Aseptic Meningitis

Last Monday I started my first of 14 IVIG treatments for epilepsy at Northwestern Memorial Hospital in Chicago. The first treatment on Monday, despite being a little nervous, went off without a hitch. I felt a little tired but overall good. We went back for my second treatment on Tuesday and just after the treatment I started having a mild headache. Because headache was common with these treatments, I thought that it would pass but it did not. I woke up early Wednesday morning with shooting pains running from my eyes all the way to the back of my neck. I woke up Sara to let her know that this was happening and we called the ER to ask for advice on the situation and they said to come to the hospital immediately.

Minute by minute the pain got worse and by the time we reached the ER, I could barely walk or talk. The attending Neurologist said that it could be one of three types of Meningitis, Bacterial, Viral or Aseptic (meaning neither Bacterial or Viral). They gave me pain medication with no relief while they prepared for a lumbar puncture.

The doctors administered the LP (as they called it) but it took three punctures in my spine before they could reach any spinal fluid. I actually didn't mind this pain because the only thing I could think about was the pain in my head and neck. Once they got the fluid they needed they moved Sara and I to a secluded room in the ER just in case in was Bacterial Meningitis, because it's contagious. My sisters drove down as well and everyone had to wear protective masks around me.

They decided to admit me to the Neurology wing of the hospital because I was an Epilepsy patient with Meningitis. There they could keep better tabs on my readings and possible seizures. After 14 hours sitting in the ER I finally had a room. It was all very frustrating for me and my family, but we needed to know what was happening inside me.

They tests ran for two days before they ruled it Aseptic Meningitis due to the IVIG treatment. They said it's a rare occurence but could happen again. The next time, though, we'll know what it is and I probably won't have to be admitted.

We're still on for the next IVIG treatment but this time they're going to pre-medicate me and run the IVIG fluids slower, as to avoid any adverse reactions.

Today, I still have a pretty bad headache, but managed well with medication. What a week.

Monday Countdown

On Monday I start the IVIg treatment for Epilepsy. I have to admit I'm a little excited, partially because I know that, in the hospital, I'll be safe from any side effects that could arise. I do like the hospital for some reason; it relaxes me to know that there are people there to help me. I don't have to be afraid that something is going to happen out of my control because these doctors and nurses have "seen it all before," as they say. I know that I can put my headphones on and think about my family and friends and how this will effect their lives for the better. Always having to worry about your son and husband takes a large toll, and it has show in the last five years. Five years this past Labor Day to be exact.

This summer has been, for a lack of a better word, horrible for me. I've had to sit at home and stew over the upcoming treatment; hoping it will help and worrying that it won't. I spoke to my therapist about what I've been doing to pass the time and my answer has been overwhelmingly... sleep. I find that once Sara leaves for work at 8am, I mull around the apartment for a couple hours, watch Netflix, then nap until it's time for her to come home; that's when I start my day, 5pm.

I'm very restless because of the Abilify the doctor has me on to counteract the seizure medication side effects, but a side effect of Abilify is something called akathisia, which is basically restlessness. I have another medication to counteract that but I feel like there is just too many chemicals in my body, you can just feel like there's too much; I don't know how else to describe it. I feel clammy and my eyes feel sunken and bloodshot. I have no energy, staring blankly at the TV might as well be a blank wall, the sounds around me are muffled and my thoughts seem to drift.

I've been indulging in my depression, drinking a bit when Sara gets home and eating junk food to feel like I'm having a bit of fun during the day. It doesn't help, but there's that half hour where I think good thoughts and feel like today is going to be a good day, different from the rest.

Holidays

The holidays are very important to me and my family. We've definitely become closer since 2008 and even closer since last year's Mayo Clinic trip(s); you can see me there on Thanksgiving night during my EEG. I remember going in for the EEG a week before, thinking that there was no way I was going to miss the holiday with my family. I was wrong, but my family is strong and so they made the trip up to Minnesota to be with me. When this EEG photo was taken, my Mom and Sara were busy across the street ordering Topper's pizza; they snuck me some slices just before midnight. We sat there in the hospital room, laughing and telling stories about our day.

I made our yearly reservation for Christmas at the County Clare bed and breakfast in Milwaukee this morning. This made me think about how I had to cancel last year's reservation because we were making another one of our trips to Mayo Clinic. That trip would include my infamous PET scan and lumbar puncture. For Christmas last year we were stuck in a hotel room watching a marathon of "A Christmas Story," and ironically playing the "Game of Life" on my Mom's iPad.

Sitting in a hospital room hundreds of miles away from home with my head hooked up to wires, and my family bringing me pizza at midnight. Then, a month later in a hotel room playing games and watching movies after getting scanned, poked and prodded... those were the best holiday's I have ever had. It has everything to say about what someone should be thankful for. 

Independent Study

In college, I used one of my elective courses to explore an independent study with my instructor Dale Shidler. It was really my first attempt as a writer and as a photographer. Basically, I shot photos from around the Third Ward in Milwaukee on a snowy day and graphically designed my words onto the photograph. One of the photos is shown here; I have all of my finished work on a disk somewhere and I'll share those once they're located.

I think Dale might've been a little confused as to what exactly I was writing about because they were a little abstract, and I have to admit they were a little abstract in my mind, as well. I couldn't quite articulate what I was trying to say into words. I did come away with something though. The independent study never left me, I have thought about it for the last ten years and have obviously used it in many forms since then.

**Seizure** Apparently, this subject has gotten my brain all worked up!

As I was saying, I started writing this blog in 2010 but I've kept handwritten journals since college. It wasn't until I had my first seizure that my words had actually made sense in my mind. I was saying something, I was communicating, I had an audience.

Dale was my first audience member. The independent study is where I was first challenged as a writer and every piece I've written since then I've gained more and more confidence. Hopefully, in the days, weeks, and years to come my understanding of my thoughts will grow along with those of you who wish to read my words.

Homesick

Last week I had seven seizures in seven days. We may not be out of the woods yet seeing as though the heat seems to be the culprit. It's tough because I've been staying indoors and haven't been able to ride my bike on the prairie path or walk or the store. I can tell that there's a bit of depression lingering because my sleep during the day isn't fueled by being tired but rather a way to move the day along faster until I see Sara again at night.

I've been looking at old photos and found this one of Sara and I just when we moved in together in 2004. I was unpacking and she was preparing for her trip to Ireland where she would study for a month.

I look at this photo and remember all the good things from this time and seem to forget how hard it was to be without her while she was in Ireland, and I was alone in a new city. I'd done it before when I moved away to college in Milwaukee, and I do remember being very homesick, in fact that's the subject of my written senior thesis.

In Milwaukee I missed my house, my family, my dog, my room... but in Chicago all I missed was Sara. She was "home" to me. I think that's also true today. During the day, I'm just a man sitting in a room full of stuff, but when she walks through the door it becomes our home and I become a husband.

Enjoy the View

I've been searching for a way to relax that doesn't involve prescription drugs. Seriously. I have so many drugs pumped into me to help relax my brain and my body, but not my mind. It races and dwells on the deepest subjects we have as people. There are distractions but none of them are very healthy... television, etc.

When I first graduated college I had a similar amount of time to "think," as the job market was a lot like it is today. After sending out all of my resumes, I would walk up and down the lakeshore of Milwaukee for the rest of the day. I wasn't really into photography yet, but I did have my little 3 megapixel camera with me to document any interesting events. I wish I would've documented more.

I remember carrying my point-and-shoot and huge phone, waiting for a possible employer to call. When we visit Milwaukee these days, we pass a bench where I used to sit in the morning making my phone calls. I was a wreck during this time, I know, but for some reason all I remember are the good times I had walking and sitting on that bench overlooking the lake.

New Forms of Media

This week, with the help of my family, I bought a tablet. Don't worry sister's, I'm doing my best to pay it back!

I've found it to be very helpful in accessing new forms of media like magazines and newspapers, anywhere from local to national. This is good for me because I often spend hours at home, looking for something to fill my time. I know a lot of you out there would kill to have the time I currently have, but trust me, after a month, you'll be praying for a chance to get out of the house and rejoin the world.

I've already downloaded a couple magazines from Milwaukee, so I can keep up with what's going on north of the border, plus I've had the opportunity to see the tablet-formatted version of many newspapers from around the country. It's so interesting to read columns from writers in Seattle and Washington D.C., Maine and Minneapolis. I even subscribed (trial basis!) to an outdoors magazine so I can learn a little bit about what it's like living away from the city.

I'm having fun today, that's all I can really say. I know it's something small and not really exciting to most of you, but for me, it's a small victory to have a day where I can explore and discover.