#you have to jump through some real fucking hoops to NOT have health insurance

[telltalebatman]

tbh i am still not over the discovery that retirement pension isn't rly a thing in the states. like....... how the fuck is this even legal lol

[cannabisrefugee-esq]

(via The Welfare Gnome! It's Like a Sock Gnome Except This One Can Actually Kill You. Ft. Joker (Again))

The Welfare Gnome!  It’s Like a Sock Gnome Except This One Can Actually Kill You.  Ft. Joker (Again)

Cannabis Refugee, Esq.

Advertising / Media / Cultural Conversation

Capitalistic Patriarchal Medicine

Crohn's Disease Stories

Euthanasia / Suicide

Law / Legal / Benefits

December 20, 2019

According to the internet, a “sock gnome” is a mythical creature that pilfers socks.  Presumably it lives in or around the dryer where you put an even number of socks in and get an odd number out.  Sometimes it gets tricksy and spits out an even number but the pairs don’t match (meaning it’s pilfered one from more than one pair) but the usual evidence that you’ve had a sock pilfered by a gnome is that there is one left over that doesn’t have a mate and the missing sock never reappears ever.  This is a real thing (if not a real gnome) and everyone knows what this means.

Well, there appears to be a similar creature that lives at Social Services and pilfers sick and poor people’s applications for welfare benefits.  Or something, idk.  I assume these creatures are related but maybe not since this gnome doesn’t play games: it’s goal seems to be to drive you insane before it literally kills you.  I wrote here before about an application for benefits that went missing, along with a half a dozen other boondoggles that have wasted my spoons and left me scrambling to repeat some administrative process I was barely able to complete survive the first time.

Because while a sick person’s literal inability to jump through bureaucratic hoops is actually the best evidence that someone is extremely ill, someone has decided that only those who are well enough to sing for their supper (or pursue benefits) deserve to eat, as it were.  The first application that went missing was for food stamps, while today I found out that my application to get on a 4 month waitlist to see a doctor went missing 2 months ago and has not been since heard from: although my disability advocate hand-delivered it, the application was never received.

I didn’t know it had never been received since I was instructed to wait for 2-3 months for a phonecall from them whereupon they would then tell me that I had to wait another 4 months to see a provider.  Now I get to start the whole process over again.  Of course, the clock starts, again, from zero: 2-3 months for the application to be processed and another 4 months before I will be seen. And as both Crohn’s disease and high functioning Autism are untreatable and incurable, the only reason I’m even trying to get in to see a doctor is that I need up to date records of medical compliance (not actual therapeutic medical care since none exists) to support my claims for disability.  As if sick people have the time and energy for that.

Just “apply for benefits” then keep applying indefinitely or forever!   Just get showered, dressed, don’t eat or drink anything though because Crohn’s, get somehow transported across town, pretend to act human for a several hours while you are being humiliated, interrogated, starved and otherwise tortured in public, then somehow get a ride back home.  And do all of that without “acting” sick.  Easy peasy.

And truly, bureaucratic incompetence (or a welfare or Social Services gnome) isn’t even worth writing about and I wouldn’t bother writing about it except that it had an unsettling effect on me: I literally wondered, if only for a second, if I had hallucinated the whole thing and therefore wondered if my new disability advocate who had hand-delivered the applications himself, Dave, was even real.  Jesus Christ that was disturbing.  Around Halloween of this year, Dave had helped me complete numerous applications, some online, while he mailed some hardcopies out of town and hand-delivered the rest; the 2 applications that were both hand-delivered were supposedly never received.  One would be understandable, if not acceptable, but both of them?  I was shook.

Very shortly thereafter I realized that the only proof I even have that Dave came to pick me up several times, completed applications for/with me and took me home again is that one application we did online was actually received and has his name and information on it.  Much to my chagrin, they initially returned that “online” application to me in hardcopy to review, sign and return (WTF) but as it turns out, that bit of bureaucratic fuckery actually saved me from something awful — a literal break from reality — and was the only proof I had that Dave and our interactions were even real.  Also, my old disability advocate told me about Dave in front of another person and they both remember it.  (!)  So yeah, I’m legit losing my mind by now but at least I’m not delusional (that I know of). Everything about this is fucking terrifying.

Wait.  Is Dave even real?  Let’s review.

  At some point, I know my readers are going to get sick to death of hearing about this shit and I wouldn’t blame them.  Hearing about how the system truly victimizes people is unpleasant and predictably leaves those who don’t have to deal with it (yet) with the strong impression that disenfranchised people are “victims” experiencing “victimization” which is always, always read as a character flaw, or it is eventually, especially if it goes on for a long time and it often almost always does.  And this material is about as appealing to read as…idk, a book of vintage recipes where the first and second ingredients in every dish are Jello and fake mayonnaise?  Maybe.  There’s a trainwreck quality that’s hard to look away from, it’s interesting (at first) to see how all the various parts fit together (or ultimately don’t) and I suppose it’s possible to have compassion for the vintage cooks who were trying so, so hard to be resourceful and whatnot.

But eventually that person’s judgement will probably come into question and the blame will fall squarely on them if they consistently choose to participate in such insanity, in that case, preparing and serving Spaghetti-Os and sliced hot dogs suspended in savory Jello, or a canned ambrosia Yule log.  (I just watched a video of someone making a canned ambrosia Yule log from a vintage recipe, you can watch that here). Or in the case of a vulnerable person seeking benefits, choosing to consistently be relieved of their dignity and even being (seemingly) willingly neglected and abused.  The comparison is kind of a reach but what I’m getting at here is that it’s not pretty.  The things I discuss on this blog aren’t pretty.

So do I have an actual point?  Actually I have 2.  The first point I will make via another anecdote and is something I learned as a young attorney who was becoming seriously ill: I had been seeing a chiropractor/nutritionist for months to attempt to treat what was becoming unbearable chronic pain and GI issues when my health insurance company started denying his claims.  The “doctor” wasn’t being paid but I was still in disabling pain and his treatments were working.  Kind of. Until they stopped. We had to have “the discussion” which drew out our competing interests: my interest in continuing treatment without a lapse versus his interest in being consistently paid.  (Really, this is where the myth of the compassionate Western healer is always undone: the issue of money.  But that’s a post for another day.)  This discussion is never pleasant and as I learned, is absolutely meant to be ugly.

As a seasoned provider with decades of experience in the insurance game, the “doctor” calmly explained to me that part of the game is to pit the doctor and patient against each other so that they can’t provide a united front against the real enemy: the insurance company.  The goal is to have the doctor and patient part ways angry so that there is no reason to pursue an appeal and the treatment — whether it’s medically necessary or not — simply ends.  From the insurance company’s perspective, the problem (of exposure to liability) just goes away: if the doctor and patient part ways it doesn’t have to expend resources reviewing appeals and no further claims will be made, their exposure drops to zero, and they win.

Get it?  Bad guys 1, good guys 0.  And this, I think, is the dynamic playing out when people get fed up (and fired up) with hearing about what sick and disabled people go through — regular, relatively powerless people blaming and judging other regular, relatively powerless people for being “victims” instead of providing a unified front against our common enemy.  In this case, against our corporate and governmental overlords who spend billions if not trillions annually on “corporate welfare” and destructive black budget programs while reducing, eliminating or otherwise making inaccessible benefits that real people need to live in this shithole they created, not us.  And Big Medicine torturing sick people and deliberately (or leastwise predictably) making us worse.

We all have a choice, don’t we, to pick the correct side and to not fall into this deliberate trap set by the elite, to not go against our own interests, to decline the invitation to support our oppressors while undermining ourselves and our ilk, our own people.  Choose correctly.  It matters.

My second point is this.  I can only speak for myself when I say that I absolutely never wanted to be a “victim” and I spent my entire life and literally everything I had to try to ensure that didn’t happen.  I have written about that before if anyone wants to revisit that part of my journey, but what I haven’t directly said is this: once I had exhausted every resource I had accumulated over a lifetime (which wasn’t much), after I had asked everyone I knew for help and they all declined, after I had failed to cure myself of an incurable disease, I knew what was coming for me because I had spent my entire life trying to avoid it.

My experience as a benefits attorney only underscored what I already knew, which is that there is nothing there to catch most people when they fall, and there is no bottom to the abuse and neglect one will suffer, and literally endless opportunities to be victimized, once anyone, especially an unresourced, unsupported female, is no longer able to control her outcomes and sick women can no longer reliably control their outcomes.  I knew the benefits system would be inaccessible or inadequate, I knew I would be abused and neglected by doctors if I let them, I knew I could end up sick and homeless at the same time, I knew I could end up sick and homeless and raped and pregnant at the same time if there was nothing I could do to stop it, and I knew that once I got sick there was, in fact, little or nothing I could do to stop it.  I knew there would be no end to my suffering as a sick woman under capitalism and patriarchy.

I saw this coming a mile out, and to avoid that outcome I knew I didn’t want and knew I couldn’t handle (and shouldn’t be expected to) and to fulfill a lifelong promise I had made to myself to never “allow” myself to be victimized in this way, I attempted suicide.  4 times.   Four fucking times I took action against myself that was so incompatible with life that by all rights I should have died at least once if not every time but I didn’t die.  Each time I woke to this nightmare that won’t end and I had to go on, dealing with the same shit and with the same hideous constraints only even more sick and even more traumatized than I was before if that was even possible.  And it is possible, isn’t it — it is bottomless.  There is no end, there is absolutely no end to how bad this can and will get for me and for everyone in my position.

And to be clear, I started this blog after what ended up being my final (well, most recent) suicide attempt which was 2 years ago by now.  Get it?  Every single post on this blog was written after that and therefore was very nearly not written at all.  What I am documenting here, I think, is a fairly common experience that is almost always lost to time and tragedy: what it’s actually like to be this seriously, hopelessly ill, how “the system” works against sick people and sick women at every turn, and what it really looks like to have no options.  And while this surely happens all the time, every force in the universe, it seems, is working against most people actually knowing about it.  In fact, the most relateable thing I’ve ever read, the only thing that I have ever seen address these points and describe an experience nearly identical to my own was left behind by an activist/writer/seriously chronically ill woman in a suicide note.  I wrote about that woman, Anne Örtegren, and her suicide note here.  

In my own case, and this is the only reason you are hearing about it, I happened to be a seasoned researcher and writer with a specialized interest in dissecting the insane system of patriarchy, I had a preexisting platform on which to advertise this project and an audience that was open to hearing about it, and despite my best intentions and efforts, and those of everyone and everything else for that matter, where those intentions and efforts were not compatible with life, my life, I didn’t fucking die.  Not yet anyway.  I suspect that many women who experience what I and Anne Örtegren and others have experienced go down for the third and final time before anyone even hears them scream.  And if any of this sounds a little crazy to you, that’s only because it is.  It is completely, completely insane.

[gncrevan]

i said i'd make this its own post; so anyway some thoughts i would like you to consider when judging @skagra3482 's fundraiser/condition:

what stands out to me is that nobody ever produces conclusive evidence that angie is scamming. all you have is some doubts and rumours that have been addressed by her before. you’re absolutely correct that she has been raising funds for a long time, yet somehow nobody has been able to find any evidence she is a fake. it hasn’t turned out that she used someone else’s pictures, no relative or friend has come out to say her story isn’t real (in fact everyone who has come forward as having been in contact with her personally or knowing her outside tumblr has corroborated it!), nobody has found a secret blog or other social media account of hers where she’s telling a different story, all “holes” that have been claimed to exist in her narrative are either based on misunderstandings (like different diagnoses for the same symptoms meaning she’s lying) or are simply bogus (like every person on the internet with her name is her). so honestly she would have to be a really fucking good scammer and catfish, in which case she would also be more than able to avoid any of the things you criticize her for. if she is a scammer, that means she’s too clever to be found out for literal years, but if you are able to “expose” her based on her own posts that means she’s too dumb not to make obvious mistakes. you really have to pick one of the two

you all expect her to do ridiculous things like produce content or sell things when she is barely able to move, set up a live stream/youtube or go on television when she has been stalked and harassed and doesn’t deserve to have her privacy invaded like that, not to mention she cannot be expected to do the amount of work necessary for proper videos in her physical state. being disabled and poor and dependent on donations doesn’t suddenly mean people do not have a right to privacy anymore. would you like to turn yourself into a zoo exhibit? it’s humiliating and dehumanizing to show others how bad you’re doing. i wouldn’t go online and share videos or photos of myself during a flare, when i can’t wash myself properly, when my flat is a mess, when i feel disgusting. it’s absolutely vile to demand that angie should do this, especially considering you could still claim the material is fabricated. who stops anyone from making their flat a mess, making themself look a mess, lying down in bed and filming that? are you expecting her to show how she’s being cleaned or something similarly humiliating and invasive? seriously.

i don’t know if none of you ever had a family member or friend who needed round-the-clock care, but i did, and it’s expensive. i live in germany, which has a social security and health insurance system far far superior to that of australia, but even here barely anyone can afford in-home care. the only way to get it at least partly financed through insurance is by going through a lot of bureaucracy to apply for a certain level of care (Pflegestufe), but it’s incredibly hard to prove you need it. my grandma was unable to dress herself, go to the toilet, shower on her own, get out of bed on her own, walk more than a few steps, and was completely disoriented and a potential harm to herself due to dementia, as well as suffering constant neurological pain much like CRPS, but we never got her to the level of care where all her disability expenses were covered. nobody paid for travel to or from doctors, we still had to pay most of the fee for the nursing home she stayed at. why? because she sometimes had a good moment when the investigating people from the insurance visited, or because they simply thought she was exaggerating. we tried for years. her entire retirement fund was spent on the care, and her children still had to pay a lot more, and my mum drove her to doctors on her own charge. do you know what happens to people like my grandma who don’t have any kin to do these things for them? they die. they deteriorate and die. they might be lucky enough to go to the hospital and then die in a clean bed at least. there’s no fucking safety net if you don’t have a family or friends who pay for your care/take care of you themselves.

speaking of nursing homes: they are under-funded and under-staffed and over-crowded. the home my grandma was at had really nice nurses, but they couldn’t take care of a single patient all the time. so when the dementia became bad, and the pain was bearable for her, my grandma would undress herself and sit in the cold for hours. she would defecate in her bed because nobody took her to the toilet in time. this is not a worst-case scenario, because at least my mum visited her frequently and the nurses did check on her when they could. but there have been cases of homes leaving patients alone for days, not feeding them, giving them the wrong medicine or too much or too little or not giving them any when they needed it, physical and sexual abuse of patients, the list is long. this happens all the time. i know many people who work in healthcare and they all can tell you about such things happening. considering the amount of bad experiences and medical abuse angie has already endured, and that homes aren’t automatically equipped to deal with cases like hers, and that it would mean giving up the limited independence she has, and that there isn’t anybody who could fight on her behalf if the home does anything wrong, it is absolutely not an option for her. that is why she needs her own disability-appropriate housing and private care.

i’m multiply disabled myself, and there are so many hoops you have to jump through to get what you need, and so much help you need. i cannot imagine how i would survive without the help provided by my mother and boyfriend, especially when i have a medical emergency or a flare. it took years of worsening symptoms and months of being almost bed-bound until i even got a diagnosis and started treatment. at first i had to pay for some of my medicine out of pocket which amounted to several hundred euros in only a couple of months. i am incredibly privileged and fortunate to live somewhere with pretty good health insurance which covers all my meds by now, so i only have to pay for my supplements and whatever devices i need to make my life easier. i am also forever thankful and in debt to the people supporting me financially, socially, medically, legally. without that, i doubt i would be able to work and do my apprenticeship. and, like, my physical illness is a lot less debilitating than angie’s, but if i didn’t have health insurance and social security and people helping me privately, i’d be in immense debt and under a lot of stress that would aggravate my condition and make me deteriorate, and i wouldn’t know how to survive in the long term. so yeah, angie’s situation is absolutely dire, and the problem with any long-term condition is that you have to deal with it all your life and you don’t stop needing help and care and money. like, sorry, but i cannot imagine that anyone who is intimately familiar with the consequences of being severely and constantly disabled would think her claims don’t add up. they unfortunately are absolutely consistent with my own experiences and cases i know first-hand.

[donatomacchi]

Waking up to a Dream

Wednesday, March 1st (2034)

 I can feel the breeze rushing through my hair. The sand curling up in between my toes, the lighthouse to my left and the most amazing sunset I have seen in years. Its chili out, and the kids aren’t wearing their sweatshirts. I go out to the car, parked in the turnpike, grab them sweatshirts and run back before the catch a cold. As I am approaching the division between sand and concrete, I look up and see her. Look at her, she leaves me breathless every time I glance at her. They run in circles, laughing as little Mischa stumbles upon her feet, there is a certain beauty in all of this. I pause for a moment and I admire the beauty of the family I have come to build with Letitcia. 4 beautiful kids, two are twins, and a great life for each and every one of them. Since we started talking about having kids, Letitcia and I agreed on many things, but most importantly, we agreed on raising them in a home where strong values are to prevail. As I see them now, we have done quite well. Celena is loving, and very straight forward, as smart as they come, but as sensitive as her father. Vincent and Sai have so much in common, but they are so different when it comes down to personal relationships, none of them are wrong about the way they like to approach human interaction, but they just like it different, one of them being very dependent of what people feel like and the other not caring about what they may say, just like his mom. Lastly there is little Mischa, she has the greatest heart I have ever seen. She is gentle, understanding and no matter what day it is, she will always give you a hug that will run chills down your spine. They all are what I wanted since I was young, as I imagined them. But nothing or no one can compare to the one who has made this come true. Lu is the reason I am standing here, watching the sunset as my family runs around like Native Americans in a religious ceremony. Nothing could’ve been possible without her. She is so amazingly thoughtful and thankful for everything I give her, and it only makes me want to give her more. Once I thought I had too much love to give, but since I met here, it has run out, there is no quantity humanly possible that would surmount the love she deserves. And you know what is so amazing about giving my heart and my soul to her every day? She gives it right back, making the love between us too much to even understand. Do you know what else I love about her? She has this motivation to achieve everything she puts her mind to. She is just amazingly inspired by herself, it is inspiring to even look at her go! Living with her has made me so much stronger than I ever thought I could become. It’s not only what she is, but what she has made out of me, and consequently what I have made off of her. We just share something so big, so powerful, it makes me want to cry and be grateful for her. Even though I could pile up stacks of love-filled papers, explaining how amazing life has come out to be, it will never be enough. And as I walk on to them, they see me and invite me over to join the wonderful dance of joy they are performing as the sun meets the ocean. I cover the kids up, and I start to run around them, having the greatest time we will ever have together. Nothing else matters at that exact moment, my life is completely as I dreamed it would be.

Even though, for me, my family is the center part of my life, there are other things I have become, other things I have achieved. Starting off, I have become a human being to be proud of. I know some part of it I owe to Lu, because let’s face it, no one is perfect. But, I have grown up to become so amazingly smart and wise, it has given me an insight about life itself. Life has become a joyful ride, filled with amazing emotions. I have been able to express myself completely through art, literary and painted art. I never knew I had it in me until I started painting and writing. Those strong driven images splashed into the canvases and harsh, hard-hitting words sealed into the pages of my multiple books/commentaries. All of those master-pieces (in my eyes), have inspired many. Making it possible for me to achieve one of my life’s dreams: transmit my thoughts, my experiences, my wrongs, my rights and my teachings to others. As I grew up I knew I had a special understanding of life, and since I can remember I always wanted to share it with others, to inspire them to grow and understand, to make them open their eyes and see that there were bigger things in life than what they thought. Later I understood that people like me weren’t meant to be found in every street corner. We were special, and that motivated me to expand my teachings farther and farther, so that one day, the small bunch of privileged people, whom of which would come to understand what I see through my eyes, would read or see the master-pieces I developed. Now, I can say I have reached out to many of them, and poked their brains into questioning and growing without pause. I hope most of them received the inspiration they needed to aspire for greatness. I know I did, and my inspiration came from two things primarily, none of which would have I ever realized without deep thought and hard nights of brain-poking.

I set out to be a doctor early on, since I was 11 I would tell my father I would change people’s lives through medicine. I watched medicine-filled TV shows and I would awe in amazement of how amazingly perfect the human body is. As I grew up, my dream of being a doctor became more real than I thought it would be, I started attending different types of surgeries with my father’s distant cousin. Until one day, I started med school. Everything was going fine and well, but as I attended the multiple med courses, I started realizing that medicine wasn’t the end game. Medicine was just the band-wagon I jumped into to get where I really wanted to be: helping. I grew tired of medicine and I decided to drop out of med school in search of something else. Helping can be done in multiple types of ways, and I had to find a way to achieve it, but not giving my life away for it. I jumped into engineering, I chose something broad enough to give me time to realize how the hell I was going to help out and earn a living. I jumped from one job to another, going through textile factories, banks and construction developers. Until one day, life opened up a door, and when I looked inside, there was the answer. I was going to develop a health insurance company with its own health institutions. I was big, but look at me now. MDMZ has become the biggest and most accessible health insurance agency in Latin America. We gave the middle class in Mexico and option to buy for themselves private health-care. It is my life’s work. It has given me the ability to grow personally, the way I wanted since I can remember, helping people out through medicine, and making me wealthier than I had ever imagined. But, even though wealth has come my way, and it has bought my family luxuries beyond imagination, it is by far the smallest achievement I am proud of. Many of it is given away to charity, donations and help, which is another way I have found to help people out. But anyway, life has been sweet to me professionally, making it easy for me to leave something behind in this world where my name can be held up high and known to everyone for the amazing gestures I have procured. I can say, I have touched people’s lives. All of this, as I said before has given me back a sense of achievement which has made me a healthy person. I can say that my health is at its peak, psychologically and physically. I rip the benefits of being a healthy person, every day I wake up and shoot some hoops with the boys, and I thank my healthy life style since I was young. Socially, I can say that it doesn’t matter if people come and go in my life, because they do. I am reminded of my mother, she would change of cliques by the minute. But generally it doesn’t matter, because going back to what I just wrote a few minutes back, I have Letitcia in my life. If I wake up next to her every day, there is no one I need to be around. She is the captain of my boat, even if it means it is a ghost ship.  

Well, being able to write down everything I just looked back into, is a blessing to me. I am forever grateful for everything even if it is not written in this text. Not to forget my parents and my brothers, my cousins and my friends. Every single aspect of my life I am grateful for, and I express it to g-d every day I wake up. But, it doesn’t stop here, I am just turning 40! Life will go on and I will look back at this moment in 50 years and think to myself how I grew exponentially. I will look at my kids and my grandkids and again be grateful to life. Because life is a wonderful ride, if you hop on the right wagon.

 Thursday, March 20th (2017)

(Alarm beeps)

My g-d. What a dream.

Did I just… wait?

My wall holds up a sign that says “wake up, it’s here”. Is it referring to…to my dream? Is it possible? Wow, I wish it is fucking possible. I just have to grab it, just take it and believe. I saw this movie yesterday, it gave me a secret. It said to believe, visualize, and feel good. I do, don’t I? I’m kind of having a hard time doing so. Wait, Letitcia was in my dream? Really? I just started dating her. She looked beautiful though, in that beach. I could imagine getting hitched to her, but wow, kind of early. You know what, let me stop right there. Am I questioning my ability to fulfil my dreams? No way. I will not throw this away. Let me embrace it! Yes! It’s there! I mean, it’s here! Let’s take it. Feel good? I can fucking do that, there is no reason I shouldn’t. Visualize? I mean my mind is a fucking movie, I visualize all right. Believe?? Believe? I kind of have a hard time believing I suppose. But why shouldn’t I? Believing isn’t that hard, it’s just buying a ticket to the movie your mind is playing. I sure can, I absolutely can believe. Let me get one of those tickets, in fact, let me buy the whole lot.

I sit back, the theater is silent. I place the popcorn on my side (don’t forget the jalapeños), put my glasses on, and it starts. The movie of my life.