Pre and Post Interview Thoughts

Entry before interview:

Tonight I had two very intense seizures, so I'm still a little shaken. Other than last night, today was one of the most optimistic days I've had in months. The warm fresh air was blowing through the window, I was listening to an ASMR video while coloring in the book Emily Ferko sent me. 

I was coloring because this morning because I felt like I had come to the end of the sketchbook from the hospital experience, and had little memories left from the seizures I've had in the past. I'm actually trying to visualize tonight's two seizures so I can draw them later. My memory is bad right now, and my blood sugar is low so I'm having a hard time concentrating. I ate some pizza and now I'm writing late at night, waiting for the food to hit my bloodstream.

So, as of right now I'm both excited and concerned. I shouldn't be either of them because if I'm too excited, I tend to get nervous, and when I'm too concerned, I get worried... two seizure triggers. I should just treat tomorrow like any other day. Just relax and enjoy the ride, because I know I'll do a good job, and I have little hope that I'll actually get the position. This sounds depressing, but it is actually helping me.

I get to try Uber for the first time which will be fun for when I need or want to go somewhere in the future. That's what I should be excited about. Plus, I get to have lunch with my friend and former boss, Joe, and talk about small things. I'm really more excited about that.

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Entry after interview:

Today had some trials that I wasn't expecting. I had a seizure at home while getting dressed and ready for the interview, and after the interview they popped a surprise design project in my lap for me to complete within an hour.

Obviously, I was worried about the seizure and having another one during the interview, and a little flustered and shaky about the quick design project that I wasn't expecting. I even called my friend and former boss, Joe, to tell him that I was worried, and he assured me that everything was going to be ok, and to just go with it. Everything turned out just fine. In fact, I feel like I thrived; an experience that I haven't had in a long time.

The interview went well from my perspective. All of the typical questions were asked, (what's your greatest strength/weakness type of things). I was nervous, but no more nervous than I've been in other interviews.

After the interview I was pumped. I called Sara right away because I knew she was concerned that the interview was running too long and that maybe I had a seizure and was sent to the hospital or something. Then I walked down the street to a pub where I used to frequent to have lunch with Joe to talk about how things went. I was in a great mood, and we ate an early dinner while making small talk. It was nice to reconnect with him.

No matter if I'm offered the position or not, I had a hell of a day that I'll never forget. It was the first step in proving to myself that I might someday get my life back on track and put epilepsy in the back of my mind... where it should be. Thinking about it too much has been making me crazy... in some cases, quite literally.

Thank you ALL for your continued support. I couldn't have even walked out the door today without knowing that you're all there for Sara and I.

Visual Seizure Diary

I recently re-discovered my fine art roots, which I haven't tapped into since my first year of art school. I've found it has been great therapy, and in that respect I've also been researching art therapy as a way to cope with some of the issues I deal with, epilepsy and otherwise.

I'm no great sketch artist, but I know these images are just for me, so there are no judgements or critique like there were in college. I've been watching some technique videos on YouTube, and watching a couple documentaries about Art Therapy. It's important to me to see and hear from others and how art has helped as coping strategy for them, whether it be visual art, writing, music, theater, etc.

So, while drawing I've been trying to come up with subjects, and I decided that I would like to draw something that meant a lot to me. Because my memory is so bad, and I usually don't remember my seizures, I often do have a still image in my brain of the last thing I saw before the lights went out and the seizure started. 

So... that's going to be my subject. A visual seizure diary. I'm going to draw the last image I remember from my seizures with a date of the drawing and a short description on the back of the image to reference in the future. I've completed two drawings already from major seizure memories from the last six months.

I probably won't draw every seizure because a lot of them I just don't remember, like there's no image in my head before the seizure began. But to have a visual record of a seizure could be, and had been so far, a great way to cope with some of the issues that have risen since being diagnosed with epilepsy.

I have a nice set of colored pencils, and I'll keep purchasing drawing pads as I fill them. Hopefully I won't need too many sketchbooks in the future, because that equals more seizures, but I know it's my reality, and if I can find a way to make something positive out of this horrible disorder, then I'm game.

Hell, maybe I'll become a better artist in the process.

Van Gogh

After a very horrifying EEG experience two weeks ago, then a near equal withdrawal experience last week coming off a couple of my medications, (I will get into this another time), today was the kind of day I needed to help me forget about that hell and get my life back to normal.

Today, Sara and I visited the Van Gogh exhibit at the Art Institute of Chicago. It was a gray, cold, and misty day, but I wasn't too worried about that. Just seeing his work up close really helped me get back in touch with my creative roots.

The museum was packed with people clambering to see the exhibit. We were all like cattle being herded into, what seemed like, a small exhibit space, but once we got close enough to see his brush strokes, my eyes lit up.

All week I've been doing some art therapy with a sketch pad and colored pencils. My drawings aren't really much to write home about, but to me, they've meant the world. I even find myself dreaming about my drawings, and waking up in the middle of the night to finish drawings that I had started the night before. No drug in the world could make my emotions come to the forefront of my psyche like they have this past week. That's why going to see Van Gogh's work, my favorite artist, that much more meaningful.

I even forced myself to pick up a camera again. If you know me, then you know photography runs deep in my blood. Maybe my first time out shooting around downtown Chicago in awhile won't yield the best shots, (I shoot mostly film, so I've yet to develop and view my work), but just to aim my camera, and press the shutter was enough to make my blood warm.

So, this past week, with all the shit going on in my life right now, to be creative for the first time in a long time was a pure joy. Something I know I'll look back on, and be proud.

Pride in myself. A feeling not felt fully since my first seizure.

Going Mad

It's hard to stay sane sitting in this hospital bed. No matter how many times I put on a smile and appear to speak the truth about how I feel, I'm really having a hard time. 

I've said this before, but it's clear. All my current life I try to avoid seizures, but there's nothing I can do to cox the beast out of it's cave.

The last time I had an EEG, I didn't have a seizure for days... no matter how many triggers that I tried. Then I had a seizure in the car on the way home from the hospital. I'm envisioning that for this stay as well.

One good thing that has come out of this hell is that the doctors got to see a psychotic event. It could be from the medication, stress, damage to my brain, or a million other things. Thankfully it wasn't violent like they have been in the past, but I could see a red dot in the distance. This red dot was quickly making its way to the forefront of my vision, but I was too drugged to give the red I was seeing any power.

While writing this early in the morning, I'm looking at a Van Gogh painting on my iPad to relax me. It's the same painting that I had hanging in my room as a teenager... "Cafe Terrace at Night". It was, what I thought, a peek into my future. Sitting abroad at a small restaurant, drinking a cool drink on a warm, clear night while people passed all around me. It's working ok, calming me.

I'm also listening to the Foo Fighters. An unlikely source that calms me. Ever since Sara and I went to their concert at Wrigley Field last summer, I hear one of their songs, and I'm whisked back to that misty night. Beautiful, just like Sara, who wrote that wonderful experience into my life.

I'm going to read a little about Van Gogh now that I have his work in front of me... even if it's digital. Maybe that'll help me pass the time this early, sleep deprived morning.

Personal Purple Day

I first heard of Purple Day for epilepsy awareness last year (2015). Basically, you wear purple to spread epilepsy awareness. It's huge on Twitter. My feed yesterday was full of epilepsy friends all wishing each other a seizure-free Purple Day.

Unfortunately, yesterday morning I had a pretty strong seizure, so I wasn't on social media for awhile to see all the love that was being spread around by patients, friends and family. In fact, I completely forgot to wear any purple. 

Well, yesterday, the day before Easter, we went out for pizza with Sara's family. Sara and I got out of the car to see that all of her family members were wearing purple. At first, I thought it was just a coincidence because I didn't think anyone else knew what Purple Day was except Sara and I. But, no... they wore purple to show support for epilepsy, more specifically, Sara and I. 

I sat pretty quiet during the dinner because I was still a little woozy from the morning seizure, in fact I wasn't 100% that I'd make it to the dinner. Instead, I fought through the pain to see her family, eat some good food, and have a few good laughs.

We did just that, and I'll never forget this year's Purple Day. Sara and I have been having one of the most difficult times in our lives... health, money, you name it. To see her family show support like they did yesterday made me fight back tears the whole night, even now it's getting me a little choked up.

This is what Purple Day is all about. Patients, friends and family all showing support for one another. It really is a beautiful thing.

So, this post is dedicated to the Arnas family. Thank you all so much for your kind gesture and show of support. It's exactly what I needed after yesterday's seizure. It might be as simple as putting on a piece of purple clothing, but to me, it meant the world. 

Tomorrow (Monday), I start another EEG at Northwestern, and I'll have a little less fear going into it because of this year's Purple Day. 

Joe, Terri, Erin, Elise, Grandma, Bob, Debbie, and Jessica... Thank you!

Dave Grohl - Times Like These

http://youtu.be/2w0JiLKQ3-o

Open Letter to My Seizures

I'm taking part in an epilepsy writing study and one of the assignments was to write an open letter to my seizures, and I thought I'd share it with you.

***

Dear seizures,

You've completely destroyed my life. Everything that was once looking up is now dead and buried. That's all I can say without getting too upset and risk having a seizure.

There is a good thing that has come out of this hell. I became more close to my family, especially my wife. My wife and I loved each other before my first seizure, but neither of us really knew how deep love can actually be.

After I had my first seizure, I no longer feared death. If fact, I thought that death was just around the corner. Years later my fear of death has returned.... Slowly. This is good news to me because it's a sign that I value life and want to get better, no matter how little the chances are.

There's no advice I could give myself after my first seizure because the medicine side effects make my emotions uncontrollable. I would forget the advice during one of my psychotic episodes caused by the meds. I only recently have been able to recognize when such an event is inevitable and put myself in a safe place. It's very similar to a seizure aura. 

I know I'm going to live with you for the rest of my life, but I know I can't let you control my life. This seems nearly impossible because you have such a tight grip on my psyche.

Basically, fuck you... and thank you.

Difficulty Saying Yes

If you know me well, you'd know that plans in my world are always tentative. No matter how important the occasion, I have to have an exit strategy, because I can feel great one moment, and the next, feel horrible. 

And I'm not just talking seizures. Yes, seizures definitely cancel plans, but I'm mostly talking about my mood. These medicines I take create severe ups and downs. Sara will attest that the switch from yes to no can happen within seconds. 

I can best describe the "switch" as a wave of emotion enveloping every part of my body. It starts out as a simple tickle in my chest that quickly turns to the grinding gears feeling that I've wrote about in previous posts. 

I find myself pacing the apartment, and I have the insatiable feeling that I want to hit something with my hand, thinking that it'll stop the extreme anxiety. I've done this several times, not clear minded, and have broke bones and bloodied my hands.

This feeling scares me so much that I often cancel plans preemptively. I think Sara has come to expect that every plan we make, no matter how important, like a wedding, all the way down to weekly errands like grocery shopping, etc.

What I'd like to do is stand up to this "no" feeling and start filling my life with a more optimistic outlook on my everyday life. I tried this years ago, and I was pretty successful at it, but since that summer I've all but given up. 

The thing about saying yes to events happening in my life is it is extremely rewarding in a lot of cases. Yesterday was an example. I said yes most of the day and felt very proud that I was able to get out of the house and walk around the mall, followed by a sit-down lunch, then stayed awake to watch a movie with Sara, then go on a quick grocery shopping trip way later than I've been out in weeks.

But yesterday I did know my limits. After shopping for a couple hours at the mall and lunch, I had Sara drop me off at home for a nap so she could finish the shopping that she wanted to do. After the nap, I still felt great, but as I said before, my state of mind could change in seconds. I pushed through the fear and ended up having a great day, (although I was constantly asking Sara to tell me that I was doing a good job fighting the feeling to say no to our plans, no matter how simple they were). 

My point is that I'm going to try to say "yes" more in my life. I feel like if I do this enough, maybe the fear of something going horribly wrong will subside. 

Don't get me wrong, I could feel great all day and say "yes" to everything all day, and still have plans struck down. This happened two weeks ago. I came up with the idea of taking a walk in the nice weather and ended up having a pretty bad seizure while on the walk. I can't stop myself from thinking what would've happened if I was on that walk alone. 

So, starting with this post, I'm going to make a conscious effort to say "yes" to the events flouting around me.

Wish me luck.

***

An example of the emotional switch I'm talking about happened while writing this post. I'm listening to music on my headphones and a song that really means a lot to me started playing and I had to say "yes," and push through and finish writing.

Epilepsy Tech & Innovation

This post is part of the Epilepsy Blog Relay™, which will run from March 1 through March 31.Follow along and add comments to posts that inspire you!

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My topic for the blog relay is epilepsy technology and innovation, and as a VNS patient I'd like to give you a little update as to how the VNS has worked out for me after five and a half years of treatment.

The first thing I would like to point out is that the VNS hasn't stopped or really lessened the amount of seizures that I've experienced, but I would say it's been a success because I feel like it lessens the intensity of the seizure and helps with recovery time after a seizure.

As of right now, my battery is at about 2/3 capacity... much more than I would've initially expected. I think I was told that I'd need to change the VNS battery every 5-8 years, but it looks like my battery will last a lot longer than that, which I'm grateful for.

My wife and I attended an epilepsy conference in Chicago, and there were many options for someone who's seizures are not well controlled with medication alone. We just glanced over the booths to see things like the deep brain stimulator, etc., so I can only speak for the VNS because it's really a part of my everyday life.

My VNS is on for seven seconds and off for ten by itself, without swiping the magnet over the device to double the "dosage," which then keeps the device on for one minute. 

When the VNS is on, I feel a pulsing tickle in my throat. I've gotten used to it now, but there are some other side effects. 

The one side effect that has most impacted my life is that I now have to wear a sleep apnea mask. I may have been just on the verge of needing one before having the VNS installed, but now it's a necessity. It's a pain to have to use a cpap, but I've found that I do sleep much better.

I wouldn't hesitate once about having this VNS surgery... with the battery changing surgery and all. I've heard that the new batteries last longer and soon my doctor will be able to log on to my VNS while I'm at home to see it's status and make changes if needed.

If you're considering the surgery and would like to know a little more about my experience with the device you can leave a comment below and we can talk privately.

Thanks!

•••

NEXT UP: Be sure to check out www.cf-epilepsy.com for more on Epilepsy Awareness.

When You See Her, Kiss Her

Monday was spent at Northwestern Memorial Hospital again. This time to see my neurologist. The appointment went ok. We scheduled another EEG for April. They're not fun, but can yield a lot of good information for my doctors.

To get to the hospital, I usually ride with Sara to the city and stay at my sister's apartment, which is just a few blocks from the hospital, but she was unavailable, so I took the Metra train which is about a mile from my apartment. Side note: yesterday was a nice sunny day for walking, but damn I'm out of shape! I thought I was going to die when I finally reached the station. Once on the train, I was able to relax.

The plan was I would take the train to the city, and I would hang out there for an hour before Sara left work early to pick me up from the station and drive us to the hospital. Ogilvie is a huge station with a nice food court for me to just sit and relax. So that's what I did. I bought a bottled soda, and a snack to hold me over until after the appointment when Sara and I would have time to eat a late lunch.

Once I had my snack and soda in my hand I found a two seat table where I could just play on my phone for an hour while I waited for Sara to pick me up.

The station was very busy, so I wasn't surprised when a police officer sat at my table during his break to eat his lunch. I mostly ignored him because, to be frank, I was a little uncomfortable sitting with a stranger, but I guess that's the way things are done down there.

Once he was done eating, we started talking. And let me tell you, Mike the police officer really likes to talk! So that's what we did. Mike talked about his day, what it's like to be a police officer (his duties at the station), and just life in general.

Of course, we stumbled into the topic as to why I was visiting Chicago yesterday. I told him a very watered down version as to why I was there, and that I have epilepsy, and was there to see the doctor. I told him about my seizures a bit, and then we got on the topic of Sara picking me up from the station to take me to the hospital, so we could be in the appointment together.

Mike gave me a lot of good advice. He was an older police officer with a lot of advice to offer. He reminded me of my dad, who is a retired cop. We started talking about Sara, and he looked at me as seriously as a cop could look at someone and said, "you know she loves you very much." I agreed.

Mike has seen a seizure before and said it was one of the scariest things he's seen as a cop, (that's saying a lot!), and that for Sara to have stuck by my side, fighting epilepsy, was a true test of her love for me. Again, I agreed and told him that, although I've never seen a seizure, I've been told that they are very scary. He even knew what an aura, (seizure warning), was. Pretty amazing, if you ask me.

He gave me some instructions for when Sara picked me up at the train station. He said that when I get in the car, I should look at her, tell her how much she means to me, and to give her a kiss on the cheek. He said it's not about getting the chores done,  (how did he know that I was struggling with that?!), or how much money I make, etc., it's just about letting her know that I appreciate her and love her the same way she loves me. 

So that's what I did. Once in the car on our way to the hospital, I told her about my encounter with Mike, and once we reached the hospital and got out of the car, I kissed Sara in the cheek and told her how much she means to me. 

This post is basically to thank Mike the police officer, and reiterate to Sara that she means the world to me and I wouldn't have the strength to fight epilepsy, and all the shit that comes attached to my seizures without her.

So, thanks to Mike, and most importantly, thanks to Sara for taking a half day of work off so she could fight traffic to pick me up from the train station, then sit in another doctors appointment.

I love you, Sara, and I'd probably be living under a bridge somewhere without you!

The rest of the day went good, I was in a great mood, we ate a good lunch in the city, and headed home. I'm only up so early to write this because as soon as I left the train station, I was itching to write about my experience with Mike. 

What a great day.

(10,000 views on my blog! Thanks to all of you who have supported me!)

Rusty Gears

Every morning around 10am I get this funny tickle in my chest and stomach. I always describe it as rusty gears in my chest struggling to turn. This could be a couple obvious things. One could be that my body is craving medication, and this is usually the time when I take them. But the gears feeling sometimes comes without warning and not during the window of time where I'd be taking my meds.

This is not a conclusion, but one thing I always think about during this time is going to work. 

Nearly everyday I watch Sara get ready for work and we talk about whatever is on the news that morning... weather, traffic for her commute, or just headlines of the day. We used to do the same thing when I was still working, only I was obviously getting ready to go to work, too.

I usually try to relax myself as much as I can. I fill my head with positive thoughts by watching relaxing YouTube videos or playing records. TV sometimes helps, as well.

Could it be that these gears are my body telling me that it's not natural for me to be as complacent as I have been? Could watching Sara in her daily routine spark something inside of me that really wants to go with her; a feeling not too far from jealousy?

Whatever or wherever this feeling is coming from, it's been happening for years by my count. I usually just take my meds like always and slowly wait for it to pass. But I will admit that the passing of this feeling after I take my medication could just be me getting very tired from the meds, and the gears are just masked by tiredness.

Where ever these feelings come from, they are very annoying and some days strong enough to outlast any attempts to block it. Then what do I do? 

That's the big question for all of my doctors. That's really the only place where I can voice this problem and receive an answer. So far they haven't been good answers because despite trying to go on more medication, the gear keep spinning, and they will, I believe, until I find somewhere to put myself that isn't within these four walls.

Guilt

Lately I've been feeling this tremendous guilt feeling. It starts as a tickle in my chest, which I describe as rusty gears turning in my chest. After that I feel a wave of depression and what I can only describe as guilt... It seems to be the only adjective I can use to describe it to Sara and my doctors.

If I leave the feeling alone and just let it play out, it only gets stronger and stronger. Soon I find myself actively trying to find things in my life, even years ago, to feel guilty about. If I let it go far enough, it lands on August of 2008... The time when I had my first seizure.

I now notice this feeling right when it begins, and we've (Sara, my doctors and I) come to determine that my blood sugar is too low. Like I didn't eat enough when I take my meds.

So far, eating while taking an emergency medication meant to help me after a seizure kills the feeling right away. 

I'm writing this now mostly for myself because I'm the only one right now who can notice it starting to happen. It's only after Sara asks if I'm ok, or how I'm feeling do I divulge this information.

This is just another example of how strong these medications in my body can be. They trick me into thinking dark thoughts, like extreme guilt. 

Isn't there an epilepsy drug out there that can stop seizures while making me feel good inside? Instead, I have to take extra medications to bring me back to normal.

I was watching tv with Sara tonight. A very depressing documentary series, and now I'm wide awake thinking about it. I know I'll just lay in bed staring at the ceiling for hours thinking and feeling too much to sleep. 

I took my evening meds, and just took an emergency med to help me relax and hopefully fall asleep comfortably and without my mind racing.

They're kicking in now. My body feels heavy and I'm starting to to feel very tired. This is a good thing. Hopefully someday I won't have to feel this way anymore, but for now I'm having to combat strong seizure meds with very strong psych drugs. It's something I wouldn't wish on on anyone because it's absolute hell.

Milwaukee Holiday

2015 went out like a lamb. When I say that, I mean my mood was extraordinary! There were some seizures peppered in there, but my mood had been most important to me lately. It always should be, really.

We spent Christmas in Milwaukee visiting Sara's family, and New Years at home with a homemade lasagna! Sara and I both agree that our time closing out 2015 couldn't have been better. We got to spend some quality time together, and we didn't get sick of each other once! :)

We spent Christmas at her uncles empty condo, (he spends the winter in Arizona), and so that meant Sara could make cookies, and I felt free to get up and watch tv or read whenever I wanted. I haven't been sleeping too good, so that was a bonus.

Our Christmas' went well. We gave and received great gifts, and everything went pretty smoothly. No drinking for me, which we now know is key to my mood stability. I should've known this years ago, and probably did, but ignored it for some time.

The new year saw some seizures, but again, my mood stayed stable, and I was able to make it to 11pm to watch the ball drop in NYC, before heading off to bed. I seriously couldn't stay awake one minute longer! Sara's lasagna was delicious, as always, and so far 2016 has been ok.

I found a new supplement called melatonin that has helped my sleep, but I still have some work to do in that department. Hopefully nothing too strenuous. I really don't mind having to get up for a couple of hours in the middle of the night. It's quiet, and in some ways relaxing. I just know I need the sleep to help with seizure activity.

So, so far, 2016 has been in like a lamb, as well. Let's just hope this year is a year of change for the better, and a path to a better, simpler life is laid out before us.

Happy new year to all of you!