to severe headache. My fingers are also doing an uncontrollable "scratching" movement that began on 11/2. I spoke to Dr. Joshi about this on 11/4 but she really had no resolution for me. My Kepra has been cut (thank god!!) to a half dose at night and a half dose in the morning, although taking it in the morning causes a sort of all-day-grogginess. Four separate medications now; none are 100% effective. The date of the Stanford Video EEG is still in the air. The insurance company doesn't want to help push it through and my neuro is determined to have it finished before she okays me for surgery for the VNS Therapy.

For anyone who is curious, the medications I am on are as follows:
Topamax: New- hasn't reached maximum potential yet so I have no clue as to whether or not it works
Keppra: KEPPRA BAD!! KEPPRA MAKE KIERA NI NITE!!
Prozac: I think we ALL know what that's for
Vimpat: On maximum dose, would work well if we actually had a second decent medication to assist it

The VNS Therapy really is my only hope. I am finally at the point to where I really don't care what the risks are anymore. I want it done. I want it done now.

"Anything can cause you to have seizures at this point, Kiera. Stress, illness,....even PMS...."
In laments terms Dr. Joshi is trying to say "Kiera, you're fucked! Thanks see you in three weeks!"
For the record- anyone who needs to see a neuro- I actually HIGHLY recommend her. She has done an AMAZING job with me. It's not her fault that my brain wont tolerate half the medication she gives me and I'm allergic to the other half. So here's the scoop then for anyone who is curious so I don't have to repeat myself fifteen thousand more times:

1. Still waiting on Video EEG to Stanford
2. Can't get surgery without video EEG
3. On the LAST OF THE AVAILABLE MEDICATIONS NOW!! -NO THERE IS NOTHING ELSE SHE CAN GIVE ME!!
4. Attempting to keep lists/ask questions to try and remember things.