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See, when one med is causing problems (to which could be the Wellbutrin, as you said Alpha Strike) or another med, the temptation to go off ALL meds becomes great.

Sadly, it wouldn't take but a few weeks for my body to collapse on itself, as kidney and blood pressure medication do important shit - namely they keep me from dying. The psych meds allow me sleep (usually) and that's a luxury I've become accustomed to (when it happens, at least.)

Good news: I feel with-it enough that I don't think a trip to the psych ward will be necessary.

Bad news: that could change at any moment. It's really hard to plan a day around "Not crazy right now, but damn well could be an hour from now."

I've googled Wellbutrin blackouts and while most of it seems to happen while mixing alcohol, many report exactly as you and I, Alpha. No intoxicant needed - just hours of blank time in which we were performing tasks quite awake. I'd thank my lucky stars I gave up drinking decades ago, but it seems even THAT is no guarantee from medicinal fuckery.

While listening to a Lana Del Rey song (a happy song paired with a terribly depressing video), I turned and asked Jesse if creepy people - like myself - were born or if we were made. I don't really think there's an answer, outside of "genetics loads the gun, environment pulls the trigger." (Take THAT, nurture vs nature argument!)

I do know it makes me less afraid of sad things. A mixed bag, as it means I can also charge headfirst into the morbid and leave a mess of uncomfortable people littered in my wake.

Life-long lesson, that one is.

At least I can say that I am fully aware of typing this entry. I am not in a blackout. I will remember writing this. I guess, lately, that's definitely in the WIN column.

Not broken

Jun. 11th, 2017 08:07 pm
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There is something here and I don't know how to write it. Upon further examination, this may be the part of the Wellbutrin I can't stand. Words do not come as easily. (At all?) It's a trade-off, it's always a trade-off, I know. We will see how this further effects my writing, because I can't NOT write.

Who would I be if I didn't write?

I also can't afford to spend weeks where I was, though - insane, unstable, without a handhold. We will see. Perhaps the dosage can be lowered. Perhaps it can't be. I traded some of my creativity when I decided to be on lifetime medication for my bi-polar nearly a decade ago.

I'm afraid of trading off more. I'm also afraid of what happens if I DON'T make that trade-off.

We will see.

I do know something, though. Something that stokes like the fires of old. I will never call myself broken. Cracked, yes. Broken?


I am not the damsel in distress. I will not hole myself away in an ivory tower waiting for my white knight to take me far away from what hurts. I will not pretend to be alone. Your voices are too many for me to say I don't hear - there is no tower I could lock myself in that would or will take that away.

I am not in need of fixing. Who I am is just fine. It's what I DO that needs work. I, as a person, as a fundamental being who exists in this world, am not wrong. So long as I remain open to the suggestions of health and healing from those around me, who I am will continue to expand.

I will get bigger. I will not shrink away from the world like an overly delicate, wilting violet. I will reach further, higher, ever twisting towards the sun. And I will figure out how to continue reaching further. I am not broken. This world, all of the sharp and heavy things in it that can shatter people....

It will not break me.

It never has before. It will not do so now.
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Broken bottles in the hotel lobby
Seems to me like I'm just scared of never feelin' it again
I know its crazy to believe in silly things
It's not that easy...

Maybe it's not all hopeless. Maybe those few hours this morning can bring me to...

High hopes
It takes me back to when we started
High hopes
When you let it go, go out and start again...

Because what I forget so easily, drowning in the day to day struggle, is that I have...WE, as in all of me, to the first breath I drew to the last one I will breathe...

Are like Sparks
We are, we are, we are alive...

Maybe I just have to...

Love me harder...

Maybe I have to accept that this year is a new beginning, from the day I landed in the hospital, as a place to start again, to find myself again. It is in a deeper, richer, darker, and brighter place than I could have ever found without this illness wrapped around my DNA. Maybe accepting that doesn't mean losing WHO I was, even it means losing some of what I used to be able to do.

There is madness in this. There is beauty in this. Every struggle before this has left me with something beautiful nestled inside of it, even if it is stitched and scarred. But beautiful.

I must try to not lose sight of this, and when I do, I must begin the active search to find it all over again.

And I'll use you as a focal point
So I don't lose sight of what I want...

Because this is about love. Love for all the pain, love for all the joy, love for simply having been born, no matter how heartbreaking it can be.

Two words make up the word "heartbroken", and I must remember that "heart" comes before "broken." If I can remember this, then I can know I've...

Found love where it wasn't supposed to be
Right in front of me.

* Kodaline "High Hopes"
*Neon Hitch "Sparks"
*Amber Run "I Found"
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There is sleep and there is peace. The two do not always coincide. I have slept today. I have kept the darkness at bay. The worst of the thoughts only went as far as "I don't want what I used to have. I just want to kill the pain."

As far as the darkest of my thoughts go, it is not enough to send me into a suicidal spiral.

I watch Jessica Jones again. I do not know what I am looking for in it, only that I am searching. I am always searching lately. The questions overshadow all of the answers and the answers always waver. But the search continues. Perhaps there is peace to be had in that, though it's not something I can easily convince myself of.

I will not sleep well tonight. I never sleep well. But maybe there will be peace in what sleep I do get. Sometimes, just sometimes, in the moments before sleep overtakes me, I find myself unaware of what hurts, what I fear, and what the next day will bring.

If that is peace, even if it is not sleep, then that is what I will take. I will never be a peaceful person. It is not in my nature, nor is it in written in my code. There has rarely been peace in my life before and it will never be a continued state of my life in the future. But maybe, just maybe, I can experience a few moments of it.

As always, if that is what I have, then it has to be enough.
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I keep waiting for the sun to come out. The sunlight in me to come out. Recovering from the abuse of my childhood came with clearly defined markers, year by year. Month by month, even. I could feel hope about this as I clearly was making progress. This?

Will this be like recovery from my drugs? Where it takes years of frantic obsession, checking and rechecking, white-knuckling, experiencing only brief moments of serenity, to finally get better?

Because I remember it was like that. It took two years before the terror and agonizingly long work finally paid off. Two years. It felt endless. And in the end, it was like I just woke up one day and it was gone. The obsession to use, the need to apply ungodly amounts of platitudes just to get through the day, the hopelessness, it had just...out of nowhere, it just lifted.

One day I woke up and was free from the needle and free to my live my life. Simple as that.

Since this does not seem to be like the first, I can only assume it's going to be like the second. Where one day, I'll just wake up and be...happy with being me.

And if I'm honest, getting to that day just seems like it's getting harder and harder somedays. I'll make it. There's nothing else to do BUT make it.

But if this is a needle, goddamn, it's going to be another long, long year to get there.
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(And Karl, your recent post is one that I want to get back to, directly as a response to your post. Despite having been there, I don't think I have any answers. They are both so simple and yet so complicated at the same time. Do not feel as if you are alone or as if the issues you raised were said into a vacuum. I noticed and as soon as I am able, I will respond.)

My own morning inner monologue:

* How are you making it, Teressa? How are you still alive and waking up each day, even if it means sleeping all day, or crying and trying to crawl away from the darkest thoughts, or watching tv in the deepest malaise you've ever known?

* Honest answer? The brutal, honest answer?

* Yes. I want the honest answer, brutal as it may be.

* Truthfully, I don't know. I honest-to-god don't have any clue as to how I'm "making it." I guess I figure that feeling hopeless about the future implies a future to BE hopeless about.

* Is that enough?

* It has to be.

* Okay. Okay. If that's what it is, then that's okay.
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While I no longer believe my life has meaning nor purpose, nor that breathing itself counts as a victory...I am at least still breathing.

"I'm like an ambulance that's turning on the sirens
I'm like a soldier coming home for the first time
I dodged a bullet and I walked across a landmine

Oh, I'm still alive

Am I bleeding am I bleeding from the storm?
Just shine a light into the wreckage, so far away, away

I'm like a junkie tying off for the last time
I'm like a loser that's betting on his last dime

As I walked out on the ledge
Are you scared to death to live?

And the truth that's in the message
'Cause I'm still breathing
'Cause I'm still breathing on my own
" - Greenday "Still Breathing"
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I am shocked to find that the potassium blocker prescribed does, actually, help keep my blood pressure even. It's a POTASSIUM blocker. Like milk and dairy shit. No idea it could help your heart work better. So go the mysteries of science.

Jesse and I had an illuminating conversation on recovery from chronic illnesses. He asked how far I could go on the treadmill when I first started exercising. "Uhhh, about a quarter mile," I said. "And even that wiped me out." He then asked how far I was going right before lupus jumped up and went Hey, Lupus! "Two and a half miles, five days a week."

Then he asked me how long it took to get there. I remember it taking almost a month. Then, as a final question, he asked if there were any times that I was too sore, too tired, or too ill to work out.

"Plenty of times. It always set back my endurance, too. But I also always managed to work back up to those two and a half miles", I said, beginning to understand the connection. While this is a hell of a lot more severe than the ability to climb on a treadmill, it helped me realize that (1) it's okay to have setbacks that actually set you back and (2) that I can work back up after that.

Not that I'll ever likely be able to run another two and a half miles, five days a week (metaphorically, at least), but it was a good analogy to ease some of the rage I have about this whole thing.

I like metaphors and analogies.

A new resentment that I am only now beginning to recognize: The insistence that sick people focus on "the small joys of life." I've never had a problem finding or treasuring those moments before. My journals over the last 20 years are littered with records of small moments of delight. The relaxation of a cup of coffee and a good friend. An astounding sunrise. Watching a squirrel dash about on an emerald green lawn.

It's just that before I used to also have BIG moments. A full life, an active life. I do not consider what I have at this time much of a life at all. To be told that I now have to focus on "the small things" feels like I'm being told, yet AGAIN, "to make do with less."

I don't want less. Hell, I don't even want MORE. I just want what I used to have.

It makes me wonder if constantly touting the small moments is simply something that sick people say to make themselves feel better. As if being ill gives us some kind of superpower to enjoy life on kibble instead of the full meals that normal people eat. As if our illness gives us a special sense of inspiration and focus that normal people don't have.

And that, my friends, is just total fucking bullshit.

Idk. Maybe there's merit to the idea. On my good days, I DO notice the sunrise. I DO see the squirrels. I DO have coffee with friends. It's just with so many bad days that stretch into weeks, it gets hard to remember them.

But maybe today is the day Jesse and I can go to the park and just sit on a bench for half an hour. Granted, I'll have to put on, like, a MILLION coats of sunscreen to avoid a flare, but just maybe.

That's where it feels like my life is right now. "Just maybe."

Well, wearisome as it might be, here's to "just maybe."
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My brain decided to wrap three of its favorite nightmare themes into one dream last night. My mother, my stepdad, AND dead cats. And as I sat outside for my first morning cigarette, trying to shake away the tears and nausea, I realized something.

That was harder.

It took two years to get away from them and another 20 years to get over them. I was so young. I was only 15 at the start of it. I had no idea what I was doing, only knew the desperation of having to get away from them.

And I eventually did just that. Did it at an incredibly young age, fighting them, calling a million agencies trying to raise the red flags, joining the courts against the only parents I had truly known at that age. I did all that.

I cannot run away from lupus. There are no red flags to be waived, no armies of social workers I can raise and stand with. Lupus is buried deep within my DNA. There is no hope of separating my body from this disease.

But getting away from them...that was harder. Healing from them....that was harder. It, however, gave me a roadmap. Faded, dusty from lack of use as it is, I know the path to freedom.

And I've decided to use it. Though it may take another two years of desperate struggle to remove myself from this immediate crisis, and another twenty years to accept this crisis, I will do it.

I will be angry. I will be overcome with sorrow. I will lose entire days, weeks, months to the fight, just as I did 22 years ago. But goddamnit, it was a fight well worth it.

So this will be as well.
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Some nights my meds hit me like a brick inside 10 minutes. Other nights it takes hours. I never know what makes the difference.Bitching about writing )

I wanted to talk about angels. I don't believe in angels, but if there were, I might have met one in a recent ER trip. Fragile, slowly breaking down, but with the most innocent, selfless personality I've ever run into. She was venting about her partner, who refuses to do things like take her to ER and doctor appointments. And she gives everything to him. She talked that she would rather see him happy than herself. And I believe her.

And here I am, struggling to find ways to make anyone else feel better. To give back even the tiniest of attention and care they have endlessly, patiently giving me.

She seemed to be my perfect foil, the absolute opposite of me. I'm an asshole. An outright jerk. And here was someone that made the difference clear.

I need to learn how to be more selfless while she needs to learn how to be more selfish. Such diametrically opposed lessons that need learned, sitting right in front of me.

We exchanged numbers, though I have no idea when I'll feel well enough to contact her.

I also realized something about prayer. Prayer is something you do FOR OTHERS. There was a woman in the hospital, in pain and not at all understanding what was happening to her. She was hysterical, terrified, and so small in her illness. I gave a small, silent prayer that she gets the care she needs.

I don't need prayer myself, as I have no idea if (or believe) divine help is available. But maybe there's something out there listening and maybe other people need it more.

One more smoke and then to bed. I haven't written near enough as I want to, but my body has now closed down for the night, locks and steel grates down tight.

2 AM. There's no use in trying to fight this any longer.
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OMG, THANK YOU FAIRY! THANK YOU THANK YOU THANK YOU! Jesse and I will now go see them, and I'll get a chance to thank the band for being such a huge part of my recovery. I've been dying for ages to let them know that (and they are often busy and aren't able to respond to fan mail.) It'll also be FUN!

And yep, Radium, I literally JUST NOW got it. Like, 20 years after the very first game release. I can be a really slow learner. It actually took me that long to put two and two together.

And she really DOES come off as sociopathic, what with the wanton slaughter and all, right Gonzo? I never realized just how violent the game was, and just how murder-hungry Laura Croft is until Jesse started playing through the last released game.

I mean, Jesus. What a thing to recognize!

Again, thank you so much, Fairy. Seeing as my income consists solely of borrowed money, I do not ask for fun money to spend. It all always goes to basics. If I do something just for fun (which is usually going out to eat), I wait until Pat or another friend takes me out and can pay for it on-the-spot. This ensures that, as they are spending the money RIGHT THERE, that they can afford it and I am not draining them.

It'll be wonderful to be able to do something extracurricular. This is a chance to do something other than simply survive. Thank you SO MUCH FOR THAT!

Wait, I can spell the word "extracurricular", but I can't spell nausea without spellcheck? Geeeeez. I blame the English, what with all their silent letters and whatnot. (America is not as removed from the Motherland as one might think.) Though maybe I really ought to blame the ROMANS, as they turned what would eventually be the English language into a mess of silent letters.

Damn silent letters.

English is rough. Also, boobs. )

I also often find myself...flummoxed about HOW to put on clothes. As if I've forgotten how a shirt works. It can take SEVERAL ENTIRE MINUTES just to get a shirt on properly. Cognitive dysfunction rules my head, I guess, but it's annoying and worrisome.

I've also put my necklace back on, as the clip on the necklace had broken. The one that has a key, representative of my sister, and my Santa Muerte locket. It is comforting, both the weight and symbolism of it.

While I am not spiritual, I can be damned superstitious. That locket has been with me for all but the very first hospitalization. The ones that could have gone really, REALLY wrong. The ones where I almost died. But She was there, either around my neck or nearby in my purse. (Often they need to remove the necklace for chest x-rays or whatever.) But the point is that every time something went catastrophically wrong, She was near and somehow, every time, I escaped Death.

Not saying that I believe in her as an honest to god deity. But I DO believe in the power of symbolism - and what she represents is a very, very strong symbol.
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Which is terribly silly, as I can't imagine why McDonald's would make anyone cry. (Sans anti-fast food zealots, of which I am far from. I fucking LOVE fast food.)

This happens ONLY at McDonald's, not in any other fast food joint I might be stopping in at. And this ONLY happens when I'm eating alone at McDonalds. But sure as shit, if I'm there by myself, listening to whatever concoction of soft pop and country they've got playing over the speakers, I find myself fighting tears.

Every. Damn. Time. For some reason, eating alone at McDonalds prompts feelings of loneliness, depression, resignation, and even despair.

But ONLY at McDonalds. Only there. Not at Burger King or Jack in the Box or anywhere else where the food is fast, cheap, and as equally bad for you. I can eat alone anywhere else and feel just fine, or even feel joy at being able to indulge in fast food.

Just not at McDonalds.

I dun get it.
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I've decided to come up with two goals a day. One will be of the necessary type: Appointments, self-care, etc. The other is what I will call my Bucket List goal. They will be comprised of things such as cleaning or fun things to do.

I, in general, LOATHE setting goals of any kind. If there is one, singular lesson life has taught me, it is that it changes. A lot. Over and over and over. And for me, usually in traumatic ways that upheave any thoughts I had about how the next 5 or 10 years might go.

My life changes so fast and on such a tight spin that if I were to have goals, they'd have to shift lifetimes in moments.

I'm just not that fast. I can't adjust that quickly. It's like that old joke - Wanna make God laugh? Make plans. God's laughed at me enough. I don't make plans anymore.

Goal setting of the tiniest kind )

Forgive me, world and beyond, but I'm just not caught up on catching up yet.

I read the funniest article on the thoughts that go through a chronically ill person's mind. I thought it would be funny to write out a few daily thoughts that I have, every day, good day or bad.

* Where are my granny panties? (Known for being super comfortable while also being the most unsexy thing a person can don on their derriere.) Goddamnit, why do I own anything BUT granny panties? I need to buy more granny panties!

* Is this the day something is going to go terribly wrong?

* Hurry up, 3-D printing. I need new joints and new kidneys STAT.

* Why me? No, shut the fuck up, Teressa. Why NOT me? There. That's the better thought.

* Can I reeeallly pull off this outfit with my size 11 leopard print boots? (Which are the only shoes that fit when I'm edema's bitch.)

* At least I know of three places I can go into in any manner of dishevelment and not get strange looks. Doctor offices. Psych offices. Walmart.

* Who am I going to annoy for money for gas, cigarettes, and shampoo from this week? (This is a constant, daily, reoccurring thought.) And as the months stretch on, it becomes a SEVERE source of fear and anxiety. I know my loved ones have only so much to give - and only so much I should ask from them. (If I were a good person, at least.)

I have enough sense to ask anyways, as things need to be bought and bills need to be paid. It has, though, shredded what pride I have in asking for help, in ways that I've never been ashamed of before.

And as of the last couple of weeks....

* You are not hopeless. Give yourself credit for the trauma your body has been through, and then it will be easier to give yourself credit for the trauma your mind has gone through. BE. PATIENT.

That last one doesn't always work, but the thought is there, even when I don't believe it.

That's a good thing. That's a very good thing.


Mar. 27th, 2017 04:29 pm
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It is most certainly dangerous, Matrixxman. The way they can fob you off. This is why I'd avoided ER's for 20 years. I had no doctor. No health care. No General Practitioner to see after walking out of an emergency room. What good would have it done, I always told myself.

I also had the strangest dream about you, Matrix. One in which I'd somehow stumbled into your garage. You owned a blue Volvo - a Beetle, I think. All of the doors were open, but you weren't in there. I started for the car, but noticed a book on a garage shelf.

It was a journal of yours. Brown skinned journal, but with the most curious thing in the middle. Small, glued, mini-pages stapled in the middle. A book within a book. I was opening up the small pages when a man in a blue shirt with a red and white hat chased me out, shouting that I would not touch any of "Chuck's" stuff. (Your name is NOT Charlie, is it?)

I am definably mentally clearer. I prioritized this morning. We'd found a combo that mostly knocked out the migraine and woke up this morning, two walk-in's this week needed on my mind. Medical and psychiatric. I can only do one a day, lest I collapse.

It's in my instinct to go the mental health care intake first. It's what I have most practice in. I know how those work. They don't scare me. But my blood pressure is reaching internal cooking temperatures. I don't know what medical walk-ins are like. They scare me.

But I did what was immediately needed. I prioritized. I went to the Dr's walk in. Turns out it's much the same as any other kind of walk in. Some extra paperwork, a bunch of waiting, and clipped services. I came out with some new BP meds and a prescription for Hydrocodone to handle the pain in the meantime. Two hydros, a bath, and a lot of rest later, I feel somewhat functional.

And you are correct, Cinema. The migraines are connected to my blood pressure. At least it directly seems so. The main medical goal is now to get my BP under pressure and the migraines should also ease. The Dr said it's possible it's a joint inflammation issue, restricting nerves and blood flow, but I've an appointment again in two weeks. We'll know for sure then, but my bet is the blood pressure.

I re-remembered something yesterday. The pain had made me...irate, as Jesse put it. I wasn't just snappy, snarky, or bitchy. For whatever time I spent awake, I was enraged. And I remembered why I held onto the anger of my life for so long.

Anger is injured pride. It's basically (valid or not) your EGO talking. And if there's one thing I won't do when I am feeling egotistical is hurt myself. I'll be damned if I let myself make whatever pain I'm going through worse.

If there is one ill condition I am safest to myself in, it is when I am furious.

But the fire of that rage that kept me fighting for so many years is gone and now apparently only comes out when I'm in physical pain. This is not a good way to sustain that motivation, which itself isn't entirely too healthy, either.

Something I hadn't quite considered when the zen of my abused childhood and David - and even my drug addiction - became greater than the venom: Those were underpinnings. Pillars. Without them, the ceiling crashes down.

I need to replace those. I'd never thought that losing anger could actually be a LOSS, something that would need something else in its place. But it does.

How to rebuild, or what to put as pillars, I have no idea. But I'm searching. Starting therapy again will help with that. The rest?

I don't know. It'll show itself eventually. Nothing yet has killed me - even me. Somewhere inside of me is someone who does not want to give up. Somewhere inside of me is someone who knows how to scavenge hope in the darkest of places. Somewhere inside of me is someone who knows how to build a bridge in barren lands with her bare, bleeding hands.

Somewhere inside of me is someone who wants to live, no matter what threads I have scramble at to do so with. I know this because I've done it before. I know this because I. AM. STILL. HERE.

I feel like now is where the work in bringing her to the surface begins.
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Appropriate. Real. And still questions I am asking.

Does anyone have the answers?

"Toward", as written by my friend here on LJ, [livejournal.com profile] ravenlake

To those that I love

I will tell you that I am afraid, and despite my attempts at courage and naturalness, I find myself posing half of the time. I am ambitious and proud, my ego is frail, and I long to be settled and grateful and earthy. I am all of this on one side of me, and can I say, as I try to make myself worth what you weigh in for me, I can't tell if I'm doing it the right way or all wrong, can't tell my blindspots from my left, my mistakes from my right.

Will you forgive me for not being around? Because I do want to be. Can I say that I am mending breaches and tears all at once, and while I ask not to be excused, know that I am not ungrateful, just maybe a little foolish, and a little blind.

And this is addressed to you, and others--that the memory of you beside the window, or laughing hard with everyone else, or squeezing my hand, or having a graceful sense of responsibility--but most of all, the proximity of all our faces-- has made it harder, yet all the more valuable, to step outside a worn world of shadows, into the dazzling sun.

This year has brought with it new meaning to the words "learning how to open up." I'd always thought I was the most open person I know - after all, wasn't I utterly free with the information of almost every trauma of my past? Wasn't I outgoing? Wasn't I straight-forward and didn't I say just about everything that crossed my mind?

And I was/am all of those, though with the appropriete disclosure lesson of the last few years, perhaps slightly less of the first. And yet, this summer, almost everyone around me was begging me to talk to them, to let them know what was really going on, because I wasn't.

It came to mind that while I'm terribly comfortable talking about the places I've been, I'm less comfortable talking about whatever is going on inside of me at the present. Half the time it's because I can't discern the exact shape of the landscape myself and because of that trying to communicate it comes out as a big tangled ball of crazy, frustrating both the person I'm trying to talk to and myself.

But I'm learning. At best, I can usually come up with long strings of words that I'm feeling and dimestore psychology for those feelings), it is something I'm learning to appreciate.

It is a new idea, that's for sure. It is, in part, the difficulty of this that propels me along to continue trying to do it. And it's risky, because when I talk from that space in me, I really do risk offending and hurting people from being unable to clearly say what I mean. Extremely risky, and thus even harder.

But maybe it's riskiness, it's difficulty, it's potential for disaster and loss, is what keeps me trying to do it right.

As Ravenlake said, it makes it harder, and thus, all the more valuable.....

What is your experience in these sorts of things? How do you untangle the moment and share clearly? How do you keep wanting to share? How does that process work for you???
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Outside of caffeine and nicotine, at least. I've cut waaay back on caffeine, often not even making it through half of my first cup of coffee for the day. Soda has been nearly completely eradicated from my diet - and when I do have it, it's caffeine free soda. Nicotine? Still at 2 packs a day. But past that?

It's food. When I find something I can eat, I overindulge like a motherfucker. Thankfully, it's healthy foods, as I haaate what going over on my renal diet does to me. But I've found that I crave the "the food coma" that over-eating produces. It's comforting and relaxing - things that are often in short order lately.

I also realized, with firmness and some form of finality, how sick and tired I am of bitching about lupus. I mean, it's been eight fucking months. The amount of anger and sorrow spilled over those last eight months has gotten my head all kinds of confused and mixed up. So I'm going to do my best to find other things to write about.

There will be plenty of rageful, despairing posts ahead. But damnit, I'm more than this disease. It's time I begin to accept that and let it show.

Which probably means endless posts about my cats. But hey, that's better than drowning in self-pity and anger.

Speaking of cats, Rupert has finally stopped sleeping in trash cans. He now sleeps anywhere in the main walkway. I wonder how long it will take him to realize that his constantly getting stepped on is due to where he has taken residence.

I don't know if cats are smart like that, though.
quirkytizzy: (Default)
I wake up too early, headache, heart racing, climbing the walls of anxiety. I took my Xanax and while I'm waiting for it to kick in, I'm going to do what I've always done. I'm going to write. I hope it helps.

It was a strange day yesterday. Jesse and I had a marvelous time together, shopping and then going to a museum of art. We rarely take trips like that and it was immensely enjoyable and connecting. I came home exhausted, of course, but feeling for the first time in foreeever, that the exhaustion was worth it.

We came home and cuddled on the bed for hours, watching Babylon 5. As the hours rolled by, though, both of us were fell with anxiety. The kind that grips your ribcage and doesn't let you breathe, doesn't let you close your eyes, the kind that makes you feel like whipping about the room to try and keep pace with your sprinting heart beat.

Jesse says his was caused by pain. Mine was caused by something ridiculously over-dramatic and pointless.

I was afraid of sleeping.

The last time I felt so exhausted, I fell asleep and almost died. Most nights this is not a problem, so I'm not sure why it came on then. I took my blood pressure hourly, trying to let the numbers - in full health, if not even a few points higher than normal - reassure me. We had been in the sun for hours, which is proven to lead to exhaustion and flares for lupus folks. We had done far more walking than we normally do, which is also proven to lead to utter exhaustion.

It was all explainable and yet, I kept insisting on just one more episode. I love B5. But last night, I used it a reason to not fall asleep.

I fought the exhaustion until 11:30 PM, a time so foreign to me to be awake at. I staggered my meds as to keep an eye out on what each one did to me. Jesse and I talked our way through it alongside the medication. This was extremely helpful.

My meds did relax me and I was able to sleep, but here I am, up far too early for having gone to bed so late, feeling the same fear percolating.

REALITY CHECK: I woke up. I did not die. Fear against facts, my anxiety is unfounded. It is speaking in the tongue of lies. I know what's real - and what's real is that I'm awake and writing. This solidly disproves the theory that I have expired sometime in the night. (Or if I have, the afterlife is bizarrely mundane and still requires scooping out the litterboxes.)

And yet, the fear remains. I think I know why.

I'm day 29 out of the hospital. This should be uplifting. It is instead TERRIFYING, because I keep waiting for the other shoe to drop.

For every day I remain away from the life-saving capacities of a hospital bed, that is another day something could go catastrophically wrong. Will it kill me? How close will I get? Will we catch it in time?

I've never been afraid, REALLY afraid, of Death before. I am now. I am and as is my stupid freaking way, only afraid of it a month after it happened. Delayed reactions are SUCH a bitch.

There will always be another complication. There will always be another doctor's appointment. There will always be labs that return with stilted numbers that require some kind of adjustment. That's just part of the package. I'm well on my way to accepting that part of my disease.

But. Will. It. Kill. Me.

I don't know. I can't say for sure because no one can tell the future. All I can do - all ANYONE can do - is live their lives and just hope that nothing comes along and puts them in the ground that day. That's the best we all get. I know this.

Day 29 out of the hospital. Will I make it to 30? All signs, with my new health now that we've gotten my meds under control, point to Yes. But the Magic 8 Ball that is life gets shaken up a lot. At what point will it say "Not likely"?

I've never been afraid of Death before. I am now.

Day 29 out of the hospital. This is a good number and it means good things. Now I've just got to convince myself of that.
quirkytizzy: (Default)
The day winds down in a considerably better place than it started. A goddamn delicious salad, conversation time with Jesse, and a productive shower all add to the calm of a day spent entirely at home.

I was telling Jesse that I had this terrible urge yesterday to rid my home of everything that reminded me of death. All of my skull and skeleton figurines, the graveyard bric-a-brak, the muted fall colors of fake flowers that adorn the walls around my bed. I wanted to throw it all away and redecorate my home in enough pink and red as to make Barbie's Dreamhouse jealous.

Being as I'm an aging goth, though, ridding my home of everything creepy would require an entirely new apartment. It's just not practical. I've also been staying away from creepy videos, stories, movies, AND conversations.

And I know this as-of-late nervousness about creepy and morbid things will fade. It'll go away and I'll be happily traipsing about graveyards and buying new skeleton adorned snowglobes. And I don't reeeallly like hot pink anyways.

It's just that right now, the subject is awfully close to home. It's surprising to me. Shocking, even. I've been morbid my whole life. This? This is new. This leaves me reeling. A part of my identity has slipped and I'm not sure what to put in its place.

THAT, actually, is sort of a big thing altogether right now. A loss of identity. The regular, mid-life angst is there, but with an assload of sharp and sudden mortality-mongering thrown in there, too.

Eight months ago, I thought I knew myself. Eight months later, I'm not sure at all. I'm thirty-fucking-five. I really ought to have a better grip of what makes me ME.

I don't. All I've been doing is staring at my parts, all scattered and loose, hearing other people say that I'm more than the sum of those parts, and not at all understanding what that means.

Still, it is a good day. I'm not going to redecorate my apartment. I'm instead going to eat a delicious chicken dinner and sleep tonight, knowing that I don't need to KNOW myself to sleep.

At least tonight. That's damn good enough.
quirkytizzy: (Default)
You may be right, Matrix. It may be that steroids are the only treatment for certain parts of certain disorders. It's certainly one of the most common pills prescribed for lupus. But I just don't want to think that I'm that screwed. That I'd be painted into such a corner just because I got sick. I do know it wasn't terribly long ago that the only treatments for lupus were chemo and radiation, and that it was considered a fatal disease.

Looking at it that way, steroids don't seem SO bad...except they are horrible. Still, I guess incurable is a much better word than fatal.

Idk. Science needs to hurry the fuck up and figure this shit out, because I'm sure as hell not smart enough to cure lupus.

This blow-by-blow bullshit diary of my disease makes me crazy sometimes. It is an outright obsession. I suppose that makes sense, given how sick I still am, but geeeez. It feels like I'm listening to the same album over and over again. I'm beginning to be able to apply different connotations to the lyrics, but it's still the same band singing the same songs.

Does that make sense? I'm not sure if it did.

I feel as if I have no sense of give and take lately. It's all been take. Money, food, driving, emotional reciprocation - I've been taking those from people and giving them little to nothing in return. I know, realistically, physically, there isn't much I CAN give. No one is faulting me for it, but ***I*** feel it, and I feel it as being very wrong.

In an early episode of iZombie, the main character comes to the realization that she'd been spending so much time thinking about what she lost, rather than realizing what she had to give. Rewatching it as a person who requires some pretty heavy caretaking somedays, it really hit close to home.

Granted in the show, she uses her zombification to solve murders - and I am neither a zombie or able to solve murders. But what is it that I have to give?

Everyone around me points to my writing and goes "DUH. That's what you can give." But give what? A memoir that I have no idea how to start, structure, or even what it'd be about? Grant-writing, to which I think I'd like to do, but often fall short on energy to DO that kind of writing? Print out the last 13 years on Livejournal and just start shoving it at strangers on the streets?

Technicalities aside, I'm not sure if writing is what I'd want to give. Like, maybe it wouldn't be enough. It's certainly not going to make up for the thousands of dollars I've been borrowing, or for long nights Jesse has spent on hospital couches with me. It won't make up for the unrelenting avalanche of lupus bitching I've been throwing at all of you.

Is giving about making things up to people? About balancing the scales? It seems as if it should be. And if so, how do I balance those scales? What do I do, how do I serve others in a manner that will tip things closer to the middle?

What is my purpose here, in the middle of all this taking I've been doing lately? Where do I fit in?

I know, I know. Philosophy's been trying to answer those questions for thousands of years now. Me and my tiny little journal and what I'm writing in my tiny little journal are not going to be what solves them. But they're questions that, along with my red blood cells being eaten by lupus, are beginning to consume me.
quirkytizzy: (Default)
If this week is any indication of how life with lupus can be, then I no longer have to be afraid of what the future will bring. I can look into the mirror and see a life of possibility. I can raise my head towards the sun and see my shadow below, instead of it rising and enveloping me whole.

I am changed and continue to change under this disease. I am far more somber than I was before, but as time goes on, I'm finding that this might not be a bad thing. Cavalier as I have been my whole life about what lies around the corner, suddenly the years ahead hold weight. I've given the future more than a cursory glance and for it, I find reason to believe that it is to be treated with respect. With honor.

I've always said that I don't make plans because they inevitably fall apart, crisis by crisis. Lupus has only strengthened that belief, but I am more able to do things that assure a brighter future, regardless of what plans I do or do not have.

I've been able to do something this week that I have not been able to do in months. I've been able to laugh. True laughter. A delight that catches me by surprise, places where humor can pierce the veil of weariness. Jesse said that the first time he heard a true laugh from me, he later cried, so beautiful was the sound.

Along with it, he used a word that I had never thought to put towards myself. I say the word "somber." He says the word "graceful." I re-read my entries over the last six months and see no grace, only confused battle cries. Graceful, he said, in a sense of how I am beginning to stand to this disease. Graceful in that I am somehow able to do the things that need to be done, no matter the rock thrown onto my back. Graceful in acceptance, a thing that has been happening in such small increments as to be nearly unnoticeable.

But maybe it's more noticeable than I thought. It was one of the most beautiful compliments I've ever received.

So much of the previous bitterness of my life has been blown away. Snuffed out like a breath upon a candle. I will never be okay with how I grew up. I will never not be upset at David and the ways I was treated. But the venom has fallen off the edge of my psyche - and it did so quickly. All my life I've held onto anger. The sharpest of the anger, the kind that cuts both those I'm angry at and myself as well.

These days I simply do not have the energy to indulge in it often. I will sometimes seek it out. It is a fire of motivation that I know well, that I know works, that I know will always be in some core of myself.

But the older angers have begun to fall away, leaving room for me to work through the new issues, the new angers, with a clarity and space that has never been there before. The new issues are still overwhelming and I still find myself flailing barely above the water. But what came before does not hang on my ankle like a cinder block, dragging me even deeper into the waters.

This has only happened in my sickness. I think it could ONLY happen in my sickness. There is so much truth to the idea that life changing events force new perspectives upon us. A thing I'd dismissed as being cliche - at least until it happened to me.

Now that my body has begun to align itself with some semblance of health, of not being nailed down to the floor, the mind also lifts. I am, as always, astounded at the mind/body connection and how entangled it is.

I lay in bed with Jesse last night, looking at the scars on my arm. The places where I lost hope, where the internal agony had become so great that the only way to describe it was to write it in blood. I am eager for the scars to fade but it is just as well that they take their time in healing. Let it remind me of the places I've gone. Let them tell a part of the story that rises today as the sun climbs over the plains.

Messy as it was, dangerous as it was, (apparently, being anemic, I lose more blood through those shallow cuts than normal people), they remind me of the places where I need to be the most compassionate towards myself.

I tried to re-read every entry over the last six months. I made it halfway through and had to close the laptop lid. It's all so raw, so terrified, so full of rage and frustration. I don't believe in hiding what hurts and thus the hurt utterly soaks the pages.

I will never be a peaceful person. My road is one that will always be rocky. I will not always have shoes to traverse this road and sometimes, my feet will bleed on the gravel. There will always be an unstable part of my core, one that can explode or implode, given the right amount of time and triggers. I have long since accepted this part of myself.

Peace is an unattainable goal for me. Acceptance is not.

And this morning, at 5:49 AM, before I smoke the cigarette that marks me going back to bed, I accept. What it is that I am accepting, I'm not quite sure. But I do know that I am accepting something - and that alone gives me hope for the future. For the first time in months, I finally feel as if the future is worth fighting for.

The future is always worth fighting for.


quirkytizzy: (Default)

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