Today is the 8th anniversary of The Accident. Back in 2006 I was attending a small Christian boarding academy (high school) about 4 hours away from home. There were several of us kids from Yuma there, so the parents had worked out a carpooling system for the occasions that we came home such as holidays or Home Leaves. This particular event was a home leave, and several of us piled into the Astrovan owned by a good friend of my family, whose son and granddaughter both went to school with me. The other Yuma kid declined to go with us because he had some other plans, but a Korean foreign exchange student that was good friends with the son and on the same Acro team as the son and I joined us for the trip. He was excited, because he wanted to see more of America before he graduated and went home at the end of that school year. He couldn't stay and tour afterwards, because apparently Korea has a law that mandates all young men to do a certain amount of military service once they are done with basic schooling, and I'm also pretty sure that he didn't have that kind of money.

The stretch between Phoenix and Yuma is pretty barren and empty, but there is a town almost exactly halfway between the two, and we stopped there for snacks, bathroom break, gas, and Fred, the dad, put air in the van's tires because he thought they looked a little low. (There are SO many details that I'm omitting, but I don't feel like typing that much, and it would be a small pamphlet at least if I did.) It was not too far underway from that town that the back left tire blew out, and the van swerved then rolled and flipped several times. I was hit in the head with something flying around the interior. (I think it was the old school portable tv, the heavy ones? Or maybe it was some sort of tack because Fred hadn't emptied out the van from the last time he had been at the stables to tend their horses. I don't know; I'll never know.) The blow to the head caused me to lose consciousness and go blind for a period of time I estimate to be about half an hour, 45 minutes maybe? I was very devastated because I thought I couldn't read anymore. (A famous line/joke from the experience is when I was led to Fred after being freed from the van and I told him I was blind. I was crying about how I wouldn't be able to read anymore, and Fred comforted me by saying that he would read to me. My response was to wail, "You don't understand-- I really like to read!!" LOL)

As far as injuries go, I was blind and had a severe concussion, was having an asthma attack, had an internally bleeding mushy spot on my skull from being hit, whiplash, of course, and there was some injury to my ribs as well. Oh, and I cracked a toe. The granddaughter, A, had unbuckled her seatbelt to lean forward and grab something just as the crash happened, so when the glass window from the sliding door popped out she was thrown through the opening during one of the flips or rolls and then the van rolled over top of her. She was Life Flighted out of there (as as I) and ended up in ICU for a week with a lacerated spleen and a fractured pelvis, along with the requisite whiplash and concussion.

The two guys, J and the Korean S, had bad whiplash and S had a bloody nose. I'm not sure if they had any other injuries, but they didn't say so, and they still went to play in the tackle football game a day or two later that they had been planning on. They are both big guys-- tall, solid, lots of muscle, and sturdy-- so they were an important part of our school's team and they didn't want to let the team down by not playing. *smh* Men.

Fred threw off his lap belt when the van began to swerve and leapt into the space between front seats to help control the van, so he was unbuckled and tossed like a salad as we flipped to and fro. He also ended up in ICU for a week, but they didn't fly him out because he looked okay until after A and I flew away. He collapsed and they ambulanced him to the Phoenix hospital as fast as they could, and all I remember now of his injuries is that his spleen exploded into a bunch of pieces. SO not good. He went into emergency surgery, obviously.

When I came to after the crash itself, I was blind (blackness, everything blackness with purple lightning bolts shooting through and across in every direction) and disoriented and sooooo tired and sleepy. I tried to unbuckle my seatbelt for a minute or two but it was too hard and I couldn't do it, so I began to drift off to sleep. Turns out I was the only one in the van because A had been thrown from the vehicle, J and S jumped out as soon as the van stopped, and Fred jumped out to help as well. We landed on our side, with the driver's door on the ground, and the window beside me had broken but the blanket I was using as a pillow while I napped kept the broken glass from reaching my face or neck.

The van was steaming as it was resting and J thought it was smoke, that maybe the van was going to explode and I was still in it. Everything smelled like gas. I used to love the smell of gasoline, now I'm not so fond of it. J came in and kept me awake with talk, which annoyed me to an incredible degree, while he cut me out of my seat belts. What had happened is that Fred's lap belt got tangled up in my shoulder belt while everything was being shaken up, and I couldn't see to undo it and J felt that it would take too long. The van was about to explode, remember?! Because of my weakened state (concussion, asthma attack, shock, etc.) I was unable to lift myself out the hole above me that had been the sliding door's window, so J kicked out the windshield and took me out that way. I jokingly flutter my lashes at him and swooningly croon, "My hero!" when that story is told around him, hehehe.

There are a ton of funny and touching stories that go with all of this, and maybe I'll share a story every day or every other day this week in honor of Life and Second Chances. For right now, I'll sum up by saying that even though there were some scares and lots of camping out in the ICU waiting room, we all survived that harrowing experience with very little in the way of long term damage. It's practically unheard of! We were and are very fortunate, and that is why Fred and I like to Celebrate Life on our Anniversary, though the others (J and A) don't see the point or enjoyment of it and choose not to celebrate it. J feels very guilty because he was driving, but it could have happened to anyone. Really. A lives far away, and S is back in Korea, so… Actually, I think they are both in Korea, come to think of it! A married a military man, so…

Anyway, if nothing else at all I learned the value of every split second. We carry on as though life is assured, and rightly so I think or else we would be paralyzed by the thought of impending mortality, never enjoying a thing or being productive, but it is the realization that life and consciousness can be taken away in the space between two breaths that really gives context to the value and delicacy of life itself. For instance, yesterday was David S's birthday. My adopted dad who died of cancer last year. Yeah. The birthday of a dead man whom I loved dearly, and then the next day a Celebration of Life, another "birthday", if you will" with other people that I love dearly, who are all still here and kickin'. It's just so… puzzling. There doesn't seem to be much rhyme or reason to it, except the certainty that

Life will end. Yours, mine, your fish, the Pope, and certainly that pretty caterpillar you saw last week… our lives will inevitably cease at some point. Mine could have stopped on October 25th, 2006, but it didn't, and I'm very grateful for that. My essence, the core of who I am, my conscious soul or whatever, that could be snuffed out by any number of things even while I type this blog post. But I'm still here, so I'm gonna enjoy it and try to be a good person and make life as good as I can for those around me who are still going as well. It's as much of a goal as anything else, right?

Happy Anniversary, Life!

So it's been a while! After a while, news builds up and becomes all the newsier, meaning that I'm really doing everyone a favor by waiting a long time in between posts to make sure that I actually have something to talk about. The problem is that life just keeps happening, no matter whether I'm writing or not, and as it all builds up and builds up the thought of writing about it becomes more and more exhausting until I've totally talked myself out of it! Or sometimes I'll talk myself into it, but forget the most important parts lol.

So what's been going on with me? Well, I saw the head doctors, both of 'em (neurologist and psychiatrist) and I'm trying out two new meds. The one from the head shrinker is a mood stabilizer for Mood Disorder Not Otherwise Specified (because I'm too complex to just label with bipolar or manic-depression, of course!) and it has the potential to make me quite depressed. I've been feeling that for sure lately, though not entirely certain it's med related. I was having problems with depression at least a week before I saw the psych, and it only got worse for a while there but it feels like it's easing up some. Now I'm struggling with sleep problems. This could be related to an interplay between the new psych med and the mild sedative from the neurologist to keep me from twitching, but for a few days at a stretch now and then, and for past several days right now, it seems that I can't stay asleep but I can't stay awake either. The result is a groggy, drowsy, constantly nodding off lady who wakes up to find herself doing random things or finishing sentences that make no sense at all and have no bearing on what's happening around her. I'll have a thought process going on that is much like the thought processes you have in dreams, so very disjointed and unrelated to reality, but I'll come back and "wake up" halfway through or right at the end and say the last part out loud… but realize as I'm saying it that it's thoroughly nonsensical. I was talking to Bob Cat earlier today before hopping in an Epsom bath for my legs and was saying something about how it wasn't going to happen until I'd swallowed enough jade. It made perfect sense until I woke up at the jade part and finished my sentence, with a mental image of myself downing handfuls of jade beads like they were prescription pills! Crazy.

So there's that, and I feel like I'm going crazy and my days are just a muddle of nonsense, but when I'm "sober" I'm doing quite well. There's a storm front that moved through last night and today and I am definitely feeling it! I'm taking my regular strong pain killers, plus a couple extra (since I now have that luxury when needed), and drinking an ale now and then to help give the pills some "oomph". I know you're totally not supposed to do that, but even with the really strong pain meds I'm at "take me to the Emergency Room" pain levels, which is saying something. Can you imagine where I'd be at should I not have the good medication that I finally have? I'd be done for.

I still think about the last few months before I found this pain doctor, and how excruciating they were, and how I was honestly dying. My body was under so much stress from the unceasing, incredibly high levels of pain and other symptoms that my vital strength was just… slipping away. Fading. My organs were shutting down, bit by bit. Blood tests tell me that the functioning is good, so I'm happy about that. I'm mostly happy to not feel like I'm fading away, to feel like even though I'm still sick and being "attacked by gremlins" (as we've decided to euphemize the situation) and that won't likely change in the course of my life that I can still participate and be a real person, not just a fading ghost or a memory of the friend someone used to have.

I have had some interesting new health news from the past few weeks of dr's appts, and that is that I have a double stranded DNA, whatever that means. I guess I have to do some more research on that one and what it can mean, but one of my lupie friends assures me that it can mean any number of things. Then there's the whole Mood Disorder thing; that was a bit of a surprise! All of the doctors and specialists I've seen in the past couple of weeks, though, have totally and completely supported my EDS theory and my work towards going to Tucson to see the Rheumatology Department there for a diagnosis, if possible. The pain doc brought up another possibility, due to my "testing positive" for Lupus again (from blood tests done just last month), and that is arthritic lupus, rather than the kind that gets in there and destroys your organs and whatnot. He is seeing more of an arthritic type of involvement with the pain than simple fibromyalgia can account for, so we'll see. I have been dealing with a very strong and potent case of pitting edema in my lower legs, ankles, and feet as well as intermittently in my hands and forearms, but I have a doctor's appointment next week to see if that's of any concern at all. 

I started physical therapy yesterday, and I can tell that it's going to be grueling but beneficial. I'll have to keep strong boundaries with my therapists and not completely destroy myself trying to please them, as I have energy barriers that most patients don't have to deal with I think, but my therapist is very understanding and good to work with, so I should be fine. We'll be focusing on my back, and also on exercises to help me lose the weight that I've gained this past year from the meds, improper diet, and a sedentary lifestyle. They will be very valuable, as I'm hard pressed to find exercise that are effective yet low impact and considerate of my physical de-conditioning. I realized during my evaluation with my therapist that I'm really a lot weaker than I've ever been.

Oh, one more "exciting" thing that happened is that my disability claim was denied. This was rather expected, as the odds of getting approved the first time through are notoriously low, but I was hoping that we might be one of the lucky ones. The "Tiara Fund" fundraiser that I started has really really helped to take some of the immediate financial pressure off of us that we were facing, and so has the monthly couple-of-hundred from BioDad, but honestly the financial difficulties haven't eased up at all. If anything, they've increased since my doctors keep adding more and more specialists to my treatment team, and while that's a good thing I just don't have the money for all of these appointment copays and the bills that follow after and the prescriptions I need to get by!  Just looking at the funds raised is kind of laughable, because what difference is $400 going to make in the grand scheme of things? And yet… it lifted a heavy burden from the Robot's mind because we were not relying solely on his paycheck for basic living expenses and medical funds. He makes enough to keep us in house and home, but that's it. If something unexpected happens, or if I need some money for medical stuff, that's a straw that'll break our little glass camel's back. Don't feel sorry for us-- we're doing just fine, and there are plenty of folks who have it much tougher than we do, I know that. It just does get tough sometimes, living with the constant stress of "how in the world am I going to pay for this?!", especially when the "this" is necessary medical help.

Anyway, enough of medical and financial woes! Exciting stuff, exciting stuff… this is getting hard to do, as I'm still in that "drifty" state where I keep nodding off to sleep in the middle of typing. It makes my words a little unpredictable in spelling, and also the content of my thoughts a little outrageous. That last sentence, for example, almost came out as "It makes my outfits a little unpredictable, but they benefit from it in the long run." I had an image of this radical blue tiger stripe tie dye shirt-dress that I was wearing instead of my usual more boring clothes, and I was genuinely excited for a moment about opening up the package and wearing it for a minute… until I realized it wasn't real and that I was supposed to be talking about words. Gaaah! Focus, woman, focus!

I have a massage in just a few hours, which can't come soon enough, as the weather that passed over brought me to the ground with pain and swelling in my legs. I tried to get Drogo to rub my feet, ankles. and lower legs, and he did so briefly and reluctantly, but he really dislikes massaging. It's like pulling teeth to get him to rub my back or feet or something. Doesn't matter that I could really, really use it or that he could be "fixing the problem" as he so loves and is deeply motivated to do, he just doesn't like it and is bored by it and so I go massage-less most of the time. I often wake myself in the night with my arms lifted above my head, massaging and stroking my hands and forearms, or my face and head and neck. It's kind of weird, but whatever. I'll get by. I always do.

I'm seriously flagging here, so I'll wrap things up by sharing the most adorable thing EVER! My friend the Artist went to a Comic Con  a few months back, and I was super super jealous because she got to meet the most amaaaaaazing people within the geek culture and see the coolest stuff, etc. etc. etc. So she paid to have an artwork commissioned for the Robot and I, but it's taken this entire time for the artist to get around to it I guess. Today she posted it on my Facebook wall, and she had some really neat things to say about it in the conversation we had around the picture itself. Another friend of mine also commented on our marriage in a very positive way, and it was very encouraging since I've been feeling a little discouraged about our relationship lately (a lot of it fueled by chronic stress, and insecurity over my appearance now that I've gained so much weight). We even had a "talk" on Sunday, which was mostly me talking at him and explaining what I was feeling and why and citing some examples and him explaining his perspective and me reordering and reorganizing my thoughts around this new information and realizing that we're actually okay after all and it was all fine and I was just breaking down under the stress is all but he didn't mind because he's awesome like that and just bore up under it patiently like he does and walked me through it. I could wish that he were more passionate in daily life, more demonstrative of deep affection and emotional displays, but it is the solid bearing up and the refusal to be flapped and bothered and moved out of place that signals his love to me, strong and sure as a beacon. I just sometimes lose sight of his particular version of affection and passion, start comparing our relationship to "others"… and let me tell you something: that doesn't work. Ever. Even if I were healthy and we did have the sunshine and rainbows that we so long for (because we've walked in a miserable, cold, rainy mist for so long now!), every relationship is different and looks different and functions differently, and my main concern ought to be "Are we healthy? Are we okay with us?" Because that's what's important. It's not important whether or not he does _____ like so and so does (although that would be super cute and sweet and nice), it's important that he is still here, and not going anywhere, and that he still thinks I'm pretty and that he believes that I can still do things but he also doesn't hold any illusions about what I can no longer do and he keeps me from sailing off of a cliff with the best of intentions to carry me forward. The picture that my friend commissioned, it's… well, it's perfect. It's us. And seeing it, reading her description of her hopes for its creation, really helped to remind me that what we have is perfect for us, and we have made no mistake in coming together and creating a life that is a blend of the two of us. We have done just what we needed to, and that's beautiful. We're beautiful. And seeing us from an outside perspective did a little something inside of me to push away some of the stress and make a cozy little space where I could just nestle down and really see and appreciate the beauty of what and who we are as a couple.

Without further ado (because I'm totally rambling now), I give you… the Robot and his Lady!

My friend the Artist (not the artist who drew this), says, "I know the one thing I really wanted out of this, was to show that through the ups and downs of stressing over bills, you battling your illness and Corey stressing over how to handle things, that no matter what you guys can make it. And together you guys make a great team, warriors and lovers, conquering any obstacle that comes both your way. I remember paying her during the time when I was up in phoenix when you were going through at lot when I was reading your blogs. So I figure this would be a perfect gift for you guys. and I am very happy how well she was able to illustrate in what I wanted." My other friends said, "Oh my God this is perfect," and "JFC that is so Corey. Look at that leer."

In addition to those little gems, the "this is perfect" friend and I were having a conversation and my sex life came up as a topic. She had this to say, which (combined with the picture and sentiment behind it) totally cemented my faith in my relationship and its unique power and beauty.
"You two will be fine. I personally find that sex is best with a person you already fiction well with outside the bedroom, and you two are made for each other. Inviting someone to come over and play is a unit decision, a group activity, and only works because you two are already perfect together on That level. You'll be fine."

Yep. We are perfect together, and no matter what we can make it. We are warrior-lovers! The Artist also said, "And during the time I was reading the blogs up in phoenix, I felt really sad and helpless not being able to somehow get rid of the depression and the stress that you were going. So I figure I ask this, that way it shows some happiness that it can bring about through trouble times. I mean I can choke illness out of people, but I do much best to try to create something or think of something to present as a gift through help of others such as this artist or form a gift by myself. And of course I did my best to pay whenever money I had for the sushi up when you had your doctors visit. But yeah, I am going to cry up a storm here when I keep talking like this. Anyways you have amazing friends that have your back, how about that :)."

And she's absolutely right. With the Robot/Drogo firmly ensconcing me in his arms and my amazing friends at my back, there is no way I can not kick ass as I live life facing the gremlins. My various diseases may never go away and they may never be totally tamed and managed, but I'm not going away or being tamed either. I will continue to wear my tiara to doctor's appointments and to paint my walker bright colors to cover the shame and anger I feel at having to use it. I will prevail, and I will do so with or without this elusive thing called "sleep"! For now, though… I'm going to try to catch some. :)