Thursday, November 18, 2010


So when I first had Encephalitis in August of 2008 I was on an IV for a week or two and lost 40 pounds. I don't recommend that diet but it was a "perk" of sorts. In the months following I ate very healthy, not even diet soda and I was limiting my food intake. I thought it was easy to live like this, after all I couldn't really have caffeine or alcohol or anything that one would consider a vice because I felt like it would give me a seizure. I was very, very careful.

(Just had a small seizure)

I've had two spaces in time where I didn't have a seizure so I was able to drive, but now I haven't driven since February of 2010. Since then I've had one or two seizures a month. Some where I stay conscious and some where I pass out. Those obviously are the more serious seizures and I need help afterwards. I don't remember much and can't understand english; I feel very confused.

Since then I've backslid. By "backslide" I mean I've started eating worse, drinking diet soda, coffee (caffeine) and have been known to have a few alcoholic drinks. I've gained back 10-12 lbs. and really feel too depressed to do anything about it. It could be the medication or just mood but for me to get into a routine to lose the weight would be a task.

Life isn't too rewarding. I told Sara that my two favorite parts of my day are seeing her when she picks me up from work and when I kiss her goodnight, adjusting the covers and taking that final breath before I fall asleep. Again, it could be medication but if I had to guess I'd say it's 30-40% medication and the other percentage would be our situation here in Illinois. It could be the feeling of dependence on friends and Sara for transportation, constant bad news from doctors (mostly NO news), actually looking forward to surgeries. The smell of NW Hospital comforts me and I wish I could stay.

The hospital is my vacation. I basically take my vacation days and hitch a ride to the city with my favorite girl to where nurses and doctors serve me, constantly asking if I'm ok and if there's anything I need. Food is brought to me, there's TV and movies to watch all night if I want, pre-warmed blankets. I could name 100 more perks. The only thing that I have to tolerate is getting shots twice a day and possibly having a seizure (which I worry about at home anyway). Loyola and NW Hospital have been the only escapes from monotony that I've had in many years.

When opening the box for the VNS device I had implanted two weeks ago there are two magnets used for switching on the device automatically if I'm having a seizure and two instruction manuals. One for patients with Epilepsy and the other manual is for patients with Depression. The device is known to improve the mood, memory skills and productivity of it's users. Yippy! I need a machine in my chest to make me somewhat normal. I've said to Sara that I want to know if she notices anything different in my behavior once they turn on the device... good or bad, I want to know. I've been binging a bit for the last couple weeks, basically since the surgery. My guess is that I'm banking on the device improving my mood and helping me control my urge to eat or drink or over-indulging in any way.

My two biggest fears are that I stay the same, gain a bunch of weight and basically feel like I have no control over myself (like now) and the other is becoming a semi-cyborg with a creepy fake smile. There's got to be a happy middle. There's got to be.

Tuesday, November 16, 2010

Post-Op Exam

I'll try not to complain too much more about the Neurological Surgery Department at NW but I have to give one last shot. We had an appointment yesterday for the doctor to look at my scars to see if everything is healing ok. The nurse said for us to be prompt and be there right at 2pm. We understood because we had to move back the appointment from 10:30am to 2pm for work reasons. Of course we arrived at 1:50pm and waited for more than a half-hour. Finally the nurse (who we've continually had problems with... attitude) waives us in and into a room. I sit down hoping to see the doctor soon and she says, "Let's see'em." Confused, I stand back up, take my coat off and unbutton my shirt for HER to see the scars. She says that everything looks good and "that's it."

So, let's get this straight. We take a half day off work, drive downtown... in sort of a hurry to get there by 2pm for you to take a 3 second look at the scars. I could've told you they look ok! If they started to look abnormal I would call! (Of course she wouldn't get back to me for a couple days, but still!)

Again... NW Neurology Department = Amazing. NW Neurological Surgery Department = well, let's just say extremely frustrating. I'm not going to drop on them too much because the surgery day was a great experience, the device is sitting well, etc. You know, it might just be Dr. Rosenow's nurse! I mean, he's eccentric, but he is very good. She needs to be taken down a peg.

After the "appointment" we went to Water Tower Place, bought Sara her Christmas present (new coat) and had a very nice dinner. After that we went home, watched some crappy TV and downloaded a new album by one our favorite bands (Girl Talk). The night actually ended pretty well.

Next week, Monday, is the appointment to turn ON the device. That'll be a long blog entry for sure.