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Romanticizing it, Gonzo? Absolutely. I don't know what else to when the Crazy is such a player in the front of my mind. I have to find a way to make it real, because if it's real, then I can talk to it. I have a way of communicating with it. I can't ignore it. I can't just tell it go away and watch it slink away into the wings of the stage.

I have to make theater of it, because if I'm dancing with it, the dance eventually ends. It bows and eventually something else to dance with steps up to my outstretched hands.

I've been trying to do what the psych says and that's staggering my meds so my heart pressure doesn't drop too low. In the middle of it, I like to take long, hot as my skin take without melting baths. I smoke cigarettes like a luxury hot tub in the bath. It gets me tipsy. I walk a little off center. I feel good.

Jesse admonishes me to keep the baths short, the water cooler. I can understand where it'd be disturbing to watch your partner climb out of the water as if she'd just taken six shots of vodka. But I get defensive.

"Everyone else in the world gets to have fun with their chemicals! You drink! You smoke weed! You get to have fun with it! Why can't I? I'm not stupid enough to drive in these states. I don't wander downstairs and get into dangerous or uncomfortable situations with strangers. I stagger around the apartment a bit and then crawl into bed."

I don't drink. I don't do illicit chemicals. I don't have wild sex with every hottie I see from the balcony. I take care of my appointments, my meetings, getting us food, getting the bills paid, all of 95% of 100% of the time. I'm pretty goddamn responsible. So I like to get a little high from hot water?

Count yourself lucky, because my favorite other way to get high is to bleed, and we're a few weeks out from that. Which would you prefer? Someone who weaves into the closet door because the bathtub was too hot, or someone who left the bathtub a mess of blood?

Cuz like it or not, sometimes those are the only two choices you get. I'm learning more everyday, but what's ingrained is written deep and will take a long time to be penned over.

I'm not normal, so I don't get to have fun like normal people. And a few prescribed pills, taken exactly as the professional tells me and a bubble bath is coming off pretty easy when I look out at a world that makes fools of themselves with chemicals.

So I'm crazy? I like to get a little dizzy when I can. I'm not fucked up.

I'm fucking human.
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Never have. But I did write this entry, of which was about who would be the true love of my life.

The one who found this video to beyond beautiful, beyond haunting, and understood it. Poets of the Falls, a Finnish band with a gorgeous talent for twisting the morbid with the pretty.

A few months later, I met Jesse. I showed him this video.

He wept, so moved by it he was. He saw and he understood. The creepy and derelict in his own psyche echoed mine, and I knew it because he found that video to be one of the most bewitching things he had ever seen.

So I've never written a love poem? It turns out that was unnecessary anyways, because we both looked at something and saw the same thing - parts of ourselves in the other.

That's far grander than any love poem I could ever pen.
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It is a little after 5 AM. I have been up every hour, on the hour, for the last seven hours. With luck, the next time I lay down will take. If it does, I'll likely sleep 12 hours. If it doesn't, I'll be unable to speak coherently for the exhaustion.

It's not always "the devil you know." I know both of these devils well. It's simply the devil that gets you first.

Fate is my best frenemy )

Again, I am superstitious, not religious.

I came upon something much darker a couple of days ago and having been to trying to process it. To put it where it belongs, to where it makes a full picture instead of an unwinding quilt of threads shredding themselves this way and that way.

My suicide attempt in March was not as random an impulse as I've wanted to believe it was. It was not as much a casual slip-up of thoughts as I've wanted OTHERS to believe. It's so hard to admit this. Everyone can forgive a single, drug hazed mistake (to which with all the drugs I was prescribed, I WAS in a drug-hazed state), but the more the look back, the more I realize the drugs wasn't what did me in.

It was me that nearly did me. Me, thoughts, and fears, and strangely enough, my resentment. In March, about a week before I decided to make a dinner meal out of an entire bottle's worth of sleeping meds, I wrote this on my Lupus Support Group.

"A month ago, my blood pressure dropped fatally low. It had done so in my sleep. My boyfriend, noting how pale, cold, and unresponsive I'd become in the night, had called 911 and was told that had he not done that, I would have **died**. It put a rightful scare in me. I was also surprised to find that through that scare and the gratitude at being saved was twisted a small feeling of resentment.

Things had been going so poorly - and still continue to be poor, eight months after diagnosis and endless hospital admissions (I've spent well over two months total sitting in hospital beds). Technically things are "improving", in that my kidney numbers and nausea symptoms are improving greatly, but it has not translated into a Happy, Healthy Quirkytizzy yet.

I am tired of feeling so unwell, so consumed by feelings of anger, confusion, and sorrow. I would have considered it a blessing to pass away in my sleep, even as young as I am at 35.

And while I am grateful - terrified and grateful - to have gotten a literal second chance at life, a part of me resents my boyfriend for having saved my life. Saved my life for what? For years more of this endless treatment where the cures are worse than the disease? For decades more of dealing with people rolling their eyes when I have to spend yet ANOTHER day in bed, all day?

I didn't know how to deal with this resentment. I am so grateful to be alive, but at the same time, a small part of me wishes he had not called 911. At least I would have gone peacefully.

Has anyone ever felt anything like this? I understand just how selfish it is for me to feel this way, but I feel what I feel. In true honesty, I would not have wanted to die.

But if I'm being honest, a part of me would have welcomed it.
Am I alone in this feeling????

That was such a huge warning flag that I'd unknowingly raised. My own journals, littered over and over with phrases like "I don't care anymore, there's never going to be a good day, why am I bothering to live like this?" were also signs.

Never having before been suicidal myself, I didn't stop to think about these being things that were placing myself in imminent danger. I thought that these were just normal parts of the grieving process.

I was so ashamed at feeling anything but gratitude for Jesse saving my life. I struggled because what good person feels upset when someone you love loves you so much that they LITERALLY save your feel life?

I'm now thinking it's not so much that it makes me a good person or a bad person, just a person in desperate pain.

I mean, really, how DO you tell your loved one that you want to be be with them for the rest of their lives, but goddamnit, couldn't you have just left me die in peace"? The two thoughts do not mix and all that happens is that hurt and rejected feelings ripple endlessly through the lake once that stone is hurled into the waters.

I suppose the progress is this: I no longer resentment him for saving my life Like, at all, not even a little bit. Given time, treatment, and a maddeningly slow but noticeable uptick in health, being alive is becoming at least a little more attractive. Without him, I literally, as in would have been buried almost six months ago, would not have had that chance.

It all just so clearly outlines the idea that suicide attempts don't just "happen." There are warning signs. Personal and often tailored to a person specifically. A person can go weeks without writing so much as a FB post, but if I go more than a week without posting on LJ, we know something is wrong. Your mileage may vary, but it's still a car, and we're still all stuck riding in them.

At least now a days I have a much better idea of what requires immediate attention and what doesn't.
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If it is too good to be true, it usually is.

I'd spent the day before in an ecstatic bliss of peace, of joy, of contentment...only to wake up this morning flattened like Wiley Coyote against a wall. I hadn't been experiencing true happiness. I had been rapid cycling.

Intrusive and disturbing thoughts, but without plans or will to act on them, propelled Jesse to suggest that I go speak to my therapist to see if further action (such as intake) was needed. I am relieved that her opinion was that inpatient was not needed, only a boost in my psychiatry appointment to get my meds straightened out.

Then okay, another round of the med-go-round it is to be. It's always a process of trial and error, my body and mind paying for the game of Wheel of Fortune every time. I will try at least three medications, every time, only to find something that mostly works, all while experiencing the bevy of side effects that all brain medications come triple-wrapped in.

1:30 AM. An hour that I am altogether far too familiar with. I skipped my dose of Seroquel tonight, as I'd slept 10 hours today and do not wish to add another 10 hours straight upon it.

The lack of my presence in our daily life greatly affects Jesse. He feels adrift, often as if he is living alone. Given that I spend so much time unconscious under the blankets, it is a fair feeling for him to experience.

I do not know what to do to solve it. When I become so tired that I stumble against walls just trying to get to the bathroom, rest is the only thing I can do. And I become this tired every goddamn day.

We are in a Catch-22. He needs me awake. My body needs me asleep. Neither of us gets what we really want, which is an active relationship. It's amazing how little two people can see each other even if they live together in the same room.

I don't know how to give Jesse what he needs. I don't even know how to give my body what it needs. If the body would simply even out, then being with Jesse in my entirety would be easy.

My body has other ideas, though, and they are never good ones.

I know these troubles are not uncommon when one partner falls terribly ill. But knowing it's not uncommon does not seem to ease it. Couples counseling would be an idea, except the problem is my physical illness - something no psychological professional has training enough to curb.

We cuddle more. When I can, perhaps once a week, I try to at least peripherally participate in a sex life between us. As much time as I am able to give, I spend my waking moments in conversation with him.

But that is not necessarily living a life together as two people in love with each other. And I know he is in love, and I know I am in love.

Sometimes they say that love is not enough. I refuse to let that be the case here. Surely, somewhere, someway, someday, progress will be made to make this a relationship again, instead of some waiting game while we pray my disease learns to take a backseat to me actually living my life. A life that includes Jesse where he should be, by my side and not whiling away days on end on the computer because I am asleep.
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GOOD NEWS: Cutting the Valium to its prescribed dosage has left me with my memory intact (if not waking me up every hour on the hours). But hey, that's preferable to motherfucking blackouts. This is especially relieving, as when Jesse and I tried to compare notes between when he left and when the post window was opened, neither of us could remember if I'd started writing BEFORE or AFTER the Valium.

I would much, much rather it be a product of a simple, overdone chemical cocktail. If it wasn't the meds, than that points to a problem in my brain chemistry.

I don't have many talents in this world. Reading and writing are among the few that can be counted on and lauded for. If I were to lose that to some kind of mental short-circut in the brain itself, it would absolutely decimate me. My intellect is really all I have of myself.

I can't have that taken away. I just can't.

What scared me most about that are things like, what if I'd gotten into the car and drove somewhere in the blackout? As Jesse had the car keys, that was impossible. And there is absolutely NO alcohol in the house for me to chug down in order to facilitate a black out. But it's not unheard of for people to wander outside of their houses in such a state, drunk and medicated or not. I do NOT want to be that person. I'd quickly checked my phone to make sure I hadn't black-out texted someone, to which thankfully I didn't.

With every strange new symptom, it hammers Jesse. He's always had issues with anxiety and panic attacks, but as the months and shoes and anvils just keep dropping on us, it's become a nearly daily problem for him. It'd be arrogant of me to suggest it's ALL because of me and my illness, but I sure as hell know it doesn't help.

I have an ever increasing empathy of anxiety attacks, now experiencing them for the first time in my life. I've only had ONE panic attack in my life and it was so terrifying that it was immobilizing. (I had this idea that stepping out of my home would crash a plane onto my head. And this was BEFORE the movie Donnie Darko came out.) It took hours of a phone call from another addict to squeeze me out of the house, on the phone for the 30 minute drive to work, and another 10 minutes of the call just to get OUT of my car to walk INTO work. It was horrifying.

For Jesse to go through both daily...my heart aches for him.

For reasons along the lines of "everybody deserves a second chance", the "no homo, bro" dude Jesse and I know have had a few more visits with him. I am finding myself becoming annoyed with every word that drops out of his mouth, to where even the sound of his voice agitates me. I will do my best to stay either away or in bed when he visits.

He had done something silly and pocketed a pack of smokes while out shopping one day. It could have been an honest mistake (I've done that before), but his explanation was that Satan had been whispering in his ear, and that he was worried he'd go to hell for it.

I was like, Uh, dude, Satan had nothing to do with that. That's all on you, Buddy. And why the hell are talking about yourself like that, like you're a sinner and are going to hell? It was just a pack of cigarettes. Just don't make a habit of it."

I'll go to the ends of the earth distracting security guards and cameras to help people steal food and medicine. A pack of smokes (or Magic Cards in the ex's case)? Hell no.

On the religious side, he really comes down too hard on himself. I point that out on occasion, but I guess you can't save 40 years of religious, echo-chamber, circle jerk religious training in just a few conversation.

I mean, seriously. I wish I had the option of blaming every fuck up I've had on demonic whispers tempting me to do stupid shit. But stuff like that, it's all on me. Impulsive as it, my actions are my own.

At least this man is unintennionaly driving home a lesson that I've needed to learn for like, oh, my entire life. He is obbessed about his life before, about the people in his life who have let him go, and about how nothing NOW could ever compare to the life he had behind him.

It plainly makes me see how pathetic **I** sound when I get stuck in that same, broody state. I'm now realizing the benefits of having to unglue my ass that's permanently planted in my past. Okay, so I can't do what I used to.

But what, in the future, CAN I do? Or even in the present? At the very least, I can at least try to accept my life as it is today, instead of being drowned by in the life that WAS.

There's been one other thing on my mind: David. David and our behavioral similarities. For years, I'd felt so vindicated that I never indulged in the behaviors he did, such as cutting and suicide ideation (if not threats themselves.) And yet, over the last four months, I have done exactly those things.

Granted, for entirely different reasons, if nothing else due to the fact that my disease can and has nearly killed me on several occasions - wheras his is a lack of wanting to seek effective treatment. I try to hold onto that as a imperative difference between us.

The most I can come up with is that his self-destructive behaviors come from a deep-seated hatred of himself. All those - and continuing years - filled with texts and conversations about how much he loathed himself for being unable (in his eyes) to function.

I don't hate myself. I hate what I DO sometimes. I hate what my body IS sometimes. And I have plenty of times when my entire self-worth is dragged into the blistering, uncomfortable light to be examined and dissected.

But self-hatred? No. I have a fair-to-middling self-esteem. I understand that self-compassion is often the only way to solving my issues, even if it is damn hard to apply that concept some days.

My life is flawed. My body is flawed. My psyche is flawed.

But me by myself? I'm not flawed. I'm just one messy human being trying to find her way home.
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For a house with two writers, pens can be awfully difficult to find. But I have four cats, meaning they are probably under the couch, the bed, the refrigerator, or some such other inaccessible place.

Londo Mollari struggling with the same issue, except with space roaches )

I stumbled onto a small solution to a small problem that was so obvious that I could have smacked myself for not realizing it sooner. Sometimes Jesse's and I's sleep schedules WILL match up, and we find ourselves waking up within an hour or two of each other. I often find what he watches when he gets up to be jarring. Loud music. Talk shows with laugh tracks. Vines videos. Things that rattle me so early in the morning.

And then I realized we have headphones. While I can't turn it up loud enough to drown out his noise (that'd be too much for me), I can at least put on things that I find soothing or comfortable to help cancel out what he listens to.

Granted, somedays this will mean having the headphones on almost all day, because a lot of what he watches is jarring to me. But hey, he's not the only one who is allowed to listen to what he wants to, all day, every day.

I don't think I'll ever understand the person who has to have SOMETHING on from the literal moment they get up to the moment they go to sleep (which is damn near everyone I know). Hell, the entire first week after I broke up with David, I didn't listen to a single song, a single tv show, play a single video game. That entire week was spent in pure silence.

I used to say that people were just probably afraid of silence - and maybe some are. But that's a pretentious statement for me to make, as if I am elevated above those who "need noise". It just may be that they don't NEED the silence.

Maybe their heads are already peacefully quiet and thus they don't need the extra quiet time like I do.

But not too much quiet time, I'm finding out. It's taken four trips to the psych wards, but I've discovered a trigger, a major one, to the destructive urges. Too much alone time, too much alone time in a quiet, dark apartment. When working, I had 2 or 3 hours of alone time a day and that was enough. With insomnia, that stretches out into 5, 6, or 7 hours of alone time in a dark and cold apartment.

So the goal is to work on finding the right sleeping schedule (ahahaha, I mean the right sleeping meds) to give me no more than 3 hours of alone time. I've also gotten the green light from Jesse to turn on a light in the morning to help cope with this trigger.

It's a studio apartment, so I've always tried to keep it dark when he sleeps. (There's no bedroom or living room for me to shut a door between him and I.) But if a light helps, he says, then it helps. So I turn on a light and the darkness - both literal and metaphorically - edges just a little further back into the shadows.

Weirdly enough, this is a trigger only in the mornings. I can handle vast amounts of alone time in the afternoons or evenings and come out the other side just fine. It's just in the mornings where it begins to take me to dangerous places.

Trigger work in general is another concept I must return to. It's been a long, long time since I've had to dive into that whole mess. One of the Group Therapists in the psych ward said that new trauma can create new triggers or else strengthen older triggers, something that I'd not really considered before.

Some of the triggers can be modified through environment, such as turning on lights in the morning or developing a sleep schedule that doesn't leave me dangling five hours before sunrise. Sometimes I have to learn how to let the housekeeping go for a couple of days. (This is EXCEPTIONALLY difficult for me, as an unkempt house can, by itself, lead to a full blown melt-down.) Or I have to grit my teeth and let Jesse do chores in what I consider "the wrong way" and instead be grateful that the chores are getting done at all. These are triggers that can be worked on pro-actively.

Others cannot and must simply be dealt with as they come up. I'm still sorting out which triggers are which. But I'm definitely recognizing their role into what cassette tape starts playing in my head and what to do to jam up the whole process altogether.

(And ahahaha, I said "cassette tape". Date yerself much, Teressa? AAHAHAHAHA!)

And JohnnyD, I found something last night. Something in one of my journals from 1999. I'm going to take a picture of it and write about it here soon, hopefully today. It's about a few things, but in the end, it was me begging you to believe in me and you telling me that you did.

We may have been young, but it saved my life then, and every time I come across it, it saves my life again.
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I managed a bath three days ago. It's time for another one. Here's hoping I can find it within myself to do so today.

And yep, Matrixx, that would be one thing if Jesse had planted a big, sloppy kiss on our friend, or if he had made flirty remarks to our friend. But our friend is obviously, outright straight. We respect that. No sexual remarks, either directly or indirectly, have ever such occurred, so the outbreak of homophobia towards us was extremely jarring. And saddening, as it hurt both of our feelings greatly.

Cinema, I am considering posting a letter to him explaining our separation. Whether or not it falls on deaf ears, well...that remains up to our friend. It will at least explain OUR silence.

And Radium, yeah, it still shocks me to run into people who have such archaic and (in the end) self-absorbed thoughts, as if gay or bisexual men are sexual predators who will lure people into a comfortable trust before they lay waste to someone's butthole. Being the Midwest, I shouldn't be surprised. And yet, time and time again, I am.

We are nearing our yearly run of re-watching Babylon 5. I have watched it at least once a year for the last 12 years. I always find something new to relate to, every time. I've waffled over the years, finding myself relating to G'kar and Londo to varying degrees at various times in my life.

I've decided that I don't want to be either of them.

Both of them were ruled by anger, grave calamities, and acceptance in difficult ways. G'kar, of course, comes to a much happier ending (though I couldn't handle waves of religious acolytes pounding at my door. I can barely handle maintenance knocking on my door.) Londo does find peace at the end, in the final books that deal with the Centauri Prime arc. But it is a peace that is like G'kar's, won only through a lifetime of loss and years of well-intended but ill-made decisions.

That is one of the beauties of science fiction and fantasy. It allows to ask and answer questions about our humanity that can only be done so when dealing with non-human characters.

That show, for being over 20 years old now, is still illuminating for me.

I don't know what else to write. I am so tired. I got over 12 hours of sleep yesterday and it still wasn't enough. I remember the last time I felt truly rested - and it took five solid days of sleep to get there. Even then, the "restful" feeling lasted a single day and then WHAMMO, I was back to being utterly exhausted no matter what. Five straight days of sleep is not something I can afford very often, if rarely at all.

The words "chronic fatigue" does not even begin to do justice to what this phenomenon really does to a person.
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Jesse's and I's mutual friend have made a few blunders that are making us reconsider our friendship with him. See, I surround myself with liberal people and sometimes forget that I am living smack dab in "The Bible Belt", where bigotry - overt, covert, and everything in between - is deeply seeded within the mind of the average Midwest citizen.

He's made casual remarks of how he "wished that he hadn't watched that documentary on how Planned Parenthood tortures its aborted fetuses" (I was too tired to fact-check his ass during the conversation so the comments went mostly ignored.) A few racist comments that are along the line of "I'm not racist BUT-". There's been a few homophobic comments that he doesn't get how gay men would want to have sex when lesbians are just "like, so hot, man!"

That homophobia finally entered our personal realm. Last week, Jesse had said that perhaps a few years down the line, we could be roommates.

After that, sheer silence from our friend. As the days went on without any further contact, Jesse and I began to worry.

This man has serious life-threatening health issues, along with deep depression, that could easily murder him. Multiple calls and texts conveying our concern went ignored. Yesterday I finally texted him that I was going to send a Wellness Check in for him. (Basically where the police come in to make sure there's not a corpse sitting in the living room.)

It was then that our friend hunted me down and explained the silence. The roommate conversation had left him worried that Jesse had been hitting on him and he just didn't know how to respond.

I was like, DUDE. SERIOUSLY?! We frantically worry that you're fucking DEAD and you don't respond because you assume Jesse's going to want to nail you at some point??!! I didn't say that, of course. One thing my mother did teach me well was how to be polite. But as the last day has passed, I find myself more and more irritated with our friend's comment.

Jesse was immediately, extremely irritated with the relayed conversation, stating that he is too old for this bullshit. That he is tired of explaining himself, over and over again, to various "no homo, bro" sorts of people.

I'm getting too old for this shit, too. And too old to fight with people whom (either out of lack of exposure or willful ignorance) find it acceptable to not only believe these things, but to spew them out.

I asked Pat yesterday about the whole "tolerating differences between friends" idea. I asked him "Are THESE the kinds of differences you're supposed to tolerate, or is it more like 'I want to go to Burger King and my friend wants to go to McDonald's' sort of differences?"

The latter, Pat said. The latter sorts of things are what you tolerate, NOT remarks that convey disgust at some of your own personal beliefs. Especially, especially when they start interfering with your own personal lives, as it did with Jesse and I.

I understand this is part of the struggle when finding friends in such a conservative part of the country. Our friend was smart enough to say that he "probably misread it", but then followed that with "but I didn't know what to say".

The correct answer would have been a text that said "I'm going through some personal shit and just need some alone time. Btw, I'm also not dead."

It's disappointing. It gets to where I just want to point blank ask new people about their social views and where they stand on "sensitive issues" such as race, religion, and gay rights. It gets to where I don't want to expend the energy of establishing a friendship (which is a FUCKTON of work for adults in general, and especially people like Jesse and I) just to get blindsided by a big-ass dose of bigotry.

I think the mutual conclusion between Jesse and I is a fade-out of this person's life. I can handle some conservatism in a friend. Pro-choice but would never have an abortion yourself? Acceptable difference. Being completely straight yourself, but are okay with the fact that gay men exist and have sex lives? Acceptable. Not had a lot of ethnic friends and are confused by their culture? Being as this is the whitest of all major American cities, that is also somewhat acceptable.

Refusing to let your friends know if you're alive or dead because you're worried about some dude hitting on you?

NOT acceptable.
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I sometimes want to make fun of people who don't know the basics of cooking. Two people I know in particular, both of whom are 45 years old. One, Jesse's ex-roommate, who only recently learned how to brown meat. Another, a mutual friend of Jesse's and I's, who only recently learned a bowl of cereal can, indeed, be used as a full meal anytime during the day.

Both of these men are learning how to cook in exactly the same way I did: by finding themselves living alone for the first time in their lives.

This is the situation I found myself in at the age of 32 when I broke up with David. I had no idea how to do anything BUT brown meat and have cereal for dinner. I lived off cereal and pizza for the first entire three months after the breakup. I did eventually come to the conclusion that a grown woman should be able to make a meal that involves more than two ingredients.

But even now, at 35, I'm only a cook un novice. I can work magic with tortilla dishes, make a wicked cheeseburger pie, and know how to get creative with tuna. Anything else? I leave it untouched, terrified and annoyed that I'll likely burn it, undercook it, not realize its gone bad, ruin dishes with terrible combinations of spices, etc etc.

Still, the gaps in learning are sometimes dumbfounding. Jesse's ex-roommate, ever the annoying weasley man, once exclaimed "I had no idea cooking could save money! I'm only spending $140 a week on fast food now!"

Dude, if you're spending 140 dollars a week on fast food - and that is a REDUCTION of money you've been spending on fast food - you're doing something wrong. This is the same guy who has said to Jesse more than once and deadpan, (after 20 YEARS of them living together) that I'm going to die and he will not be able to help Jesse at all.

The man pays no bills but his own, has absolutely NO debt, pays the same rent and utilities that we do, has a functional vehicle that he's not pouring money into, makes over 30 thousand a year, and has an empty living room that could easily fit a single air mattress for a friend to sleep in for a while. (At least if the man bothered to take out his trash once in a while, which he does not.)

And somehow he can't "help" his "best friend" of 20 fucking years, refusing Jesse even a place to stay for a week should something horrible happen to me. All this WHILE ALSO feeling constantly compelled to tell Jesse that I will die soon and that Jesse will be alone.

Seriously, what a dick. There are just not enough dicks in the world to describe how dickish this man is.

David also had a moment that utterly befuddled me. The man had been cooking for MONTHS at the time, making steaks and burgers and chili and whatnot. He did not know how to cook before dating me but discovered he liked to cook and dove into the art enthusiastically. One dinner, however, he asked me how to boil water.

I was like, uhhhhh whaaat? Even I had mastered the art of boiling water by my 30's. I still don't get how he had gotten to be a good cook without knowing how to boil water. I'm also still grateful that he cooked for me, faithfully and daily, every day for the entire 5 years we were together.

Still a dick, but less of a dick. Concerning cooking and pep talks, at least. David never said anything like what Jesse's "friend" said and NEVER would say something like that to anyone, abusive and dickish as he was.

In the end, mocking them would be mocking MYSELF. (Except for Jesse's ex-roommate. He's a jerk and I'll mock him long and loud.) And while I try to stick to the saying of "If you're not laughing at yourself, you're missing out on the biggest joke in the world", there's only so much self-deprecation I'm willing to dance in.

The other friend is less afraid of learning how to cook, I think, and simply more afraid of living alone. That I can understand, having felt that terror for years, even while in a relationship where no amount of food could make up for the abuse dished out. Jesse and I, having both lived (and am currently living) well below the poverty line many, many times in our lives, give him resources, tips, and offers to accompany me to various food pantries.

Though he, too, is befuddled on how to live of the $800 a month AFTER all his bills are paid, which befuddles me, because jesus, if you have 800 left a month left over AFTER aaaalll your obligations are taken care of (bills, medication, rent, utilities, debts, taking care of others, etc)....I guess that just shows how poor I've been in my life.

He is much, much kinder to Jesse than his ex-roommate, however, and that goes a great way in our patience with him. Jesse will cook and offer dinner to this friend and our friend is happy to give away any extra food he has to us. I think the poor, or those who have had loved ones in poverty, understand the power of sharing more than anyone else.

(Not to say that poverty makes one noble. It doesn't. It makes us bitter and hungry. But there is the occasional gratitude - both given and taken - to be learned in poverty.)

I'd planned on writing something funnier, but at least this post isn't all lupus bitching and whining. So, here's to cereal for dinner, Hamburger Helper with well-browned hamburger, and tortillas.
quirkytizzy: (Default)
Let's get the serious post out of the way and maybe later I'll be able to talk about something less...lupusy.

Jesse and I will sometimes go round and round about how far my recovery will take me. About how much of my previous life I'll be able to return to, about how much energy I will or won't have in the years to come. He easily understands the "incurable" part of this disease. It is the "degenerative" part that he seems most troubled by.

As the months go on and I learn more about the disease and how it affects my own body, I can now track symptoms back to my early 20's, if not even a few years earlier. Granted, my kidneys hadn't failed yet, so they were merely tiny licks of what I have today, but they were there.

Add 20 years of no health insurance, no medical care, and an adoration for anything with the words "BACON AND EXTRA MAYO" and, well, 20 some odd years later, you have exploding kidneys. Yadda yadda yadda. All shit we know by now.

Jesse, Pat, and all of my doctors are amazed that my body managed over 15 years with some sort of active(ish) lupus before it all fell apart. They call it an astounding display of sheer willpower.

I don't use the word "willpower." I just state that I'm a stubborn fucking bitch and let it go at that.

But what this means is that on occasion, people mistake my past ability to live with lupus as a legitimate way to measure how well I should be able to live with it NOW (or ten years down the line.) I argue that it simply hadn't progressed to this level, therefore it was easier before and naturally will be harder now.

I also didn't know that this shit wasn't normal. I assumed EVERYONE slapped themselves repeatedly in the face to stay awake at 2 in the afternoon. I assumed EVERYONE spent days and days on end in bed with migraines. I assumed EVERYONE had strange bouts of body pain. Once I found out it wasn't normal? That it was actually HARMING me more than it was HARDENING me?

It suddenly paints those past decades of simply "fighting through it" as dangerous and ignorant. Over 20 years of "just pushing through it" is a huge part of what brought me here TODAY, into such a sorry state of body and mind. I damn near drove myself into the ground - six feet under - that way.

Why would anyone want me to repeat those coping behaviors??? Do they not see that what I was doing was literally killing me, and I am now in even WORSE physical conditions to be trying the same things NOW?

The measuring stick has changed. I don't like it anymore than anyone else does. I'd dare say that I dislike it THE MOST out of anyone. It is incredibly frustrating when people slap that old stick across my palms and want me to use it.

I think Jesse wants to hope. Hope is such a dangerous thing. I dare not place too much weight or importance on its shoulders. Call me curmudgeonly. Call me pessimistic, a nihilist, a negative thinker, whatever. But if this disease is degenerative (and it is) and I must not push my body to the breaking point (like I did), then I cannot just work and push and pull and "hope" it will all sort itself out.

Things are improving. While lower than ever before in my life, the emotional baseline is stabilizing. Despite record-setting setbacks, my kidneys are also chugging along at incredible rates of recovery, 70% operational now. (Or at least were as of a month ago.) Things could go wrong at the drop of a hat, but I am in far better a state than I was eight months ago when the shoe dropped onto my head like an anvil.

Maybe that's luck, or willpower, or blessed, science or stubborn. Whatever it is, though, it will never make this go away entirely. To suggest that I should or WILL be able to act as if it will go away is nothing short of dangerous.

And right now, the most dangerous thing I'm willing to indulge in is fried shrimp. Four now. Maybe another eight months down the line, I can have eight. That's not hope, but it's something.
quirkytizzy: (Default)
I am shocked to find that the potassium blocker prescribed does, actually, help keep my blood pressure even. It's a POTASSIUM blocker. Like milk and dairy shit. No idea it could help your heart work better. So go the mysteries of science.

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

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

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

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

I like metaphors and analogies.

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

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

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

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

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

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

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

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

Well, wearisome as it might be, here's to "just maybe."
quirkytizzy: (Default)
After sleeping away 80% of yesterday, and another 100% of the previous day, I woke up this morning planning on going right back to bed. And then I realized, with quite a shock...that there was no pain.

No migraine. No nausea. No arm pain. Joint pain, of course, but nominal. (On a scale of 1-10, 2 or 3 is quite manageable.) I stepped outside for my morning cigarette, marveling at the possibilities of a day without pain.

I'd managed a herculean feat yesterday. I went to see a friend. A good friend, who has never missed a hospital visit, who is the most non-judgmental friend I have ever met, and who I've managed to ignore completely throughout this entire mess of pain and misery. It was beyond healing and made the exhaustion upon returning home worth it.

That's thing - the exhaustion is there no matter what. If I stay home, if I go out, if I do nothing more than sleep all day and wake up only to have a cigarette. I often push myself through it for the very basics, but to do something worth it....that's nothing short of a miracle for me.

The exhaustion will come shortly. It always does, even on the days I wake up feeling well. But there's chores I've ignored for a week that I finally feel up to doing. And with luck, there will be enough to spend some time with Jesse, who has been feeling extremely ignored.

He often resents that I spend extra spoons on cleaning, but the truth is, there are chores that are rarely possible, if ever physically possible, for him to do. They must be done. So I do them, the cost of those chores tumbling spoons to the ground in a clanking mess.

We had a ridiculous argument yesterday. But I realized this morning that he is as welcome to his moments of frustration and sorrow just as I am. We have become so used to the similarities of our diseases that sometimes we forget that they are, in fact, different diseases. His sometimes allows him, much more often than I, to push through his chronic fatigue.

Mine does not, and certainly not at this phase of recovery.

I got snarkier than I should have, throwing around sarcastically phrased statements such as "That's why FATIGUE is listed as the SECOND major symptom of lupus. Aaaaand what's that first part to that phrase...hmmm...could it possibly be....CHRONIC? That's like telling me my joint pain will go away. IT WON'T. That's the first symptom of lupus. And the second...whaaat was that phrase again? Did I mention...hmmm...FATIGUE?"

It did neither of us good and I wake up feeling guilty for having been so sarcastic. But as I regularly throw temper tantrums about my disease, it seems fair that he, too, should be allowed to throw the odd tantrum or two about my disease as well.

It's rare that he expresses these feelings, instead being a caretaker and a lover of extremely attentive and sympathetic proportions. I can't expect him to be Superman all of the time.

Now off to scrub out the catboxes, to which dear lord, need it desperately. I think our air is now comprised more of ammonia molecules than actual oxygen.
quirkytizzy: (Default)
I woke at 9:30 AM. Much later than usual, but I'd been hoping to stretch it to noon. I'd gone to bed terribly late and about an hour after, Jesse became violently ill. So I gathered a blanket, a bottle of cold water, and some crackers and sat with him on the floor, wastebasket in hand should he throw up, until he felt better enough to crawl back into bed.

I must have gone back to bed around 4 AM. Sleep, as it ebbs and wanes, is such an unpredictable creature. Tempestuous and mercurial.

It is another day of wondering why the hell I write. Over the last two years, my journal has become far less of a discussion and more a scream into the void. Nothing but temper tantrum after temper tantrum.

I've lost energy to directly reply to comments, which isolates me even further, as I know that public journaling requires giving direct replies to those who are willing to speak to me.

I grieve that and can only hope, as time goes on, I can go back to what my LJ once was: A real conversation between all of us.

I also feel bad for my kitties. I often toss them off of me (most of them are pretty cuddly) because my joints can't handle even the slightest extra pressure. Even when my joints CAN, there's often GI or skin sensitivities to consider. Their favorite place to lie down is on my chest or stomach. So as I'm wishing for their contact, I'm pushing them towards my legs to lay down there, petting them the whole way.

Cats, despite their reputation, are not nuanced creatures. Talk about giving them mixed messages. Yeeeesh.

I've run out of Hydrocodone to deal with the migraine pain. And as the medical field is now paranoid of turning patients into junkies, I can't get more until my official dr appointment, days away. The blood pressure meds do drive the pain downward - significantly - but it doesn't take the pain away enough to be functional. I can also take only so many of the blood pressure meds and am SOOO NOT WILLING to take the chance of messing more with them. I have no one around me that either has extra Hydros or would be willing to give me extra Hydros.

A friend of Jesse's gave me a few pills called Propoxyphene. It's opiate based. I don't do so well on opiates. They usually make me horribly ill. But I'm willing to do almost anything to relieve the pain right now. The FDA had discontinued the med due to heart arrhythmia being a possible side efffect. I'm not worried. Every goddamn medication I'm on lists "heart arrhythmia" as a possible side effect. Hell, Tylenol lists that a possible side affect.

It seems to be taking care of the pain. I've also no need to violently hurl up stomach bile, as is usually the case with opiates. But just the sheer NUMBER of pills I take a day does a number on my stomach. If things are going well, perfectly, absolutely, well, then the pills just settle in and I'm fine.

Throw off any other part of my system, though, and I'm unable to do anything but moan about in bed. This body is fragile. So fragile and far more connected to its various operating systems than I ever knew.

God, if I could go back in time and bitchsmack myself for every time I joked that I was immortal. And maybe I AM immortal (so far, so good), but it's the kind of immortal that Meryl Streep and Goldie Hawn had in the movie "Death Becomes Her". Where being immortal does not necessarily include a functional body to BE immortal IN.

And really, if your body parts are falling off, what's the point of being immortal anyways?

Bitch, moan, complain, complain. It's a sure enough sign that I'm at least clear enough TO be able to bitch about things. But I get tired of it just as much as anyone else around me does.

But I have no filter and even if I did, would never use it on LJ. This is the place for bitching. As much as my writing is for others, it's still a continuance of what I've always done: write for myself, to untangle it all, to keep record of it all, to try and find some box I can at least temporarily place all the bullshit in.

Thank you, mother, for the burning of all my journals over 20 years ago. You burning an effigy of me helped me realize I was someone important enough to even BUILD an effigy to burn. It's twisted. It was nothing short of heartbreaking and enraging. It still stings today.

But goddamnit, it proved to me that I should keep writing, no matter what that writing is about.


Apr. 1st, 2017 05:31 pm
quirkytizzy: (Default)
* Jesse has kept true to my boundaries all these years. One of them, one the most important ones, is that I do not let people I've never met before into my home. And I usually prefer several meetings between unknown people before they are allowed here.

It frustrated him greatly at first. It likely still does. But he has always respected it. I am so grateful for that.

* My dreams keep throwing me back to the psych ward. Either I'm back in and arguing with staff about getting permission to leave for a few hours a day for a part time job, or I'm sharing hallucinations with other patients, or I'm stuck in never-ending hallways with no doors.

Makes total sense. It's still unnerving.

* The possibility of strokes had not occurred to me, Matrix. But the first hospitalization showed that I'd been smack dab in the middle of a mini-stroke for days. That is something for me to keep on the front burner, to watch out for. Thank you for bringing that up.

* Sometimes writing feels the most useless endeavor I have ever attempted. As if I've wasted the decades of practice instead of building something "normal". I know this is an extremely common feeling amongst writers. Artists in general, I would think.

But there's little else I have a talent for and NOTHING else I have trained myself so hard in. Not feeling well contributes to that and clashes with my need to write. There's no saying you can't learn new things, but it often feels like I'm just writing myself in circles.

* I'm actually glad I don't own a PS4 and have Mass Effect: Andromeda. It's something that I would wind up being so frustrated with. I've been eager and excited to play this game for YEARS now. Ridiculous frothing at the mouth kind of eager.

As ill as I've been, I wouldn't be able to play it right now. Writing on a computer still requires sunglasses in a dark room. Even with that, it still makes the room feel spinney. There's no way I could handle the twisting and turning that combat and level-running involves.

I watch others play video games (for unfathomable reasons, that's extremely comforting for me). But I'm often relegated to just listening to it, as watching it makes me nauseas enough to vomit.

Damn you, Bioware. Couldn't you have had the sense to put off the next release of my favorite game series until I stopped being sick?

* My father was able to get me a smart phone and put me on his plan. It's been so long since I've had a smartphone (well over a year now) that I practically forget how to use it. All the apps I once thought as of as dire necessity now seem extraneous. But it's unlimited text and call and save us so much money on phone cards. (Jesse still has a pay-by-the-minute burner phone).

* There's more to write. Always is. But even as I managed sleep for five hours earlier today, the nausea is overwhelming, even after eating what seems like a million pills for it. I don't know what else to do, so I'm going to lay back down and see if that helps.

It may or may not help. I'll have to put on my sleep mask to completely darken my vision. But at least I can take off my sunglasses.


Mar. 30th, 2017 05:02 pm
quirkytizzy: (Default)
ME: Oh man, I messed up on word tenses in my last post. Damnit. I always get that mixed up. The are/is context, I mean.

JESSE: What about it?

ME: Well, "are" is something you use in the current tense. "Is" can also be used current tense, but there are times when it's best used for PAST tenses, too. It's like how I sometimes have problems with my singular nouns to plural verbs. Basically, I've been mixing up my prepositions.

JESSE: I love having a girl who knows these things, but you do know that after about ten seconds of that explanation, you started to sound like the adults on a Charlie Brown movie?

ME: *laughing a bit* I'm of the school of thought that you can't break the rules without first knowing what the rules ARE.

This isn't completely true, of course. Due to a horrific home situation, Jesse had to drop out of High School and get his GED years later. He has no formal education in writing and yet, through not knowing the rules, it gives him this...creative freedom that others might not have.

He'd be in good company. Many of the greats didn't have a good education, if one at all.

Still, it was a relief to find that you CAN start a sentence with the word "And". You're just told not to in early education because teenagers often abuse the "And". This turns a three page paper into a Nietzschean, nearly one run-on sentence nightmare.

(I haate Nietzsche. I mean, I LOATHE that man. Not for his ideas, as pretentious as they were. I hate him for his writing, his habit of turning a ten word thought into a 500 word paragraph. The man may as well have fucking married the semi-colon and gotten on with it.)

Get to college and find out that YES, you CAN start a sentence with the word "And", so long as you do it right. Then they tell you how to do it right and WHAMMO, you can say "And" anytime you want to, even if it's at the beginning of a sentence.

Allow me a little literary rage towards some bad college teachers I've had.

* Fuck you, Mr. Brannon - the singular "they" DOES EXIST. Writing "his or her" in every sentence that deals with multiple people of unknown or unassumed genders is CLUNKY AS SHIT. And if you're not concerned about how clunky your writing is, you're not a good writer.

* Seriously whaaaat, Criminal Justice professor? You want FULL URL LINKS included in our papers? When was the last time you looked at an updated copy of MLA standards? Like, fucking 1997??!!!

* I know you are a fully educated woman, Miss English Professor at Brown Mackie. But goddamnit, full phrases such as 'majestic ability' and 'statue of beauty' ARE NOT synonyms.

Classes like those, I just sat in silence, did what they said, and allowed my ego about the English language to stiffen when I stepped out of the classroom. Being a writer, a good writer, is one of the world's most attractive things to me. Makes sense, given how sacred I consider the art.

So yeah, wordplay. Almost as important as foreplay.

Naaaah. They're on the same level.
quirkytizzy: (Default)
So something is happening with penetrative sex that has not ever happened before. I'm not quite sure what to do about it. What's happening, you ask? Well...it hurts. The vaginal walls and muscles are NOT STRETCHING the way they should when being penetrated.

As in, either I somehow got tighter than a virgin or Jesse's dick grew another inch around and longer.

I'd thought "Okay, well, you haven't had sex in, like, a year. So you probably just need a little more lube than usual." I ALWAYS use lube, because a 35 year old body just doesn't produce lubrication the same way a 20 year old body does. Basic science, no moral judgement there.

(Well, no moral judgement except to the assholes who have been, in my life, OFFENDED that I used lube. As if the sight of their cock should somehow override biology. Fuck those dudes. Lube rules.)

Anyways, it turns out the extra lube, though, is not helping. Sliding down, even the simple act of penetration hurts enough to make me wince - and not in that good way.

I don't think vaginas can tighten up that much and Jesse's dick has not gotten bigger. So what is happening and how can I make sex more comfortable for myself? It's not lack of foreplay, because after all these years of body-boundaries, I REFUSE to have penetrative sex unless I really, really want to.

So if I'm climbing aboard the Cock Train, it means that I am ready and raring to go, engines gunning at full speed.

Except my body, by sending pain signals from my brain to my twat, disagrees. Why?

I'm going to bring this up with my doctor (it's possible this is medicine side effect), but I also thought you guys might have some ideas on what's going on and how to fix this.

Sex has never hurt like this before, and I'm doing all the usual things people say to do when it hurts. Use lube. Have more foreplay. Try different positions. It still hurts.

And it sucks, because I really want to start having regular sex again. Ideas? Suggestions? Similar experiences? A happy, warm speculum? Something?
quirkytizzy: (Default)
JESSE: *talking about a story idea set in a Lovecraftian like universe* But SHE - the love interest - is a cosmic being in this story.

ME: I hope with fewer tentacles?
quirkytizzy: (Default)
The Grim Reaper is missing.

Okay, the light cast on the wall off the apartment across the way that LOOKS like The Grim Reaper is missing.The porch light is off, therefore no pareidolia for my mind to design what is simply a wall reflecting a light. It's plenty creepy, though. Hooded, arms outstretched, nearly translucent at the bottom, as if he were rising from the grave.

It makes me a little anxious, even knowing how silly it is to be afraid of what is literally a shadow. He is not there this morning, though, and I am relieved.

Jesse speaks in his sleep, the sound muffled by his CPAP, but definitely there. Tossing and turning as well. He's been having nightmares lately. I wish I could shove my hand into his brain and pull out all the messy parts that plague him, that keep him from sleeping.

But I'm pretty sure that would kill him and murder is pretty illegal. Also messy. And generally immoral. All things that make murder a disastrous plan for getting rid of things.

Still, I wish I could ease his mind. I know what it is to be tortured by your own mind while asleep. I wish I could stop his torture in his sleep.
quirkytizzy: (Default)
But what I didn't know until last night was that laughter can also be a powerful aphrodisiac.

After a month resisting watching anything creepy, I finally felt comfortable enough to watch a show Jesse had said I would love. "The Santa Clarita Diet", a show about an undead woman and her supportive family. (I'm into funny zombie shows lately.) It's morbid. It's bloody. It's sarcastic and shriek inducing at all levels.

And it was FUCKING HILARIOUS. The humor is all gallows humor, all quick retorts, sarcasm, and the hilarity of normal people getting thrown into very ABnormal situations. I loved it. That's MY kind of humor! I watched 5 episodes in a row, which is damn near unheard of.

And so I laughed. Laughed so hard that I thought I might crack my rib open again. And about halfway through, I realized that I was feeling so good that I wanted to bone Jesse. That I had THE ENERGY to bone Jesse. This is the first time in eight months that the desire to have sex and the ENERGY to have sex have lined up in unison.

So I did. I even initiated! That alone is a sign of wildly good health returning. I am not broken! I DO have a sex drive. I just haven't had the energy to do anything with it.

And then I watched something side-splittingly hilarious (in this case, concerning the broken rib, perhaps literally) and realized that maybe, just maybe, I need to do more things that make me laugh. More things that make me feel delight.

It was such a wonderful return to not only sexual activity, but in finding humor and joy in such a terribly morbid show. That feels like me.

The day had even started in an equally wonderful place, as I had woken up with enough energy to do six loads of laundry, an hour of errand running, and regular cleaning. I even got the KITCHEN, which is usually Jesse's zone to take care of.

(He's been in a lot of pain these days, so when I can, I try to make his day a little easier. Do the dishes. Set up the coffee pot so all he has to do to get fresh coffee is to flip the ON switch. Stuff like that.)

One thing I am learning with the lupus fatigue is that when you have the spoons, you damn well better bust your ass and get as much done as you can possibly get done - because there is no guarantee you will have that kind of energy tomorrow, or the day after, or even for WEEKS after.

It can lead to pushing too hard, which I realize today will be spent "making up" for all that activity with some serious bed rest, but goddamn, it was SO FUCKING WORTH IT.

I'm coming back. It's still a long road ahead, with plenty of bad days and angry entries and assuredly more hospital stays to feed the fire of frustration. But last night proved I am not broken.

I'm sick.

Not irreparable.
quirkytizzy: (Default)
(Attempting to distract myself, Jesse and I play Rayman Legends, a two player video game. The game allows you to revive a dead player by catching up to the other character.)

JESSE: Crap, I'm dead!

ME: It's okay, I'll wait and get you back in the game!

JESSE: No! Just keep going! Just finish the level!

ME: This ain't no Saving Private Ryan, huh?


quirkytizzy: (Default)

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