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AND I AM HAVING SO MUCH FUN WITH IT! http://play.magneticpoetry.com/poem/Poet/kit/


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FORGOTTEN LOCKS - date unknown, circa 2012

Every lock needs a key, but this was a lost lock. A lock that had been hidden from the ages, buried in a millennia of rock and rust. Whatever secrets it had guarded, the room beyond it could now only be a crumbled study in dust. The carefully studded rocks slouched grey and sullen. It resented the march of time as an aging matriach resents the craggy wrinkles that settle on her face.


Not a great poem but a poem nonetheless. I think it was some exercise in my Creative Writing class in college. I miss that class. I miss pushing myself. I miss hitting that perfectly right note.

I think I just miss having something to do. Something to be accountable for. Grades. Criticism. Praise. I miss purpose, even if that purpose was nothing but the promise that I'd wake the next morning and be well enough to write an entry on Livejournal. It's easy to find something to claw into when you're as sick I was a couple of years ago. Easier, at least. I recall feeling as if I was spinning apart at the time, but looking back, survival became its own handhold.

What do you sink your teeth into when there's nothing to survive through?

What do you claw your way through when the only thing you have to survive is your own incredible boredom and lethargy?

A less healthy Teressa would take this opportunity to create something to survive through. As it stands, I've no energy for that kind of survival. I've even less will to drag my loved ones through having to survive me. These are good things and I am grateful for them. I am still unbelievably bored.

I should go to a goddamn Meetup or something. Poetry readings. Gas money becomes an issue. But I've got to start doing something. I don't even have the luxury of "going out of my mind" with boredom. It's just a fog, deep and settling, and there's only so many people I can pick fights with on FB before even I get sick of myself.

I've never been so....aimless. Never had the opportunity to become aimless. There was always a job that needed to be gone to or class that needed showing up to. Now there is no job, no class, no volunteering, absolutely nothing and no one to be accountable to.

Is this what people go through when they retire? I always thought that sounded like freedom. Now I realize it's merely a different kind of prison.
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I dislike the idea of writing without inspiration these days. I want to write pretty - and if I can't write pretty, then I don't want to write at all.

This, of course, ignores the literal decades I wrote every day, whether or not I had anything pretty to say. The grind of the boring, bullshit writing that allowed me to get good enough TO write pretty in the first place. But it's the only thing I'm good at and after two damn years of doing absolutely nothing with my life, I miss being good at something. Oh, I'm plenty busy on FB, but it's transient. As Jesse says, there's nothing there but a flash in the pan, one you have no hope of recapturing once your timeline refreshes. He has a point. I've been thinking about writing lately. So I write tonight. Not that this will be anything but a single entry, sandwiched between months of silence, but I figure if I say it, at least it's there.

For whatever that's worth. Cassie says my writing has saved lives. I wonder at what point that compliment loses its shelf life. If I don't write but a few paragraphs a year, does that invalidate it? How long can I go without writing before I'm no longer a writer? Before I'm not supposed to take pride in it? I suppose it doesn't matter. I write because I write. I don't write because I don't write. Life ebbs and wanes, who is to say art isn't the same way?

A Thing Of Note has occurred, though. I've gotten a tubal ligation. I am now sterilized. The baby factory is forever closed, without ever having been used. As of last Friday, my fallopian tubes are permanently severed. I can't get pregnant. And it's as if I'd been holding my breath for years and I've just now exhaled. It's as if I've finally made good on a promise, a promise I made to my body decades ago. I will never have to share it, I will never have to give it to anyone else. It is mine and mine forever.

The reasons are many and we all know them. I've gone on about them for over a decade here. But what gave me pause is when my OBGYN asked what the tipping point was, as we'd previously been discussing the Mirena. My answer was two-fold, but both connected to the current political climate in America.

(1) Brett Kavanaugh, one of the most pro-life Supreme Court Justices in recent history, was confirmed last year. Emboldened, states have been enacting truly draconian laws. The risk of not being able to obtain an abortion FAR outweighed the risk that I could change my mind about children. (I can always adopt if I want kids. I can't exactly give back a kid that I decided I didn't want.)

(2) The Mirena is a 3 year birth control (or at least the one my insurance would pay for was). After that, it has to be removed by a medical professional and replaced. But what if I don't have insurance in three years? Would the plastic just sit in my uterus, rotting and damaging me? And if I were able to scrounge up the money to get it removed, would I have the ability to get a new one?

I went 20 years without health insurance. It is not inconceivable that I could be without health insurance again. One should never need to make a permanent medical decision for fear of not being able to access medical care in the future. But this is America and this is where we are.

So, knowing all of that and knowing how I've been saying for many years now that I do not want children, the choice was easy to make. I'm incredibly privileged to even be able to make this decision. 44 million Americans don't have health insurance and if it weren't for my failing kidneys, I would be one of them. So many women can't make this choice, even if it is the best for them, simply because they can't afford it. Without insurance, they run 6-7 thousand dollars and who has that kind of money just lying around? (A recent study showed that over half of Americans can't even scrape up 400 dollars in an emergency without relying on a loan or family - and I'm definitely poorer than that.)

So damnit, I'd better take advantage of it while I've got it.

In a strange turn of events, I'd never been so grateful for my lupus as I have been in this situation. There wasn't a soul who questioned my decision. Every medical professional rustled quickly through my medical history, turned to me, and said "Okay, we can set this up, no problem." I'd heard horror stories about how hard it is for a woman to get a tubal ligation - especially a childless woman - and was prepared to fight, heaven to hell, for it.

I didn't have to so much as raise my voice. No impassioned pleas, no having to insist on my own agency. It was exceptionally relieving. And now it is done and so many fears have been laid to rest. To have this kind of authority over my body is healing in a viscerally soul-deep way. I can no longer be trapped by a pregnancy, held prisoner in my own body and life in the years to come.

It has been difficult to feel as if I have any control over my body in the last few years. The lupus ravages what it will, when it will, how it will and I have no say in it. This, however......this I can do. This I can choose to do. This cannot be taken away from me.

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It's the torch one hopes to never have to light. It's the ragged stick scraped from the mud, wound with pieces of your own bloody shirt. It's the shivering hand reaching to flick the ancient Bic, praying the cold will not extinguish the flame.

Then it becomes the blaze of illumination, so sharp that it blinds you. But when your blinking eyes finally adjust, you'll know it to be the single thing you need to carry you through the winding nights. You will falter. Your feet will trip on the roots and weeds clawing at your calves, but you can see what's in front of you, and because of that, you can take the next step. This is the torch I lit 25 years ago when I called Child Protective Services. I opened my eyes and I saw. I hurled a rod into the gears and the entire machine screamed. And now...now my torch joins with another's, newly lit.

Audrey's torch has hissed to life. I recognize the flame in her eyes. I hear the hardness in her voice. I feel the heat radiating off her words and I know that she is becoming illuminated.

Hope is a dangerous creature. Legacies are even more fraught with danger. But it is her that will carry the hope. She will be the next to step out of the cycle, even as I know the road ahead will be felled with traps and scars. She's got this....core inside of her. An incalculable ability to seek help when she is unsafe. When Cassie, out of her mind on drugs, did not come home, she told someone, even as she knew it might mean CPS would take them away again. When my stepfather ripped the head off of a bird to teach Julien a lesson, she told her teachers exactly what had happened. She did so knowing my mother and stepfather would crucify her.

And they did. All of the words they'd smeared me with, they painted over her in wide swaths. Destroyer of the family. Trying to break them up. Bitch. Crazy. Trying to ruin them. "You're just like Teressa," they said.

"When they said that," Audrey told me, "I was proud".
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So for the last few years, Jesse and I have had Thanksgiving with his ex-roommate and "best friend of 30 years", who still lives down the hall. His mother, not knowing that her manchild son does not have any friends outside of Jesse and I, always orders her son a holiday meal for 5. So while I greatly dislike this man, I bite the bullet come the holidays for the food and to let Jesse have some 'family time' with his best friend.

Well, as time has gone on, more "ex" best friend.

SOME BACKGROUND: RL (short for Rules Lawyer, which is the kind of RPG player the guy is) drives me up the wall. He's got some seriously incel-ish ideas about women. He will occasionally complain that he's never had a girlfriend and is still practically a virgin. (By his own admittance, he's only had sex once. The dude is 46.) At the same time, he refuses to talk to women, instead choosing to spend all his time mooning over hentai and Asian porn.

Among being a racist and someone who thinks if men have sensitive nipples they must be gay, RL is also a nudist. He's an exhibitionist, which is annoying on many levels, but I just choose not to ever visit him. Not seeing his squat dick swinging under his red, chubby gunt is simply a matter of not visiting his house. So far, so good.

Until last night, that is. Jesse had talked with RL to see what the Thanksgiving plans were. This year, RL gave us a choice.

Jesse and I were more than welcome to come over and enjoy some fine food with him for the holidays if we were to all agree to have dinner naked (as he told Jesse, it's 'been a while since he's seen a naked woman.") Or.....he would give us a couple of frozen chicken breasts instead.

Make no mistake, the condition was clear. Turkey and mashed potatoes? I must show him my tits. If I chose not to? Well, a couple of pieces of freezer burned chicken would be the alternative.

Jesse texted "She understands that in your house you'll be naked. But it'll be a clothes-on event for her."

RL fired back "I figured. Hope she enjoys the chicken."

It was at this point that I began to laugh uncontrollably. A wild howl, a cackle, a belly guffaw that could not be contained by these four walls. The idea that Thanksgiving dinner was somehow a negotiation for mild prostitution was just too funny. It was BEYOND hilarious. I think it genuinely surprised RL that we did not swoon upon his gracious offer, for what could be more tempting than a near virginal 46 year old dick and some mashed potatoes?

The whole thing is just SO ABSURD. I find myself less angry and more horribly amused than anything else. However -

I AM angry on Jesse's behalf. While RL has not been a true friend to Jesse in years, the two have over 30 years of history together. It's a friendship that Jesse has not wanted to give up on. Last night, RL told Jesse, in as many words and actions, that his only value to their friendship was his naked girlfriend. That the only way he would deign Jesse worthy of his attention was if Jesse acted as a pimp. It's called into account a lot of the insensitive, awful things RL has said to Jesse over the years - and the ways that RL has mistreated Jesse.

That hurt Jesse. A lot. THAT makes me angry. THAT makes me want to kick RL's dick so far into his hanging gut that he'll be pulling it out of his belly button.

But this is not the time for violence. At least, not today.

So yes, this year Thanksgiving will consist of a couple pieces of chicken, some carrots, and a one dollar box of stuffing. It will be a small meal but it will be cooked with love and wondrous seasonings. (Jesse's quite the wizard when it comes to seasoning food.) Jesse and I will eat at in our chairs at our computers, as we don't have a table to eat on. But Jesse and I will be eating with family - and that's each other. And the cats, who will probably get a few bites of my chicken, even as Jesse will fuss about that. (It's Thanksgiving for them, too!)

And that's what counts. At the end of the day, THAT'S what really counts. Some lemon and pepper seasoned chicken with roasted carrots, stuffing with caramelized onions mixed in (we still have an onion leftover from last week) and real. family. That's what Thanksgiving is about.

Well, and about my new catchphrase to determine basic human decency - "Did you choose the chicken?"
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Lupus is a disease that disproportionately affects minority women, especially black women. Doctors aren't sure why that it is, but lupus does, indeed, hits 2-3 times more minority women than white women. That's not an anecdotal statement, that's scientific fact.

But I've noticed something weird. The weird part comes from how many more white women I see in support groups as opposed to women of color, even though technically, there's fewer of us. Why is that? The one face-to-face support group I found was in a predominantly white area, but you'd think the racial breakdown of the disease would still lend itself to there being more POC in the room. Does it have something to do with socioeconomic factors? Is the idea of "support groups" more a white-people thing?

It seems really weird that something like that would break down over racial lines, but maybe it does? Am I just not noticing the number of minorities, since I am white myself, and am falling into some kind of visual bias?

Benicek, THANK YOU FOR THE PAID TIME! I really appreciate that! I've been wanting to go back and upload various pictures into my entries, as the Photobucket links are now all broken. I'll be able to do that now that my Scrapbook is able to hold more pictures. THANK YOU!!!

And Penlessej, that's fascinating about the BP levels. Now that you mention it, it makes total sense. The night that I was originally admitted and kicked this whole thing off, my blood pressure read 207/113. At the time, I had no idea what those numbers meant and even less understanding of why the nurses were so concerned. My nephrologist did say there is a strong connection between blood pressure and kidney functions but I hadn't quite realized it until you put it down like that. It amazes me just how interconnected the human body is. I always sort of saw my body as this thing that swung around with lots of independant parts working side-by-side. If one fails another would just work a little harder to take its place.

Turns out the body is less a system of ropes and pulleys and more a human sized game of Jenga.

And you're right about the survivability factor these days as opposed to the days of yore. In the end, I'd much rather choke down entire pharmacies and get hooked up to dialysis instead of just straight up dying. I often complain about the cure being worse than the disease, so it's good to be reminded of the fact that without these cures, the disease is death.

For a final bit of hilarity, I remember having a thought as I was leaving my disability hearing last week. Rachael (deadname David) who constantly touts herself as being "disabled", had complained about her own disability application being rejected. (After only one application, no attempt at appeals, and a disgustingly entitled belief that her "disability" should put her on the same fast-track as those with cancer. Hell, even my disability application wasn't put on the same level of cancer.)

But her disabling "depression", you see, is so disabling that she's not able to work and also not able to not spend 14 thousand dollars of rent money on anything but toys and also makes her unable to attend free treatment even when other people bust their balls trying to find it for her. (Yes, I'm still mad about that. I think I always will be.) From what I recall on her Twitter, there was a lot of wailing and teeth-gnashing and postings of "guess I'll just die?" memes.

Bitch, you don't know what it's like to actually be disabled enough to possibly die (oh, the rants I've been wanting to make on that one!!) But more than that, the thought I had while climbing into my car after the hearing that I had waited two years for, roughly 15 hospitalizations, and the doctors confirmation that I was looking at permanent dialysis was "Did you think it was as easy as saying "I can't work send me a check pls."

Yes. Yes, she did think it was that easy.

It's infuriating, but it's also high hilarious at the same time. And when it comes to dealing with disability, I'll take all the laughs I can get.
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After two years of waiting, I had my disability hearing in front of a judge this morning. I had thought this would be a preliminary hearing, but it turns out my case does not require that. I'm not counting my chickens at this point, (there is always the possibility that I will have to file another appeal), but I believe the hearing went well.

I was oddly not nervous at all in the days coming up to the hearing. I'd read online and called my lawyer to prepare for the kinds of questions I'd be expected to answer. The do's and don'ts, the specifics of what my answers needed to cover and, of course, what not to say. (Those were mostly in the realm of "don't argue with the judge" or "don't say you know fakers on disability, so you should get it easily"....which....duh? People have to be told NOT to say those things???) I DID get severely stressed right before the hearing, as I got lost and had to call my lawyer for directions.

But once I was in the building, I calmed down. This hearing would be what it would be. All I could do would be to answer honestly, remain calm, and be truthful. I could tell I was nervous in how tight I held my body, but my words were steady and my heart paced. (Of course, that's likely the insane increase we've put on my blood pressure medications, as my BP has been in the 160/110 range for six months now. Still, med induced or not, it was a pleasant surprise that my heart stayed where it was instead of racing out of my ribcage.)

From what I can tell, it was all standard stuff. My lawyer asked most of the questions, with the judge breaking in once to clarify a hospital date. There were the regular questions about how my days were spent and what symptoms influenced what activities. The largest influencers centered on the medical accomodations I'd need with full time employment. I see my doctors on average 2-4 times a month. That would affect work attendance.

Due to the medications and the lupus, I'd require frequent bathroom breaks. My lawyer brought up the looming dialysis, which of course would greatly affect work attendance. The symptoms of both my medical issues and mental issues (much worsened now with the lupus) produce cognitive dysfunction. That would also require medical accommodations. The only moment where I was nervous when was the Vocational Expert mentioned three types of jobs that cases with my presentation are sometimes able to work. I calmed myself by saying to myself "It's okay, she's just doing her job. This is what she is paid to do. Relax."

After that the judge took a moment and re-read over my files and the testimony my lawyer and I had given. She then stated that based on my case, I'd be operating "off-task" 20% or more of the time. My lawyer and the Vocational Expert agreed. I can see that "off-task" relates to on-job performance but I am unsure if that also includes work attendance.

Several disability websites I've read said that a ranking of 10% off-task is necessary for approval. A ranking of 20% or higher is generally a high marker in being approved.

Near the end, the judge and my lawyer asked the Vocational Expert if she believed I'd be able to work full-time with being 20% off-task. The Vocational Expert replied, first to the judge and then again to my lawyer, that she "did not believe I would qualify for competitive work." I'm not quite sure what that means exactly. Google has not been helpful. If I go by contextual clues, however, I think it means that she stated I would not qualify full-time work.

Does anyone have any clarification on that phrase specifically??? "Competitive work?"

The hearing closed after that. My lawyer, in the quick de-briefing we had outside, said it's very likely I'll be approved, especially with the Vocational Expert's testimony. He said the mere fact that I'd be taking off (or leaving early/coming in late) a minimum of 2 days a month for doctor's appointments is a strong carrying point. I left feeling encouraged by the proceedings, but also wildly relieved at it being over.

At least for now. There is always the possibility I'll need to appeal again, even as my lawyer said he does not think it is likely. But I've been waiting on this day for two years. I now have nothing - absolutely nothing - I can do until I get the decision letter. My lawyer said it should be between 30-60 days. Some websites say 90 days. No matter when it arrives, though, all I can do is wait. So I will wait. Everything I could do, I have done. Everything I may have to do later will come later. Right now, I can only let the cards fall where they may. It is now out of my hands.

For the first time in a long time, powerlessness is a relief, not a frustration.

For a commentary on the state of America: My biggest concern with my disability case is the continuation of my insurance. I couldn't care less about the backpay right now. I just want to be able to continue seeing my doctors, as the quality of my life - and painful death from renal failure - would be on the line without insurance.

Isn't that sad? Here in America, I have been fighting not for money, but healthcare.

A family friend passed away a couple of days ago. Pamela's sister. She'd developed cancer a few years ago and gone into remission. There were permanent complications, though, and I guess one of those was the risk of developing an abdominal abscess. It was what killed her. Likely sepsis, though I'm not entirely sure. It was sudden, so very sudden. As far as I know, she'd gone into the hospital a few days before for pain and fever.

She never walked out of that hospital.

It has scared me on a personal level. Here she was, barely having broken 50, in complete remission from a disease that kills, and she was done in by a complication from her chronic illness. A complication that came out of nowhere. It took her out so quickly, with no build-up, no lead, no warning. She was here one day and gone the next.

Will that happen to me? Is that how I will die? A dirty trick of the human body? The fact that the body can fail at any time, just because? I do not fear death itself but I DO fear the swiftness of medical complications. I fear my death blindsiding my loved ones. I fear my death not having meaning beyond having been physically frail beforehand. A cautionary tale of how doctors cannot save everyone, no matter how hard they try.

It's selfish to feel this way. Pat's grandmother has now buried two out of her four children. Pamela, two days before her sister died, had a malignant breast tumor removed. They are going through so much. So I ask these questions here, away from their grief.

We are all waiting for Death. I know this. I just want to have some kind of warning, some kind of real warning, that it's coming.
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Franklanguage, it's not so much that I couldn't give up meat or dairy (I wouldn't want do it completely, but I don't think it'd be a terrible sacrifice to cut way back), it's cost that prevents me from going vegan.

I looked up how to make almond milk. I would need a blender (50+ dollars I don't currently have, but really would be an extremely good item to invest in.) A pound of (usable, not candied or pre-salted) almonds is about 10 dollars from Walmart and makes 2 cups of almond milk. There are 16 cups per gallon - so I'd need to make 8 batches of almond milk to equal a gallon of milk.

In order to equal an entire gallon of milk, I'd have to spend 80 dollars. While we don't drink milk anymore (we only use it for cooking, cereal and coffee creamer) we still go through a gallon of milk a week. Spending 80 dollars a week on milk simply not feasible.

BUT - I took a look at some of the sites you recommended (and the site you recommended, Riverwynne) and saw some veggie dishes that looked VERY doable. I can splurge 10 dollars on squash and fresh garlic in the beginning of the month. I can splurge and make a quinoa and kale salad. Those things look amazing and while they will be limited to splurges, they will be HEALTHY splurges.

I say splurge because our total monthly food budget is roughly 250 a month, between food stamps, begging from Pat, and food pantries. We feed ourselves on roughly 8 dollars a day - which has to be broken up into 2 MEALS for 2 PEOPLE each day. That's about 2 dollars per meal. We end up eating a lot of spaghetti (total 2 dollars from the dollar store) and lots of beans and rice.

And most months, it really does come down to being that tight. This week was so tight that I was counting how many squares of toilet paper I was using, just to stretch it out over the last two days until Pat gets paid and can give us some money. (Because I'd spent the last 3 dollars I had between my food stamps, Paypal card, and spare change dug from the bottom of my purse to buy us a day's worth of food.) I couldn't afford the single dollar it would have taken to buy another 4 pack of toilet paper from the Dollar Store.

I mean, I'm good at being poor. I know where the food pantries are. I know the public restrooms where you can steal toilet paper. I know I can spend 1 dollar on a sandwich at McDonald's and walk away with several handfuls of napkins that will double as toilet paper AND cleaning supplies. (Those two things being useful ONLY if I have the gas to get said public restroom/restaurant.) I know baking soda sprinkled on the carpet instead of carpet deodorizer is waaaay cheaper (and more effective in removing smells.) I know all these things.

I'd like to know what it feels like to NOT know those things. Or at least, what it's like to not worry about those things.

I don't mean to make excuses or cry poor me over being so poor. Hopefully things will change soon with the disability hearing. Hopefully.

And penlessej THANK YOU! I will definitely be getting your personal experiences in here shortly. I had another visit with my nephrologist. More on-one-hand-and-then-on-the-other, but more good news than not. At least as in "Yeah, you're gonna be on dialysis but it's not as imminent as we thought" kind of good news.

I love you all. Food stamps come in tomorrow and I. Cannot. Wait. Often we eat only to the point where we are no longer ravenous, as to make sure there are leftovers enough to feed us for another meal. It means sometimes we aren't able to eat till we're full. Leaves us feeling a low-level, but constant, hunger. If there's one feeling I've become accustomed to that I'd like to rid myself forever of, it's that.
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If I'm this nervous tonight, on the eve of midterm elections, I'm gonna need valium to get through the night on November 6th, 2020.


Nov. 2nd, 2018 07:00 pm
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What did I write about before lupus? I don't remember.

I'm going to have to go back and re-read.

I've been slowly going through those links, Cinemababe. Thank you for that. Just you putting together the information for me to go through helps SO MUCH. Silly, isn't it, how a simple Google search can be so frightening? You've always been so great at offering me links when I've been too nervous to find them on my own. Thank you. I found a video in one of the links describing some things about dialysis. I haven't yet the courage to watch it, but I definitely wouldn't have found it on my own without your help.

And hooolly shit, Disgruntled Girl, I had no idea that the dialysis industry was in such trouble. Now I know to ask about whatever dialysis center I wind up at. I don't know if I'll have any options to change centers but just knowing the dangers is useful. Also jesus, they better fucking disinfect that shit or I will pitch a high holy hell fit.

And Franklanguage, your suggestions don't bother me at all. The largest problem with a vegan diet right now is money. A quart of almond or coconut milk is about 4 dollars. An entire gallon of milk is $2 dollars. Food money is tight enough where that 2 dollars saved is vastly important. As it is, I have to shop at a discount grocery store, because the 2.00 I spend on milk there (as opposed to 3.69 at a regular grocery store) means I get one more day's worth of food. Even with foodstamps, the food budget - that covers both Jesse and myself - works out to about 250 a month. That covers a semi-decent renal diet for about 2 1/2 weeks. After that, we make do with food pantries and whatever Pat is able to give me out of his own refrigerator.

Do you have any recommended websites about vegan on the cheap? I sincerely doubt I'd be able to go vegan full time, but incorporating vegan aspects into the diet wouldn't be so bad. With luck, if disability goes through, I'll soon have more money to eat better.

(Yeah, if. Everyone from my GP to my nephro states I should qualify, but I hear so many horror stories of people never getting it, even if they got thrown into a woodchipper or something. Not to mention the current political climate. I worry. I worry a lot.) The biggest worry is losing my insurance. These are not cheap treatments I'm on. If I have employer-based healthcare, I will likely be responsible for copays, percentages of hospital stays, tests, etc.

Even with a full-time job, I will not be able to cover the roughly 100,000 a year my treatment generally runs, That's a lowball estimate, if I include two hospital stays a year.. And I'd have to work a full time job to pay the bills, which would disqualify me for any kind of Medicaid. (That first year and a half....god, I don't even want to know what I racked up in actual bills.) If I have to pay even a fifth of that, that's still twenty thousand dollars a year. There is no way in hell I'd be able to pay that and support myself.

Lots of worry there.

Things that are not lupus to write about......................

Yeah, I'm gonna go back and reread.
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Yesterday I got confirmation of something that, while I knew - knew enough to have comfortably joked about it for two years now - I'd still not entirely dealt with. In my nephrologist's office yesterday, I half-joked "So, I figure I'll be on dialysis eventually. Like, it's inevitable at this point, right?"

It was met with a somewhat sad smile. The nurse practitioner nodded and replied "With patients like this...with cases like this...it's extremely likely you'll be on dialysis. Right now, though, the point is to put it off as long as possible."

I mean, I knew that. I really did. I wouldn't have been joking about it so frequently if I didn't. It was still a blow to hear it directly.

Right now my kidney functions are hovering around 30%. That's a drastic drop over the last year from the roughly 70% it had peaked at. My nephrologist mentioned that my kidneys have since developed scar tissue (how? I don't get that. It's not like I'm sitting there carving my kidneys up from the inside out? I don't understand how they develop "scar tissue"?) and that will place fixed limits on further healing. While I'm managing to keep up enough to stay out of the hospital, the time for miraculous recovery, for last minute Hail-Mary's, has passed.

All bodies eventually deteriorate. Hell, that's what aging is - an inevitable deterioration. No one gets a reprieve from that. I'm not that special. Still, it's one thing to know that. Another to see it in the numbers, month by month. The fact that I see my specialist every month says something about the severity of my health, since seeing a specialist more than once a year in America is like pulling non-existent teeth.

All of this, oddly, during a time when I feel relatively healthy, too. The human body is so strange. I feel fine, or at least finer than I've felt in years past. But the labs, month by month, don't lie and the truth is that I'm on a slow decline. One that I can do very little about.

The specifics confuse me. My iron levels are too high while my red blood cell counts are too low. My phosphate levels climb regardless of diet and medication while my protein levels drop to alarmingly low levels. My blood pressure soars while my magnesium levels fall. I dehydrate easily while also needing to be on diuretics, lest I develop fluid around my heart. It's all so on-one-hand-and-then-on-the-other.

I suppose it doesn't matter much in the end, so long as I take my medications and do what I can to follow a healthy diet. What will be will be. It's just that it will be dialysis - and that's frightening.

I came home yesterday and told Jesse that there were two questions on my mind, one of which was ridiculous, but present nonetheless. "Will I get fat?" I asked. "Because I don't want to get fat." What a RIDICULOUS thing to worry about, right? And yet, there it is.

That was followed by another question, the real question, the one that I'm not sure can actually be answered. "If I'm on dialysis, does that mean I won't be independent anymore?" I don't know a damn thing about dialysis except that it's spending roughly 15 hours a week hooked up to a massive machine or else you'll die. Quickly. Painfully. That means a great deal of things, such as travel, will forever be out of the question, unless I am near a metro area with a hospital where I can get dialysis.

Not that I wanted to go backpacking through Europe or anything. My idea of a great vacation is Disneyworld. But the option for slumming it through the Swiss Alps would be removed and that grieves me.

What if something happens to Jesse and I find myself living alone? Can a person be alone and do dialysis AND keep up on running a household? Will I need closer care than I already have? Will I be able to care for myself? Will I be sicker, day to day, and lose even more ability to do things like clean house and run errands? What responsibilities will be added to Jesse's care of me?

Lots of these questions could probably be fielded with a quick Google search. I'll do so eventually, but me being me, I'll have to work up the courage.

I try to not get too worked up. After all, I'm not actually ON dialysis yet, so spinning my wheels about how tragic my life will become (or at least, how tragic I'll feel it's become) will do no good. But it's no longer a theoretical and for that, I think about it.
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Restless dreams as of late. Dreams of being away from home, trying to get home, and somehow having trouble getting there. A common theme in my dreams the last few years. Irritating but common.

I've been trying to go back and read my LJ in its entirety from the first post. It's a massive undertaking after 14 years of writing, but a couple of entries a day isn't so bad. But my early entries are littered with posts about my mother. Posts filled with sympathy and confusion, which is annoying because these are things I no longer feel for her. I know that I had to feel those things in order to move passed having to feel those things, but it still makes me want to shake 2004 (and all the way up to roughly 2011ish) Teressa.

So much of the struggle seems melodramatic since I've gotten sick. I know that's more or less how trauma works - we rank it on a scale, we triage it. And the struggles were necessary, absolutely necessary, to moving on. I know this. It's just eye-rolling to get through it.

A friend of mine on FB posted a meme about spite being a fantastic motivation for living. It rang true to me because spite was a massive motivation for me for two decades. All of my emotional healing from my family, the continual drive to therapy, was based out of spite. Based on proving them wrong. Based on living a good life as a form of revenge. It worked well. It gave me the energy to fight through some truly traumatic things. Then I got sick and suddenly I had no energy to live my life for anyone but myself.

I still feel a bit un-rooted by that. A bit confused about where to go without spite leading the way. I suppose it's normal to not always know where you're going. I wonder how normal it is to not know why you are going. Maybe it's completely normal. Maybe it's not normal at all. Maybe it's all part of a midlife crisis. (I am on the early end of being the right age for one of those.) I guess no matter how normal or abnormal it is, it is where I am.

I must gather a breakfast together. I take 24 pills a day currently and without food in my stomach, I may as well be chewing down battery acid. I'm still not used to being the person who has to eat the equivalent of a small-but-well-stocked pharmacy just to keep my internal organs from murdering each other. Still, I definitely feel better these days as a result.

An upset stomach is an acceptable price to pay for extending my life by decades.
quirkytizzy: (Default)
Because I was feeling pretty good yesterday and wanted to immortalize my vanity....and the fact that right now, edema isn't kicking my ass and I actually look like my regular self. Also, the kitty that photobombed was Rupert, the little scamp we are going to get shots for later this week!

More ridiculously vain pictures below the cut )
quirkytizzy: (Default)
Annie, THANK YOU! And Michael - thank you as well, AND your lovely wife! I can now get through the next few weeks - and Rupert can get his shots! Thank you all so much - god I love you guys. Knowing that the support is still there, both financially and knowing that there are those out there who still witness, despite the ghost town this place has become, is invaluable.

Hell, despite the ghost town I've become on here. I love each and every one of you, thank you. I wish the English language had better words than "thank you". It always seems so paltry, but I don't know the words to say it any better.

I've come to realize I'm depressed, though it seems entirely situational. I can't work and I can't volunteer. Doing either of those right now hurts my chances at receiving disability. As it stands, I wouldn't be able to manage anything more than part time anyways, but it's left me with a vast amount of free time and little to fill it with. At first I thought I was just bored. And I am. I am SO bored. That boredom leads to even further fatigue, stacking onto the lupus fatigue, and leaves me staring at the screen, trying to distract myself.

It was when I realized I haven't showered more than once a week for easily a year now that I figured out I was depressed. I couldn't figure out why I stopped writing. Pat pointed out that depression will sap away the want to do things that I enjoy. I forgot that. Jesse encourages me to return to writing, to write a book, hell, to just write anything. As always, being implored to "do something" with my writing annoys me. I push back on the idea and instead spend hours on Facebook.

Which has become its own trap, with the political and moral state of America. I find myself becoming genuinely despondent. The existential angst is reaching previously unknown depths. The outrage treadmill in years past was....well, never healthy but it never affected me like this before, either. It used to be fun to argue. Being provoked and provoking others was an interesting way to pass the time. Now the arguing comes with incredibly high stakes, even as I ponder the final uselessness of arguing morality on Facebook. I cannot decide if humanity was always this cruel and blind or if it is just a product of our times and the proliferation of social media. I cannot get around how the worst of all this is not the ruling class themselves, but the people below them. I've seen enough evil in my life and now it seems I see evil all around.

And the evil is often so banal. So mundane. So entrenched in the common man that it becomes unremarkable. How do you fight what others see as normal instead of evil? How do you fight a war that has no soldiers but is instead a mess of ordinary people believing that they stand for ordinary things?

In the end, I keep asking myself if my country is really becoming so hellish, or am I just depressed and not able to separate the two properly? Probably both.

The only other thing of note that's happened in the last few weeks/months is that Jesse spent a couple of days in the hospital last week. He turned out to be fine, having come down with a chest infection that antibiotics are clearing up, but there was initial concern about a heart attack and blood clots. Hospitals are triggering for him, as he spent 15 days in sedation from the swine flu in 2008. It gave him amnesia and physical deterioration problems that took years for him to recover from. He is also terrified of needles - and for some reason, they gave him ALL the needles during his 48 hour stay. Three IV's, 4 blood draws, 2 contrast shots, 4 blood sugar pokes, a shot of insulin AND a shot of an anti-clotting medication.

I was extremely proud of how well he handled it. Needles are not fun for those of us who are used to them. For those who have anxiety? It must be terrifying.

Winter has come early for the Midwest. Or early considering climate change, as last year the summer temperatures climbed well into November. The first frost has already settled on the grass this October. Winter has never been my favorite season, but as I spent so much of the last two winters in the hospital, perhaps there'll be a chance for me to enjoy it this year.

Or at least not hate it so much.
quirkytizzy: (Default)
THANK YOU, T.R, SOOOO MUCH! I can now get gas to get food AND the OTC meds needed! Thank you, I really needed the help - and the encouragement. Your message means a lot to me and from the bottom of my heart THANK YOU!


Oct. 13th, 2018 10:20 am
quirkytizzy: (Default)
And now I have to throw aside what little pride I'd scraped up over the last year in NOT asking you guys for money and....ask for money again.

Pat moved back home this week and as such, in restocking his apartment (he'd been living with his parents the last couple of years due to the diabetic neuropathy) is tapped for living funds. I have Rupert, our youngest cat, scheduled for his shots at 55 dollars next week and am out of cat litter, cat food, toilet paper, gas to get food, and the few OTC supplements needed for my lupus. (Like, stool softners. Gross, right? Not ANYWHERE near as gross as what happens when you take Iron supplements for a week WITHOUT them!) I have food stamps this week, but gas to GET to the grocery store is extremely low.

And I don't want to ask my father for any more money. Like, ever, if possible.

(I have an update on that that is really a not-update, but I will write it soon.)

So, uhm, yeah. Me, doing what I've done way too much on LJ, asking for a few dollars here and there, via my paypal.


My disability case is nearing it's actual hearing: Preliminary judge hearing November 16th and the final hearing in front of a judge in January.

Just getting from here to there....I keep telling myself, just getting from here to there.

Thank you guys so much. I didn't realize that when I got sick so much of my energy HERE would be devoted to what amounts to some really pathetic fundraising. I'm sorry - and thank you.
quirkytizzy: (Default)
I haven't but barely touched LJ in the last six months. I figured that it was me coasting on the road of Relative Health. But life does what it does, and whether or not I wanted it, it's given me a reason to write.

At least for the next few days. However long I'm chained by IV's to the hospital bed for, at the very least.

About a week ago I began experiencing extreme nausea and vomiting. This persists even to now. But when I started nearly passing out, pain in my chest when I walked more than 10 feet, and a cryptic message from my doctor ("Please come see me as soon as possible. We have to look at your kidney functions."), I was like "Awwww, fuck it, may as well go to the ER."

See, I was being sneaky. I'd been putting off the ER trip because I desperately did not want to be admitted. In an attempt to utilize the fact that my life is often lived in Opposite World, I packed my overnight bag, banking on the idea that if I was ACTUALLY prepared to be admitted, they wouldn't admit me.

But as you said on FB, Michael "The universe knows when you're trying to fool it. It only does the opposite of what you're expecting when you're truly not expecting it.. And the Universe has got my trick all figured out.

Apparently my kidneys are on the verge of failing again. I'm getting somewhat conflicting stories - the ER folks said I was in active, acute kidney failure and that my labs were all over the place. The nurses here, after looking through my chart, said my kidneys were dangerously close to failing, but it's only a few symptoms that they are reading as problematic, not the whole of all my labs.

I'll get a clearer picture when I speak to the nephrologist tomorrow.

My reaction to this has been strangely...cavalier. I think I have finally come to some kind of peace concerning hospital visits. This is just part of the package that comes with Lupus. And after roughly 14 hospitalizations over the last year and a half, it's just not big news to me. It's all quite routine.

Of course, I could be also be experiencing some denial here, and be way more scared than I think I feel, but...I don't think that's entirely it.

Is it okay for a person to get used to being in the hospital several times a year? Is it ok to be mostly ok with that? Or is that being jaded and cynical????

Btw, ya'll, I'm gonna make another entry here soon, a locked one, and give ya'll my FB and the profile pic, since there's actually several people with my first and last name in the USA. WARNING: I have some pretty diehard conservatives on my list, and they can be problematic. If you have to unfollow me to keep their shit off your page, no offense is taken.

It just occurs to me not all you have my FB, and I recently become active on it again. I miss you guys so much.
quirkytizzy: (Default)
ME: It's sad when people have to bury their kids due to gun violence. Kids should not be murdered.

OTHER PEOPLE: Yeah, but -
quirkytizzy: (Default)
Yesterday, while enjoying the archives of the dick-joke-stuffed world that is Cracked.com, I ran into the only article that made me want to punch the author. What article, you ask, out of the thousands of articles on that site, prompted this sudden urge to whirl my fisticuffs?

5 Life Lessons From A Former Mean Girl (Or, as another poster put it, "An Apolobrag On The Subject Of Bullying).

**WARNING: Very, very long post below the cut. Open at the risk of your own bandwidth.*

Kristi Harrison, an author who had previously captured my heart with her hilarious articles covering Pintrest's whimsical insanity, wrote an article about bullying. Specifically, an article about the short-lived period in which she was a bully. The audience was meant to be parents who were worried their child might be a bully. Kristi wanted to write an article reassuring parents that a bratty period in their child's life will not doom them to a life of thuggish behavior and drive-by shootings.

And that would've been a wonderful article, if that had been the article she had actually written. What we got was a trite regurgitation of pop-psych bully cliches, sprinkled with an alarming amount of self-aggrandizing romanticism towards being cruel to other children just because you can.

To be fair here, the majority of the ire thrown at the author was not necessarily towards the actions she perpetrated. Capricious as those actions were, many of the commentators understood that she, herself, had been a child. What blew up the comment section to over 2,000 comments was the tone-deaf recounting of her memories as an adult.

As a former bullied kid, I was one of those commentators. )

Far greater tragedies have unfolded in my life than my bullying experiences. They are, in fact, rather low on the list of things that trigger me today. But I remember. I remember, and always remember, and will always remember. My bullied days will not come to me as a "once forgotten memory." They were something that shaped me during the most formative years of a child's life.

I'm exceedingly lucky in that I've had decades of therapy to help me move past the obstacles that were kicked into my path (and often literally in my face). In fact, the only real hang-up that exists is a brief, few second panic to the words "Okay, choose your own partner!"

(In school, that always meant struggling to find a partner, as I was never picked, or always picked last, and always had to hear my classmates sounds of disgust at being put on their team/group.)

I have no problem finding partners for work or college groups these days. The internal scramble is fairly minor now, but the fact is that there will ALWAYS remain a tiny part of me that quickly wonders how I will make it look like I'm not hurt when no one wants to sit next to me. I'm 36 years old and while I'm exceedingly grateful that's all that's left of my bullied days, it is enough to make me remember those days in shame and horror.

For Kristi, there really is no shame or horror. It's just a funny chapter in a funny little time for her. Sure, she feels bad, but man, wasn't that funny?

All the shoes, Kristi, straight at your head.

Just....all the shoes.
quirkytizzy: (Default)
And Trump continues to break national records....

This is the first time in our country's history where a government shutdown has been invoked while one party holds the majority in all public offices.

Seriously - one year into a Republican controlled majority and the government finds itself unable to perform its job.

Someone, somewhere, was smart and started taking bets a year ago. A shame I didn't get into that betting pool - I might be rich.


quirkytizzy: (Default)

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