Words (Trigger Warning)

Right now I am marking all of the posts as trigger warnings right off before I write them as its all triggering. The bondage of silence is a trigger for people, the abject pain, the endlessness. There was no call from the agency today. Just like with the failgiver from yesterday calling in to them Heart to Home felt that I did not need to know. Just like they do not need to provide care but I can somehow do it all. I find it hard to push on at all and last night I did go to the ER. I couldn’t even call for myself I needed to get help from someone on facebook to get help. I am just glad I could ask.  That is the clearest thing in all of this. The only reason I am not dead is because I CAN log in to the internet. I CAN get help. It may not be the superman style rescue that I think just about everyone in this situation wishes for but the effect is better. Often the physics of a superman rescue would be actually deadly anyway and the goal is to live.

Pizza 9 donated food, Rebecca from one of the EDS support groups helped me get care, Linn helped me coordinate people local to me. Heather helped me get pain meds. Michelle helped me get more food. J donated more phone minutes. When I see the picture of the moment, as words for me start out as a still image I must describe theree are hands reaching for mine as my fingers are dug into the cliff edge. The rock is hard, it has cut my hands and I am about to fall but They will try to help me up. THat list is also a SHORT list of people helping and not at all entirely full. I cannot list everyone, some people would not want to be listed but I wanted to show the reverberations of impact. Mentally I would have given up a few days ago without the reaching hands. Normally that scenario would be scary as I hate touch even in my imagination. Even internet hugs freak me out sometimes. I still crave them but that just weirds me out too. The hands are not hands of horror either.

I just slipped into a nonverbal barely able to make sounds state and cannot do the tablet typing for making words either. Its a state I try to avoid but is a side effect of a lot of things. The ER treated me well, there is a long story with piles of amazing understanding (Lovelace Downtown Albuquerque). I had a melt down from sensory overload and something about one of the EMTs triggered PTSd at the same time. I also have had migraines my entire life and never said so. The best way to explain how the ER helped other than standard medical care (which was done with no fuss at me about the allergies just “Can we try this? ” until we figured it out) was sensory aide. The lights were off, but the door was open since I needed it open to be less freaked out. Before turning them on I was given a chance to put my beanie over my face (better than hands or closing eyes for sensory stuff) and no blood pressure cuff since it was painful and making the sensory things worse. They also asked what I needed. There was so much but that is the best “show you” statement.

They gave me some numbers to call in the hopes of a resolution to this and while those case workers could not help me one of them DID in fact make a few points clearer to me that helped. SO I budgeted the words and practiced the things to say and still bungled it. The Bluecross receptionist was possibly the most patient receptionist I have dealt with. Word salad, which is when the wrong words come out and a bit babbly, Being unable to be loud enough. It was probably clear to people on the phone I was crying. She was calm, patient and did more than I expected. Same with HER supervisor. I tried to tell them what an amazing thing she did. Being in the twixtverbal state and no hint of rushing is vital. She checked in on me while I was on hold, kept me updated on her efforts and made sure I understood she was helping without it being “SEE WE DO HELP SHOUTY SHOUTY”. Soothing, calm, professional and direct.

Her supervisor was also patient in the same way. I knew I was failing to be understood because of the disability aspects. I can type all this out because of silence. Sprite is letting me have writing time and she has confiscated the phone a few times today and turned off things. She is being a good service animal but that doesn’t mean its not frustrating. I can pause and not have a fear of the word flow ending in text form with no expectation of an answer. So I gave the URl of this blog to her supervisor. That is actually why I am posting this now and not later. I want it clear I am grateful for them doing their jobs and accomodating my needs without it being an imposition. In the last month that has not really occured much. I have instead been told over and over again to keep calling agencies. keep pushing. Except that I cannot push anymore and even then was asking for help because I couldn’t do it.

So I broke. I doubt the Heart to Home people actually read my blog when I tried the “go here. This explains what I am trying to say” method. If they did they would have read my hope and relief that someone maybe came. Now they are in the list of agencies that I feel betrayed me. I feel betrayed because I must entrust my life to these people and they are in essence executing me. I cannot go to a nursing home. I am not going to get fed, and to me a nursing home is where one goes to die of boredom and neglect. You are a prisoner. I cannot go to appointments on my own pushing my limits and hoping that around the PTSD of travel, the exposure to inevitable allergens because i am allergic to everything I remember. I cannot just live off of two bags I can lift by myself to get them onto the bus of food. Yet I am told cares do not do grocery shopping.

Over and over the needs I have are used as the reason I am not able to be helped. Medicaid and my insurance NEVER paid for this tablet. This one was a friend helping me after the car accident last year destroyed the first one, which I paid for out of pocket from a settlement for damages from the bus company (who just went “How much do you need? here is a check” no drama despite the legal terms). I set up my initial carer stuff myself. Everyone keeps going “Well use a social worker” but despite the use of different terms the Bluecross representative IS that person. So the pressure pad, the never ending wheelchair repair, the need for an inhome care nurse, the need for my carer? I am supposed to ask. I have asked. The answer was “Do it yourself.” Not in those words but “I understand your communications disability. Call anyway” is not acceptable.

I am tired. I cannot even figure out answers to how people can help at this point but I think a part of that is, being far away there is a limit to the help available. This is not an emergency money can fix. Some aspects are aided but those are akin to taking medicine to treat side effects of other medicine. Its a stopgap and not really going to cut it. I did get the section eight things started and the property manager who I really do not get along with has this month been REALLY nice. I even emailed his boss and went “Hey so this is what is up, and you should know he isn’t making it worse and actually helped.” I try to make sure people know when they do well but I am not well enough to get there. They almost kept me last night because my blood pressure is high. It was borderline enough I could leave at the end of the night but it was close. I do not want to be admitted because I do not feel safe out in the world, exposed. Agoraphobia IS disabling too. Yes I go out, I do things, I push myself but I can only compensate so much for all of the things in my internal system that do not function. There is nothing that functions correctly.

I am not giving up. I am just unable to get the prescriptions filled to help me fight the infection I cannot clean on my own. Yes I am going to when I can get Sprite off the phone and am allowed to use it text the woman who helped me with groceries or the woman who helped me with the pain meds but I shouldn’t BE in this condition. I should be saving excitedly for the Convention i want to go to in June and celebrating my section 8. If I had not made alternative plans on how to get there (bus, broken wheelchair, nintendo and starting out VERY early and staying out way too late) I would NOT have had the meeting. The twofaced failgiver could have cost me that if I had been able to trust her enough to call. I cannot trust anymore. A thousand assurances, fourty tomorrows (guestimated), plenty of “I understands” and the only real effect is other disabled folks holding out their hands and helping me hold on to the cliff longer.

Now there are no tomorrows being said just silence. Yes I am sure my upset middle of the melt down attempt to work out something for today did make it worse but that doesn’t make it bad. If they even listened to the messages or had paid a tiny bit of attention it would be clear that I was at the limit of what my brain could do. I am actually dizzy from writing this and will have to lay down now. I wanted this all said one more time. Service cats and people who either read this blog or have known me online for years have kept me alive. Bluecross Blue Shield, Heritage, Premiere, Heart to Home and the other failgiving agencies like El Mirador? Haven’t. What is most distressing to me is how Heart to Home has lied to Bluecross, Heritage LIED to adult protective services and no one believes me because… I am the vulnerable party and have nothing to gain by a lie. Nothing.

I do not benefit from any of this. Heritage does. They got paid money they should not have and they got rid of someone with needs they did not want to meet. They also admitted they neglect their clients, kept a thief on as an employee and made it clear they do not know how reptutation works. Heart to Home does. “No no, we got her groceries” sounds good. It sounds like help. Except that they didn’t DO that. Just like I do not yet get to shower. Sponge bath at the ER is it. Not actually clean. Wounds are clean but I want to clean my hair then shave it off (shaves better clean) and I just want to go to sleep, knowing that when I wake up I will prepare to let the stranger who had a background check in, my cats will be fed. i will be fed and maybe I can have enough energy to go to the zoo.

Now I have to just survive. I will not stop fighting or shouting and this isn’t just going to go away once I have care. I am going to try and find a way to change the system so this can never happen again. Yes this is directly to Bluecross and the agencies out there. It is NOT okay that I spend all my days working to help others when i can, and help myself and hear about people who died from neglect EVERY day. Its not okay. If I die it is murder. When others die from neglect it IS murder. I am averaging, to just the post about the neglect with the video 1000 hits a day. I looked at my stats and saw that. I am going to survive this so give me a happy ending. Then help me FIX the system. You all have that power. It also is great for your reputation. I like to say nice things about people. LET ME.

 

 

2 Comments

  1. Hi Kate!
    ( sorry to shorten your name)
    I just want to say how sorry I am you are going through hell to get what little help you are getting! I am new to your page and I am so happy I stumbled upon your page.
    I have been fighting for 5 yrs to get my husband on disability ( SSI). They keep dening him since he is so young (31) when we first applied. Since then he has had 2 laminectoies of his lower back L3-5 one of those was a revision. Then Neck surgery laminoplasty Graf style, basically the Dr said if he didn’t rebuild his neck he would be a quadriplegic in 6 months to a year at most!
    We have traced EDS back 4 generation on his side of the family yet the doctors won’t diagnose him with it. Oh and our 17 yr old daughter also has EDS! They both have hyper mobility too! We are now finding out that having surgery with a doctor that doesn’t know about EDS isn’t benifical to you and can cause more problems!
    He finally got approved for disability Dec2013 and we are still waiting for his first check, but so happy he was approved and we can now focus on something else for awhile!
    I understand your struggle and I know that it is going to be hard living on disability but we can do it! I wish you had better support with your family or a partner to help you consitantly. If we lived close to you I would offer our support but we are in California. I wish we had cash to donate to help in that area which I know is only a small part of your needs.
    Anyway, I love your blog! Keep your strength up and as much as possible keep toxic ppl out of your life!
    I would be very interested in emailing or FB with you for support!

  2. I actually go by Kat so you could have gone shorter. Couple of things I want to say and my brain is already going “No, no outside world” at me so I will say this. For SSI you should have your first check and theback pay. If you did direct deposit check the records, if you guys are waiting on the card, call. They no longer do paperchecks. They made a big fuss at those ofus a few years back who were holding out and did not have bank accounts. This is a federal program so that is universal.

    Keep finding new doctors. With the disability and medicare he can. It will be worth it.


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