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.

Getting Out

It's late on a Sunday night. I just finished the final chapter of a book I've been reading and I thought I'd write a little about today.

Being a Sunday, Sara and I usually have some time together which has been a rare thing because during the week, she gets home and there are usually only a couple of hours where we see each other before I have to take my medicine, which makes me very tired, and I go to bed relatively early. 

It has been, as a personality trait, hard to get me out of the house to do anything that isn't related to errands or doctor appointments, but Sara tries hard to get me out of the house, even for a couple of hours, to do fun things.

I usually complain that I'd rather just stay home with her or do something routine like go to a mall and walk around, but she likes to try new things, which can drive me bananas because I've been so stubborn lately. Lately being the last couple of years.

Today she wanted to go to an craft fair at the Chicago Irish American Heritage Center close to the city. After a lot of complaining, I finally got in the car and we went.

As soon as we got there I had a little seizure. By little, I mean it felt like I was having an aura that never fully turned into a seizure. I used my VNS magnet and continued shopping and looking around the booths and talking to people. 

Slowly, I started to have a good time, and became very excited about being there, and have gotten out of my comfort zone for a couple of hours. This, as we've discovered over and over, is usually the case. I complain like hell at first, but after it's all said and done, I'm very happy to have had the experience. I don't know why I'm like this.

This might not be a particularly deep and emotional post, but more of a written thank you to Sara for putting up with my shit at first, knowing full well that I'm going to have a good time even though I've fully convinced myself before even stepping foot out of the house that I'm going to hate every second.

So, thank you to my darling wife for being as stubborn about getting me out of the house as I am about staying in the house. Without you, I would've seen all the amazing things I saw today and talked with some very interesting people... especially the guy who gave us a very heartfelt personal tour of the Chicago Irish American Heritage Center's museum... He was so overcome with emotion about talking about certain items that he shed some tears. Whoa.

Again, I know I can be a stubborn SOB, but I can also be very grateful. I have you, Sara, to thank for that. I love you...

Thanksgiving

Even though the Christmas season has officially begun, I wanted to take a moment to look back on this past thanksgiving holiday, and how well it went. We ate great food, and were surrounded by great people.

First was the Smith thanksgiving from Wednesday night until Friday. Sara, my sister Jenni and I drove up from Chicago to Beloit, Wisconsin, my hometown, to meet my sister Julie, her husband Ryan, and their new baby Avery. We were then joined by my Mom and Dad. The food was amazing, and we laughed and and shared memories and made new memories to be shared in the future. We had Avery there, a new member of our family, to giggle with and experience what it was like to have a new seat at the table. She was adorable. I even held her, although I was scared as hell!

Sara and Jenni did a little shopping that night while I stayed at the house to rest. Apparently they got some great deals, which is always fun.

We left Friday morning so we could go home and take care of our cats for one night before Sara and I headed to Milwaukee to attend her family's thanksgiving. 

Once in Milwaukee on Saturday afternoon, we again ate great food and shared stories and played games. We stayed at her uncle's empty apartment as they spend their thanksgiving in Arizona.

Once Sunday came around it was time to come home, but first Sara and I had breakfast out at one of the local diners to spend some "us" time together. It was fun.

The best news.... No seizures! I was very nervous that the weekend would be ruined because I had been having a bad couple of weeks leading up to the holiday, but my doctor had me on extra medication to curb and potential problems. The meds made me a little sleepy, but everyone was ok with me excusing myself to rest when I felt too tired.

I wanted to share that this was the first thanksgiving holiday in three years where I wasn't sick. In 2012, I spent my thanksgiving in a hospital bed at Mayo Clinic for an EEG. In 2013, I had a horrible ear infection, and in 2014, I broke my ankle and was in a cast. This year, all there was to report was me being a little tired.

I wanted to tell my readers that I'm thankful for you, and appreciate all of the support and positive feedback that I've received. It's nice to know that I have so many great people on my side. I wouldn't be the same person without you!

Now, bring on Christmas!

New Outlets of Support

This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!

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New Outlets of Support

I've been volunteering with the Epilepsy Foundation of Greater Chicago and attending many of their events, and I've been overwhelmed with joy at how much support other epilepsy patients offer each other. Not just the patients, either. Their families, friends, co-workers, the list goes on.

I've also, as many of you know, have met so many great people through social media sites like Twitter. Epilepsy patients and their families and friends all come together to ask questions about everything from medications, seizure experiences, work related issues... just everything across the board. And you'll get responses, too. I was just talking to a man who was recently diagnosed with epilepsy and he had so many questions for me that I was more than happy to answer because I know how I felt when I was in his position. I only wish I would've taken to Twitter for support as quickly as he had. Kudos to him.

The point here is, as an epilepsy patient, you have to have a solid support system in place for you to get through these tough days, and we no longer have to look just within our circle of family and friends (although I believe this is essential), we have so many new outlets for support. I have the Epilepsy Foundation of Greater Chicago, Facebook, Twitter, and the contact info from the people I meet while volunteering to start an email chain of support.

Let's all stick together. Epilepsy is a long, winding, and rocky road. Why not have others there to cheer us on throughout this journey?

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NEXT UP: Be sure to check out NEXT POST for more on Epilepsy Awareness.

She Landed

Well, the day has finally arrived. My good friend Jacqui from the UK is back in town for a visit and I'm gearing up for a great week. We have some loose plans, but I'm mostly excited that I'll be able to talk to her face-to-face instead of through text and FaceTime.

We've been friends for about a year now. She first reached out to me through Twitter to ask about the VNS, as she was considering the surgery. It turns out it's not an option for her, but we kept emailing, texting and talking via FaceTime.

We quickly realized that our lives strangely coincided when it came to epilepsy, then our friendship grew to the point where we found out that we were similar it many more ways. Our personalities really did mesh well together. We hold nothing back about our lives. There really are no secrets... It's like she's my sibling, only 4,000 miles away. Truly a strange thing considering we come from pretty different backgrounds, and cultures.

We talk about everything. Epilepsy, family, work and the lack thereof, language, culture, food, and tea vs. coffee. The list goes on and on. I'm still baffled as to how our friendship grew so quickly. Now we do not have a day where we don't shoot each other at least one message to each other each day. I look forward to it everyday, and I will admit that now my day wouldn't feel right if I didn't talk to her.

Sara, and everyone else in my life knows about her and our closeness. They too are so happy that I have her in my life. Not just because we support each other epilepsy-wise, but also that I have a best friend, even though she's so far away. 

This is the second time in under a year, months actually, that she's been able to make the trip to Chicago. I know I'll be able to visit London someday soon, but I'm so happy that she's had the time and resources to visit Sara and I. 

This week we're going to walk the city. Talk, shop, visit museums and eat. I'm sure there will be a lot of laughing and crying, both of which I'm looking forward to.

I know that you're reading this Jacqui, and I want you to know... I want everyone else reading this to know that you've changed my outlook on not only epilepsy, but life itself. I thank you for that. This week is going to be great. A great week with a great friend. xx