Saturday, December 19, 2015

To My Mom

Mom, let me first start this post by telling you that I love you. You've seen the absolute worst of me and the absolute best of me. I'm your son, your first born child, and I want you to know that I haven't, and will never forget that.

When I first started having seizures, it must've been unbearable to watch one of your children go through so much pain. Pain, unfortunately, I still feel to this day. The seizures haven't stopped and neither has your strength of mind in knowing that someday this thing will be beaten.

I watch Avery, your first grandchild, my niece, and I think about how I was once that small; needing your constant attention and love. You showered my with both. I had a great childhood, and I think your daughters would also agree.

To see little Avery as myself, and to foresee the path I would have to walk as a person living with epilepsy... it's a thought too difficult to grasp. Especially as a parent, I'm sure.

Our relationship is strained, I know. The last couple years have been hard, but you're my Mom. The only Mom I want or will ever have. We both have our tremendous flaws, as all people do, but I hope that in the coming months, and days like today, we can move forward and focus on the very best of what we see in each other.

I'll do a better job letting you know how my weeks are going; seizures, doctor appointments, or just the general stress of living the life I lead. I know you'll offer me love, support, and advice... all things that a child looks for in a parent. 

I love you, Mom. Merry Christmas.

Sunday, December 6, 2015

Getting Out

It's late on a Sunday night. I just finished the final chapter of a book I've been reading and I thought I'd write a little about today.

Being a Sunday, Sara and I usually have some time together which has been a rare thing because during the week, she gets home and there are usually only a couple of hours where we see each other before I have to take my medicine, which makes me very tired, and I go to bed relatively early. 

It has been, as a personality trait, hard to get me out of the house to do anything that isn't related to errands or doctor appointments, but Sara tries hard to get me out of the house, even for a couple of hours, to do fun things.

I usually complain that I'd rather just stay home with her or do something routine like go to a mall and walk around, but she likes to try new things, which can drive me bananas because I've been so stubborn lately. Lately being the last couple of years.

Today she wanted to go to an craft fair at the Chicago Irish American Heritage Center close to the city. After a lot of complaining, I finally got in the car and we went.

As soon as we got there I had a little seizure. By little, I mean it felt like I was having an aura that never fully turned into a seizure. I used my VNS magnet and continued shopping and looking around the booths and talking to people. 

Slowly, I started to have a good time, and became very excited about being there, and have gotten out of my comfort zone for a couple of hours. This, as we've discovered over and over, is usually the case. I complain like hell at first, but after it's all said and done, I'm very happy to have had the experience. I don't know why I'm like this.

This might not be a particularly deep and emotional post, but more of a written thank you to Sara for putting up with my shit at first, knowing full well that I'm going to have a good time even though I've fully convinced myself before even stepping foot out of the house that I'm going to hate every second.

So, thank you to my darling wife for being as stubborn about getting me out of the house as I am about staying in the house. Without you, I would've seen all the amazing things I saw today and talked with some very interesting people... especially the guy who gave us a very heartfelt personal tour of the Chicago Irish American Heritage Center's museum... He was so overcome with emotion about talking about certain items that he shed some tears. Whoa.

Again, I know I can be a stubborn SOB, but I can also be very grateful. I have you, Sara, to thank for that. I love you...

Monday, November 30, 2015

Thanksgiving

Even though the Christmas season has officially begun, I wanted to take a moment to look back on this past thanksgiving holiday, and how well it went. We ate great food, and were surrounded by great people.

First was the Smith thanksgiving from Wednesday night until Friday. Sara, my sister Jenni and I drove up from Chicago to Beloit, Wisconsin, my hometown, to meet my sister Julie, her husband Ryan, and their new baby Avery. We were then joined by my Mom and Dad. The food was amazing, and we laughed and and shared memories and made new memories to be shared in the future. We had Avery there, a new member of our family, to giggle with and experience what it was like to have a new seat at the table. She was adorable. I even held her, although I was scared as hell!

Sara and Jenni did a little shopping that night while I stayed at the house to rest. Apparently they got some great deals, which is always fun.

We left Friday morning so we could go home and take care of our cats for one night before Sara and I headed to Milwaukee to attend her family's thanksgiving. 

Once in Milwaukee on Saturday afternoon, we again ate great food and shared stories and played games. We stayed at her uncle's empty apartment as they spend their thanksgiving in Arizona.

Once Sunday came around it was time to come home, but first Sara and I had breakfast out at one of the local diners to spend some "us" time together. It was fun.

The best news.... No seizures! I was very nervous that the weekend would be ruined because I had been having a bad couple of weeks leading up to the holiday, but my doctor had me on extra medication to curb and potential problems. The meds made me a little sleepy, but everyone was ok with me excusing myself to rest when I felt too tired.

I wanted to share that this was the first thanksgiving holiday in three years where I wasn't sick. In 2012, I spent my thanksgiving in a hospital bed at Mayo Clinic for an EEG. In 2013, I had a horrible ear infection, and in 2014, I broke my ankle and was in a cast. This year, all there was to report was me being a little tired.

I wanted to tell my readers that I'm thankful for you, and appreciate all of the support and positive feedback that I've received. It's nice to know that I have so many great people on my side. I wouldn't be the same person without you!

Now, bring on Christmas!

Thursday, November 19, 2015

New Outlets of Support

This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!

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New Outlets of Support

I've been volunteering with the Epilepsy Foundation of Greater Chicago and attending many of their events, and I've been overwhelmed with joy at how much support other epilepsy patients offer each other. Not just the patients, either. Their families, friends, co-workers, the list goes on.

I've also, as many of you know, have met so many great people through social media sites like Twitter. Epilepsy patients and their families and friends all come together to ask questions about everything from medications, seizure experiences, work related issues... just everything across the board. And you'll get responses, too. I was just talking to a man who was recently diagnosed with epilepsy and he had so many questions for me that I was more than happy to answer because I know how I felt when I was in his position. I only wish I would've taken to Twitter for support as quickly as he had. Kudos to him.

The point here is, as an epilepsy patient, you have to have a solid support system in place for you to get through these tough days, and we no longer have to look just within our circle of family and friends (although I believe this is essential), we have so many new outlets for support. I have the Epilepsy Foundation of Greater Chicago, Facebook, Twitter, and the contact info from the people I meet while volunteering to start an email chain of support.

Let's all stick together. Epilepsy is a long, winding, and rocky road. Why not have others there to cheer us on throughout this journey?

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NEXT UP: Be sure to check out NEXT POST for more on Epilepsy Awareness.

Wednesday, October 28, 2015

She Landed

Well, the day has finally arrived. My good friend Jacqui from the UK is back in town for a visit and I'm gearing up for a great week. We have some loose plans, but I'm mostly excited that I'll be able to talk to her face-to-face instead of through text and FaceTime.

We've been friends for about a year now. She first reached out to me through Twitter to ask about the VNS, as she was considering the surgery. It turns out it's not an option for her, but we kept emailing, texting and talking via FaceTime.

We quickly realized that our lives strangely coincided when it came to epilepsy, then our friendship grew to the point where we found out that we were similar it many more ways. Our personalities really did mesh well together. We hold nothing back about our lives. There really are no secrets... It's like she's my sibling, only 4,000 miles away. Truly a strange thing considering we come from pretty different backgrounds, and cultures.

We talk about everything. Epilepsy, family, work and the lack thereof, language, culture, food, and tea vs. coffee. The list goes on and on. I'm still baffled as to how our friendship grew so quickly. Now we do not have a day where we don't shoot each other at least one message to each other each day. I look forward to it everyday, and I will admit that now my day wouldn't feel right if I didn't talk to her.

Sara, and everyone else in my life knows about her and our closeness. They too are so happy that I have her in my life. Not just because we support each other epilepsy-wise, but also that I have a best friend, even though she's so far away. 

This is the second time in under a year, months actually, that she's been able to make the trip to Chicago. I know I'll be able to visit London someday soon, but I'm so happy that she's had the time and resources to visit Sara and I. 

This week we're going to walk the city. Talk, shop, visit museums and eat. I'm sure there will be a lot of laughing and crying, both of which I'm looking forward to.

I know that you're reading this Jacqui, and I want you to know... I want everyone else reading this to know that you've changed my outlook on not only epilepsy, but life itself. I thank you for that. This week is going to be great. A great week with a great friend. xx

Tuesday, October 20, 2015

I See You Complaining

Like a lot of people these days we spend a good amount of time online checking status updates, tweets, eBay listings, shopping, the list goes on. 

By now you probably all know that I have quite a bit of time on my hands with being on disability, so I probably spend a little more time on Facebook and Twitter than the average person. It's a nice way to stay in touch while being surrounded by these four walls.

I see a lot of positive posts, articles, funny videos, etc, but I also see your complaints. Yes, parking in the city in a bitch, coffee is way too expensive, your trash didn't get picked up on the right day, dating has become impossible for anyone over 30, the list goes on.

What I really want to see more of is people posting things that they're thankful for. Your kid is doing good in school, you found a twenty in a coat that you haven't worn in months, my cancer is in remission, I haven't had a seizure in X amount of days or, damn you look good in those shoes! Big or small, positivity matters.

I'm posting this now because my battle with Epilepsy has been a complete disaster. Meds don't work, but the ones that do cause so many negative side effects that I find myself at a crossroad... seizures or constantly thinking of harming myself. Which would you chose? That's what I thought. 

I chose the harm myself road a few times, and at least with a seizure you're knocked out and you don't feel anything until you wake up, and that is usually a headache or bit tongue.

My point is this: If people like me have to come to crossroads like these, then surely you can come to your own crossroad and decide to spread some positivity to those around you instead of gathering all the meaningless negativity that happened to you throughout your day and sharing it for the world to see, and most likely...... ignore, unfollow, and unfriend.

Stepping off the soapbox now.

Monday, October 12, 2015

Klonopin

After a couple weeks of strong seizures while still recovering from shoulder surgery, my doctors thought it would be a good idea to put me on a low dose of Klonopin for an extended period instead of a higher dose which they were using just to break the seizure streaks I've been having as my seizures tend to group for days at a time. 

I also started an antidepressant called Lexapro on a daily basis. All of these new medications seem to be working as I'm in a good mood while I haven't had any signs of a seizure in just about a week, which is about as long as I've been taking the low dose of Klonopin. A week doesn't sound like a long time, but with epilepsy you tend to feel when you're primed to have a seizure. Bad mood, body twitches, headaches, anxiety, depression... They all are signs that a seizure is inevitable.

For the last week I've been waking up in the morning with a strong anxious feeling, but once I take my morning dose of medication it all goes away in minutes. I've been looking for this combination of medicine for months, maybe even years. There are very little side effects so far. In the morning I'm awake and happy, and at night I'm ready to sleep and for the most part, sleeping through the night.

I needed this for my arm. I've been very worried that the seizures could hinder it's healing process. After the few seizures I've been having I could tell that if I didn't have the sling on, my arm would extend and stiffen (which is normal during a seizure), and it has stopped it from moving out of place.

This comes with perfect timing as I get the sling off next week. My arm is feeling stronger everyday and I find myself moving it in ways that I haven't been able to without pain even a couple weeks ago. Right now things are looking good. A statement I haven't made in months.

Monday, September 28, 2015

Finally, Work

After two years being stuck behind four walls, I think I'm ready to finally re-enter the workforce. My arms will be both back to new and hopefully my spirits will be too.

Obviously, there are going to be disappointments. Maybe two or three jobs that I go through as a person with epilepsy, but I know that there's something out there for me.

I'm trained in graphic design, but I feel like working with others with epilepsy could be my true calling. Whether that be at the Epilepsy Foundation, a hospital, or who knows where else. As a person living with epilepsy, I feel like I can give very good advice on how to go on living a daily life with this debilitating disorder.

As far as graphic design goes, I see myself working in the non-profit sector. I just feel like helping others is the best way for me to live my life to the fullest.

Money is obviously an issue. Sara and I have been living hand-to-mouth since I developed epilepsy, and it's only getting worse. I don't know what to do. Money is money, I don't need much but I need enough to pay our bills on time and take some of the pressure away from Sara.

When I was let go from my last couple jobs (the most recent one was because of the seizures), it hurt me deeply and I still haven't quite got over that. Hopefully, even though setbacks are inevitable, I can put them aside in my mind and charge ahead.

My arm will be healed by the end other year. If anyone has and good leads for me, it would be greatly appreciated.

Thursday, September 10, 2015

@WGNMorningNews

Let's face it, news is depressing, but I found an outlet for receiving depressing information in a way that by the end I'm smiling. How is this possible?

Every morning I watch the morning news on WGN in Chicago. I've been watching it for years now. At first, I would watch it while getting ready for work. I would have the TV on while eating breakfast, taking a shower, and brushing my teeth. As I was getting ready, I would run around the apartment occasionally stopping to hear about the weather and stories of the day.

Then one day I started having seizures. This is when I went from a casual viewer into a outright fan. 

Epilepsy has put my career as a designer on hold for what seems like an eternity now. I look for structure in my day at home and I find that the news is an integral part of my morning, the structure I so desperately need now that my days are spent at home.

Now I wake up with my wife and feed her the news of the day (most importantly traffic now that she works in the city) while she runs from room to room preparing for her long day at work. The difference is, between all of the bad news that is offered to me on a daily basis, WGN finds a way to break this kind of news up with segments that lean on the lighter side of life.

I need this lighter side of the news because my life with epilepsy has been a whirlwind of emotion. I find myself not only having seizures, but also the psychological side effects of the seizures and epilepsy medications. I've had seizures during their program but have had the seizure end with a laugh. How is this possible?

The most depressing place to be while watching their program has to be the hospital while undergoing an EEG of my brain. (An EEG is basically a 3-7 day test where doctors glue wires to your head and provoke seizures so they can be measured.) I usually have 1-3 seizures, sometimes more. But everyday when I wake up strapped to a padded bed with wires glued to my head, I flip on the WGN Morning News to hear about what is going on around the city, and have a couple good laughs. I usually have a nurse, doctor or visitors in the room to share the program with, which is always nice. No one wants to be in a hospital room alone.

All I basically wanted to say here is news is important to me, but I need it fed to me in a way that by the time the program ends, I'm both informed and entertained. WGN Morning News provides that. Thanks to them.

Tuesday, September 8, 2015

Bankart Lesion Repair

Last Thursday I went in for a Bankart Lesion Repair on my right shoulder. Basically, after falling on it so many times during seizures my shoulder became weak and would constantly dislocate. Even when doing modest chores like taking a shower or walking the garbage to the bin. I would lift my arm up and the shoulder would just pop out quite painfully. After some rest and slow turning I could pop it back into place, but in the days that followed I'd be in a tremendous amount of pain.

Many of you know that this is not my first shoulder surgery. The left shoulder was broken during a seizure and I have a titanium plate with screws holding that one together. Thursday's surgery seemed less invasive as the incisions are small, but the pain level seems to be just about the same. The recovery time is similar, too. 16 weeks of physical therapy.

My family, and especially Sara, have been so helpful. They know that I still run the risk of having a seizure which wouldn't necessarily undo what the surgeons have done, but rather strain the muscles that are trying to heal, which would mean a lot of pain and discomfort.

I've been seizure-free for over a week after a bad two-three weeks of seizures and bouts of depression and anxiety. So far, so good. I did feel my anxiety level raise this morning as I knew it was going to be my first full day alone, tending to myself with only one arm. I've since sat down and tried to relax myself with TV and looking up places for our friend Jacqui from England to visit when she's here in Chicago at the end of October. Something positive to look forward to.

Today and in the days that follow are going to be tough, but I know that each day is going to get better. I'm going to learn how to live one-handed, and I'm going to be able to raise my threshold for pain so I'm not popping pain pills every four hours or so. 

Hopefully when this is all over, I can put this behind me, not forgetting these days but rather using this experience, as I do with all experiences related to epilepsy, as a learning tool to prepare me for my life ahead. It's all going to be very slow, and I'm ok with that. I need time to get my brain healed and my mindset in the right spot for growth.

Sunday, August 30, 2015

Foo Fighters

Sara was trying to find tickets to the Foo Fighters concert at Wrigley Field any way she could, (searching online, radio contests, etc.), I thought the dream of going to the show was over by Friday night.

Friday night was the appointment date for my last test before I could be cleared for surgery. It was an ultrasound on my thyroid. Earlier in the day I got a call from my doctor with results from the blood test and apparently I'm having a hard time keeping my sodium levels up in my blood. So, I was already feeling pretty shitty about those test results, and then I had to walk into the hospital to have them test my thyroid, which my doctor said felt a little swollen. 

Obviously, after the test, I felt even worse. We were walking to the car and I asked Sara to cheer me up. This is when she let go of my hand and slipped the Foo Fighters tickets into my palm. "This should cheer you up," she said. I was floored. She somehow found tickets. We were actually going to see the Foo Fighters at Wrigley Field!! I immediately forgot about the ultrasound and blood test results. I was so excited.

Saturday came and we planned loosely how we were going to get to the concert... just details. It wasn't until Saturday night, so during the day I rested in bed and she watched some of her favorite shows on TV in the living room.

At about 1pm, I had a seizure while in bed. It was a short, strong one. I called for Sara and she was with me through the whole thing. Obviously after the seizure, I rested more to recover. We agreed that we were still on for the concert because my recovery time was pretty good. Eventually, we both got ready and we headed to the city.

Once in the city, we parked, ate a quick dinner, and caught the first Red Line train to Wrigley. It was raining off and on, but it didn't deter us. We arrived early enough to see one of the opening acts. Soon we were itching to get in line for t-shirts before the concert really started and they ran out of shirts. We left our seats, and got in the line for merchandise. 

It was a very long line, but we both agreed that we needed to have shirts. It's not very often that Sara and I get opportunities like this, so we had to have something to take away with us. Plus, the shirts looked so cool!

Once we were at the end of the line, I started to feel a rush of blood to my head and got very dizzy. Then came the seizure aura; the warning my brain gives me that a seizure is starting. I grabbed my magnet from my pocket and started rubbing it over my chest to activate my VNS while simultaneously calling out for Sara and telling her that a seizure was happening. It was lights out for me after that...

The next thing I remember was being carted off through the hordes of drunken concert-goers to the first aid station. I could hear Sara's voice in the background but couldn't understand what she was saying. She might as well been speaking a different language. 

We finally got to the first aid station which looked like a hospital waiting room, with several rooms with hospital beds available. I started to come around to understanding words and directions from the nurse while she was checking my pupils. I took the Ativan I had in my pocket for emergencies and waited for it to start working. It did.... Quickly. Soon, I was understanding everything, but still very confused as to why I was there, etc.

After waiting 30-45 minutes I suppose, I told Sara that I didn't want to leave. I wanted to see the show. After another quick check by the nurse, we very slowly made it back to our seats. I held Sara's hand the whole way there. She was very gentle with me and asked several times if this is still what I want to do. It was.

We made it back to our seats and the show hadn't started yet. The Ativan was making me feel very relaxed and in a very good mood. Sara and I made small talk, then before we knew it, the Foo Fighters took the stage.

The show was amazing. I kept looking around at all the people and how amazing it all was. When there was a break in the music Sara would lean in and ask me what I wanted to do.... I wanted to stay. We were experiencing something that we will never forget.

Towards the last song I agreed to go so we wouldn't have to fight the crowds getting out and back on the train. Soon we were back at our car and on our way home.

I wanted to tell this story, not because of me having a seizure, but rather how lucky I am to have Sara in my life. She, without warning, became my eyes, ears, arms and legs. But more importantly, she became my voice. 

This is how Sara and I live our lives. Years ago, I would've cancelled plans after the first seizure I had that afternoon, let alone insist on staying for the concert after my second seizure. We did it together. I'll never be able to repay my debt to her, but I know in her eyes there's no debt to be repaid.

I love you, Sara. If I could say those words in every language to get my point across, I would. 

I can't wait for our next adventure. Let's make next time seizure-free, though, ok!? :)

Wednesday, August 26, 2015

Lexapro

There are many of us out there, not just epilepsy patients, who suffer from depression. I've been a sufferer for many years. Many of them have not been a clinical depression, but depression nevertheless.

When I was in high school I was going through a rough period, which many of us do at that age. I had dim lights in my room and I would play the alternative rock music of the time and lay on my bed, not wanting to see the outside world. I just wanted to be left alone. Some days were so tough that I would sit in my dark closet while the music was playing, sometimes until I fell asleep. It wasn't until I started really getting into art (which I would later pursue in college as a profession) that the depression finally lifted. But there were days that hit me later on in my college years that mirrored those days when I was locked in my closet, but the difference then is I had found ways to avoid it from taking ahold of me like it did then.

After college, I didn't see this depression again until my late twenties when I first developed epilepsy. From that day forward the depression grew and grew. Obviously medication for epilepsy doesn't help, but having your life ripped from you by this awful disorder is and has been devastating.

I've been put on meds for anxiety, etc to counteract some of the side effects of the many, many drug cocktails that I've tried over the years but I've never been put on a solid antidepressant. This is mostly because I only just recently agreed to finally see a psychiatrist for my mood disorder. He put me on an anti-anxiety med that I seem to be tolerating well with the new mix of epilepsy drugs that I'm taking, but the depression and severe lack of motivation has never really been addressed. Until now.

I now have a clinical depression. One where I can't find, though I've tried desperately, that outlet to kick the depression. Today I finally agreed or rather insisted that I be put on an antidepressant. I won't start taking it until after my shoulder surgery next week in case I have a negative reaction to it (I don't want any complications on the operating table), but I must say that I have never been so excited about starting a new medication.

The drug is called Lexapro. I've done my homework on its side effects, which seem to be minimal, but I won't know for sure how it'll react to my epilepsy meds until, like I said, after my surgery.

Maybe now, once taking it, I will find a way to live my life again as it was meant to be lived. Not in a chair, wallowing away at how horrible my life has turned out because of epilepsy, but rather refreshed and ready to take on the newest chapter in my life.

Friday, August 7, 2015

Whiplash

Yesterday Sara was in a minor car accident. She was stopped at a red light near our apartment on her way to work and a man crashed into her. She's ok, but she does have some pretty bad muscle pain from her head jolting around. We went to the ER to get her checked out when the pain became too much to bare. 

Sadly, we knew the procedure at the ER far too well due to me being in the ER more times than I'd like to remember. We waited a long while before the doctor could check her out and give her some muscle relaxers and recommended some over-the-counter pain meds. She's sleeping well, but he said the pain will only get worse in the next couple of days. This means I'm going to be her caregiver as opposed to her being mine, which is usually the case.

I haven't had a seizure for what's going on 25 days. This is very unusual, and I'm not used to it. I can say honestly that it has me both worried and relieved. Worried that the "big one" is just around the corner, and relieved that it's possible for me to have gone this long without a seizure. 

I'm not sure what I'm doing different, but I'm grateful that my brain has calmed down this summer. Last summer I was having 3+ a week while trying a new medication, so my doctor at Northwestern switched me to a "last resort" medication called Felbatol. Of course, I'm still taking three other epilepsy related meds with it, but Felbatol was banned in America for awhile because some doctors in the UK believed it could cause liver damage. I haven't had any problems that my doctor told me to watch out for, but on the higher dose he had me on at first caused paranoia and severe anxiety. This is a major reason I'm also taking an anti-anxiety drug. That, and some of my other pills can, and have, caused some psychological damage.

I know of epilepsy patients that don't experience these sorts of side effects but I guess I'm prone to them and have had to learn how to combat them through therapy. It's very hard, but I've managed to stay out of the psych unit of the ER for nearly a year now.

So, hopefully I stay seizure-free for the upcoming weekend where Sara needs me the most. The last thing our small family needs right now are two sick people wandering about, wondering when our luck will get better. For now I'm going to try to be strong, and be the man I know I'm able to be.

Monday, July 20, 2015

Making it Work

This post really speaks to the 1950s in me. In our family, Sara works as the bread winner as I deal my everyday fight with epilepsy. Disability is not fun, it's not a vacation, or any sort of fun free time that many of you wish you could have just as a break from your work life. To put it best... It sucks. I wake up everyday with a pretty clear docket, and go to bed on good days knowing that the only thing I did was not have a seizure. 

Of course, these days are tough, but not as tough as days, which are many, where I actually do experience a seizure. On "seizure days" I walk around the apartment in a fog. The next day I don't remember what I did. I don't remember what I ate, what I said, the list goes on. Basically, it's a lost day... Lost time in my life that I'll never get back. If Sara was home to witness the seizure I ask her questions about what we did that day. Simple things. Things most people take for granted. 

I've been trying to get myself back to work slowly. I've taken on a few small design projects, etc., but now I have to take more than double the time it used to take me to complete a project. That's probably the number one reason I'm on disability. A designer can't miss deadlines, and that's all I seem to be able to do. The projects I eventually finish are a far cry in quality from just a few years ago. I've forgotten a lot about the computer programs that I have to use to design. It's very frustrating and demoralizing.

There is a bit of good news. If you know me, you know that I like music, and that one of my hobbies is listening to vinyl records. I've found reissues of classic albums and go to yard sales and troll eBay for good deals on used records. I have a small collection now. A collection where I'm able to listen to some of my favorite bands from when I was younger, and newer bands that I'm just discovering.

Just a couple weeks ago I noticed that a record shop popped up across the street from my apartment. I worked up the courage to stop in and talk to the owner. It's an online record shop, so he sells on eBay and Amazon. He says that he wants to open a real record shop soon, but for now he's sticking to the online stuff. I told him that I'd like to help out somehow, even if it was just to get me out of the house for a couple hours a week. He thought that was a good idea, and called me a few days later with a loose plan to have me come in and help him grade records. Basically, that's just looking at a used records and defining the condition based on a scale of good to excellent. It seems kind of simple, but like I said before, maybe it will get me out of the house for a bit. My four walls have gotten pretty boring the last couple of years.

There's really no pay. He said that I could walk away with a free record every now and then, and that seems ok to me. I'm basically just testing the waters to see if my brain will cooperate enough for me to hold a job. He's doing me more of a favor, it seems. Plus, I'll be surrounded by vinyl records, which sounds pretty cool.

I need to be able to say that I bring in some financial support for Sara and I, and this seems like a smart first step. He knows about my epilepsy, though I still need to give him the run-down of what to do should I have a seizure. I'm sure he'll be fine with that.

It runs deep in me to be able to support a family, to work. Like I said before, not working has been hell. I know it's necessary for me to concentrate on getting healthy, but my quality of life is pretty low right now. Even doing design projects means I just have to move to the kitchen table to do work on the laptop. Some would call this the greatest commute ever, but I'd really like to be able to say someday that I go to an office everyday and work around people. Don't get me wrong, the cats are great, but human contact is something I need greatly right now. Hopefully by just walking across the street and grading a few records could lift my spirits enough to come back home and go to bed at night knowing I did something with my day.

Wednesday, June 24, 2015

Defining Epilepsy

Simply put, Epilepsy is defined as, "A disorder in which nerve cell activity in the brain is disturbed, causing seizures."

There are many different types of seizures, and many, many ways as to how a person develops Epilepsy. Take a peek at Twitter and you'll find countless numbers of individuals who suffer from Epilepsy and a lot of them keep online journals or blogs just like this one.

There are, however, epileptic seizures and non-epilepstic seizures. Read up online and you'll find information on this as well.

I suffer from BOTH epileptic seizures and a kind of non-epileptic seizure called psychogenic seizures. Basically, my brain has learned or has been trained to have epileptic seizures, so in moments of stress I can have these psychogenic seizures, as well. Both types of seizures look and feel the same to me. The only difference that I've noticed, or have come to notice is that my psychogenic seizures don't leave me with the same seizure "hangover" or strong postictal feelings that one of my epileptic seizures will leave behind. Plus, psychogenic seizures won't show up on an EEG.

I'm having to define Epilepsy because recently I was told by another Epilepsy patient that I don't have Epilepsy. Quite matter-of-factly, actually. Obviously, I, and some of the best doctors in the world have disproved this claim, but even knowing that there is someone out there, someone who also suffers from Epilepsy would say this to me is very disturbing and sick.

This has caused me great pain knowing that there's someone out there that suffers from the same horrible disorder that would confront a fellow Epilepsy patient; telling them that they don't have Epilepsy. I've heard of, and have experienced discrimination from people who do not have Epilepsy, but not from someone I hoped to gain support and camaraderie from.

My life has been destroyed by Epilepsy. I'll never again be the man that I hoped I'd be before contracting this awful illness. Too many hospital stays, too many EEGs, too many pills and the horrible side effects that go along with them, too many doctors giving me little to no answers on how to treat or possibly cure me of Epilepsy. Just too much pain to be discriminated against in this fashion.

If it were a stranger off the street with no knowledge of Epilepsy, I think I could handle this a little better, but not from someone who I thought I could trust.

There's a chance that the person who said this to me will read this post, and there is a possibility I will have to see this person in the near future, but I promised myself that this blog would be here for me to talk about my struggle... my fight, with Epilepsy. It has taken weeks for me to get the courage to write this, and it shouldn't be that way. This is my forum. A place where I'm free to say what's on my mind, so that's what I'm doing... and I'm doing it without fear.

Friday, April 10, 2015

I'm Tired

Over 8000 views, thank you.

***

For the past couple of weeks I've been having an abnormal amount of seizures. My medication has been moved around, but I'm still acclimating. If you know me, you know that my seizures are followed by a sharp emotional flip. Most of the seizures I've been having have been without this emotional flip, but the seizure this past Wednesday has certainly spiraled me down into a deep valley.

Tonight I made an emergency appointment with my therapist to discuss some of the bigger issues in my life with the hopes that they will trickle down to my day-to-day mood since my last seizure.

I didn't realize that my lower mood was caused by the seizure until I listened to a new record I bought last night. I sat and listened and it all became very clear to me. I've been saying to Sara and to myself that "I'm tired," which has been a warning sign, of sorts, in the past.

Last month I went to an epilepsy support group and when I left I felt energized and excited to have found people just like me. On Wednesday, after my seizure, I went to another one of these meetings and I felt lethargic and frustrated. About what, I don't know.

All I can say right now is that I'm counting the hours until I meet with my therapist so hopefully I can have some sort of emotional release. There's so much pent up energy inside of me and I don't know how to sort through it. Maybe she can help.

Monday, March 16, 2015

New Friends

A lot has changed since my last post. I did end up going to the Intense Outpatient Program (IOP) for one session last week. As soon as I got into the first session (one of four that day) I knew something didn't feel right. I guess I thought I would be treated by psychologists, but instead they were all social workers. There were just four patients, for which I thought there would be at least six or seven, and all they really did was give us stapled pieces of paper for us to read aloud to the group... like we all did when we were in grammar school. About 15 minutes into the session, I had a seizure. I turned to the social worker sitting next to me to tell her that I was about to have a seizure, I retrieved my VNS magnet from my pocket and started rubbing it over my chest. The next thing I remember clearly is the patient next to me educating the group that epilepsy patients were once burned at the stake. When I heard this, I bolted out the door in a bit of a confused rage. No one came to check on me.

After 15 minutes in the waiting room, my case worker came to me as she had been told what happened. They has no protocol as to how to deal with people with epilepsy, even though they told me that they've had patients in the past have seizures. They took my blood pressure (of all things) and called Sara. Needless to say Sara was very upset at the lack of concern, and at the lady who said that people like me were once burned at the stake.

We decided that this program wasn't for me. It was a group for depression, not a group for those with depression caused by illnesses. There was an epilepsy support group meeting last Wednesday at the Epilepsy Foundation in Chicago so we thought we'd give that a try. I couldn't believe how supported I felt. Everyone was just like me. They all had similar side effects like rage and depression and we went back and forth around the room sharing stories. It was so much fun. The hour went by so quickly, but it's probably because I was so interested in what everyone had to say. Very enlightening to know that there are people just like me... Epilepsy, depressed, cabin fever, jobless... they were all there, and with a smile.

Now looking at their schedule, there are groups just for men, a group for young adults, groups for family members, and even a social group that does activities around the city. I couldn't be happier at the potential that these groups have for me.

Today was an extra special day because I finally got to FaceTime my pen pal Jacqui from the UK. She also suffers from Epilepsy. It was a nice little conversation, simple and to the point, but it got the ball rolling for future conversations.

What a week.

Thursday, February 26, 2015

If There Was A Time To Pray

Ok. Deep breath. This is the third post that I've written since Monday. The first two I couldn't post because my mind wasn't right. I can still feel that things aren't 100%, but hopefully this post makes it to your eyes.

If there's a hell, I've been experiencing it this week. I've been very honest to Sara and my doctors, which is a big step from just a few years ago. Maybe that has saved me. I can say that even writing hasn't helped me feel much better, which is a huge change because usually after I write I feel at least a tad better about whatever is going on.

This is a clinical depression and I've found that it doesn't take much for me to have feelings of aggression towards myself fill my mind. I haven't had a seizure in a couple weeks, but I'll tell you that Epilepsy is a dream when compared to what I'm going though now. With my seizures, I lose consciousness for a time, feel sick to my stomach, confused, and eventually I fall asleep. When I wake up, I feel groggy with a slight headache. Generally, after it's all said and done I feel much better psychologically. I'm a little bummed that I had a seizure because the clock is turned back to zero when it comes to being cured, but I feel like there is very little that I can do to cure my depression. It's always there, and it's very dangerous.

The time of year, being at home alone all day locked in my house, and having nothing to keep my mind busy except the same music and TV shows playing everyday isn't helping either.

Yesterday, my doctors wanted samples of my blood to check all of my medication levels to see if there was a problem there. I woke up with Sara and rode to the city with her on her way to work to be dropped off at my sister's house which is just a few blocks from the hospital. The ride was silent.

After hanging out with my sister, we got out and ate lunch in the city before walking over to the hospital to have my levels taken. I could feel that just by walking and being surrounded by people helped my mood, no matter how temporary that might've been. After the hospital, my sister and I just chilled on the couch and watched for home improvement shows. I felt good.

My doctors suggested that I attend something called Intense Outpatient Therapy. It's basically a month long analysis of my mental health, and classes to teach me better coping skills. I really have no choice but to agree to this treatment. It's not like I'm skeptical about the program, but I'm worried about my ability to absorb the information and actually use what I've learned in real life.

All I can say about what I'm feeling is that it's totally out of my control. It feels like a wave rushing over me. It starts in my chest and stomach eventually enters my psyche. It's like a bad drug slowly flowing through my veins. I don't really notice it until it's too late. By the time I realize what's happening I've already had several dark visions.

I talked to my psychiatrist over the phone for the majority of the yesterday, trying to get my mind right and set me up for the Intense Outpatient Therapy (IOT). Then, guess what!!?? I find out that my new insurance doesn't cover my psychiatrist at NW or the IOT! So, I spent the rest of the day trying to reinstate my old insurance. I cleared my checking and savings account, but I was successful.

So take the man with Epilepsy with emotional disorders on disability and basically steal his money. What a world we live in. Now, it looks like I'm eating pasta that we've had stored in the cupboard and stay home (not exactly what I need) for the next couple weeks.

If there was any time to pray it would be today.

Friday, February 20, 2015

Healthy Addictions

Since my first seizure, I've been looking for something that I can attach myself to. A hobby.

I know I have an addictive personality. Before my first seizure I was completely enthralled with photography. I would buy old 35mm cameras, fix the up, and I could wait to get outside to shoot photos. I bought a film scanner so I could share my work online (flickr.com/photos/smithjryan). Eventually I turned that healthy addiction into a career of sorts. I started shooting for the local newspaper. I would get assignments everyday after my job as a graphic design (for which I was also addicted!), and drive around the area shooting youth baseball, social events, etc. I loved it. The problem was as soon as I had my first seizure, my love for photography completely disappeared. The doctors said that pieces of my personality would change and they were right about that... for the good and the bad.

Today, I've been trying to find something to attach myself to. Recently, I started to collect records and I love listening to them, but I find myself just sitting in a chair, staring at the floor while listening. There has to be something I can do that intrigues me while I listen to records. Like right now, I'm writing and there's a record spinning in the background.

Photography was something that could get me out of bed and out of the house. Records can only do that to a point. I can't drive, so it's not like I can drive around looking for records, or work in a record shop. That would be pretty cool now that I think about it!

This blog is a healthy addiction. I write and I feel a lot of the stress of the day kind of wisp away. I also have a pen-pal in the UK that I trade emails with on a semi-daily basis. We talk about our lives and what bothering us. We seem to have pretty similar lives when it comes to Epilepsy. I wish I could communicate that to other Epilepsy sufferers because it's a huge help.

That's all I can really say on the subject of addiction. I know that the word addiction is a heavy word, but it's the only word that I can really think of that describes my situation.

I would appreciate any comments on the subject. Is there anything out there, for those who know me, that would inspire me? I need to find something to do while my records are spinning.

Also, I'm approaching 8,000 views on this blog. Thanks to you all.

Sunday, February 1, 2015

Blizzard on an Early Sunday Morning

It's snowing outside. Snowing a lot actually. We're supposed to get nearly a foot of snow when it's all over.

Right now I'm sitting in our kitchen typing and listening to some asshole butcher a Beatles song in the bar downstairs. It's karaoke night. Obviously, I can't sleep through this so I thought I'd write instead of sit on the couch, pissed.

I had another seizure since my last post. I've been only having three or so seizures a MONTH instead of three a week on this new medication called Felbatol. There are the depression and aggression side effects that I've mentioned before, but so far I've been able to combat them with other medications and some life tools set before me by my doctors and family.

One tool was to use Twitter to meet new friends who also have Epilepsy. It's been rather interesting talking with some of these people. One person in particular is from London, England, or very close to there... a suburb I would guess. We've been trading emails for months now, and that's why I haven't been writing blog posts as often.

She and I have a similar type of Epilepsy... intractable. Basically, what that means is our condition doesn't respond, or isn't responding well to medications. Even our seizures are similar, so we can trade stories, and otherwise bitch about how much it sucks having to deal with life AND Epilepsy at the same time. The difference is, she works and I'm on disability and am not currently unemployed. All of the hardships she seems to have at work, I've also experienced. She also has the same sort of support system at her job as I did when I was still working.

I think a lot about my time as a designer, and what my life is like now. Yes, I do get very depressed when I think about it, but like I said before, there are tools that I can use to combat these feelings. They don't always work 100%, but at least they're there for me when I need them.

One tool I use a lot is music as a hobby. I find myself spending hours in front of my turntable listening to my favorite bands. I have new music (new music to me), and music from my past, like what I would listen to in college and in high school. I find that these albums always bring back good memories, never bad ones. There's something magical about that. I can't quite understand why looking through old photographs can make me so depressed, but playing the soundtrack of my past can evoke so many good feelings.

I just have to know that while the music is playing, I have to remind myself that I'm a person with a past, but with also a future.

It's still snowing.

Monday, January 26, 2015

Olive Drab Bag

Yesterday, I wasn't feeling good. I had a bit of a stomach ache. I laid down around noon. While I was asleep, Sara took down the Christmas tree and packed up the ornaments. When I woke up, I rolled over to her side of the bed and noticed a green messenger bag that I used to carry in college. The bag means a lot to me because it holds so many memories, and if you know me, I have a hard time letting things from my past go.

I must've stared at the bag for ten minutes, each one of those minutes I thought of all the times I walked to and from class and the items I carried in it.

There was a girl in college who liked the bag very much and offered to buy it from me. She offered nearly every time she saw me carry it. At the end, the price she offered was $50. A lot of money for a kid in art school. I always declined because the bag meant so much to me.

While staring at the bag while I was in bed, a strong wave a depression came over me. I've been having these sorts of episodes quite often but this one was different because it involved my past and the mindset I had in college.

I had such big dreams then. The world was so big and my future as a professional designer was endless. I never thought in a million years that it would come to an end the way it did.

So here I am, staring at a green bag, clinically depressed and there was nothing I could do about it except to communicate this to Sara. We had a long conversation about it, and she talked to me about what it meant to be a person in my (our) situation.

Life in college was so simple. I studied, I worked hard for grades, I made friends, I met my future wife. All good things. We talked about what I have now and that my future isn't written yet. This was the kind of conversation I needed to help me though these feelings of regret and remorse.

I still see the bag in our room, and I see it in my mind. I can't say as though I am completely over the depression, but I can see that my life is different than I expected for a reason. I am a man with Epilepsy. A strong man, even though sometimes I feel so weak and defeated.

I'm trying hard to live up to this. I'm trying to use the tools set before me to combat these feelings. They're working just enough to get me out of depression and on to reconstruction of the life I'm destined to lead.

Thank you, Sara.