The Time I Got Naked on the Internet (NSFW and Trigger Warning)

I rarely do these page break things but the truth is I am naked in this post. I mean literally naked and bearing my soul.

I have been blogging about the neglect I have dealt with for over a month. No one took credit for this mess. The people supposed to help me often asked why I didn’t just do things that I could not do and I had to point out that even calling once is hard with my disability and the worse things get the less a voice I have. I had to remind them that what I seemed to need to do was magically not be disabled to be okay. I have been in pain for over a month. I let a woman I know just from the internet take my EBT card and my pain meds script because she was willing to relieve my pain unlike the people who were forcing me into danger. She rescued me from the risk of dehydration and she even pointed out that no she needed to buy at least a little food for me to eat because I had nothing but spoiled things or frozen things. This woman is awesome. Her name is Heather and I talked about her extensively in my post where I wrote to Mattel and had no idea how to send the letter.

I have had Facebook support, which is an extensive thing. People from around the world wishing they were one step closer so they could protect me. I have had my laundry stolen, after being humiliated and treated like an imposition. Every agency except Heart to Home, the place that actually got someone in today but had to wait for the paperwork that got apparently LOST between El Mirador, Premiere, Heritage and Blue Cross Salud. For two hours. I find I cannot believe she will really come back tomorrow. I have been treated as if my agony is just a normal thing. Not every person on the other end of the torture device called the phone treated me badly. The coordinator at Blue Cross Blue Shield really did seem to try even if she kept going, “Well just make one more call.” I was driven to tears on the phone countless times meaning that my reaction to water happened and more pain.

I am not sure if this constitutes torture or not but I vote yes. In the two hours I was given today the bathroom was cleaned. No more skin stuck to the toilet right? Well no that is a daily thing but to have it build up that way and to have so much filth around me is traumatic. I was trapped in this house for over a month. This mirrors for me a lot of the torment my exhusband brought upon me which made me so dependent on a carer where I was tortured and locked in a single room. I counted the cat food down, started rationing it a bit and carried glasses of water to the living room and stood and poured praying I hit the bowl. I got really good at that. I ate one frozen thing or a potato a day. I lived off of Amy’s brand gluten free burritos. I could afford five and that was all I ate for the last week. Some expired Dinty Moore Beef stew that I could get open. I ate around the allergens as best I could.

No one could help me without a single sheet of paper. Does Medicaid not use a computer? Does medicaid not own a copy machine? The excuse that this single piece of paper was lost and so I had to fight for my life daily against my needs and pray I did not fall so badly I could not get up is ridiculous. A single day is ridiculous. How many people died this year if they were losing those oh so vital sheets of paper because they could not call for help?

Here is how I allot the crimes per agency.

El Mirador: Started this entire process by having their office staff not make a single phone call to check my authorization. Illegally they waited until two days after the first to notify me and my carer Mariah then she should not have worked for two days. Not only does she not have a time machine but without those two days I would have had no liquids that first week or food. We had some issues in the last few months but nothing prepared me for this turn into stupidity. I actually thought the agency was still good and we just had a few things to work out. I even had asked if they wanted me to begin a transfer, and was told NO. Instead of going “Yes, that is what we want from you,” like mature adults they risked my life.

Adult Protective Services: Did great. They got me care right off when I called. Until they were lied to and did not actually ever check up on me again. The last bit is the only reason they are listed here. Any time an adult in the US is suffering from neglect, abuse or exploitation they need to call in. That is what they are here for.

Heritage: Every time I spoke to them they proclaimed their reputation. From my end as a  client the reputation they have is pretty shitty. Honestly their vaunted reputation is as an over priced agency that has no idea what the client needs and ignores them. I never would have considered trying them except Adult Protective Services paid for three hours a day. Not enough when I had five a day but I was not complaining. After Premiere (see below) denied me Heritage decided to go on the wheel of crazy. I have recorded phone calls where they admit full neglect on the part of their carer who lost every skirt, pant and dress I own leaving me naked and dirty then acted like it was no big deal when I was exposed as a direct result of that to serious allergens. Its no big deal because they had no intention of taking me as a client when I submitted to them after Premiere had their manager go nuts. Their vaunted reputation came up a lot more when I had issues. With no issues things were really good but realistically that does not last there is always some kind of problem. I also had carers tell me I was getting one hour or two hours to get stuff done in OFTEN. Not every carer did that but I was an imposition to them and thus they would grant me the hour. They lied to adult protective services saying I had been transferred and they received paperwork. They later told Blue Cross they had no records of me as a client, because apparently they did not write this stuff down. I am going to find a lawyer and sue them but that takes time, energy, not starving to death and getting rather nasty skin infections in my own home. Oh and they told agencies who called them that I made their people sit outside, which is true, but I was accommodating their perfume on a seventy degree day to get my needs met and asked if they wanted to come back later instead. Every damned call before people come I WARN them about my allergies. So Ambercare, an agency that maybe would have worked out and stalled all this drama out was not comfortable taking me because their people might sit outside on a very warm day in winter.

Premiere:  Our interactions were pretty short and meaningless. I explained my extensive needs on the phone and I was assured that, this being the medical industry, people not wearing fabric softener, perfumes and other items that could literally cause me to suffocate would not be an issue. We set up a meeting to sign paperwork and the manager comes at nine Am. This hour is a struggle for me due to the limitations of my body and sleep so I gave up a night of rest because, if I had full time hours it would be great! I could do this once. The manager came in wearing thigh high boots and generally weird things. I guess it is fashionable but it just struck me as odd. Then, she sat me down and told me how my very needs and the reasons I need a carer are just too hard and made her uncomfortable. Being without perfume was so hard she even had her deodorant and perfume in the car. So because she has some serious whack job issues I did not get care and was rejected mid transfer. She couldn’t have just called and said “We changed our minds”. Nope she came all the way down here I guess to see my annoyed, “Then why are you in my house get out” face. I did have to actually suggest she just leave if we were not signing papers. This concept was lost on her. Yes I am implying she was vapid.

Blue Cross: I had great phone responses, the person I worked with clearly was trying though the hard part for her was that no I cannot call a dozen agencies, buy minutes six times in a month and be okay. I have shouted at her a few times because of those suggestions and the pain at even the thought. I do not think its their fault. They seem to have had the WORST transition possible from Amerigroup as far as paperwork and even sent me blank, misprinted and generally wrong insurance cards. i still have yet to get my correct one. I find that sort of hilarious.  Every day we spoke, a few days of not speaking are probable because I lost track of time. The people in the advocacy office really did say all the right things and failed to hide growing frustrations. There was shock when i went “Guys where is my damned transfer” two weeks ago. Shock again last week. Why wasn’t it done? They never asked ME that but instead said they would find out. As much as they seem to be taking the bullet on this stuff via the claim of a single lost piece of paper being at fault I don’t think so. I am pretty sure it was the assholes above. I could be wrong.

So on all this stuff no progress occurred until I went “Fuck it, I am calling Larry Barker.” I told them I was going to, then told them I did. I have yet to hear back from Mr.Investigative Reporter New Mexico. I guess I may never.

Here it is. I am naked.

Here is my house. This is with some help or it would be worse. Remember, people drove from another city (Dominique) and then strangers off of the internet also helped but there was so much they could do. I had days when I am not sure I could ahve opened the door at all just from stress.

5 Comments

  1. Sounds like the movie “Crippled”

  2. Glad you finally got this nightmare straightened out. Sorry you had to endure it. Shame on El Mirador most of all.

  3. Sumiko, you’re mistaken. The nightmare has not been straightened out. This is a serious situation.

  4. Its closer but no it is not yet resolved.

  5. I have no idea what that film is, from googling and trying to find it to comprehend your reference I found some yet to be released movie that sounds like either disability shaming about to happen in vying for an oscar or some sob story with a happy ending for an oscar. This is reality. I get no oscar for living it. I get no help except from people who have heard about or seen these videos STILL and frankly, the movies never get it right. They make it out like the desperation is all the fault of the disabled person for becoming disabled.


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