Something Out of Nothing

New albums I’ve missed that looking forward to finally hearing:
Damon Albarn’s Everyday Robots
Liam Finn’s The Nihilist
Lykke Li’s I Never Learn
The Pixies’ Indie Cindy
tUnE yArDs’ nikki nack
The Horrors’ Luminous
The Eels’ Cautionary Tales of Mark Oliver Everett
The Black Keys’ Turn Blue
Tobacco’s Ultima II Massage

Books I’ve read:
Nick Harkaway’s The Gone-Away World
Richard Kadrey’s Sandman Slim, Kill the Dead, and Aloha from Hell
Jeff Vandermeer’s Annihilation and Authority
Daniel Suarez’ Daemon and Freedom

Comic series I’ve consumed from beginning to end:
Runaways
Y, The LastMan
Invincible
Federal Bureau of Physics
Grindhouse - Doors Open At Midnight
Guardians of the Galaxy
saga
The Sandman Overture
Revival
Morning Glories
I also got all caught up on The Walking Dead

I think I’ve read a lot more comics than books because they are so much less work to concentrate on. I remember at one point when I was reading Sandman Slim - I was on both steroids and painkillers, a I could actually hear what was going on in the scenes. Not only the main action, but stuff that my brain made up for background noises. I’m sure the lack of sleep enhanced the hallucinations too. It was kinda cool.

This is one of my favorite times of year at The Kansas City Art Institute. The campus is filled with a frantic creative energy. I’m really bummed to be missing it this year. This weekend is the end of semester shows, all of the departments on campus get to show off the top work of their students, much of it for sale. We always find a few treats, and this year was no exception.

I did manage to get out for a little while of Friday night to see a few departments. My friend Erich and I met my coworkers just before five in our offices in Mineral Hall. When I got there, they were acting a little strange, like they didn’t want me to see something. I just wanted to go back and see my desk because it’s been so long, but they were subtly trying to get me out. I managed to sneak past and found this:

It was very good to get out and catch up with a lot of the faculty, staff, and students at KCAI. I feel very lucky to work with such great caring people - no other job has felt so much like home.

Maura and I went back on Saturday so that she could see the shows, since she spent Friday night in Illustration. My head paying the price for being out Friday night but it wasn’t as bad and I had feared it would be. It’s mostly a lot of pressure with stabbing pains every once in a while. Several times Friday night, I would cringe mid-sentence, the pick up where I left off; I’m sure it looks strange. Saturday was the same, although later in the day it was getting worse, with more constant headaches. This morning is much the same. I slept okay last night, although I woke myself up out of zombie dreams several times. I’m sure I’ve developed a higher tolerance after six weeks of headaches. I’m really hoping to get back to a somewhat normal life next week. I see the neurologist on Monday and I hope to go back to work by the middle of next week. I’m anxious to hear what suggestions the neurologist will have for me.

I’m in my sixth week of recovering from the DAVF embolization - sitting around at home doing very little. The few times I’ve gone out, I’ve paid for it later with worse headaches.

I hate to complain, there are times that six weeks of nothing sounds dreamy, but I’m more than ready to get back to real life. As much of an introvert as I am, I miss being around people - I think I’m pretty much fully recharged at this point. I must admit, it took four weeks for me to rally start getting stir crazy. Though I was pretty drugged up for the first three.

As long as I take it easy, the headaches are tolerable. It’s when I try to do much of anything that they get bad. If I can find something to concentrate on, I can tune them out. I’ve been reading a LOT. I lost count of how many books and comics I’ve read over the last few weeks. Also, some TV shows and movies, when I can tolerate the sound. One thing I miss a lot is listening to music. There have been several new releases that I have queued up, but haven’t been able to listen to without pain.

I see a neurologist on Monday, less than a week away now. I’m really hoping that she can help me deal with the pain.

I just talked to my neurosurgeon’s office about the MRI I had on Monday. My doctor said everything looks great. Unfortunately, I’m still having the headaches. They have referred me to a neurologist who will help me with pain management. Hopefully they’ll be able to help and I can finally rejoin society!

I spoke with my neurosurgeon’s nurse practitioner today. They’ve scheduled me for an MRI and an MRA on Monday to hopefully figure out why I’m still having these dang headaches. I should have the results pretty quickly, my neurosurgeon wants to look at them before he leaves town next week.

We just got back from meeting with the neurosurgeon. He’s prescribing yet another round of steroids. Basically, my brain is having trouble dealing with the major changes caused by the procedure. He told us that the impact of the fistula was one of the most extensive he’d seen - a lot of veins in my brain were affected by it. He’s still pretty sure he got it all, but I’m going to have another arteriogram in six months to make sure.

My brain is having to deal with some major changes and it’s not happy. The steroids reduce the swelling which helps with the headaches. In the images he showed us, before and after, you could see a serious decrease in blood flow in the affected areas. The difference was drastic. I could also see the area that he glued.

If I’m still having headaches after the this third round, I’m going to schedule an appointment with a neurologist to develop a strategy to deal with the pain. He said it’s possible that I’ll be dealing with these for an extended period of time, possibly the rest of my life.

Today in the waiting room with all of the sounds, people talking, coughing, sneezing, phones ringing, etc. was nothing short of torture.

Due to continuing headaches, I was prescribed a second round of steroids. I’m on day three of the second round and I’m still battling some crazy piercing headaches, like needles stabbing through my brain. I’ve been trying to wean myself off of the painkillers, since I was almost out of them, but they just prescribed another round.

The neurosurgeon told me I would be dealing with headaches, but I don’t think it’s typical that they persist this long after the procedure.

I’m really starting to feel weird about not leaving the house in two weeks. I’ve been reading a lot of books and comics, when I’m able to concentrate long enough. I’ve also gotten caught up on Dr. Who. Galifrey Lives!

Don’t tell HR, but I’ve been helping my coworkers a little bit via email. Twitter and Facebook are also helping me not feel totally isolated from the world. I’m hoping I’ll be able to rejoin society soon!

I want to thank Maura and my mom and everyone that’s brought treats by for keeping me from gnawing on table legs; the steroids make me ravenous. I’m sure I’ll have gained about 20lbs by the time I’m feeling better.

I’ve been trying to write an update to what’s been going on the last week, but it’s been hard to concentrate long enough to be coherent. I don’t intend for this to come across as whining. I’m just want to document and share my experience.

The steroids that I’m on are some of the strongest available and I started on a pretty high dose. I’m over the halfway point tapering off of them, but my body is still flooded with them. I’ve only had one good night’s sleep and that was only six hours. The rest of the nights I’ve spent either lying in bed wide awake with my racing thoughts or trying to read. Half the time, while doing either one, I’m in a dreamy/hallucinating state. My days have been spent in much the same way, trying to read or watch a show, but unable to concentrate on anything. It took me three days to finally find a book that I found interesting enough to try to finish and I know my brain was inserting things into the stories that weren’t actually there. I’m also taking painkillers which don’t help my mental state all that much either. I’ve been an emotional wreck, flipping from highs to lows rapidly. I’ve basically been a catatonic psychotic junkie, waiting until the next round of drugs.

Maura is a saint to have put up with me this week, I know I haven’t been the easiest to be around. At times, even the smallest noise makes my eardrums reverberate, which triggers an earthquake of pain and misery in my head. When the neighbor was having her driveway replaced last weekend, I was ready for murder.

At this point, I’m trying to cut back on the pain medication but if I wait too long to take it, my head really starts hurting. The doctor mentioned the possibility that I might need another round of the steroids to make sure to stop any swelling, and I’m beginning to suspect that it might happen. I’ve sent them a message to see what to do next and I hope to hear from them tomorrow.

I’ve also been feeling really guilty about missing work. I know it’s been a hard week for my coworkers and I feel bad not being there to help. I’m not going to push myself either though. I wouldn’t be much help even if I were there right now.

Thank you, everyone, for your emails, notes, and support through this. I may not be able to respond right away, but it really helps.

I am pretty drugged up on painkillers and steroids to help my brain to deal with swelling as it comes to terms with what was done to it, so I may not make much sense. Please forgive me. I just wanted to post a small update.

I spent just over 24 hours in the hospital. I was able to get up and around pretty quickly, so they sent me home before lunch on Friday. The procedure itself took a bit longer than expected, I was in there for about four hours. The neurosurgeon ended inserting tubes into both legs to make sure they got all of the fistula. He told us that he’s 98% sure he got it all. I’ll have a follow up visit with him in a couple of weeks and then another arteriogram in six months to make sure it’s all gone. This really is the best possible news.

The most noticeable thing for me is the pulsing sound that I’ve been hearing for about five years is completely gone. It’s a little hard to get used to it not being there, especially at night.

I basically I feel like I have the worst hangover of all time. I didn’t sleep much at all the night before the surgery and I haven’t really slept much in the last five days, which I’m sure it due in part to the steroids.

Yesterday the neighbor a couple houses down from us decided to have her driveway ripped out by a couple of noisy dudes and a bobcat. Even with earplugs in, I could hear the rumble of the engine, the crashing of the cement into the dump truck, all of the the yelling. I was ready to murder someone. I know it’s not their fault, they have no idea. But jeez, of all days they could have picked.

In less than a week I will have superglue injected into my brain. It’s been a rough month of waiting, dampening the joy of the first days Spring and our birthdays. I would like to thank everyone who has offered their thoughts and prayers and help. I am very grateful to all of you. Particularly my wonderful wife and awesome coworkers who have had to deal with my black cloud daily. They have helped me try to stay positive and with the heavy lifting.

If you’re curious, here’s a video illustrating the procedure:

[youtube=www.youtube.com/watch