Hospital Hamburger

When I was in the hospital ICU a couple weeks ago for meningitis, this was what was left of my dinner. A tuna salad wrap with peaches and angel food cake. I took what I could get at that point so I couldn't complain, but once Sara and my sisters returned from Jenni's birthday dinner, (yes, she's a saint by spending her birthday with her bro in the hospital!), they asked if I wanted anything from the cafeteria. I said "HAMBURGER!" They chuckled and obliged.

The thing about me, is I love Northwestern's cafeteria, it's better than one would think. Hopefully, you're never there, but if you are, try it and you'll be forced to agree. Anyway, the kitchen was closing and so the cook had to re-heat a burger from earlier in the night so it was a little dry, but it was one of the best burgers I've ever had!

They brought me a banana and some baked chips as a side dish and I got all emotional. What an experience. I had two dinners that night, I deserved it after only eating a turkey sandwich the day before. They keep extra sandwiches in the fridge at the nurses stations, those are actually pretty good, too. Deli-style turkey, none of that slimy crap. I should be a food critic, I'm looking at you Todd!

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Yesterday, I had my third treatment of IVIG. It was a horrible experience. Just working with the nurse who didn't understand that I was put in the ICU last time because she ran the IV too fast and, of course, she ran it too fast again. I didn't have the same side-effects this time, though. See, the thing with IVIG is that because it's a blood product from all of you kind donors, each dose is very different with different side effcts. Yesterday, I just had a mild, caffeine-like headache... NOTHING like two weeks ago. I drank my weight in energy drinks to hydrate and slept as much as I could, given the amount of pre-meds they administered to ward off any allergic reactions I may have.

Sara's been dealing with the hospital's administrative staff to deal with the nurse and her negligence, so she's obviously stressed, but I'm taking her out to sushi tonight to celebrate our third wedding anniversary, so hopefully that will calm us both down and get back to our normal routine. Routine being in our pajamas by 8pm and watching the news and laughing at our cats. I love life with her.

Bendy Straws

This was the view from my hospital bed last week for Meningitis. I woke up from a short sleep to find that the nurse had brought me some water with styrofoam cups and my white bendy straws.

Those in my family know that with all the stays I've had in the hospital I try to find the smallest things that make me happy, although sometimes very odd; one being the hospital straws. They're white, bendy and are wrapped in white paper.

I'll drink anything out of them while I'm there, there's just something comforting about them. Call me crazy. The thing is, I can't find them anywhere outside of the hospital, so before I left on Friday I took the remaining four straws to enjoy while recovering at home. I still have a couple left at home now, and I'm actually saving them for a "special occasion." I imagine myself waking up in the middle of the night, not being able to sleep and popping one of them into a glass of cool water to splash back while watching the early news, waiting for the sleep to come again.

Hopefully no one has to spend as much time in a hospital bed as I have these past five years, but a lesson to be learned could be to try to take a horrible situation and pick out the small, seemingly minuscule things to take advantage of and look forward to. When I was still working I looked forward to that first cup of tea or coffee in my favorite mug, preparing it then taking the first couple sips while having a friendly conversation with my friend before starting the day.

People always say that "there's someone out there worse off," and although that may be true, just know that person is finding little victories throughout the day. Whether it be writing a blog post, making a cup of tea, listening to that one song that lifts them up or even, yes, unwrapping a little white bendy straw.

There are more victories out there that defeats. Find them and take full advantage of them while you can.

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.