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

I See You Complaining

Like a lot of people these days we spend a good amount of time online checking status updates, tweets, eBay listings, shopping, the list goes on. 

By now you probably all know that I have quite a bit of time on my hands with being on disability, so I probably spend a little more time on Facebook and Twitter than the average person. It's a nice way to stay in touch while being surrounded by these four walls.

I see a lot of positive posts, articles, funny videos, etc, but I also see your complaints. Yes, parking in the city in a bitch, coffee is way too expensive, your trash didn't get picked up on the right day, dating has become impossible for anyone over 30, the list goes on.

What I really want to see more of is people posting things that they're thankful for. Your kid is doing good in school, you found a twenty in a coat that you haven't worn in months, my cancer is in remission, I haven't had a seizure in X amount of days or, damn you look good in those shoes! Big or small, positivity matters.

I'm posting this now because my battle with Epilepsy has been a complete disaster. Meds don't work, but the ones that do cause so many negative side effects that I find myself at a crossroad... seizures or constantly thinking of harming myself. Which would you chose? That's what I thought. 

I chose the harm myself road a few times, and at least with a seizure you're knocked out and you don't feel anything until you wake up, and that is usually a headache or bit tongue.

My point is this: If people like me have to come to crossroads like these, then surely you can come to your own crossroad and decide to spread some positivity to those around you instead of gathering all the meaningless negativity that happened to you throughout your day and sharing it for the world to see, and most likely...... ignore, unfollow, and unfriend.

Stepping off the soapbox now.

Klonopin

After a couple weeks of strong seizures while still recovering from shoulder surgery, my doctors thought it would be a good idea to put me on a low dose of Klonopin for an extended period instead of a higher dose which they were using just to break the seizure streaks I've been having as my seizures tend to group for days at a time. 

I also started an antidepressant called Lexapro on a daily basis. All of these new medications seem to be working as I'm in a good mood while I haven't had any signs of a seizure in just about a week, which is about as long as I've been taking the low dose of Klonopin. A week doesn't sound like a long time, but with epilepsy you tend to feel when you're primed to have a seizure. Bad mood, body twitches, headaches, anxiety, depression... They all are signs that a seizure is inevitable.

For the last week I've been waking up in the morning with a strong anxious feeling, but once I take my morning dose of medication it all goes away in minutes. I've been looking for this combination of medicine for months, maybe even years. There are very little side effects so far. In the morning I'm awake and happy, and at night I'm ready to sleep and for the most part, sleeping through the night.

I needed this for my arm. I've been very worried that the seizures could hinder it's healing process. After the few seizures I've been having I could tell that if I didn't have the sling on, my arm would extend and stiffen (which is normal during a seizure), and it has stopped it from moving out of place.

This comes with perfect timing as I get the sling off next week. My arm is feeling stronger everyday and I find myself moving it in ways that I haven't been able to without pain even a couple weeks ago. Right now things are looking good. A statement I haven't made in months.

Finally, Work

After two years being stuck behind four walls, I think I'm ready to finally re-enter the workforce. My arms will be both back to new and hopefully my spirits will be too.

Obviously, there are going to be disappointments. Maybe two or three jobs that I go through as a person with epilepsy, but I know that there's something out there for me.

I'm trained in graphic design, but I feel like working with others with epilepsy could be my true calling. Whether that be at the Epilepsy Foundation, a hospital, or who knows where else. As a person living with epilepsy, I feel like I can give very good advice on how to go on living a daily life with this debilitating disorder.

As far as graphic design goes, I see myself working in the non-profit sector. I just feel like helping others is the best way for me to live my life to the fullest.

Money is obviously an issue. Sara and I have been living hand-to-mouth since I developed epilepsy, and it's only getting worse. I don't know what to do. Money is money, I don't need much but I need enough to pay our bills on time and take some of the pressure away from Sara.

When I was let go from my last couple jobs (the most recent one was because of the seizures), it hurt me deeply and I still haven't quite got over that. Hopefully, even though setbacks are inevitable, I can put them aside in my mind and charge ahead.

My arm will be healed by the end other year. If anyone has and good leads for me, it would be greatly appreciated.

@WGNMorningNews

Let's face it, news is depressing, but I found an outlet for receiving depressing information in a way that by the end I'm smiling. How is this possible?

Every morning I watch the morning news on WGN in Chicago. I've been watching it for years now. At first, I would watch it while getting ready for work. I would have the TV on while eating breakfast, taking a shower, and brushing my teeth. As I was getting ready, I would run around the apartment occasionally stopping to hear about the weather and stories of the day.

Then one day I started having seizures. This is when I went from a casual viewer into a outright fan. 

Epilepsy has put my career as a designer on hold for what seems like an eternity now. I look for structure in my day at home and I find that the news is an integral part of my morning, the structure I so desperately need now that my days are spent at home.

Now I wake up with my wife and feed her the news of the day (most importantly traffic now that she works in the city) while she runs from room to room preparing for her long day at work. The difference is, between all of the bad news that is offered to me on a daily basis, WGN finds a way to break this kind of news up with segments that lean on the lighter side of life.

I need this lighter side of the news because my life with epilepsy has been a whirlwind of emotion. I find myself not only having seizures, but also the psychological side effects of the seizures and epilepsy medications. I've had seizures during their program but have had the seizure end with a laugh. How is this possible?

The most depressing place to be while watching their program has to be the hospital while undergoing an EEG of my brain. (An EEG is basically a 3-7 day test where doctors glue wires to your head and provoke seizures so they can be measured.) I usually have 1-3 seizures, sometimes more. But everyday when I wake up strapped to a padded bed with wires glued to my head, I flip on the WGN Morning News to hear about what is going on around the city, and have a couple good laughs. I usually have a nurse, doctor or visitors in the room to share the program with, which is always nice. No one wants to be in a hospital room alone.

All I basically wanted to say here is news is important to me, but I need it fed to me in a way that by the time the program ends, I'm both informed and entertained. WGN Morning News provides that. Thanks to them.