My Story - Growing Up

Growing up can be tough. Growing up with epilepsy can be more tough. Sometimes it can be really tough. Luckily, there were some things that helped me along the way.

Early on, Dr. Wang told my parents not to treat me any differently than any other child. He told them to let me do whatever the other children do, and not stop me. This was great, because I was still allowed to climb trees, and swim, and ride my bike, and do all the things that "normal" kids get to do. But that doesn't mean that nothing was different for me.

Anyone who has ever asked me to tumble ("do back flips") knows that my parents always taught me to protect my head. This is something that has become habit. I can't do a back tuck because it is beyond unnatural for me to go backwards. I don't know where I'm going, and therefore I can't guarantee that my head is going to be safe. Even attempting the backwards motion is almost impossible for me.

My parents also told me, from an early age, that all of my teachers, coaches and close friends should know about my seizures. That didn't mean that I had to tell everyone, but there were a list of people who should always know. That was to keep me safe. If I had a seizure in class, or at a sports practice, and my teacher or coach didn't know, then they would have no idea how to handle it, and would likely freak out (like many people do when they see a seizure.) If they were informed ahead of time, they could prepare themselves for that scenario. My friends knowing did come in handy a couple times. Those stories will be saved for later.

These days, I pretty much do tell everyone (as evidenced by this blog.) OK, not quite everyone, but there is nobody that I would hide it from. If it comes up in conversation, then it comes up and I don't worry about it. I tell my story like it's an open book, and I answer any questions that people may have.

Many people who I know who have epilepsy went through this phase of being diagnosed. That diagnosis generally cones with a phase of being upset, depressed, embarrassed, and/or other deep feelings. I never went through that because it was always a part of me. It was just a part of life for me, so I can't always fully understand those feelings when people talk about it.

All of my close friends have always known about my seizures, and a few have seen me have seizures. But they also know that my epilepsy is the one thing they could never joke about. People can make fun of me for being a nerd, or being a cheerleader, or playing too many video games, and I accept all of that; I usually just laugh it off. But having seizures is not something that I chose, and it's the one thing that I don't let people joke about, even to this day.

My Story - Early days

Since I started having seizures almost immediately after being born, I also started seeing a neurologist almost immediately as well. My pediatric neurologist was Dr. Wang - which is pronounced like "gong" not like "gang". He had a saying "If you're saying it wang, you're saying it wong."

Dr. Wang put me on medicine to try to control the seizures, and my mom started a seizure journal. A few years ago, we found a small piece of this journal and I digitized it. Here's what I found:

1985

Feb 7 2 Seizures with Apnea

Feb 10 2 Seizures with Apnea 

Feb 20 Off  Dilatin 

Feb 24 2 Seizures @ home

1 Seizure in the ER

Turned Blue

Started Dilatin

Mar 29 Completely off Dilatin

Apr 21 2 minute seizure

Stopped breathing for 10 seconds

Apr 22 4 minute seizure

Back on Dilatin (4cc's 2x's)

1986

Jan 13 2 minute seizure

Eyes rolled back into head

Left arm jerked

Jan 16 3 1/2 minute seizure

Jerking, then stiff, bent arms, eyes rolled back

After it stopped he went to play immediately 

then seized again for 10 seconds

Jan 16 Seized in sleep (11pm) for 1 1/2 minutes

Phenobarbitol - 5cc's 2x's/day

Feb 2* 3 1/2 minute seizure

Lips started to turn blue

Eyes back and body jerking (7:30pm)

Feb 3 4 minute Seizure (1 am)

Took to hospital - Pheno blood level @ 23

Back on Dilatin - 50mg 1x/day

Feb 3* 3 minute Seizure (7:30am)

Eyes back and body jerking

AFTER last 3 seizures he had high temperatures

1987

Mar 9 2 1/2 min Seizure (11:35am)

Eyes back and body jerking

Was weaning off Dilatin - Hospital put him back on 2 1/2 tsp/day

1990

Fell on garage floor at babysitters house and smacked head.  Stood up - fell - went stiff - foamed at mouth and lost consciousness. Was awake for ambulance.  Had 10 second or so Grand Mal when they were trying to attach IV.

1993

Jan 9 Seizure on Stairway

Jan 10 2 seizures in toy room

Fell off stool and turned blue

First time Stephanie witnessed one.

A star/asterisk (*) indicates that I was not taken to the hospital.

I recall some of these incidents, but not many. For instance, I remember the 2 listed in 1993, but not many details. I remember that it was a weekend, because I had seizures both Saturday and Sunday that weekend, and that was abnormal for me at the time. I remember thinking that it had been a bad weekend for seizures. (And I actually remember a bit about the one on the stool in the "toy room".)

I've also heard stories about the one in 1990 at the babysitter's house, but I don't remember the incident. From what I've heard, it was raining and I think we had been playing in the rain. Then I slipped and fell in the garage and had the seizure. But again, all of this is stories from other people. I don't actually remember anything from that day.

Also, notice that I was on and off of medicine, and switched from one medicine to another a few times until we found Tegretol. It's actually not noted when I went on Tegretol, but I assume it was somewhere in the emptiness of the log between 1987 and 1990. I was on that until 2014.

This is also not a complete log of every seizure that I had. I'm not sure why these are the ones that were logged, or why they were not all logged, but I do know that this is likely incomplete.

My Story - The beginning

On Wednesday February 6th, 1985, my mother gave birth to a healthy baby boy. Or, at least, mostly healthy.

(Let me again start by saying that this is obviously not my story, this is mostly from what I have heard from my mom, put into my own words.)

After giving birth to what appeared to be a healthy baby, the doctors took me away from my mother - as they usually do with newborn babies - to clean me up and do whatever else they normally do with a newborn baby. After waiting a while for them to return me, she realized that the woman in the bed next to her, who had also recently given birth, was holding her baby. She also realized that the woman next to her had given birth after she had, but yet that woman had her baby back and I had not been returned yet. So she asked the doctors why I had not been returned. That's when she got some news.

I was only a few minutes old, but I had started having seizures. This was obviously concerning to both the doctors and my parents.

My Story - For Epilepsy Awareness Month

This year for epilepsy awareness month I've decided to do something a bit different. Instead of posting facts about epilepsy, I'm going to be telling the story of my life with epilepsy.

I'm not quite sure how I'm going to go about this quite yet, and I'm sure that I'm going to miss some things (there's a lot to cover.) I'm thinking that these are going to be roughly twice-a-week entries, and will be tagged with "My Epilepsy Story."

Throughout this journey, I would like you all to keep a few things in mind:

1. A lot of these stories take place in a time before I can remember. I obviously can't remember things like the day I was born, and honestly can't remember much from my early childhood.
2. When someone has a tonic-clonic seizure, which is the kind that I have, they are completely unconscious. Meaning that I do not know what happens during my seizures.
3. Seizures cause issues with memory. Not only memory surrounding the event (immediately before and after the seizure are always blurry) but also general memory issues.

Because of these points, many of the stories are not my own memories, but stories and memories of my parents, siblings, friends, or others who were around. Honestly, anything prior to somewhere around the year 2000 is probably mostly from someone else, possibly with a few minor memories from my own head.

So keep all of that in mind when reading these stories - they are not entirely mine, and therefore may have been slightly altered over the years through multiple retellings. However, they will be as accurate as my mind allows.

I hope you all enjoy. The story will begin in my next post.

Decision

So before I get to the actual decision that needs to be made, you need to know some background information.

Hospital Visit

Most of you probably know that I went into the hospital in May for long term monitoring, where I was hooked up to an EEG 24/7 for a few days. During the visit, we found that my recent seizures are what are called "non-epileptic seizures." This means that they are not actually caused by abnormal electrical activity in my brain, but are actually caused by my mind. There is something sub-conscious that is causing a physical manifestation that resembles a simple-partial seizure. That doesn't mean that all of my seizures were of this type. The seizures that I had when I was younger were in fact epileptic seizures. Apparently non-epileptic seizures are fairly common in people who also have epileptic seizures.

At the end of the visit one of the doctors said that since I have been 10 years without an actual epileptic seizure, I may be able to come off of my meds. At the time I said no because I wanted to try to get the other seizures under control first. I thought that coming off of the meds would cause more anxiety and potentially cause them to get worse. They did, however, take me off of one of the meds, and I am down to taking only Lamictal.

I have since learned how to better control those seizures. They're not 100% gone, but the ones that do happen are insignificant compared to what I experienced in the past.

Recent Happenings

Recently I have been having a hard time breathing during and after some of my workouts and at some cheer practices. I have now been to a few doctors trying to figure it out and they have found nothing. Then it came to me that it may be a side-effect of my meds. I looked it up and sure enough "shortness of breath" is listed as a "rare" side-effect, but yet I found a lot of people on-line complaining about it. I thought about it a bit and realized that my breathing seems to be at its worst when I take my meds before a workout/practice. I have recently been taking my meds after practices, just because it's more convenient, and haven't had as many issues.

Decision

So now I have a decision to make. I want to talk to my doctor about coming off of my meds, but like all of the other med changes, it's one of the most terrifying things that I can think of. At the same time, I have never in my life had the luxury of not having to open a bottle every day that says "may cause drowsiness." The few times that I've tried it didn't last long enough for me to actually get to enjoy that feeling. It's something that I have always wanted - to not take pills twice a day and to know what life feels like with no side-effects.

At this point this is not only my decision. I still have to talk to my doctor, and it will obviously need to be a joint decision. But if we do decide that it's something that I should try, I will need support from all of you. It's not something that I want to go through alone. I know that I have friends and family who are there if I need them, but I may need a little more help than usual.

Doctor Visit

I just realized that I said I would blog about my doctor visit and never did... so here it is

Pre-visit

Last week I sent to my new neurologist at the Strong Epilepsy Center, which is awesome because now I get to see an epilepsy specialist instead of a general neurologist.

Before arriving, they sent me a questionnaire about my medical history and whatnot. It was like 10 pages, and I actually didn't know a decent amount of it. "At what age did you take your first step? ...walk on your own? ...say your first word? ...say your first 3-word sentence?" That's just a few of the ones that I didn't know, which my mom didn't know either. (Mom knew some of the other stuff that I couldn't answer)

Visit

So I get there, the doc (Dr Bonno) is reading the book that they call a questionnaire, and asking me questions along the way. About 30 minutes later, we're pretty much done with those questions and move on to more questions. Then the usual neuro exam... walk on your tip toes, walk on your heals, walk in a straight line, touch your nose then my finger, etc. etc. etc. (I've done it so many times now that I could administer the test myself.) After the test more questions. Then the reflexes thing (hitting the knee with the hammer, rubbing the hammer on the bottom of the foot, etc.) Then more questions... I think you see where this is going. Lots and lots of questions and conversing.

After much of this, about 1.5 - 2 hours in, she starts talking to me about epileptic vs. non-epileptic seizures. Epileptic seizures are caused by over-activity in the brain, non-epileptic seizures are often caused by the mind - stress and whatnot that creates a physical reaction. She started telling me that epileptic seizures are not usually more than a couple minutes, so these are likely non-epileptic seizures (which is funny because my previous doctor said that it's not uncommon for partial seizures to go on for a long time.) Thinking about this, I come to the conclusion that such a thing is very possible considering my family's history of depression and other such conditions.

After a while, she decides she's going to consult with Dr Berg (who I somewhat know from the epilepsy foundation.) At this point I've been there at least 2 hours. they come in and Dr Berg is asking questions, a lot of which were similar to the previous line of questioning. Asking  mostly for a brief history of my seizures (mostly the more current ones) and my auras, rather than most of the other stuff that we talked about. After about 5 minutes, the two of them leave the room once again to chat.

A few minutes later, Dr Bonno walks back in by herself. She tells me "alright, you're complicated." Great, I kinda knew that already, but thanks. Dr Berg thinks that since I often get the same aura with these partials as I did with the tonic-clonics, they may in fact be epileptic seizures. However, Dr Bonno thinks that they may start as such, then continue on as non-epileptic, or may be non-epileptic entirely. We don't know for sure right now, but 3 hours after walking in, I'm finally walking back out.

Conclusion

So where do we go from here? To the hospital. For about a week. They're sending me in for "long term monitoring," where I will be hooked up to an EEG and monitored 24/7. Dr Bonno told me to expect 5-10 days, the lady on the phone (who made my appointment) said 3-5, so I'm going to say 3-10 days that I will be in the hospital. They will be taking me off of my meds (or at least lowering them) and waiting for me to have a seizure, so that it can be seen on the EEG.

They have wifi so I can have a laptop or "handheld gaming devices," I can obviously have visitors, and can have someone spend the night with me if I want, I can bring my own clothes - as long as they don't go over my head... because of the wires connected to it. But overall I get to sit, bored as all hell, in the hospital, waiting to have a seizure for up to a week and a half.

I go in May 6th at 2pm, so you better come see me :-P

Tattoo - Epilepsy Foundation Logo

3.25.15

As some of you know, I'm getting a new tattoo of the Epilepsy Foundation flame logo wrapped around the Master Sword from the Legend of Zelda series. This is an image that I put together quickly from images that I found online.

To me is symbolizes cutting through epilepsy, but the flame (the Epilepsy Foundation) is also giving me strength by forging the sword.

The sword design that I picked is from the Skyward Sword game, which is the first in the Zelda timeline. It's not just the first game currently in the timeline, it is the first possible appearance of the Master Sword in the timeline. In the game you forge the sword from the flames of the goddesses, which is why I see the flame as part of that forging process.

I'm supposed to get the final drawing from the tattoo artist today (3/25/15) and start the first session of the tattoo on Friday (3/27)

I will update this post with pictures at each step.

Update 3.26.15 - Drawing from the artist

Update 3.27.15

It took 3 hours, but it's done and it looks amazing

Step 1 - Outline

Step 2 - First Coloring

Step 3 - And Final Product - Sword Detail

Update 4.24.15 - 4 weeks later

There are a few spots that scabbed pretty badly and are still healing. Therefore, those spots are a little fainter than the rest, but they should look fine soon. If not, I can always get it touched up slightly. 

Also, the lighting and the angle are different than the original pictures. so some things are a little different in real life than how it looks in the picture (though,it definitely isn't as bright as it was on day one, especially the green, but that is to be expected.) 

This picture was me taking a picture of my own leg in a computer lab at work, and the others were the artist taking the picture in the studio. I found that it's kinda tough to get a good picture of the back of your own leg.

Am I crazy?

So... am I crazy?

I'm sitting here thinking about the fact that I am in constant pain on the right side of my body, so much so that I'm debating taking Ibuprofen before bed. Yet I still go to the gym multiple times a week (doing both cardio and weights) I still cheer as often as I can (and I'm even planning on doing a partner stunt routine next year) and I still do it with a smile. So I ask again... am I crazy?

I don't know what the outside world thinks, but I don't think I am. I'm doing what makes me happy in life. Right now those things are getting more and more difficult to do, but I'm not going to stop because I'm a little sore (OK, maybe a lot sore.) That's life. Things get sticky and we have to push past everything that is trying to hold us back. I keep saying it and I'm going to keep saying it... I've never let anything get in the way of doing what I want to do, and I'm not going to change that. Regardless of seizures and the pain that they cause.

Pain/soreness has just become that guy that nobody likes, but he hangs with you anyway. The guy that people learn to put up with because you just can't get away from him for any extended period of time. You ignore him hoping that eventually he'll get tired of trying, and that he'll just go away, but he doesn't. (You've all had someone like that at some point, admit it.)
I've learned to deal with it. I've learned to look past it. To "ignore" it as much as possible. I can go a while without hurting by just not paying attention to it, but eventually it comes back. On the rare occasion that it is finally gone for real, something happens and it's back again. Maybe not as bad, or maybe worse, but it always comes back.

Pain is my body's way of saying "stop you idiot!" but my heart is saying "I can't stop!" and I've learned to always listen to my heart. Life is about doing what makes us happy. What are you doing if you can't be happy? You're doing something wrong, that's what you're doing.

A lot of people say that you "have to think about the future," and say "don't do anything stupid." Some would say that what I am doing is "stupid," that I am putting myself and my body at risk and I'm not "thinking about the future." But I don't care what others think, and I'm sick of thinking about the future. Sometimes you need to think about the present. Make the best of now because you'll never have now back, and you may never get to see the future that you are thinking about.

I've done a lot of stupid things in my life. Some of them were really stupid... truly, very stupid. But most of them made for an awesome time and an even better story. If I'm being stupid by continuing to workout and continuing to cheer, then I'm fine with it because I'm having an awesome time.

The worst of the stupid things I've done in life aren't at all things that I've done... they're the things that I haven't done; Things that I made a conscious decision not to do, for whatever reason. Most of those reasons weren't good reasons, they were just reasons. This time I'm making a conscious decision to do something, and I know the reason - because it makes me happy.

So for the last time I ask... am I crazy? Maybe. Do I care? No. I know a lot of crazy people, and most of them are good friends and/or family.

Phantom Seizures

I think I've been having more and more "phantom seizures" as I will call them.

The other night I was at my computer and was just fine, then I could faintly feel a seizure. Parts of the right side of my body were twitching. Not enough for anything to really move, more like just the muscles themselves slightly tweaking out. After a couple minutes, my shoulder was sore, right under the shoulder blade - and by that I don't mean lower down my back from the shoulder blade, I mean below the skin is the shoulder blade, below that is muscles. That muscle hurts. And it has before, seemingly for no reason, but now I'm understanding why.

At the hockey game tonight, about halfway through, my right knee started bothering me. Again, I didn't really feel any physical symptoms. No part of my body was actually moving, but I knew something must have been happening because it suddenly hurt. I payed attention to my body a bit, and could slightly feel the feeling in my head that I get before/during/after a seizure. Then later, after the game my, shoulder started hurting again. Now my arm hurts, mostly around my elbow. So basically it's enough to make me sore, but not enough to notice what's going on.

As I've stated before, this makes a lot of sense because this kind of thing happened a lot when I was younger; I would hurt for no reason. I went to the doctor multiple times as a kid for my right knee, and they couldn't tell me that anything was wrong. Over the past few years (maybe the past 5-10 years) my shoulder would randomly get this pain, but not as often as my knee. I'd go to do something with my arm and I'd feel this sudden intense pain, right where I feel it now. Sometimes it hurt enough that it took a while to get my arm back to a neutral position. The pain would go away within a day or so at most, but it still sucked. The question now is - how often do these really happen? Obviously more often than I realize.

I wish I could do something, anything, to make this pain go away. Being sore 24/7 is getting really annoying. I guess it's time to get a protein shake before going to bed.



NOTE: this was written about midnight, so I waited until morning to post it so that people would see it.

Seizure News

Some good news and bad news:

Bad news: I woke  up at about 5:30am Tuesday morning during a seizure. The first thing I felt, before eve trying to sit up, was my hand doing its thing - squeeze then relax, repeat the process for however long it wants. About 15 minutes in I took an Ativan (which is supposed to stop the seizure and knock me out) and no change. Another 15 minutes and I took another Ativan. Still nothing. Since the bottle says "take 1-2" I figured it is now time to go to the hospital.

I live right almost directly across the street from the hospital (I'm set back a bit in an apartment complex,) but with the cold weather, and 2 Ativan in, I decided that walking down slippery outdoor steps and across a street while groggy and seizing was not a good idea. I didn't wan't to pay ambulance fees if I didn't have to, since it wasn't a dire emergency, so I had my mom come get me. It was probably about 7ish when we got to the hospital (time is relative since I was drugged up and my mind was literally fried.)

I spent roughly 8 hours in the hospital having seizures for roughly 3-4 of those hours. They gave me an EEG during one of the seizures and the results somehoe came back "normal." Again. I asked over and over for food, but they didn't bring anything until 1pm, so the last time I had eaten was probably 6ish the night before. Now that I think of it, I don't think I ever got my morning meds (or maybe they gave it to me at the hospital and I don't remember.)

I don't remember most of the rest of that day except my mom taking me back to her place, eating McDonald's, hating her dogs for waking me up continually, then going to bed at like 7 (ish of course).

The next morning, I woke up around 6 so that my mom could go to work and I could decide whether or not to go to work. It was indisputable "no," so I spent most of the day sleeping. Today tried to go to work, was there like 2 hours and had to come home. After some sleep and still feeling like crap, I got up and had some lunch meat to eat. Suddenly I felt a lot better. I then had some Goldfish crackers, a pop-tart, and a bowl of cereal. Felt a little better still.
I thought back at what I had recently eaten - sandwich at 1pm Tuesday, McDonald's 4pm Tuesday. Eggs and toast 6:30 am Wednesday, A sandwich and snacks most of the day Wednesday, a small "dinner" at an Al Sigl event Wednesday night, and pretty much nothing this morning - a granola bar and a cinnamon bun - because I didn't have much time to eat breakfast. So it made sense that food made me feel better.



Good News: I left one part out of this story: this morning.

Yesterday my doctor called and scheduled a follow up to the ER visit; That appointment was this morning. I talked to the doc, he asked me about the EEG and I said that the ER said that the results were normal. He mentioned that he had received the same info. We talked about the med changes that I've been going through, and decided we that the Keppra (that I just got fully weaned off of) was not helping. I was on such a small dose over the past month that it would have no effect. The only reason I was still on it was to not cause my body to go through shock from withdrawal.

After talking about the medicine, we went back to discussing the EEG. He mentioned that since this is the second time that this has happened, my seizures are probably drug resistant; meaning that no amount of medicine is going to help.

He then told me that he is going to refer me to the Strong Epilepsy Program, which is pretty awesome. He said that they can talk to me about non-drug related treatments, and since they are constantly researching over there, they may have some cutting edge tech. The only small issue is that I'd have to pay for parking, and I hate that. But the benefits of possibly getting more control highly outweighs a small cost of parking. I also won't be seeing my current doctor anymore, which is kind of a shame because I liked him as a doc.

I should hear from Strong within 1-2 weeks, and they will setup an appointment with me. I can't wait to see an epilepsy specialist and see what the next step will be :-)

Witnessing my first seizure in public

With about 5 minutes left in the RIT hockey game tonight, I looked over to the pep band (1 section over from me and the corner crew) and saw a kid having a seizure in the middle of the band. I literally sprinted up the steps, over to the next section, and down to him.

One lady pretended like she knew what to do, but she had no idea. She just kinda got everyone out of the area and watched, so I took over. I rolled him on his side, like you're supposed to, and just kinda supported him in that position. There was a hoodie under his head, but it was basically just laid out with only a small part of it under his head. I saw the side of his head hitting the concrete and literally felt vibrations in the floor from his head hitting it. I yelled at someone in the row above me, who was also just kinda watching, and told them to take the hoodie, bundle it up, and get it further under his head so that it was actually doing something. Meanwhile, I'm trying to hold his head and body up just enough to stop his head from hitting the ground. Someone got the hoodie under his head and I set him down, still keeping him on his side.

As the paramedics came over, I kept him on his side until they could take over. The seizure was stopping, but he still wasn't there consciously. When the paramedics got the situation more under control, I left and let them take over. I went back to the corner crew, but I just couldn't stay. I went over to the band and reassured them that he was going to be OK. The band director came up to me, thanked me, and shook my hand. I proceeded to tell him that I have epilepsy, told him a little about camp and that I had never witnessed one outside of camp.

I've said before that I've witnessed a ton of seizures at camp, but it would catch me off guard and probably scare the crap out of me if I saw one in public. I was right. I'm kinda drained both emotionally and physically right now. I had to turn him on his side using mostly my right arm, and that is the side that is always weak from my seizures. I was supporting him (holding him on his side) with both arms, but he wasn't exactly a small guy, so that didn't help. He's not huge, but not as small as the kids at camp that I'm used to. (Plus I generally have help at camp.) All of that left some soreness in my arm.

Not only the physical, but also the mental/emotional stress. I've witnessed so many at camp, but this was different. I can't imagine what the band and their director are going through right now. I was on the verge of tears afterward, and I don't even know the guy. I know that they're all worried about him, but I hope that they are alright too.

Seizures triggered by diet?

I think I've found another of my seizure triggers: food (and/or nutrition.) For various reasons, I know that it is possible for diet to both cause and prevent seizures (depending on the situation)

It seems like a lot of these seizures are occurring when I haven't eaten in a while. I'm not necessarily hungry, just haven't eaten in a while.

I noticed a while ago that it seemed as if my seizure almost correlated with my workouts, but the relationship wasn't quite there. I didn't look into it heavily, but I did look enough to make the decision that "nah, I don't think that has anything to do with it." I still don't think that they are correlated... at least not directly.

Working out means that you need to increase intake. It makes your body require extra nutrients in order to maintain the energy level that you are used to. Specifically, working out mainly requires extra carbs and extra protein. I know most of you are thinking... "but I've always heard that low carb diets are the best!" Not quite true. Carbohydrates give you energy. If you workout without increasing your carbohydrate intake, your body is going to be lacking necessary energy. If you are trying to lose weight with diet alone, and no extra exercise, then a low carb diet is probably better.



A quick science/nutrition lessen:

Carbohydrates: There are 2 main types of carbohydrates - simple carbs and complex carbs. Simple carbs are things that your body can break down easily and use as short term energy. Complex carbs take longer for your body to break down, and therefore provide long term energy.

Some sources:
http://www.fitday.com/fitness-articles/nutrition/carbs/simple-vs-complex-carbohydrates.html
http://www.nutritionmd.org/nutrition_tips/nutrition_tips_understand_foods/carbs_versus.html

Protein: the main function of protein is to help your body repair itself and grow.

http://www.nytimes.com/health/guides/nutrition/protein-in-diet/overview.html

Before a workout, you should have a mix of carbs and some protein. The simple carbs will give your body extra energy that will help kick-start your workout, some complex carbs will help sustain the workout, and protein will help your body to start to repair itself as quickly as possible. One of the best pre-workout meals is a PB&J sandwich. The PB provides the protein, the jelly provides simple carbs, and the bread provides complex carbs.

After a workout you generally need more protein than anything else. While working out you are literally damaging your muscle by causing microscopic tears. The muscles repair themselves over time, and are stronger after this repair process. Extra protein will accelerate this process, as well as allowing the muscle to repair itself more thoroughly, increasing strength just that much more.

The difference between these two requirements are why there are different protein bars for before a workout and after a workout.



So why all of this diet and science mumbo jumbo? Well, as a lot of you know, I've been working out a lot lately. Mostly walking (and running when my leg allows me to) and some lifting here and there. My body is in a constant state of searching for energy and repairing recent muscle damage from those workouts. Since it is constantly looking for these things, I need to constantly provide them. Constantly.

I seriously try to eat once every couple hours. Not necessarily a meal, but some fruit or a snack of some sort. Sometimes a "snack" is a sandwich, sometimes it's pretzels, sometimes it's whatever I can find. But eating that often is not always possible. When my body requires this fuel and can't find it, it doesn't know what to do. Lack of sleep and exhaustion are common seizure triggers... so my guess is that lack of carbs and/or protein may exhaust my body, possibly to the point where I start seizing.

Now all of this is just a theory... "A game theory"... Oh wait, this isn't YouTube (look it up.) But although it's just a theory, I think it has a lot of merit. It's seriously hard to eat enough to provide my body with what it needs. I am not usually tired, which means that I'm probably getting enough carbs, but that doesn't necessarily mean that I'm getting enough protein. I said at/after camp that I didn't think I was getting enough protein, and that may have been causing the (many) seizures that I had at camp. That food was extremely lacking in the protein department, which is what brought that thought to mind. If I'm not getting enough protein, then my body could be overworking itself in an attempt to heal and, boom, seizure.

Now the question is, how do I provide myself with constant protein throughout my work day?

Treatment Options

As I sit here, having yet another seizure, I have to think about my future options.

I started on Vimpat last week, bringing the medicine count up to 3... Keppra, Lamictal and Vimpat. I am currently on 100mg of Vimpat and will double that to 200 a week from today. If that doesn't help (which it currently isn't) my doctor wants to do a long term EEG. For those who don't know, a long term EEG means that I would sit in the hospital for up to a week with wires connected to my head, waiting to have a seizure.

I think that his thought process is to see if I'm a candidate for a VNS. Again, I'm sure that a lot of you don't know what a VNS. Without going into a lot of detail, and doing what I can to explain while seizing, VNS stands for Vagus Nerve Simulator. It is implanted into your chest (around where they put a pacemaker) and it occasionally sends an electrical pulse to your Vagus nerve, which connects up into your brain. The electrical stimulation to this nerve can prevent seizures. If you do have a seizure, it can be activated by swiping a special magnet over the device and effectively stop the seizure, or at least lessen the duration of the seizure.

So after all of that, it sounds like a great idea. It would potentially help with my seizures (if I'm a candidate) so why not? Well, it is a surgical procedure to implant it. From what I hear it's outpatient surgery, so it's not incredibly intense, but it's still surgery. As a coworker pointed out to me, removal of wisdom teeth is also outpatient surgery, but that hurts like hell for about a week.

Not only that, but it requires a new battery every 4 years. So that means another surgery every 4 years to replace the battery.

The question I have to answer for myself: Am I having enough seizures to do this? Is it worth it in the end? I know none of you can answer that for me, but I need to think about it. Before I try the VNS, I'd like to wait until the medical marijuana goes into effect and try that. We'll see though. It's been a long battle so far, and I'm not about to stop fighting.

PS - it's been about an hour since this seizure started, and it's still going.

21 years at Camp EAGR

So this is it. As of this year, I am of legal drinking age... in camp years.

21 years at camp is a lot of time. 138 days. 3312 hours. (calculations based on 6 days per week as a camper - 9 years as a camper - and 7 days as a counselor - 12 years as a counselor)

As always there were some highlights and some not-so-highlights

The week started off interesting. When we were out the night before the kids showed up, someone said something like "Is that Randy approved?" and that simple statement sparked a thought in my head... I need a rubber stamp that says "Randy Approved."

The next day we went to Walmart (as always, since that's about all there is in Warsaw) and while looking around I saw an address stamp. Of course, since it's an address stamp for personal use, it was customizable. It came with 2 sets of letters (each set with about 5-6 of each letter) and a pair of tweezers to put the letters on with. Of course I bought it, made my "Randy Approved" stamp, and started stamping everyone at camp... and maybe some logs... and some other random stuff.

Some of you may remember that I set a goal earlier this year. I hadn't climbed the rock wall in a few years for various reasons: My leg hurt, I sprained my foot, etc. Bottom line... I was too out of shape to try, and I kept making excuses as to why I didn't want to climb. Well, despite many seizures in the days leading up to the wall (I'll get into that later) I climbed the wall! It was the easy wall, and my body was basically destroyed already from seizure soreness, and afterward I was even more sore and almost dead from climbing a wall that I *really* shouldn't have climbed... but I made it to the top of the wall. I was determined, and I forced myself to do it. And I succeeded.

This year there were A LOT of counselors having seizures. Seizures are normal at camp (after all, it's a camp for kids with epilepsy) and most of us counselors are former campers turned counselor, but this year we had an exceptional number of counselor seizures. I myself had 7 seizures in the last 5 days of camp. 2 on Tuesday, 2 on Wednesday, and 1 every day following. My cabin had the rock wall scheduled for Thursday morning, so by that time I had already had 4 seizures and the right side of my body was absolutely killing me. By the end of the week, my right tricep and my right shoulder were so sore that I was actually wincing in pain during every seizure. I think I took 3 Ativan pills throughout the week, which is just unheard of for me.

The week ended with what is going to sound terrible, but was actually an amazing moment. Before that though, some back story.

Throughout the week, there was a girl named Grace who was in Camp COAST (a new addition to Camp EAGR which is for adults 18-25ish) who was having a lot of seizures. I had been helping Grace's counselors with her seizures whenever I had a chance. At meals Grace's table was right next to mine, so I was at their table helping out whenever I could. Grace's seizures weren't violent or anything, she just kinda lost consciousness and would slowly tip sideways or backward. The hardest part of caring for her seizures was just getting her into a safe and comfortable position. And the fact that she had a lot of them made them difficult as well.

Near the end of the week (Saturday morning I think) I started having another seizure during a meal. Lauren (Grace's counselor) knows me well, and knew that I was seizing. As we were walking out of the dining hall, Grace started having a seizure near the bottom of the hill. I started helping Lauren, as I had been throughout the week, until Lauren yelled at me: "You can't take care of a seizure while you're having a seizure!" Of course I argued with her until her co-counselor came over and Lauren made me leave, A few minutes later, my seizure stopped... or so I though. My leg had stopped shaking, but the seizure was still active.

Thinking that the seizure was over, I went back over to Grace and started helping with her seizure. Again Lauren yelled at me, but allowed me to help after I showed her that both my arm and leg were under control. While Grace is on the ground, and I'm crouched down helping keep her in a safe position, my leg starts going again. Now I'm having a seizure while caring for a seizure, which is exactly what Lauren didn't want. Luckily, Lauren didn't know. As it started into my arm, it got a bit hard to hold Grace, but I fought through the pain until the seizure was over. When Grace came out of the seizure we got her up and away from the hill, and all was well again.

The amazing part of this moment was just realizing, more than ever, that I can do anything at any time. I literally cared for someone else while I was having a seizure. Most people would have walked away and not looked back, but I couldn't do that. I wouldn't let myself do that. I had spent so much time caring for Grace that week that I had to take care of her before myself, because I KNEW that I would be OK. I knew that she would be too but I still had to help, just in case. As terrible as it sounds, it was seriously one of the most amazing and memorable moments of my life. It's indescribable what I felt looking back at the situation.



So there it is. Camp 2014 in a nutshell. Of course, there's WAY more to tell than all of that, but I could spend days writing about both the ups and downs of camp every year. The "Randy Approved" stories alone could go on for hours.

Too many seizures

I feel like I'm living on medicine lately. Like I need so many meds, just to still live a not-so-normal life.

Meds to try to prevent my seizures - Keppra and Lamictal
Rescue meds to stop the seizures when they're happening - Ativan
Pain meds to allow me to move my arm without pain - Ibuprofen
Magnesium to try to supplement everything else - it's been said to help migraines and/or seizure activity

And now I'm going to try to use my allergy meds as a supplement as well, since I think my allergies may be a trigger for some of these seizures.

It's exhausting - the seizures, the anticipation, the side effects... and just taking so many damn pills; average 12 pills daily assuming 0 Ativan, only 1 dose of Ibuprofen - 3 pills, 2 magnesium, 1 allergy pill, 3 Keppra and 3 Lamictal. Increase that to 13 if I take a short term allergy med along with a 24-hour one, which is usually what I do, 14-15 if I take Ativan for a seizure, and another 3 pills every extra Ibuprofen dose I need (I usually try to max out at twice a day) bringing our total to as many as 18 pills per day.

I had 13 seizures in 8 days, spent an entire day sleeping (which led to no seizures that day) followed by 2 more. This week... 3 on Monday, 3 on Tuesday, Wednesday was sleep day, then 2 more on Thursday. 8 seizures in (effectively) 3 days. Straight up exhausting. And all of this started during camp, which makes it even more exhausting.

My doctor has been out of the office all of this week and returns today (Friday.) I have an appointment with him for Monday, but I need things to change ASAP. I need yet another medicine, I need to know what caused all of these, I need more rescue meds, I need these to stop - or at least slow downs - and I need answers. 29 years with no answers... I need something.

Hope

I posted this link on Facebook the yesterday and mentioned that I think #4 is only partly correct:
http://www.huffingtonpost.com/ilana-jacqueline/personal-health-_b_5482294.html

A friend who also suffers from a chronic condition shared it as well, and he agreed with my analysis. (I say condition because neither of them are an illness. We aren't "ill" in any way, we have a condition.) He added his own title comment, and I commented on his post and said: "It's a fight that you can never stop fighting, and if you lose the consequences are dire."

After a post that I just made this morning, I thought back to this article. The fight is not always physical, and I think this article (linked above) suggests that it is. In fact, 90% of the time the fight is not physical. More often the fight is mental and/or emotional. People are often asking me "how are you so calm about this!?" Others are freaking out about my seizures and I'm all like "meh." Because I have to be calm about it, and just accept it, in order to win the fight. I have to always think that I can go longer without a seizure. I have to do what needs to be done in order to live on to be a better person every day.

Today I posted that I have been 12 days seizure free and that I go to camp in 40 days. At the end I said that I hope to be 52 days seizure free when I get to camp. This is the thought process that I must have. I can't say "I hope to be at least 12 days seizure free when I get there!" Because that is not my hope. My hope is that I never have a seizure again. Is it a realistic possibility? No. But I can always hope.

I am not a religious person, so I don't believe in "faith" that most people talk about and believe in. Faith is a blind belief in something that cannot be proven or disproven. It is trust in something that you have been told even though you have no reason to trust it. Faith is something that people use to force themselves to believe something that they wouldn't otherwise believe.
I do, however, believe in hope. Hope is a state of mind. Hope is something empowering, hope is positive thinking, and positive thinking can have both mental and physical benefits. For some people faith leads to hope, and I therefore I cannot fault people who have faith. If your faith leads to hope then keep having faith, because when you lose hope you lose everything.

Just as I am not religious, I am also not an optimist, or a pessimist; I am a realist. I look at things as how they are, not how I want them to be. The glass isn't half full or half empty, the glass has water in it. This is why I say that it is not realistic to think that I will never have another seizure. It is an unrealistic thought, because I have had epilepsy all of the almost 30 years that I have been alive. But while I am realistic about the matter, it is absolutely necessary to hope that I won't have any more seizures.

Seizure weekend

The past couple of days have not been fun.


Thursday

Thursday I went to lunch with 3 coworkers. Half-way through lunch (around 12:30) I started into a partial seizure. At first it was nothing out of the ordinary. My leg was twitching slightly, my head felt a bit weird, but nothing too bad.

The walk from Dinosaur BBQ back to the office was a bit rough, because of the leg, but not too bad. I got back to the office and sat down at my desk. Soon after I got to my desk my leg started going a little more intense. It lasted a while then calmed down. A few minutes later it started back up again. I was doing as much work as I could throughout this whole thing - answering questions for my interns, helping them figure out some issues, etc.

At 2:30 I was supposed to meet with the server team to talk about something that we had discussed at our larger Monday morning meeting. At this point my leg had stopped, and I could tell that the seizure had subsided. I knew at the time what I was supposed to be talking about at the meeting, but soon after I got to the meeting I forgot what we were going to talk about. Another seizure had started. The server team had something dropped on them last minute, and they were talking about that when I got there. Nobody remembered why I was there, and I still don't recall.

The seizure that started during the meeting was in my arm, as it has been occasionally before. It got pretty intense fairly quickly, so around 3:15 I told my boss that I was going home to rest. The seizure stopped shortly after getting home, and I slept most of the day.


Friday

Friday morning I woke up at 6:30, as I always do, knowing that I was not likely going to be in any shape to go to work. Sure enough, I was still exhausted from the 3 hour seizure(s) the day before, and I had a headache as I often do after a seizure. Usually these headaches last for quite some time, and will not subside unless I sleep them off.

Shortly after waking up I sent a text to my boss, and my team, telling them that I was OK (since they had witnessed the seizures the day before) but that I would not be in because I was still tired and had a headache that was not likely to go away any time soon.

At 7:15 another seizure started; Again it was in my arm. It's not normal for me to have this many seizures in such a short time, so I sent a text to my mom telling her what was going to the hospital and quickly walked across the street to the hospital. (Yes, luckily I just moved almost directly across the street from a hospital.) My mom was going to pick me up and drive me to the hospital, but my arm was going so intensely that I didn't want to wait for her.

I got to the hospital, went through the normal stuff (gave them my name, birthday, etc.) and went into a room to be taken care of. In the room, they took my vitals - blood pressure, temperature, pulse - most of which had to be done on my left arm, since the right one was shaking violently. They asked if I was in any pain - which I was, but mostly from the sore muscles from the violent shaking - and asked how much on a scale of 1-10. They asked again why I was there, at which point I gave them more information about the situation. They asked about allergies, of which I only have seasonal allergies. All of the normal stuff when going to the hospital (unfortunately, I know this procedure all too well.)

I was taken to a bed, where I was given an IV (also in my left arm.) Shortly after, unrelated to the IV, I started feeling some pretty intense pain in my right arm from the muscles contracting and expanding so quickly and violently. (It didn't help that I was in the gym on Tuesday working my arms.) Eventually it got to the point where it was not only my arm, but my side, (abs, lats, etc.) my shoulder, and my bicep - which I know is part of my arm, but it's usually just my hand and forearm; It usually doesn't go up past my elbow. It got so violent that my mom actually took a video of it on her phone.

It was by far the most violent and painful partial seizure that I have ever experienced. At 8:00am, 45 minutes after it started, the seizure finally stopped. For quite some time after it ended I was still wincing in pain from the seizure, and was extremely tired. I sat with my eyes closed, even answering questions from the nurses and doctors without opening my eyes.

Eventually my arm felt almost like it was not even there, When I went to move it it felt almost weightless, but at the same time was extremely sore. If I bent it too far, or straightened it too much, it would hurt, so I had to let it sit at a very specific angle.

I had told the nurse in the first examination room that I was starting to wean off of the Keppra that I have been taking, so they later gave me 1500mg of liquid Keppra, to hopefully prevent further seizures, and gave me a prescription for Ativan in case I had another extreme seizure. For those who don't know, Ativan is used an emergency drug for seizure that last extremely long and/or are extremely violent. My prescription says that I can "take 1 tablet every hour as needed for seizure" with a "maximum daily dose of 3 tablets." If I am still having issues after using those 3 tablets, I am to return to the ER. (Hopefully I don't need any of them.) The doctor also told me that it will make me extremely tired if I need to use it.

Just like Thursday, I again slept most of the day, waking up every couple of hours to eat and because my body isn't used to being asleep during the day. (Not since I stopped working at the hospital at least.) Later in the evening, somewhere around 8pm, I had another small and short seizure that only affected my foot and lower leg. It only lasted 5 minutes or so, maybe less, so it wasn't too bad.

Right now (early Saturday morning) the entire upper right quarter of my body is sore. My side, my arm, my shoulder, and even my back. My leg is a bit sore from Thursday's seizure(s), and the small seizure last night, but not nearly as bad as my upper body.

Friday Morning's seizure:

Going Forward

Now I am supposed to return to my previous dose of 2000mg of Keppra each day, and I need to follow up with my neurologist this coming week. From talking to him in the past, he wants me to try a medicine called Vimpat next, but after looking into it I found that it is a controlled substance. From what I've heard, a paper prescription is required for every refill of a controlled substance, which would mean that I need to physically go to his office every month to get my refills.

We have talked about some other options in the past. He mentioned Topamax, but I have heard nothing but bad things about Topamax, so that's another one that I don't want to try unless absolutely necessary. He has also mentioned Zonegran, which some of my friends are on, and I want to try that first. Last time we talked he was pretty much set on Vimpat, but he usually listens to what I want so hopefully Zonegran will be my next try.

More medicine changes

689 days ago - July 3rd 2012 - I had my first ever (recognized) partial seizure. Soon after that my doctor and I started messing with my meds. Here we are, almost 2 years later, still making changes.

Almost about a year ago I went to my doctor telling him that I was having horrible emotional side effects from the Keppra that he put me on and said that I would like to try Lamictal instead, since that was the other medicine that he recommended. So I, very slowly, started taking Lamictal and building up to an acceptable level. 3 blood tests and 4 months later, I got to that acceptable level.

As we were doing the change he told me to try being on both for a while as Lamictal often offsets the side effects of Keppra. So I did. I tried it for a while and still felt off. I was more tired than normal and had problems thinking clearly - as I noticed about Tegretol after coming off of it. Exactly 1 month after starting the full dosage, he changed the way I take the medicine - from 1 Lamical in the morning and 1 at night (1x1) and 1x1 with Keppra, to .5x1.5 Lamictal and 1x1 Keppra.

Changing the dosing times made me feel more of the emotional effects that I had felt prior, so a few months into that dosage I switch myself to 1x1 Lamictal and .5x1.5 Keppra. The emotional side effects lessened, but they were/are still there.

We had set an appointment to talk today, at which I explained my situation - I changed my dosage again, and am still having seizure, but much less often (I'm at 23 days right now, which is near a record for 2014.) He mentioned trying to come off the Keppra and possibly trying Vimpat - or not adding Vimpat and just coming off of the Keppra. I agreed, stating that the reason that I went on the Lamictal was to come off of the Keppra, but I would rather not add anything else quite yet. I had actually thought about this while driving to the appointment... what is the next step?

So that's our current plan - I'm lessening the Keppra, v e r y    s l o w l y. lowering by a half pill per day at one month intervals (.5x1 today, .5x.5 in 1 month, etc.) As always, this is a bit scary and a bit exciting. I'm looking forward to getting rid of some of the side effects but, as I did when coming off of the Tegretol, I'm a bit scared of having more seizures, or starting to have Tonic Clonic seizures again. The other problem is that this is, once again, a 4-month process, so I won't really know the outcome for quite some time.

I'll try to keep you all posted.

Helpless

Today is March 26th 2014. March 26th - Purple day. A day that I usually celebrate my epilepsy, spread the word about epilepsy, think of the people who I have met, and the good things that have come from the disorder that most people don't understand, or have no positive memories of.

Today was different though. Today I started to feel helpless.

For the first time in a long time, possibly ever, I am starting to feel comfortable in my own body. I'm getting back into shape and I am gaining confidence in myself that I never had. I feel proud of the things that I have accomplished - physical accomplishments, professional accomplishments, personal accomplishments.

But as I start to feel comfortable in my body, my body is falling apart. Not because I'm getting older. Not because I'm letting myself go, or have let myself go. My body is finally starting to fall apart because of my seizures. Because of the 34 partial seizures (or possibly more if I missed some) that I've had in the past 10 months.

My right calf is often hard to walk on. My right forearm actually hurt today (Wednesday) from a seizure that I had on Saturday. It was quite possibly the strongest partial that I've had to date. While it was happening, I tried to show a friend how I can stop my leg from shaking during these seizures... but I couldn't.

Not only was it immensely intense, but it was at a party. A party celebrating a 30th birthday. A party at which I knew nobody prior to that night except the host.

As the seizure was happening a handful of people sat there watching me, wondering what was going on, and surely feeling just as helpless as I was. They wanted to help me, I could see it in their faces, but they didn't know what to do. They didn't even know how to talk to me about it... but they did. After it was over and I got up to use the bathroom.

When I returned from the bathroom, they asked me "what happened? Are you alright?" And of course I told them the truth. "That was what's called a simple partial seizure." And as I expected, they continued to ask questions - what does that mean? Have you had them all your life? How often do they happen? Etc. One of them even said that she thought that it was just a muscle spasm, which is probably what I would have thought had I been in her position.

I have no problem explaining my seizures, talking about epilepsy, educating people... in fact normally I enjoy it. But this time it was a bit awkward. Trying to explain to a couple of people that I just met that night what they just witnessed... while I'm still in the seizure.

I knew that the seizure wasn't done when I heard my voice. I started explaining everything to them, but my speech was broken. My voice was almost like a scratched record. I was still breathing fairly heavily. I could barely look at them because I could feel my eyes doing whatever it is that they do during my seizures. But they still asked their questions, and I still answered. I powered through it as I have always done with everything in life.

The problem is - I'm getting sick of having to power through things. And for the first time ever, I can say that I have no control over the vow that I made to myself years ago... I am allowing my seizures to stop me from doing things. I'm trying not to let them control me, but I can't stop it. My leg won't let me do some things.

I'm not normally a runner, but I have been trying to run and I physically can't. Not because I am out of shape, not because my lung capacity isn't good enough, not because I lack the ambition, not because I don't have somewhere to run... in fact I have everything necessary. But my leg physically can't handle it because of the seizures. And it makes me feel helpless. It makes me feel like I want to cry. It makes me angry. It makes me feel defeated. It makes me feel a need to push harder... but I can't! Pushing harder would just make it worse. Which in turn makes all of those feelings even stronger.

For the first time ever, I feel helpless. I feel like no matter what I do I can't repair my body. No matter how hard I try to get stronger I just get weaker, or at best stay the same. For the first time ever I feel like my seizures are taking over my life, and it's getting hard to fight back. I'm trying my best to not give up. Trying to keep fighting no matter how hard it is. But I feel like I'm starting to lose the battle. I put on a strong face, but there are times that I'm dying inside despite the facade.

As always, I will keep going. I will keep pushing forward. I will keep doing whatever is necessary. But it's not easy. And I'm trying not to let it break me down.

Pain

Pain is the such a crazy thing. There's physical pain, emotional pain, and mental pain. All of those things can add up to one of two things: motivation or devastation. If you're a strong person, pain will motivate you beyond belief. Motivation to be better, motivation to feel better, motivation to do better. If you're not so strong, pain will bring you down and eventually destroy you. It adds up, leading to even more emotional and mental pain, which ends up in a downward spiral that is nearly impossible to escape.



Today was a painful day. Right from the get-go I was beating myself up with some old memories that I just couldn't get out of my head. Trying to push some things out of my head, and out of my past. I was fighting these thoughts all day. Already emotionally draining.

Then 9:30 or so comes around, and I feel my right calf tightening. I didn't feel this one coming, but I knew what was next. I tried to loosen it up, move my leg around and at least stop the pain for a bit. Then the tapping started. And it got quicker, and quicker, until it got hard to control. As usual, this uncontrolled tapping leads to pain and fatigue in my leg, and is starting to drain my energy.

Ed asks me to go install some software at someone's desk while this seizure is going on. He doesn't know that I'm having a seizure, but I am. Now I have to control my leg enough to walk, which just causes it to hurt even more. I'm physically exhausted, and my calf is killing me.

I get the install done, walk/limp back to my desk, and now I need to call someone and do a remote install of a printer. I'm on the phone, still mid-seizure, trying to give him instructions to get this remote session going. My mind is not quite working at 100%, because it's still seizing, so I'm slowly going through this process, forcing my mind to work enough to get through this. My slow thought process leads to slowly forming sentences, and therefor slow instructing.

My fingers aren't quite doing what I need them to do... they're hitting the wrong keys, double pressing keys, skipping letters, and for some reason I tend to reverse letters a lot when I type mid-seizure, which means I'm constantly backspacing and correcting mistakes. A half hour later, I get through what probably should have been a 10-minute or less job.

I sat there and waited out the rest of the seizure. After the leg stopped (almost 11:00) my head was still in a bit of a fog for about another hour, maybe more. Meanwhile, I'm internally debating a somewhat awkward decision that I'm going to be forced to make soon (which I can't go into much detail about) when someone comes to talk to me. This just inadvertently, and unknowingly, makes that decision even more awkward. Between pushing through the seizure and this awkward moment, suddenly I'm mentally exhausted as well.



Now I have a decision to make: am I going to let this push me forward, or is it going to push me down? Years ago it would have pushed me down, and I would have stayed down for quite some time. But being the person that I have come to be, there was no decision to be made. I not only let it push me forward, I forced it to push me forward. On my way home I listened to some of the most infuriating, most energetic, and most scream my head off music that I have. Suddenly, all of this pain has turned into pure energy. Energy fueled by hatred, confusion, neglect, despair, and any other negative feeling you could ever imagine.

I took all of this energy to the gym, and I ran. I ran until I couldn't run anymore. I pushed that painful, exhausted right calf to its breaking point. I pushed until there was nothing left to push. I left all of that pure negative energy on the track, and suddenly there's nothing left; no energy at all. But as the energy slowly returns, it's not negative energy. I've just overcome a huge obstacle, and it feels good.



The thing is, my leg still hurts; It hurts more now than it did before going to the gym. Those memories are still there, and they always will be. That decision still needs to be made, and it will remain that way for some time. But I no longer care. I left it all behind, at least for now. It's all back at the gym until I have the time and energy to fight each one of those things individually. And when I do that, that's when amazing things happen.

So next time you have a painful day, ask yourself one thing: am I going to let this bring me down, or is it going to push me forward? If you decide to let it push you forward, some of that pain may still be there (like my leg pain.) Let that remaining pain push you even more. Turn that pain into energy again tomorrow, and the next day, and the rest of the week. You'll find yourself climbing a mountain instead of being stuck in a downward spiral.