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March 11th, 2015
At 3 AM I woke up suddenly and violently, shaking the bed with my movement and waking up Laura.
Laura: "Are you okay?!"
Me: "Yeah, why?"
Laura: "You woke up with a big jerk!"
Me: "Nah. You're pretty awesome."
I went back to sleep with a huge grin on my face.
November 10th, 2014
My Super Power
Let's start with my big walk, the trip from Seattle, WA down into CA, back up into OR where I eventually settled down for a while and got a decent job to help me get a bit more on my feet while living in a tent. As anyone who knows this story knows: I was supposed to die on that trip. It was a passive suicide but I was supposed to die. Exposure, trees, dehydration, etc. Something among the many risks along the way were supposed to end with me dying. I'm glad it didn't but it was supposed to because that was the entire point.
Working in OR, I had saved up a little and trained a little extra so I was ready to leave in about a month start my walk again, this time not to die but to actually have an amazing adventure. I ended up meeting an amazing woman and moved from OR to VA to be with her. I had an instant family as Lois was born shortly thereafter and I loved her just as much as a human can love another person. It was me and my two ladies; life is good.
Putting that together, I went for a walk where I was supposed to die and instead I ended up with a family full of love.
More than that, a few months later I went to the hospital with horrible abdominal pain. It turns out my appendix had been going slowly bad for a very long time and was ready to explode. If I had not met <lj user="laurapatrick"> when I did then most likely (looking at my planned route/time frame) my appendix would have burst somewhere in the mountains of California. I'd have died.
And recently we moved to Illinois. Illinois is a great state and I think we're going to love it here once we have some time to check it out. I mean, we've had about 5 months except for the 2 months where I couldn't drive because of my headaches/dizziness/confusion and then the last month I spent in the hospital with brain surgery. That all sounds really bad, doesn't it? It does.
Last night I realized something, however: This happened during a time when family and friends could come from wherever they were (VA, OR, MI, to name a few) and help Laura while I sat in the hospital unable to help in any way. It happened in a time when we could have someone here to watch the little one every single day for a month so that Laura could go to work. It happened during a time that Laura had no travel commitments for work she couldn't change without ease. One week beforehand or one week later would have caused problems and would have meant that Laura had to take at least a week off from work, which (as a new employee) she really doesn't want to do (but she would, of course, if needed).
It may also be important to mention that even though there have been complications I can tell this brain surgery has helped a lot.
The fact of the matter is, though bad things happen to me, I am one lucky sunuvabitch. I'm going so far as to say that, yes, Luck is my superpower. You can't rely on it because when you do that is when Luck fails, but it seems like it's always been there for me when I've truly needed it.
I'm a lucky guy. Really.
November 2nd, 2014
Writing is how I process things that happen to me. Sharing them on Livejournal or any social media is sort of the same thing; I get feedback and see things in different ways. It's a good trade-off even though I often feel a bit attention-whorish. Okay, a lot. I like writing for an audience and getting responses. What can I say?
That being said, my posts here and on Facebook seem a little bleak lately. I feel low quite often, weak, broken, and a whole bunch of other things. Today I feel like gravity is extra-specially heavy just to keep me from standing up or picking up stuff. I feel extra weak.
But I'm okay.
I'm not great but I am definitely okay. I can feel myself getting better most days. Maybe today I'm feeling a bit heavy but I can think pretty clearly and focus on things without wanting to take a nap every hour. Maybe yesterday I was especially tired but I was strong enough to leave the house and enjoy all-you-can-eat sushi for lunch. Seems small but believe me, it was a victory. At the end of lunch my hands were shaking and my manual dexterity was so low that I couldn't use the chopsticks any more but I ate as much as I wanted and enjoyed myself. That's a victory.
I'm pushing myself a little bit every day. Today I think I'm going to go to Costco with Laura and get some groceries. I can't walk the whole thing (I can do about one aisle, I would guess, before needing to sit down) and will have to use one of the electric scooters like I did at the store the other day but I'll be out and about, getting some air and exposure to the outside world. It's one of the most boring adventures in the world but it's an adventure right now.
The back of my head was leaking quite a bit since I've been out of the hospital but today I've had one bandage on all day without needing to change it. This is actually hugely good news because if it continued it would have probably meant a third surgery and I cannot go through that right now, plain and simple. Just can't. I have a bit of a headache but it's not like before the first operation and it's definitely not like the headache I had when I had a cerebrospinal fluid headache. It's just a headache. This is a good thing.
One thing I can't do very well right now is focus on a narrative so this is probably skipping around a bit. I'd apologize for that but I'm guessing most of you don't care.
here: Things seem bleak but that's because I'm just writing about what's bothering me. I'm actually doing at least a little better one way or another every day. I think it's important for me to recognize that and not wallow in the bad stuff all the time.
October 31st, 2014
Decades In Days
My steps are shuffling and unsure on my way from the living room couch and into the kitchen. Weaving around a chair takes thought and extra physical effort. Maybe enough that sitting in that chair for a moment or two is a good idea. Yeah, sitting down here, barely 20 feet from where I started walking? That's a good idea; the dizziness and weakness have come back.
Standing back up after a minute or five I shuffle-step my way in. Finally in the kitchen I get to the refrigerator, brace myself against the counter, and open it up. I don't fall over or tip much after a few days of this. I know how to stand so that I'm not falling all over myself from a small upset of balance. Mostly.
Okay. Milk. I wanted to get a glass of milk. Right. Shit, the milk just is practically full. This'll be a two-handed effort, hip braced against the counter. Grabbed it. Got it. Pull up, up, up! It's on the counter! Yes! I have to reach up for a glass to pour the milk into but that's not too bad. Small cup. It's glass so I'll be even more careful than if it were plastic but I don't drop stuff much.
Alright, it didn't break because it was such a small drop. That's a win in my book.
Pouring the milk takes some effort but thankfully I'm getting good at this. Hand on the handle, entire other arm underneath the whole thing to get it into the milk. My aim is particularly good, no extra clean up. I left the fridge open to make the next part easy enough; I already have two hands on the milk, slide it home and shut the door, every single step thought-out in advance like some expert real-time-strategy game player.
Shuffle, step. Shuffle, step. Back to the chair where I rested before but I've made an error by pushing it back in when I got up. No waystation here for this old battleship. Shuffle, step, grab something with hand not holding the milk to maintain balance. Shuffle, step. A few more. Just one more.
I'm at the couch. I'll put the milk down first before I sit because trying to hold it while sitting would be an unmitigated disaster; I'd have to go get the paper towels and I'm sure the milk would soak into everything WELL before I got back.
I drink my milk. Sipping.
I'm breathing heavily and I feel cold. I wrap a blanket around my shoulders.
It'll get better, I'm constantly telling myself. I know it will. I just have to keep pushing a little bit, without it being too much because when it's too much I sit here wrapped in this blanket for hours, scared to get back up because of how shaky I am; how much older I feel. How foreign my own body has become.
It'll get better.
It'll just take time.
October 28th, 2014
I'm Home, I'm Okay, I'm a Little Bit Broken
I'm home from my second surgery this month and I'm probably better, done with hospitals, brain surgery, and lumbar taps. I'm healing. I'm getting better. I can see that.
And I'm a little bit broken. Not from the surgery or the stay at the hospital. Those were mostly fine, though I'd rather never repeat it. But I'm broken.
I have a false memory. I know it's false. It's even just a looping memory of something that probably happened for less than a minute.
I have found one of my levels of Hell and I'm broken just thinking about it. Right now. My eyes are watering up and I'm shaking. I have to look away, watch Chuggington with my daughter for a few minutes, breathe deeply and forget what I'm remembering just for a few minutes so that I can come back to it for a few more to write about it.
It was after the second surgery. I didn't wake up during it or anything like that; talk about hell. No, this happened afterward, in my room, when I woke up from it, and the pain.
That's all that existed. Pain. My eyes were closed. I was rolled into a ball, my arms against the sides of my head, The pain. The pain was worse than anything. Nobody was there. I could ask for help but nobody would answer. Nobody was there. I was alone and in pain so bad that if someone had hinted this would last forever and offered me a bullet to the head, I'd have taken it. In a heartbeat
And I was alone. Nobody was helping me. Nobody was comforting me. Nobody was there trying to help. I was alone, calling out how horribly I hurt, crying for help and nobody was there.
The part of my memory dealing with this moment tells me it lasted a minute, and that it lasted days, months, forever. It might be a 30 second loop on repeat for all I know. I don't know. I was alone and in pain. Nobody cared. Nobody knew.
But that's stupid because they were. Laura was there, telling nurse aides that the answer "no, he can't have any other pain medications because there's nothing on the chart" wasn't enough; making them getting doctors on the phone right now
. Jenna, the best ICU nurse in existance was there finding ways to make the room more comfortable, darker, keeping people walking by as quiet as humanly possible, everything she could do. They were both right there the whole time, working hard to make me feel okay. They were both right there, with an army of people behind the scenes helping them.
I know this because both Laura and Jenna tell me this is what was going on.
I was not alone.
I've never been more alone.
I can't remember any of their help. I don't remember them being there. I try hard and can't; I break down trying. I try not to think of it and then something stupid will pop it back up in my head and I'll actually burst out into small, hopefully unnoticed, tears.
I'm getting better. I'm healing. I'll be alright. But I'm a little broken. Seeing one of your personal hells will do that to you.Tags: better
September 24th, 2014
Sometimes I Have Trouble Coming Up With Titles
My attention span is crap lately. Everything I write is crap. I feel like crap. Crap, crap, crap. I should have titled this "Craptastic, the Musical."
The constant pain and fatigue are making me feel like a waste of space. I look around me at the mess the little one created today and feel helpless to even start at picking it up. I'm going to make a go at it now that she's napping but all I really want to do is lay down and nap with her.
I'm tired. I hurt. I'm whiny. It's taken me 45 minutes to write this.
One week and one day. That's when the surgery happens. After the surgery it will take time to heal and get better. Will I be able to allow myself the rest I need? I don't know. It's hard for me to accept that I'm in pain, that I need to rest, that I shouldn't be productive and push myself.
I'm going to go clean the living room. I have no idea where I was going with this.
September 18th, 2014
I'm having brain surgery on October 7th at 9 AM.
That sentence was kind of a punch in the gut the first time I wrote it. Right up until that moment I was very nonchalant about the whole thing. "Yeah, it's brain surgery but it's easy
brain surgery. No worries!" And really that's still true. As far as brain surgeries go the removal of my arachnoid cyst
is really very simple.
It helps that the cyst pushes right up against the skull. They don't even have to see my gray matter, let alone touch it. They'll just remove a small chunk of my skull, opening up a window directy to the cyst, peel back the top layer of the cyst itself, and then pop it to allow all the fluid to drain away.
Things I never want to hear in connection with my brain ever again: "remove skull," "peel," and "pop it."
There are risks, just like with any surgery. The biggest risk is infection, the second biggest risk is that my brain will "fall" into the hole created by popping the cyst, which could do actual brain damage but the doctor doing this has done several of these in the past and doesn't seem worried.
I'll be under the knife for four hours or so, then in ICU for one or two days. After that I'll be in the hospital for another 2-3 days. Assuming nothing goes wrong I'll then come home. Assuming nothing goes wrong (and I am, as the doctor noted a "healthy guy" so there is no reason to assume otherwise) I'll be home in 3-5 days.
There will be some physical and cognitive healing to do. The physical healing will be just the back of my neck healing up and dealing with the pain. I am certain I will be sent home with some really good pain killers and I will use them as needed.* I'm not too worried about the physical side effects, honestly. I understand it will hurt and I'm ready for it.
I have no idea what to expect on that side of things and since the brain is largely still a mystery my surgeon couldn't really tell me what to expect beyond dizziness and trouble with my balance. Will I be able to talk clearly? Will my sight be effected? Will I suddenly only want to skip everywhere and never walk again?
Okay, that last one I could deal with.
I don't know. It'll probably be the simple stuff the surgeon mentioned and nothing more. Hopefully. I guess we'll find out.
Forward into adventure.*I know the risks of addiction and will be very careful.
September 14th, 2014
Here's What's Going On: Medical Update
This is all going to sound very dramatic and I don't mean it to but I don't really know how to word it in such a way as to make it unscary. Sorry.
Monday I have an EEG. Wednesday I have an appointment with a neurosurgeon.
I have a cerebellar arachnoid cyst
. I spotted it in my MRI
before I was told by the doctors that I had one. What I'm about to talk about sounds really scary but if the neurosurgeon agrees that the cyst is the cause of it all it is very easy to fix. It's brain surgery, which is scary, but it's relatively easy brain surgery.
I had an MRI and am looking at potential brain surgery because I've been having some kind of serious brain issues:
- Headaches: Daily for over a month straight at this point; today's were the worst and had me in the bedroom from about 9 until about 3, fighting the light and hurting worse every time I shifted position. I'm taking ibuprofen and excedrin alternatingly in order to help because the goddamned neurologist decided that I didn't need pain medicine. All I wanted was tramadol.
- Forgetfulness: Laura had to tell me about a friend's wedding three times before I remembered her ever telling me and I still only remember the third time but vaguely remember something about me having forgotten it. (This is just one of many examples.)
- Confusion: We went to Costco and came out to our car only I was certain it was not our car. Laura said it was our car and I believed her because she'd have no reason to lie but this car? This car was not our car. Or there was the channel changer. I tried to turn on the TV five or six times using three or four different ways that I was SURE would work. I stopped, I took a deep breath, and I handed it to Laura because while I was sure I knew how to do it, I was wrong every time.
- Shaking: I'm shaking now as I write this. If I hold my hand out it shakes uncontrollably. Copy/pasting that link was difficult. Typing is impared but not too bad this time.
- Typing aphasia: I will be typing and be 100% certain I'm typing the right things but when I look at the screen it'll be coming out as a line of nonesense. I'll stop, breathe in, realign my fingers to home row and start typing again, certain I'm doing it right, but the keys I'm hitting are completely and utterly wrong. Laura's seen this happen once but it happens about once every other day now for a few minutes at a time. The worst episode happened for an hour.
- Dizziness: Pretty straightforward. In the past I was able to reorient my dizziness episodes pretty easily (via Ender's "The enemy's gate is down" type of fix) but these are quite a bit stronger than that and I usually have to sit or hold something very tightly.
- Mood swings: Oh, the mood swings.
- Nightmares: Are these related? No idea.
These symptoms scare me a hell of a lot more than the possibility of brain surgery. These symptoms are scary. The cyst? Not so scary. Easy to remove. Recovery is a bitch from what I hear but I'd rather deal with that than what I have going on now.
The problem is that the neurologist I spoke with does not believe the cyst has anything to do with any of this. Yes, they checked my brain to see if there was anything wrong and yes, they found this cyst but he believes this large cyst is an "incidental finding." He believes the neurosurgeon will say the same thing.
All the research we're (me and Laura) doing shows that if this cyst were causing a problem it would cause all the symptoms I'm showing. Scientific research and papers, not just "Dr. Google."
We'll see what Monday and Wednesday bring.
But I wanted to let people know that this is what's going on. It's probably all going to be okay but this is what's happening right now.
August 26th, 2014
Of Course It's All In My Head
It feels weird to be sick and to talk about it without being told I'm a hypochondriac. Oh, maybe sometimes a little problem is blown up in my mind into a bigger deal than it really is but for the most part every time I've stepped into a medical test to see if there really is
something wrong with me I've been vindicated.
Extreme pain two years ago that had me knocking my head against the wall a year after feeling the exact same pain in the exact same way?
Turns out I had appendicitis and that my appendix showed that it had been in distress for a long
time. Probably over a year. The pain I had felt a year before in the exact same place? Probably an appendix attack that only luckily calmed down enough to not explode and kill me when it was misdiagnosed.
Chronic stomach aches, nausea, problems with my stomach since I was a teenager? Well, the surgeon who removed my gall bladder last year had been doing this for over 20 years and had never seen so many
stones, or stones that large
in his whole time of doing surgeries, meaning that it had probably been a problem since, oh, I was a teenager and just never diagnosed.
Pain in the middle of my stomach, right above my bellybutton? A weird bulge above my navel that I'd had for years
? Yup; hernia. An untreated hernia I'd had for years. Seriously. Then when that same place started hurting a few months later I dismissed it as all in my head. They were checking me for diverticulitis when they noticed a problem with it. Turns out it had reopened and they had to put some mesh in. And I had been trying to ignore the pain because it was all in my head.
Keeping all that in mind, why is it that now, when I have a confirmed case of diverticulitis and another
flare up over this weekend that had me in bed almost all Sunday with the pain, I still feel like I'm making it all up?
Logically I know it's because my pain was dismissed for most of my life. I was told flat-out that I was making it up. I'd wake up sick every morning as a teen and as an adult later on and I was told that I was faking it or that it was stress, nothing physical, that I had to tough it out and learn to deal with it by my parents and later my ex.
But I should be able to fight that with logic, right? I know
that I'm sick. That this is real. That I am absolutely not making this up in any way. I've had 3 flare ups since we moved out here, with this one being the worst. I have scans to prove it, doctors backing it up by telling me, straight-up "You have diverticulitis" and then showing me the proof on the tests they did, the pictures they've taken on multiple occasions. It is real
Yet I doubt myself.
I feel like I shouldn't go to the surgeon that my doctor wants to send me to. I shouldn't bother him. It's probably just me blowing things out of proportion just like
I always do. Except that I don't, according to every medical test I've taken in the past few years. But I do because I'm sure I do. Absolutely certain.
I'm having some other problems. Scarier than diverticulitis. I don't really want to talk about it because it's triggering issues to lots of friends of mine. It's possibly nothing. It's possibly something. My main doctor thinks that it's something I should at least look at but the specialist he sent me to told me it's all stress. All stress.
Of course it's all stress. Of course it's all in my head. Of course it is. Because I made it all up my entire life, right? Because that's what I genuinely believe even when I feel the pain or have the issues I'm having. It's all in my head and I'm just really good at making it all up so strongly that I believe it's real. He's a specialist so he must know what he's talking about.
This post was supposed to be something different but this is what came out.
I'm scared. I don't want surgery. I want it all to be in my head. I want to be making it up. I want to go talk to a therapist and straighten out my head, get it on straight so that I just stop making up all this bullshit pain and other stuff. That's, somehow, the easier route here. It's easier for me to believe even though I'm feeling the pain and experiencing the issues.
How fucked up is that?
Scared and angry. Not just scared. I'm angry that I've gone my life with these problems and not had them fixed until now. I'm angry that my body feels like it's betraying me. I'm angry that my brain is so messed up in this regard.
And I'm tired of being scared and angry so I'm going to stop for now. I'm just going to stop thinking about it. Double blah.
April 28th, 2014
"Be true to yourself."
Her voice still echoes in my head when I least expect it to as though some deep crag of my brain released its hold on the memory at just the right, or wrong, moment.
She told me to be true to myself. She also told me to grow up to be the person she wanted me to become. She also told me that you can't save the world so I should stop trying.
In another world I know exactly who I am so that I can be true to me. Every choice I make is straight-forward because I know my goals and my unflinching morals. Everything I do is chosen in a way to be true to the vision I have of who I am and how I want the world to conform around me. It's simple. It's true.
In this world things are muddied. Yes, I know who I am a bit better than I did in the past because I walked at least several hundred miles to figure it out, all the while fighting off the urge to just lay down and die. And sure, the people in my life now make it easier for me to be the person that I love. But who is the true me?
Is the true me the very overweight man who loves food, travels the world in search of their local cuisine, and doesn't particularly care about getting healthy? Or is the true me the man inside that breaks out every now and then, watching what he eats and getting in shape? The first man is happy except when he's thinking about how out of shape he is, the second man is happy except when he's thinking about all the food he loves that he can't eat.
Is the true me the man I am when I'm on my testosterone treatment? Or is the true me the man I am without the gel I slather on myself each morning to raise my testosterone to normal levels? The first man is sexual, more driven, and not as easily depressed. The second man is calmer, less angry with the world and more forgiving.
Maybe I'm the me who rises at 6 AM every morning. Maybe I'm the one who gets up only after 10 AM because I went to bed at 3. Maybe I'm the guy who cleans each room and keeps the kitchen spotless, or maybe I'm the guy who is more likely to leave the kitchen a mess and only semi-tidies a room or two every couple of days.
Or maybe it's much more complicated than that.
Maybe I'm every single one of those men, somehow. An amalgam of the flaws and strengths that meld and change on a daily, sometimes hourly basis. Maybe I'm more than the parts that make up the whole.
Maybe there is no true me.
And maybe that's okay.