Ramblings about my epilepsy

This is something I wrote the night before having that last partial seizure a couple weeks ago. I never published it because I was still writing. But I think this is enough for now.

This and the part that says "UPDATE:" were added tonight... after the initial writing.

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Not many people look at me and immediately think "there's Randy, he has epilepsy." But truth is... I think about it every day.


I'm forced to think about it - I take medicine twice a day.

I choose to think about it - I have this internal need to know how and why things are the way they are... and this is the one case where I have no idea. So I am constantly analyzing myself. Studying my own behavior, noticing my body's reaction to certain situations, and my own conscious reactions to situations.

I need to think about it - I want to always make sure that I'm safe in any situation that life throws at me. Therefore, when I'm driving I'm often thinking "what would I do if I had a seizure right now?" When I'm at work I'm thinking "What would the people around me do if I was to have a seizure right now?" and when some external stimulus is thrown my way that I'm not used to, and I suddenly feel a sensation that I'm not used to, I'm forced to think "is this an aura, or is it something else?"

I'm a better person for thinking about it - I am constantly trying to improve myself, to prove to others that I can do just as much as they can... and in many cases, more than they can. Not because of my epilepsy, but despite my epilepsy. I've said before, that I use it as driving a force. I push myself to prove to myself and others that I can and will thrive in life.



Most people don't realize how often I have to remind myself that I have epilepsy. Or how many times life chooses to throw me a subtle reminder.

Since my seizure last summer, I have been aware of every little unexpected movement in my body. It was the first time I had ever had a partial seizure. The first time that I was conscious and aware of EVERYTHING despite the fact that I couldn't completely control the right side of my body.

Since then, I have had a couple of occasional muscle twitches. Probably nothing unusual... the muscle is overworked, or something moved just right in there to force it to move unexpectedly. But every time that happens, I do a full inspection of myself. Not physically, mentally. I think - is there anything truly unusual going on, or is this just a muscle twitch? What do I need to do in this particular moment if this is an oncoming seizure? Did I have an aura and not recognize it as such?

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UPDATE: I now think that some of these may have been partial seizures. Probably not all of them, but at least a few. Especially any that may have been preceded by a ringing in my right ear

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Most of you reading this have no idea what it's like to have such thoughts, and you never will. However, this is my daily life. So much so that these thoughts just happen out of instinct. I don't make a conscious decision anymore to think about my surrounding and analyze my best option in the event that a seizure were to occur, I just go through that thought process out of pure habit. Almost like you might walk into a room and take off your shoes, or hang up your coat. I walk into a room and make a complete assessment of my surroundings. I come up with a plan of where to go, or who to talk to if something happens, and I put forth no actual effort in doing so... it just happens naturally.



The craziest thing about all of this... I don't even have very active seizures. I am forced to think about my epilepsy multiple times a day, and seizures aren't even a very active part of my life. I can't imagine this process in someone who does have active seizures.

Or maybe it's just me and my crazy brain. I am a very detail oriented, very logical, and process oriented. If I don't have a process to follow, I create one. And that's what I've done here. I've created a process to keep myself safe in every possible situation, in every possible location. But of course, no process is flawless. If some very real danger were to present itself, I may not be able to keep myself safe even without having a seizure.

More Seizures

It has been a while since I blogged here or in my development blog. I have been busy moving, and didn't have my computer at my new place yet, and have just had a lot on my mind... including something that I've so far only told a couple people.

Friday night I had another partial seizure. It was fairly minor... to the point that if it was anyone else experiencing what I experienced, they would not have known what was happening.

I went to my mom's house Friday night after work to get some stuff to help me pack/move. While there, my right ear got a sudden, loud ringing in it... loud enough that I actually grabbed for my ear. She asked "What was that?" and I just played it off as nothing, saying it was an itch. At this point, I still didn't realize exactly what was happening. I got what I needed and went back to my place.

When I walked in, I realized that my right side was extremely weak, and my right ear was still ringing. Not a constant ring, but ringing. After a while, my right leg was so weak that I had trouble walking on it. It was like I had a severe limp. Both my right leg and right arm felt like dead weight. I could move them fine, but they felt strange. I could actually feel my heart beating in my chest, and it felt like it was beating slightly faster than normal, but not extremely fast. When I moved or breathed heavily my right ear would ring again... until the movement stopped, then the ringing would stop. My right eye seemed a little blurrier than normal, (my right eye is always weaker than my left eye, and I think the seizures are part of the reason why,) and last, but not least, I felt like everything was in slow motion. My thoughts seemed slower than normal, and it just overall felt weird.

This lasted probably about an hour from beginning to end, with the "symptoms" worsening in the middle, and returning back to normal near the end. In the middle of this, I opened a notepad on my computer and wrote down some of the things I was experiencing. I used that list to write the above paragraph. Needless to say... I didn't get anything packed or moved Friday night, as I had planned.

Saturday we moved the big stuff, Sunday I rested most of the day, and Monday life returned to "normal".... except that I couldn't get out of my head the fact that I just had this seizure. And throughout the weekend I'm starting to think... this is not the first time something like this has happened.

I started thinking back, and realized... I've probably had dozens of these... maybe hundreds. The difference is, this one was a little more intense than most. I have gotten the ringing in my ear right plenty of times... I actually told my Neurologist at one of my previous appointments about it. Sometimes that ringing is followed by weakness in my right leg, and a slight limp. I usually attribute this weakness to my hamstring acting up. In 2000 I badly pulled my right hamstring while playing football, and it hasn't been the same since. So when I get this weakness, I normally blame my hamstring.
Not this time though, this one was worse... I could barely put any pressure on my leg without it collapse beneath me. And it wasn't just the leg, it was basically the entire right side of my body that was affected.

So I decided... it's time to call the doctor. I was actually supposed to see my Neurologist late last week, but missed the appointment because I was so busy moving that I forgot about it. So I called and rescheduled, since I just had what I believe to be a seizure.

I saw the doc yesterday. I told him what happened and he agrees that it was likely a partial seizure. There was no change in consciousness, so my driver's license and whatnot will not be affected. I told him that I don't think this is the first etc. etc. so we are going to schedule an EEG and slightly up my medicine after the EEG to see if that helps. (We're upping the medicine after the EEG to hopefully be able to see something on the results of the EEG.) Unity is supposed to call me and schedule the EEG. Last time he told me this (after my last recognizable seizure) they never called me, so the receptionist gave me their number so that I can call them early next week if I have not yet heard from them.

Even with this, I'm still a little bugged out knowing that I'm having more seizures than I realized, and that they're a new type of seizure. They don't affect me as much as the tonic-clonic seizures, but it's still unnerving knowing that they're happening.

However, I have further confirmed that the seizures are mainly affecting the right side of my body, and I feel that knowing that can possibly help in figuring out what's going on in my brain.

There is so much more to write... so much going on in my head right now, so many emotions, so many worries... but I think I've said enough for now. If you would like more, feel free to message me, email me, or for those that know me personally you can text me, etc.


TL;DR: I'm having more partial seizures than I realized, and it's a little unnerving knowing that.

Busy Busy Busy

I've been crazy busy lately! Trying to live healthy, finding a new place to live, trying to clean/pack the current apartment, acclimating to the new job, going to the gym when I don't feel too overwhelmed, and trying to get some programming in on whatever free time I may have.

So here's where I'm at:


Diet

the living healthy is still working well. It's not easy, but it feels good. it takes a little extra time to plan meals, and prepare meals before/after work, but it's worth it.

I'm finding now that I need to add the occasional salty snack in. Salty snacks (like potato chips) are my "guilty pleasure", and I haven't had many while on this new diet. I crave it though, and when I have had some it was really good. . I'm also finding that when I do give in to the cravings I eat less of it, which is good. And I think the main reason I'm craving it is because my body actually needs some more salt and fat and such. (You do need these things in your diet, just not in high doses.)

So all in all.... it's a learning process. Having a balanced diet is not as easy as people think, and right now I think I'm actually too heavy on the "healthy" foods and need some "guilty pleasure" food occasionally.


Apartment

I put in an application to a 2-bedroom apartment in Henrietta yesterday. It's right next to Walmart (not too far from RIT or work) and it's fairly cheap compared to other places in the area. It comes with heat, hot water, and Frontier Internet (we'll see how good the internet really is...) It's a pretty nice place inside. The bathroom is a bit small, but I don't really care much about that.
I set a potential move-in date of the 18th, and might move that forward a couple days so that I can start moving some small stuff on my way into work those days.

My current apartment is pretty much set to go when I start moving. I need to clean my bedroom and the bathroom a bit, but I vacuumed the living room last weekend and I cleaned the kitchen and the dinning room table (which was all pretty disgusting, from what Matt and his kids did to it). So it's pretty clean, now I just need to start packing things . (Most of it doesn't really need to be packed, it can just go over... mostly just my room needs to be packed)

I'm going to clean out my car this weekend too. It's a disaster right now. I tend to horde things in there in the winter, then clean it out summer. I usually do this the week before camp, but this year it needs to get done early because a) it's so bad, and b) I need to put things in there to move.
I didn't clean it out last year because I wasn't driving at the end of last summer due to my July 3rd seizure. This made it so that my week-before-camp cleaning wasn't necessary, as I wasn't driving it to camp, and now it's extra bad because of that.


Job

The job is not bad. I'm not super ecstatic or anything, but I never am about any job. As I've said before, the hours are different, but as the days go on I'm getting more used to it. I'm forming more of a "routine" now, but it's still weird getting home at 8pm or later.

The other night I went to the gym after work, and at almost 9pm I could still see the sun settings. It was a pretty awesome site actually. Half the sky was dark, and the other half was that orange-ish, blue-ish sunset look. It's not often you see a sunset like that in Rochester. (I wish I had Google Glass to easily capture some pics/video of it!)


Gym

I haven't been going to the gym every day, as I originally planned, but I have been going a couple times a week. The other night I did bench press again, and increased my weight by 10 pounds! I haven't increased my bench weight in a LONG time, and it felt good to be able to go up again.

Ever since the shoulder injury, I've been hesitant to increase weight on many exercises. However, I'm trying to increase weight when I get to 3 sets of 20 reps. Last week I did that 3 sets of 20 reps, so this week I went up 10 pounds and back down to 3 sets of 15 reps at the new weight. It actually felt GREAT. I haven't had a weight increase go so smoothly in a long time. I actually got done with the 3 sets of 15 and felt like I could almost keep going. (Notice the "almost")

My walk/run is also feeling better. I'm not really doing any more or less than before, I just feel more comfortable doing it. Same with the bike. I did 3 miles in 11 minutes the other night, but it was a more steady pace, instead of fast-slow-fast-slow kind of thing. I take all of that as good signs.

My body weight is pretty steady too, which is actually a good sign as well. I usually go up a few pounds after my first couple days back at the gym, but the steady weight (fluctuating less than a pound at each visit) means I'm definitely doing something right.


Programming

I haven't done a lot of programming recently. I did some last night, after getting a suggestion from a user, but for the most part I don't have much time for it right now. I know of at least 1 potential bug that needs to be fixed, but I completely forgot to even look into it last night before releasing the update.

I'm doing some pretty cool things as I get more acclimated to Java, Android, and other tools. My analytics are getting more and more detailed every release, telling me how my users interact with specific parts of my app.

Google is supposedly announcing some new tools for gaming at Google I/O next week. If that happens, it will help me network my Tic-Tac-Toe and Euchre games to other players. The Euchre game isn't even finished yet (I don't even have a fully working alpha/beta build yet) but these new tools sound like they will be AWESOME if/when they are released, and it will make my job much easier.


Conclusion

That's about it for now. Everything is still going well, and the craziness is about to die down soon (hopefully... after I move.) Then I can start looking forward to summer and the concerts, festivals, and other fun stuff that comes with it! :-)

Immediate effect of my new diet

On Monday, I posted that I'm going to change my eating habits. There were two major changes I was making:

1. Eating more often throughout the day (at least 5 times)
2. Eating more fruit, for a more balanced diet

I also said I was not eating red meat but that was just an acknowledgement, not a change. I have not been eating red meat for quite some time. Not because I think it's bad for you, or anything like that, more because I really enjoy chicken, turkey, and sausage.

I have been doing the 5 times a day eating now since Monday morning, and I went out and bought the fruit on Monday night, so that part didn't start until about 9pm Monday (I had some fruit when I got home that night.) 

So it has only been 3-4 days since I changed my habits, and I'm already seeing a lot of positive changes. I'm not sure which of the two dietary changes is causing each of the positive results (since this is not a science project I changed more than 1 variable, so it's impossible to tell the exact cause-effect relationship) but in any case, it's helping. Here are some things that I've noticed:

1. I have a lot more energy
1. This started immediately after changing to the 5 meals, but has become more noticeable with time. Therefore, it could be that the extra meals took time to fully effect me, or it could be a combination of both changes
2. I don't feel REALLY hungry anymore
1. When I start to feel even slightly hungry, I grab an apple or a mandarin orange cup, and the hunger subsides
2. The full feeling from the fruit lasts longer than most other foods, so I'm not hungry as often, and it sits lighter in my stomach, making me feel more comfortable throughout the day
3. My "normal, everyday" aches and pains are lessened (still there, but not as bad)
1. I have a lot of minor ailments (mostly from sports injuries... mostly cheerleading injuries) and for a long time those were something I would just deal with. I would expect my shoulder to hurt in certain situations, or my leg to cramp up. This isn't happening as much now.
2. This is NOT a result of going to the gym. I have been to the gym before, and usually these issues get worse for a small period of time before getting better. (Kinda like going to the gym and coming home sore, then a few days later being back to normal but slightly stronger.)
3. I think this is caused by a mixture of the two changes. The constant nutrition allows my body to continually heal itself, and the added fruit is providing nutrients that I was likely lacking before.
4. This could be caused by many things other than the diet as well.... but my allergies aren't quite as bad (like above, they're still there, just not as bad)
1. As above, this is probably due to added "juice" in my body. My immune system is probably using the extra nutrition to properly fight off the allergens, instead of causing a reaction to do the fighting. But it could also be due to environmental changes, like weather, or so many other things
5. I'm sleeping better
1. This one was completely surprising to me, but I realized that over the past couple nights I have been sleeping through the night uninterrupted. Before I would wake up 3-4 times throughout the night, now I got to sleep later (because I have the energy to stay awake) and I sleep better.

So there you have it. One "work week" on a new diet, and it's already causing a TON of positive changes.

The craziness continues

It's hard balancing work, healthy habits, social events, my programming side job, and normal every day events all at the same time.

Yesterday I didn't go to the gym. This decision was made for many reasons:

1. I had a terrible headache, due to the TMJ in my jaw
2. I was still very sore from previous days at the gym (mostly my shoulder/chest)
3. I wanted to get some programming done after someone recommended a new feature
4. It seemed like the day dragged out, and I just wanted to go home

I could go on forever with the list. But the thing is, it didn't really matter. I still feel healthy due to the diet change, and feel that I'm early enough in the workout that it probably shouldn't be daily. Yeah, the walking and biking could be. But the shoulder exercises, not so much.

Tuesday I did bench press instead of the hand bike. Bench also targets my shoulder issue, so it was good. Because I did that instead of the hand bike, I actually went 3 miles in 10 minutes on the bike, instead of 2 miles. The energy that I saved from switching exercises allowed me to do more on the bike, which worked my legs a bit more.

Everyone says "it's good to keep your muscles guessing" and I agree. But right now, I need something somewhat consistent to get me started, and the small changes between shoulder routines should be enough for now to "keep my muscles guessing".

On top of the gym, and switching to a healthy diet, and programming until almost 1am last night... I still need to find a new place to live! AHHH craziness!!

Plus this weekend is Imagine RIT, and I'm helping Joe move, and I'm going out with some people from my old job Friday night... and the list goes on.

Obviously finding a place to live should be priority #1, and I am going to do some looking around on-line in my free time, then try to visit some places before work one of these days. It's just pure craziness right now.