Well, it’s been a very tough year, health-wise, but I’m very pleased to say that they’ve finally given me a diagnosis, and it sounds very logical.

First, being the end of the year, let me recap with included tidbits from my old site (so I can break it down and get rid of it, eventually) and if you want the recent diagnosis, just skip to the end:

From January 4th, 2010:

Geez, when does it end? I’m so proud of Robin for not having to go to the hospital over the holidays (she often does) but I’m beginning to wonder if I need a trip there.

Day after day, all hours, moaning about the aliens outside that are going to get us. Struggling to keep her from wandering outside in zero degree weather to run them off. Throwing dishes on the floor. Banging her head on the wall.

If she goes to the hospital, it’ll just be more stress for the both of us and they’ll only say it’s because of the weather, etc. It’s like that every time she goes this time of year.

But I’ve been dealing with my own pains from the bad weather, plus other health issues, and the stress of only getting a fraction of the work needed done, plus no rest from the constant episodes.

What to do? What to do?

Meh, I’ll get through it. Always do. Forgive the venting.

The Next Day:

Thanks for your support on last night’s past. I won’t lie, I was getting so upset that I was actually considering taking a LOT of pills. There was just this overwhelming urge and I couldn’t stop crying. I finally asked Robin to sleep very close to me so I couldn’t do anything without her knowing.

Even today, I keep getting these sudden bursts of grief and I don’t know where it’s coming from. Nervous breakdown? I’ve never had one, so I wouldn’t know.

…Damn, I’m a mess! But Robin is now focusing more on me so she’s doing better as a result. She’s an angel.

I’m getting editing and formatting done today, which pleases me tons, but I’m taking a lot of breaks, too.

Thanks again, all, and take care! I’m very lucky to have such great friends.

January 12th:

I went to the doctor today and got a blood workup as well as my “Re-animator” injection. And I told the doc of the problems I’ve been having.

And to back up a bit, Sunday I had another bout similar to the week prior. First, I got super irritable, like everything was pissing me off, and then everything just shut down. I could barely move, like all the energy was gone. An overwhelming sadness came over me, tears streaming down for no apparent reason, and I couldn’t shake the images of suicide out of my head. It lasted for the rest of that night, and then for most of Monday, I couldn’t even move to get out of bed. When I finally got up, I felt like a zombie, like I’d been hit by a truck. By late evening, I was talking better but then went to sleep early again.

Today, everything was hazy and I was having trouble concentrating to do anything.

I explained this to the doctor, hoping that he may think I was low on hormones or something, where the injection would be an easy fix. But he doesn’t believe it’s the case. He wanted me to check myself in for showing strong signs of major depressive disorder. I explained that I couldn’t leave Robin alone for that long and he understood. So he started me on Lexapro to see if it helps, but it can take a few weeks to get in the system good.

And it’s just so weird. I’m happy! I’m happy with Robin, the bills are getting paid well enough, and I love what I do at Skullvines (would probably be depressed if I wasn’t doing it), plus I have a blast each week on the Metal Crypt.

I don’t have any bad memories springing up during this, just that overwhelming emotion. It’s like those people on that shitty movie, The Happening. No reason, just wham!

So I don’t need cheering up, or someone to talk to (though I appreciate the offers), because I can’t think of what’s wrong. Maybe it’s just something wrong, like serotonin levels dropping in my brain (Lexapro helps that). Maybe it really is a bit of a breakdown from worrying over Robin for so many years (which I’ll take on ’til the day I die, and gladly). I don’t know, but consciously, I’m okay.

Like I said, it’s weird. I still hope they’ll get the blood test results and see it was hormones, but I’m not getting my hopes up on that. Right now, my head is still swimming but my thinking is more straight.

I’ve gotta kick this, though. I have to be fit to take care of Robin. I couldn’t handle it if they took her away (no one is saying that, but it’s a fear now). Robin is being very supportive, by the way. She even joked to the doctor that I’m getting her back, LOL! She never left me side during my low points, though.

Well, things got worse from there. Going from memory, I believe my last Metal Crypt interview then was with the Kevin Eastman, creator of Teenage Mutant Ninja Turtles. I kept spacing out -brain farting- throughout the discussion, and that’s when I decided I couldn’t be on a live show while this was going on. More and more, I couldn’t sleep and everything was going downhill. It took a few months before I was able to blog more than a few words, but in April I recapped things in more detail.

From April 4th:

Okay, I just got back from the doctor but before getting into it, I’d may as well offer a bunch of details on this issue.

Back in about ’93, there was a time when I was sitting on the couch and simply couldn’t move. I could move my head a little. I could look around, etc. But my arms and legs were pretty much dead and I couldn’t talk. It’s like I could think what I wanted to do, but the signal wasn’t reaching the destination. After sitting there for a bit, I wanted to change the channel on the television. I stared at the remote next to me and concentrated hard, focusing on my arm to lift. Finally, my arm slowly lifted and I was able to pick it up. Then everything else slowly came back to me.

I told my mother about this, and she got me to the doctor as soon as possible. That’s when they discovered that my thyroid had stopped working, and I’ve been treated for hypothyroidism ever since. It was assumed that perhaps my metabolism and everything just dropped to the point of having zero energy for a bit.

Up until last year, this still happened maybe once every six months. I would start out getting really irritable and snappy for a few minutes, then my body would slowly go to jelly. I’d slump down wherever was comfy and ride it out. I always figured it was a glitch with my thyroid issues and never concerned myself with it.

So last January, as some who follow the blog had seen, I had a spell where my nerves felt shot and then this overwhelming sadness crept over me. I sat there for a long time, either sluggish or unable to move, and all these suicidal thoughts entered my mind (despite having no desire to really do this).

It scared the hell out of me so I went to the doctor, thinking that perhaps it was a hormonal thing (I have to get injections). The doctor didn’t think there was a link there, and with the suicidal thoughts, he thought I had depression and put me on medicine for that. Naturally, he was extremely concerned about the suicidal issue first and foremost. He wanted me to admit myself in the hospital, but I have to take care of Robin so that was impossible.

Since then, I keep having moments where I’ll get irritable suddenly, then my vision gets blurred or the room begins to move, then my eyes roll up and my knees give out. All followed by a period of not being able to move. Eventually, anywhere from ten to thirty minutes later, I can start to get up but I’m sluggish.

I had one bad night a month ago where I threw my favorite drinking glass at a door and it shattered, and then I went to another room and sat down. All I remember of that is one minute I’m in one room, the next I’m in the other and I can’t move. It felt like someone was holding me by the back of my head. Tears were streaming down my face and the room kept getting light and dark. Also, the white curtains were changing colors. Robin had taken her night-time pills so she was unable to help much.

Forty-five minutes later, I was able to move again and I wanted to get the hell out of that room. It was raining outside and while it was very cold, I thought it might snap me out of it; wake me up. I walked out there and stood on a concrete step in front of the house.

The step collapsed under me. It was apparently hollow and I went straight down, banged my shin on the edge as I went.

So I went back inside where it was safer. Knowing how Robin will have a lot more episodes when the seasons are changing, I figured that perhaps I was having similar problems.

Well, the spells have been getting much more frequent and got to the point where I was literally passing out for a bit. I looked at the side effects of the medicine I was on for depression, and saw that some rare side effects are fainting and seizures. Since I wasn’t jerking around, I thought, “Hey! I’m fainting! Maybe it’s the meds!”

Looking back though (the reason I got so detailed), I think it’s unrelated to the meds, but I’m sure they weren’t helping.

We called the doctor last Friday and he said to stop taking the meds, both in case the spells were side effects, but also because he’s thinking something else is wrong other than depression. I went in to see him on Monday and he wanted to have me tested for mild seizures. It sounded logical because, when you look at all the symptoms of mild seizures, they resemble what I’ve been going through: READ HERE

He had an EKG test done, a CAT scan and an EEG test. Everything read fine, no seizures. Now, that’s a very good thing: no depression, no epilepsy. Actually, that’s awesome!

BUT! What the hell is it?!? The doctor is naturally very worried, hitting the books even while I was there. He now thinks that perhaps it’s Cataplexy. And again, when you look at the symptoms, they’re dead on.

My doctor is trying so hard. These symptoms are related to so many things, and he’s just trying to cover everything based on the information I give him. He’s not going to diagnose me with anything, though. Instead, he asked that I set up an eye exam ASAP to rule out any possible eye problems (blurred vision, etc) and he will set me up with a neurologist in Iowa City.

I’m very worried about the medical bills piling up, but this needs to be done. Even on the sliding scale, they’re building and we live on Robin’s disability alone. and the state won’t give me Medicaid because I’m not disabled. They’ll only give it to Robin. For this reason, I’m excited about the new reformed healthcare bill being passed. And I’d like to give a big “fuck you” to those jerks throwing such fits about it. They don’t want people like me, who have very serious reasons for not working and live in poverty, to have health care provided to me. So yeah, “fuck you” to them. It’s not like I’m not dealing with enough (and yes, Robin’s episodes have been worse on top of things, because she’s so worried about me). You people who think it’s so horrible that I get some help, I’d love for you to be in the room while I’m sitting in a chair, unable to move, and saying with slurred speech, “No, no Robin. Stop hitting herself. There are no monsters in your head.”

Okay, so I apologize for that last little rant but I needed to get it out. Anyway, I appreciate all the support from friends and family. I’m not driving so my mother has been a real savior, getting us to the doctor, store, and such. And I appreciate the patience of our authors at Skullvines Press. This has naturally caused delays in my ability to get work done. And I’ve missed the last few episodes of Metal Crypt.

When I’m quiet on the Net, I’m just trying to deal. Either that or spending what time I can on editing/formatting. When I can’t concentrate on that, I try to pop on enough to comment at the Skullvines forum, then walk away to rest.

I’m glad to know I’m not suffering from depression or seizures, but it’s still frustrating not knowing what it is. I’ll keep you posted

But I still had my sense of humor:

I’m working on my Easter tradition: finding bunnies in the yard and raping them. Gotta get them back for whatever they did to chickens to get those off-colored and chocolate-filled eggs. And don’t get me started on the little chicks-turned-marshmallow.

Other than that, I’ve had two spells since 3pm so I’m not doing much but listening to metal and playing the free demos I downloaded on the PS3 for Motorstorm and it’s sequel. Hot damn, I love those games! The sequel is new and pretty expensive, but the first is cheaper. If I get enough birthday money next month and can stay atop bills, I’m baggin’ that sucker. Then maybe the sequel will be down in price by Christmas. When recovering from this crap, it’s really nice to just sit and bash into other vehicles (and the occasional boulder). It helps my focus and lets loose some frustration, lol.

Robin’s doing good and being very supportive. Sherlock Holmes came in from Netflix the other day so we’re about to watch that… on second thought, Ithink I neeed to lie down.

From April 6th:

Okay, Monday was the worst day thus far. I was not only having spells but it’s like I was on the verge of having them constantly. It was taking all of my concentration just to focus on not having them. Finally this evening, I collapsed in the hallway heading toward the kitchen (got a nice bruise on my arm from that). I crawled into the kitchen and collapsed again. Robin came in and sat by me, but couldn’t do much. After a few successful tries of making myself get up, I went flat on my back and couldn’t move or talk at all for an hour.

Robin was all set to call an ambulance, but I managed to exhale, “Mom” and she called her instead. My mother got a hold of my doctor at home, and he said to go ahead and have an ambulance bring me to the hospital, and he’d have me transferred to Iowa City where they have a great neurologist that he wants me to see.

Well, I finally came out of it and told Robin there’s no sense in me sleeping in a hospital room when I can sleep at home and go to the doctor in the morning. I even took a shower and made a cheeseburger. Weird how it might hit and run.

So just in case (probability is high) they send me off to that hospital in the morning, I just wanted to let everyone know. If I don’t blog here Tuesday night, just figure I’m there. Otherwise, I’ll offer another update.

Should that happen, my mother (in all her awesomeness) will make sure Robin is taken care of, and I’ll get things arranged with S.D. so things can still run smoothly at Skullvines. And in case anyone is wondering if, in the case that I got out of the picture, the press would fall, I say, “Hell no!” It’s a business, not a personal venture, and S.D. is on the ball. Plus, there are plenty of folks we’re close with who could fill in if it came down to that. Lol, I never talked about that possibility with him because I haven’t been doing very good when he was home to talk. But that’s my personal opinion on the matter. So no worries there.

Man, what the hell am I doing up at this hour? I keep trying to sleep, but I’m worried, plus my head is swimming and aching. Well, I’m gonna try it again. I’ve gotta get up in 4 1/2 hours.

My first sleep study was on April 25th:

So I’m going in for one tonight. Wish me luck! I roll around a lot in my sleep so I hope I don’t screw it all up. The other night, I woke up with my back against the headboard and the pillows were all on the floor – that’s how bad.

Oh, and there was blood on my mouth and a dead deer on the floor. How did that get there?

They only performed a brain wave study that night, but they discovered that I had sleep apnea, which explained my severe lack of rest. When I wasn’t having insomnia, I wasn’t sleeping right. I’d gotten to the point where I’d be up 24-30 hours, then sleep for 4 or 5, then up again another 24. It was really messing me up. I never said much about this, but on the night of my birthday, May 4th, I flipped out. I overturned a coffee table and then took a bunch of my pills. It wasn’t a suicide attempt; more of an attempt at rest.

Right after, I had a moment of clarity and realized what I’d done, so we had an ambulance take me to the ER. During the trip, I gladly drank down two things of cherry-flavored charcoal.

The next day, I told my doctor that if you deprive someone of sleep long enough, even a sane person will eventually flip out. He agreed and had the hospital bump up the appointment for my next sleep study, the one that would get me prepared for a CPAP machine (it treats sleep apnea).

From May 11th:

Did you get the license number?

That was the first thing I asked when the nurse woke me up early Monday morning. The night before, as she was preparing me for my second sleep study – the first found out I had sleep apnea, this second was to try out a mask and breathing machine to fix it – she’d said that when the body is deprived of rest for a long period of time, you’ll feel like you were hit by a truck when it finally gets it.

More like a train. Eight hours of the first real sleep I’ve had in at least six months, most likely longer since it was January that I started collapsing at moment’s notice.

But yeah, I was totally useless all day Monday, bedridden for most of it. I won’t get the machine, etc, for a few more days, I’m told. Until then, I’m back to the way it’s been. Once I get the machine, I may be absent for a bit, taking Monday as an example of how I’ll be.

The nurse called it “sleep debt.” The body and brain is owed this rest, and the bigger the debt, the longer it will take. That said, it shouldn’t be more than a few weeks. Today I’ve been touch and go. I keep wanting to get up and do things but get wobbly like I’m going to pass out when I stand. At the computer, well I’m starting to lose focus and mess up more right now, so this is about my extant of typing.

With that, I’ll go. Take care all, and thanks for the well wishes.

On May 19th, I discovered my friends had started an auction for me:

There are some truly fantastic people out there, and I’m fortunate to know several. I’m typing this now, while the coffee is kicking in hard, because the last three days have been rough regarding moving around much. I did get some writing done the other night, but it was in an Ambien haze (doc is trying to help me rest until I get the sleep apnea [CPAP] machine) so I don’t know if it’s any good.

My author friends were great at keeping a secret, but once they started announcing it, Google alerts had my back. I checked my email the other day to see THIS on Michele Lee’s blog.

Wow! You all are amazing! I was blown away not only by this auction S.D. and Karen are putting on for us, but by the contributors. I called S.D. and Karen personally, but I also want to thank everyone else from the bottom of my heart (Michele Lee, Brian Keene, Ray Garton, Bryan Smith, Mark McLaughlin, Carlton Mellick III, Michael McCarty, Peter Straub, David Dunwoody, Robert Dunbar, Louise Bohmer, Kim Paffenroth, Steve Vernon, Jake Burrows, and Tim Deal) as well as all those bidding.

The funny thing is I discovered this right after getting off the phone with the local ambulance department, trying to convince them to let me make payments since the bill was nearly equal to our monthly income. Then when I saw the auction announcement, my jaw dropped and Robin thought I was having a spell at the computer, LOL!

As for the medical updates, I hope to hear about that machine any day now. I’m waiting for the hardship application to be approved. Once I have it, I really think I’ll be on the road to recovery.

Doc still thinks I have cataplexy on top of sleep apnea, but that’s harder to diagnose, especially with the apnea aggravating all the symptoms. Either way, the apnea needs to be addressed before I can function well again. I cannot guarantee, however, that I won’t still be a silly grump.

Again, thank you. I’ve had a few days to let it sink in and I’m still blown away.

And the last one, from June 18th:

Just a quickie to say that after 2 1/2 weeks of being on the CPAP, I’m definitely doing a lot better. I’m still not 100% where I’ll get a burst of energy and start doing things, but if I go to far, I get myself down pretty fast.

But I’m driving again, I no longer need a cane to walk, and I’ve been working on catching up on work. It’s awesome! Thanks again to everyone for their support and positive thoughts during this ordeal that’s taken all year to conquer.

Well, that didn’t last long. By August, the cataplectic spells were getting worse again. Apparently, after the “sleep debt” is over with, you get this Superman feeling for a bit, with all kinds of energy. Then your body stabilizes and acts more normal. So the apnea was being taken care of, I was getting rest, but the episodes were continuing. The positive thing was I was no longer getting strong, negative emotions right before the episodes. I’d still get really irritable on occasion just before, but for the most part, they kicked in either when I felt a strong emotion, good or bad, or just randomly when I didn’t sleep much (still have bouts of occasional insomnia; I just sleep well when I am asleep).

During the summer, I was concerned about the press hurting due to my slowing ability to get work done. Save for that Superman period, my concentration was shot for editing, and if I worked very much on anything, it would send me into a spell so I got very little done even on my good days.

That’s when we started discussing a merger with K.H. Koehler of Black Death Books. And regardless of health issues, that was a great move! Even with my decreased involvement, this team is a match made in heaven. It’s benefiting all of the presses in ways we’d never imagined. A few things were delayed here and there, and some drastic changes were made, but things are definitely going up.

While I’ll always be a part of it, Karen and SD are the major forces behind it all now. I’ve been teaching them how to make ebooks, etc, so that if I get out of the picture here or there, they’ve got all the bases covered.

So, there was talk of my doctor sending me to St. Louis – Barnes, specifically – well, they won’t even make an appointment with you if you don’t have insurance. You can sit and rot for all they care unless you’ve got that $$$.

But the University of Missouri hospital in Columbia was much better.

Admittedly, I was pretty upset after first visit. CLICK HERE to read about that. I almost didn’t go back for the follow-up which was just last Friday. After all, they’d kept overnight and the neurologist’s understudy came in the next morning to say it’s just stress and I need to see a therapist. That was really vague and dismissive, and I felt like they were doing nothing but running up a huge bill, then sending me on my way.

I told this to my doctor, who also wanted to get a second opinion (I’d even mentioned it to Robin’s psychiatrist, who agreed with my feelings on it), but then he suggested going to the follow-up anyway. After all, I hadn’t been able to speak with the actual neurologist who I’d gone there to see (the previous day, I was having episodes in his office so there wasn’t much to talk about).

I’m glad I did because he was completely different.

Diagnosis:

It turns out that this doctor specializes in just what’s wrong with me. He even spoke about it last week at a seminar. I have all these dead-on symptoms of cataplexy, yet during an attack, my brain goes really calm vs. a disturbance in brain waves like what’s supposed to happen.

He described a patient who had been in a car accident and experienced head trauma, then several years later began having convulsions on a steady basis. They were obvious epileptic seizures, yet there was nothing going on in the brain to suggest it, and more importantly, no damage in the brain. No danger at all, save for hurting yourself during a convulsion.

It’s called a non-epileptic seizure and the illness is called Conversion (or Dissociative) Disorder.

In my case, the seizure is cataplexy. From how it was explained, this is what’s happening: anytime I get some form of anxiety, whether it’s from being happy, sad, stressed, or even from lack of sleep, this disorder taps into my subconscious mind and “converts” that anxiety into a physical neurological attack, and in my case, it mimics cataplexy. I guess it’s like how, when you get anxiety, your mind tells your lungs to breath faster and your heart to beat harder. Well, mine also tells my muscles to stop working. Something like that.

Most people with this disorder have some sort of emotional scarring that causes it, like something repressed that they couldn’t let go of. However, head trauma can cause it, too. And that’s what he’s saying is going on with me. It’s logical because I had smaller bouts of it within a year after the accident in 1992 (which I still need to blog about sometime, in more detail. It’s a wild story).

The doctor was also very clear in that I’m not crazy (though some of my friends may argue that, lol). It’s not a mental disorder, but it is a chemical imbalance causing it. It’s just not the same kind of imbalance that causes depression, schizophrenic, and the like. So I have my wits about me, but my subconscious is short-circuiting and sending weird commands based on the brain activity where anxiety/emotions come from.

At least, that’s how I took it all.

It’s said that just knowing what it is can help. During an episode, I won’t be as stressed from wondering what’s wrong with me, so there’s a chance the episodes won’t hit as hard, or last as long. Hard to say, though, because there’s still a lot of mystery around it.

He started me on Prozac, which will take a month or two to help, and it’s zonking me a bit while it gets in my system.

Yes, Prozac is given for mental disorders, but it’s primary use is as an SSRI, Selective Serotonin Re-uptake Inhibitor, which is for treating neurological disorders (like cataplexy, narcolepsy, etc). By raising the levels of serotonin in the brain, it helps decrease episode frequency. They don’t go away, but they’re less troublesome.

Serotonin is a natural mood elevator, as well, which helps anxiety. And that’s why it’s also given to patients with mental disorders.

So it’s good to have the sleep apnea under control and to finally have an idea of what I’m dealing with. The bad news is I’m most likely stuck with it. I can’t drive, use a cane, all that frustrating stuff. The good news is it will cause no damage to my brain.

I’ve applied for both disability (because I am very disabled with this) and Medicaid to help with the ever-growing medical bills. Hopefully, I’ll hear something soon.

Thanks again, everyone, for your support and well wishes in this. And I apologize if there were a lot of typos in this. It’s taken all weekend just to type it up so I’ll try going over it again later on (See? The editor in me will never go away!).