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Well, Ben, at 3 AM I was feeling pretty decent. It's 10:44 AM. I am not feeling so decent. I am running off over a month's worth of 3 hours of sleep a night. They keep giving me more sedatives, which I can't take all of or else I'll never wake up.

That sounds suicidal. I don't mean it that way. I just mean that I'll sleep for six days and be utterly incapacitated. Maybe that's what I need to do.

I cleaned. Not even a REAL clean - did all that yesterday. I scooped out catboxes, emptied the vacuum cleaner. Took out the trash and had to take the stair circuits to check the mail.

It demolished me this morning. First morning it's done that.

I have gone out every single day since my hospital release. To the store to pick up a med. To the park to sit. To a meeting. To just fucking drive down the street. Home is death. I've spent the last year withering, just utterly withering in this apartment. Gotta get out. Can't sit still. Can't stay still.

Lack of motion means dying. I don't want to die.

Resting is not dying. I ain't got no appointments today. Made the fucking follow up calls already like a grown up. Nothing else on my to-do list is life threatening. Jesse keeps saying I need to rest. Don't go out. But I want to.

It's too cold to sleep at night. If I don't put on: two pairs of fuzzy pants, two pairs of socks, a shirt, a long sleeve-shirt, AND then the inevitable oversized sweater the first time I try to go pee, I shiver all night. This makes me sweat, which makes me even colder.

So I figure fuck it, wake up at 3 AM, throw on a robe AND a fuzzy beanie, and just wait till Jesse wakes up and I can crawl under 4 blankets in one layer of clothes when the AC is turned completely off. I can get in about 2 hours of sleep that way.

That's assuming I don't have shit to do during the day, like errands, doctors, and not dying.

My temperature during the day fluctuates between 96.64 (as of one of yesterday's doctor's appointments) and 97 degrees. This temperature shit's really starting to get in the way of sanity.

Most annoying part of all this? So I'm exhausted, grumpy, and later I'm gonna go down for like two hours and wake up with a FREAKISH amount of energy and want to GO DO ALL THE THINGS NOW WHILE I CAN. This is not sustainable. I just can't fucking take all these goddamn sedatives they are prescribing me, because jesus I can't stand how groggy for how many days I feel on all it.

Maybe this weekend. Try what the doctors say. I'm sick, it's okay to sleep for like 16 hours a day once in a while, right? Even though that's all I've fucking done for the last year and everyone was telling me how BAD that was.

How the fuck am I supposed to be doing the exact thing that everyone was telling me NOT TO? What the fuck are people going to think if I do what they said was making me worse?!

Most fucked up thing about this time period? Revelatory . So much amazing mental and emotional growth going on. I feel stretched and open and terrified in ways that I haven't felt in....ever.

And I can't sleep, and I can't get warm, and I'm so fucking confused about when I should be resting and when I should be moving.
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Normally there is a wealth of things to write at 4 AM, which is when I woke up. Perhaps this is a sign that the fount of mania is breaking. Or maybe I'm just really getting that tired. Or maybe I just need to write about something that's not about me being sick, stupid, or crazy and I just can't think of anything else to write about. Or maybe I need protein.

Ah, this diet. It's like this weird version of the Atkins diet, which promoted a pound of bacon, but god forbid you eat an apple. I can eat all the sugar, fat, cholesterol, and Gummy Life-Savers I want....but nary a banana or a full cup of milk. The dairy thing broke my heart. I'm a child of the 80's and 90's. When they said "Milk does a body good", I took that to heart. Left to my own devices, I can polish off a gallon of milk A DAY. Of all the fried foods, pickle-laden, pasta stuffed items I cannot comfortably eat, dairy is my greatest loss.

A strange thing is happening. As the edema weight is coming off, so is regular weight. Food just isn't as exciting when it isn't packed with toxins, apparently. Not to mention what I am eating is in much smaller proportions, much healthier foods, and I'm actually craving things like fruits and veggies during the day.

Jesse is also losing weight, as he's pretty much on the same diet as I am, being the cook, and doing a great deal of walking with me, as I walk for my recovery. It's funny, for as healthy as our bodies are going to be, we both feel pretty grumpy towards them. Maybe humans really don't know what's good for us.

I got loose skin galore thanks to the edema, but once I'm skinny again, no one but Jesse's gonna see that. They'll just see my tight-ass-little-jeans. I'm down with that idea. And the stretch marks, the skin, it'll bounce back. And even if it doesn't, all that means is (1) It'll look like I had a baby at some point and (2) a body is subject to the laws of physics, which states (somewhere I'm sure) that while elastic things do bend, they also eventually burst. Skin is extremely elastic.

Could be a hell of a lot worse. Doesn't hurt. Not even all that terribly uncomfortable anymore. I'll take THAT over perfection and pain any day.

See? Boring. Boring boring boring.
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And Green Chili Salsa Verde...

Having spent ten years as a professional houskeeper, I am far from unaware that heavy chemicals in an unwell ventilated area can be a silly thing to do. If you are groggy, sick, and have high blood pressure, it turns out it can also do things like nearly wipe your sense of hearing clean.

I did not know that.

I know that now. An hour later after taking my meds, I am finally able to hear others at a somewhat normal voice. I didn't realize just how connected your sense of hearing, ringing of the ears, the cotteny sound, etc, could be an indication of high blood pressure.

Always good to know another symptom.

I like Tabasco sauce. I like buffalo sauce. I like hot sauce in general. Most hot sauce has tomatoes.

I cannot have tomatoes. They are too high in phosphorus and potassium. I can't have A LOT of condiments. So what I CAN have is peppers. Green peppers. Green, spicy, delicious peppers that go on meat, eggs, veggies, and....this is why baby wipes exist.

So I'm learning things. Among them, how not to go deaf and how to properly, delicately, lady-like-dip my steak into the corner-est of the corner dab of green chili sauce on your plate.
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Dude, I don't know what it was about the Klonopin last night, but that shit kicked my ass. I didn't necessarily sleep longer, but hoy boy, I was out deep. I kept telling people that after a while, a body will crash. Like it or not, BOOM, you're out.

Looks like last night was that night for me. Thank. Fucking. God. It's a little frustrating - I'm groggy enough as to be somewhat impaired, but not sleepy enough to get back to bed. I suppose a nap could be done later.

Yesterday was briefly soured in the afternoon. There had been a prescription and labwork to be done in the next week, and seeing as I was up, Jesse has been having trouble driving, and I had the time, I decided to go to these things on my own.

I wanted to both (1) indulge in my own adult errand-running and (2) give Jesse a break from driving, especially in what would have been the hottest part of the day. I have been able to do so little driving, so little anything that the idea of being able to take care of something medically by myself was absolutely THRILLING.

And that, of course, caused a fight when I got back home.

It was the labwork, of which Jesse was under the impression needed to be done a day or two before the next appointment (Instead of the very next day). There was great insistence that I was going to mess up the tests because the results would come back too soon, that I need to ask these things first, that there was an order to these things and I was going to just wind up having to do it all over again.

I had to pull out the referral paper, show him where it said "Labwork previous to next appointment"", and even then, the argument ONLY STOPPED when I CALLED THE DOCTOR'S OFFICE to confirm that I had done an okay thing by getting their requested blood drawn asap. And still spilled the words from his mouth that I needed to get more information before I do anything like this again.

And that's when something different happened for me. I didn't get snarky or sarcastic or snappy. I just shut down. I got quiet. He tried to talk. I told him I was not listening to a word he was saying. He kept trying to talk. I told him I could not hear him. Everything inside of me dropped to a point so calm, so completely professional.

He asked if I'd called Metlife, my Primary, my Rheumatologist, and Other Doctors I Can't Remember (turns out Day 7 out of the hospital, which is apparently more than enough time to wrap your brain about concepts that aren't related to "if I bend this way will I bleed internally?" I quipped "No", got on the phone, and was done inside twenty minutes.

I did this all with an incredibly friendly "Thank you, have a lovely day"" at the end, no less. I was not feeling charitable. I was not wishing the call center rep a good day.

I was packing up the last bit of hope that I would get any sort of encouragement or praise for taking any kind of initiative towards my care at all. I was dismantling my pride at having picked up even one medication of my own and going to get at least one medical appointment done by myself, because I certainly realized Jesse was not proud of me at all for it. I ended my phone calls with perfect professionalism because I knew no matter how well I thought I understood what was being said, surely the flaw would come flying out of Jesse's mouth and I'd simply have to listen to him re-explain it.

It took several hours afterwards, but I was eventually able to tell him all this. I began to cry and told him I needed to start hearing some "atta girls'". He seemed surprised.

I was surprised that he was surprised. And then through our surprise, we came to some slogans, some plans, some ideas to allow for "transfer of power" (bad, bad way of wording it, I know. But hey, Klonopin brain.)

I know relationship troubles like this are EXTREMELY common, especially when one partner is very ill. And I know by writing all of this, Jesse is coming off as a complete and total asshole. But I also know if I don't write it out, things go even more haywire.

Besides, I think I can go back to bed now. Sometimes venting is super useful.
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Up and down. Good days and bad days. Good days that wind up being bad days and bad days that wind up being good days. A must for those dealing with the onset of illness. And a must for pretty much anyone alive, because that's all anyone gets. Good days. Bad days. Days that bounce everyfuckingwhere in between.

Or so I keep telling myself.

Yesterday felt the most up and down day yet. The meeting had buoyed me considerably and I'd gotten home, filled with enough peace to do some cleaning. I even kept up on the kitchen, which has become Jesse's domain. Gratefully so, as I am normally overwhelmed by the prospect of feeding myself. The math and physics of following a renal diet has left me spinning. I sat outside and saw a squirrel, a brilliant, sunrise-colored yellow butterfly. I made note of these things and felt in balance with the world.

Jesse woke up and I, excited to tell him how well my morning had been going, was instead chastised for not returning immediately to bed when I woke up ungodly early. This has been an issue since the day the steroids were prescribed. The thing is, I usually do try. I'll wake up about 2 or 3 hours after I fall asleep - usually to pee - and I crawl back into bed. Twenty minutes later, I haul ass out of bed, because if there's one thing my 35 year old body has taught me it's that when it's up, it's up.

Frustrated as I was with his reaction, I was able to lay down for a few more hours. I took this is a victory, as proof that I'd done enough self-soothing things to be ABLE to sleep. He seemed to take it as proof that he would have been right had I just followed his instructions earlier.

Then one of the ungodly many and surely to be insufferable follow up doctor visits. I was armed with my list of questions to ask the doctor that afternoon. I was determined to be awake, alert. I...did not eat enough before I left, leaving the Xanax to float indeterminately in my groggy body. Muggy, groggy, and irritable as I was, I did not ask most of my questions.

I don't think I asked ANY of them, actually.Food shit, Relationship Upsets )
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And I think I got what I needed out of the meeting. At least for now, for this moment, and by god, if that's one way I know how this works, that's one way it works. It came, funnily enough, at the exact opposite statement of an old-timer. There are what we call "topic" meetings and then "literature" meetings. Pretty self-explanatory. One is usually more personal, the other focuses on the backbone of the program - the written literature of millions of sober addicts.

Both are of vital importance. Newcomers do not get sober without reliable information about their disease, and old-timers do not stay sober without being able to integrate that information into the rest of their lives. But sometimes you get the Bible-Thumper. Not THE BIBLE, but the "BIG BOOK", which is essentially our bible. The ones who say if it does not pertain specifically, completely, and only to the desire to stop drinking, it has no place in an AA meeting.

I disagree - and did so. Strongly.

Okay, I would have done so strongly, but I was exhausted, on the verge of tears, and finally, for the first time in hours, relaxed in a room where I didn't know a single person's name, but every one of them knew me just because we WERE all in that room. I rolled in there looking like I had just come off a hell of a bender. Make-up smeared, obviously hadn't slept in forever, filthy pajamas, cane and coat askew and akimbo. But that's the thing about AA - what you look like isn't the point.

It's the fact that you're there.

The old timer referred to the topic meetings as "dead cat" meetings and elaborated on their uselessness. Me? This is what I said:

"Y'know...thank fucking god for dead cat meetings, because I'm in a place where I need the 12 Steps and 12 Traditions to be about SO MUCH MORE than sobriety." And I talked about that. I talked about how the rules laid out in the program are so much bigger than my sobriety and I how I need them to guide me. I talked about wanting structure. I talked about being scared, about being helpless, and that if they helped me stay sober, then surely they can help me do other things.

From the book, we read a brief passage about a man who'd expressed great reluctance to even TRY sobriety if there was no guarantee it would work.

That particular part caught my attention, because there is no guarantee. Not about sobriety, not about sanity, but about this. About what I'm going through right now, physically, mentally, emotionally. There's no promise it will get better. There's no promise it'll get worse.

I can do everything right and it could all go wrong tomorrow. I could go back to three packs a day and a Big Mac five times a week and live to 80. Life carries no promise outside of its own brief existence and then its extinguishment. That kind of uncertainty is terrifying.

There was a woman there, perhaps a few months sober, exhausted, in a similar state, speaking about her "dead cat". Poverty. Homelessness. The helplessness. The inability to obtain proper health care. Afterwards, I asked if I could hug her and I cried on her shoulder. I did not catch her name. She did not catch mine.

But her tears were mine, if only for a few moments, and my tears were hers.

But maybe, just maybe it's not so bad, because maybe, just maybe, it will work out. The man in the passage of the Big Book - he got sober. He stayed sober. He died sober. However he managed to work his program, he found ways to expand it far past his own desire to kill himself with alcohol.

Alcohol is no longer my problem. But god knows I have plenty others. I can do this. I can do this today.
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I am thinking of hitting a 6 AM Alcoholics Anonymous Meeting. I did sleep, a scant five hours, but that is a scant far greater than the 2 I've been getting. Our AC has gone out, as has our fan. This does not help. But maybe a meeting before I take my first Xanax dose, so I can drive myself.

Cinema, you said things like this are like when an infant finally falls out of the womb. We are so used to being able to touch everything around us. The walls, the confines, the life is clearly defined. It causes such distress to find that sometimes we cannot reach what steadies us. This is how I feel.

The 12 Steps (commonly referred to how 'how I handle my own dumb fucking self' and The 12 Traditions (commonly referred to 'how I handle the rest of you dumb motherfuckers'") worked once. I have no small modicum of faith that they will work again. Sobriety, religion, self-will-of-the-killing-kind, these things no longer run rampant. These are not the goals.

And I know I've not the heart to attend regularly. Addicts walk in on their feet. We leave in body bags. I am not that brave anymore. Often I feel a little embarrassed when I hit my one or two emergency meetings every few years. But it's humility and surrender bringing me in this time.

What's there can still be used. I still have a few days until talk therapy. There's an AA meeting nearly 24 hours a day in this city. Twelve step programs are tools within my reach. As with any "belief" system, they can be adapted.

And if I am in need of anything lately, it is adaptive.

There will be coffee. Free coffee. Addict coffee. The kind that will kill the living and wake the dead. It's no secret that sublimating early addiction often involves inserting another addiction in its place. Coffee is where alcoholics excel. Or at least where we figure out a legal drug with socially acceptable consequences beats the hell out of a bottle hotlined with a rail of coke.

I kinda get why people COULD get high off Xanax or Klonopin, except it doesn't do the same thing for me as other people. Go figure. I finally get "fun" drugs and it turns out my brain chemistry actually needs them, so it processes in a normal fashion. The idea of drinking or adding anything recreational on top of these drugs is so wildly nauseating that I can only envision the end for a few seconds. A few, horrible, heaving seconds.

I know those two drugs are at least supposed to be temporary stop gaps. Measures in place to pry the mania apart from the steroids. But what if I continue to need them? Does that make me addicted to them? Is the personality change, the calm, the mellow, from swallowing those pills make me somehow dubious in my recovery?

Is it OKAY to like how calm and less scared I get on these meds? Does that make me weak? Does that put me in danger?

These are actually NOT questions one wants to pose to a general room full of recovering addicts. We run a tight ship, a hard line, and the answer will always be "Drugs are bad, mmmkay?" It turns out, though, while I am very eager to run back to a set of basics that worked before, I'm learning Life Itself is a little bigger than "just saying no."

It's 5:06 AM. It takes forever for me to get ready now. Time to start putting on real-people-things. Maybe it'll help.
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I am flattened. I am Wiley Coyote. I am not as smart as the roadrunner. I hit a wall. Please let me have hit the wall this time. I am too tired to keep running. I don't want to take one more step.

I have to see a wound specialist, as while my wounds are healing, they are doing so at a glacial pace. They put me on Xanax twice a day, no longer PRN. They put me on Klonopin to take at night. I'm to take 400 mgs of Seroquel. I am to sleep. I am to sleep forever, it will seem. I will set an alarm, for I have a follow up tomorrow with another doctor. Another one later this week.

One almost every day for the next week...lifetime...it seems. I am worried I will be so groggy on all these new sedatives that I will be useless for collecting information about my recovery.

I guess that's why we take grown ups with us to doctor's appointments.

It's the small things that can make a person feel so useless. I know the force of the sobbing I want to do right now is little but bodily and emotional exhaustion. It doesn't make a difference. It's still tears. It's still crying.

And I'm too tired to cry. I just want to give up, and that means giving up crying, too.

I guess I can give up for tonight. It's bedtime. Bedtime is a good time to give up right for the day, right????

If I try hard enough, I'll be human again. I just don't want to try anymore tonight. I won't give up entirely. I won't give up forever. I just want to give up for tonight.

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* What, EXACTLY, are the names of all of my diagnoses and what, EXACTLY, do those diagnoses affect?

* What, EXACTLY, are the names of concurrent issues, such as heart trouble, COPD, etc?

*What, EXACTLY, does each medication I'm on do?

* What are good "emergency meds" to always have on hand?

* What are the severe reactions between these meds?

* If I experience edema, how do I know if I should drink MORE or LESS fluids?

* Which of these meds will I be on for the rest of my life?

* What are the first noticeable flare symptoms I should look for? Are they personalized?

* Are there times I should disregard the advice from an Ask A Nurse and seek different help, and if so, when are those times?

* Do I go to the ER, Urgent Care, or make a doctor's appointment if I need to seek help?

* Should I carry a list of my general diagnosis, symptoms, and meds with me everywhere I go?

* Is there a different combo of steroids? How long will I be on steroids?

* What are the flare up symptoms for the following:






Wheat/ Beans
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So that last entry wound up in a completely different place than it started. And I want to write something profound about it, except there doesn't seem to be anything profound about it. I wrote and that's just where it went. The end.

I did tell Jesse afterwards, though, that I felt sated. It was like I'd dug out some splinter that I hadn't even realized was there. The cigarette after the last entry was soooooooooooo gooooooooood.

(Yep. Still smoking. Yep. Cut back. Yep. Three packs a day to one pack a day. Yep. Getting there.) Jesse and I have moved the majority of our smoking out to our balcony, which greatly cuts down on frequency. It's also just nice to be outside, as the weather is mostly agreeable. I also refuse to miss another season.

The sunlight is a problem. I loathe suntan lotion. And while I'm an aging goth, I adore being in the sunlight. It's good practice, especially for those with bi-polar. All those delicious, naturally occurring vitamins, plus general cheer - these are important parts of my treatment. Now I've got to get a sunlamp, which I don't like near as much. Luckily, women are at far, far less risk for facial cancer, as makeup tends to act as a barrier against the bad, bad, kryptonite UV rays. And I wear a FUCKTON of makeup.

Hats and whatnot I am piling up, but there are still bare arms and eventual bare legs. There is also the issue of swollen foot tops stuck in flip flops. They're only shoes that I can get my feet in without chopping off my big toe, ala Cinderella-Stepsisters. I miss my heels. Omg, I miss my boots. My curb-stomping, I-don't-care-that-the-90's-were-20-years-ago boots.

Well, that's that for now. I like to write in the mornings, during my alone time, which as Jesse and I are on the exact same schedule, doesn't come but perhaps an hour, maybe three, if I wake up at 4 or 5 AM.

Maybe later. At least it explains part of why I don't sleep. Sleep gets in the way of alone time. Sorta mostly alone time, at least. He sleeps, which means lights out, sound out. Can do happily for the most part.

Still, need to find a time for some alone time.


Sep. 20th, 2016 07:41 pm
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Two quotes on writing.

May Sarton, quoting a writer (Pirandello) who said "One cannot choose what one writes - one can only choose to face it."

Natalie Goldberg, who says "Right now, I am sure I am the only one with the burden of writing. I do not do this for you. I do it so I can shut up the gnawing, dimwitted critics in my brain who tell me I am nothing."

I spoke of art in terms of choice earlier. Ah, the most maddening thing of all the human condition - the moment you think you have it pinned, it shifts. The clouds cradle over the moon, the sun supernovas in front of you, but you know your feet are still on the ground. And at the exact same time you are also spectacularly aware that your feet are spinning on that same ground at 1,000 miles per hour.

I managed to snag an emergency follow up with my primary doctor tomorrow, after having originally had it scheduled 3 weeks out. We gotta do something about these steroids. I love this. I'm worried as hell about this. I don't want to sleep.

We upped my Seroquel to 400 mgs. I'm on Xanax. Five hours of continuous sleep is a miracle. Surely there's a lower dose of steroids. Some combo we can use to reduce this, because the longer it goes, I don't want to stop.

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.

I know part of it this isn't the mania. I know part of this is that for the first time in over a year, my body is stabilizing and I have real-people energy. I am not fighting the urge to sleep 14 hours a day. My kidneys are working. I'm sick-still-recovering, but my doctors are telling me part of this is normal.

"You're not killing yourself anymore," my kidney doctor said. "That's going to feel good. And I want you to keep up on your mental health, too."

His name is Dr. Max Glazer. Jesse says he's going to become my best friend. I don't know about that. I REALLY wish his name was Max Rager, but that's because I'm in love with the tv show "iZombie", in which the bad guy is named Max Rager.

My tags are such a mess right now.

Probably more babble later. Hypographia - we are in full swing, baby. Oh yeah. I don't know what the hell I'm choosing to face right now and I do this because if I don't, everything else stays dimwitted.

Time to pull out another sidejournal. You know I've had like 3 of those, including daily LJ postings, over the last 7 or so years? All of them with fucking hundreds of pages written in them, concurrent with whatever I put on here? Save yourselves, save myself, words and words and it's not going to stop until it stops.

Better writing than other things, though. I found my drug. The one drug I CAN do. The one drug that doesn't harm me. I can shove the keyboard straight into my arms, layer the cord over the ropey veins, and slam the pressure point as hard it'll go. Indent my skin and bleed something permanent. Something that can be put down, over and over and over again until the scar lines run deeper than tectonic plates.

Words can be erased. They can be burned. They did that. YOU did that, and you know exactly who you are. You know exactly who I'm talking to.

And they're still here, aren't they? My words. I still remember them. I'm still writing them. You did not stop this - and you never could have, even in your most grandiose and pathetic fevered dreams.

Try to burn this, bitch.

I fucking dare you.
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Jesse and I tried to get into a conversation about art yesterday. I waived off. Art is one of those conversations that can get so pretentious, so nebulous. It's just too big of a subject. I don't think of myself as an artist. I write. I understand that the basic need of an artist IS to madly create. But when it comes to anything but the written word, my creative base does not twist, turn, or in any other way yearn to be seen. I like to write. Screw you if you don't like to read.

Besides, if one wants to get really broad and boring, Life itself is Art. And yes, so is dying. Shut up and get a life, Sylvia. (Ha ha. I just made a Sylvia Plath joke. I'm such an asshole.)

The conversation did, however, spark one question in me: Is everyone compelled to create something? Maybe a couple wants to start a family. Maybe fixing a broken engine puts together a new machine. These ARE acts of creation, just more literal ones. Is that art? Is art really, honestly, truly anything you make it? Looking at it from that perspective, the parent who rises, exhausted and agitated, for a colicky baby puts it as much work as I do. The mechanic who spends a hundred a month on a good oil cleanser for his hands puts as much work in as I do.

I'm a staunch believer that a writer who does not write is like an alcoholic courting a job at a Vegas nightclub. I also know that the drive to create does NOT have to drive one mad.

Silly questions. They say if you speak to a person long enough you've eventually cover the Four Basics of All Human Interaction: Art, Sex, Love and God. I'd believe it.

And after morning cleaning, errands, and accidentally locking myself out of the apartment, thus accidentally waking up Jesse as maintenance had to fix it, I am done with this entry.

I gotta wash my medical underwear. It's surprisingly comfy.
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I've decided what my next tattoo is going to be. I'm gonna get my kidneys stitched into me. Maybe with a wolf eating them, bloody sprays ala Evil Dead. Super cheesy and spurting. The whole "my lupus affects my kidneys" thing. Maybe come tax time.

Subterania, I was finally able to try on the dress you sent. I cannot WAIT until I am able to wear it! You know that's the perfect kind of sundress, right? I can wear delicate boots, pretty sandals, and slamming goth boots in a dress like that? Versatile! I will be so happy to take pictures when I'm able.

And Daha, got the CD! What show is it that you do anyways? What time your time can I hear it? My insomnia fluctuates an hour or so either way, but surely there's a way I can catch it at some point.

I've decided that if I'm going to lose my hair, I'm gonna go for the gusto. It's Halloween and my work has no restriction on hair color. I'm buying wigs, hair falls, fun headbands. Bring on the green, the purple, and hell yeah, I'm back in love with Ariel red hair. So I bought some mid-price wigs and falls and will be researching the hell out of their wear and care.

Of course, I'll get some professional regular falls, too. I'm sure at some point I'll need to look like a real grown up.

You know what scares me the most about this whole lupus/kidney thing? No one knows if you're born with it or if you develop it. Not really. I could have been incubating this thing inside of me my whole life or else I just happened to roll a bad set of snake eyes on the gambling table of Life. Either way, knowing won't do a goddamn thing.

I don't like secrets. I loathe medical ambiguity even more. People keep telling me the HOW it came about isn't anywhere near as important as the WHAT to do. And they're right. I know they're right. But if there's one thing my crazy loves to do, it's to drive me even crazier. Much like losing sanity points in any Cthulhu game, my brain just can't wrap itself around what happened.

This is why I'm not a fan of mystery novels. I can never figure out who the killer is before the author reveals it.

Story of my life.
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You guys are totally right about the cognitive difficulty thing. Today makes Day 3 out of that damn hospital bed I was stuck in for a month solid. Speech is still a bit on the difficult side sometimes. It's why I've been writing even more than I normally do. Spitting out words like "I'd like a to-go cup"? Not always easy.

Being able to write it out, where I can endlessly, obsessively, and repetitively, edit and revise exactly what I want to say? PERFECT. It's why I never mind getting comment edits in my email, as revision is part of what makes a good writer. For the love of glamour or grammar, there it is.

David used to brag that he was such a good writer precisely because he didn't edit. Poor boy missed the point so hard that the pencil sharpener fell off the desk entirely.

Speaking of David, something that's been drilled into my head for the last, oh 20 years, finally hit home. The whole time in the hospital, I was far, far too sick to even contemplate what his life is like right now. Funny how priorities like "not dying" can eclipse things like "making fun of your ex-boyfriend."

So out of sheer boredom yesterday, I flipped to his twitter. I saw he's getting married. And as bored as I was, what came out was even MORE boring. I went "Well, that's just not exciting." And it WASN'T exciting. It was so tedious and unremarkable that I spent about 20 seconds on the page and closed it.

There's nothing there I need. It's not even funny anymore.

In the rooms of the 12 steps, you hear the phrase "Holding a grudge is like taking poison and waiting for the other person to die." You hear that phrase A LOT. And I've been holding this poison for over two goddamn years, which may have very well led, in part, to actually physically poisoning me.

Jesse said it's okay to remember how much it hurt. That it's okay to remember how angry I was, how latching onto David's pathetic nature gave me a wonderful handhold to dig myself out of him. But I can keep that a memory. I do not have to continually breathe life into those memories.

Because in the end, who was David? A raging asshole who didn't even have the class to be a self-aware abuser. He acted not of planning or malice, but just out of being a sheer, entitled child. Is that worth spilling over, over and over again?


Cassie said something profound the other day that I was able to apply to this....and seemingly every other "positive thinking" that keeps popping up.

"I'm not a positive person", she said. "I just remember how negative I was and I'm trying to balance it."

When she said that? Mind. Fucking. Blown. I don't have to try and look for any positives in that relationship with David. I don't have to try and look for any positives in having gotten out out of that relationship with David.

Maybe all I have to do is remember how negative the whole thing was and just try to balance it out with being more positive today.
quirkytizzy: (Default)
There was a young man out on the balcony a few nights ago, speaking of how beautiful the fall is. It's unusual for me to speak to strangers, let alone one that lives in the same building as I do. But he was right, it was a beautiful fall night, the full moon twisted with beaded clouds.

And I realized that I have missed summer. Oh, I've certainly existed within summer. But I had been so sick, so stressed, that the natural haze of it all had passed me. I missed an entire season. It's not summer anymore.

It's fall. Whatever I remember of summer is marred by what turned out to be something awful and I was saddened. Greatly.

A week or so ago, Jesse picked up tickets to see one of my favorite bands in the entire world, who are playing at a super convenient bar literally just a few miles down the road from where I live. Icon For Hire. They have taken every diagnosis they have, the pain and strength and fear from it all, and I walk with it. I've used it as a cane. As an anthem. Sometimes it helps me connect to the fear that I must walk through. Sometimes it pushes me to scream past the fear.

Not a sound, word, nor pause wasted in what they sing.

They released a new album a few days ago. And I know what I need to do now. There IS a balance between the rage, the proof of the painful past to propel forward into something less painful. I don't know where exactly where that balance is, but I'm going to find it.

I'm also not going to be afraid if I have to fight to find it, either. There has been such a battle in me, wanting to find a way past needing to hurt to heal, but knowing just how valuable such a skill can be. I could not give it up if I tried, nor would I.

I want to learn how to keep making it work FOR me. I want it to learn how to make it make me NOTICE things, like seasons, like the difference between rest and restlessness. Being so sick for so long this year, the intensity has done nothing but wreck me.

It does not have to wreck me. It WILL NOT wreck me. I may be a contradictory mess now, craving both serenity and the roughage to keep going. But I'm going to figure it out. And with Icon For Hire writing the soundtrack to everything that is going on right now, I fucking know I can.

"We didn't come this far just to get this far
You didn't work this hard just to fade to black

The pains didn't change me - I changed my pain
Pain didn't change me - I changed my pain!
quirkytizzy: (Default)
So the edema is still there...forever, at least it feels like. I'm on my pills, which helps. BUT -

Conventional wisdom says flush the fluids out. Drink lots of water. This is part of why I was hooked up into an IV for three weeks and flashing half my meshed-underwear butt around the hallways walking.

But right before I left the hospital, they actually had me on a bit of a fluid restriction deal. Minimal drinks, and only what you need to not choke to death during meals.

How do I know which one I am supposed to be doing right now?

I'm being super active, too. If I don't get up and walk, it feels like someone just shoved a spare tire onto my hips. Turns out you can be a little too active, though even that feels good, too. But I ain't sitting in bed or on a chair unless my body is going "Dude..." and even then, it's usually Jesse going "Dude, sit or you're gonna bust open one of those new stretch marks you've got."

And I sigh and I sit. Except for just now, in which I unapologetically took a solid two hour nap. I feel good. I could stay up. I could go back down.

I don't care about the stretch marks right now. It was how much they hurt and how uncomfortable they were that were freaking me out before. I am so damn vain. I swear, any of you who were to meet me - or have already - know that Cleopatra didn't have shit on me and my eyeliner.

But this experience turning my body into a freakshow kinda makes me go..eeeehhhhh, fuck it. We're going to Walmart, NOT meeting for tea with the Queen 'o England.

Okay, so I'm still babbly. Not manic anymore. Hypo, if even only circling that, edgewise, even. Didn't sleep much last night. So the REAL QUESTION I NEED HELP WITH -

is should I dump some ice into some tap water and begin guzzling, or should I maybe just have a sip of lukewarm water, so that I don't notice how freaking thirsty I am????
quirkytizzy: (Default)
And now that I wrote that somewhat pretty piece, I find myself reading more about lupus. Things that will be annoying and expensive:

* Hair falls and extensions. While what little of my hair remains has become healthier (thank you, endless soylent-hair-green IV drips in the hospital), it does not look like the hair loss will slow down. I've got bandanas, hair clips. That will work will for a while longer.

Eventually, though, I'm going to have to get hair pieces. It's Halloween season and I'm certain that with the right buys and Halloween stores, I can finally do my hair in any insane style I want. But as I still haven't been able to figure out why I haven't been paid my short-term disability. The money received from your hearts and kindness was all put towards bills for the next month (to which, Subterian, we found it! Thank you SO MUCH! AND THE TEA! JESSE AND I ARE SO EXCITED ABOUT THE TEA!) So I do have a little wiggle room to figure out how to afford things that simulate hair.

But as of this moment, there's not much to do but sigh wistfully when passing the wig section of Walmart.

Hair loss is also usually a first sign of lupus. I'm confused about the timeline of this disease. I've always gotten tired faster than others, but I chalked that up to (1) a manual labor job and (2) all the drugs I did when I was younger. And my body WAS young enough to bounce back. But the rash I remember came with David, to which I attributed to the enormous stress the relationship had become.

I suppose lupus could come on in stages, like most any illness. I guess if there was a "first real sign" of lupus, the recent hair loss could be considered the draw of the sword that made it unavoidable.

And it's a damn sharp sword. My hair is not growing back.

* Edema is a common symptom of lupus. I was really, really, REALLY, hoping this was an initial flare-up deal. The hair loss, fatigue, whatevs, that I can hide or alternate. Jumping from 140 pounds to 200+ inside a couple of months? That's hard on the vanity, skin, AND wardrobe. Super, super noticeable.

* Thanks to the month trip in the hospital, my arms are covered, up and down, straight forwards and backwards, in big, nasty, bruisy, track marks. Looking at them this morning, it occurred to me that despite having once been a bona-fide junkie, the marks do not at all trigger me. I see them, think they mar my freckled skin, and that's it. Eight years ago, having to walk around with bruised veins would have sent my head spinning.

I guess 15 years clean does eventually count for something.

* Funnily enough, while searching through Google University trying to identify what would later be diagnosed as "the lupus rash", it was the only disease that covered the rash I had. Red, raised, scaley, but not itchy in the least. But I don't have joint pain or muscle pain, and I've always been tired, so surely lupus was out of the question.

Ha, ha, Teressa.

* I'm gonna have to start wearing sunblock. I dig the pale look anyways, but finding CHEAP makeup that works over CHEAP sunscreen is a pain. Lupus, as it turns out, is a layered disease. This causes other things to have be layered.

Have you ever tried to layer sunscreen, liquid foundation, AND makeup setter spray? My god, Joan Rivers had more natural skin than that.

* The temperature fluctuation was also another big sign of the start up of lupus. I'd never really had a problem with being cold before, and yet the few months before it all fell apart, I would be shivering at my desk in a shirt, a long sleeved overshirt, a hoodie, AND A COAT. Complete with a fuzzy neck collar. And still manage to be cold, all the while my forehead burning hot.

No fever. No discernible difference in a vent above my cubicle or not. I just. Couldn't. Warm. Up. My coworkers had begun commenting on it. Unfortunately, this has continued. A large part of this is the edema, which, who knew? Large amounts of water swelling can actually prevent blood from easily moving around your body. So that blood gets complacent and bored and just sorta hangs there and doesn't rub elbows with any other blood, making it warm.

I mean, jesus, I'm in socks, fuzzy slippers, two pj pants, a shirt, an overcoat AND A MOTHERFUCKING ROBE and I'm not gonna take even one piece off when I take a nap here shortly.

Lupus and kidneys are somehow vitally connected. I have the one called "Lupus nephritis". I'm still reading up on this one. I never really thought of my kidneys before. Who really thinks about internal organs, anyways? Doctors and psychos, that's who, and I am neither. And I was always like "Hey, I've got two kidneys. What's the big deal with losing one?"

That is exactly the erroneous sort of thing you begin to believe watching too much tv.

* I'm experiencing some level of cognitive dysfunction still, though I believe this is the meds. I was able to keep my shit together long enough yesterday to schedule two doctor appointments. The third one had me sputtering AND stuttering to the poor receptionist for, like, a solid two minutes. A solid two minutes of "Hi, uhm, my name is Teressa, I, oh, I'm sorry, I need to, uhm, there's a thing I have - uhm, just a moment, I apologize, argh, I mean - ". Two minutes spitting out guttural sounds is so much an infinity longer than it seems.

She eventually got my name, pulled up the records, and saw what had been transpiring. The conversation flowed much easier after that. I hear that this kind of communication problem is not uncommon with lupus.

If this is something that continues beyond the settling of my meds - or gets worse - it's going to severely impact my self-esteem. I'm a writer. I like words. I like to use as many words as possible, even while speaking. Not being able to exercise that would make me far, far less fun and funny the person I know I can be.

* I have a lot of nervousness about returning to work. I know they will bend over backwards to accommodate any special ADA needs I'll have, either temporary or permanent. I know they will do everything they can to roll back the black marks and corrective, punitive actions they had to take concerning all my missed time earlier. I'm confident of that. The people I work for are wonderful.

I've just spent so many years in jobs without benefits, without good workers, without people willing to look at alternative work or corrective actions, that there still remains the strong fear of getting to work and having my entrance badge denied. If that happens, I'm going to lose it in the lobby and just begin sobbing.

I've cried enough lately. I'm really kinda over it right now. I've got till the end of September and depending on doctor's orders, possibly longer. But old habits scraped out of poverty die hard. A part of me feels like since I can mostly walk, I can wipe my own ass, and I stutter only SOME of the time, I should be fine.

My metrics at work would probably disagree, though.

* Jesse made a brilliant comment the other day. One that I immediately took both heart and store. I was bemoaning, as I'm sure I always will be, the complications of arranging medical care in America. Jesse waved his hand and said I was in college, completing several classes a semester, PLUS filling out paperwork for 20 grand loans a year. "It can't be that much different and it's GOT to be AT LEAST the same amount of paperwork", he said.

And then BAM BOOM, I realized he was right. Each doctor class is, well, a class. Each visit and set of labwork that I have to authorize is an assignment. If I want a good grade (i.e - good information on my health status), I have to DO the assignments. Teachers give you syllabuses. Doctors give you records and discharge papers. Same sort of deal, just separate industries.

So I went ahead and bought a goddamn school planner from the dollar store. And it's WORKING.

It's a silly looking one. Dollar stores mostly run stationary for kids. But hey, it works. The lines are big, I can put down names, times, numbers, and addresses. It WORKS and that's what counts.
quirkytizzy: (Default)
I want to learn how to be more positive.

Okay, fuck that. What I really want to learn is how to be less surly. I still and will forever loathe "positive thinking". I will always find it smacking just this side of foolish at best and dangerous denial at worst. However...

One of the most irksome, exasperating experiences of being catastrophically ill is that it drives all the life-cliches straight into your face. The ones you can't stand, the ones that have no purpose outside of small talk, the ones you know for a fact exist only because people run out of relevant things to say. Stop and smell the roses kind of bullshit. I say those things. You say those things. We all say those things.

And until a couple of weeks ago, I loathed that any words like that would ever fall from my lips, let alone my ears being chewed up from getting it from strangers, too. The English language is broad, the human expression is near infinite, and as writers, we are trained to rearrange words in as many a different order as possible. Therefore, cliches are bad.

But now I know the truth. Not all cliches are bad. It's a shame that I am getting this now only on my way into my 40's, but I think I've finally figured it out. A cliche is an experience that is so common, so universal, that it becomes unremarkable to discuss. A cliche is a shared human experience across millions, billions of people. We don't put poetry to it because whatever the cliche may be, it's happening right now, right here, all of the time, to every and anyone in the world at this exact second.

But this doesn't mean that I or the experience is insignificant. It means I am not alone. It means I am a viscerally, breathing connected piece of the entire human race, by virtue of simply existing. All I have to do is crack my eyes open in the morning and I am basting in a pool of things that everyone else is, too.

And I no longer want to resent that. I'm not the only person who has to handle jerks everyday at work. I'm not the only person who feels despondent when I think of my broken family. I'm not the only person who shudders at having to cook for myself or stubs my toe or is sometimes a completely irrational asshole.

I want to learn how to be okay with being a smaller part of all the bigger parts. The whole of human life itself is cliche, through and through - and that may be the singlemost greatest thing that connects us all.

I want to learn how to be okay with that.
quirkytizzy: (Default)
I made the mistake of shotgunning all of my morning meds upon immediate awakening. That part wasn't the mistake. The mistake was not eating something small first, of which presented itself inside ten minutes of nausea. I am now eating some rice pudding. Keynote: The human body does not like ten tons of chalk just slammed into it.

I am home. Not only am I home, but I am ambulatory, having little to no pain and am clear-headed. My appetite is here, normal, and rescheduled for my whole "don't salt yourself to death thing." I got six hours of continuous sleep. My eyes widened in complete shock when I opened them and saw the time. Six hours was a dream before I got sick. Now? It feels a goddamn miracle.

I can dress, bathe, clean, etc, myself BY myself. It takes time, of course, but these are things I could NOT do with the last release. In other words, I feel like a million bucks. No headache chewing at the edges of a migraine, either, which how I'd woken up for forever now.

And we all know how cozy me and my migraines are.

I haven't had a migraine in a month. I haven't had even a headache for a month. I haven't had even the teeniest, tiniest, itty-bittyiest TWINGE in my head.

A seven day migraine is what originally, finally propelled me to go to the ER. That's how we were able to find out all this other stuff. To be free of one of the most debilitating conditions I have had to live with...turns out if the rest of the body gets back in balance, sometimes so can your head.

Like, literally.
quirkytizzy: (Default)
Urination and I now have an adversarial relationship. Necessary, but I resent having to haul my body, slave to its expulsions, in timings occasionally measured in minutes. Minutes that it often took me, tossing and turning in agitation, just to find the omg amazing most perfect position in bed where I could sleep the sleep of the gods...which then needs to be abandoned, because no one ever heard of Zeus pissing the bed.

At least the weight is now 171, which is a 30 pound drop in 3 weeks, but good god, if only someday they'd invent a painless catheter. (Never had one of those before. I'd imagine the pain is no where near worth the convince of staying in bed.)

The problem is that 171 still leaves yet another 30 pound drop to get where I was before. I figure they'll let me go before I hit my original weight. This is not Weight Watchers, after all. I can work on taking off the rest at home.

The release date is still being carried on a magic scroll by a leprechaun riding a unicorn in a cloud of cotton candy (in other words: up in the air and no one knows), but we're getting actual movement.

I'll admit to no small amount of apprehension and nervousness, though, that I will be soon released simply to return to another ward within a few days of freedom. This has simply been the thrice repeated experience - and it happened in a matter of DAYS of each other. It's not so unusual to worry that it will happen yet again.

But like you guys said: If it does, it's normal, because body-freak-outs, and it doesn't, then that's normal, too, because body-healing-inwards.

I am getting SO FRUSTRATED with my inability to start writing the Other Big Things going on. Things Inside. I suppose in time those pieces will begin settling and I can put words to them.

I have as many questions about the emotional and....no, not JOURNEY. I HATE that word, especially when used in an emotional or psychological sense. It just sounds so wishy-washy. But I have so many questions about all of these new things I want, all of these old things I want to discard, and what to be and put in the all of the places that will now be different shapes.

Jesse asked me yesterday, "So, do you have any answers?"

I shook my head. "No," I said. "There aren't any answers. There aren't ever any answers. But I don't think the answers are what's exactly important anymore."

Although I'd kill for an answer on how to permanently, but safely, remove a bladder. God, all the time I've wasted peeing like a maniac over my life...


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