quirkytizzy: (Default)
I am not a cursed pirate. I am the ghost of a pirate wreathed of nothing but curses. They waft from me, maybe in the moonlight they are beautiful, rising from opalescence, broken bones like smoke. In the daylight, they are only marks, ugly and open, the heat of hellfire scorching whatever I touch. Somewhere along the line, I died but was not given the mercy of a life fully ended.

So here I stand, here I write, half of my words proving where the blood once pumped, and the other half proving where the blood still falls.

I was fired from my job yesterday.

A thing I did not find out today until the pharmacy told me I was no longer covered. A call to HR confirmed. The failure to organize the paperwork needed, to keep in touch, not returning phone calls. The hospital visits and consequent, very short trips home were far too sedated, I could barely speak, let alone face the world that requires paperwork as proof of any experience.

I asked if I could simply rejoin the next training class. I asked for any solution, anything at all I could do. Any document, anything at all. Nothing could be done, he said. Kindly, mind you. Very kindly. Very kindly and with much finality.

It all led to a demise that meant nothing more than a box with my things in what was in my cubicle sitting behind the security desk.

My father was able to pay the 71$ needed for today's medication. I do not know what will I will do when the next bottle needs refilled.

Rayhawk, I was halfway through an email asking you for an early Christmas, birthday, next Christmas gift of a cheap computer that Pat had recommended, so that my communications here did not require four separate, difficult, decomposing devices.

Now money, or even what it purchases, seems so paltry, when my very health, my very life is at risk.

There are options. Tomorrow morning I head to the welfare office and take them for everything I can. I will file for backpay, see if there is any way I can find an advocate to regain my job.

Jobs are a dime a dozen. Jobs that have immediate health benefits are unicorns - and I am far from a pure virgin.

Survival mode has not been engaged. Survival mode is part of what got me in this trouble to start with, so many years ago when I decided that I'd never escape the claws of poverty. I don't know what is here now, but it is not panic. It is not a scramble. It is a thing I will come up against, a hurdle, that I will not make over gracefully.

The hurdle and I will both hit the ground. My knees will bruise, the scrapes will bleed. And I'll set it up again, back up again, and keep running towards at it, keep trying that last second leap, and eventually I will make it. The hurdle will stand as it was, upright, and I can begin running to the next one.

It'd be a lie to say that dragging what blood still pumps to the surface sounds comforting. It'd also be a lie to say that any blood that would seep through would solve anything - and I have no time, no room, for anything but solutions.

And bleeding is not a solution.

"But you couldn't hide, a heart made of glass
You put yourself together with all the strength you had

Listen, I know it's simplified from the other side
It's easy to gloss over all the messy reasons why
And it's easy to forget where you've been
I guess that's what the scars are for, huh?

Like let the record show who let it slip and who held it together

My self-hatred never took me where I wanted to go
At the end of the day, you know I still had to face
That I can pick at the pain, but I can't cut it away."
- Icon For Hire

I told Jesse I would try not to go too deep tonight, that I would try to keep the words to something that only skirts the edges of far too many knocked hurdles and scraped shins.

I don't know if I accomplished that tonight. But even if I haven't, I can sleep tonight knowing that I have done something far better than bleeding.

I wrote. I said something. I put the pain somewhere else than my skin. That's accomplishing something.
quirkytizzy: (Default)
I don’t wanna be stuck, I don’t wanna be crazy
This is the way that my sadness made me

For years, this is all I’ve known, this has had my heart, this has been my home
And now I’m scared to lose myself, scared of letting go

I fear now
There’s not much left of me
When you take the sick away
Who am I supposed to be?
" - Icon For Hire "Supposed To Be

The sick isn't the lupus. As with my manic-depression, that cannot be lifted. But without the rest of it....or WITH it and the rest of it...I still fear letting go.

Does that fear go away? While you're in the process of letting go? At the end?

I'm not sure what I'm asking here. All I know is that while I'm supposed to be released tomorrow, I've already been here 15 days.

And these are becoming average length stays.

One moment

Oct. 24th, 2016 08:22 am
quirkytizzy: (Default)
20 years later, and the blood was still pretty. And that shames me.

Trigger Warning: Self-Mutilation )

There is so much more I understand now because of that single moment.

The rules

Oct. 24th, 2016 03:03 am
quirkytizzy: (Default)
The nap I was so sure wouldn't show up yesterday did, indeed, show up. And stayed showed up. For hours and hours, even unto the night and wee hours of the morning.

I saw and wrote something yesterday while in line at the coffee shop.

Perspective is watching a mother choke on her coffee, telling her husband over a static phone line that their seven year old son did not live through surgery. Perspective is hearing her say "He's gone...beyond". Perspective is knowing the word "death" too large a word for any human to bear in such a time.

Perspective is wondering how in the world I can consider myself young at 35 when as we speak, a 4 foot body is being carted to the morgue.

What I did not write down is that perspective also means eventually losing that moment. That we, as humans, we will witness such a bearing of profundity, and then we will file it away in our heads, get into our cars, and curse traffic and turn up the radio real loudly. I believe it is meant to be like that - if we were to live every moment in the profound moments of strangers and other people, we'd go mad. Mad and absolutely, utterly unable to build and live our own lives.

Brains can be jerks, but sometimes, just sometimes, they know what they are doing.

For the distraught woman at the counter shop, I wanted to reach out, to physically touch her, to say I was
sorry. But those are boundaries out of reach in normal situations. Times of extreme grief deserve the respect of even further enforcing them.

See? Sometimes I do learn the rules.
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Bart, you had said I had the luck of a cursed sailor. This led me to think what an actual cursed sailor would do to UNcurse himsef. This led to me to thinking I just needed to find the Pieces of Eight, toss them in the right chest in the right hidden island, in the moonlight (you can totally where this idea came from) and BAM, calm seas and busty wenches will flock to me for the remainder of my life.

But (1) The hospital won't let me and (2) Scurvy sucks. So as far as bad luck and the good luck that always seems to follow, I suppose the saying is "You will always remember this day as the day you ALMOST outsmarted lupus!

If only.

Time for another nap, if it will even show its face.
quirkytizzy: (Default)

(Yeah, I know the way I worded what a disability is problematic, since there are cases of mental health so impairing that they do require disability, but we all sure as fuck know David ain't one of them.)

I guess it's okay if he pops up in my thoughts in a while, so long as it's not because I've been seeking him out. (Stalking him out. Let's call a spade a spade.)

* Sidenote: I used to hate Tums. I still greatly dislike the taste of them. Chalky, like trying to chew badly dyed drywall. And due to the whole renal thing, it HAS to be those kind. No gummies. No candy like ones. Just the ones that are like eating dusty dinosaur bones.

HOWEVER: Now, that I realize just how AWESOME THEY MAKE EATING, I suddenly kind of like them. I'm starting to get small licks of that kind of care.

In my search for coffee this morning, I landed before a candy vending machine. I was like "AHA! No one around to chastise me if I buy this and wolf it down in the room."

And then I thought just how badly I wanted to fuck myself up today and realized I didn't want to fuck myself up AT ALL. Don't get me wrong, there are worthy occasions. An AA picnic, I went wiiild. Hot dogs, burgers, pasta, cream based everything chocolate, salmon Ritz crackers. Paid for it later, but still worth it.

A candy bar? Two? Shared with no one but my own personal shame? Totally not worth it.
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Some nurses will let you bend the rules. Others are rule-follwers. So long as you know which nurse you're dealing with, you know what to expect and how to ask for what you want.

And then there's this nurse, who most certainly fulfilled the need behind my request, but in the most bizarre way possible.

ME: I'd like a couple of Tylenol, I have a headache.

NURSE: Your last dose of Tylenol was two hours ago, you'll have to wait another two hours. You ARE able to take your Tramadol right now, however.

ME:....uhm...ok...I'll take my Tramadol....

So now I most certainly do not have a headache, I wonder what drives someone to aqueis to a narcotic subject that the patient- didn't even as for.

So now I'm double groggy and headed back to bed. At lest I shouldn't need my Xanax for a while, if at all, toeay. sorry we didn't tak much on FB. My lungs stil hurt but not so bad today.

Holy sht. Tramadol+ anythin prescied is reallt just drunk texting.
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You know what pisses me off the most about hospital stays? It's always "just one more day. We'll be able to release you in the morning."

It's getting the point where I don't even remember the dates going in and out of the hospitals because they're happening every two weeks - and that's a generous estimate.

One day my ass. The next thing you know you've gone a week without wearing deodorant and are hunting down the prime spots on campus to sneak cigarettes.

(Judge all you want. Fuck you, too.)

I'm also going to miss a concert I've been looking forward to since my first hospitalization in Auguest. Icon For Hire. I was going to join their Paetron, set up a monthly donation, and let them know in a hand written letter what their music is getting me through rightfuckingnow.

Jesse bought the tickets because he knew just how much it would cheer me up. And I can't go. I'll catch them next time, I suppose. It's just I was really really looking forward to this.

God, listen to me whine. What the fuck else am I gonna do? Jesse isn't up. Pat isn't up. Amanda is up but she's in class. None of my friends are morning people.

Why do I pick the most incongruous people to befriend?
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There is no such thing as a single hospital night stay. This I have discovered. FOURTH run in the ER in two months, and they said "Oh, just overnight" and today is DAY FOUR.

And I ain't getting out tomorrow, cuz they gotta shove a huge, hollow dildo down my throat to see exactly why my lungs are getting so fucked lately.

I'm just gonna start decorating. Bring in my skulls, my gigantic Brandon Lee poster. Start leaving my dirty clothes on the floor. Why the fuck not. I spend all my time here anyways.

I broke the goddamn mouse, cuz I can't go one hospital visit with breaking something. Granted, it was a mouse that David was using in high school, but I'm sure I'll get gruff from Jesse about it anyways.

Fuck all this anyways. Broken mouse, broken keyboard, USB keyboard on it's last legs. I'm gonna find a weak but semi baggable doctor and fuck him silly for a new laptop.

Doesn't have to be much. A chromebook will work. Doctors need lovin, too, right? Or at least a mutual using of dick to electronics.

quirkytizzy: (Default)
WARNING meds came in a good ffew hour late. So except drunk- med texting. It's kind a good thing I have a penchant for the rare and yet effectively dramatic scenes when losin my shit. While in the hospital, we discovered I've been incubating a particular nasty case of pneumonia. Pneumonia still kills NORMAL people. People like me????

Well, that's why they required TWO blood transfusions in a row to clear up.They say I'll be released today. We all know that's legalese for at least 3 more days. Better than that dying, I suppose.I suppose

I didn't want to die. Oh, I thinking of it. Trying desperately to think of a way to end it that wouldn't (1) leave my corpse covered in vomit (pills just make you sick from both ends before you actually die) (2) or NOT make a big clean up for anyone. I've ruined enough people's days, I'd like to not do so in death.

I thought about od's on meth - you just get cold, and your heart hurts for a seconds. But I don't know anytne with all that and it seemed a lot more work. Best to cut. No planning.. Just ....there. That's why there's a difference between suicide fixation and suicide idealization. I had the second going on.

Just tried to do a video blog. But hey, I've got pneumonia and that shit apparently fucks up your vocal cords. And your throat. And makes me want to yank out my tounge because it hurts that much.

So I'm here at least another three days. I asked if I could decorate the room. Nothin drastic, nothing permanent. A few of my skull from my shine. Hell, maybe my Brandon Lee poster. The still screaming grimaces of the souls I stole in my days of dark power and crusading.

Did't say that last part. I've learned not to make ANY jokes in a hospital. They never get mine and I can't ever think of anything lame enough to say before I want to say something wildly inappropriate anyways. If there's anyhing I now know that I didn't before, it's that I don't know shit about shit.

Not a goddamn motherfucking thing.
quirkytizzy: (Default)

I say: Jesse, I think I made a disturbing mess. I drop the razor at my feet. Even as his face is twisted in horror, I know I would keep cuttig.

He walks in to the bathroom. I am covered in blood.

We go to the hospital. The front desk guard notices my fingers are dripping in fresh blood. He asked what happened. I shook my head. "I did", I mumbled. He stills my pen, gentle forcing me to stare into his eyes. "What happened? he asked.

"I...lost hope."

I tell him I don't want to die. I just want to make it stop. They reassure me that I just hit a breaking point.

They tell me that anyone else, pulling 20 hour days for 2 months straight, through this illness, the mental health issues...they said I am so much braver for not hitting this point sooner.

I still don't believe them. I am 35 years. I had gone decades without cutting. And I cut. What does that make me?

A child. A weak, weak child who failed to reach the one place that has saved her over and over again.

Or it makes me a human being who has a breaking point and I simply hit it. I will never be able to speak of myself in flowery terms, but I can follow the self-reproaching though with the real thought, which will always be the one that does not lead to self-loathing.


I spend in a screaming, irrational, hurling epitaphs, hair brushes, folders, and whatever medical equipment happens to be unlucky enough to be in my reach. This is because I have spent the the the last three days in a throes of a migraine so bad that I keep having to stop screaming in order to vomit.

This convinces no one of my sanity. I threaten to leave, but they threaten to place armed guards in front of the doors. This I remember from Cassie's attempts to AMA. I ask what happens. The nurse speaks in vague terms.


No one had any answers, save one. An AMA - even one - can prevent a non-life saving visit in the future. That they could turn you away from. That gave me pause.

I spat out "Sadistic bastards, every fucking one of you." and dove into my bed to try to not throw up again.

The nurses, doctors, RN, Jesse, all insist there are only two remedies for migraines: Regular strength tylonel, and morphine, of which I receive twice of and dislike greatly. Screaming the entire list of over the counter and other hospital treatments does nothing until the blood transfusion happens.

The migraine goes away when we do a 5 quart blood transfusion, complete with zofran.

All of them are astounded at the difference in my countenance once the migraine goes away. It seems a completely new reaction displayed by any human being, as if I ought to be drafted into a medical journal for my unusual display.

FOUR DAYS: FIVE NIGHTS: The psychologist has been by once and made her descisions on the massive battery of drugs (EXTRA sedatives due to the morphine in the migraine deal) that while I'm experiencing mental health issues, I seem otherwise fine.

Of which I am. After this treatment, I am Dandy Fucking Warhol. I am Fred Astair and Ginger Rodgers. I am Mary Poppins. I am every wonderful psychologing thing that I could possibly be to get the hell out of here and GET REAL HELP WHERE I GO TO GET HELP.

Not all mental health is created equal. My own mental health team is so on the ball, so connected and commutative with each department, that I'd forgotten the rest of the world has to do with tiny nibbles at a huge piece of cheese with an impossible circumference to circle around.

Funniest thing? After much discussion, all of the doctors decided to lower my sedatives...to the exact same dose I'd been telling them would work perfectly for TWO WHOLE FUCKING MONTHS NOW. I came in here, got rewarded with a three day migraine and a shitton of condescension about it, and got told that the very plan I'd come up with months ago ONLY COUNTS WHEN DOCTORS THINK OF IT.

I know I need I talk about the cutting. But this part just got me so angry, I had to get it out.
quirkytizzy: (Default)
I went to the lupus meeting, felt overwhelming gratitude, came home, and became the most depressed I'd been in ages and ages. So I took all my sedatatives, thinking fuck it, at least if I'm groggy and miserable tomorrow, maybe I'll be lucky and groggy and miiserable in a different way.

So it's like 5:30 AM and I am hours and hours away from actually "getting up" and I woke up to go pee and am find myself so irrationally angry and upset that I if I don't write this out, fucked up on meds if as I am, I won't sleep. Why? Why am I finally actually getting sorta good, up every 2 hours to go pee but whatever sleep and I am interrupted by this need to rage?

Cuz I hate myself, my life, my friends, or sleep just that badly. Something.

So expect verbal vomits, rage spits, and badly typed bullshit because this is what they all want. I'm just less bitchy less this way. Eaiser to control. What the fuck ever.

I am still SO RESENTFUL at the way my house was left when I got out of the hospital. I'd been in there hooked to machines for a fucking month, a fucking month, and I've been out for ANOTHER MONTH, and I'm STILL finding patches of cat pee to scrub out of things. I'd been trying to coordinate but everyone was so busy so I kept trying to make it convienent for others, which it never was, because why could you give a total of TWO HOURS to a friend who hasn't been able to vacuum?

So three weeks into, I finally broke down and gave Jesse and Willow (my bestest girlfriend) a cleaning list. I need help, I said. The place has to be clean for my mental health and oh yeah for the reduction of fucking infection.


Because both of them felt no need to scoop out the two lone litterboxes I have in a 500 square foot studio once than once a week. With Jesse it's even worse. He refused to do it, even when they started peeing on his sheets. The man changed baby diapers for 20 years, but just could not POSSIBLY FATHOM why scooping out litterboxes was a priority and GOT ANGRY AT THE CATS.

I'm serious. Both Jesse and Amanda were baffled as to why the cats decided to start using the bathroom everywhere but the litterboxes. THREE CATS. THREE HUNDRED FOOT LIVING SPACE. I clean those boxes out everyday and on the rare day it's every other day, it's because I'm feeling like dying. That's what normal people do. That's what HEALTHY people do.

And they were just plum confused and couldn't figure the darn thing out.

Three weeks into the stay, I was worried about my house. So I asked for help. I wrote a list to Jesse and Willow, my bestsest girlfriend in the world, who I know would move heaven and hell for me. This was my list. Pretty reasonable, considering the house was NOT left in this state. http://quirkytizzy.livejournal.com/1012724.html

THIS is what I got:See more )

And it took Brillo pads to scrub what was underneath all that bathroom space, too. Just as my nails had FINALLY gained a tiny bit of length. I was so depressed.

Oh yeah? And the sheets that needed to be changed because of my FRESHLY NEW BURSTED WOUNDS? Guess who begged out of doing that because his back hurt? Yeah. First night back. I flung back 20 pounds of pillows, blankets, and sheets and remade EVERYTHING, because while I was willing to shove my face in a slightly damp cat pee pillow, I thought cat pee and WEEPING AND OOZING SORES would be bad.

So I did that, too, about two hours after having to be wheeled out of the hospital. I couldn't walk properly at that point.

What's worse is that both of them managed to not only convince themselves that it was just tooooo much work to do for someone who had needles in her arm for WEEKS STRAIGHT, but HAD THE BALLS TO TELL ME that that they were also just trying to make sure I had something to do with myself when I got home. Sometime empowering. Something I could do and be proud of."


So I got home. I went into my bathroom and cried for a good hour. I spent the next 2 days, about 15 hours, scootching about in a lawn chair (couldn't sit up, couldn't sit down) cleaning that shit. And here's Jesse, the whole time, telling me over and over to just RELAX, STOP CLEANING, IT'LL GET GONE, YOU HAVE TO RELAX, YOU HAVE TO REST. That just pissed me off more because no, inside a month it didn't occur to you to wipe down the bathroom sink and change the cat peed pillows, so I was raging and raging and raging the whole time. Silently, mostly because I was supposed to be grateful for even that. But the most rageful silence one can imagine.

And I'm still raging about it, months later.

The cleaning thing still pops up, because while Jesse nearly exclusively handles the kitchen clean up and all of the cooking, he resents that the rest of the cleaning I do comes at time when he is asleep. Y'know, time and energy and spoons I could be using to spend time with him.

Just yesterday, after a round of nightmares that I'd just told him of, and he finally got up, I said Oh good, you're awake. Maybe now I can sleep safely. They almost never come when you're awake and I know you can wake me up and protect me from them."" he intoned "Oh good, more time you'll be doing something other than being with me."

Well, sorry motherfucker, but it's obvious I can't trust you to do the most basic of cleaning tasks when you have hours and hours a day by yourself at home while I'm working or working on not dying, so I do that shit right when I can do that shit. And considering my days, thanks to insomnia, run 18-22 hours a time, it means I get it when I have the most energy. That's right when that 22 hour day starts.

He argues it's because I just want something to do. I tell him its because it just won't get done otherwise and I already saw what came of that. Try to relax, he says. Relax in what, I say? What I came home with?

"Do you want to crucify me for that?" he asked last night. "You said those were David level messes and I felt so bad and then I saw pics of David level messes and it wasn't anywhere near as bad."

I'd also never been in the hospital with David debating just how many blisters I'm willing to bust open on my abdomen in order to get my Code Brown under control, you dickwad. Get some fucking perspective on the deal.

These next few rants are really questions of balance and control, which god I hope is a step in the right direction, even if it makes me insane. For the most part, Jesse has backed up in the want to control everything I do, be it for worry or whatever. He lets me do my cleaning when I want, overall lets me sleep when I can, (with minimal but always overwhelmingly annoying sighs), etc. I ask his input on food all time time.

But it seems as if he's swung the other direction and now it never comes up, except when we talk about how I've either got to learn more, or else rest more. The WAY he talks about lupus and CDK drives me insane. Half the time it's no big deal, just diet and doctors, and the other half of the time its going to kill me if I eat a Big Mac.

He's becoming so pathological chill about the whole thing that I'm starting to wonder if ****I'M**** the crazy one for getting upset about being sick. Just last night, on the way to lupus meeting, I said I don't know why I put on my makeup when I when I just know I'm going to cry it off.

"Why?" he asked, sincerely confused.

I, irritated because I'd literally told him seconds ago that I'd already had an up and down crying-sort-of-day, went "Uhm, because I have an incurable disease that no one really knows about and it might be total fatal and I'm scared?"


"Because I'm tired and the sand levees just aren't as strong and I'm feeling weak and vulnerable," was what I ended up saying. He nodded. He seemed to understand that.

Maybe he thought that finding a support group would cure me of my sadness, or maybe his oxygen mask isn't working and there's a crimp in the wire that's making him forget there's someone next to him who needs help HER mask, too. I straight up told him that the question of WHY made him sound like a psychopath. It was so damn creepy.

There's a goddamn middle with this disease. A fucked up, constantly shifting middle, mind you, but a fucking middle. Give me some fucking hope that I can FIND IT. Hell, he's even gone so far as to talk about how lupus and all that shit could be a freaking evolutionary advantage because look how aware of my body it makes me!

Yeah, let me just don a mask and a cape and go give people who look cold my kidney's doctor's business cards. I'll make Fox 4 news real quick.

He also likes to turn it into this wierd competition, mentally and emotionally, which is even wierder because normally I LOVE these competitions. I always win the "who has it worse" game. Always. I kinda feel like I win THIS ONE, too. He has debilitating pain, which I do not have.

Yet. But he always seems to match every anxiety attack I have with another one of his, clutching his chest, moaning. I talk about how I want to go out but am so tired, and the next thing we know we're talking about how to get HIS ass out of the house when he knows he needs social contact. I start talking about feelings of powerlessness over this disease and the next thing we know we're talking about ways for HIM to reach out to be empowered about self-care. It's maddening and making me want to open up less and less to him.

But morever, I'M TOO TIRED TO PLAY THAT GAME. I DON'T CARE. I DON'T REALLY GIVE A FUCK WHO HAS IT WORSE. Some days I can carry 20 pounds up the stairs, no problems. Some days you can't pull anything but your cane up the stairs. That's cool. It's less cool when it's BOTH of us having these issues, but we figure it out somehow.

So I come home, or he wakes up, and his anxiety attacks start spiraling, and I'm thinking that I if I shower, will I have to sit on the toilet to dry off because I'm too tired to stand on my feet, and I finally get out of the bathroom and he's moaning on his computer chair with a fucking anxiety attack and he says "It's hard to work through being this anxious and taking care of you, too."

Last night on the way to the Lupus meeting, Jesse said "I'm just trying to teach you-". I cut his ass off RIGHTTHERE and said "Jesse, I DON'T WANT YOU TO TEACH ME. I DON'T WANT TO BE TAUGHT. I WANT YOUR HELP. I WANT YOUR FUCKING HELP. NOT TO BE TAUGHT. I WANT YOUR HELP. There is a big difference. You're not an idiot, I know you know the difference.

I think it's the clearest possible way I could have ever said anything in my life. I have no idea if he understood it.

That's what I want. His fucking HELP. I've never been in his position and I can so very easily see where this would not be easy on him. I get snappy. I get so irritated. I get so tired.

But you know what? THIS IS REALLY FUCKING HARD FOR ME TOO. And I'm sorry you have to listen to me complain about it. I'm sorry that you have to listen to my feelings of self-loathing and confusion, over and over again. I'm sorry for all of this.

But I'm not sorry for me. One thing I'm damn not sorry for is for me.
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The insomnia becomes its own fascination, in its rights. Not so much a matter of how far it can pushed, because I've already hit that point several times. But both the quiet and the noise it can cause in my mind is boggling, as it can somehow manage to do both at the same time.

I get bored. I clean what I can, what comes quietly as Jesse slumbers. I go outside, flip on the porch light, do my nails. (The alcohol smell wakes Jesse, as it seeps through our very cheap and thin bathroom door.) I, of course, write. I stare at the sky, befriending Orion, telling time by where he is wheeled in the sky.

As the physical effects of such perfect insomnia accumulate, the cleaning slows. I spend more time staring than I do doing things. People assume chronic insomniacs must get tons done during the hours when all is dark. As if sleeplesness were some sort of superpower and the more we use it, the more apt we become with it. Sometimes we do. The physical side of it gets lost on most people - the part where they complain they didn't get their morning coffee and are just going to be soooo zombified today.

We lose other things. Clarity. Coherency past 2 PM. The ability to drive during errand hours. Small motor coordination. But mostly, we're just tired of being tired. I have stopped trying to make friends with the lack of sleep. Poetry, perhaps, but not friendship. It is simply a companion, willing or no, and I may as well learn to sit with it.

They keep telling me it is temporary. That this run of steroids, hardcore as it is, will be lessened eventually. There will likely be times I'll be run up on it again, as the illness swells and abates. But they promise me it won't always be like this.

After well over two months of this, I find my trust waning. I also find I have no choice but to trust them. They're the doctors, they went to school for this, I did not. Surely, somehow they know more about this than me.

I am now at my previous starting weight before all this happened. 141 pounds. (10.5 stones. That's a ridiculous number, you rascally Brits!) I'm even couple pounds under, to which is something I'll have to watch for. A dramatic decrease in weight will trigger its own problems. Food becomes less exciting when one is eating to live, not living to eat.

Though I'll admit to loving the return of my vanity. I know for some women, what they look like doesn't matter. It matters to me. I'm a vain, vain bitch. The day I realized I can wear my old jeans was a grand day of joy and abandon. The edema is nearly gone, sans the feet, which is also decreasing, and thus the temperature problems seem to be slowly stabilizing as well.

The outside is returning to normal. What frightens me is the inside, of which there is little way to immediately tell. The follow up doctors have not yet cracked a single smile at my return labwork. As countless supermodels have shown us, one can look spectacular on the outside and be two inches from death on the inside.

And while I loathe to quote Kurt (sorry folks, I just found him whiny), I'd like to leave a pretty corpse. But I'd like to be old enough to leave one of those pretty old lady corpses, thank you very much.

I'd mistaken the date of my first face-to-face lupus support group meeting. It meets tonight. I'd called the contact woman and set it up. She took my information, sent me a packet on my disease, and put me at immediate ease for my nervousness and slight hysteria. I am excited to go. I am still attending daily AA meetings (so much more on that), but Cinema, you're right, something specific to the ailment will do me worlds of good.

I will try to sleep during the day as to be somewhat coherent, and Jesse has already agreed to do the driving. I was reassured by the woman, named Rosemary, that a lot of their members come in cognitively confused. I'll fit right in, she says.

For some reason, I believe her. And right now, I could use something to believe in.
quirkytizzy: (Default)
Yesterday was a bad day.

Today will be a better day.

One of the things that these daily AA meetings have reminded me of is the Daily Promise. The Daily Commitment. The idea that one must re-dedicated themselves to sobriety every. single. damn. morning. It helps center us and helps us avoid big, dramatic scenes, which is a good thing for everyone.

So today, I am re-dedicating myself to a better day. I will soon eat a rice cake (unsalted, though perhaps with a touch of peanut butter) to quell the still nagging nausea, and accidentally leave my coffee outside, thus requiring me to microwave it back to acceptable, barely-tongue-scorching levels. All things will be as they should be.

Except for me being, y'know, asleep. Cest la vie. I am alternately both cavalier and desperate about the whole thing. We have already reduced one tablet of my steroids, which has not made a dent. When we rid ourselves of two of the three, at least for now, I can add hope to the repertoire of sleep preparations.

But for now, it's 3 AM. I am awake. Sunrise, sunset. So I do what any self-respecting, insomniac writer does - I sit and chainsmoke endlessly on the porch thinking of things to say on Livejournal.

I tell myself that posting the worst of the self-doubt and self-loathing is a strong thing to do. I tell myself that it only reinforces this terrible idea that self-loathing somehow equals self-awareness. That idea is a lie, and one I've struggled with for most of my life. I tell myself that fuck it, if people don't like it, they don't have to read it.

And I tell myself that this, more than anything, is a lifeline. In rough waters, in fleeing 20th story windows with flames licking behind them, it's going to hurt your hands. Skin's comin' off during that dire slide down. Your muscles are going to get pulled. Underwear will bunch up and if you have let go for those last few feet, you're probably not going to land on your feet.

But it's going to save your life, and even if it leaves you handless and footless altogether, it will have been worth it.

Is that a healthy thought? The idea that even if it hurts, saving yourself is still worth it? Or is the goal to avoid hurting yourself AT ALL, and if you've scarred yourself somehow, you've done it wrong????

My therapist caught me off guard this week and asked me what my goals were. I paused and asked if she meant my end-goals for therapy. She shook her head and said "in general. What are things you want to accomplish?"

I have no answers to such a question. One would think at 35 there would be some sort of goal - a better home, a better job. A child. A sense of fulfillment and of having helped people along the way. To know themselves better.

I have not settled on any of those, sans knowing I do not want children. But that's an answer only in the negative, which is not the same as having a goal itself. In any setting except for a job interview, I laugh and waive the question off, saying I don't set goals. Getting through the day is hard enough.

This is true. Lifelong poverty teaches you to not to plan for whatever calamity will wipe away today's stability, because there's always a calamity about to wipe away today's stability. Get what you can when you can. Desperation will take care of the rest.

Lifelong mental instability teaches you that there's only so far you can trust your own mind, so what it wants is faulty and requires constant second-guessing. That takes precious time and energy, energy that you're frantically trying to use to avoid calamity, so you begin to make decisions on flashes, on hunches. You just keep praying that this time the meds are working right, or that you got enough sleep, or that the free clinic doesn't cut back its services.

How does one plan a life on that? In pieces, I'd imagine. Being willing to take that strange new job (call center rep). Arguing with your psych about worries of sedative overdoses and then remembering they went to school for this so they probably know more about it than you do. Stash away 5 dollars at a time, though as a smoker, we all know that's damn near impossible.

But it doesn't lead to a goal. It just leads to a way of living.

Can a way of living be a goal?

Not only do I fear trying and failing to achieve goals, I've just really got very little practice in it. Very basic, common fear. Very basic, very common lack of experience. Its banality makes it no less terrifying, however, and the conversation between my therapist and I began to shift.

I told her that earlier in the hospital, I'd promised myself I'd take a dance class this year. She said that is a goal. That is an active thing I will have to plan for, promote myself for, and actually show up and do some work for. It seems the silliest of things, but she's right. It IS a goal.

And it's the only one I have right now. To learn a new, cool, graceful way of moving my body. It won't bring me stability. It won't quell or quiet any of what rages in the voices in my head. But it's something I have to do outside of my head.

Maybe that's the important part of setting goals.

Maybe that's the important part of life.
quirkytizzy: (Default)
After spending half the night being tormented by nightmares and the other half puking my guts out, I got the best hour of sleep in days and days. In the Walmart parking lot. No kidding. Waiting for a med refill, being too tired to risk any further driving, I just dropped the seat back in a sunny spot and closed my eyes.

I was out within minutes and woke up so clearly.

I'm doing something lately, something happened and it's never happened and it's changing everything how I see myself. Or it's about how I see myself, and it both destroys and rebuilds me.

Breakup songs...but about me. I hear breakup songs and imagine I'm singing them to myself. Makes sense on some level. Lost some part of myself when I got sick enough to die - illusions of immortality, sense of confidence. Anger at myself, disappointment, wild hope, a yearning to push harder than ever to make it up to myself.

But goddamnit, it's hard on yourself. It's depressing. It can be so violent. I feel like half the time I don't recognize myself even the words are the same things I think to myself. I shouldn't do it, but a person hears music the way they do, and that's how I'm hearing it these days.

I'm hearing this about me, because I'm the one telling myself all this.

"I can't tell you what it really is
I can only tell you what it feels like

I can't breathe but I still fight while I can fight
As long as the wrong feels right it's like I'm in flight
And right before I'm about to drown, she resuscitates me

She fucking hates me and I love it.

"Wait! Where you going?"
"I'm leaving you!"
"No you ain't. Come back."
We're running right back.

But when it's bad it's awful, I feel so ashamed I snapped
Who's that dude?
"I don't even know his name."

Now I know we said things, did things that we didn't mean
And we fall back into the same patterns, same routine
But your temper's just as bad as mine is

Baby, please come back
It wasn't you, baby it was me
Maybe our relationship isn't as crazy as it seems

If she ever tries to fucking leave again
Im'a tie her to the bed and set this house on fire!
" - Love the Way You Lie

And that's a lot of how I'm feeling towards myself lately. Seriously, I've heard that song a million times, always in reference to domestic violence, and now all of a sudden it's the argument with myself.
quirkytizzy: (Default)
So after all those pretty words, my brain proceeds to give me non-stop nightmares. It's like my head goes "Oh, wait, we're finally dealing with that icky issue we've been avoiding? ALRIGHT LET'S GO!" It will be me in med-groggy land all day. Admission one ticket, Quirkytizzy.

Jesse and I took an ER trip last night, but it was brief and not for me. He'd turned his back, felt a strange pain, and then a blossoming pressure against the back of his abdomen. Strange enough a pain that he had never felt it before.
But when he used the word "pressure", that's when I grabbed my purse. I was concerned about kidney stones. The pain caused from those has been likened to the pain of birth and can land you in the hospital for DAAYS.

We were lucky - it was not a kidney stone, but a particularly nasty back spasm. We were even luckier, as we were in and out of there in under 3 hours. UNDER THREE HOURS. THAT'S A FUCKING MIRACLE. I'VE NEVER EVEN **HEARD** OF THAT BEFORE.

So, it turns out Jesse is a magic man in many ways.
quirkytizzy: (Default)
There is no substitute for this. There never was. I just had to discover it, to stumble onto it. The original drug. The thing that took me away from me as a child, the thing that took me away from everything else as a child, the one thing that I could use to rip myself away from myself as an adult.

"Poetry is not a way out of yourself. It is a way INTO yourself. - May Sarton

That's this. That's writing. Words.

My wound care doctor asked how many degrees I had today - and it wasn't a joke. Apparently, sometimes I talk all kinds of pretty and smart and use multisyllabic words in casual conversation. It was a wonderful compliment. It was only a slight sting to reveal that I had attempted college, but never received anything outside of a foolishly self-inflicted low credit score.

"We do not claim perfect adherence to any of these principles, only progress. - AA

I've been attending nearly daily AA meetings. I am sleeping better, but I'm still up at 4 AM, max. I take the 6 AM meeting, a form of starting the day with an hour long meditation. The help, the calm it induces, has been beneficial in ways that waiting days between therapy would ruin. So much there to speak of. So much of which I am far too tired to to do so, of course, but eventually.

I know what I'm really afraid of. To name the terrors and the consequences that I want to avoid....if I can name them, I can write them. If I can write them, I can experience them, heady and real. I can write them, I can ink them into my body to give me a roadmap, or I can exhale them like smoke signals. They can become roadflares, not bonfires. Signposts, not roadblocks. And this is what I'm really afraid of:

What if I can give it all up? All of my anger? Of my bitterness, the grudges, the pain I have used to build the core of my strength? What if I manage to work it down to some level where it has no place in my life....and it turns out later in life I NEED it, but DON'T have it anymore?

My rage is so precious to me. My faith in using pain to overcome pain is sacred. It has held me together for so many years. I do not know if I have anything to replace to that, or if I could learn, if it would be as effective.

I do not ever want to lose my edge. The edge is what helps allows me to carve off the sharpest parts, the parts that would kill me, and leave them discarded, bloody and rotting, to the side of the road. If the turmoil, the forever, permanently boiling and roiling waters just two scratches beneath the surface settles....

will what's left be able to do the same job of keeping me strong? And how much more will it hurt if I can't find something that does the same thing?

Both Pat and Jesse say I am running ahead of myself. I've had enough tragedy in my life. There are parts that will never ease. Jesse likened it to a chimney - the chimney will always be there. There is and never will be a lack of firewood to chuck in and stoke the flames, should I need them. Pat echoed very similar sentiments.

I came to being able to put words to this while in a meeting. The topic had been emotional sobriety, the ways we use the tools to keep us emotionally fit for balance and hope. This is how I knew what I am really afraid of, at least right now.

There will be many things to fear down the road. Letting go, or working on, or even considering the possibility of living our character flaws in different ways, can be such unknowns. They are for me.

What will I lose if I decide to change such an integral part of how I handle my pain and strength? Can I handle it?

That's what's the words are for today. They are for naming the fears. This is the original drug. Medicine. The better drug. The one I can get better with.
quirkytizzy: (Default)
So my nephrologist tells me I am to take a Tums before each meal. It helps binds phosphates, she says, which will help ease the load on my kidneys. So I do. And so this is the conversation that followed with Jesse:

ME: So, basically, the Tums takes all the food I eat and turns it into a small point of singularity in my stomach?


ME: And my butt's the black hole it's pushed into?


ME: Science, bitches.
quirkytizzy: (Default)
You're right. You were right. I read your last comment and groaned. I shoved myself off the keyboard, rolled my eyes, and went "Goddamnit, she's right. She's right, y'know."

So with Jesse's help, he hunted down the only face to face lupus support group in this area, which meets Thursday night. I am scared and excited to go. I am also, as of this moment, going back to the entry where you left all those links. There was an active message board on one of those links.

You're right. I can't pin this one on all of you, even if I can share it with you.
quirkytizzy: (Default)
It's not badly made Malt-O-Meal, it's grit soup.

Or at least that's what I'm telling myself. And not a moment too soon, as Fruend, I got your gift! At first I received the email and I wasn't sure and then the mail came. THANK YOU.

Food has been, hands down, one of the most stressful part of this whole thing. Certainly at least figuring what foods, because while they give you five million lists, the lists don't come with context. Or name brands. Or substitutes. Or...anything but words of foods that one should avoid (easy), eat in moderation (in whose measurements?) or with wild abandon...(dude, that word is so dangerous).

And organic food, or food that has to be assembled hand up, start up, is pretty much all I can eat right now. The service that you got me started with? That's exactly the service that can help us do that.

Thank you, whomever sent this wonderful chance for both Jesse and I to really start seeing what's out there and how to take advantage of it. Believe me, it's going to be worth it. Every bit of it.

Even moreso because we are, at the moment, down to some very nearly expired grapes and I thiiiiink???? some rice? left? maybe? in the fridge? Some green beans? Half of my grit-soup?

Thanks to deciding to take all the drugs that my doctors are giving me, I'm half-under incoherent sedation a good chunk of the day. I'm not entirely sure I managed to get my short term disability switched to long term, since...

I still haven't gotten paid. In about two months now. I try to hang in there, wake up early (or nap if I wake up TOO early), but there's no communication between work, or Metlife, and there's been an insurance mixup at the pharmacy, which likely means I did not file my extended claim properly.

I've been at zero income before, many many times. I've never been at a zero income when I needed things like medicine and insanely specific foods before.

This is a new kind of poverty.

I'm doing what I'm supposed to be doing (taking all my pills, attempting to just put up with side effects until they go away), which is actually messing up my ability to do what I'm supposed to be doing. (Making my calls and filing the proper paperwork so I can do things like go get food that won't put me in the ER).

Because normally when this happens, it's nothing to spend a few hours hitting up the food pantries in this city. I straddle both a very poor and a very rich county line, you can sometimes score AMAZING and PLENTIFUL food for free out here. But all of a sudden, I can't eat what you find in the pantries, since you're never sure what's going to be there to start with.

So now winging it is out of the question. My whole "drop everything and just start snatching at straws" survival techniques are out of date and could literally kill me at this point. Even my basic survival skills are going to have to change now.

That's a whooole other entry. But yeah. That. Oh, so that.

So thank you, Fruend! I will eat green beans and rice today and be damned happy that I can. And Jesse and I are going to pour through the catalogue and see what other wonderful foods we can also be damned happy about eating. THANK YOU!


quirkytizzy: (Default)

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