Difficulty Saying Yes

If you know me well, you'd know that plans in my world are always tentative. No matter how important the occasion, I have to have an exit strategy, because I can feel great one moment, and the next, feel horrible. 

And I'm not just talking seizures. Yes, seizures definitely cancel plans, but I'm mostly talking about my mood. These medicines I take create severe ups and downs. Sara will attest that the switch from yes to no can happen within seconds. 

I can best describe the "switch" as a wave of emotion enveloping every part of my body. It starts out as a simple tickle in my chest that quickly turns to the grinding gears feeling that I've wrote about in previous posts. 

I find myself pacing the apartment, and I have the insatiable feeling that I want to hit something with my hand, thinking that it'll stop the extreme anxiety. I've done this several times, not clear minded, and have broke bones and bloodied my hands.

This feeling scares me so much that I often cancel plans preemptively. I think Sara has come to expect that every plan we make, no matter how important, like a wedding, all the way down to weekly errands like grocery shopping, etc.

What I'd like to do is stand up to this "no" feeling and start filling my life with a more optimistic outlook on my everyday life. I tried this years ago, and I was pretty successful at it, but since that summer I've all but given up. 

The thing about saying yes to events happening in my life is it is extremely rewarding in a lot of cases. Yesterday was an example. I said yes most of the day and felt very proud that I was able to get out of the house and walk around the mall, followed by a sit-down lunch, then stayed awake to watch a movie with Sara, then go on a quick grocery shopping trip way later than I've been out in weeks.

But yesterday I did know my limits. After shopping for a couple hours at the mall and lunch, I had Sara drop me off at home for a nap so she could finish the shopping that she wanted to do. After the nap, I still felt great, but as I said before, my state of mind could change in seconds. I pushed through the fear and ended up having a great day, (although I was constantly asking Sara to tell me that I was doing a good job fighting the feeling to say no to our plans, no matter how simple they were). 

My point is that I'm going to try to say "yes" more in my life. I feel like if I do this enough, maybe the fear of something going horribly wrong will subside. 

Don't get me wrong, I could feel great all day and say "yes" to everything all day, and still have plans struck down. This happened two weeks ago. I came up with the idea of taking a walk in the nice weather and ended up having a pretty bad seizure while on the walk. I can't stop myself from thinking what would've happened if I was on that walk alone. 

So, starting with this post, I'm going to make a conscious effort to say "yes" to the events flouting around me.

Wish me luck.

***

An example of the emotional switch I'm talking about happened while writing this post. I'm listening to music on my headphones and a song that really means a lot to me started playing and I had to say "yes," and push through and finish writing.

Epilepsy Tech & Innovation

This post is part of the Epilepsy Blog Relay™, which will run from March 1 through March 31.Follow along and add comments to posts that inspire you!

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My topic for the blog relay is epilepsy technology and innovation, and as a VNS patient I'd like to give you a little update as to how the VNS has worked out for me after five and a half years of treatment.

The first thing I would like to point out is that the VNS hasn't stopped or really lessened the amount of seizures that I've experienced, but I would say it's been a success because I feel like it lessens the intensity of the seizure and helps with recovery time after a seizure.

As of right now, my battery is at about 2/3 capacity... much more than I would've initially expected. I think I was told that I'd need to change the VNS battery every 5-8 years, but it looks like my battery will last a lot longer than that, which I'm grateful for.

My wife and I attended an epilepsy conference in Chicago, and there were many options for someone who's seizures are not well controlled with medication alone. We just glanced over the booths to see things like the deep brain stimulator, etc., so I can only speak for the VNS because it's really a part of my everyday life.

My VNS is on for seven seconds and off for ten by itself, without swiping the magnet over the device to double the "dosage," which then keeps the device on for one minute. 

When the VNS is on, I feel a pulsing tickle in my throat. I've gotten used to it now, but there are some other side effects. 

The one side effect that has most impacted my life is that I now have to wear a sleep apnea mask. I may have been just on the verge of needing one before having the VNS installed, but now it's a necessity. It's a pain to have to use a cpap, but I've found that I do sleep much better.

I wouldn't hesitate once about having this VNS surgery... with the battery changing surgery and all. I've heard that the new batteries last longer and soon my doctor will be able to log on to my VNS while I'm at home to see it's status and make changes if needed.

If you're considering the surgery and would like to know a little more about my experience with the device you can leave a comment below and we can talk privately.

Thanks!

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NEXT UP: Be sure to check out www.cf-epilepsy.com for more on Epilepsy Awareness.

When You See Her, Kiss Her

Monday was spent at Northwestern Memorial Hospital again. This time to see my neurologist. The appointment went ok. We scheduled another EEG for April. They're not fun, but can yield a lot of good information for my doctors.

To get to the hospital, I usually ride with Sara to the city and stay at my sister's apartment, which is just a few blocks from the hospital, but she was unavailable, so I took the Metra train which is about a mile from my apartment. Side note: yesterday was a nice sunny day for walking, but damn I'm out of shape! I thought I was going to die when I finally reached the station. Once on the train, I was able to relax.

The plan was I would take the train to the city, and I would hang out there for an hour before Sara left work early to pick me up from the station and drive us to the hospital. Ogilvie is a huge station with a nice food court for me to just sit and relax. So that's what I did. I bought a bottled soda, and a snack to hold me over until after the appointment when Sara and I would have time to eat a late lunch.

Once I had my snack and soda in my hand I found a two seat table where I could just play on my phone for an hour while I waited for Sara to pick me up.

The station was very busy, so I wasn't surprised when a police officer sat at my table during his break to eat his lunch. I mostly ignored him because, to be frank, I was a little uncomfortable sitting with a stranger, but I guess that's the way things are done down there.

Once he was done eating, we started talking. And let me tell you, Mike the police officer really likes to talk! So that's what we did. Mike talked about his day, what it's like to be a police officer (his duties at the station), and just life in general.

Of course, we stumbled into the topic as to why I was visiting Chicago yesterday. I told him a very watered down version as to why I was there, and that I have epilepsy, and was there to see the doctor. I told him about my seizures a bit, and then we got on the topic of Sara picking me up from the station to take me to the hospital, so we could be in the appointment together.

Mike gave me a lot of good advice. He was an older police officer with a lot of advice to offer. He reminded me of my dad, who is a retired cop. We started talking about Sara, and he looked at me as seriously as a cop could look at someone and said, "you know she loves you very much." I agreed.

Mike has seen a seizure before and said it was one of the scariest things he's seen as a cop, (that's saying a lot!), and that for Sara to have stuck by my side, fighting epilepsy, was a true test of her love for me. Again, I agreed and told him that, although I've never seen a seizure, I've been told that they are very scary. He even knew what an aura, (seizure warning), was. Pretty amazing, if you ask me.

He gave me some instructions for when Sara picked me up at the train station. He said that when I get in the car, I should look at her, tell her how much she means to me, and to give her a kiss on the cheek. He said it's not about getting the chores done,  (how did he know that I was struggling with that?!), or how much money I make, etc., it's just about letting her know that I appreciate her and love her the same way she loves me. 

So that's what I did. Once in the car on our way to the hospital, I told her about my encounter with Mike, and once we reached the hospital and got out of the car, I kissed Sara in the cheek and told her how much she means to me. 

This post is basically to thank Mike the police officer, and reiterate to Sara that she means the world to me and I wouldn't have the strength to fight epilepsy, and all the shit that comes attached to my seizures without her.

So, thanks to Mike, and most importantly, thanks to Sara for taking a half day of work off so she could fight traffic to pick me up from the train station, then sit in another doctors appointment.

I love you, Sara, and I'd probably be living under a bridge somewhere without you!

The rest of the day went good, I was in a great mood, we ate a good lunch in the city, and headed home. I'm only up so early to write this because as soon as I left the train station, I was itching to write about my experience with Mike. 

What a great day.

(10,000 views on my blog! Thanks to all of you who have supported me!)

Rusty Gears

Every morning around 10am I get this funny tickle in my chest and stomach. I always describe it as rusty gears in my chest struggling to turn. This could be a couple obvious things. One could be that my body is craving medication, and this is usually the time when I take them. But the gears feeling sometimes comes without warning and not during the window of time where I'd be taking my meds.

This is not a conclusion, but one thing I always think about during this time is going to work. 

Nearly everyday I watch Sara get ready for work and we talk about whatever is on the news that morning... weather, traffic for her commute, or just headlines of the day. We used to do the same thing when I was still working, only I was obviously getting ready to go to work, too.

I usually try to relax myself as much as I can. I fill my head with positive thoughts by watching relaxing YouTube videos or playing records. TV sometimes helps, as well.

Could it be that these gears are my body telling me that it's not natural for me to be as complacent as I have been? Could watching Sara in her daily routine spark something inside of me that really wants to go with her; a feeling not too far from jealousy?

Whatever or wherever this feeling is coming from, it's been happening for years by my count. I usually just take my meds like always and slowly wait for it to pass. But I will admit that the passing of this feeling after I take my medication could just be me getting very tired from the meds, and the gears are just masked by tiredness.

Where ever these feelings come from, they are very annoying and some days strong enough to outlast any attempts to block it. Then what do I do? 

That's the big question for all of my doctors. That's really the only place where I can voice this problem and receive an answer. So far they haven't been good answers because despite trying to go on more medication, the gear keep spinning, and they will, I believe, until I find somewhere to put myself that isn't within these four walls.

Guilt

Lately I've been feeling this tremendous guilt feeling. It starts as a tickle in my chest, which I describe as rusty gears turning in my chest. After that I feel a wave of depression and what I can only describe as guilt... It seems to be the only adjective I can use to describe it to Sara and my doctors.

If I leave the feeling alone and just let it play out, it only gets stronger and stronger. Soon I find myself actively trying to find things in my life, even years ago, to feel guilty about. If I let it go far enough, it lands on August of 2008... The time when I had my first seizure.

I now notice this feeling right when it begins, and we've (Sara, my doctors and I) come to determine that my blood sugar is too low. Like I didn't eat enough when I take my meds.

So far, eating while taking an emergency medication meant to help me after a seizure kills the feeling right away. 

I'm writing this now mostly for myself because I'm the only one right now who can notice it starting to happen. It's only after Sara asks if I'm ok, or how I'm feeling do I divulge this information.

This is just another example of how strong these medications in my body can be. They trick me into thinking dark thoughts, like extreme guilt. 

Isn't there an epilepsy drug out there that can stop seizures while making me feel good inside? Instead, I have to take extra medications to bring me back to normal.

I was watching tv with Sara tonight. A very depressing documentary series, and now I'm wide awake thinking about it. I know I'll just lay in bed staring at the ceiling for hours thinking and feeling too much to sleep. 

I took my evening meds, and just took an emergency med to help me relax and hopefully fall asleep comfortably and without my mind racing.

They're kicking in now. My body feels heavy and I'm starting to to feel very tired. This is a good thing. Hopefully someday I won't have to feel this way anymore, but for now I'm having to combat strong seizure meds with very strong psych drugs. It's something I wouldn't wish on on anyone because it's absolute hell.

Milwaukee Holiday

2015 went out like a lamb. When I say that, I mean my mood was extraordinary! There were some seizures peppered in there, but my mood had been most important to me lately. It always should be, really.

We spent Christmas in Milwaukee visiting Sara's family, and New Years at home with a homemade lasagna! Sara and I both agree that our time closing out 2015 couldn't have been better. We got to spend some quality time together, and we didn't get sick of each other once! :)

We spent Christmas at her uncles empty condo, (he spends the winter in Arizona), and so that meant Sara could make cookies, and I felt free to get up and watch tv or read whenever I wanted. I haven't been sleeping too good, so that was a bonus.

Our Christmas' went well. We gave and received great gifts, and everything went pretty smoothly. No drinking for me, which we now know is key to my mood stability. I should've known this years ago, and probably did, but ignored it for some time.

The new year saw some seizures, but again, my mood stayed stable, and I was able to make it to 11pm to watch the ball drop in NYC, before heading off to bed. I seriously couldn't stay awake one minute longer! Sara's lasagna was delicious, as always, and so far 2016 has been ok.

I found a new supplement called melatonin that has helped my sleep, but I still have some work to do in that department. Hopefully nothing too strenuous. I really don't mind having to get up for a couple of hours in the middle of the night. It's quiet, and in some ways relaxing. I just know I need the sleep to help with seizure activity.

So, so far, 2016 has been in like a lamb, as well. Let's just hope this year is a year of change for the better, and a path to a better, simpler life is laid out before us.

Happy new year to all of you!

To My Mom

Mom, let me first start this post by telling you that I love you. You've seen the absolute worst of me and the absolute best of me. I'm your son, your first born child, and I want you to know that I haven't, and will never forget that.

When I first started having seizures, it must've been unbearable to watch one of your children go through so much pain. Pain, unfortunately, I still feel to this day. The seizures haven't stopped and neither has your strength of mind in knowing that someday this thing will be beaten.

I watch Avery, your first grandchild, my niece, and I think about how I was once that small; needing your constant attention and love. You showered my with both. I had a great childhood, and I think your daughters would also agree.

To see little Avery as myself, and to foresee the path I would have to walk as a person living with epilepsy... it's a thought too difficult to grasp. Especially as a parent, I'm sure.

Our relationship is strained, I know. The last couple years have been hard, but you're my Mom. The only Mom I want or will ever have. We both have our tremendous flaws, as all people do, but I hope that in the coming months, and days like today, we can move forward and focus on the very best of what we see in each other.

I'll do a better job letting you know how my weeks are going; seizures, doctor appointments, or just the general stress of living the life I lead. I know you'll offer me love, support, and advice... all things that a child looks for in a parent. 

I love you, Mom. Merry Christmas.