Lots of HTML formatting means I am upset

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. It demolished me this morning.

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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(no subject)

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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Adventures in Cleaning

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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Labwork, Jesse,

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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Arguing about doing something right

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 UpsetsCollapse )

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Dead Cat Meetings

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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6 AM Meetings

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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Keep trying

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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Doctor Questions - Ya'lls Got Add-Ons????

* 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:

Protein

Phosphates

Potassium

Sodium

Dairy

Wheat/ Beans

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(no subject)

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.

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