Drained (Trigger Warning)

Somedays I feel like renaming this blog to Trigger Warning. The thing is anything can trigger anyone and I seem to be living the kind of life that horror movies are made of. That or life time originals. I have not given up, I needed to write that out so I could keep going. I had a melt down on the phone with the service coordinator from my insurance and she got it. I literally cannot do it on my own. So that was actual progress. Broken wheelchair and I dragged across town with a driver for medical transport that understood freezing temperatures are bad for people, and I have the piece of paper that enables me to have my pain meds. I just have to get to the costco now. Monday. Supposedly that is the day I start having carers again though I meet the woman tomorrow.

Selena still needs a new home, I realized today I failed to give her the meds she needs for over a week. Sprite too. How did I get reminded? They broke into various states of reaction. They are medicated and accomodated that but she still needs a new home because I cannot do this. I nearly passed out getting them in her today and that is not acceptable. I am fighting for food, right now I found a bag of chips and that is dinner today. My house smells of rotting dishes because of course, I have to eat. So that means the few prepared meals I had make a nasty odor. It makes me queasy. So my window is open. Its a spiral.

On top of this I did get good news. I am to go to the section eight office, after years of waiting on the priority listing I finally got in. Watching all these people around me get it has been torture since many waited less time. I am not sure what is wrong with MY application to be treated differently but I held out. The system is so fucking broken. Five to seven years? I lost track now. I keep realizing thatlast year was six yeears this yeaer is seven for a lot. Those fucking typos stay. Fucking typos badges of honor for being this coherent in my actual condition.

I found the misplaced house keys and got my mail, which held a lot of bills as always, including my internet bill which is somehow twice as much as it should be. So I tell the billing people I have very few minutes left and they try to argue with me about how I have to pay it to get my correct sum next month. That is entirely what someone with ten minutes left to deal with that situation wants to hear, “We made a mistake but because we at Century Link have the worst service ever we are not going to tell you we offer low income plans at all and will tell you directly after you explain you are on SSI that you must give up a third of your income to us. So sorry we do not value you as a person at all.” I never got to cancel my account because I hit the limit and my voice became melt down screams. I did hang up but fuck. That was a preventable melt down. Why is it so hard for these corporations to treat people as ACTUAL HUMAN BEINGS?

 

Oh right…

 

I forget I have no societal value. Art is not worth it to society. Individuals yes but as a whole? No. Disability. Nope. Lets skip the list of my supposed flaws. Bisexual disabled artistic cripple singing ragers do not get nice things. I do not get to have clothing to wear because the super smiley ladies said so at HEritage. Just fucked over. I wanted this to be a great update with great progress but I cannot FEEL that. I am either numb or screaming. I choose numb. Itis much easier on my physical pain. I am a raw nerve ending.

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Why Disabled People Want to Die (Trigger Warning)

I am sitting in a chair that gives me pressure sores, unable to sit right without dislocating my spine. Why? My wheelchair is broken. Why? A transport company decided that the minimum standard by federal law was just a guideline to be ignored. ARe they going to pay for it? Nope. I do. I pay for it in pressure sores and pain. I have had no pain meds for a month. No other meds for longer. I am caught in a tortured moment with no bathing, possibly no food, no carer, and I am told that I can always go into a nursing home. Where no one can meet my needs, so I get to suffer publically. There is no quiet space. There is no safe space. My crime? Being disabled and not backing down on having my needs met. I want to give up. That means I want to die. I would rather not though. Death means I do not have to call anyone else, the pain in my body stops, and I can breathe. It means I do not have to worry about the blood draws I cannot get done because there is no way to the lab. It means I do not have to worry about what happens to the cats because I do not exist therefore worry and pain cease.

Carer agencies like the ones I have dealt with for the last few months who jerk people around, let failgivers destroy their laundry and give the option of no recompense and thus nothing to wear or no care and still no compensation are why people want to die. The entire debate about assisted suicide and what merits the right to die? I see it falling along these lines more than it ever has about the actual medical aspect andpain aspect. Do I have to suffer? Yes. I am poor so I do. If I was ab le to do private pay, if I was able to actually do things and just wanted a carer, if I was able to walk, if I was able to shower, if I was able… I would not. I however get to live in a world where every breath makes me cry. Where crying makes my eyes bleed and where that scares people so they quit. Where I am not valuable because of autism, brain injury, spinal cord injury, Ehlers danlos syndrome, seizures and allergies. The allergies are as criminal to people as autism. After all its not serious, I could only die. How dare I make them not wear perfume feeling naked to the world, exposed because I do not let them conform as I require air. How dare I breathe.

This is a strong and constant message. It has been omnipresent in my life since birth. My parents? I had to serve and obey. Every time they saw a disabled person I was told I must never become ill because those people a re trash. The horror when I stopped trying to find a job and “let myself become homeless” was palpable. When I applied for disability I was told I just wanted easy money. That seems to be the definition of disability in the minds of those who are not. Its easy. I just sit here all day eating or sleeping with someone to bathe me so I have nothing to do. Except fight for care, go to the doctor enough that it is a full time job, and try to get my needs met. I sleep four hours a night, interrupted. I feel agony even WITH pain meds. Yet disability is easy. Really it is, you just at least every three years explain to a stranger why a payment so far below standard of living in the country you live in is something you deserve. If you fail? Fuck you. You must admit you are scum, worthless. Show them how little you own. How few peopl el;ike you.

The media is no better. An able bodied actor plays a wheelchair bound, yes BOUND because no person in a wheelchair is set free by being able to move. We are tethered and pitied. Its rarely a truly disabled person. Even then its a more able person than the disability level often. BReaking Bad’s kid with Cerebral Palsy? Actually has it but is not so bad he needs crutches and had to learn. Still, he got the job not an able bodied person unlike in Glee, every oscar winning pity party ever. No they never tell a story like mine on TV because I am the exact wrong disabled person. I inspire people by fighting constantly for basic rights. I do not just accept my lot. I do not over come. I deal with it. I adapt. I do not aspire to walk again. Walking hurts. Fuck it. I can actually walk three steps. Good enough. Yet because that is not my life goal, because I will not endure nearly fatal reactions MORE than I already HAVE TO¬† I do not get care.

The answer by Medicaid? Keep calling places. Who pays for the extra minutes since I have used three months of them and have fried my brain daily trying to get my needs met? Oh wait… me. Somehow. Who pays for the lost clothing? Me. Who pays for spoiled food? Me. Who pays for the missed medicines, missed meals, and being in pain? Me. Who pays for THEIR perfume wearing? Me. Yet I am the bad guy because I cannot just get rid of my cats. Selena’s plight makes it obvious no one wants cats with special needs anyway. I am the social black cat, unwanted, undesired and hated.

No this is not a rant saying everyone hates me. It is a truth telling stating that the average person who sees me is afraid. I am a bald woman, I am fat, I am visibly ill. How dare I remind them of their fucking mortality. I am surrounded online by people who are above that. I wouldnot survive without them. Yet I must choose to give up my home or my carer. I am being forced to give up and die or give up the things that actually make all this pain almost worth it. ALMOST. I am sorry but no amount of love is worth suffering.

I want to die. I am pissed as hell that I want to die. A standard in the medical field ANYWHERE but New Mexico? No perfumes and scented products. Not here. Here this is treated like I am violating people, like I am beating them. I have been beaten, I have been violated, but I am the violator because I am disabled.

Ambercare, Heritage and the Lie

I realized I do not have to be professional. These agencies certainly have not been as far as office staff. I have no experience with Ambercare’s staff at all but Heritage… I just had their office manager leave my house after informing me how Heritage is already failing their clients with allergies. I was offered very unclear platitudes that boil down to, “I am a horrible person working for a company that says it values its reputation and seems unaware we are notorious for poor service.” I chose them out of desperation not choice. My thirty hour allotment made her wince, because I am to think of the poor carer who needs more hours to make ends meet. I am to feel bad that she feels vulnerable without slathering on perfume and other body odor enhancers. I am to feel guilty for having needs that do not conform to easy and basic.

That is why I am posting this. Heritage in New Mexico, sucks. A company that claims they will serve you and lets you wait for a week, while one of their carers destroys your waredrobe is very unaware of how reality works. See this handy tool the internet? I don’t have to be calm. I can write a post while frustrated, angry and betrayed. There was no reason to get me up early to accommodate their schedule for something that could have been done with a phone call, without the bullshit excuses, and the fact she admits they are not meeting the needs of their other clients? Epic fail. I should have recorded it.

 

My experience with their helping hands division has been wonderful. Don’t get me wrong, I am pissed as hell about the laundry but the adult protective services three hours a day, not nearly enough to do more than survive on, has had me meet a variety of competent staff. There have been no cucumberings, a few questionable smells but I dealt with the itch, as I could tell they tried and it was not enough to fuck with my breathing. Yet Ambercare did the same thing. Heritage too. I do not get to pick my needs. If I did you would not HAVE jobs. At all. I am sorry my assessment was so blunt, except that nope. You failed. Miserably. Ambercare at least just called. You invaded my HOUSE. Your attempt at scent free was a failure. Your outfit hardly work appropriate.

 

I have done your job. I know it is not easy but telling me there is a carer shortage and its just too hard is a bitch move. Heritage? You are a bitch. Ambercare? You are a slightly less bitchy bitch. The people who work for you must feel shame, trapped. You have a carer shortage because people go elsewhere. No wonder people shuddered in horror when I admitted to giving you all a try.

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