A Question (Trigger Warning)

So today the carer I had yesterday and was hoping to blog about when she actually returned filed a complaint. You see I had no clean clothes left and I asked her if I could just get naked and send stuff with her. I actually left underwear on and she said this was fine but reported that I was being sexual while nude and she was uncomfortable. I am left in the dark here because nothing I said or did was intended to be sexual and I cannot figure it out. When trying to figure out what was going on the Blue Cross people and insurance people both told me different things, and after hours of processing while riding the bus to try and deal with Section 8 I was left asking… Why am I being expected to perform as well as an able bodied, able brained person? That is the real jist of the issue as I see it.

I do not think anyone failed or is out to get me out of malice. I do however think the system is broken. There is a clear cut expectation that if someone does not do their job I can just pick up the phone, call my mother and viola. It is all fixed. Except that my mother would probably kill me or in some other way cause me harm, lives in another state and the people who I have been relying on are friends of friends or friends from the internet. My nudity was a solution to the quandry of having enough things to wear to get to the end of the week, given the loss/theft of my laundry. I was asked why I did not just buy more since I have SSI. Apparently Blue Cross has no idea how much that is. I left a very snarly shouty voice mail trying to communicate this. A mistake. Though I cannot apologize to them for it because I am not sorry that I had a melt down when I have been pushing myself to survive their broken system. My SSI just got raised ti 720 a month. REnt is 420. Electric is between 30-120 dollars depending on the season. Internet is supposedly affordable but Century Link is trying to force me to pay 80 dollars rounded up for my one luxury. (Long story short: WORST COMPANY EVER). After that I have my 150 in foodstamps that must cover the things I drink to get around water, food and is about to be cut. SO I often have to fit cat meds, laundry and enough liquids to not die in. After that there is the need for transport fees as the bus costs money and apparently caregivers are no longer allowed to do things like errands etc. I am waiting to blog that bit until I have it in writing and can process that in a manner that does not leave me with a terrible headache and stabbing sensation from trying to communicate in a way that does NOT work for my brain.  I saved thirty dollars over three months to get a skirt that I NEVER got back. I spent money on laundry I had to rewash to get to wear. I am supposed to magically replace the gifts my friends have given me that allow me to protect my head from the sun and feel pretty. In all that.

I am asked too why I didn’t just send her in two trips for laundry. Funny thing. I didn’t think of it. Neither did she. Apparently she did not quit, according to Blue Cross. She did according to Heart to Home. I feel a bit bad for Heart to Home as they ARE trying but I am out of my ability to communicate. I am past my ability to function. My thirty hours allow for people to cook, clean, aide me in bathing, help me with errands such as groceries and medicine, remind me to take my meds, help me dress, and a variety of other things. I have had a woman who could not figure out the stove, and forgot her time sheet. Its by my front door. I have had weeks of “Someone might be there tomorrow if we get that paper.” I have had “Just keep calling people, on your phone with limited minutes that you must now fit into your budget so that you do not die. Ahaha you wanted to pay bills. SO funny!” I have had “We are trying.” The one thing I have had that I do not believe is, “I understand.” No people at Blue Cross and Heart to Home. If you understood you would stop expecting me to act like someone without autism, a brain injury, a spinal cord injury, ehlers danlos syndrome and who DOES NEED HELP. You want me to NOT need your services, because that is how you are acting. That is not what they really want since this would cost them their jobs if every disabled person just healed.

So if they understand it, why after 35 days of not knowing whic way to turn, pushing to get things done by myself even when it causes me injury, eating just junk food and rationing that since junk food costs money, making more calls than I can cope with every single day am I supposed to think AT ALL much less have the brilliant comprehension of someone’s unspoken discomfort. How exactly does that work?

How also am I to feel sexual when I am in so much agony, passing fist sized clots that the doctors cannot figure out or fix, with no medication for most of that time and barely being able to see straight? I am sorry your failgiver, because yes someone who does the two faced dance of “No its fine, let me report you” no matter how skilled IS a failgiver was uncomfortable. I get you want to convince her to go back but I cannot trust her now. I have to presume people tell me the truth because I cannot tell. I tried really hard to say all this before going out into the land of PTSD triggers and riding the bus where I was verbally assaulted, sat on by someone who was a greater biohazard than my bathroom and sensoraly assaulted as well as exposed to allergens. How am I supposed to perform normal when i cannot manage that WITH AIDE, to get AIDE.

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