The Retreat to the Blogosphere

The last time we talked, I was getting ready to find out if my doctors were going to approve me to move forward with bariatric surgery. Since then I have been through medical appointments, flat tires, financial crises brought on by my insurance carrier raising my co-payments without telling me, and a twelve hour road trip. So, like, a fairly normal weekend in the Hawkwind Habitat. (Still not sure about that name. Kinda sounds like a children’s show about eco-issues. )

So – weight loss surgery. I have been approved by both my neurologist and my surgeon to move forward with a “sleeve” procedure. This requires several more doctor visits, a psychiatric eval, and 3 months of dietary counseling before the actual surgery takes place, probably in early August. I am simultaneously relieved that I was approved and terrified of what is going to happen to me now. Being informed that one of the stipulations was No More Beer, like, forever was kinda depressing, so I am enjoying a higher number than usual now, and will probably have my Final Beer Ever event on my birthday in June.

The good news is that my surgeon thinks that I should lose upwards of 100 pounds as a result of the surgery. That is still a mind blowing number to me. The last time I weighed 200 pounds I could not drink legally, the Berlin Wall was still standing, and Bill Clinton was still the president of the USA. Let that sink in for a minute. It has been a looong time. I have only the vaguest idea of what life will be like without all the attendant crap that comes along with obesity. I just wanted to cut back on my medications, and for my knees to stop hurting so much. Not sure what I will do with myself if I am at a “normal” BMI again.

In gaming news, I have actually gotten in a couple of rounds of XCom 2 and Darkest Dungeon since last we spoke. I have managed to get my DD team to the threshold of meeting the Necromancer Apprentice, and I managed to get my XCom squad totally wiped out. Again. It is becoming a theme. However, my research across the Internet for info about these two games has led me to a couple of very interesting streamers. ChristopherOdd is currently running an awesome “Let’s Play” of XCom 2 that I highly recommend to anyone interested in the game. And my new favorite Brit, Adam, over at CallofCthulu is running daily alternating streams of XCom 2, Darkest Dungeon, and Sunless Sea, 3 of my favorite games. I highly recommend his channel, but be aware that the theme is very dark, and the language is very adult. You have been warned. If you drop in, tell him Hawkwind said hello.

I will get up both an XCom and a DD video on YouTube this week. I would like to be putting things up more than just once a week, but that is about all I can manage with all the chaos going on in my life right now. I will also keep everyone posted on the progress of the bariatric surgery journey – I had considered doing a little video blog, but can’t think of anything I could do there that I couldn’t do here on Misdirected. Thanks to everyone for all the support so far!

Wishing Myself Resistance To Beer + 10,

– Hawkwind

The Times, They Are A Changin’

The Times Are Chaning

Here it is, already Wednesday, and I am only now putting up my first post for the week. There has been some household stuff to deal with, but mainly I have been running around town dealing with various medical appointments. Let me fill you in.

A little over 10 years ago I was happy with my physical condition. I practiced 2 to 3 hours a day (you better believe that being a musician is aerobic exercise), lifted weights 3 or 4 times a week, and was constantly on the go. Sure, I was overweight thanks to a rich diet and ingesting a couple of cases of beer a week. But I could still load out all our gear, play a 4-hour gig, load everything back in, and still make it to work a few hours later. My 240-pound frame was solid – I looked very much like a fire hydrant. I used to tell people that I was the strongest fat man they knew.

Then, Epilepsy happened. Depression, lack of physical activity, and weight enhancing medications like Depakote ballooned me up to 280 pounds within 6 months of my diagnosis. Over the years I have fought my weight with med changes, failed diets, and attempts at various physical activities that always wound up with me injuring myself, having seizures, or both. Now, at only 45, I have high blood pressure, arthritis in both knees and one hand, and serious respiratory problems.

My “Come to Jesus” moment occurred about a month ago, when I stepped on a scale and weighed in at 302 pounds. I had never been over 300 before. 296, sure, but somehow 300 seemed so much more significant and real. I had to do something. I went in to talk to my regular doc, and she suggested that my BMI of 48.8 (“normal” is 18 – 24) indicated that I look into bariatric surgery. There was one catch, though. As someone with intractable seizures, I was going to also have to get my neurologist to sign off on the idea of bariatric surgery as well before I even consulted with the surgeon.

The appointment with my Neuro is today, a few hours from now. I am incredibly nervous about the whole thing. What if he says yes, and I have to have a big section of my stomach removed? What if he says no, and I am stuck here in Jumbo-size Land? The thoughts chase each other through my head like a demented carousel. I haven’t slept more than 5 hours a night in quite a while.

But, the truth is, I can no longer be passive about this. After Lor had me watch “Fat, Sick, and Nearly Dead” a couple weeks ago I at least have a backup plan if surgery is a no-go. I have to have something that will get enough weight off my frame so that I can actually start exercising again without injuring myself. If it takes surgery to do that, fine. If it takes a short term 100% juice diet, fine. I am just going to have to grit my teeth and push myself through the eruption of seizure activity that occurs whenever I start losing weight. It is a very different mindset for me, as I have spent twelve years trying to avoid seizures. But I do not want the moment to arrive when I step on a scale and see “350”, and am going to have to make avoidance of that my focus.

So, fair warning to everyone, there will be some health and weight loss posts scattered amongst the gaming articles from here on out. If I do end up going through with surgery, I will also start video blogging about that as well, since several video blogs have been so helpful to me in educating myself about this whole process. I am a big believer in “paying it forward” these days. I can’t afford not to be.

Feeling Really Large And Frightened,

– Hawkwind

Waiting on Tomorrow

Photo Credit: kentishmayde via Compfight cc

Seizures are a real pain.

 

Though there can be a real, live “pain” component involved (when we bite tongues, bash into walls, strain muscles, etc.), what I am actually referring to here is the more “major inconvenience or imposition” kind of pain. Like when Aunt Gladys won’t shut up about her new fabulous colon cleanse diet just as everyone is sitting down to Thanksgiving Dinner. That kind of pain.

For the past several months I have been slowly getting my act together – Blogging daily, getting the HawkwindScho Twitch channel off the ground, even beginning to write articles for a major Hearthstone website. As the seizures came in, I dealt with them, worked around them, and moved on with whatever I had been doing previously. But, this past week, the Seizure Demon decided to return and show me who was really calling the shots around here. Out of the past 7 days, 5 of them have been filled with seizure activity. I have failed to write several days worth of blogs, missed an article deadline at Hearthstone Players, have been completely unable to do any streaming whatsoever. It is almost as if my disease took it very personally that I was making some headway, and decided to smack me in the face as payback. Not much fun at all.

As of yesterday, I have a new neurologist/epileptologist who is interested in more aggressively pursuing alternate treatments – “Are you satisfied, living with intractable seizures?” is the question he asked me bluntly during our initial appointment. Of course, I am not, really. But, after 11 years of this, you get kind of used to it, I suppose. You learn to live with whatever your malfunctioning brain throws at you: inability to work, inability to drive, incontinence, periods of general stupidity, lack of anything resembling a functioning memory, the social stigma that accompanies having this type of disability. But the thing you learn to live without the most is hope. To hope for an improvement in your condition is to set yourself up for a thousand pounds of pain falling on you from a great height when the latest and greatest treatment also fails to have any positive effect on you. My Vagus Nerve Stimulator brought my seizure activity down from “suicidal thought inducing” to something more like “manageable.” Since its installation in 2009, every other light at the end of the tunnel has proved to only be yet another oncoming train.

As of yesterday, though, I have agreed to take some shots back at my condition. The voltage on my VNS got adjusted upward, meaning I have searing pain in my throat and head every 5 minutes when it triggers.  Is pain worth more seizure control? I believe it is – the body gets used to pain. I have also started on yet another new medication – one that supposedly has no mental impairment side effects. Given the perpetual fog that the 2,000 MG of Tegretol I live on every day has left me in, I could not accept even more damage to my thinking and memory. But this new one’s major side effects are upset stomach (got that already), headaches (already all day every day), and hair loss. Am I willing to live without hair in the name of better seizure control? Sure, why not. Lor says she doesn’t love me for my hair anyway – and what other person do I need to impress with my looks? Hair loss is why God invented hats. I have a lovely collection of MLB baseball caps I can start wearing, should it come to that.

So, why this post today, instead of a normal gaming post? I wanted to let all my readers know what has happened over the past week to my normally regular routine, for one thing. But, mainly, I wanted to tell my friends and loved ones that read this blog regularly that I haven’t given up just yet. I am not yet resigned to life with intractable seizures, and am still willing to shoulder the burden of hope for something better down the road. Epilepsy has been a part of my life for so long now that I can’t even really imagine what life without it would be like. But, I am still willing to find out.

Waiting on Tomorrow,

– Hawkwind