Those little reminders that completely ruin my day.....

Of course I will always deal with residual issues - pains, nerve damage, mobility limitations, and the most traumatic: the trach.
Having a hole in your throat is actually one of those medical things that's worse than you'd think. It's rare that I really talk about this -- I just hate sounding all whiny, I don't like to remind other people, or myself, that I have more limitations than I'd like to admit. There are a lot of things people don't realize people with trachs deal with. Think about the path air takes when you breathe in through your nose: all those hairs in your nose catch dirt, dust, fibers and who the hell know what else. When I breathe thru my trach, the only thing between all that crap and my lungs is my trachea. I have a large hole in my throat that is open to the inside of my respiratory system.
Instead of blowing my nose, I need to blow my trach. If I don't take it out and clean it daily, it stinks and the skin around the trach gets itchy and rashy. The absolute worst, most heartbreaking part of having a trach, for me, is the obvious restriction -- water. No trach can be so tight that water won't get in from the space around the outside of the trach. This is such an issue that one with a trach could drown just taking a shower. It took me years, but after spending years coughing and choking on water every time I got in the shower, I found this odd looking plastic thing that goes around my neck and Velcro's in the back. In the front, it's this robotic, Star Wars-looking guard, but even then I occasionally choke on a drop of H2O. Of course, it's bad enough that it complicates taking a shower, but fall asleep in the tub and slip down.... I don't know how much water you need in your lungs to drown, and dry drowning freaks me out.
It's easy to think about what else I'm missing out on-- I lalalalove water parks. Living in Denver for almost 20 years and never went to the water park. Lived in LA for about a year and never swam in the ocean.... living blocks from the beach in Orange County was a constant reminder that I'll never be able to learn to surf.
Yeah, I'm "lucky." Obviously things could be much worse. But they aren't. I don't need to process and deal with what I don't have to worry about, and what didn't happen to me, but what I have been through, and, man, it really sucks that I can't ever surf!
I really would LOVE to find a vocal cord specialist with the same type of paralysis as I have, or at least to find one with the compassion and dedication to help find a fix.
You'll hear a lot about mostly the fucked up doctors I had, but sometimes I'll give a rad dr. props. Here's a bad one: one of the drs that has done a trach surgery for me (in the early years, with the hospital straps they give you to use around your neck that hold on with velcroe, I coughed out my trach in the middle of the night and it closed before I woke up and realized it - so, I have had trach surgery about 4-5 times, I believe. Interesting fact here: I left the hospital able to breathe on my own.... the halo I was in and the damage to my eyes directed my neck to heal at an angle and crooked/tilted, and all the nerves on my left side are stretched to hell -- 7 months after my initial month long hospital stay I was rushed to the hospital with co2 poisoning because my cords wouldnt let the gas release)... anyway, this one doctor told me he'd never see me again because I was very depressed at the time an asked to spend time in the psych ward -- he said I was stupid for being depressed and he would no longer see me because I had a perfect quality of life and was weak.... He not once asked me why I was depressed, and this was only within 2 years of the accident.
Usually, I'm ok with having a blowhole. Really. A lot of the time, it's actually funny.......





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The Anniversary

The other day was the 6 year anniversary of the accident that landed me in the hospital for just over a month. I'm guessing that todayish would be the anniversary of one of my first memories, but considering the amount of drugs that they were pumping through my system, who knows what order my memories actually happened in? ;^)
I know I couldn't speak - by the time I left the hospital I still had just a whisper - whether there was a tube down my throat or I was (later) teaches and had vocal cord paralysis. I would try to communicate by writing, which wasn't always the easiest. There were times that I was strapped down, because I'd gain consciousness, freak out and try yanking out all the tubes, so trying to write out something wasn't ideal. Or when I was so drugged up I thought I was writing letters but all that came out were dots, or I'd pass back out in the middle of a word.
I always had odd requests. I remember my mom needed to go to the store because I'd run out of paper, she asked if I needed anything and I told her I needed eye cream.... Seriously half dead in the ICU and I was worried about wrinkles! Or, I guess I thought they weren't feeding me because it would irritate internal wounds, so I asked my mom to ask 'the lady' if I could have some mashed potatoes with just butter, no salt.
Usually the anniversary has a deeper impact... This year I'm so consumed by other things I haven't really had the time or energy to reflect... I guess that's why I've chosen to start 'writing it out' now.

what happened?

Here is the short version, with my best attempts at not including my feelings, opinions, or even memories.  My attempt here is to tell what the injuries were.  Disclaimer:  there are several things that I either misunderstood or weren't true. I'm telling what I've been told and do not claim that everything here is 100% accurate, like numbers of surgeries or I may have some details about what injuries effect what confused.  That's why I'm trying to keep this as basic as possible.  I can answer questions that others or I have later.
I woke up in the hospital.  I had tubes coming out and going in to me everywhere. I could not speak. At one point I was strapped down to the bed for pulling things out that were keeping me alive.
I finally came to find out that I had survived an atlanto-occipital dislocation.  My skull had become dislocated from my spine.  This is not the same thing as breaking my neck.  The analogy would be the difference between breaking your arm and dislocating your shoulder. Only I dislocated my head.  I had also blown out the back 20% of my hip, and being on the borderline for surgery, it was decided to let it and my broken ankle heal without surgery.  I had a trach for awhile, but it was removed before I left the hospital.  FYI, I now am trach dependent. I had around 13 surgeries in a week.  I had pneumonia, my organs began shutting down, and my brain was bleeding.  Eventually they inserted a feeding tube.  Right away, I believe the day after the accident, my skull was fused to my first vertebrae, my C1, down to C3.  Most cervical fusions do not involve the skull.  I was placed in a halo, which attached to a plastic chest piece that was lined with wool -- it was not removable.  In fact, after they decided they needed to place the tube in my stomach they had to have some metal electric sawed off the vest and they had to do it with me in the piece.  I had severe nerve damage, including damage to most of my cranial nerves.  Eventually, my eyes crossed,  a sign of optic nerve damage, and I had double vision. My trachea clamped shut.
I was in the ICU for weeks, then moved immediately to the rehabilitation floor for strengthening to get ready to leave the hospital.  I would only be able to learn to walk again. Nerve damage is temperamental and unpredictable, and nothing could be done with my neck for 3-4 months. I'd be released from the hospital the end of February.
I'd be refused

My new neck

I know I said my next post would be the accident story, but I'd rather, for right now, post a pic of my new neck, post aug 21, 2012 surgery to correct further damage from jan 2007.

It's about time....

So. Finally. A real first post. It's about time, but until now, I wasn't sure exactly what I wanted to share. Not because I couldn't think of anything to write, but because I have too much to write about. I am a first time blogger. And I have so much I want to share with the world, but some of it I don't want the world to know who said it... And not just my words, but what's said to me by who and what it means. I really am not here to piss anyone off by telling the world what they said to me and how inconsiderate or fucked up it was.
So, maybe I should have used a pen name, but then I'd have to try to cover my identity by not being honest by default - lack of full disclosure. And you deserve that, if you are going to spend the time reading my rants and occasional epiphanies. And I'd have to cover up my real injury, and lets face it, isn't "internal decapitation" one of the things that got you here?

Maybe this post should tell you about the accident. Then again, you can also google my name or internal decapitation and find out a lot on your own.... But those aren't my words. None of them. There may be a quote here
and there, but no one really told the story from my eyes. And I don't think anyone's heard it this way yet. And maybe, I'll die before I finish telling you my story the way I want it told. But that won't be my problem, and I think writing this blog will solve many other problems that are very much mine, and really mine alone. Yes, I have family, and I am married, but the way I have been since that day is only my problem, and only I can fix it. I hope through writing in this manner, allowing comments and public viewing, writing with honesty and honor, telling my truth,explaining my experience in this way, I can handle the rest of what's waiting for me.

In my next post, I'll give you the basic facts -- the time period, the surgeries, what the doctors said, etc. after that, like I said, it's time to be honest with myself and others what reality really looks like.

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