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I was finally released, the world's most impatient patient, yesterday afternoon. Total damage report by the end of discharge:

* One fractured rib, which I did when I hit the toilet passing out on the way down last week. I wasn't told this until release, but it explains why my back hurt like hell the first couple of days. The doctor was astounded that I hadn't complained about pain while in the hospital. "Well, I mean, it *ached*, but it didn't really HURT after the first couple of days. I thought I just bruised it", I said. She shook her head and said I must have a HELL of a pain tolerance.

* About 15 pounds of edema, to which I am more than happy to let roll off my body naturally. It'll probably take about a month. No drugs, no diuretics, no nothing that will dehydrate me back into illness. I've discovered that the relatively quick fix for my skinny-vanity with drugs is NOT worth further injuring myself.

* The daily usage of the blood pressure cuff Jesse got last week. Suddenly I recognize the importance of these little things called "blood pressure" and "not dying."

* I have ulcers, which I understand isn't exactly an uncommon thing, but mine need to be especially monitored, as I lose precious red blood cells (hemoglobin???) when they act up. Apparently red blood cells are, like, SRS BUZINESS PEOPLES. I did not know this.

* A strange, quiet, and oddly neutral acceptance of the fact that my body is not like other 35 year old peoples bodies, and that it will require a different lifestyle than other 35 year olds.

* Acceptance, I'm finding, is a process, not an event, and I will have to come to this conclusion time and time again. But that's okay, because I think I finally figured out that THAT is how it works.

I've more to write. So much more. Always so much more. But one other thing I have to accept is this: I'm only about 12 hours out of the hospital, 4 days away from almost having died, and exhausted, despite having slept wonderfully. I want to clean, I want to write, I want to be sparkling and twirling with taffeta. But part of accepting my body means accepting that right now, especially now, the smallest things are going to bitchsmack me, and it's okay to rest when that happens.

It's okay to rest when that happens.


Jan. 21st, 2017 05:08 am
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5 AM. Life slowly dawns on a barren hospital. It's as if I and the blood draw nurse are the only ones haunting the linoleum floors of this ward, even as I know I am only one out of what must be millions of sleepless patients across the nation.

You are so right. You guys are always so, so right.

I want so dearly to go back in time and cup the sobbing face of my 17 year old self, torn inside and out, and tell her that it will be okay. And I know my 50 year old self will want to do the same here, to embrace my 35 year old self, and tell her that it will be okay.

Why is self-compassion so difficult, even if we can clearly see it is the only thing that will save us?

But 50 seems so far away right now, and we can only consume the time we are actively living in. And in this time, I stare at the world spinning, passing me outside the windows. I watch the parking lot fill up, car after car. I watch people - doctors, visitors, people who will soon be looking out of windows just as I am right now - spill out onto the pavement. I want so badly to be out there right now.

For a cigarette, if nothing else. It's funny - coming so close to dying only made my wishes to hold onto my vice stronger. Even with the patches that are now permanently on my prescribe-daily hospital record, this time, the craving for a cigarette is beyond palpable. I can taste it this time, whereas normally it simply is a thing I'd like to do, but can't because I'm in the hospital.

I don't quite understand the logic behind that, only that if a nic-fit were a blade, I'd have a hell of a bloody tongue right now.

The clock crawls. It is no one's friend. From the seat of a hospital bed, it is a ridiculously low-action place to be in. Not a whole lot to do. Sometimes the words provide themselves, sometimes they don't. Life in general, but amplified in a building where people go to live and die. One can only stare at the clock, or at the screen, or out the window, for so long before your eyeballs start to bleed.

I'll go get a cup of coffee. I cannot leave this floor, as I am on a heart monitor. But the floor lobby itself has coffee.

Coffee and a bigger window to look out of. These are good things.
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I don't believe in private hells. So here's the public hell:

* They put me back on steroids. Day 3, I feel it. I'm pacing. I'm crying. I'm elated and I'm plunging. I can't get things to be quiet. The Dr reassures me the prescription I'll be sent home with will be a taper dosage.

* I'm fucking terrified of this.

* I had, like, this plan. Thirty-four years of scraping and screaming and bleeding just to get a jump on things that Normal People have, like good jobs, a regular schedule, a mental state that doesn't torture them.

* And then it was GONE. It was taken away from me in a single night, just as I was finally getting my hands around it. What the hell am I supposed to want NOW?!

* Why the fuck can't I just see this for what it is - another thing I'm going through? Why does it have to change everything?

* There's just not enough of me to hold all of the anger and grief and fear that's going on with all of this. I'm just not big enough for it all.

* I thought I was ready for this. I'm not.

* There's such a chance here, such a rare fucking chance for me to retake everything in my life and turn it into something brilliant and shiny and new.

* And I'm petrified that all of these feelings of pain is going to take that chance away, too. Like, I'll never be able to come through this a changed woman if I keep feeling so goddamn insane.

* I don't want to keep losing chances. And now I'm wise to the fact that I'm not always the one in control of what chances I DO lose. This is supposed to be liberating. It fucking scares and enrages me.

* I feel so fucking impotent in my own life, even though right now is the time I could do the most change ever.

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For someone who damn near died in her sleep yesterday, I am tired.
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Guess whose in the ICU and was, apparently, mere hours away from shuffling off this mortal coil? If you guessed Teressa, you guessed right! Please enjoy this complimentary year's worth of Turtle Wax and this huge bucket of Jello, which is the most solid thing I can eat as I'm on a liquid diet for for some ungodly reason. I hate Jello.

How it all went down:

Jesse, after picking up my prone ass from the floor for the third time in as many hours, snagged a blood pressure cuff from a friend. 80/50. Not good. Neither of us knew if it was hospital worthy, so I called the Ask A Nurse. The nurse strongly recommended to go to the ER - and more than a little horrified that I'd spent three days actively passing out before even considering medical help. So we pile my Ariel bag with hospital overnight needs and mince our way to the car.

The waiting room at the ER is packed. Standing room only. We didn't want another hospital, since this is the one with all my records and doctors. They know me and my case here. So, I told Jesse that we'll just go home and get a clear start in the morning. I did not want to wait six hours just to be seen.

After all, I told him, it's just low blood pressure. It's not like its life threatening, its just really annoying, I said. Against Jesse's wishes, we go home, I take my meds, and I go to bed. Seconds before falling asleep, I had the strangest feeling. I thought to myself, as unconsciousness drug me under, that this felt it was going to be the deepest sleep I'd ever had.

I would've been right.

The next part must make Fate giggle so damn hard, me having said it's not life threatening. Enjoy it while you can, you fucker, cuz I swear if I ever meet you, I will set you on fire and bury the ashes hundreds of feet down. It turns out blood pressure that low CAN be fatal. Turns out that had I gone into the ER the first time, I was straddling the life/death line close enough where I would have been whisked into treatment right away. Alright, lesson learned. Don't hesitate to go the ER. Whatever.

What comes next is Jesse saving my life.Literally, flesh and bone, brain activity still registering, heart continuing to beat inside of my ribs kind of saving my life )

Jesus, this turned into a novel. I realize I hadn't posted in 5 days. That was unusual and should have been a sign of Things On The Horizon. I do intend on writing back, Franklanguage.

So I'm planning another 7-10 day hospital stay, all the while pondering the shock and benefits that came of it. I'm on the medical side this time, so I can have my fill of net access. So yep, expect post whoring.
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I slept in until 5 AM. This is unprecedented. Mentally, I feel fantastic. Physically? Well, you know how I said I wasn't a graceful person, and me passing out (especially because of my extra clumsiness) runs the risk of hitting something on the way down and hurting myself?

Yeah, there was a 30 minute period or so sometime in the night that I was awake, because I'd gone to the bathroom, passed out, and somehow hit the toilet with my back on the way down. Better my back than my face, but now my back is in incredible pain. I'll be hobbling around on a cane for a day or two, that's for sure. It seemed like it took forever to completely "come around", even with Jesse practically carrying me from the bathroom floor to the bed.

Disorientation is a bitch. I wasn't even sure where I was at first. I've passed out before, but somehow mixing the pain of hitting the toilet made everything even MORE confusing upon coming to.

Still, I somehow managed to sleep after that. Slept regular-human-hours. If you're a morning person, at least, to which I am. 5 AM is my sweet spot, my perfect wake up time. It's early enough to be able to catch the sunrise no matter what time of year. It also gives me a few - if not several - hours of quiet time, as Jesse (and all my lovers) are night owls and can sleep till noon.

I'm one of those people who cannot STAND noise when I'm waking up. Not music. Not movies. Not youtube videos. Not anything. The sound of rain that we use to sleep is as much as I can handle. Otherwise, I need near dead silence. This seems to be a rarer trait, as almost everyone I know turns on the computer/tv/etc and starts playing sound within minutes of waking up. Me? An hour of silence, bare minimum, and two hours preferred.

They say it helps wake them up and intellectually, I can totally see that. But for me, it crashes into my concentration like a four ton truck into a pane of glass. It makes me feel fragmented, somehow, and unable to focus for the rest of the morning.

I just realized how often I use the word "somehow." Maybe I should shake that up and hit the thesaurus sometime. It is, after all, one of a writer's best friends. I use it, but it usually takes a while to notice that I'm reusing the same word over and over again. Writers - very good at taking in details. Sometimes terrible at recognizing word patterns in our own writing. Maybe that's just people in general.

I've been trying meditative and grounding exercises the last couple of days. Small things, such as focusing on my breathing and repeating a mantra when I'm trying to sleep ("stay still, stay silent"), or by doing the "5 things I can see, 4 things I can touch/etc" thing. I'm not even sure what I'm hoping it'll help, except that everyone else says it helps, so I'm gonna give it a whirl and see what the fuss is about.

It's definitely going to take practice - it turns out my mind is noisy as fuck and requires constant, active re-steering to the meditative exercise. But I read somewhere that this is common - most people's heads are louder than they think and so it just takes practice.

I also tried some active positive thinking yesterday. I didn't get very far because I see very little that's positive about all this. I did come up with two things, though.

(1) I am eating the healthiest I've ever eaten. While my body doesn't always think so (or at least the way it RESPONDS), I've given up fast food and many pre-packaged foods. Even if my body decides to throw a tantrum over half a turkey and avocado sandwich (which it did recently, for a full six hours afterwards), I'm STILL eating better than before.

Cutting out fast food itself is astounding, as I'd been eating it several times a week before I got sick. I mean, I love fast food. Love it. Loooooove it. I am totally, typically, completely American in that sense. I nursed on the teat of McDonald's Golden Arches and could not ever seem to get enough of it. I was boorishly in love with it. So even if my body thinks that a handful of chips is a bad idea, I still KNOW, FOR SURE, that I am eating healthier, if nothing else through not eating fast food.

(2) I've lost weight. I was 140 when this all started, now I'm down to 130. The edema and loose skin of ballooning up to nearly 200 pounds breaks the smoothness of my abdomen, but hey, not a soul besides Jesse will be privy to seeing it.

Never get between a woman and her vanity, no matter how petty or small it may seem. I feel skinnier, and by god, as a typical American, that feels pretty damn good.

But that's all I've been able to come up with. I think the idea isn't to find positive things ABOUT the disease, but positive things AROUND it or BECAUSE of it. And so far, those two are the only things I can see as being even remotely "positive".

I guess if you count "frighteningly aware of your own mortality", that makes a third thing to be grateful for, kinda, sorta. But idk - I kinda liked the whole "ignorance is bliss" thing when it came to my body. That won't work anymore. Ignoring this will not make it go away and it won't kill time while I'm waiting to heal.

I once broke my foot - my ankle AND several top bones. (Found that out years later at an urgent care clinic where they had to take an xray.) I ace-bandaged the shit out of it and kept working my housekeeping job, which involved three stories, a heavy and ancient vacuum cleaner, and no elevator. I just ignored it until it went away. Wasn't easy. Wasn't fun. But I had no health insurance and didn't want to go to the ER. And everything healed mostly right. There's an occasional tremor on my ankle, but overall, ignoring it worked.

Ignoring lupus and kidney failure will not work. That's what got me to the point of this being as bad as it is. I'd had health insurance for months before I went to get checked out, even for a basic physical. It was only when I started to lose my hair that I made an appointment. (Like I said, never get between a woman and her vanity.) If I'd gotten in sooner, I'd still have lupus, but I might have prevented the kidney failure.

Shoulda coulda woulda, right? My goal today is to not fight my symptoms, but to simply accept them and try not to attach moral judgement to them. So if I lay down for a six hour nap, I'm not "lazy", I am letting my body "recuperate." If I throw up three times today, I am not "weak or badly doing my diet", I am instead letting my body tell me when it's had enough of something. If I pass out on the way to the bathroom (because by god, everyone's got to pee sometime), I'm not "pushing myself too hard". I am instead simply experiencing withdrawal symptoms of Prednisone, which is a set of symptoms I have no control over, and thus cannot take any blame for.

Stuff like that. Far, far easier said than done. But practice. Practice, practice, practice. It'll sink in eventually.
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Pat said something profound yesterday, something that helps explain the hopelessness and frustration I've been living daily under.

"In the last six months, you've lost your health, your job, your income, and the identity you were beginning to build with that. You've also lost your insurance, Disability is going to take another few months, and you are in complete limbo with your Medicare. You've physically lost the ability to do many of the things you used to enjoy. Teressa, you've been through a lot of loss lately, and all without a significant improvement in any of those areas."

I thought about that for a minute. And I replied - "Y'know, I hadn't thought of it like that. I mean, as a total picture of what I no longer have". It's fine and dandy to be grateful for what you do have - and few hold onto that motto as much as the poor do - but what I've lost is a landslide, a huge portion of my life - both future and present.

I said - "I need a win, Patrick. Just one thing that goes right - and I mean REALLY right." I need a day where I don't measure "good" by "how many times I throw up." I need a day where I get an answer of YES somewhere. I need something to go my way.

I need a win. I need some kind of victory that I don't have to fight tooth and nail for.

It's amazing what others can see that we can't - and the seemingly exponential avalanche is something I hadn't quite processed yet. Not in full. It makes all of this make just a little more sense.

I'm not only angry and resentful about all this, but grieving as well. That's not a word I'd put to this before. Even just the word "grieving" gives me a little more compassion towards myself. You don't beat up a person for grieving, you don't morally judge someone for grieving, and you definitely don't tell a person who is grieving that life will never get better.

I'm grieving, so I should try my best to follow those rules myself.

I'd also told Pat that I've given up on the whole God thing. I looked and felt and thought and couldn't find anything that felt like home or that felt comforting. I was worried that made me horribly cynical. Pat said it is okay if I don't find what I'm looking for in spirituality. Lots of people don't, he said, and they get along just fine.

The closest to what I've decided on this is to reclassify myself as agnostic rather than atheist. I still don't believe in anything Divine or spiritually connective, but hey, I could be wrong. I'm wrong all the time. May as well give myself some wiggle room on this, too.

Oi. I already threw up once this morning. It ended with dry heaving and stomach bile, which means I've got to get both more water and some food in me, if for no other reason than to have something TO throw up. (The relief is so much more when you're puking food instead of stomach bile.) But being nauseas, I don't WANT to eat anything.

Oh well. This is my life right now and somewhere, somehow, I've got accept it. Every symptom makes me furious and depressed and that eats up so much energy. Sometimes fighting means surrendering, though it seems unwise to surrender to the fact that I'm gonna puke, I'm gonna fall down, and I'm gonna be mostly incapacitated no matter what. But I'm getting really, really tired of fighting my body.

Maybe the rest is up to my mind. I don't know. My brain's been pretty shaky lately and doesn't feel like such a safe place to be in. But maybe that's where the real fighting comes in. Not fighting nausea or vertigo, but fighting the negative thoughts that come with it all.

I honestly don't know which is harder right now - what my body does to me or what my mind does to me. They're both fucked up something awful lately. But if there's one thing 20 years of therapy has taught me is that I can unlearn and relearn new ways of thinking.

I can't unlearn, undo, or re-think my body to prime health. But with enough practice, I can do so with my mind. I've done it before with a myriad of traumas and destructive behaviors. I can do it again. So that's where the battle is going to start taking place.

Maybe that's how I'll find my win.
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Cassie said something really funny the other day about a guy she knows. She said "And that's a dude I COULD take home to mama, which means I need to stay away from him. Cracked me up. For all of her faults, she is still the funniest person I know. She has this wonderful mix of vulgarity and wit that is always somehow perfectly timed.

She's not a nerd, either, but has the ability to seamlessly move through nerd circles with ease. Same with...well, any scene. She's quick to learn social cues and quick to implement them. It's a trait that I admire, as I often get stuck in my labels.

I get confused and often don't know what "the rules" are for any given situation. Talking to people at a party has different rules than, say, at a doctor's office. Or being really new to a group of people and letting the Overshare off its leash to run completely amok. So I'll wind up saying or doing something accidental but wildly inappropriate.

Cassie does not and hasn't ever seemed to have that problem. That is a very good thing about her. She also curses more than me (and that's an achievement - I've got the mouth of a sailor on shore leave), to which I also find endearing and funny.

One thing I always found strange about cursing - or rather, the euphemisms people USE to curse. Things like "GOD bless America!" or "Dang it!". If you have this omnipotent creature that know what everything about you, knows everything you WILL do, from conception to well-after death, then wouldn't that same creature be aware of your intentions as well? And if the intentions are to angrily curse at something, it seems that covering that up with some sweet phrase is a form of denial - and useless, since God knows what you're really thinking.

Unless you have kids or often the elderly. I do my best to not curse around either of those two groups. Kids are too quick to pick up on the words and too slow to understand context. The elderly...well, that's just a sign of respect. They grew up in a time where flashing your knees was enough to condemn and ostracize you as a whore. Having lived through that bullshit, I see no reason to further upset them by cursing around them.

I used to use the word "retarded" a lot to describe things I was frustrated with. Jesse's exwife has a special needs kid and was less than happy with my usage of the words. At some point, he asked me to find another word. My first instinct was to push against this - after all, it's just a word, right, and the LITERAL definition to be slower. I was defensive and quick to defend my word choice.

And I caught myself midway through my first sentence shutting up about the whole thing. I thought to myself "This is a really dumb argument you're about to get into." What does it matter to me if I start using another word? It's one word out of trillions that I could use. Is this really worth fighting over? Is this really worth alienating Jesse AND be an asshole?

Pick your battles - and in this case, I decided Jesse was right and I had no business to continue to act like an asshole about it. If I'm spitting mad, the word occasionally does slip out, but overall, I've been able change the habit of using the word "retarded."

Argh. I can't tell if I'm nauseas or hungry. I know I'm thirsty - I've already obliterated a 32 ounce bottle of water. I guess I'll make some French toast. If it does turn out to be nausea, it'll at least give me something TO throw up.
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I figured out part of the passing out deal. Two days ago we stepped the Prednisone from 10 mgs to 5 mgs. I'm on this for another week and then off altogether. So withdrawal symptoms are still clear and present, one of them being vertigo and weakness. With how long I've been on it, it could take another week after I'm at zero, no less, before it all goes away.

But I am sleeping later. My average wake up time is now 4:30 AM. This I can live with. Sometimes symptoms still wake me up (such as at about 1 this morning, in which I rolled out of bed, dashed to the bathroom and nearly passed out while vomiting. THAT was fun.) On one hand and then on the other.

I'll have to get that list for you, Disgruntled Girl. I have leaflets and stuff from various nutritionists, but it's all a scatter of just food names. No real idea on how to put it all together.

I guzzled as much water as my stomach could take yesterday and intend to do the same today, as I'm still experiencing the whole "Whoa there, sit down rightthisfuckingsecond, no matter where you are, or you're going to fall down and hit your head on something." Because that would be my luck. It wouldn't be a graceful fall. I'd chip a tooth or give myself a concussion or something.

I was never a graceful person to begin with. Clumsy and completely lacking the ability to judge where I am in regards to my surroundings. Thanks to the prolific MPDG, though, most people thought it was cute. Lupus? Took me from "adorkable" clumsy to just plain clumsy.

It's amplified a lot of the things that I could get away with before, but now cannot. Whereas I used to brood (all mysterious like), now I'm simply grim. Whereas death as a casual topic of conversation used to be a whimsically morbid trait, now it bothers others, since I was actually close to dying.

Not that I want to be a MPDG. Not anymore. She's too exhausting a trope to even try to pull off. But there were silly traits and quirks I had that are either gone or extremely hard to get to these days. Things that I liked about myself.

Jesse has finally acquiesced to the idea that this disease has changed me, personality wise, and will continue to do so. He no longer goes on about me returning to the bouncy ball of frantic energy that I was when we met. As the months roll by, and I settle more and more into this disease, he says he now sees what I've been seeing - that parts of me inside, perhaps vital and integral parts, even - are changing. For better? Doesn't feel like it. For worse? That seems more like it.

Time will tell. Ten years from now I'll re-read this and see things that I am completely blind to now, while in the middle of all this. Ten years from now I'll re-read this and hear nuances that I'm currently unable to hear, thanks to the insanely high decibel volume my body is screaming at. Ten years from now. As time passes.

I'm counting on it.
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What a morning.

I woke up, took three steps, and dropped to my knees. Why did I drop to my knees? Because I passed out. Vision darkening, center of gravity dissolving, panting, passed out. I'd spent all day in bed yesterday, eating very little, so I figured if I could get some food in me, I'd be okay.

I crawled to the bathroom, crawled to the kitchen, stood up and attempted some instant oatmeal. I got as far as putting hot water in it before I fell down again. Fuck it, I thought, I'll just eat it on the kitchen floor. Reaching up to the counter to grab it, even though I was sitting down, still made me see stars.

I then crawled to the couch to lay down and see if the food would help. It did, but I realized I needed MORE food to stabilize. So I crawled BACK into the kitchen, sat down in front of the fridge, and ate some cold rice. That has helped some more. So, soon, hopefully I can walk to kitchen and heat the rice up in the microwave (which requires standing and/or stretching high, which equals passing out.)

No nausea, though. The passing out thing is scary but nausea is so much worse. That tells you the state of my body, which is also scary. I had wanted to do some grocery shopping today, but I don't trust my body not to pass out going 70 mph on a soon to be quite populated highway.

I used to almost enjoy playing the game of chicken with my body. To stretch the physical and mental stress to see which gives out first - me or my body. Now I know without fail which would fall first (my body), and this disease has me realize that without a functioning body, it's really, really hard to have a functioning mind.

I just hope the dizziness doesn't stick around all day. Grocery shopping DOES have to be done and Jesse often can't do it by himself. I can help him if I go, so long as getting the door doesn't involve me winding up on the floor.
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I wake up feeling groggy, as if my meds had not properly metabolized in the night. I got four hours of sleep initially and went back down later for another 3 hours. That does not seem to be enough today, so I will go back to sleep.

I always think "What a waste" to sleep all day, so many days. But it's Sunday, no calls or visits, the house is picked up, no need to leave the house. Hell, I even managed a load of laundry. (This is particularly heroic, as it involves taking the stairs three times, which is enough to make me feel like passing out some days.) Still, a good day to waste if there was one.

Lupus and I have been circling each other like a boxing match. Its gloves are heavier, lined with lead. Mine are just regular gloves and do no good. I don't want to fight it. Most times it's a matter of dodging the blows. We keep fine-tuning and fine-tuning my diet and the symptoms still remain large enough to fuck with my physical functions.

Part of this is that there are no perfect foods. Example: Watermelon, my favorite go-to, the one thing I will eat all the time, every time, and feel satisfied with. Well, it's low in phosphates but sky high in potassium. So that's out. Most meat is the same way, as are carbs, as are condiments. It drives Jesse insane.

I tell him that as there is no food outside of a few fruits and veggies, there will have to be some give and take. Sometimes we'll have to accept that some foods will have a trade off. More sodium, less phosphates with one food. More dairy but less sodium with another. It's damn near impossible to find a food that is dairy free, sodium free, phosphate free, un-enriched, low protein, and potassium free at all at once. Even the number of fruits and vegetables is severely restricted, and I will not live on green beans and grapes alone.

It's beyond maddening. Jesse suggests that I try to live off rice and the five or so fruits I can have forever, often right before he heats up a pizza. Or that I could live off skinned, baked chicken forever.

I roll my eyes, reiterate the ways that is actually terribly impractical, and he eats his delicious chili or pizza or tacos and I wander off, annoyed to no end.

On the other hand, mentally and emotionally, I feel alright. So far today,at least. That could change at a moment's notice. But for this moment, I'm okay inside. Not great but not horrible, either. I guess that's a good start.
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You know you live in poverty when you see a roach crawling across your kitchen counter and your first thought is "Meh. At least it's not in my food." Or my coffee pot. With the last roach epidemic, I could visibly the miserable creatures crawling underneath the clear, plastic "ON" switch. The roach episodes come and go, usually when we get a new neighbor. We trap and bait and squish the roaches we can see, but it doesn't make much of a dent in their population. Those fuckers breed fast.

Jesse asked, in discussion about relief from our disorders, what things I like to do. Things that uplift me. I thought about it. I thought about it. And I thought about it even more.

Sad ending: There were very few things that I enjoy with impunity and abandon. Eating WAS one of them. Now that I'm on the renal diet, food has become far less exciting. I used to love window shopping. Now it's heads or tails on whether I can even get to the car before the fatigue hits. Playing with my kitties still remains something I can do and enjoy. Painting my nails with complex schemes is also something that I enjoy and continue to do.

Writing, of course, is up there, though sometimes it's something I DON'T enjoy but continue to do nonethless. But overall, the list was very small. I don't think that says good things about me. Like, I should have a hobby. Adults should be expansive and I don't seem to be that.

I'm mostly decent at self-care, and the listening to inspiring speeches on Youtube idea was BRILLIANT, but self-care does not translate into a hobby. Things like knitting or cooking or painting require too much patience (good call, Cinema). Photography has expensive start up costs. I have no interest in learning to play a musical instrument (nor any way to obtain one should the mood strike). I'm not very artsy or crafty. I haven't the energy to volunteer. So I guess the trick is to just think of things I LIKE, overall, and see if there's anything I can do with that.

I think today is going to be a good day. The nausea is there, but waaaaay back in the distance. The trade off is shortness of breath, vertigo, and nearly passing out, but hey, I'll take that over nausea any fucking day.

The deal right now isn't about managing symptoms. It's about learning what symptoms you can put up with and which ones you can't. I can handle fainting couches and smelling salts. I can't handle hanging over the toilet for hours, my stomach swirling like a maelstrom at sea.

All I gotta do is remind myself that I don't need to stand up so fast. Just stand up slowly. Steadily. This is not a race, Teressa. You can avoid at least some of the dizziness if you just rise slowly.
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when you feel the only semi-productive relief is to re-read a 107 page thread about Dashcon, which was staged three years ago, just to find something to laugh at. And SJW's are never NOT funny.

Like you say, Michael: Every day brings a new chance - or at least a new chance to make fun of something.
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JESSE: Can you hand me the tape? It's on my desk.

ME: *peering at the desk, which is a minefield of paper and a million odds and ends* Uhm, where is the tape?

JESSE: Hang on, I'll get it.

ME: Thank you. Your desk is like a woman's purse - deep and impenetrable.
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Our heater broke so we've resorted to the old "turn on the oven and open it just a crack" trick. I can now see why in the olden days (before central heating and cooling) having an oven was a MUST in a home.

As Jesse's Cpap picks up smells and funnels it right through the tubing into his face, I smoke outside when he is asleep. While he is a smoker, the Cpap somehow condenses the smell and makes it stronger - too strong to sleep. The temperatures are registering in the negatives right now. He's lucky I understand how important sleep is, because me and -4 degrees DO NOT get along.

And I'd forgotten about the planetary tilt, Bart! That even when facing the sun, some parts will get more or less heat from the sun because it's not an even, face-on exposure. Also, when were you in Ecuador? That sounds fascinating!

Also, for the random: I hate smoldering cigarettes. I'm a smoker, a heavy smoker at that, but when people don't fully stub out their cigarette it drives me up the wall. Like, do you know just how bad ashtray fires smell?

Or people who toss their cigarettes on the ground right next to the designated ashtray. I cannot stand that level of careless laziness. DUDE, STOP MAKING US SMOKERS LOOK BAD. There's enough stigma around being a smoker as is. We don't need some lazy asshole making it worse for the rest of us.

It's sad - you can go to a bar and see some idiot drink himself nearly incapacitated and then climb into a car and kill someone. But it's the person who just wants a cigarette with their beer that gets the most ire.

I don't know about you, but I'd MUCH prefer someone whose had 6 cigarettes get behind the wheel than someone whose had six shots and gets behind the wheel.

Yes, I get that cigarette smoke is smelly. But I've yet to hear even ONE case of some dude beating his wife because he smokes a lot or someone shooting some poor gas station clerk for a pack of cigarettes. (Maybe for money AND cigarettes, but never cigarettes alone.)

I try to be polite. I smoke well past the 10 feet from any door that businesses require. If there's a child or an elderly person on oxygen, I move and smoke somewhere far from them. If someone politely asks me to move, for whatever reason, I'm more than happy to. Sometimes they are not polite, or are compelled to give the "smoking is bad" speech. This annoys me and I will not move. But overall, there's no reason to be a dick with your smoking, therefore, there's no reason to be a dick about someone else's smoking.

Well, I was going to do some dishes and maybe even some laundry this morning, but body says "No." *sigh* Somedays it seems like that's the only word my body knows.
quirkytizzy: (Default)
Michael, years ago you wrote a post saying that the reason you hated winter wasn't the cold. It was because winter is so goddamn inconvenient. There's so much work to bundling up all of the necessary layers and then having to UNbundle every time you walk back into your front door. It's that you have to spend 10 minutes scraping ice off your car instead of just getting in and driving. It's that driving takes more time due to increment weather.

I think snow and even ice can be beautiful. I kinda love it, even - IF I don't have to go out in it. If I have to go out, suddenly winter really does become the most inconvenient in the world.

Yesterday I wondered why we HAVE seasons. Like, how did the planet evolve in such a manner that we have four very distinctive weather patterns? WHY did it develop that? Are seasons a relatively "new" thing? (As in, did dinosaurs have to deal with four seasons?) What is gained from progressing in the cyclical manner that our weather patterns do? I mean, it's not like the planet has lupus. It doesn't need to "rest" in between seasons, thus giving us winter.

Silly questions that I will Google here shortly.

And Oleg - you're right. Trying to get OUT of a psych ward can be hella hard. I had to resort to basic "be bitchy and pester" mode just to get the nurses to page the damn doctor. The argument over my release went something like this:

ME: (cheerful and calm at this point) I'd like to leave. I understand that this is AMA'ing (Against Medical Advice) but I'm more than happy to sign any waivers or forms that you have.

* (If you're AMA'ing,you have to sign a form that says you will not sue the hospital if something bad happens after your release.)

NURSE: We can't do that. You can only be released when we decide you are safe enough and only the doctor can decide that.

ME: You have nothing to hold me here. You have no legal bindings keeping me in this building, on this floor, or in this hospital. You do not have the legal power to detain me.

NURSE: (pauses) I'm not going to speak to that point. You have to wait for your doctor. We cannot let you out.

ME: (at this point, I am severely agitated and begin to get bitchy) The doctor ALSO has no legal right to detain me unless he petitions the courts to commit me involuntarily. He has not petitioned the courts, therefore, I should be able to just fucking leave.

NURSE: We can't do anything for you. You have to stay.

The conversation went around a few circles, all pretty much a repeat of what was said above. At the end of it, I wandered off, cursing and mumbling under my breath the whole way.

I get why wards do not want people just checking in and then right out. It is their missive to protect their patients, especially from themselves. But patients have rights, too, and the ability to determine IF they want treatment at that time and place should be theirs.

Eventually, the doctor was paged. It took a few hours, but I understand doctors are very busy. He and the social worker on my case called for a family support check. They wanted to talk to someone close to me to make sure I wasn't going to fly off the edge and grab a high powered rifle and just start picking off random pedestrians (or myself) from a bell tower.

I get the logic behind this. It's always good to have a second opinion, especially from someone who knows the sick party. But at that moment it just meant one more thing between me and walking out those damn doors.

But Jesse came up and reassured them that I have no secret intentions on becoming a murderous sniper. It was finally, finally decided that I could go home. I could not believe the amount of work it took to just get passed a single locked door. The whole thing was so exhausting in and of itself that I crashed for a nap immediately after getting home.

What a mess that was.
quirkytizzy: (Default)
I....slept. Honest to god, real sleep. Easily nearly 11 hours. I was up briefly at 2:30 but went down shortly thereafter - and didn't wake up until 9:30 AM. I wasn't up and down every hour, I didn't roll around trying to get comfortable. I just...slept.

While I still feel tired (lupus oh lupus), I also feel like a million bucks. At least in my head, which is SUCH A GOOD THING OMG.

Thank you all so much for your encouragement and hugs. It's so easy for me to get stuck in this merry-go-round of "I'm fucked up because I do fucked up things and that makes me fucked up." And nothing good ever comes of that. It becomes this circular trap, a tired piece rhetoric that disorients and traps me. And I do it to myself, which on an intellectual level, is almost fascinating. It's amazing the things we can do to ourselves. One would think the self-preservation instinct would include thoughts and actions that uplift us, not that drag us down.

It's also amazing what other people can pull us out of - and that includes you guys. Thank you. Sometimes the fight does get tiresome - a lot of the times it gets tiresome. Having cheerleaders, people who KNOW things, people who have been through similar if not the same things is invaluable.

One good thing that came of the psych ward stay: The admitting nurse found my glasses, which had been missing for months. It was in the side pocket of my purse. The pocket that I never use, never bother to check. As expected, psych wards have to comb through every item you bring onto the ward, lest you bring in something you can hurt yourself with. Well, a thorough check of my purse turned up my glasses. I was shocked and thrilled. Amazing they hadn't been broken, as I tend to fling my purse every which way when I get home.

Hm. Glasses are a single item, a one-item noun, but they are referred to in the plural manner. Much like the word "pants".

I dun get it.
quirkytizzy: (Default)
So yesterday I did something really dumb. Then I did "the right thing"", to which I shortly regretted and then spent the next 15 hours trying to reverse.

I cut myself. Again. It was 5:30 AM. No one was awake to talk to. All of the usual thoughts were there, sans one new one: I figured out a way to kill myself that wouldn't leave a mess. It wasn't ideal (drowning is slow), but the fact that my mind settled on something, even if it was "just a thought" scared me.

I looked at my arms, dripping blood. I didn't take the time to wrap the wounds, didn't want to bloody up any of my coats, and walked into the 20 degree morning, destination Emergency Room. I drove carefully, trying not to bleed on the steering wheel. They took me in. A few hours later, I had a bed on the psychiatric unit of the hospital, the sixth floor. The one that has only staff elevators. The one that has visiting hours.

I have a problem. I have a problem with cutting and I have to admit it now. Once is an anomaly. Twice is a pattern. This is now an addiction I have to restart the work on.

I'm a cutter. I have to say it out loud. I have to say it because while two months ago that wasn't true, as of today, it is.

So going to the ER was the right thing to do. I know that. I wasn't prepared for how unprepared medically the psychiatric unit is. The lupus issue was not at all taken into consideration, which upset me greatly, since it feels like that's the root cause of all of this. The way I cannot carry my body, the way it beats at me every second that I'm awake, the way it tosses weights the size of planets onto my mind.

It wasn't long before I was agitated and pushing for release. This psych unit caters to mostly addicts and chronic depressives. There was no one-on-one counseling, only group meetings which focused heavily on religion. This sort of set up can be a lifesaver for others.

It is not for me.

I was released, with the full knowledge that if I go back, they aren't going to let me out easily. With the rest and stopgap stay in the psych ward, the suicidal thoughts returned to their normal place, which is far, far back in my mind.

I don't know when they'll go away forever. Probably when my physical condition improves. Or if this is a new crack in my psyche, one that once it's been opened, it'll always remain as something I could trip on. I don't know.

I'm home. I'm safe. And I'm a cutter. This isn't brave to admit it. It's just necessary.

Icon For Hire -"But it bothers me, our scars are currency by which we're measured
Like let the record show who let it slip and who held it together.

I let it slip.

Icon For Hire - "And I'm fighting so hard to come out of the dark
Trying to turn off the night, finally let in the light
Trying to make my misery just a piece of my history
A little less victim, a little more victory

I know sometimes it looks like I'm not trying, but I really am. I really, really am. I don't want to forever to be a victim to myself, be it my body or my mind.

Just a little more victory. That's all I need.
quirkytizzy: (Default)
So it turns out the Prednisone was masking joint and muscle aches. I'd say this is a new symptom (and it is, compared to six months ago), but it's likely that without the full Prednisone, I am now feeling it. I spent all day in bed yesterday with joints and muscles that felt stretched and pushed together at the same time.

When I get a doctor, that will need to be addressed.

I woke up at the prerequisite 1 AM, though would have slept longer had it not been for the wave of nausea that woke me up. If it ain't one thing, it's another. I guess nothing's a perfect fix.

It was still a relatively "good" day, in that I only experienced the tiniest of nausea. Looks like all of the everybody was right in that dairy causes nausea, as my queasy-free days are the days I indulge the least in milk. I eat plenty of dairy products and it turns out the straight milk on top of it taxes my kidneys (and thus the entire rest of the system) way too much.

It just took me doing it over and over again before it dawned on me that other people just may be right. Here's to us, the fools that never listen, who traipse dangerously unconcerned through good advice given. I guess it took me being miserable enough for enough length of time before I was willing to try it.

That's me in a nutshell. It's like...it's not enough for me to put my hand on the stove just once to learn it burns. I have to do it three or four times, just to be sure, and by the end of it, my hand's a cinder and other people are looking at me like I'm crazy.

Which I am. Crazy, I mean. But I shouldn't be crazy like THAT.

So I open the fridge, scan the shelves, and think to myself "MMMmmmm. Milk. Cold. Creamy. Comforting....for about 30 minutes before you spend the next several hours begging God to just let you throw up or die." Attaching the bad thought to the good thought is difficult, but it seems to be working.

It's amazing to me how fast my body will punish itself if I go too far out of bounds. Often inside the hour. Be it one end or another, I find myself glued to the toilet, or falling asleep at some truly inopportune time, or otherwise feeling as if I might fall over in a full-body haze.

Lupus is a harsh mistress. Her and her whip do not kindly tolerate disobedience.

I told Jesse yesterday that if my muscle and joint achiness is anywhere near what he deals with everyday, I am bowled over. It was all I could do walk to the bathroom without feeling like I was being pummeled by tiny hammers. He has chronic pain and it gets bad, sometimes to where he uses a cane, or has body twitches and spasms. I can't imagine living under anything worse than this for an extended period of time. But he does and it awes me.

It seems unfair sometimes. Things that the rest of the world needs MORE of (potassium, dairy, protein, phosphates, etc) are all things I need LESS of. The rest of the world needs to build a stronger immune system. I need to weaken mine. That causes its own problems. I gotta be weak enough to not generate extra bad cells, but strong enough to not die from the average cold, leading to an never-ending, never well-defined, teeter-totter mix of boosters and suppressants.

Prednisone is an immune booster, which contradicts my Cellcept, which is an immune suppressant, and yet somehow I'm supposed to be on both. It makes no sense to me. It is literally correcting - if not erasing entirely - one medicine for the other. And I HATE using medication to treat other medications.

Time to try and go back to sleep. Not because I'M tired, mind you. My mind is bright eyed and bushy tailed. No, it's because my meds haven't had enough time to metabolize and so I'm stuck feeling groggy.

I am so at my body's mercy. I am so much her bitch that it's not even funny.
quirkytizzy: (Default)
Yesterday was a good day, in that I only threw up once and the nausea stayed in the background after that. Yeah, I know, kinda sad that the "good" days are measured by how often I throw up, but that's the one symptom that brings me to my knees. I had plenty of fatigue, even vertigo and nearly passing out a few times, but those I can handle. Those are wrestled down with some rest and an ice pack at worst. The nausea? Kicks my ass everytime.

I can tell the severity of a flare (which is what I think I've been in for the last few weeks) through my hair and nails. I'm losing hair again and 8 out of 10 nails have broken. I am also now feeling joint achiness. It doesn't hurt, per say, but I am very aware of them in an uncomfortable manner. More lupus shit. What else would I talk about? )


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