Tug of war

Another 20 hour sleep day yesterday. Knowing what I know now, I am amazed and aghast that I somehow fought through it during those last few months before diagnosis. Granted, that was three hours of being awake before work, one hour of being awake after work, and a whole lot of avoiding anything social or conversational with anyone (including Jesse), but still. Compared to what I let my body rest as today, it's pretty astounding.

There's a lot of comparing that goes on about me lately. Jesse compares me-when-I-met-him in 2014, doing well, lots of energy, to me-when-I-was-sick-and-didn't-know-it (starting about February 2016, losing my hair and all energy), and of course, the the-current-me-now-that-we-know-I-am-sick.

I do the same thing and the images, while superimposed, never line up at the edges. I guess that's the whole point of the past, or else we'd never move on, but it's still confusing. It makes it very difficult to make any kind of real guess as to what the-me-when-I'm-better will be.

Jesse, ever the optimist, imagines I'll be just as bright and cheery and mobile as I was when we met in 2014. I am far, far less convinced of that. Chronic illnesses can be managed but they do not go away, and nothing will make the fact that my kidneys - and all of the consequences of such - failed.

That part's not going to go away. Ever. To some level or another, it will always affect me. This isn't the same lupus I had when I thought I had a stress rash with David. This isn't the same lupus I had when I was wearing sunglasses at 11 PM at work to quell the migraines (to which, taking calls while wearing sunglasses, indoors, at night, feels REALLY WIERD).

This is a different lupus altogether and thus what it feels like is going to be different, too. I don't know what or who I'll be, but I'm pretty sure I'll still be slower, still be tired, and still have to deal with the progression of a degenerative disease.

I think that part scares Jesse. Degenerative. It scares me. I have no idea what that means for the future. Will my flares get worse even as they may become less frequent? Will I develop muscle and joint pain? Will I require further and further batteries of medication just to battle the age of the disease? Will other organs fail? How susceptible to cancer will I be? We don't really know. Science doesn't really know, either. Educated guesses is the best we get.

Jesse's optimism can be frustrating, but I imagine my grim-ness gets just as frustrating as well. There's really no other word for it, for how I get when I think in depth about it all - I get grim. It's my nature to scoot right past the silver linings and only see monsters in the clouds. (I never see things like rabbits or dragons when I look at clouds - just monsters chasing each other. Take THAT, Rorschach test!)

It's an odd sort of balance between Jesse and I - and it really doesn't feel like a balance yet, more of a tug-of-war. I have faith that it WILL eventually balance out, that he will eventually become more realistic and I will eventually become more hopeful.

In the meantime, though, it makes for some pretty long discussions between the two of us.

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So this whole sun-exposure-symptom I keep hearing about is, indeed, A Thing. A couple of days ago, Jesse and I spent nearly three hours in the sun. Yesterday, I slept 20 hours. Of course, it was still 20 hours being broken up to every two hours, to pee, to eat, to whatever, so not as restful as one would think. (Me? Sleep more than three hours at a time? AHAHAHAHA!) But it was a bone tired, muscle weary kind of sleep. I could't have been happier as a vampire in a dark room with dark curtains kind of sleep.

That sucks, since I kinda love sunshine. Especially in the winter, when the grey days press in. Apparently sun lamps have the same effect, so I'm facing the next few months knowing that when the depression comes, there's even less I can do to treat it now.

They say to wear sunscreen, which I will now do religiously, but they also say that sunlight even gets through the clothes. We're not quite sure WHY it causes such problems, outside of the fact that it makes the bad cells grow faster. I guess I will just start taking Vitamin D supplements.

Assuming that also doesn't hulk out the bad cells, at least.

It's kind of fascinating, the way lupus does the body bad. There's a class of cells responsible for snagging dead cells and pushing them through the kidneys, which gets processed as waste.

Well, with lupus, those cells take the dead cells and attach them to HEALTHY cells, which then both get eaten by the kidneys. Not only does it destroy the healthy cells, but it makes the kidneys work twice as hard since they are dealing with twice the number of cells.

So my body literally cannibalizes itself from the inside out. I've seen charts and the visuals are oddly impressive. And these little misguided bad cells are hardy as hell, much stronger than the healthy cells designed to do their good things. It's like even in my sickness, there is a strength there that outmatches everything else.

In a twisted way, mind you, but still, there it is. Somedays I am able to look at the sickness in an almost intellectual way. A trip down some fascinating highway, like a Magic The School Bus sort of way. Look at what my body is capable of accomplishing, even in the pursuit of utter destruction! Somedays at least.

Last night my blood pressure dropped TOO low, leaving me to feel as if I were falling through the bed. I got up, ate, paced a bit, had a cigarette. (A cheap and dirty way to raise your blood pressure, even as it ultimately has terrible consequences for it). Low blood pressure happens so rarely for me that it took several minutes to identify it. I suppose I'll get better at that, too.

There's still so much I'm learning to identify. Sunlight and fatigue? Didn't make that connection until months in. Low blood pressure? Only reason I knew what it was was because a nurse once administered a medication that dropped my blood pressure too low, and it felt exactly like that. The only way I learn something is by running face first into the glass door, getting wobbly and seeing stars and going "Oh, maybe THIS has something to do with lupus?"

Nothing about this disease seems intuitive.

It's a little after 5:30. I've given up on sleep, as it's now standing less than an hour in between get-ups. Wouldn't be so bad, except 30 minutes after I crawl out of bed, all I can do is lay back in my chair and doze.

Which doesn't translate to sleep, either in chair or if I move to the bed.

God, no wonder I'm so crazy. I nap during the day (two to three hours at a shot, because that's all Teressa apparently deserves), and nighttime sleep turns out to be just naps, too. You wouldn't think broken sleep couldn't affect someone so much.

I guess it just takes a few months to do so, which it's very well been so.

Maybe I'll just go to Denny's and have a cup of coffee there. Watch the sunrise from the relatively safe womb of a concrete building, assuming I sit away from the windows. Order a couple of pancakes. Something to do. They're open 24/7. Drag along the IPAD, write a little more.

Fuck if I know. Something to do other than sit in this dark room, on this chair, facing nothing but this damn computer screen in front of me.

And Cinema - you're right. You're always right. So much to the message that you wrote, but you're always right.

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I'm tired of talking about my lupus.

But everything I do is curbed, tempered, or controlled by it. Everything from how well I'm breathing to how many hours a day I am awake. There is no escaping it. I twist and turn to try and get away and it just shoves its face into mine and goes "Nah nah a boo boo!"

How do you not let a disease define you when it defines damn near everything you DO?

I'm tired of talking about the insomnia, which despite the Valium, still has me up at 2 AM (though I can go back to sleep much easier now.) I'm tired of talking about the medication, which even if I DO go back to sleep, wakes me up every half hour due to the diuretics.

I'm tired of talking about myself as if I'm this thing covered in a web that I'll never get out of. I'm tired of a lot of things.

Jesse says that activity wise, I am doing so much better than I was six months ago. That may be true, but I so often feel worse. Or at least far more at the mercy of my body than I did before. Before I just fought through it, no matter how miserable it made me. I managed to keep most of the same pace, frantic and survival level as it was, that I've had most of my whole life.

Now I'm still miserable, but I'm also slower.

It's funny that I should write this after having a run of relatively good days. I've been pacing myself, napping when I need to, staying up when I feel well, and the nausea has stayed in the background. But sleep was especially broken last night and thus Teressa feels a little broken.

I keep waiting for an epiphany. Something that will make all of this make a little more sense, because often, NONE of this makes sense. It doesn't make sense how I got this, it doesn't make sense how it's treated, it doesn't make sense of the things I need to do TO treat it, and it doesn't make any sense at all as to all the ways its affecting me.

I get bits and pieces of how things fit together, things that carry me - often through the words and health that you guys give - but that something earth-shattering is missing.

Maybe the point is that life isn't earth shattering. Or at least it shouldn't be. I don't know.

All I know is that I am waiting. Waiting for what, god only knows. And god only helps them who helps themselves, so I could be waiting a long time. But I am waiting, and in the meantime, writing myself sick of the same damn thing over and over again.

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Maybe the trick is

I sometimes wonder what it is that keeps people around me. The list of character flaws that manifest daily are miles long, while the parts that shine only seem to break through so brightly because of the negatives.

I understand that's life in general, at least to some extent. But somedays, what constitutes "putting up with me" must overwhelm anything positive that swims to the surface.

These are things that very few of you here will know about, because here is the place where I can comb through the sympathetic parts, the parts where you can believe that on the other side of your screen exists a cracked but relatable human being.

Cracked, yes. Relatable? Not often - and especially lately. I'm short tempered, snarky to the point of being mean, I snap at those around me constantly. I'm quick to anger and more often than not, slow to let go of the irritation. I'm not a nice person. I'm really, really not. I'm kind, I'm compassionate, but that does not translate into being nice or even entirely respectful of those around me.

Ben, you know that one well, as much time as we've spent together. I'm often not friendly. I fall into funks that are impenetrable - and I fight anyone and anything that tries to break through. I consider myself a terrible curmudgeon. Cheerfulness is not a trait I possess and I am impatient to the point where I will blame people for things that are completely out of their control.

So I'm strong. So I'm a survivor. So I hold onto enough hope to keep from killing myself. What does that translate into for my daily life? Little but snappishness and feeling bad about sleeping away the days. I am morbid and creepy and not always in a whimsical, Addams-Family-sort-of-way, and have a hell of a time not talking about things that make others terribly uncomfortable.

I know I'm sick lately, and have been sick for a long time without knowing it, but even I'm beginning to sick of basting in my character faults. I know I used to be more fun, more funny. I could do things that I cannot now do. And it's affected my personality. I've become so much more serious.

I don't laugh or smile much these days. That must be so hard for my loved ones to put up with. I'd asked Jesse if I really WAS as an open a book as I thought and he said "No." I used to be, but then over the last year of being sick, I and the things inside of me began shutting down. There are expressions that are now unreadable, words that tumble out that don't convey anything other a snapshot and not a full picture, and a general distance that just wasn't there before.

And then after that thought, the snappishness comes and I think "Well, no shit, Sherlock. If they don't want to deal with my reality, then they can just not deal with me at all."

And then I go to sleep or find a place in my mind where I can erase the minutes and pass hours into emptiness.

These are things that you all will never see because it takes daily living with me to see. Maybe it's this way for everyone. Maybe I make myself a liar everytime I write something pretty here, maybe I'm just an unhappy person stuck in an unhappy situation.

Maybe the trick is to be able to pull out the pretty and put it somewhere, maybe the trick is to learn how to be prettier in my personal life. I don't know what the trick is, only that it seems to be a trick. An honest-to-God trick, something one cheats on, an illusion you cook up while distracting your audience with balloons and banter.

I wish you guys could see these parts of me. I'm so glad you guys can't see these parts of me.

I want to be a better person. I don't know how much of this is wrestling with being sick and how much of this is just normal soul-searching. But the truth of it is, no matter how strong I am, no matter the light my soul lets through, I'm a massive dick in my daily life.

I mean, really, I'm a total asshole.

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Minds and metaphors

"You can't wake up, this is not a dream
You're part of a machine, you are not a human being,
...you run on gasoline....
" - Halsey, Gasoline

On the surface, it looks perfect
Underneath, it's just a perfect storm
" - Icon For Hire, War

The mind is a metaphor. The brain itself very real. The mind itself a complex, twisted, tangled mess of thoughts, feelings, things that have no physical locality, but influences every vein of every action we take. It is a ghost, flitting through our gray matter with no regards to doors that we shut on places we don't want to go to, things we don't want to think about.

Places we desperately want to go but don't dare to, lest we forget to leave breadcrumbs in our wake and cannot find our way back.

My mind is a metaphor and there is a ghost that wanders there with impunity. I cannot touch it. Yet it has the ability to shatter light bulbs, plunging what should be familiar into a carnival blackness, glittering only with distorted, funhouse mirrors. Smash one to find out it's not the one that's really you, smash another mirror to fruitless effect, keep smashing mirrors until your arms ache and you, exhausted, have to drop the sledgehammer.

There's always too many mirrors and I never manage to hit the right one.

That's assuming what I really want to hit is me. That's up to the ghost. I don't get to decide that. It's what IT wants. What the mind wants - and she's a tricky bitch.

All of this? Never far beneath the surface. The sanest of moments wouldn't take long to drop down into this, into giving credence to the madness, to the mind, to the things that are real only because they have no real place to be.

Am I being honest or am I breathing life into a creature that stares at me from some abyss? You are right, the darkness has eyes and it will, eventually, begin to take interest in your gaze. But I've lived here for years, staring contests between what eclipses the light are a frequent occurrence. It knows me as well as I know it.

Know thy enemy - assuming the enemy is me, a shattered part of me, a part that I chase down in isolated moments. It is a part of myself that does not exist anywhere but breathes through every pore. This mind, this metaphor, this ghost.

I haunt myself.

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(no subject)

Things that irrationally annoy me:

* Escalades. This monstrosity, for my UK folks (Double the irritation if it's a tiny, blonde, obviously-well-to-do lady driving it.)

* Being thirsty AND having to pee at the same time.

* People who back into parking spaces.

* People who eat peas with a fork. How do you even do that?!

* People who have strong opinions on whether or not the microwave timer should be cleared after each use. It's, like, one button press to clear it. What's the big deal?

* Minions. I've never seen the movie, I don't think animated, bright, booger like creatures are cute, and I don't understand how they've become the FB meme of the century. (Double the irritation if the pipsqueak is saying something that's supposed to relay toughness. Nothing is LESS tough than a pint-sized urinal cake wearing goggles.)

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Heard an evocative phrase on my lupus support board yesterday. "Without the test there is no testimony." This statement smacks pretty hard of positive thinking - and it certainly implies that bad things happen to give us strength and growth.

These are concepts I LOATHE.

But the statement was so simple, so poetic, that it gave me pause. We all know there IS strength in adversity, that surviving whatever "tests" us (ignoring the idea that our adversity is a grade-school, cosmic lesson given by an insane, cosmic teacher) can and DOES bear us witness to grand and large things within ourselves.

The trick is that sometimes those grand and large things are not always good. Sometimes what's revealed is not a happy-go-lucky attitude, or strength, or anything of that nature. Sometimes what's peeled away leaves raw tissue, burning at the slightest touch, wounded and seeping blood.

I guess that's where we bandage it up and wait for the scar tissue to develop. Maybe that's when it becomes strength.

But would I be me without all the adversity I've faced? Without the "tests"? There are days I don't like myself very much, but I do LOVE myself - and part of that is knowing that I've made it through everything bad that has ever happened. Made it through and managed to make a life, as small and simple as it is. That whatever has "tested" me has not failed me. I don't think I've earned an A in the long run, but I've got at least a passing grade.

I've borne witness to and have many testimonies. Is it just something we tell ourselves, a tool to get us through the hard times? Would I have that, that power, without the tests? I am suddenly unsure.

It's a funny little thing - I noted to Jesse some time ago that it was a damn good thing I'm a recovering alcoholic. Kidney failure, not to mention the bevy of meds I'm on, and booze do not play well together. In fact, they play so poorly together that one or the other, when mixed, winds up putting you into the ER and possibly killing you in a quick and grotesque manner.

I avoided having to change that part of my lifestyle by giving it up 15 years ago.

Jesse said maybe that's why I became an alcoholic to start with, so I could be in a position where booze wouldn't be a problem when the lupus inevitably showed up. This is not what I believe. Coincidences happen all the time, they are not necessarily cause and effect, nor do I think they influence each other.

Still, it's an intriguing concept.

Hm, the Valium does make me hungry upon awakening. Average side effect of most psych meds. Some watermelon or a small bowl of oatmeal will take care of that. We are now two-for-two in Valium keeping me down for a solid six hours. This is momentous. And I really like how gentle it is. Jesse joked that everyone loves Valium, and maybe they do, but man, where it would put others into an altered state of mind, it puts my body into mellow-and-sleep mode. That's waaaay more precious than chasing a high.

And getting high is no longer an interesting concept at all.

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Who am I supposed to make fun of now?

I'm bored. Like, really, really bored. Bored combined with a touch of fatigue, which makes things like cleaning or crafting hard to work up to. Maybe I'll play some Mass Effect.

Times like these I consider hitting up David's twitter, just to stir my shit up. And then I remember that all I'll be doing is confirming that he's miserable, because David is an inherently miserable person. And that's just not as entertaining as it once was.

It's not entertaining AT ALL anymore. It's boring. It's like shooting fish in a barrel. It'll be a ton of anime pictures, a bunch of selfies with the tags "I'm so ugly! Why does anyone think I'm cute?!" (for reals, he became THAT kind of girl), and the occasional suicide/self harm threat. It's too easy.

And boring. That kind of self-induced self-hatred is singularly boring. It's the same conversation over and over again. The tune never changes. It just doesn't do anything for me anymore.

Who am I supposed to make fun of now that my illness has got me all straightened out, laughing-at-other-people's-self-inflicted-misery, now?

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(no subject)

So it's Valium. We are now down to the brass tacks of sedatives, as I've run through nearly all of them without effect. We briefly discussed Thorazine, but (1) expensive and (2) scary. So Valium it is.

It seems unremarkable, though it did keep me down for a solid six hours and then again for two hours. This is worthwhile. I expected it to hit like a ton of bricks, especially combined with the Seroquel, Clozopine, and Lamictal (not to mention my Cardivol, a blood pressure med I take at night). Rather it was more of a slow and steady rate of relaxation before I fell asleep. It was slower and easier on me than my Xanax, even.

Night one, but so far a success. I hope this holds out.

It's funny - here I am, stockpiling several meds that script junkies would give their left arm for, and not only do they not get me high, it's easy for me to give them up, switch them out for another medication, etc. But downers were never my thing. A prescription for Ritalin would be an entirely different story.

I'm going to make this a good day today. I have no idea what's on the plan, but I'm making a descision: It's going to be a good day. Besides, I'm watching "Call on Me" by Eric Pryde. It's hard to be in a bad mood when watching super hot ladies doing aerobics to an upbeat EDM sound.

I mean, seriously, aerobics was pretty hot.

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Psych appt in an hour

So it turns out lupus the disease is, indeed, named after lupine, as in the animal, the wolf. The rashes and various lesions mirror some kind of wolf markings, I guess.

So what I've essentially got is a very angry wolf totem. Thanks, Universe. If I were so spiritually inclined, I'd begin adorning myself with wolf imagery, except that I believe lupus is a disease, not a spiritual calling. It is not a thing to befriend or to try and make conversation about growth with. Lupus is a thing that needs to be aggressively treated and hopefully, someday in the future, eradicated.

Still, as mysterious as this whole thing is, at least we've got a cool name for our disease.

"Our". Yeesh. Me and the mouse in my pocket.

And you guys are right about the positive thinking - especially it being a strangely strong Western affliction. Something to do with our "go forth and forage" spirit, the whole "Anyone can be a millionaire if they just work hard enough" individualistic, boot-strap bullshit. I'm not a good liar and if I don't feel good, I don't cover that too well, even if I WANT to. I'm an open book naturally, inscrutable is not a word that could be used to describe me. Like, at all.

So it conflicts, because even as I know all that, I am still a part of my culture, having saturated in it for 35 years now, and my culture promotes positive thinking as The Great Panacea. I go round and round between tossing off the mantle that I KNOW to be false (positive thinking as a cure) and then feeling guilty for lobbing it off at all.

And yes, Disgruntled, if you could send me those links. Could you send them in a message? Don't want them to get lost in the comment section as the days go by. I don't know how to do any of those programs and those seem pretty useful - especially self-paced. That's something useful that I could do, low energy and all.

I really like how you put that, Cinema, becoming a tourist in your disease. Outside of journaling the days, which I do extensively, I don't record much else about my symptoms. Something easy to check, like charts. And I sure as hell don't monitor my diet anywhere near where I should - I leave that up to Jesse, as he is the cook. He said he likes helping out that way, and I tell myself (reason or justification???) that I should let him help and then not worry about it.

That's probably a pile of bullshit, as that's probably putting the effort of recovery on someone else's shoulder. Right????

My online lupus support group is invaluable and used frequently, (based in the UK but hey, it's the internet - no one is from ANYWHERE here), but there's still so much I don't know about this disease. I wish my face to face support group met more than once a month, but it's always informative and connective when the meetings are held.

I have an appointment with my psych today. We will see how it goes. My psych is famous for being distracted and rushing his patients. Not today. I have two pages of a med list I'm going to hand him and we're going to talk. We're going to talk about options for sleeping meds and reducing the insomnia of prednisone. We're going to talk about medication interactions. We're going to talk about a lot of stuff and he's going to listen, like it or not.

I'm no longer a doctor newb. I know how to get what I want out of my medical professionals, or at least where and how to steer the direction. Dr. Cannon, please welcome your newly revitalized patient - she's got lupus and she ain't taking NO for an answer.

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