Post Marathon
Caroline ran the marathon, and I couldn’t be more proud. She is continuously blogging about it on her site, so please go visit & see how the marathon felt for the runner.
For the viewer, at home… It felt terrifying, and exciting, and wonderful all at once. I sat using my iPhone app, constantly hitting refresh. I watched where she was on the map TRYING to not feel guilty about being in Virginia while she was in NYC for me. It’s like, in some ways, we are connected. I watched how fast she ran, when she passed certain landmarks and I cheered, crying a lot, as she crossed the finish line. My best friend had done it. She has run one of the most prestigious marathons in the world, and she did it without accident or injury. She is an amazing woman.
After the marathon, Caroline and her boyfriend Adam, came to my town to visit and see what there is to be seen. My car, for the first time in over 6 months, got some exercise. After a couple of days in my town, mostly eating with very little site seeing, we went to DC to see the big city.
Anyone who knows me, and has gone site seeing with me in one of the “big cities” that I’ve lived in, or spent time in, knows that I can show you a city in less than 2 days, if necessary. DC was no exception. We didn’t hit any museums as to be honest that would have been impossible, but we did hit the monuments and I did give a brief history lesson (as best I could) at each of them. I was a walking encyclopedia and I was loving it.
After wandering up and down the Mall, we went to the National Air & Space Museum to catch a quick bite at the McDonalds and so they could wander around some more. At this point I was not feeling myself. My thoughts kept fluttering around to other places, and honestly I felt like I was in another world myself. As we wandered, I felt worse and worse. It got to the point I finally told Caroline to go find Adam and I’d wander the gift shop. I neither wanted to cause alarm, nor ruin their experience. Caroline, after what felt like days, came back with Adam and mentioned something and I know I said I needed to go back to the hotel. They were ready to walk, and I said I’d take a cab. At this point, I had lost everything. I was no longer able to keep my brain together.
To be perfectly honest, I don’t know how it all worked out. I don’t know if I TOLD Adam and Caroline to walk and enjoy themselves, or if they sent me on my way. I don’t even remember getting in the cab & giving directions. I don’t remember paying for the cab, I don’t remember getting to the hotel room. I remember nothing until an hour or so later when Caroline came back in. I was sound asleep, face down on the bed and I heard movement in the room. I felt like the life had been sucked out of me and there was nothing left but to sleep what was left of my life in that bed. A short time later I said to Caroline that I couldn’t move my legs. I’ve had this happen before, lovely atonic seizures in my legs. I’ve fallen down stairs, fallen out of bed, fallen goodness knows where else, but in my adult life it has never actually happened with someone else right there.
Caroline comes over and starts prodding at them, picking them up and dropping them. I think she felt to some degree I was joking around after all of the walking we had done. At this point I had started crying. This seizure is the scariest of my seizures anymore. It’s like being a paraplegic but knowing that’s all wrong. That your legs are there and you SHOULD be able to move. Knowing what should happen, and yet having the opposite happen is a terrible thing.
I have trouble connecting the dots for that evening. My memory is sketchy at best. A bit like going out on a bender and things being remembered only AFTER someone tells you about it. If only I really did have a bender, at least I’d be able to explain it easily.
Now, however, the vacation is over. The holidays are beginning and off we go to another adventure.
The Cost of a VEEG
So I got the first statement from UVA on my VEEG. How much? Nearly $58,000. This is before insurance of course, and this doesn’t count doctors, and other incidentals that I’m sure will come in. The funniest part of this was the $63 pregnancy test and the $207 charge for the doctor who read the test. I told them I hadn’t had sex in a very long time, and there was no chance that I was pregnant. They said they had to do the pregnancy test in order for me to have the PET test (which by the way they didn’t do). So for $270 they found out I wasn’t pregnant. Something I knew, and I told them. Wow. For that price I could have bought EPT tests for the whole floor.
I guess the $58,000 isn’t awful, until you start to think of it in real terms. It’s nearly twice my yearly salary, twice the cost of my college education, $4,000 a day… And for what exactly? We didn’t accomplish anything. I’m going to have to repeat it (that is, if my insurance doesn’t start throwing out everything I ask for)… A computer reads the EEG as it comes in, I didn’t have any blood work, I wasn’t on any life saving machinery, doctors didn’t have to do any procedures on me. In fact the VEEG unit (me in particular) is remarkably low key on a whole. It’s just wait & see.
I guess it wouldn’t bother me so much had we accomplished something. Had I walked out of the hospital one step closer to my temporal lobectomy. But in fact, we’re no closer to it than had I spent those two weeks in the Bahamas at some resort.
I am an Epileptic.
I’m also a woman, an advocate, a knitter, a friend, a sister, a daughter, a case worker, and many other things. These words combine to make me who I am. Right now, my battle with Epilepsy is first and foremost due to the upcoming surgery and so my status as an Epileptic comes first. I love this noun because within it comes so much. It says so much.
It means fighter, it means surviver, it means someone who has lived through fear, the unknown, doctors who don’t believe you, EEGs, family trauma, it means you’re an advocate, a little bit of a guru, a little bit of a know it all. That one word says so much. Because as an Epileptic you’ve had to do it for yourself.
I was called immature yesterday because I like being classed as an Epileptic instead of a person with Epilepsy. It’s not that I like my Epilepsy. It’s just that my battle with Epilepsy is that important to me. I’ve fought so long, so hard that I don’t want it to be ignored. Maybe someday my status as Epileptic will be last place in my list of adjectives for myself. I hope so. I hope I can call myself a wife, a mother, and a load of other things and an Epileptic last, but that day hasn’t come.
I am not a second class citizen. I am a fighter. I fight to bring awareness to my cause. I fight to be cured.I fight to get better. I fight to remember my pills. I fight to go outside everyday. To go to work. To remember what to do at work. To not have a seizure at work. To live my day to day life without having a seizure in front of everyone and live with all of the questions that would follow. I am an Epileptic and I am strong because of it.
A person with Epilepsy is such a weak phrase. It says so little about what we go through. It’s like “a person with acne”. Please, if only I could wash this away.
(This post has been edited because a 4am blog post has errors with grammar & syntax… That’s what happens 
)
Day 4
Doctors just came for rounds. I’m on sleep deprivation for tonight (not good), and as it stands right now I’m probably in for the weekend atleast. They’re hoping for a Monday release date if all goes well.
I’m here.
Just a quick FYI, I’m at the hospital 3 days in. I don’t have a laptop with me afterall so posting on my iPhone is difficult. I will post if there is any real news, and as always my Twitter will be updated.
The Final Countdown
As it gets closer to October 12th, I get closer to the edge of my sanity. My to-do list gets shorter, and then it gets longer as I realize I really do have a LOT to do before I’m really ready to go into the hospital. Last time I did this kind of testing I lived with my parents, and my sister, and I was really responsible for nothing. This time I live on my own, away from my family and I’m responsible for everything. Each time I think I have everything on my to-do list, I realize I’ve forgotten something. I don’t know when it’ll ever be complete.
This past weekend was supposed to be a “working weekend” where I spent the whole weekend getting things done. Instead I spent the entire weekend on my couch in a near comatose state. I just couldn’t bring myself to getting anything done. Which means this week is spent in a near “Flight of the Bumblebee” mode, but I just couldn’t do it. I couldn’t stress out over every little detail last weekend after the things I knew I had coming this week.
I have two to do lists one for work and one for home. Both are equally important, but only one I get paid to complete. I finally found someone to take care of Gator while I’m in the hospital (HURRAY!) I’ve found things to do (thank you all who have mailed me books, given me yarn, games, sudoku and the rest I don’t know what I would do without you). I’m just about done withe those types of things. My home list is down to the tedious stuff like cleaning, packing and getting Gator ready. My work list is nearly done as well. I’ve got things like “Contact JD and give her new VA contact info” and “Call UNUM so you will get paid while you are out!” on my list intermingled with things like “Suspend all licenses available, and send cases to court prior to Wednesday October 7th”. It’s an interesting list.
Needless to say, things are progressing.
I’m almost there. I probably won’t post until I’m at the hospital. Once I’m there I’ll probably increase in frequency to let everyone know the types of tests they’re running and how those things go.
Preparations
One month from today I go into the hospital for testing. It seems like my life has become a non-stop To Do list. Every time I get one thing checked off on my to do list another thing gets added to the bottom. Furthermore, I have multiple KINDS of to do lists. I have one for work, one for home, one for my my health insurance company and one for my short term disability insurance company. It seems ridiculous the amount of things I have to do.
The main things I have had to worry about are:
- Contacting my short term disability insurer and letting them know, then following up with all paperwork.
- Contacting health insurance provider, then following up with all paperwork.
- Contacting Human Resources, then following up with all paperwork.
- Finding someone to take care of my dog for the duration.
- Finding things to do while in the hospital (this seems to be the hardest one)
- Contacting Post Office to put mail on hold during the duration of hospital stay.
These preparations seem like they wouldn’t take long within themselves, and they shouldn’t. Unfortunately anything to do with insurance providers means they’re going to fight you tooth and nail. So paperwork has to be filled out perfectly. I’ve had to fill out paperwork so many times, it’s made me sick. There have been faxes flowing back and forth more times than I’d like to remember. It’s a good thing I started a couple of months ago, as it saves me the headache of stressing out at the last moment.
My dog has become my newest worry. Initially he was going to stay with a volunteer in the rescue group I got him from, unfortunately she’s backed out and now it’s a matter of begging for someone to take him for the initial hospital stay. I would ask family, but as they’re all literally across the country it’s impossible for them to take him. I cried last night when I realized that if I’m having this much trouble now, when January comes around I may have to give him back to the rescue if I can’t find someone to care for him while I’m recovering.
I’ll be in the hospital for as long as they need me there. I’ll be in for video EEG monitoring, PET scans, MRIs, and whatever else they can think of and for the majority of the time I’ll literally be wired into the wall, unable to leave my room. Since my family isn’t here, and the hospital isn’t in my town, I don’t expect many visitors. My main priority is going to be amusing myself.
The choice
I find at work that everyday someone asks me about the procedure. What I expect from it, what’s coming up next, when I go in the hospital, how long I’ll be in, etc. I find I start repeating myself like a marionette dancing for them on strings. Yes I’m scared, I go in for testing on October 12th. The surgery is roughly scheduled for January. I’ll be out of the office for approximately 6 weeks after the surgery. The side effects will hopefully be minimal, but sometimes there are drastic side effects.
I know they’re showing an interest in me and I should be thankful, but sometimes the urge to scream at them, “I’M NOT AN ANIMAL IN THE ZOO STOP ASKING QUESTIONS” rages inside of me. I force that urge down and I smile, trying to be appreciative. They try to come up with new questions, “Are the medications you’re on painful? do the side effects bother you?” I sometimes wonder if they get together during breaks and discuss what they’ve asked to make sure they don’t repeat questions on the same day. They must have some way of knowing because I never hear the same question twice in a day.
Many years ago, in High School, I made a choice. A choice to be vocal about my Epilepsy. To talk about my journey and to tell as many people about it as often as I could. To never be afraid of it and to document it and shout it from the rooftops if I had to. I always wanted to make sure that no one around me would be afraid of my seizures. That any epileptic that I came across would never have to feel that fear that I felt the first time I had to tell someone about my seizures when I was a young adult. I wanted it to be a known disorder. I wanted them to not have to be afraid.
That choice has followed me through school, my career, and now into this blog. When I first chose to have a chunk of my brain taken out (that’s the technical term), the first thing I searched for were blogs of first hand accounts. I wanted to find someone who had this procedure done, and I wanted to read their experiences. I found nothing. There was very little out there about the procedure besides what the doctors had written, and to be honest that was terrifying within itself. I wanted someone to tell me how it was going to be. So maybe I’m going to have to be that person for the next someone.
I don’t want sympathy, I don’t want kudos. I’d love readers, and people who have been through the surgery to talk and share their stories… It’s all about choice. It’s all about the decision we make and how we want to look at our life.
Please know another thing – I’m not always this uplifting. In fact, more often than not… I’m a little bit of a pessimistic problem child. 
The reason.
I like to go through life and pretend I’m perfectly normal. I drink my coffee (though I shouldn’t), I stay up late (yep, shouldn’t do that either), I drive to work (really shouldn’t do that), and I work, see friends, and act just like every one else. But in reality I have this thing in my head that makes me different.
I’ve always had it in there. It’s always been with me. I’m 27 years old and you think by now I’d be used to it. Most of the time I am. Most of the time I forget it’s there and I go through life drinking my coffee, listening to music, working with clients, walking my dog and just doing my thing. Then WHAM it hits me. I have to start all over.
You see, I’m an Epileptic. There are millions of us around the globe, all fighting to be recognized, and at the same time striving to be invisible. We want to be seen as normal people and forgotten as Epileptics but it’s impossible to be that. We walk around with cases of medication attached to us, we forget our names because of the side effects of those medications, we’re half asleep. Sometimes we gain weight, sometimes we lose weight. Sometimes we’re angry, sometimes we’re passive to the point of being asleep. It’s miserable.
So I guess I’ve kind of rambled on a bit, and I guess I need to get to the point of why I’m starting a blog (I’ve had a few before this one).
I guess the reason that I’m starting this blog is because I wanted to document a new journey that I’m beginning. A couple of months ago, I started seeing a new doctor. He’s a doctor that specializes in Epilepsy treatment (I’ve seen several before now but he’s the first who has suggested this). This doctor suggested that I look at having something that’s called a Temporal-lobectomy.
At first I said “No, absolutely not”. And he was really supportive of this. He upped my dosage of my hateful medication, and set an appointment for really far in the future. As I left the office, I thought about the surgery. I thought about how scary it was, all of the side effects, how miserable with Epilepsy I am now. Then I talked with my family.
On October 12th I go into the hospital for testing and we start this journey for real. I have a Video EEG done as well as a number of other tests to isolate the cluster of neurons that started this mess. Once that’s done, we’ll schedule the actual date for the surgery. It’s seems so surreal.
I still sit here and wonder if I’ll be the same person after. Will I wake up after the surgery and be the same me? Will I know my friends, my family? And really, my biggest worry some days – WILL I BE BALD? Every day I think I’ve come to accept the reality, I realize that maybe I’m not all the way there yet.
