Everyday Seizure

I've had a seizure everyday this past week, sometimes two. I'd like to say the streak is over but they've been coming at this time of night or just when I'm about to fall asleep.

We've had a lot of stress in our lives lately and that is probably the culprit. It's funny, a seizure. I tried to explain a seizure to Sara's Dad over the holiday and it seemed like an experience one would pay for.

I told him that it starts out like a dizzy sort of dream where objects around me seem to come to life. There are literally voices from my past in my head, memories from my childhood dance from one side of my brain to the other. I can hear my Grandpa talking to my Mom and I can picture watching a movie in front of the TV from when I was young. Modern-style memories can jump in there from time-to-time, but I mostly remember (what I can from when the seizure ends) scenes from being a child.

Then the strong side of the seizure starts. The part when I feel as though the memories are haunting me instead of fluttering around inside. All the faces from my past look directly at my face and I feel them staring inside me and it's quite painful. Once this ends, I shoot back to a psudo-reality where I see Sara with my magnet in-hand, swiping it across my chest every couple seconds and her asking me if I'm ok. I can usually respond with a nod yes or no, but my language is a mess.

No one enjoys a seizure but for a split second I wish that everyone around me could experience the aura side of a seizure so it wouldn't be so hard to interpret.

Stress & Seizures

I've been dealing with a quite a bit of financial stress the last couple months and it has all culminated in the last week or so. I'm on disability for my Epilepsy so we're on an already tight budget and it's horrible that "people" would try to take advantage to someone suffering from an illness. That's all I'll say about that.

I know a thing or two about stress and seizures since that is a major trigger for me. The thing about a stress seizure is they open the door for stronger seizures in the days and even hours following.

I've been very depressed lately, and I feel like Sara and I need a break. By a break, I mean a bit of good luck; luck that most of you would just consider a good day.

This is a short entry, but I feel as though I needed to write, but I'm afraid of saying too much.

Sisters

For the last couple of weeks I've been dealing with a middle and inner ear infection. The doctor says is could be a side
effect of the IVIG, which I wouldn't be surprised since I seem to have gotten every other side effect of the treatment thus far.

It's been especially tough since I had the infection over the Thanksgiving holiday. I haven't really been able to chew or really close my mouth all the way. Tough.

As far as seizures go, I've had just a couple since my last post, one being just minutes ago. It seems as though I get the urge to write just after I have a seizure. Seems appropriate.

The Thanksgiving holiday was great, despite being sick, my family always finds a way to have a good time. Here in the US (to all of my foreign friends), we have a huge shopping day just after Thanksgiving called Black Friday. This year Black Friday started early, on Thursday, Thanksgiving night. It was awesome just to see all the crazy people in the stores searching for "deals."

On the Wednesday before Thanksgiving my sisters and I stayed up until midnight because we knew that most of the online deals would start the minute of Thanksgiving on Thursday. Both sisters ran to get their computers at 11:45pm that night in anticipation of midnight, but we soon realized that it was already midnight on the east coast and the sales had already started!!! Target didn't have their sale start until 6am, so I set my alarm! Hey, I have people to shop for, too!

It's so much fun hanging out with my sisters because we don't get to see each other very often as the live a distance away. So, when we do see each other we joke and talk about old times and gossip like a bunch of school girls... hilarious. The best part of all of it is we never get on the subject of my health. We stick to the good news... always. Even when the visited me in the hospital a month back, we just laughed and tried to lighten the mood.

I posted a picture of them above when I was in the ICU, all smiles even after hours of stress. They know how to make me laugh even in the most trying of times. For that, they're more than just family members, they're my best of friends.

Post-Seizure Post

I had a pretty strong seizure about 30 minutes ago and I'd like to see if I can describe these last few minutes.

Right now, I'm searching for every letter on the keyboard; taking about 5-10 seconds to type each word. I'd like to mention that I'm relying heavily on spellcheck and a lot of the words I'd like to use to explain what's going on might as well be French because I'm having a hard time recognizing them.

I took a couple Ativan, which is an emergency medication. I'm feeling it absorb into my blood stream and I have to say that it's a pretty nice little high. It's a very sleepy high, but I feel warm all over and I can't really feel my feet.

I would consider the seizure strong because the whole right side of my body went numb and I'm pretty sure I lost consciousness. By that, I mean I could've been technically awake, but I'm missing a good chunk of time in my memory of the last hour or so. 

***

I've spent about an hour writing this post, so far, and I'm feeling a little better. I'm starting to recognize words as I type them. Note: I'm going through the first half of my post and fixing grammar errors, because I get self-conscious about that sort of thing. Vain, I know!

***

I called Sara just after I realized what a phone was (no joke), and I'm pretty sure I was still having the seizure because I don't remember quite what I said to her. I remember apologizing a bunch, which I tend to do after a seizure. My face feels puffy, so I know I had a good cry. I know that may sound weird to not remember whether or not I had such an emotional moment but that's sometimes what happens for me after or just at the end of a seizure. Especially as bad as the one I'm recovering from.

I know I'm going to look back on this post later today and not remember writing this so I want to document as much as I can while I'm still in the posticle phase (seizure hangover).

I want to thank everyone who reads this blog and I want everyone to know that I appreciate their support. Without being able to write this for all of you to read would be devastating to me.

Crying again, dammit.

Signs of Weakness

I've long considered Epilepsy as a sign of weakness. Who wouldn't? I've had a lot of my freedoms taken away from me, freedoms that most would consider commonplace for a man my age.

Through all of this I've had a strong support system of family and friends. Just last week, a friend from college commented on a blog post that I'm "way stronger than I even know." It's comments like these that keep my pen to paper. I appreciate my readership. I look everyday to see if my blog has gotten any "hits," and everyday they're in the double-digits. So, overwhelmingly, thank you.

Epilepsy as a sign of weakness is an easy post to write because I'm so familiar with this feeling, but if I thought of my strength I probably couldn't get past the first sentence. I can only say that I've come a long way with little results, my body is in shambles, but there is still air in my lungs. My Dad would say something like that.

I remember last year after being taken to the ER in Beloit, I was coming out of the Ketamine coma and all that came out of my mouth to the Police Officer was accolades of my Dad and how I knew I would never have his courage or strength. My sisters and I think of him as a super hero. He fought in a war, was a cop, and survived a terrible car accident all before he hit 40. I mean, he has the scars to show for it, but his positive attitude is what makes him our hero.

Maybe I do have a little of his courage and strength in me and that's what makes me his son. I know that there's a long, winding, muddy path in front of me but if I look back at these past five years, I'd see no path at all, just a pit from which I have just climbed out.

Holiday Air

Last night, Sara and I went to one of our favorite places to go during the holidays, the LaGrange Antique Mall. During this time of year all the dealers bring out their vintage Christmas decor and trinkets and it's fun to walk around and visit the memories of our childhood. A lot of the items are from the 1940s-1960s, but because a lot of these types of items are handed down, we had them in our homes. I grew up in a family where Christmas was celebrated immensely. We had all the holiday lights, toy trains, tinsel, the works.

Last year during this time, Sara, me and my family were traveling back and forth to Mayo Clinic where we celebrated both Thanksgiving and Christmas in hospital rooms and hotels, so we didn't really get a chance to really decorate or put up a tree. Plus, we were moving to our new apartment which made the whole season sort of a wash.

I can't say for certain how this year will go because things still seems to be pretty stressful, but it was just nice to go somewhere quiet, like the antique mall, and stroll around laughing and sharing memories as we found them.

While I was there, I found an old Leica point-and-shoot camera in great condition and I just had to have it. It was cheap and I knew just what I could do with it. If you know me, you know that I'm a "collector" of these types of simple cameras. I just love the look and feel of an old 35mm camera, and the shots I hope to get out of them. I have a bunch of film just waiting for the time when I can bring the camera to my eye.

Every time I find one of these cameras or rifle through my collection, I think about what new event will spark the photographer inside me to finally come back to the surface. I loved shooting, and still today I love the concept of photography, but I just can seems to get myself out there and take photos.

Already, I've cleaned the camera I bought last night, found a battery and downloaded the manual off the internet. I've been taking practice shots with no film all morning, so I know every feature once I decide to slip the camera into my pocket and step outside the door. Right now, I'm writing in my journal to plan special events in which I will bring the camera. Maybe this will help me get over the writer's block-type hump I seems to be having for photography.

Maybe breathing some of holiday air from last night will remind me of when I was a kid and Mom would have her camera ready to document every present, every smile and every silly moment we had during the holidays. Maybe this is the year Santa will finally bring me some inspiration.

Cold Sweat

On Saturday, I had a seizure just before laying down to rest. I usually put my phone and VNS magnet on my nightstand, and just before the seizure started, during the aura phase, I was aware enough to grab the magnet and swipe it over my chest to activate the device.

The seizure was on the strong side so I laid in bed until I felt ok enough to move around. I knew that I had to call Sara to let her know what happened but, as I was in the postictal phase of the seizure, I was confused and couldn't find the phone that I set on the nightstand.

The concept of a phone and what it looked like was fuzzy and even though the phone was still on the nightstand, I looked at it and told myself that it wasn't there; I had to search the house. I, quit literally, floated around the apartment searching for the lost phone, in random places like in the fridge and under the chairs until I found myself back at the bed, staring at the phone.

I looked at it for a good couple of minutes before picking it up and asking myself, "is this what I'm looking for?" I fiddled with the phone until it turned on and tried to figure out why I was holding it until the memory of making a call came back to me. It was then that I started to have a fever sweat and dry-heaved from the nausea that sometimes follows a seizure.

I finally made the call to Sara and laid back down. I took an Ativan, a seizure rescue medication, and drifted into a stoned, staring-like state. Sara was home by the time I fell asleep and when I woke up it was already dark. I didn't remember the seizure or why I was laying down at first. I had to search my memory and wanted to ask her what happened but before the words came out of my mouth, I remembered.

I mentioned this in my last post. My seizures come in waves. Once the "seal is broken" for one seizure, I know to expect several more. This might turn out to be a week where I'm either here at my desk writing or searching the house for an item that was never lost.