12/18/13

There's a slight confusion for someone who's in the hospital a lot. By that, I mean there's a part of me that misses the security of being in a safe place that, if I have a seizure, I know there's people to help me, and give them up-to-date information on how I'm feeling, and get information from them on how I can personally treat my symptoms.

I've written about this before, but there are days when I feel that a seizure is possible (my Epilepsy Twitter friends will understand this feeling). It's like a twitch in my brain; like a split second of my life is taken from me. Imagine someone taking to you and one of the words is missing from their sentence. Along with that is a dizzy sort of haze. It's not like what I describe as an aura, just a slight twitch.

A couple days ago, Sara and I were in a store. We split up to look at items in our respective departments and I was looking at watches (I'm on a watch kick again) and while I was looking at one watch, I had the twitch and all of the sudden I was looking at another, different watch. This happened several times.

I can't explain why I have these days, but I can guess that it was because it was hot in the store and it was very busy due to the Christmas season. Sara and I both know that temperature and stress are a couple of strong factors for me having a seizure, so it's no surprise that I was having these "seizure symptoms."

I didn't end up having a seizure, which is obviously good, but I know that in the next couple of days, I should be cautious.

***

I've been thinking about my style of writing lately, and I've come to understand that I write the way one would have a serious, spoken conversation. I have a friend who's a writer and after reading some of his work, I can tell the difference in the way we approach writing. I don't necessarily think my style is wrong, given the fact tat I'm not a trained writer, I just hope, and wish to learn a little more about proper writing style.

There are trained writers that write with a similar style, I know this, and I think a conversation-style is easier for most people to read, but I hope in the future, my style will become a little more polished.

***

I'd like to address my last post about our willingness to have a child. By no means are Sara and I trying to have a child at the moment or in I foreseeable future. I was simply stating that I think it's wrong for someone in our situation to be denied the opportunity.

I have a Twitter follower who was recently cleared to have a child by her doctors and it has got me thinking, and, to be honest, it has been weighing on me... us. I will become a father someday. I know I'll be a good Dad. It's simply a matter of health and priority. I want my child to come first, then my health. I would being doing my baby a disservice to bring him or her into this world and not be able to give it my full, undivided love and attention.

A Child

Since having Epilepsy, I think Sara and I have put our desire to have a family on hold. It's not like we were exactly ready to start a family in 2008, but the option was always on the table.

Now, it's a different story. My IVIG treatments are over and the doctors seem to want to work on my medication "mix" for now... something I've been gravely afraid of since I've had so many problems in the past. I have been to four different hospitals since 2008 and Mayo Clinic is the one that we both seem to trust the most, because they are willing to take the appropriate risks.

By that, I mean, they needed to see how my brain worked by having me off my medication in the EEG last November and they have at least tried to have me in various treatments before going ahead with new medications. Don't get me wrong, I trust NW, but the years we've been with them haven't exactly been the greatest, psychologically.

I wanted to officially state in this post that I want to start a family, but Sara and I are not exactly sure if we are "allowed" to have a baby, given our current situation. I don't believe that anyone should be unable to start a family, but I don't want to bring a child into a world where they are not number one on our list of priorities.

This is a post where I'd love to hear my reader's feedback. I believe Sara and I are good people who deserve the opportunity to start a family, and everyone around us would agree, but we can't get it out of our heads that there may be some people out there that would disagree.

I love my wife and I love my family. We have supporters, and I know the baby would be welcomed with open arms... literally. Our therapist said to us this past week that there will never to a perfect time to have a baby. I believe her, and I know I'd be a good Dad. I'd most likely be a stay-at-home Father, and I think... No... I know I'm up for the challenge.

Life... bring it on.

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.