Fuck has anyone noticed how everything is more expensive lately?

I just had to pay a ridiculous amount of money to get a set of sheets that wouldn’t make my skin so scratchy or itchy I couldn’t sleep in them. And it was, with a huge discount, $60. Which is a lot for me but I know it’s less than I’d pay for replacing sheets over and over again because my body wouldn’t handle it or the sheets were so flimsy they’d rip apart the way my old sheets did (only I’ve gotten years and years of use from my old sheets, including after patching them over and over until they fell to pieces beyond the ability to patch). I’m just lucky I could afford it this month.

And I haven’t got an appreciable cost of living increase in years. Meanwhile my rent has gone up, food prices have gone up, medication prices have gone up, everything possible that could go up has gone up. Oh and did you know that for $60, I got ONE set of sheets. As in one pillowcase, one sheet, and one fitted sheet. WTF.

It used to be that, without food stamps, I could meet all my dietary needs for the month and have money left over for not only necessities (including replacement household goods), but random crap too. Now I’ve got maximum food stamps and I’m scrambling for the basic necessities most of the time. And I know I’m lucky I qualified so much, mostly because of ridiculous medical expenses.

This really worries me. Because it’s not like the economy is as trashed as it could be. I don’t know that I could survive on the streets or without healthcare. I’m so afraid of the Republicans gaining more power. Not that the Democrats are good, they’re plenty conservative these days and Obama is… don’t get me started. But I would vote for him a million times over because the alternative is death for a shit ton of people. Including me. The Republicans these days are scary and I’m not sure a lot of people appreciate how scary. Let’s put it this way: Lots of my friends have been Republicans in the past, and can find no place for themselves in the party now, and some of those same people are too far left for Democrats now. I’m not sure a lot of Americans realize our nation is ultra-right-wing compared to the rest of the world.

I didn’t intend this post to become that obviously political. But… I see things. I mean, I see patterns in the world. And those patterns tell me that we are in for terrible times sooner than people think. More terrible than most people imagine.

And we have to be communities during those terrible times. We have to band together and protect each other. Especially people facing multiple types of oppression, who could easily die in huge numbers. We have to because people might not survive. We have to because I might not survive. Survive changes in the world that will make World War I look easy for the world to handle.

People have to stop focusing all their attention away from these possibilities, hoping that if they don’t think of it then it won’t happen. Whatever will happen will happen whether you’re focused on escapism or not. If you’re not focused on escapism, you’re more likely to survive, and you’re more likely to help others survive.

To be a community as I’ve said many times before, you have to be focused on love above all else. Love meaning everyone doing everything they can to help everyone else. I’m not talking feelings, I’m talking the deepest level of ethics there is. And that means focusing on what is the most important.

Human beings as a species have only ever survived because we help each other out. We’re a social species. Which doesn’t mean we like chatting, it means we rely on each other in a deep way for every aspect of our survival.

Contrary to popular opinion, that doesn’t mean throwing out the people who are the most likely to die so that everyone else can live. There is a lot of archaeological evidence that severely disabled people have been assisted by other people since we were living in caves. People who needed to be carried everywhere, helped with everything, their food chewed for them, survived into old age.

So people who think just a bad economy, or any other kind of privation, is ever a reason to throw disabled people (however severe) or other vulnerable people to the wayside to save the privileged people who ~really matter~, is so full of shit I don’t know where to begin. We have been part of society since at least the dawn of the species and we will continue to need to be part of society and recognized as real valuable people who make important contributions. Anyone who thinks we need to be sacrificed to save everyone else the minute things get hard, doesn’t know what love or community means.

This kind of thing will become more important as time goes on. If you hear people saying there’s any kind of person who needs to be jettisoned so that everyone else can survive, tell them why this is not true. Fight them on it if necessary. It’s a myth that literally kills people. You may not convince the person you’re arguing with, but you may well convince bystanders. Remember the worse the situation the more important love and community, in the true senses of the words, are for our collective survival. There is no such thing as a non-contributing member of society. And the closest thing to that idea is not a disabled, poor, or otherwise marginalized person, but a person who consistently pushes hate-filled sociopathic ideals on everyone else and thereby ensures people will die.

Remember this when you make decisions, both large and small, that affect the society you live in. Remember this when our societies take the inevitable sharp downturn that they will take sometime this century. And especially remember this and pass it on if I don’t survive the changes that will inevitably come.

You know you hate the government when you get a letter from your retired, severely ill mother saying that she is not only poor, but now so poor as a result of medical bills, that she is dieting so her appetite will be small enough she won’t use up as much food. This is the fucking meaning of evil.

I’m not sure whether online banking is good or bad.

I can sit here and see that even with all of my food going on food stamps, and only $20 in random nonessential purchases, the amount of money in the bank is less than half what it was a week ago. And three weeks to go.

Apparently a huge amount of it is coming from medical expenses. Medicare keeps dropping coverage of essential prescriptions and then has the nerve to make me pay it $100 a month in addition to what I have to pay on my own now. And there’s still that $1400 medical debt I can’t pay. My rent had damn well better go down because of this (we get minute little adjustment to rent based on medical expenses) because this shit ain’t cool.

I also need to start checking if I’m getting recurringly billed for shit I don’t even use or remember.

I hate money.

This is good, but seriously WTF. (And, rambling about caregivers and food.)

I hate the system. I just hate it.

I got my notice saying I’ll get food stamps and fuel assistance, and it’s not the highest amount but it’s a good amount.

Then attached to it was this notice saying “Fill out this really long form and send it in the next two days or you may not get food stamps after all.”

It had to do with my monthly medical expenses, including the medical debt I’m in (because IUDs apparently don’t count as necessary, even if it’s to prevent cancer when you aren’t having periods and you have a family history). Most of the documentation is at my case manager’s office. So I gave her the forms and she promised to get it in by today.

But seriously. WTF. I mean I know they deliberately put obstacles in your way so you’ll get disqualified and save money. But come on. If someone hadn’t collected the mail yesterday I’d be screwed.

Meanwhile they’ve sent me my EBT card but no pin number. They said the pin number is coming with the notice of how much I receive and stuff. Except, oops, it didn’t. So now I can’t access my food stamp money until… I don’t know when.

I hate the system.

In better news on the same topic:

I found out that Jessica, who works here on Fridays, is an amazing cook. I mean I already knew I love everything she makes. It’s always both healthy and really tasty. But I found out this past week that she is one of those people who not only doesn’t even need a recipe to cook, but can cook amazing food out of random cheap ingredients that are left over at the end of the month.

I haven’t had anyone who could do that in eight or nine years. And that person, unlike Jessica, was terrible. But she used her ability to shop cheap and cook excellent poor food, to stay in her job even when she was abusive and horrible. I still remember the screaming match when I refused to believe her when she said “Retarded people can’t learn anything, so you need to lie to them to manipulate them into doing what you want, because they could never understand the reality.” And I had to sit there and listen to her say shit like that in front of her adult son with an intellectual disability, while he looked miserable and resigned, because he knew full well what she was saying. (He lived in the same group home as my friend.)

Meanwhile she lied to me about other staff, because she wanted me to slowly grow afraid of everyone but her. She also used to say awful things to me until I broke down crying, and then hug me and tell me what an emotional breakthrough I was making with her. She also lied about why she was always in trouble with the office — she claimed it was because she had such radical ideas, but it was really because she was an asshole who lied and hurt people. Dealing with her was a nightmare but because of the food, I put up with her until she put her hands on me and tried to restrain me.

Fortunately Jessica has shown none of the awful qualities that person did. I hope she’ll stay for a long time, because people who can improvise really cheap food out of random stuff and make it work, are rare as hen’s teeth in this field. It’s hard enough to find people who can make oatmeal (which is my breakfast and lunch every day) without screwing it up. And even better, she loves doing it even though she doesn’t get to eat any. I guess it’s a creative thing for her.

Anyway, I hope once I get my pin number, my food situation will improve. And I hope I don’t lose my benefits before I find out, WTF.

I had better damn well qualify for food stamps.

Because unless certain things are deducted from my bank account earlier than now in the month, I have basically no money until the 3rd. Yes I bought one thing this month but even that could be quickly eaten through other expenses I better damn well not run into this month.

Fuck the entire concept of money.

So with a cost of living increase in my RSDI(*) payments, I’m a few dollars over the line where they no longer pay my Medicare premiums. So now I have to pay an extra hundred dollars every month. Which means this feeble attempt by the government to adjust for an increased cost of living? In practice, makes me poorer.

In October, I had an IUD inserted. This is because I don’t have my period. And the lining in there just builds up and builds up without coming out. Which is a big risk for cancer, which runs in my family. Oral hormone pills barely create a period at all, and give me horrific migraines. The IUD gave me one huge massive period for a long time — showing the hormones weren’t doing crap before — and then it’s stopped and I feel great.

My gynecologist neglected to tell me that Medicare doesn’t pay for IUDs. Even for serious medical reasons like, oh, preventing cancer.

So now I’m $1400 in debt, in addition to the $100ish a month to Medicare. And I doubt they’ll let me do the payment plan that is actually right for my current income.

Fuck fuck fuck fuck fuck. Fuck the system, fuck money, fuck everything that practically seems to conspire to make sure disabled people can barely afford to eat. I’ve known since I was a kid that this is no way to run the world but it’s only getting worse.

.

(*) Most people know of SSI and SSDI. I’m in a weird little program with weird little requirements. You had to be on SSI. And have been disabled before the age of 22. And have a parent die, retire, or become disabled. And then you get something called Disabled Adult Child benefits (it has lots of other names). Where no matter how much income you have you still qualify for Medicaid (in certain states), but you have Medicare as well starting after a couple years.

And the income you get is called RSDI — Retirement Survivors and Disability Insurance. And there are weird little sets of rules that apply only to DAC, but most people in the system don’t know them and try to tell me I’m on SSDI. Which has totally different rules. And every once in awhile they try to cancel my Medicaid and I have to sic Legal Aid on them because nobody listens to a retard, even one who tells them exactly what page of the Medicaid manual to turn to. And Medicaid is important because that’s where my services come from. And for a program disproportionally involving people with developmental disabilities it’s ridiculously complicated to understand. And not understanding can get you in trouble.

“Universities teach us to renounce our sense of identification with the poor; they teach us this by mainly ignoring the existence of poor people and by treating us as “other” when we do become the subject of discussion. Universities teach us not to care too much, because it will undermine our professional role. Universities teach that we are separate from where we came from, that we are “qualified” (which suggests our families and peers are not), that we are justified in having power over people, in speaking for the subjects of our study. Universities teach us that we are “too good” to wait tables and clean houses, with the implication that those who do those jobs are “not good enough” to deserve better.”