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.

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!? :)

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.

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.

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.

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.

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.