Tag Archives: My Autistic Dialysis Hell

Being Punished For The Right To Live

It’s getting harder and harder for me, a full-on neuroqueer, neurodivergent Autistic adult, to handle going to in center dialysis anymore because the blowups just keep happening.

Four hours a day tethered to a machine, 3 times every week, I do this just to keep on living.

Even after educating them about autism and meltdowns, what they are and aren’t, they still revert back to calling it “behavior” and want to treat me with traumatizing ABA-style “behaviorism” that simply Does. Not. And. Will. Not. work with autistic people.

One cannot pray or behaviorize our autism away because we are hardwired autistic from birth to our final breath.

Autism is a Developmental Disability. It cannot be fixed and cured.

It is always when my nurse and or tech are hectic-busy with other patients and I happen to need help right smack dab in the middle of it all, that tempers tend to flare on all sides.

No one is being bad, no one’s to blame, only that dialysis clinics are often far too hectic paced in nature, and oftentimes fuses just get short on all sides.

I had a meltdown so bad today because

1) Nurse W was there—right in plain sight of me today,


2) my room acoustics were not there for me to sing to and enjoy.

(I love to sing to the tune of the room acoustics and call them my “chestnuts” because of how they resonate in my ears and calm me down to hear them—all rooms have room tones, this is why people like singing in the shower)

They were flattened out due to the computer station being moved, changed them so I could not hear them anymore

—my nurse got impatient with me, and I melted down—

—-and because I melted down, they had to take me off the machine and send me home after just 30 minutes on the machine, because I was hitting my head and hitting my chest area.

This is why I keep writing to educate all of you who do not know, how much we are disabled, not by our autism itself, but by the ignorance and impatience that we still get from non-autistics.

So you all will know what to do and say to keep a meltdown from happening in the first place.

I don’t fault my nurse. I fault the fact that there needs to be four nurses per side instead of two, and even more techs than there are per patient. When a dialysis clinic is short-staffed,. even the best angel can lose their patience.

How about just letting dialysis patients all have private rooms with each of us having a dedicated nurse and tech, instead of just lumping us all in side by side by side??? Like some clinics in Europe do?

But still—I have educated this clinic till I am blue in the face, and I still encounter these blow ups. These same and very preventable blow-ups.

Nurse W was abusive. She was all levels of abusive and gaslighty. But she still works there, so I still have to see her from time to time.

But my current nurse does not seem to have even one mean bone in her body.

She happened to be dealing with a new patient today, and because I had flat room acoustics, my anxiety went sky high, and I kept pushing my call button. She finally lost her patience, and scolded me. This led to me blowing up right into a meltdown, complete with hitting myself—I was mainly shocked that my usually mild-mannered laid back nurse was scolding me, when I know she knows how pervasively deeply that affects me.

Below is the poem I wrote to my social worker and to my nurse and nephrologist:

I am sorry, I apologize

I was not feeling well enough today

To be able to remain calm and controlled

In my dialysis chair

In the past two weeks I have discovered

that my chestnut noises are more resonant

and full-sounding

when the computer station is set a certain way

straight, against the wall

I am sorry I couldn’t wait

I am sorry I kept pushing the call button

when you were all busy

I am sorry

That I cannot get along with you all like I would like to

I do happen to love and care about you all

I am not there to cause any of you hell

I am in hell

because this clinic is not made for autistics like me

I do those chestnut noises all during my treatment

to keep myself from having anxiety and then meltdowns

Please understand that

I was upset because all of you kept pushing the computer away

and when you do that

I lose my noises

I am sorry that is so important to me

I like and wish to God In Heaven

that all of you would all like me

and get me

that is all I ask

That you all will learn to get me, please

Please listen to me,

see me,

hear me

I have to have these treatments

so I can live

So that I do not die

Please stop scolding me when I have a meltdown

I cannot help those

I can promise you

They are not a thing I choose to do

If you scold and judge me during a meltdown

It will escalate it and make it go to me hitting myself

I am trying

to educate you on what autism IS so you know

Because of Today I really want to quit dialysis

Not because it’s self pity

but because I cannot always be what you expect me to be

I have bad days

I have days when I have zero spoons

I am tired of going there

because sometimes you are too busy to give me what I need

Tired of making you all angry at me

for what I cannot help

I just am so tired…………

Full Documentation Of My Past 10 Months At Dialysis

#MedicalAbleism #MedicalAbuse #Gaslighting

Folks, medical ableism is very real, and this is what I have been having to endure at dialysis for over a year now…..and my clinic still won’t actually address this nurse who is still continuing to make my life a literal living waking hell.

I know this is a long read. But please read this and share this widely. People need to know what it is like to continually to be treated like I am a bad behavior when my autism is a disability, and how utterly isolating this is—to need dialysis to stay alive in a clinic that is not at all built for accessibility for autistic people.


When, even after I have bent over backwards to educate my dialysis nurse about my autism and neurodivergence, my dialysis nurse still:

*One Saturday in December of 2020, repeatedly slammed shut the ISO room door on me when I kept melting down because she kept yelling at me and scolding me, and saying I needed tough love and ABA for my “disruptive behaviors”, then months later when this is again brought up, tells me: “Oh, but I didn’t slam your door! I wasn’t the one who slammed your door! It was the tech who did! You’re remembering things wrong!”

That is what gaslighting is, folks. And gaslighting is abuse.

*On that same Saturday, what started my Saturday afternoon long meltdowns, was when she was prepping me to get me put on the machine, I asked her if she had read my list of autistic resources, she said to me: “Oh, well, okay, I did read ‘some’ of it, but I’m not going to follow much of it, because I also saw these ‘other’ videos that tell me I am to treat you with tough love, and not give in to your ‘behavior’.”

When I tried to tell her why ABA is not the way to treat ANY autistic person, she replied with: “I am a professionally, medically- trained nurse, so I am going to go with what is ‘evidence-based’.”

THAT, exactly, was why I was having so many meltdowns that Saturday! The Saturday that started all of my problems with Nurse W! It threw me into a panic because she wanted to treat me with literal ABA therapy! Because she went right to the pro-ABA videos. That I had asked her not to watch. And believed those over actually autistic people who have BEEN through ABA therapy HELL.

This was how my family treated me when I was growing up, and none of them knew I was autistic, just that I had childhood schizophrenia, and a “perceptual handicap”….the terminology of the ’60’s.

I was treated this way all through school. By most police officers. Because yes, I have had to deal with alot of police. I was also treated this way by most people who tried to befriend me. And by a long string of abusive caregivers when my physical health began going downhill.

And it traumatized me, over and over again, and gave me lifelong deep-seated trust and abandonment issues, lifelong self esteem issues and lifelong Complex PTSD—on top of my autism.

*On that same Saturday in December of 2020, also yells at me because a kind tech turned the horrible bright lights off for me because they were literally hurting my eyes, and she, the nurse comes in and angrily snaps them right back on, yelling at me for having them turned off.

(I get that it is state law to have a VERY well-lit dialysis clinic,, but why keep yelling at me and scolding me like I’m a little child being punished, because the damn bright LED lights are literally HURTING MY EYES????)

*Calls me paranoid and says it is all in my head when I tell her
my heparin is not running in the machine
or I am having weird heart palpitations,
or my machine has been set to take off much more fluid than I KNOW my body can handle at one time.

*Every single fear, question and concern I have as a patient is dismissed as me just imagining things, it’s all in my head, I’m being paranoid, or “I’m the nurse, I know what I’m doing, so be quiet”—and my questions and concerns go unanswered.

*Turns the machine monitor away from me suddenly, when she knows that is also a trigger, to not be able to see my machine’s monitor, then yells at me like I’m an unwanted dog to “get out of here, go to the bathroom now!” in a scary mean yell voice, when I protest about my machine monitor being moved so I can no longer see what is going on.

*Won’t let me write what I want to write on my Against Medical Advice form and gets angry about it telling me:

“Okay, you need to stop! Oh…that’s it! I no longer trust you. Our whole friendship is going to be much different now. You’re not going to get any of the perks and goodies I’ve been giving you anymore, things are going to be much different now, you have lost all of my trust in you!”

That is a literal threat, folks.

When Nurse W presented me with the AMA to sign she had written “refusal to let closing nurse do her take-off” on it, so I crossed that out, and went to write a less accusatory and judgmental version.

That pissed Nurse W off, and she began saying the horrible things she said to me above.

*Still orders me in a loud strict yelling voice that she knows upsets me: “Put your mask on!” when I genuinely forget to put it on.

*Keeps labeling me as a refusal this, a refusal that, and then throws in non-compliant and high maintenance when I have asked her NUMEROUS TIMES to stop labeling me those things!

I am autistic,
I am wired differently

and this whole dialysis clinic is a daily sensory NIGHTMARE for me to have to sit in for four hours a day 3 times a week.

*Tells me, with glee, like she is threatening me with punishment, that she is a mandated reporter and has to report what I have just told her, to the authorities, when I tell her I feel like I want to die, instead of talking TO me COMPASSIONALTELY to find out why I am feeling like I want to die—or getting the social worker so I can talk to them about why I reach the point of such overwhelm that I want to die—and I am left feeling totally unheard and invalidated yet again by my nurse.

*When one day I say out of my desperation I wish I would just crash on the machine today, and she uses this to threaten me that she cannot dialyze me when I tell her things like that—-instead of talking TO me and finding out why I feel this way.

*Repeatedly calls me paranoid, repeatedly tells me I am imagining things, repeatedly orders me around in a stern voice like I am still in grade school—and does this—over and over and over again till I just want to scream.

*On yet another Saturday, Saturday 9/11, she threatens to call the police when I am having a meltdown for being punished yet again by her, when I am just trying to show her how to wrap the ends of my catheter because she is doing it literally all crooked like she knows how I hate it done.

*On that same Saturday, tells the nice tech to not ask my permission anymore to take my temp, when it has been written in my plan that all of them are to ask before they just do things to my body. Using my boundaries, my right to my bodily autonomy, and my very sensory needs as weapons to punish me when I am “acting out”—her words.

That, also is emotional blackmail, and is all levels of abuse.

On Saturday 9/11, she and I were both on edge. I came in already upset. Because my house had a million nats in it that morning.

What made her take me off of my machine a whole hour early that day? It was not that I was scaring one of her new patients with my meltdown——it was actually because I made the statement out of sheer frustration at being barked at by her to “Put your mask up!”—instead of her asking me gently——when she came into see why I was melting down in the first place. Which was because I could not get my backpack off of its tray table. My backpack was stuck. I could not get it off the tray table.

I made the statement: “I am done.” That was her MAIN cause to yank me off of my machine and totally disregard my sensory boundaries and face.

She keeps on treating me like I am a bad behavior instead of an autistic 61 year old struggling to cope with a clinic that is NOT AT ALL set UP for autistic folks.

It is literally as if she looks for reasons to yell at me, scold me, and shorten my treatments.

For four whole months—from December 2020 to April 2021—she would put me on late, and then I would have to leave early, often 1 to 2 hours early, because she would sit at her computer and wait until 1:30 to put me on.

She as well as two other techs all huddle together, and it is like they look for ways to antagonize me into a meltdown, just so that they can then punish me. And then laugh and gloat about it.

This happens mostly on Saturdays when management and social workers are not there, but has also happened on Tuesdays and Thursdays as well.

So. After reading all of this….please try to put yourself in my shoes.

Would these things not make you feel like you can no longer trust this woman, this nurse, to take care of your dialysis treatments?

Would these things not make you terrified to have this nurse take care of you anymore? Especially since you are away from everyone else in the isolation room so you can still do your vocal stims that help keep you calm enough to get through 4 hours of being literally tied to a dialysis machine, and, because you are in the ISO room, you don’t have to have your mask on when people aren’t in the room with you?

I would have put my mask up, but please, for the love of God, ask me nicely.

She can be nice…very, very nice and sweet, but then these trainwrecks happen and actually ruins all of the nice times with her.

But, tell me, please…..Would this not make you feel like you do not matter as a human being to this nurse???
Would this not make you terrified to ever be alone in the room ever again with this nurse???
Would this not make you feel vulnerable???
Would this not make you cringe when you now have to even hear this nurse’s voice????

Does all of this not go against the patients’ rights, of which your clinic gave me a copy of when I first signed up for dialysis treatments at this clinic?

I am Autistic.
I was born Autistic.
It IS a whole different way of being,
and experiencing life
for those of us who are Autistic.
And we will be Autistic till the day we die. You cannot yell, scold, fix, problem solve and cure our autism.

When you yell, it literally is like we are DYING. Your yelling tells us we are wrong and broken. Shameful. And Less Than.

Autism is a disability. A disability that is protected under the ADA.

Ask yourself again, would YOU want this nurse to continue to work on you if YOU were autistic, and she kept treating you like you were a fucking criminal instead of the Autistic adult human being you are????

She may be a new nurse.
She may be human.
She may have a problem with anxiety when under stress.

But guess what? So am I….
Still a new patient
I am human.
I have a problem with anxiety when I am under stress.

I don’t like having meltdowns. I know it frightens the other patients. I try my best to handle having to be strapped to a machine in those uncomfortable chairs for 4 hours.

I try my best to always be considerate and kind to everyone there.

I bend over backwards to meet you all halfway there at this clinic.

Because I DO care.
I DO have compassion.
And great empathy for others besides just me.

I GET it that that one Saturday was 9/11. The 20th anniversary of a horrific event that I also saw happen before my eyes on live TV. Many of you lost loved ones and friends on that awful day.

God, I GET that so hard!!!!!!!!!!

But that was still no reason for Nurse W to yell at me, and scold me, and then yank me away from my lifesaving dialysis—-just for me saying “I am done.”???? Her words, again.

Tell me why, please, should there be any valid reason to repeatedly keep punishing me for what I cannot help as an autistic who has to undergo this dialysis just to live. In a building that is not set up for autistic people?

Why does this give nurses like W the right to continue to treat me like I’m a bad criminal, instead of an autistic adult who is more often than not, in a consistent state of sensory overwhelm when I have to go there to do my lifesaving dialysis.

Especially after I have educated this nurse over and over and over and over and OVER again???

Tell me. Please. I am waiting and I am listening.

A post script: They have, temporarily given me the head nurses as my nurses, and Nurse W was gone last week, but yesterday she was back on, even though she didn’t take care of me, one of the head nurses did—-even so, I still had to se and hear Nurse w’s voice, and it killed me to be in that room still having to see and hear her.

I am still waiting in suspense as to how this is going to be handled.

And another post script:

I am done with my piece of crap dialysis center.

They are moving me to Mondays Wednesdays and Fridays in the mornings beginning the week of Oct. 6th. Exact time to still be worked out, but hopefully a 9:30 AM arrival time, and a 9:45 AM put on time…this way I still have my afternoons to get all of my appointments, errands, grocery shopping, banking, showers, etc., done.

I will still be in the ISO room. But with a different nurse, and different techs. Meaning I have to be up earlier, there earlier, nd no more of me having to be there on Saturdays in the ISO room with Nurse Whitney…at Nurse W’s mercy.

It appears nothing is being done to address Nurse W’s abusive treatment of me.

I have warned them that if Nurse W can treat me the way she did, she will do this to the person who goes in the ISO room in my place.

Nurse W seems to love being the boss of me, well, now she got her damn way.

My Autistic Dialysis Hell, Part Two, And A Monday Afternoon Update

Saturday morning started with me battling multiple nats in my living room and kitchen. And my bathroom too. The nats have been all over for days now.I was already on sensory edge about the nats flying all over my house yesterday.

I went to dialysis on edge.

I had meltdowns at dialysis because I had yet another different tech in my pod. And my nurse Whitney was also on edge. When Nurse Whitney is in a bad mood or stressed out, I always pay. Because I have multiple vocal stims, I do my dialysis in the isolation room, and Nurse Whitney feels she can get away with mistreating me because she feels no one will hear. Because I am in the ISO room.

When I am already high anxiety, it has a rippling effect.

At dialysis my lines were unruly, and had to be adjusted alot. I finally had them lay them across my lower abdomen, because to keep them clamped to my left shoulder, made the white line cap for lab draws cut into my shoulder, and it was painful.

Nurse Whitney was impatient with me about having to readjust my lines so I could be comfortable in my dialysis chair.

Dialysis was me having alot more meltdowns.

I have begged them to assign another nurse to my side of Side B, one who would have patience and understanding and who would work with me and really listen to, see, and hear me.

Instead, I am stuck having to work with a nurse who lets me know consistently that she has problems with me because of all of my ISMS. I have been having problems with Nurse Whitney since December 2020.Towards the end of my treatment, with one hour and five minutes to go of treatment, I went to get my backpack from the tray table on the left side of my chair so I could call my caregiver to discuss my dinner meal plans, and the strap stuck on the side of the tray table. Before I had a chance to think to just press my call button for help, I began yelling in my frustration, plus profanity along with my yelling.

When having meltdowns, I cannot control what comes out of my mouth.

Please. Read that again.

What ensued, instead of Nurse Whitney coming to help me with my bag, was Nurse Whitney becoming impatient and yanking me off of my dialysis machine ONE FULL HOUR before my finish time. As a result, I got 2 hours and 59 minutes exactly of my prescribed four hour treatment, and when I fought to be kept on the machine, and she kept touching me without my permission, HER response was to threaten to call the police on me. Just like I was a criminal.

She kept putting her hands and arms close to my face as well, which she is WELL AWARE is a huge sensory trigger. Yesterday, she didn’t care. She even told the kind tech who came and asked me if she could take my temperature, to not bother to ask my permission for that, that she didn’t have to ask my permission, to just go ahead and do it…take my temp.

For the love of God, neurrotypicals, I need you to understand and GET that we as autistics are wired totally different than you. Our sensory needs are important for you to accommodate, because if you don’t, we are triggered into literal painful agony. Our sensory systems are wired much differently than yours are.

I have bent over backwards to try and educate you all, both through Facebook, and at my dialysis clinic for the past 3 years I have been going there to get dialysis, and still some do not get it that autism is a disability because of sensory needs not being taken seriously.

I need to get my story out there, friends. This is already ruining my weekend, because, and listen, really listen to when I say this, one does not just get over being manhandled and then threatened with the police who can escalate things even more to the point where we run the risk of being injured or even killed by the officers who come to supposedly diffuse my meltdown.

Calling police on us when we are IN DISTRESS, is the last thing one should ever do. There are ways to de-escalate meltdowns that do not and should never involve restraint, scolding, seclusion, any kind of threat or punishment.

I feel so utterly alone today. Like this is only going to get worse, until someone takes seriously that my nurse is abusive, and she needs to actually be fired.

In addition, she forgot to give me my hepogen and hectoral, and my heparin lock for both the veinous and arterial sides of my catheter at the end, and when I went to the bathroom during my treatment, failed to put the machine in bypass mode.

This is not the first time I have caught Nurse Whitney making mistakes with my care. I once caught her setting my machine to pull a full two kilos of fluid, knowing full well this would land me half dead in the hospital. One reason why I request to always have my machine facing me is, so I can watch everything, to make sure it is all correct.

My story of yesterday is all up and down my Timeline. It is all set to public and is very shareable.

I am asking all of you to please share this and put my story in your blogs if you have a blog. #MedicalAbleism is real, and it is happening to me, just trying to stay alive because some do happen to love and care about me…..my mom, my two sisters, Connie, Natalie, and my Facebook autistic disabled community friends.

Below is a post I made to an advocacy org that apparently is no longer in service…..so here it is, here:

” I am a 61 year old autistic adult who has been on in center hemo dialysis since June 2018, and a DaVita patient since July 5, 2018.

Although I have spent the past 3 years breaking my back to educate all staff and nurses there, plus the facility admins, I have been having serious issues for the past two years of my 3 years there, mainly due to impatient insensitive nurses, including the one that has been assigned to my pod for the past year.

For the past year, they have had me assigned to a nurse who for 11 of these months beginning in December 2020, she will sometimes be very curt with me, forget my sensory needs, and cause me to have meltdowns.

She has threatened to withhold nice treatment, her “friendship”, and in Dec., she made it her mission to keep shutting my door on me so that no one could hear my machine if it alarmed. If I have concerns or questions, it is met with “I am your nurse, I know what I’m doing!” and “You just don’t concern yourself” and gaslighting “I did put the machine in bypass mode” or “I did do that, didn’t you see?”

My story is on my Facebook. My local ESRD has been of precious little help.

You can contact me via my email. I would give you my contact phone number, but do not know if that is allowed via email.

Thank you, and I fervently hope you will help me. “

I probably won’t be alive by Halloween of this year, if my kidney center has its way in shoving me out the door. I may be dead within weeks. I don’t trust corporate healthcare. Or my kidney center.

I Have A Right To Exist
And Be Seen And Heard
As My Full On Autistic Self
And I Have A Right
My Lifesaving
Kidney Dialysis
All Four Hours of It.
Stop Taking That Away From Me
For Meltdowns
That Are Being Caused
Inability And Refusal
To See, Hear, Embrace,
And Respect Me
As I Am.~~~Melissa Fields

And an update from today, Monday, September 13, 2021:

Update on my dialysis center / nurse issues:

I have a 12 PM noon meeting between me, my caregiver Connie, my kidney center social worker, the kidney center facility admin, and my nephrologist, tomorrow before dialysis.

I pinned my social worker down when I talked to her just now as to if they are planning to involuntarily discharge me?

Thankfully the answer on that score, is NO.

Social worker says they are doing this meeting so we can all as a team, come up with a plan so that both staff and I can feel safe during my time there getting treatment., moving forward.

I was also adamant that I can no longer work with Nurse Whitney. I’ve worked with Nurse W for a year now, and still my issues with her keep happening because she basically does not care.

Whitney and a few others seem to believe fully in the adage that “When the cat’s away, the mice will play.”

Stay tuned, everyone.

My Dialysis Hell Continues

I had several meltdowns today at dialysis.

My lines that transport my blood to and from the machine were unruly, and kept bothering me. I had to have them routed differently.

Nurse Whitney, the nurse who is still assigned to me, lost her cool, saying that this was putting her behind to accommodate me on where to have my lines placed.

With one hour and 5 minutes left to go on my treatment, I tried to get my backpack off the chair’s tray table so I could message my caregiver to see what we were going to do for dinner tonight.

The long strap caught on the tray table, and so meltdown #2 happened. A lady, a patient on my side began to yell at me repeatedly to shut up.

It only escalated my meltdown to where I was yelling, cussing, and saying “I am done!” over and over.

Nurse Whitney marched in and proceeded to terminate my treatment against my will, stating that I was a safety risk.

I was unable to calm down. Next thing I know, Whitney warned me that she would have to call the cops if I did not stop, that my “temperament” was causing the entire staff and patients to feel unsafe.

I had no choice but to leave, and have my caregiver pick me up earlier than normal. I only got 2 hours and 59 minutes of my prescribed 4 hour treatment today as a result of what I know In my heart of hearts could have been handled much differently, by Nurse WHITNEY.

I keep having these kinds of problems with Whitney….yet they keep assigning her as my nurse….even though she keeps dressing my catheter all crooked, and with crinkles and creases, and gaps in the dressing, and she, along with Tech named BELEN, are always the ones that causes my meltdowns there. It IS intentional.

I have been having problem after problem like this since August 2019 with impatient ableistic nurses and techs who keep moving my machine, touching me too near my face, and ordering me like I’m an unwanted animal.

I am unable to adapt to that hellhole anymore than I am able to. I literally cannot take having to go there another day.

This is where I am at tonight.

I need a miracle or I am going to BREAK INTO A MILLION LITERAL PIECES.

I need my community’s help, friends.

In addition, I wrote a review of my kidney center on Yelp. Here it is below, copied and pasted.


I wish I could give this place a zero, but the option was 1, so here it is.

I’m an autistic adult, yes, hello, there are hundreds of thousands (Actually, more than a million) of us autistic neurodivergent folks out there, and the past two of my three years of me having to get a vital lifesaving treatment that I am entitled to so I can stay alive for those who love me, at this center, have been sheer sensory hell….with only a small bit of accommodation for my sensory needs because they keep forcing me to deal with techs and a nurse who all have very little tolerance and patience for the challenges I experience as an autistic person.

I love my social worker, as well as many of the staff there. However, even though I have spent my 3 years educating them, some of the staff and the current nurse who is assigned to me, keep treating me as if the meltdowns—that some of them cause—is a behavior that I can control.

They do not get it—and don’t want to get it—that they continue to keep doing what I have told them thousands of times triggers me and then when I meltdown, I am yelled at, scolded, then thrown off of my machine early before the end of my 4 hour prescribed time, sent home, and today, my nurse even threatened to call the police on me, when I fought to finish my treatment.

After yet another meltdown that she and another staff member caused.

Today, I was upset, first about my lines being too uncomfortable for me, and then again because when I went to get my backpack to get my phone out to make a phone call, the large strap on it caught on the side table of my chair, and in frustration, I yelled. Because I yelled, I got sent home one full hour early. By threat and force.

Certain protocols have already been put in place at this center to mitigate my sensory hell, even so, my nurse still seems to enjoy causing me to get upset, so she can “make an example” out of me.

I hope Fresenius is reading this, because Santa Maria needs more kidney center choice, and I also hope Davita headquarters is also reading this, because this is cruel treatment of a person who has bent over backwards to educate them on my triggers, meltdowns, and how to handle me when I am in distress. So this kind of incident does not happen.

As per the Americans With Disabilities Act.

In closing, Autism is not a disease or behavior. It is a neurotype, and a disability. Me and the hundreds of thousand other autistic need for the medical community to finally GET this and stop treating us like we are animals and like the human beings we are.

#MedicalAbleism is real. Google it.

An Update On Dialysis

I am happy to report that due to my diligence with the ERD Network 18, I am once again back to four hour treatments, am able to finish my treatments now, and they are working on educating the techs and nurses and facility admin on putting us patients first always, and accommodating our disabilities.

This has been a hard road, but things are improving.

I have been able to finish all dialysis treatments since the beginning of May.

I will keep y’all posted.

Dialysis, Part Two

I started writing a post about today’s dialysis, and, well, FB decided to eat it again.

Today’s dialysis went okay, but it was mentally and emotionally draining for me. For me to have to see Mo there again when he frightened me by the way he yelled at me on Tuesday—-only today, to see that he was now all smiles and laughs, going all around saying nice warm friendly “Hi’s” to all of the other patients, and even pulling up a stool to talk to them ALL in a very caring, warm, and friendly manner, but, me, he totally ignored me— I think that is what has me upset the most tonight. Because he totally ignored ME. And talked to everyone else.

My nurse Whitney tells me that the facility admin did talk to him and address what happened on Tuesday, and my nurse Whitney also plans to follow up and talk to Mo the next time she sees him, since he will be there helping out for the next four months. So he and I can work together without anymore trainwrecks.

But this is what upsets me, and when I am upset it doesn’t matter what has upset me, it still goes over and over and over in my mind until I am a literal mess wanting to just roll under my house and die: Is that he totally ignored me and did not make any move to come in to make amends for putting me in a sate of emotional hell on Tuesday. But he made it a special point to warmly greet everyone else, and to sit or stand and talk to them warmly.

I was so afraid to go to dialysis today because of Mo. Because I knew he would be there again. So this morning when I awoke I called the ESRD (End Stage Renal Disease) Network 18 line to let them know what happened Tuesday. I had to leave a detailed voice mail and I did. I told them everything, and how shitty it made me feel all over again, just like my father all over again and his rage-filled harsh, punitive disapproval of me as a person.

My ESRD Network 18 caseworker, E, called me back during the second hour of my treatment. She and another dialysis nurse, Jewel, who really impressed me, by the way, **viola!** happens to know a great deal about the issues we autistic adults face with ableism, gaslighting and abuse, who is also against ABA therapy, knew exactly what I was describing, my feelings of feeling isolated from everyone else by Mo, and Othered by how I continue to be treated with insensitivity by the Facility director and some of the other staff members.

She knew just how to make me feel heard and seen, and when she told me how frightening it has to feel for me to have to go there just so I can stay alive, and continually try to educate the staff and still these problems keep happening,, how isolating and yes, terrifying this must feel—-I broke down crying—-because my normal social worker also saw and heard me just like this too.

The feeling I get when people really get why I am the way I am, and can articulate it back to me, makes me feel even more empowered to speak up for myself, and that I am okay after all.

Do people not realize, once and for all, that just treating those of us who are autistic with patience, kindness, and letting us speak and voice what is hurting us, and letting us be who we are in whatever space we are in, is the way to help and be a friend and ally to us, and that it is not helping us when you instead, judge us and make us feel wrong in what we feel, and you yell at us and scold us and treat us like we are merely just “bad behaviors” that are to be fixed and cured? God, it really is that simple, but yet, people just still can’t, or won’t, because to them, just because Autism Speaks and the media says so, we are burdens to be shoved off in the corner, and dismissed as nothings.

The team at ESRD Net 18 are in my corner, and that gives me hope again. They tell me that how the facility director is treating and handling my issues is NOT okay, and are going to help get her, and the staff to finally treat me like the human being I am. So I can start looking forward to going to my dialysis treatments again.

My Autistic Dialysis Hell

For years ever since my March 2012 final falling out with my then next door neighbor who was supposed to be a friend and ally to me, G, I have avoided having to go places—anywhere—by myself—ever again. Talking on the phone has gotten even harder for me to do.

The falling out I had with G threw a traumatic switch in my entire body making it so I could no longer handle getting behind the wheel of a car and driving it. To this day, I have not driven again. I still don’t feel comfortable driving.

Losing the friendship of G devastated me to my very core because I wanted with my entire being to believe he was the older brother figure I never had growing up.. He would be so supportive and compassionate, but then every other month, he would get in these pissy ableistic mean moods with me where he didn’t want to bother with me. My mother would have to call him sometimes several phone calls, to get him to be nice to me again.

After that final ugly falling out, I sold my tiny white two door Toyota Tercel, because I was too frightened to drive or go places by myself anymore.

This was the year my lymphedema leg lump grew even bigger, and I began having to have personal caregivers come into my home to take care of me. First, I got caregivers from two agencies my mom paid for, then it was IHSS caregivers.

My health—my body was shutting down even further. Because of G, and the then problems I was having with bullies who used to work in an auto shop across the street who tormented me, and just because I still was not free to be able to pursue any of the lifelong goals I have had for my life since I was a child. I still haven’t gotten to achieve my lifelong goals.

Because that falling out, coupled with the then problems I was having with the nearby auto shop bullies, literally was like losing the love all over again that I thought I had with my father when I was a small child and I stopped being cute in his eyes, and started being a major annoyance to him because I was so damned fucking different than all of my other brothers and sisters.

Losing G’s love and support, and by the way, he has never told me why, he just turned on me and began doing the very things he knew would trigger me, such as the loud man banshee yells he knew I hated from the bullies across the street in the auto shop. G too turned into one of those bullies. Losing his support, crushed me.

Having caregivers come into my home also added to my trauma because well, most NT’s cannot or don’t want to get autistic people and the different way we think, process, and experience and handle life. I went through literal holy hell with one abusive caregiver after another until I finally found Connie in March 2014.

My C-PTSD Trauma Me almost ran Connie off too. But Connie kept coming back to me. She has, so far, refused to give up on me. Like most people have.

In 2018, again in March, she left me once again, this time, not because we were having problems, but to take a job that had really super great pay and benefits, so she could take advantage of the health benefits that that job offered.

I went through several more abusive caregivers while she was gone, this time, abuse that got so bad that I tried to run away from my own home. Abuse that got so bad that my caregiver left me without breakfast, and a way for me to get to dialysis, so Connie had to quit that job and come back as my caregiver.

2018 was also the year my kidneys failed. And I began needing dialysis to stay alive.

At first, my dialysis clinic was on top of any and every problem that arose with non-understanding techs and nurses who didn’t get how to approach and deal with my sensory issues. The then facility director, along with my awesome dialysis clinic social worker, took real care to make sure these issues all got resolved for both the techs and me to be able to work better together. Everyone there had my back.

In August of 2019, that nice facility director got married and left, and her replacement was a woman who from the get-go was totally different. She was harsh and unbending….and soon, my problems escalated because she has never dealt with any of my issues that have come up, well.

With each problem that has arisen since her takeover, instead of her understanding and GETTING it that my meltdown responses are an actual medical response, which is a real something I cannot help when I am triggered, she has made it her mission to become my personal ABA therapist at dialysis. She focuses squarely on the yelling, screaming and cussing that results from my meltdowns—-instead of the very real state of mental PAIN and ANGUISH that I have just been thrown into. And keeps forcing me to work with techs and nurses who provoke these meltdowns.

Yesterday, a traveling tech from LA named Mo, a very handsome young male presenting person, was there helping them out, and he was on my side of the building floor. He wasn’t my tech, but was in the pod East of my pod, working.

I kept watching him with fear because he reminded me of a young 20-ish version of my father. I had the strong feeling that if he were to have to come into my room, he would not be friendly. Still, I hoped that I was wrong, that he would be nice to me if I did meet him.

In fact, when I made my vocal stim noises, singing to the tones of the acoustics in my room, he kept looking right at my room and shaking his head, rolling his eyes.

I honestly hoped he would not have to come into my room at all. I didn’t like the vibe I was getting from him at all. I knew he was going to be unfriendly.

And I was spot-on.

Approximately 1 hour and 54 minutes into my treatment, I pulled the call button because of an issue I was having with another tech, and because my tech was on her break, it was Mo who came striding from his pod, into my room.


There was NO friendly hello at ALL, and he had a stern, angry annoyed and disapproving look on his face as he looked right at me and then RIGHT down at the large basketball-sized lymphedema lump that is on the inner thigh of my left leg.

One of the somethings that really trigger me into a meltdown–is to not be acknowledged and greeted–one other trigger is to have someone look at me with disgust because of my lymphedema and body size, yes I am very fat, oh well, get over it—-and I have lymphedema too, so get over that too, buttercup—he just walked straight past me to the call button to turn it off—without saying hi to me.

Already, my head was spinning.

He didn’t ay hi.
He didn’t say hi.
He didn’t say hi.

I had said hello to him as he walked into my room, then past me to get the call button turned off..
He said nothing back.
I said hello to him again.
Still nothing.

I n fact, Mr. Mo seemed indeed very angry to have to be near me. Because I make strange noises, and sing to the room acoustics.

I’m a godsdammed human being with feelings.

{{{{{{I said hello to this man twice.}}}}}
{{{{{{He refused to respond.}}}}}}

The dam broke.

My response was to finally yell at him in frustration:

“Aren’t you going to say HI to me???”

Because hey, I am here, talk to me. It really hurts to be
Deliberately. Deliberately. Ignored. Hello!

Especially by a young Hollywood type man like Mo who in every way reminded me of a young 20-somehing version of my father.

I do well to go there and try my best to meet everyone, both patients and staff, all halfway. Because I do have compassion and I care about others.

But this arrogant rude AF young man was intent, hell-bent on coming into my room and being deliberately rude to me, just because he didn’t like how I looked, sitting in my chair with my leg lump on full display, the bulge right there for him to see underneath my pant leg.

He was not there to help me like I needed. He was there to just be a rude toxic masculine asshole. Who hated me because I made strange singing noises, and he hated me because of how my body looks. I have learned to see the signs of a medical professional’s disapproval whenever I have to go to any medical appointment. They focus on how I look, and my yelling and distress at having to be there, and call it a behavior and non-compliance. Instead of the real raw fear I am feeling of wanting to just run the fuck OUT of there back to the safety of my home.

Body shaming and disability shaming are what goes on in all medical establishments because medical professionals are taught in their medical schools that being fat and disabled are wrong and bad, so they don’t think twice about treating us like literal garbage.

Until now they had my back at my dialysis clinic, but now they do not, and these problems keep happening. And the problems are getting worse. As usual, their now facility director came in focused—not on my pain—but the full on loud meltdown I was having. Yes, I used profanity again, but during a meltdown, it is next to impossible to not yell, to not scream, and to not use cuss words.

This young man from LA, instead of saying “I’m sorry, hello, I’m Mo, what is your name?” Lost his fucking temper and went off on me. Complete with his finger wagging in my face.

“How DARE you talk to ME like that, YOUNG LADY! WHO do YOU think you ARE that YOU can speak to ME like that?” as he pointed right to my disfigured legs.

I exploded and told him to get out, I didn’t need help, and to fuck off. Then could not stop screaming.

In came Ms. Facility Director. Again focused on my yelling, saying she could hear me clear from where her office is. Focused on how loud I was being, not the state of sheer mental AGONY that her newest young arrogant precious asshole Mo had just put me in.

And they were going to even take me off of the machine early, but I told them adamantly NO! I was going to get whatever dialysis treatment I could get, and they relented and let me stay till my 5:30 get off time. I ended up only getting 3 hours and 18 minutes of my prescribed 4 hours and fifteen minutes of treatment I was supposed to get.

Because I still had to use the bathroom. And they never get me put on at my on time start time, which is at 1:15 PM, Tuesdays, Thursdays, nd Saturdays. I got put on yesterday at 1:40 PM.

My nice social worker who does have my back, has once again been gone on medical leave since the second week of January. She is now not expected back until the middle of April. So I have no social worker to go to and to talk to again.

When people are rude like Mo was, it sends me into a state of utter anguish and personal hell where I flash back to all of the times I was belittled and yelled down and punished and rejected by my father and brothers for just being ME.

I have never done well in environments where the people expect me to act and be the Apple Pie Normal I am naturally hardwired NOT to be. They expect me to rush at THEIR pace. To march to THEIR beat. To just shut up and let them go right ahead and get right up in my face and touch me when I did not ask to be touched. And talk to me however the fuck they see fit, even if it crushes my soul to the ground yet again.

Because oh, it’s just Melissa, she can handle it, because well, Melissa doesn’t matter. Melissa doesn’t have feelings. Melissa doesn’t cry.

Well, guess what? Melissa does cry. She breaks everytime someone comes along and treats her like she is yesterday’s dirty trash.

Because Apple Pie Normal was what was expected of me, and drilled into me growing up in my family. Every fucking single painful day of my life. By my loud yelling screaming domineering father, and my brothers, and sisters. I was expected to never make waves. To never speak up for myself. It was ingrained into me at a young age that what I felt and thought never mattered. I was to just go with the flow or get spanked and beaten and screamed at, then go off in my bedroom away from all of them, a sobbing crushed heartbroken mess.

Be seen, not heard.

Seen, not heard.

Over and over again.

Seen, not heard.

Yesterday’s encounter with Mr. Mo was the last straw. I will be following up with the End Stage Renal advocacy team later on today when I am up for my day.

I will never have another man get up in my face and yell at me like Mo did yesterday, ever again. If they do, it’s war. Because I took it all of my life growing up. I refuse to let them rob from me what little self esteem and self love I have grown to have for myself at the age of almost 61 years.

It’s called toxic masculinity. And I am not here for it anymore.

In the meantime, I spend another night wondering why I even have to continue to go to a place that is just upsetting me even more to be there, than it is helping me being able to just fucking stay alive because my kidneys have both shut down now?

Autism is a disability. Disabled people are human beings. It is time medical professionals be held accountable for how we are treated. Including you, Mr. Mo from LA! Stop judging us. Stop the body shaming. Start listening to us, believing us, and seeing us as the human beings we are.

Another Bad Dialysis Day, Because Of Those Who Still Refuse To Understand Autistic Me

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

The following is a re-edited open letter that i just penned to my social worker and to also the director of the kidney center that i go to get my dialysis treatments.
I still go 3 days a week, Tuesdays, Thursdays, and Saturdays. The following is a bit repetitive, because i wrote this while still gravely upset from the awful scene i was treated to as i got unhooked from my machine….Rebecca. Rebecca is the imaginary friend i have made up for my kidney machine. And she is real to me, because i need for her to be.
The letter……
Dear S, and N too,
It’s me, Melissa Fields.
Please do not kick me out! I tried to get off as fast as i could tonight after my treatment, i seriously did, and i would have gotten off within 10-15 minutes after my treatment if JF had not of come in and triggered me and gotten me highly upset again. JF coming right in my face at treatment’s end, the way she did, all harsh, and not listening to me ,but yelling at me, made it impossible for me to even get even a small proper goodbye to Rebecca tonight, and she got so harsh with me she was deeply hurtful. I had to wait till JF was gone to get my goodbye, which made it take longer, than if JF had just not engaged me in yet more argumenting.
Firstly, before i go onto tell you what happened, i am requesting to be put on a Monday, Wednesday, Friday 4th shift schedule as soon as possible so that i can still get my proper goodbye routine to Rebecca, or i will not come into get dialysis anymore. I am requesting to be put on at 4 PM and off at 8 PM, those days/evenings. This is a reasonable accomodation request for my disability of autism and C-PTSD. And because i have a kidney disease that i know will eventually kill me.
Yes, this really is how deeply my relationship with Rebecca means to me. I’ve had enough severe emotional trauma in my 58 years on earth…..my 58 years have been spent being mostly misunderstood and then shoved off, thrown away, excluded, and treated as something lees than that is wrong and defective….and….now….i am tired, both body and soul….. all i want is just a few things in my life that can still be mine…and safe to me…..which is Rebecca, my Facebook friends, my two caregivers, and the ones who do like me at ——-.
Otherwise, i will not be able to handle doing dialysis anymore. I am asking this because of how my autism manifests, and how i have developed my own **unique-that-work-for-me** coping mechanisms to keep me from having a full on mental breakdown because of how normal society still views us autistics as a behavioral problem, rather than the human beings we are, who have the very real neuorological disability that autism actually is.
Behavior IS a choice. Sensory overload and meltdowns are not a choice.
I need that goodbye to Rebecca for the sake of what little safe space in life i have.
If i cannot feel safe and welcome at dialysis anymore, i cannot do dialysis anymore.
What happened today and tonight…..
My caregiver and i arrived at 1:15, and they wheeled me into the room at 1:30 PM. I got put on the machine at 1:56 PM. At first it was M, Ly, Mz, and C who were working with me. At close, it was JF, Mz, Br, and Ba.
For the first part of my treatment, for approximately an hour, i kept coughing really bad, also having panic attacks, and the machine kept alarming. This, naturally, delayed my get off time.
My treatment, the rest of it, went well, after i was able to sit up and stop the coughing. I also had to pee two hours into my treatment, which also added time to my treatment. Things went well until my get off time approached, which was now 6:20 due to the machine alarming so much. None of that was my fault. Coughing cannot be helped. Mine was a deep tickle in my lungs that made my chest heavy, and i had to get my lungs cleared.
Even so, when it came time to get off, JF came right in, and, with me still in the chair, while my blood was still being returned back to me, she, without asking me first, reached up and punched the disinfect button to throw the machine right into disinfectant mode.
When i spoke up to tell her i still am allowed to have the machine be on and visible till my caregivers come, she got angry, and began to complain and argue with me. saying it has to be disinfected now…..then she said, in a complaining tone of voice, that i’m the only one who does this, making me feel Othered, and also said “Look you’re the last one left, you’re always the last one left here, we need to get out of here.” It was only 6:23 then! Even so, she expected me to just jump up and get right out of there, no goodbye at all, and continued to argue with me…..which kept me from saying my goodbye to Rebecca. She then reached over and moved my monitor away from me.
I had Mz go look for my caregiver and she went and got them to come in. My caregiver witnessed some of how JF was treating me.
Ba came in then and went right up to the machine and moved the monitor away from me again so i couldn’t see it. JF began scolding me, and i went into another meltdown. Ba moved the monitor again. Then JF moved it again. I had more meltdowns, because they kept taking Rebecca away from me.
To repeat, i cannot just get right off the machine. I have to, for my mental wellness, be able to have that full closure. Plus, there is my leg lump to also consider. I am willing to compromise though, and take only 10 to fifteen and not more than 20 minutes, instead of the 30 or more minutes i have been taking.
Instead of understanding, JF kept arguing with me, and at one point, even told me to be quiet. It was 6:32 now.
I finally told her that i knew she was one of the ones who complained to N about me, and she blew up at me, and i told her, straight up, i don’t like you, and then she left, and i got to finally have ten minutes of goodbye time with Rebecca.
What i am proposing is by being able to get the Mon. Weds. Fri. 4th shift slot, 4 PM to 8 PM, is that, i, in return, will make a compromise and get off my chair into my wheelchair, 10 to 15, and not more than 20 minutes after my caregivers, either —- or —-, come to my pod.
However, if the staff that happen to be on on 4th shift don’t mind, and i ask them and they tell me they don’t mind, can i still have at least 30 minutes goodbye time on those occasions?
On Thursday, i did ask La one of the RNs i like, and she told me if i go to the Mon. Weds. Fri. 4th shift, i can still have my full goodbye time, without being rushed out of my chair abruptly. because no one is going on my machine after me, and they don’y close till 11 PM on 4th shift nights. She stated that she would even let me still have my 30 or so minutes. She actually said i could take however long i need. But— obviously i won’t do that, because, well, i will need to eat my evening meal at some point…LOL!
Otherwise, i will try / strive to be done with my goodbye as quickly as i am able to……between 10-15-20 minutes.
I know La loves and accepts me, and so do Aa, Bri, Jo, Ch, Si, Li, Mel, Kr, S, An, My, Mi, Ma, Roc, Lou, Di, Che, and now even Lyn does too. (Kr and Mel, i met last week. And they love me right off the bat!) But i know that some of the staff definitely do not like me, and i know JF to be one of them.
I’ve thought about this all weekend long, and this is the only workaround i can come up with.
PLease know, Rebecca is real to me, and my relationship is deep with her. I view my machine as my kidney, my security blanket, and a security blanket that i badly need, with the ability to see the monitor, which is Rebecca’s head and face, and hear her motor, which is her soul, to me. I need that when i come in, throughout my entire treatment, and when i get off. To have that abruptly cut off, right when i get unhooked from the machine, effectively ruins it all for me, even if i have had the bestest most happiest treatment ever. If i cannot say at least a 15 minute goodbye to my machine after being taken off, unhooked, it will affect me in that i will be unable to sleep, as i won’t have that closure. And i will have meltdown after meltdown, and feel like not coming back again.
If this happens on a Saturday, like it did tonight, it will be even worse, because i have all of Sunday and Monday to build a nice PTSD trauma scenario in my brain and make me not want to come back Tuesday.
To tell me to say my goodbye while still on the machine, for me, is not doable because it is not saying a real goodbye, where i am free from the lines that run into my heart being in the way, if that makes sense.
Saturdays, with you not there, and Da not there, i cannot handle doing anymore, exactly because of what happened tonight with JF. It really was awful tonight. She remains unreasonably harsh and impatient with me.
I need to go to Mondays, Wednesdays, and Fridays now so i can be able to do my dialysis in peace. I am asking for this because of the consistency i have so far been allowed to have, till some staff began to complain about me.
And yes, i did have several meltdowns tonight due to JF, yes, i did yell, but i did not throw out any profanity. And i did not scream.
And i was out of there by 6:43, which gave JF plenty of time before the 7:30 closing time, to tear down the machine, clean it, clean my chair, and then throw the machine into disinfectant mode.
All times are correct, because i purposely kept close watch on the wall clock above me.
So, If i can come in Mon. Weds. Fri. 4 PM to 8 PM, i will in return, keep my goodbye time to 20 minutes or less….and try to aim for 10-15 minutes. That’s the best i am able to give of me. Seriously.
Because i know i am dying, which scares me shitless, and i need this, to keep my sanity, please!!!!!!!!!!
I really do need Rebecca. I need to have that goodbye time with her. Or this simply won’t work for me.
Please have —— read this.
Please don’t kick me out.
Melissa Fields, Yes i am in tears.
P. S. : I’m sorry this is so repetitive. I seem to be low on spoons all the time lately, and tonight, well, now my entire weekend’s now been ruined due to JF’s inflexibility and harshness. I am using energy i really do not have right now to compose this email. That is why it is so repetitive.
A post i just wrote on my wall…..
I am weak from trying over and over to explain to those who are committed to misunderstanding me forever and forever and ever, why i need my imaginary friends the way i need for them to be to me, why i need my routines, why i need my rituals, why i even breathe and exist as me, Melissa, who cannot be anything but the neurodivergent autistic me that i am.
Louder for those who still refuse to fucking listen…this is me. I cannot take off my autism like it’s a jacket.
I am not wrong.
I am not a mistake.
I am not damaged and broken.
I am not less than.
neither am i a goshdamned behavior problem!
This is me.
I exist. I breathe. I have rights. Hear me. Believe me. I have had 58 years on this earth to find out who the fuck i am. And who i am not. What i truly can and cannot do.
Please believe me and let me live in peace and don’t take from me the few things i DO have that are safe zones to me….
……one of which is my dialysis machine, Rebecca.

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……
“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.
Yeah, i’m pissed. They know not to do this because of my leg lump!!
The techs allow me to wait in the recliner chair for my caregivers. So i don’t have leg pain!!
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.
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.
None of this was my fault, or my caregiver’s fault! Car problems happen!
Those RNs and techs work for the patients, not for their convenience!
Yes, i just filed a grievance with an administrator right now.”
“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.
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.
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.
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.
I know dialysis is important. But he still dismissed ME.
I also didn’t get my after dialysis time with Rebecca like i normally do.
Just feeling as though my time with Rebecca is going to start getting sabotaged.”
Just wanted to post to let everyone know how i am doing. And to vent and process another bad people experience.

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.

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.
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.
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.
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.
Second trauma, having a new caregiver literally pull the rug out from under me. Then her friend did the same.
Third trauma? Was my next caregiver, who lasted from this March to June when i finally had to fire her.
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.
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.
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.
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.
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.
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.
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.)
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.
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.
She became scared, and called an ambulance for me.
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.
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.
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!
Princess only came to see me twice while i was in the hospital.
Connie came several times to see me.
My Facebook friends called me, and even got together and bought me an Amazon Fire tablet so i could be online in the hospital!
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!
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.
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.
Things with Princess got worse again though.
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.
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.
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.
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.
It did not take me long to feel a connection with my machine.
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.
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.
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.
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.
Dear friends, please meet my new friend, Rebecca Mastrianni, above.