It's Been Awhile

I'm back, sitting at my desk, literally wiping dust off the keyboard. I haven't written since January; right before I took my trip back to Mayo Clinic to see if they could provide us with any answers, advice, or pat on the back. Short answer: No.

I've written post after post about my experience with Mayo, but I'm choosing to skip over our last trip. Not because something happened that I'm withholding, but rather, the opposite. They offered us a path, and we took it. I knew that there was going to be some work to be done on my part. 

In the fall of 2012, I was put into another EEG. The doctors boldly took me off of all of my medications, so they could get a good look at what my seizures looked like. I was admitted a week from Thanksgiving of that year, thinking that I would definitely be out by the time the holiday rolled around. I was wrong, and I spent the holiday in the the hospital having seizures. I remember the first one only because I looked up from the bed to see my Dad, with his coffee cup shaking in his hand. (I was told that there were nurses crying in the hallway after one seizure in particular. That will always stick with me). 

I had seizure after seizure until my tongue was so bit up, bloodied, and swollen that it was hard to talk. Even weeks later, I was rubbing the same solution that you would drop on a toothache on my tongue because it hurt so bad to eat, drink, and talk... even sleep.

***Just had a seizure, taking a break***

Once given a proper diagnosis from Mayo, I was put on a steroid treatment in spring of 2013. A nurse would come to my house once a week and administer an IV steroid treatment. What I experienced was what I HAD to expect. The nurses, while nice, all took several sticks (2 to 5) to find a proper vein, and when they did, I bled all over my kitchen floor until they inserted the IV. So much blood everywhere, I remember.

The steroid treatment didn't work when it came to reducing the number and severity of my seizures, so the doctors decided that the next step would be IVIG. I can't quite explain what this is, but I would go to NW once a week and it worked similar to the steroid treatment. This started in the fall of 2013. 

The nurses were better, in the they found veins more efficiently. I was told at Mayo in a very casual manner that there was a potential risk of me developing Meningitis as a side effect of the treatment. Guess what happened? I woke up one night after an IVIG treatment with a headache so severe that I thought there was no way that I could make it to NW. Sara did her best and got me down the ER at NW.

There I received a spinal tap (now my forth in five years) and not nearly enough drugs to ease the headache. The spinal fluid was tested and I was deemed a threat to the other patients and doctors, so I was put in isolation. I sat there until a proper isolated room was available upstairs in the Neurology department. 

I was moved after hours waiting with Sara and my two sisters. They all really went to bat for me that day. I was put on antiviral, antibacterial, and some other "anti" medications for a couple days while in isolation before I was deemed non-infectious. Although the headache was still there, I was allowed to go home. The next week, I started back up with the IVIG treatments, with full knowledge of what they can do.

After still having seizures, nothing seemed to be helping and so the treatments were stopped early; just before Christmas. Then after the holidays we ventured back up the Mayo for more tests only to be told that they tried what they could, and it might be best to work with my doctors at home, especially with my therapist and psychiatrist, (I let them in on some of the darker side effects these medications seem to have.)

This is a lot to take in, and I know it's sounds a bit like self-lothing, but this is what I go through when I have my therapy sessions. I discuss all the gory details out-loud with the hope that I can make some semblance of what this all means. All of it. 

What does it all mean? 

Why is this happening? 

What can I do to better my life and those lives around me? 

What kind of quality of life is this?

All Press is Good Press

I'm trying very hard to connect with old friends. I've spent my whole night Facebook friending old acquaintances from high school fifteen years ago, college friends from ten years ago, or new friends that have developed the last couple of years. What I'm trying to do is paint with a broader brush when it comes to my writing, when it comes to my Epilepsy and awareness.

I'm trying to share my story with as many people as possible. I'm sure that most of you are trying to do the same. A persons story is very, well, personal, but what I'd like to do is bring my illness to the forefront.

I want this blog to be a soapbox on which to stand and shout the thoughts running through my brain. It's easy to communicate these emotions to a loved one (slightly), but it's completely different to expel these feelings to the sudo-public.

I want this blog to be known, I want it to be shared, talked about, discussed, and gossiped about. All my press is good press.

Monday Morning Status

Last night while watching television with Sara, I walked into the kitchen and felt as though I was in a dream. Of course, I knew what was happening, and to be honest, I knew it was coming all day. I felt the little "ticks" where I lose the split second of time that I always talk about.

Once I reached the kitchen table, I sat down and waited for the seizure to wash over me. I felt my eyes getting dim, as Sara grabbed the VNS magnet from my right hand that was becoming numb. She swiped it over my chest several time to activate the device.

That's all I remember, and in fact, when I woke up this morning I thought it had been all a dream. I called Sara on her lunch break to ask her what happened... "Did I have a seizure last night?" She said that I head tilted to the right, my right arm started to stiffen, and I was babbling incoherent words.

Now I can expect as least two more seizures within the next couple of days; that's how my seizures work, they come in three's. The first one rocks my world and the next couple usually knock me out of the bad mood that usually comes with the first seizure.

That's the thing though... I feel great. I did start the new antidepressant, Geodon a couple weeks ago. Maybe it's doing it's job better than Abilify.

All I can say today is that I'm happy I thought it was all a dream when I woke up because the knowledge that I had a bad seizure does depress me. I just think to myself that I was doing so good, and just maybe this is the start of a long streak of being seizure-free. Not today, I feel strong, even with the knowledge that I'll probably have a bad week. What I'm going to do is be conscious of my health, drink some tea, and watch a movie that makes my laugh out loud.

The Circle of Struggle

I'd like to write a post that leans toward the positive aspects of my life. I've been thinking a lot about writing, and reading the posts I've been working on. It's come to light that my depression, and anxiety make their way through my hands, and I seem to type words that aren't necessarily inspirational.

I've been thinking a lot about me as an adult living with a disability. What can I do inspire people instead of reflect the horrors of someone who has to live everyday with the fear of having a seizure?

I probably will never be any kind of motivational speaker, but what I can do is write a post that helps my readers better understand what it's like to smile even on days where there should be no reason to smile.

I love to laugh; I live to laugh. Even watching movies that are considered dramas tend to negate my attention. Anyone who knows me will tell you that rarely do I show signs of the struggle that's going on inside. Maybe that's why it's very important for me to write about these struggles.

Everyone has some kind of struggle going on inside them. Whether it be money, relationships, work, etc., people need to be able to properly expel these emotions in a proper way. It took me a long time after contracting Epilepsy to start this blog, and start seeing a therapist. The blog was my idea, but I started therapy with the help of my wife and family.

I'm not saying that everyone needs a therapist, but everyone needs some sort of outlet that is unrelated to those who are sharing your struggle, like a spouse for instance. It's hard for me to talk to Sara or my family about my emotional problems because I know that they feel similar feelings, and are writing the same exact story.

My Mom, my Dad, my wife, my extended family, and my friends have all seen what it's like for me to sit in the hospital. They've seen my seizures, they've seen me cut myself, they've seen me descend from a man, to a patient. I've scared the shit out of them; they know the layout of every single hospital, and have sat in hospital rooms just as long as me. They have fought for me, argued with doctors, nurses and even the police for my well-being. They need an outlet for their frustration just as much as me.

All I can say now is that if a person finds themselves fighting for their life, there are dozens, hell, maybe even hundreds of people that share their struggle.

***

A lot of my posts are geared toward communication to my friends and family. It's hard for me to communicate verbally how I feel, and so I write in order to let them know what's going on in my head.

The number one rule for this blog is I'm allowed to have complete creative control with no restrictions. I can write about anything I want without judgement; this has helped me greatly. I always write when I'm alone, either Sara is sleeping, off to work, or otherwise out. I find that this gives me the opportunity to really think about my posts; this is also true for the other creative aspects of my life. I've found it easier, and I'm more creatively productive when I don't have anyone "watching over my shoulder."

There have been a couple of design jobs that I've had, where I didn't have my own office or other isolated workspace. I felt like I couldn't stretch out and really be myself, I would long for the days where I was able to work late and have the office to myself, or be surrounded with people that had the same creative habits. By that, I mean they couldn't properly make good work with a crowded workspace.

Even as a photojournalist, being surrounded by hundreds of people at events and such, I was able to weave in and out of people somewhat anonmously. I worked in a way where I knew no one was watching me; that's also the way I knew I would get the best shots.

Having time alone is essential. Being able to but a period at the end of a sentence that is completely my own is the only way to truly thrive as an artist.

Finally Digital

For years now, I've been shooting digital photographs professionally, but for my personal work I've always leaned toward 35mm film. I just love the way a film camera feels in my hand and how the grain of the film looks either printed or viewed on-screen. Although I've been shooting film, I always use a film scanner so I could share them digitally or print them for framing purposes.

While working as a designer, I was also the in-house studio photographer for product and application shots. I absolutely loved the days where I knew I was walking into work for a day of photography over design. Don't get me wrong, I love design, but photography flows through my blood more than any other vocation.

I soon became a photojournalist with the help of a friend to get me into the freelance photography business. I would design and shoot digital studio photography on weekdays and shoot for the Sun Times News Group in Chicago on nights and weekends with the inclination that my career would allow me to shoot for the paper full-time.

After contracting Epilepsy, I continued my design and digital studio photography career, but personal photos became non-existant. I just couldn't get my mind to be creative in photography anymore. I'm not sure if it was not being able to drive or the cost of film products, I just couldn't bare to load the camera with film and get out to shoot.

Recently, I received a new digital camera as a gift. It's very nice, and rivals the photo quality that I would get out of a scanned 35mm photograph. It's a rangefinder-style camera (the lens and viewfinder are separated), and when I look through the lens, I feel the same feeling as I did when I looked through a film camera. I look at my new camera I think about all of the memories I'm going to capture, and all of the art I'm going to make.

Bailey

Earlier today, my sister called me with news that the family dog, Bailey, may have had a stroke. She's apparently not seeing very well, her head is cocked to one side and she's not responding when my parents try to call her.

My sister was a wreck on the phone; she recently moved to Chcicago from Beloit, WI, and she felt very helpless. I can't blame her, having a sick animal that we all considered close family is tough for anyone.

Sara and I recently had to put down our first cat named Fiona. I wrote a post about this time. She had a brain disorder, so, in the end, she was a shell of herself. I wrote about how we had this in common. Basically, if I were the family pet, having uncontrollable seizures, I'd be put down, too. This sounds kind of dramatic, but this was a very tough time for me emotionally, being on a bad mix of medications, so seeing her this way just brought all of these thoughts to life.

Bailey is a good dog; my parents have had for over a decade, a long time in dog years. When I think about her life, I think about how she has been around for every event in my adult life; college, meeting Sara, being diagnosed with Epilepsy. I can remember her being there for me when I was visiting my parents, and her just knowing when I was "down," and offering her love to me by crawling into my bed and laying next to me. She just knew I was hurting somehow, and she wasn't happy when I wasn't healthy.

My Mom didn't want to tell me that she was sick tonight, but my sister called me with the news anyway. My Mom was trying to protect me so I wouldn't fall into a depression over her. I held it together pretty well, as I knew this day would come very soon given her age. Sara called both my Dad and my sister Jenni to talk to them and offer an ear. I think that helped. She's always good like that; I appreciate her love for my family, and how much they mean to me.

I can feel pain, but because I'm currently on two antidepressants, the news of Bailey being sick didn't cause me to cry. I will though. When it come to the point when Dad has to put her down, I will think about the good times and the bad times I had with her, and lose control of my emotions in a healthy way.

***

I'm up late again. I'm actually enjoying the time I have alone in our dark apartment. I'm enjoying it because I know Sara is safe at home, and I've been seizure-free all day, with no indications that an episode could be coming.

I met a new friend on Twitter a few days ago; she's also living in Chicago, which is nice because a lot of my followers are a distance away. She can relate to the city, and we can talk about the hospitals, although different hospitals, where we are receiving treatment for Epilepsy. She has posted similar photos as me when I was admitted (several times) for an EEG and other various reasons. That was helpful somehow.

She works at a news organization based here, so now when I'm writing, I pay special attention to my grammar which, I will admit, I'm pretty self-conscious about! Not that I'm crazy about my skills as a writer, but because I'm not a trained writer, and I write as if I'm having a verbal conversation. I wish I could have a better understanding of the written word.

She wrote about "coming out" as a person with Epilepsy to her co-workers in one of her pieces, which takes a lot of strength in my mind. I've had negative reactions when telling people I once worked with about having Epilepsy. No one quite understands what exactly comes with the territory. People hear the word Epilepsy, and the think of weakness as an employee, or being fragile in some way. This can be true, I admit, but we are still human beings.

The firm I worked for when I had my first seizure couldn't have been more tolerant of my disability. My boss, at the time, was instrumental in me receiving treatment. He knew what to do when I had a seizure at work, knew who to call in case of an emergency, and knew that I bad days, I couldn't be myself as an employee. I long for those times.

***

I'm a bit worried about the next couple of days because the weather here has been so cold. I usually have problems in extreme, and changing weather patterns. All I can do is think good thoughts, believe that those around me love me, and will do anything to see me be the man that I am, instead of a man trapped in a world of Epileptic uncertainty.

Geodon

Sara and I went to see my psychiatrist this week, and I'm now weening myself off of Abilify. The doctor prescribed Geodon, which is supposed to have less "weight" issues, and since Thursday, I've noticed that a lot of my psychological side effects of my seizure medication has subsided. Thankfully.

I had four seizures this week, the most recent being on Saturday afternoon. Sara was in Milwaukee visiting a friend, and when I called her, the first sentence out of her mouth was, "Are you the good Jeremy, still?"

Since last Sunday's very strong seizure, I was waiting for the other seizures to come so they would knock me back into my "good" state. They came... three times! I've never been so excited to have a seizure since I knew I'd have less of the anger and anxiety issues that I was having while in the interictal state.

After some research, I've found that Geodon causes severe sleepiness, or somnolence, as they call it. I've been taking it in the mornings and have noticed that I start to feel light and a bit euphoric, then I want to sleep. And when this sleep comes, it comes with a vengeance! I slept nearly all day on Saturday, and now I'm writing this in the wee hours of Sunday morning.

I'm going to slowly switch the intake time to the late evenings, so I just took the Geodon and half of Abilify. Right now, I can feel my hands getting light and it's getting easier for me to type, as I have less and less "noise" running around in my head.

Right now everything is clear, and I feel a sort of stoned clarity.