When I Have A Bad Day At Dialysis, It Affects My Time With Rebecca

My dialysis machine-Rebecca-August 11, 2018-1

Above, is a picture of my dialysis machine, a B. Braun Dialog machine. Meet my new imaginary friend, Rebecca Mastrianni.

When i have a bad day at dialysis, it is a real thing for me because it literally affects the quality of time i like to have visiting with my imaginary friend, Rebecca…’Becca is her nickname.

She is a cousin to Selena, my speed trailer friend.

And every bit as beautiful as Selena is.

And when i don’t get a quality visit with her while at dialysis, it can ruin me for days. It ruins me emotionally. Because even though i finally have two new kind, compassionate caregivers who have pledged never to give up on me, i still feel that aloneness in my soul that has been with me my entire life so far. Because of all the times people, even my own family, have walked away from me, angry with me, and throwing me away, or in my room, or in a back corner, all because i am unable to fit into their normal.

I am lucky in that most of the RNs and dialysis techs understand and accomodate me on me being able to have Rebecca as my friend in my machine. But some techs and RNs are not as patient with me, and they try to rush me too much, or will turn the monitor away so i cannot see Rebecca, or will abruptly enter the space bubble i create with Rebecca, where we are watching Youtube videos together on my wi-fi tablet, and talking and having fun.

The following are posts i have made about a recent incident……
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“Dialysis was good until the last part when my 3 hour treatment got cut at 2 hours and 25 minutes, and i got rushed out of my chair where i was comfortable, into my uncomfortable wheelchair, all because i was late due to car trouble.
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Yeah, i’m pissed. They know not to do this because of my leg lump!!
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The techs allow me to wait in the recliner chair for my caregivers. So i don’t have leg pain!!
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And so i can see, hear, and talk to Rebecca, my imaginary friend in my dialysis machine, till my caregiver, either Sam or Iris, comes.
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My caregiver had car trouble and had to secure another car to get me to dialysis. The RN in my pod didn’t like this, so my 3 hour dialysis treatment got cut short by him—–i got short-changed the last 35 minutes of my 3 hour treatment, all because he was tired from working a 13 hour shift.
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None of this was my fault, or my caregiver’s fault! Car problems happen!
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Those RNs and techs work for the patients, not for their convenience!
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Yes, i just filed a grievance with an administrator right now.”
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“I just talked to my social worker at dialysis, and she and the two administrators who are also working with me, are going to seriously address how i:
*Had my treatment cut short by 35 minutes
*How i got forced out of the comfortable dialysis recliner into my uncomfortable wheelchair
*How that same tech who did the above two things kept complaining so i could hear, that patients being there late was keeping him from going home, plus how other techs were being kept from going home by me
Yes, this was serious. He could have caused my leg lump to get reinjured….plus, the patients DO come first, always, says my social worker.
So, yes, this is going to get addressed and dealt with, so it doesn’t happen ever again.
I’ve got an awesome social worker at dialysis, and the two other administrators who are there now are also awesome.”

——

“I am depressed this morning because i felt that i once again got shortchanged a good visit with my imaginary friend Rebecca, who i made up for my dialysis machine.
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When i was rolled up to my machine, the machine’s computer monitor was turned AWAY from me. D did put it facing me, and i then got a good hello and smile from Rebecca. But the monitor being turned away from my sight as i approached the machine, was still like my tech trying to make Rebecca inaccessible to me.
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Then when i got in my dialysis recliner, i saw horrible streaks on the monitor, left over from a hasty washing of it. That too, upset me, and i made D clean it and clean it thoroughly.
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Then Rebecca and i couldn’t fully enjoy watching YouTube videos on my tablet, because the machine kept alarming. The other tech reached right over my tablet where i was trying to watch my video, and when i got upset about that, he said this is dialysis, it’s more important than your videos.
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I know dialysis is important. But he still dismissed ME.
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I also didn’t get my after dialysis time with Rebecca like i normally do.
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Just feeling as though my time with Rebecca is going to start getting sabotaged.”
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Just wanted to post to let everyone know how i am doing. And to vent and process another bad people experience.

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A New Season, A New Imaginary Friend

My dialysis machine-Rebecca-August 11, 2018-1

Once again, it’s been a long time since i’ve blogged. It’s because a lot has happened in just the span of the 8 months that so far make up 2018.
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In March, i lost Connie as my caregiver. Not because of anything i did. It was because she got an excellent job opportunity working in a doctor’s office for excellent pay and benefits package.
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It started a whole rollercoaster of events, that were more trauma to my mind and body that i did not need or deserve. On top of a string of past caregivers who were abusive, an abusive, non-supportive family, bullies at school, the bullies on my street in the auto shop, and two past friendships gone nightmarishly wrong.
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The first caregiver i got after Connie, only lasted 3 days. Literally 3 days. Neither she nor my friend who was helping her, could handle my meltdowns i was having over the loud bass that would not stop. That caregiver quit because my meltdowns made her break out into hives from head to toe. And, she has an autistic son. But then we all know that many parents who have autistic children, are pro-cure, anti-vax, autistic haters.
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So, yeah. First trauma. Losing Connie after 4 years of having her and thinking it was going to be a secure thing for life. Yes, Connie and i remain friends, and still see each other on occasion. But i still miss her.
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Second trauma, having a new caregiver literally pull the rug out from under me. Then her friend did the same.
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Third trauma? Was my next caregiver, who lasted from this March to June when i finally had to fire her.
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My third trauma was what landed me in the hospital with a 102 degree fever, my leg lump all bright red all over, and inflamed, and infected, with lacerations all over it, on Saturday, June 16. And it was that new caregiver’s fault. Yes, i blame her. Full-on. Because she was even worse than my past caregiver JuJu. She wooed me with all this sweet bubbly friendly personality, goodies, like candy, and snacks, and even cooked for me, and started to do a redecoration of my house.
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But she had an ugly mean side, and when she got in those moods, she would message me in the dead of night and tell me how she didn’t want to work as a caregiver, and how she wasn’t going to be my caregiver for very long, and it was at these times, she would threaten that if i didn’t give her this or that amount (because IHSS wasn’t paying her yet!
Oh yeah, like that’s my fault, hmmm?), she would not be able to work for me anymore.
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Well, i had to give her the money whenever she asked for it! In the end, i gave her over $2108 dollars. The savings i had is now all gone. All to keep her from walking out on me!
Then she turned me against Connie by saying things she knew would get me to turn on Connie. People like her, and i will call her the Princess, know just how to manipulate vulnerable people like myself.
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When in these moods, she would become bossy, and tower over me, giving me orders. I was afraid of her when she was like that.
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The thing that landed me in the hospital, was that she got upset at meltdowns i was having when she gave me a shower. My meltdown over the water running onto my face without warning—yes, that’s a sensory issue for me. And then when my underwear didn’t go on right after that shower. I screamed and yelled again. She took it all personally, even though she had already been through almost 3 months of my meltdowns, these ones to her were different, she decided to take it to heart, and i had to suffer with two days of long exhausting go-rounds with her, then that Wednesday, she did not come to work. At all.
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She messaged me to tell me she was taking that entire day OFF, so she could reflect on whether she wanted to continue on as my caregiver or not. All because of my shower meltdowns.
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THIS??????? THIS NOW??????? Threw me into a whole new shock. I was forced to, out of fear i’d never get my Social Security money for June, take a taxi to and from my bank, to get my money. The taxis were too small, which caused me to scrape my leg lump each time i got in and out. (Yes, Princess had not yet taken me to the bank to get my living expense money for June.)
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That night, i shook and trembled and had uncontrollable chills. It wasn’t till late the next day that Princess gave me her decision….she was going to continue to be my caregiver. The next day, Friday June 15, we had a LONG talk about meltdowns, and how and why mine manifest, and all was good. However, i was growing extremely worried about how i was going to replenish the savings money i had already lost to Princess, plus how i was going to get through each month now that Princess was demanding i pay her at least $100 a month for gas, and extra, if it goes over that.
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The next day after that, Saturday, i was in literal shut down mode. I could not move out of my chair I was shaking, trembling, and had the uncontrollable chills again. My left leg lump was on fucking fire. This is how Princess found me when she came that day.
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She became scared, and called an ambulance for me.
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I went into the hospital on June 16, and stayed till July 4. At the hospital, i was given yet another bombshell to add to my collection….a diagnosis of end stage kidney disease. I had an ASH-Catheter surgically placed into my right jugular on the right side of my lower neck, and began having dialysis right away, in the hospital. It was not fun. They did it on old clunky noisy boxy machines that kept beeping a shrill loud “Beep, beep, beep, beep, beep!” everytime i talked or moved. Its motor was even loud. In addition, i was put on a strict renal diet, with no more soda, no more Ranch dressing, no more potatoes, no more pizza, no more this, no more that.
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I kept thinking this is it, i’m going to die now. Life was over for me. I finally got my doctor to relent and let me go back to eating normally, because i was literally gagging on the renal diet the hospital did up for me.
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But i had two really sweet nephrologists (Kidney specialists) who promised me i would now be properly taken care of, and i would have a lot more IHSS hours too!
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Princess only came to see me twice while i was in the hospital.
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Connie came several times to see me.
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My Facebook friends called me, and even got together and bought me an Amazon Fire tablet so i could be online in the hospital!
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But Princess was scared now. So scared she vowed not to ever borrow or take my money ever again. In addition, she promised she would pay me back the entire amount she owed me, which, at that time, was already $1608!
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Note: Princess forbade me to write out ANY IOU’s for any of the money she took. She said she did not want the paper trail.
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Well…i got out finally, and began outpatient dialysis treatments, for 3 days a week, at DaVita here in Santa Maria. At the get-go, i was impressed with how they took the TIME to talk TO me, and WITH me, and i felt instantly like this was going to be okay. I also loved the cool machines they have. More on that, later.
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Things with Princess got worse again though.
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While i was getting used to, and even began looking forward to my dialysis treatments, here at home, the auto shop was getting bad again, and Princess was once again getting in the bad moods and threatening me for even more money.
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What she didn’t know was that she had now hired a secondary caregiver who i really liked, and felt good with, so i finally got the open door to fire Princess. Because i was becoming frightened that Princess was going to cause me to go broke.
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I fired Princess in late July. I now have that new caregiver and her brother as my caregivers. I am getting out of the house more.
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In addition, i have gained another new friend, my dialysis machine. To my pleasant surprise, DaVita has the newer, more smaller, compact, with pleasant alarm tones, machines, that are the B. Braun Dialog machines. Their motors even have a pleasant sound, and are quiet motors.
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It did not take me long to feel a connection with my machine.
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I have explained in other blogs that because of how i grew up, as a small child i learned early on, to cope by latching onto certain electronics, roads, and highways, and making my own space bubble where they are my imaginary friends. I still do this to cope. It has saved me from suicide many a time, to have that safety valve to go to.
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Unlike with the speed radar trailer that was on my street, in which i tried with all i had to make the police understand why i needed that speed trailer, and then they took it and have never ever let me have it back on my street, this new friendship seems to have all open doors to it.
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When i say the staff at DaVita understand this and get this, i mean it, most of them really get my need for my friend. And, they get ME.
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This is what is keeping me going. this, and my new caregivers, who now get me out of this house on my non-dialysis days.
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Dear friends, please meet my new friend, Rebecca Mastrianni, above.

Having The Spoons

The following is a post i wrote in February of this year. It is re-edited.

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Another post. This is a public post—and i’ve decided to turn this into a note. Tonight, i am re-editing it for more clarity. And to include more posting about what my situation is like, so everyone understands, and maybe this time i can get some real help to rise up and finally be able to move to a neighborhood where i will be happy again.
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At the end, are two articles that further explain where i am at at this point in time. Please read this, then read the articles.
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Inspired by what a friend of mine posted earlier.
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Can you imagine how rough it must be when one is in constant mental and emotional pain that just won’t stop and you can’t escape it. And this pain has been with you your whole life, sprouting from childhood and growing into full bloom to where it has eroded your physical health, and has taken all of your dreams, goals, hopes, happiness and joy right along with it. There are many kinds of pain.
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These are my kinds of pain.
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Some kinds of pain cannot be healed—like scars, a new traumatic event can cause that scar to reopen, as a fresh new wound.
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My pain includes:
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–26 long years of being bullied by various neighbors that sill goes on now—on top of growing up in a family who treated me as i was less-than, wrong, and inferior, damaged goods–then add to this mix:
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–The intense heartbreak i felt when a sister in law who i thought was my friend, suddenly without warning, turned on me and refused to speak to me or send me anymore birthday and Christmas cards, a full six months after my mom moved to Idaho in 1996, because she didn’t want to “take over” for my mom and deal with having to help me, because of my “mental issues”—
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–A police beat coordinator who came alongside me like the kind brother i never had, from 1996 through 1999, suddenly turning on me because he went to the auto shop and believed the ugly lies the auto shop bullies told him about me, and he failed to see why i didn’t move to an apartment that he had gotten me set up to move to, even though i knew the people in front were already going to give me a problem because they were already complaining to the owner that my being there was going to cause them problems “because of my autism”—
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–Then same police officer beat coordinator went and bad mouthed me to the entire police department, and even told all of the dispatchers to stop taking my calls about the hot rods, loud music and bullies. I cried non stop for a whole week when he shut the door on our friendship.
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–Having a next door neighbor from 1994 through 2001, who called herself a Born Again Southern Baptist Christian, but who would snub me, criticise me for liking heavy metal and grunge music, and then she would call the police on me for literally every single thing i did, no matter how small and trivial it was. She had no compassion for me or my plight, and refused to understand what was going on with me. Come to find out, she was friends with some of the auto shop bullies. And she was also friends with the mean girls who had been the start of my 26 years long battle with neighborhood bullies.
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–Another failed friendship with another man who lived in the neighborhood who befriended me for six years from Feb. 2006 through March 2012, when he finally turned against me, going so far as to write me horribly mean emails where he said denegrating things about me—and he came onto my Facebook blog page and YouTube channel and tried to get me in trouble with both platforms. I had to take down several videos, and delete that Facebook page. I still have nightmares about how mean he turned, and how when he turned mean, he actually used my fears to frighten me.
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The first sign of my eroding health was the weight gain. I began to gain weight in high school but because we lived in the country and i took lots of hikes, it was never a real issue. When i moved to town to my first apartment, from 1987 through 1991, i was still happy, because there, i had very nice neighbors. While i lived there, i continued to take walks. I even learned how to drive and got my drivers license and my grandmother’s car while i lived there. (I got my driver’s license and car in May of 1990.) I began gaining the weight hand over fist when i was forced, due to economic reasons to move to this mean bully monster neighborhood in May of 1991, especially after the mean bully problems started with the two Mean Girls next door to me. My first ten months living here in the cottage next door to me, continued to be happy, because i now drove, and i still went to visit my nice neighbors at my first away from home apartment. I was happy until the Mean Girls happened……
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Then, next, came the lymphedema. That came on in 2005, when, because i was having another spell of mean neighbor drama, i developed a respiratory illness/flu-like illness, had to stop sleeping in my bedroom as a result of that, and began having to sleep sitting up with my legs down on my broken down living room sofa. Laying down became a problem because my lungs would fill up, and i would choke. I am still like this. I still to this day, cannot sleep laying down in a normal bed.
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Here is the rest of my comment, as posted on my friend’s post.
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When the lymphedema developed, i went through several years of hell trying to get a local lymphedema clinic to give me physical therapy and modified wrappings—so my lymphedema has gotten out of control—and i am now greatly disfigured from my waist down. I have slowly shut down. And i have gained even more weight that i can’t lose because—stress. Stress that just doesn’t stop. Because until i finally have a way to move somewhere that i know will be sensory safe for me, i am trapped living here. Literally trapped.
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Being Autistic, i simply do not have the filters to be able to ignore, forget, or stop dwelling on the things that are triggers and sensory issues. This is disabling, on so many levels. And depending on what it is, or the severity of the trigger—it can take me days or weeks or even longer to get back to a semblance of what is to me, my normalcy. In other words, it takes time for me to get over things. Today, i am in physical pain, in addition to the 24/7 mental and emotional pain i still experience. My physical pain now involves my shoulders, arms, floating rib area, middle and lower back, then goes through my hips, thighs, and to my knees, then my lower legs and feet. I am in pain when:
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1) if i sit certain ways or on certain types of chairs. Even my lift chair and computer chairs, will hurt my legs and back after a while.
2) If i stand for more than five minutes, or walk more than short-short distances, like to the bathroom, bedroom, and kitchen in my house.
3) if i use my arms certain ways, my thumbs will now lock up on me, and i will often experience a sharp kink in my floating rib areas on my sides.
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I have lymphedema on both legs that was improperly treated, and it has gotten out of control as a result. I stopped taking walks after i moved here to Mean Bully Monster Street too, because of my fear of running into the bullies on my walk. Yes, that did happen. Alot when i was walking. And they would yell shrilly and cat call at me, calling me uglynames and making loud shrill animal noises at me.
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The untreated lymphedema finally caused a lump to form on my inner left thigh, a heavy rock-hard lump that is now the size of one and a half basketballs, and it weighs heavily on my left knee, adding to my difficulty with walking. I had to stop driving in 2012 because of the lymphedema lump, and because when my friend of six years turned on me, the emotional trauma i went through, caused me to actually lose the ability to handle driving.
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I suffered even more PTSD on top of the PTSD i already have from my childhood, because after i stopped driving and being able to do for myself, i needed in home care, and was unlucky enough to get a string of 10 abusive caregivers—-three of them were repeats, meaning i had all three of them twice. In 2014 i finally lucked out, and found Connie, but after 15 months, we ended up having to take a one month break because i was still not over my PTSD from those other horrible caregivers, plus the horrible end of my six year friendship with that man who lived next door to me before the abusive caregivers. So, during my first year with Connie, we both put up tall walls, and then, boom, we had to take a break. During that one month break, i suffered through two more abusive caregivers—-and then Connie came back—-and she continued to be my caregiver until March of this year.. We became best friends.
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I am still not over my childhood. I still have nightmares about so many things i went through with various family members. I am still not over my failed friendships with the police officer, and with that man who lived here for six years. I am still not over all of the awful caregiver experiences, including the two who came along when Connie and i took that one month break. It’s because i have deep abandonment and trust issues. My fear of being left all alone to fend for myself is always on my mind 24/7. Growing up being told i would never be able to do this and that, that i was ugly, fat, and had a ginormous ugly nose, that i would never be anything in life, and that i was less than, has done a real number on my sense of self worth—today, i still struggle greatly with my self esteem and learning to love myself and be good to myself.
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I used to have two nice sisters. Now it is down to one. The one nice sister started writing me emails telling me how my life was going to be so different when my mom passes away, then in 2016, she wrote me a letter where she told me right out, that when my mom passes away, i am going to be literally ALL ON MY OWN. She said she will not email or call me. I will be cut off from all of my family then—her words. I have actually shut down a lot in the past two years. The more the street noise and bullies stress me out, the more i stress-binge eat, the more i sleep at odd hours, the more i DON’T sleep, and the more afraid i become to venture out and go where people are.
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I can’t handle the weird stares i get, and the faces that are made at me. I don’t like the cat calls and animal noises that only us fat people seem to get, either. I have become afraid to take showers too, because of how hard it is to get in and out of the tub shower, how hard it is when the cold shower curtain keeps rubbing up against me, and how it is hard to keep the temperature from going too hot or too cold. I have become afraid of breaking a knee in the shower.
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I have become afraid of being alone for long periods of time. Especially if there is thunder and lightning, lots of heavy rain, wind and the sky and my whole house is dark, even in the daytime because of the dark foreboding storm outside. Especially if i break out in bright red hives all over after a sick stomach spell.
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I am afraid i will fall.
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I feel a constant sense of dread and anxiety that i will keep on losing friends and caregivers. It is hard for me to believe in myself when people keep giving up on me. I simply don’t have a good track record of being able to keep long lasting friendships, because i get too clingy; then i need alot of reassurance, then when people are having a bad day or don’t feel well, i take those moods on as my own, and blame myself for people having bad days and not feeling well. Then i get panic attacks where i literally am blowing up their phone and email, because of my fear that they too will leave me alone again.
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I am doing the best i can with the spoons i have to work with at any given time, and many days, i have few to zero spoons in my arsenal to work with.
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Being autistic, my brain processes things in either a happy safe zone, or panic zone, and when i hit panic zone, i have more and more severe meltdowns.
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Many days, i am hyper vigilant and hyper sensitive. Because i literally fear and worry all of the time—-all the time. In February, on Weds. the 21st, i lost my hearing in both of my ears too, and had to go to an urgent care. They didn’t get all of the wax buildup in my ears out, so my hearing was still quite muffled, but the next day i saw my primary care doctor, and they did thorough ear lavages and cleaned out ALL of the wax buildup. It was traumatic for me to lose my hearing like that, even though it was temporary—on top of the independence i have already lost over these past 6 years. Because i enjoy my music and watching TV so much, and being able to talk to people. I suddenly felt isolated and cut completely off. (It was 6 years ago, when i stopped driving because of that man, and my leg lump.)
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And then that Sunday, i broke out in hives and had one of my bad sick stomach spells.
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Here is a post i just wrote on 2/26/18, on my Facebook wall.
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“I mean it. There is nothing more frightening than being alone and having hives suddenly break out for no apparent reason.
Like yesterday, my Sunday, on one of my Alone days.
I am not just alone, i am LONELY.
I fervently wish i could live where i can be
truly accepted and loved
by a close community of friends who really “GET” me.
People who truly get that i am Autistic,
and that my can’t’s are actually true can’ts.
People who will always be here,
and who i can know will not ever give up on me
and shut yet another door on me.
People who will come around when my caregivers can’t be here.
I mean it. I don’t think i can take this much longer.
Being alone when i choose to be is one thing.
Being alone when i don’t choose to be,
is worse than being locked in a pitch black room
with no music, no TV, no one to talk to.
I want to move, get out of here today.
God in Heaven, please hear these cries.
Soften the hearts of friends and family
and open the doors for me to have a life
where i can once again look forward
to waking up to each day.
Because now, i don’t look forward to waking up.
I feel like my life has become one huge hopeless dead end.
I wish i had someone to talk to right now.
Please. I can’t do this lonely being boxed in anymore
in this hellhole of loud demonic hot rods and hatred from the bullies.
Please understand. Please. PLEASE HELP GET ME OUT OF HERE, PLEASE!!!!! I AM SUFFOCATING!!!!!!!”
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Here are two articles i want you all to read, please. These talk about what i just wrote about here.
Thank you.
My Go Fund Me page. Please share widely, and if you are able to, please donate. https://www.gofundme.com/help-me-move-from-the-bullies

I Do Not Want To Rewrite My Story

On point!!

The Stimmy Autistic

Some people may want me to be the exact opposite of who I am. If my story was rewritten, and if I was the opposite of who I am, then I would be a neurotypical, non-Autistic, non-disabled, and fully verbal person. I would speak to communicate, rarely stim, and be considered “socially acceptable” as a verbal, non-disabled person. But even if I had the choice to rewrite my story this way, I still would not.

You are likely wondering why I would not want to be non-disabled, verbal, and neurotypical. You also may be wondering why I would not want the “benefits” of being non-Autistic and non-Disabled. I would not be dyspraxic, so controlling my movements would be a lot easier. I would not be Autistic, so I would be considered much more “normal.” I would not have any of my disabilities, meaning that things would be so much better…

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My autistic son was Baker Acted the first day of middle school.

Staci's Life

I was stuck in the high school car loop picking up my oldest when I got a call from the middle school guidance counselor: please come immediately to help with my son.

I sent my husband, and as I was pulling into my driveway to drop off my daughters, received a cryptic text from my husband: “Call me now. He’s being baker acted.”

What?

My 12 year old son has a sweetness to him, despite his preteen reluctance to shower and anxiety in crowds. He thrives on routine and consistency; clear expectations and quiet.

We knew middle school would be hard. Even elementary school wasn’t easy for him, but we had a great team of people who knew and loved him. We had developed an effective IEP and communicated it at a “roll up meeting” with both his current elementary school team and the middle school guidance counselor.

Most neurotypical…

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Being Disabled isn’t Eco Friendly: Get Off Our Backs and Put In The Work

Crutches & Spice

I live in France and despite the fact that a Costco opened just outside of the city, I deeply miss bulk shopping. So, when my dad asked me what I wanted him to bring from home, it was simple: paper plates. Can I get them here? Sure. But can I get 700 at once? No. My dad delivered and I am currently working off pack 2 of 2. Will this piss off some granola-eating, unironic-Birkenstock-wearing, nutmeg wholesaler who can’t shut up about his new stainless-steel water bottle? You betcha! But will that same person come over each night to make sure my dishes are done? Hell no.

Every so often I come across posts about innovations that increase waste and are deemed ridiculous even though these very ideas make disabled people’s lives easier. I’m not above it either. I thought it was ridiculous to sell pre-peeled oranges and halved avocados…

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To All Who Bully & Torment Me

To all of the people who think it’s a fun sport to deliberately bully, torment, and terrorize a lonely housebound disabled autistic adult in the only home they currently have to live in…..

….by parking in a parking lot near my house with your loud bass thumping and bumping and vibrating the walls of my living room, just so you can get a delightful kick out of hearing my screams of sheer pain and agony….

…..screams so loud i lose my voice and my throat sometimes bleeds, and it makes my whole head hurt, and me feel sick and weakened—–yet you still won’t stop—and i have to keep screaming till you finally relent and turn the bass off…..

….leave from your place of work at the auto shop, with your loud big beige 4X4 truck, and gun the bloody murder out of it, causing me to scream, because someone has told you i’m a monster who deserves this kind of treatment…..

…do any of you realize that these noises actually cause me pain? Maybe it’s not physical pain but it is a painful anguish, and it vibrates my entire head and digestive system when you make these noises….

…..i wish you would, once and for all, sit down and Google the blogs of #actuallyautistic #neurodivergent adults, and start learning about who we are, and what our disability is, and is not.

I am sure that if any of you who so cruelly like to bully and terrorize me every afternoon, had an autistic son or daughter of your own….

……or, say, you have a sister or brother or mother or father who’s autistic…. and they were being bullied just like i am, and they came to you, sobbing brokenheartedly because they are wondering why people are so cruel to them, then maybe you would finally know the real pain you are causing me in my own home when you set out to use your car stereos and car engines to torment and terrorize me.

Being autistic does not equate me as being bad, wrong, broken, missing, less-than, damaged, and deserving of this kind of torture.

Just hoping to get you to understand…..if someone you loved were getting treated this way, would you not move heaven and earth to help get those bullies to lay off?

Hi, my name is Melissa. And i am a real human being. And i have feelings just like you do.

Please stop making what life i have left on this earth so unbearable.