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I think I figured out part of why Jesse has the idea that things will go back the way they were before I was sick.

Jesse is an optimist. The brightest optimist I have ever dated. Even David and Pat, both prone to moodiness, had general positive thoughts about people, life, and the future. It used to amaze me.

Jesse's optimism outstrips them both. Despite his chronic pain, his anxiety, has one of the sunniest outlooks on life that I've ever seen. I don't know how he does it, but when he looks out into the world, he sees this vast expanse of light and possibility. He sees strangers as people to get to know, new pains are seen as ways to clear out old pains (emotionally), and that when all things boil down, Gods will find a way to help and rearrange things just in the nick of time. He has such faith, such belief, such certainty in the idea that Life Is Good.

It can drive me nuts, but it's a huge part of why I love him.

I'm a pessimist. We have similar backgrounds. Nail polish. I've got to be Fate's favorite target. Basic stream of conscience jumping around. )

I just remembered something else I used to hand Fate to later bitchslap me with. Having done so much damage to my body with the drugs, I would also say "But watch - what does me in will have NOTHING to do with what I've done to my body. It'll be completely unrelated. That'll be just my luck."

Lately, I'm becoming a bit paranoid to what I say out loud to the Universe, terrified of what kind of ammo I'm unknowingly giving Fate now that's gonna curbstomp me 10 years from now.

For someone who isn't spiritual, I damn sure am superstitious.

Tug of war

Dec. 8th, 2016 12:57 am
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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.


Dec. 7th, 2016 02:39 am
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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.


Dec. 6th, 2016 06:43 am
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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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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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"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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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.)


Dec. 1st, 2016 02:44 am
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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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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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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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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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I feel like I'm wasting time.

I spend most of my days, outside of attending to housecleaning and errands, traveling between the computer and the bed, shaky, dozing off, cradling ice packs, and feeling, in general, unwell. I know this is part of what being sick entails and I know that the rest is far, far more needed than anything else.

But I've been out of work for four months now. I'm going to be out of work for a few MORE months, bare minimum. I have all this time on my hands to do things, to learn things, to practice and brush up on and become better at and all I can do is nap between housecleanings.

I want to be the sick person who discovers a new passion for painting or cross-stitching or something. I want to be the sick person who takes all of their newly available time and volunteers for their cause. I want to be the sick person who makes use of their time. Doing what **I** do just feels like a form of self-pity.

And while I'm quick to admit that I'm still playing pin-the-tail-on-the-lupus-donkey at my pity party, I don't want to be that person forever. I don't want to go back to work and look back at this time and go "Man, I could have been doing *insert X* and now I can't because work eats up my time."

Or is that even something sick people think when they return to work? I don't know.

Never having been this sick before, I do not know.

Also, benice, thank you for the LJ time. I can now have my favorite picture of myself back up. It sounds silly, but it makes me smile, something to work back up to. Thank you for giving me that.
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(insert bitching about nausea)

(insert bitching about insomnia)

(insert bitching about lupus)

And that's all I have.
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When I am ludicrously rich, I will buy a toilet seat warmer. You know, the kind you install on your toilet to make the seat a comfortable warm sit down instead of a jarring shock that freezes your pee.

So last night, after violently upchucking everything I'd eaten that day, I decided to take a phenergan for the nausea. It is a suppository, done so that way it cannot be puked up. The nurses at the hospital made a big deal of it when I got the prescription, as many people won't do it.

Me? If my world is spinning so much that I'm going to disgorge what feels like every internal organ, I don't care where the medicine goes, so long as it works. I dislike the initial burn, but hey, small price to pay to keep your stomach in your freaking stomach. I can see where other people wouldn't do it, but man, when relief is just 15 minutes of butt-discomfort away, phenergan is da bomb.

Unfortunately, I'd also thrown up all of my night meds along with the delicious chicken salad and smores cereal, so I had to retake them. It's a bit tricky when this happens, because you're never quite sure what or how much you've digested. A nurse told us it's within the hour - if you puke within an hour, retake the meds.

But I'm always worried about a small overdose, so I took a much smaller dose of my sleeping meds. Good thing, too, as I think more than less had been digested and I'm going to be dealing with Seroquel grogginess today. The blood pressure meds I have to retake, so that my heart won't shoot off into space while I sleep.

Being sick is complicated.

And I am sick. Cassie and I had gone shopping yesterday and upon arriving home, I laid down. The two and a half hours had wiped me out, to the point where my breathing was labored. Jesse and Cassie were putting up groceries and said "It's okay, she's gonna fall out here in just a few minutes anyways. She needs to rest, so we will just let her rest."

And for a second, for the briefest of seconds, I was offended. I am not a delicate flower that needs to be gently set down lest its petals get crushed. I am not an invalid.

But then I realized they were RIGHT, I WAS going to fall out in just a few minutes, and that's EXACTLY what I did. What I had to do. I had to just lay down on the bed and rest. I was so tired I could barely talk. I didn't want to rest. I wanted to join in on the conversation, to move around, but my body had just plain fallen down and wouldn't move an inch further.

And that's now part of the routine of living. It's built into people's expectations. It's part of the plan when planning things. This is supposed to be a good thing - and I suppose it IS. It means we are allowing myself and my body the limitations it now has. We are learning how not to overtax ourselves.

But it also means the disease is familiar. Like it's been accepted somehow, though for better or worse is always a coin toss. Some days it feels like a healthy acceptance and other days less than a healthy acceptance. Y'know, a "This is just you learning a new normal" versus "Your body is broken, therefore you are broken" sort of acceptance. It goes back and forth.

Somehow, that comment - made offhand and without any ill intent at all - made my lupus far more real than anything else has. It's always the small things that drive the big things home.

Lupus has stolen things from me. My energy, already low and unpredictable. My food choices. The appearance of my body. I'm lucky in that I get to miss out on the (as Barbara Einreich put it) "tyrannical cheer" expected from patients of serious diseases. Most sick people are supposed to take their illnesses in stride, to be strong, to be inspirational, to be positive. That can come with a terrible price and it can bury the patient into silence and denial about the grieving processes of being so sick. To stuff all of the natural anger and sadness and just general "oh god, I feel so awful" that being sick generally produces.

I haven't run into this with lupus yet.

This is mostly because no one knows what lupus is, though, and no matter how hard I try, I cannot think of a single thing to be positive or thankful about with lupus.

I don't believe lupus is a lesson or a pathway to a better, kinder Teressa. I don't believe lupus is a sign from the universe telling me to slow down and smell the roses. I don't believe that lupus is anything other than a destructive, maddeningly random disease that destroys and maddens its carriers. I am such a carrier.

I don't feel ashamed for my lack of gratitude for the disease. I don't think anyone around me feels I should be more positive about it, either. Or if they do think that, they've been smart enough to not vocalize the thought around me. Promoting positive thinking has always been a hair-pin trigger way to start an immediate argument with me.

Promoting positive thinking when I've thrown up an entire day's worth of food and had to shove a wax medicine up my ass just to temporarily quell the puking? That's, like, hair-pin trigger rage conversation right there.
quirkytizzy: (Default)
September 20th, 2016, 07:41 pm At the time of the following quote, we are smack dab in the middle of a manic episode.

""I'm not going to ruin anything. But dear god, does it finally feel good to have the energy to do exactly that if I really, really wanted to."

Except I DID ruin something. My skin when I cut myself. When the roller coaster took its inevitable plunge. I should have known better. Shoulda, coulda, woulda. It's both frustrating and fascinating to look over the last six months of entries - I can see things, things leading up to things, things that were coming right around the pass, things that prove that annoying 'hindsight is 20/20' cliche true.

It's like...y'know how trains have to sound their horns when they come across an intersection? I heard the horns, I just don't know if I recognized the blaring for what it was. Like I mistook it for something else. Something else like health or healthy people energy, after having been down so long.

Or else I just decided to stand there, figuring being hit by a train was a quicker way of stopping instead of throwing on my own tiny, inner-car brakes. Feeling as trapped and in despair as I was at the end of the mania, I think it was closer to this one.

So many signs, so many small pointers. It makes me wonder what, six months from NOW, I will re-read and shout "OH MY GOD HOW DID I MISS THAT?!" I know that's journaling in a nutshell - a process that gives us a process of looking back, but it's still astounding to me just how accurate it can be on the other side.

When I was younger, I was sure I'd be dead by 30. So sure of it that I'd made funeral plans. Well, I'm 35 and if I'm dead, then I've got a letter of complaint to write to Afterlife HR, because the afterlife is way too close to the aches and annoyances of the living. So I'm glad not everything is accurate.

But signs on the wall? That much is true. That much is most certainly true.
quirkytizzy: (Default)
Accidentally changed my profile picture on Livejournal only to realize that the previous one was left there from when I had a paid account. And LJ gets no money out of me anymore, so this picture it is. Outside of the hair being about three inches shorter, it's actually pretty accurate.

I can wear my own shoes again. The edema has all but nearly passed. Still got a tiny bit of the chipmunk cheeks, but hey, four fucking months later, I now fit into all articles of my clothing. Some of it is even a little loose now.

For now. Until the next big, nasty flare up. Take the victories when and where you can.

I had this whole thing about trust and fear, spirituality wound into your comments, queued up to write about, but what I wanted to write about just isn't there. Not the words to describe it. Or maybe not the thoughts. The coherent ones.

I don't know what I want to write about, except that I am staying up past 1 AM, if nothing else to escape the torture of waking UP at 1 AM. If I am to be plagued with ridiculously early wake up times, let them be set later. I can't outsmart the insomnia or its consequences, but maybe I can move its schedule to something reasonable. I tried that last night and outside of a half an hour of being awake dealing with some nausea, I actually got five and a half hours of sleep.

That's more than I've had in months.

I repeat myself, thematically and even sometimes word for word, so much in these words. In these entries. In this journal altogether. As a general human being. I guess we all do.

There was nothing to be said tonight. I said things anyways. I guess that's okay, too.
quirkytizzy: (Default)
I think I just figured out one of the biggest stumbling blocks I have towards developing a sense of spirituality.

"I had a great-aunt whom, no matter the situation, told me to 'Trust the Lord'. If something good happened she praised the Lord for it, and if something bad happened she trusted the Lord to fix it. And somehow the person living through these experiences seemed to disappear in the equation."

So many forms of spirituality rely on the divine as some kind of planner, some kind of giant chess player, moving them to where they need to be at whatever time they need to be there. So many forms of spirituality require giving up some form of personal autonomy - "let go and let god", "pray for God's will", that sort of thing.

I have my own will. It might not always be the smartest bet, but it's all I have. And I don't believe that inviting some deity or deity like creature to meddle with it will somehow clear the waters. Whatever happens in my life happens to me. Not to God. Not to a Higher Power. It happens to ME.

That seems significant and noteworthy. It also seems a practical baseline to build a sense of spirituality from. Being sick pushed me towards wanting to believe in something, but being sick has also pushed within me a renewed sense of wanting personal control. I don't find this a bad thing. If anything, it's helped rebuild a sense of ownership over my life, or at least the strong want for one.

And that seems completely incompatible with most spiritual structures. I know, I know, I should just make up my own, but the truth is I don't know HOW to make up my own. I look out and see what I want, what I need, and don't see anyone else that needs the same thing.

All I see are people who are constantly second guessing themselves, waiting on the approval stamp from God to see if they are doing the right thing. I don't want that. I'm no stranger to moral or situational ambiguity, but I know that my will is not born at fault. I know that if I cannot learn to trust myself, then I cannot learn to trust anything else, let alone some definition of a Higher Power, which is nebulous and hard to define as is.

Maybe I'm just not ready to believe in God. Maybe the spike of interest in spirituality in the hospital was just a knee-jerk reaction to the fear of the unknown. Maybe I am still an atheist and will forever and ever be, amen.

But if I am those things, why do I want to believe in something so badly?
quirkytizzy: (Default)
Just tried to take a drive. Do something, y'know. Had to turn around when I realized I was having trouble staying between the lines.

Thanks, meds that-don't-do-what-you're-supposed-to-do (make me fucking sleep) but still continue to fuck with my equilibrium and daily functions for hours and hours after I take them. I don't understand medicine and I don't understand how it works and I don't understand how that happens.

There's a lot I don't understand. Jesse will occasionally take a 100 mgs Seroquel and he's out for 12 hours. I take 200 mgs of Seroquel, 200 Lamictal, benadryl, 1 mg Clompzapine, and occasionally a Xanax, and if I'm lucky I get 3 hours of sleep. If I'm lucky.

Why the fuck can't my body be normal? Or at least normal enough to fall proper victim to a handful of meds that should knock a grown man on his ass, let alone a 5 foot tall, 130 pound woman.

Seriously. One half of one med puts a 6'2, 210 pound man out for half a day. Me? I am tiny, med-adamentium. Nothing gets through, or at least not the way it's supposed to. I take enough pills everyday to literally choke a person to death and my body just scoffs at it.

Try to lay down again.
quirkytizzy: (Default)
I woke up at midnight, so sweaty that it required a full strip down and redress. Desperately trying to think of things to write about, but it all comes down to my hatred of insomnia. I haven't slept a full four hours in four months. I wonder what this does to a body, to a mind, month after month, and I no longer need to question it.

I know exactly what it does, because it's doing it to me.

I've even lost the ability to be awake enough to be productive during this reign of sleeplessness. I stare into the dark or weave like a drunk (yay for non-metabolized meds!) to the porch and chainsmoke endlessly. There's no energy for cleaning or reading or tv watching or anything. Just...being up. Without the mania carrying me through these early hours, there's nothing to do. And boredom plus insomnia is really, really frustrating.

As always, I miss the mania. Do not miss what comes after it, which is inevitable, which tempers the missing into something reasonable. I just miss having that energy. Yesterday Jesse and I stopped at three stores, a total of an hour and a half, and I was WIPED OUT. So bone tired that I wasn't sure I could carry a bag of groceries.

My body never did that before my kidneys failed. I could spend all day running errands. Now in less the time it takes for a movie to run, I find myself collapsing into bed. Lupus stole my energy, whatever little I had left at the end.

There's so much I want to do during a day, but like Christie said, you have to keep in mind how many spoons you have. Often I have ONE in reserve, in which I COULD go out for coffee or COULD go to the park. But I know using that one spoon on anything but hauling groceries up two flights of stairs will render me completely useless, so I'd better save it for practicality.

I'm a practical person by nature. I also love coffee and coffee shops. These two rarely seem to line up anymore. Same with the park. I know by the time I get to the walkaway around the pond, I'll be too tired to take even half the path and have to turn right around back to the car.

Those are normal lupus experiences. Add in almost half a year's worth of nearly pure insomnia? It gets a little crazy - and a lot frustrating.

And so I've spent yet another entry bitching about lupus. It's been the prerequisite "hour" since I woke up, so I'm going to try and lay back down for the next hour of tortured, restless, sweaty sleep.

Here goes.
quirkytizzy: (Default)
The insomnia is driving me mad. I wake up at 1, either naturally or by some physical ailment (which always chooses 1 AM to manifest), and groggily stumble about for 45 minutes until my body settles out. I lay back down, thinking "Just one more hour. If I can get just one more hour, maybe I won't be so groggy." And then I'll get another hour, wake up, have to wait another 45 minutes, get another hour....I sleep somewhat decent during the day, except this week it just makes me groggier, even during the day.

Fucking prednisone. Or maybe I have a cold and don't know it. Or maybe my body is some sort of reincarnation of Loki and it finds this kind of swinging-sleep bullshit hilarious and entertaining.

I read the lupus boards and hear people talk about natural cures, or hear people's frustrations with OTHER people's talk of natural cures, and the latter camp is where I firmly sit. I'm a fan of two sayings.

(1) If it worked, they'd call it medicine.

(2) To quote Barbara Einreich, "Death is as natural as anything else." And without the wonders of Cellcept and the various other drugs I suffer through, I'd be very, very natural.

Haven't run into anyone personally who pushes bullshit like the lemon juice cure, but I'm sure eventually I will. I take supplements and swear by the power of ginger to help with nausea, but to drop all medical advice and live by juice and vitamins alone?

No thanks, I'm not suicidal.

I'm so tired. I keep thinking the body will give out, sleep 15 hours straight, and then be fine, except it sleeps 1-2 hours at a time (3 if I'm REALLY SUPER LUCKY AND EXHAUSTED) and it's up, and that does not give the same rest as a marathon nap. It'd be one thing if it stayed up, but I only get an hour or two's worth of wakefulness before the sandbags wash over again.

I just want some kind of consistency with my body. This seems to be an impossible dream.

It's been overcast the last few days. Lupus sufferers are supposed to hate the sun - it can cause all kinds of flares and symptoms - but I need the sun. I'll chance sitting in it for an hour, easy, just to feel alive. Even seeing the sunlight spill through open windows is life affirming. Sunlamps never seem to do the same thing. I keep reminding myself that it's always a sunny day on the other side of the clouds but that only goes so far.

Complain, complain, complain. Listen to me complain.

Michael, what you wrote about strength was profound. I hope you know that. It gave me great pause.

It is now 6:45 AM. I've written a Livejournal entry. I've been "up" for about an hour. I guess I'll try to go back down again.

Every little bit is supposed to help, right???


quirkytizzy: (Default)

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