Some GOOD News!

Yesterday’s dialysis ended up going very well …. after a real clusterf*ck of a start that is.

Yes, it’s dialysis story time again!

It started out with me having to deal with Johann the same exact mean tech who was very rough with me last Weds. Who caused all of my meltdowns last Weds.

So yesterday, she was ….. just AS rough …. just as loud and aggressive …. just as unwilling to listen to me …. and even kept touching my BRAND NEW wheelchair after I REPEATEDLY TOLD HER NOT TO TOUCH IT UNTIL I GAVE THE GO-AHEAD.

She went ahead and reached down to undo the brakes on it for me, when I explicitly told her NOT to.

We got to my seat, and she started in scolding me each and every time I opened my mouth.

Everything I said to her was an invitation for her to scold me like I was a school kid. Everything. Literally E V E R Y T H I N G I said earned me an immediate loud harsh scolding from her.

And at my seat, there was no TV headphone cord, no call button cord, and the huge blood pressure cuff was there instead of the small one I use.

It went sharply downhill from there, with her yelling at me that she had no choice but to work with me.

I turned myself right around and said NO….I am NOT going to treat today either if SHE has to be my tech again.

My nurse, Cheryl, was standing right there, saying absolutely nothing as I rolled myself back to where the weight machines are in the foyer.

Fortunately, my main social worker was back yesterday, so he came and rolled me into the conference room where we talked, and I tearfully pled with him to get her switched out of my pod.

He did. Johann got put down at the very end of Side A, away from me, and I got Elizabeth as my tech, who I DO get along well with.

My entire treatment went great from there. I spent my treatment watching YouTube videos on my tablet. Then General Hospital.

And at the end when I was weighing myself for my end of treatment weigh-in, Head Nurse Angel came up to me with a warm smile and apologized for how she scolded me on Weds, and we talked things out and even hugged tightly.

It turns out she does get me. That Weds was a bad day for her. And she said she does have my back.

I called Larry, my social worker, when I got home, and told him I am done working with Johann and he and Angel both will make sure I don’t work with her anymore.

THANK you, DaVita Kidney Care, for yesterday.

And, Here’s More About My Latest Dialysis HELL DAY That Happened On Wednesday

POST ONE

My open letter to DaVita Kidney Care, again,

Wednesday, March 20, 2024

How loudly do I have to shout it to the world already that I am AUTISTIC and this clinic is

still, after 6 years, inaccessible and sensorially UNSAFE for me to continue

treating there.

I AM AUTISTIC!!!!!! I AM NOT A BAD BEHAVIOR, SO PLEASE STOP THE ABA STYLE

BEHAVIORISM!!!!!!!

STOP SCOLDING ME AND ARGUING WITH ME WHEN I AM IN SENSORY DISTRESS

MODE!!!!!!!

PLEASE, I AM BEGGING YOU ALL!!!!!!!!!!!

Today, some of my team even shut me down and would not let me talk to them

for support when I didn’t have Larry or Kristen there today to support me during

the meltdowns I was having.

Nurse Cheryl and Tech Johann were very unhelpful with me today. And instead of letting me

explain and them being patient with me and willing to fix the things that were upsetting me,

they both argued with me and teased me. That was sensory NO-NO #1.

This all started 1 hour and 35 minutes into my 3 hour and 45 minute treatment, when I

urgently needed to use the bathroom because my stomach was exploding.

My machine took my blood pressure during this time, so there was NO need for Johann

to make me —- with my exploding stomach —- have to sit through yet another blood pressure

right on top of it just taking!

When my shoulder clamp that holds my lines secure to the left shoulder of my shirt

got loose, instead of fixing it, Johann made me sit there with it dangling loosely, which was another

sensory NO-NO, and proceeded to argue with me over it being moved off of me.

This caused me to yell more in frustration, because my stomach was cramping and I was being

argued with

instead of listened to and accommodated and taken to use the bathroom!!!!

Then —- even though I have great trouble getting my blood pressure to take on

the new machines, Johann forced me to sit through yet another one.

I refused the second blood pressure in a row — because I was exploding, needed to use the bathroom

NOW, and Johaan sat there arguing with me!!!!

This was too much for me, and I melted down.

Angel, head nurse, came over, not to help me, but to scold me, which only escalated my meltdown

to a screaming stage.

Angel who is supposed to have my back, couldn’t bring herself to just

come up to me ans ask what was wrong, and how she

could fix it, —- no, she chose to deliberately scold me, which she knows will escalate my meltdowns.

Johann kept moving the machine monitor without asking me first, which added to my distress.

All of the clinic noises and staff arguing with me was too much for me to take.

Then Johann proceeded to very roughly yank my blood pressure cuff off of my right arm,

did it very roughly,

and this too escalated my meltdown.

When I finally got to the men’s bathroom

—————————————————————————-

(I use the men’s bathroom because it is wide enough for me to

navigate in and out with my transport wheelchair. The women’ bathroom isn’t as wide and easy for me

to get in and out of, so I prefer to use the men’s bathroom.)

—————————————————————————-

the toilet was dirty, and instead of Nurse Cheryl

offering to let me use the women’s bathroom, which I have done before, she proceeded to unnecessarily

argue with me, telling me she doesn’t clean toilets.

I NEVER ASKED HER TO CLEAN THE TOILET FOR ME!!!!!!! STILL, SHE ARGUED AS IF I HAD ASKED

HER TO CLEAN IT!!!!!!!!

She was not thinking that she could have just simply said to me “Let’s use the ladies restroom, okay?” No,

she argued

that she was not going to clean the toilet for me. I exploded again, yelling, because I still needed to

fecking relieve

myself —— and ANGEL came up in my face again to heap yet another cruel ableistic generous

heaping helping

of grade school

scolding and judging of my “behavior”. Yet another NO-NO.

I have educated this clinic till I’m blue in the face on how to handle me when I am having a meltdown,

yet some of you continue to insist on treating my meltdowns as a behavior to scold, judge and admonish

instead of being compassionate and LISTENING TO ME AS TO WHY I AM IN DISTRESS IN THE FIRST

FRECKING PLACE!!!!!

I can’t handle dialysis anymore.

I cannot handle the early time I am forced to go in,

and I can no longer

handle the abrupt changes and the ABLEISM that I still get from

ANGEL, JOHANN, ELIZABETH, and CHERYL.

I still have a laminated list of bullet points of the DO’S AND DON’T’S of how to handle and treat me. It is still in

the drawer to the immediate right of where Nurse Cheryl sits. PLEASE take it out and READ it again.

And read it OVER AND OVER till y’all understand and get it.

I AM AUTISTIC….I AM NOT A BAD BEHAVIOR!!!!!!!!

I GO TO DIALYSIS FOR A LIFESAVING TREATMENT,

NOT TO RELIVE ELEMENTARY SCHOOL AGAIN!!!!!!!!

My comfort and feeling welcome and supported while I am there are my top priority, and the onus is on ALL OF YOU

to make sure these bullet points are adhered to!!!! Please, once and for all!!!!!

~~~~

POST TWO

Friday, March 22, 2024

5:05 AM wide awake,

scared,

with stress hives all over, and worried as hell about dialysis

so I cannot sleep again and my stomach is upset precisely because of how I got scolded and argued with on Wednesday March 20, 2024, instead of very neurodivergent autistic me being listened to, supported and them fixing the things that got me upset in the first place…..

Head Nurse Angel showed no empathy at all for me, just scolded me, and she made me cut my treatment short due to my “bad behavior” She cruelly and falsely accused me of being abusive towards Nurse Cheryl when I was having a damn meltdown!

I am scared shitless to go back to that center, because I KNOW there are staff there who hate my guts, and ANGEL, NANCY, CHERYL  AND JOHANN are some of the staff who hate me and think of me as a behavior to scold and judge harshly.

I NO LONGER TRUST ANGEL TO TALK TO, BECAUSE SHE DOES NOT HAVE MY BACK, AND NEITHER DO CHERYL OR JOHANN. NONE OF THESE PEOPLE GET MY AUTISM AND MY SENSORY ISSUES AND NEEDS. NOR DO THEY SEEM TO WANT TO GET ME AND WORK WITH ME ANYMORE.

I was fully unsupported when things went downhill on Wednesday and then was forced to cut my treatment waaaaaaaaaaaay short, which if my treatments keep being cut short like this, and I keep missing my treatments because I am too afraid to go there for fear I will be scolded and treated with behaviorism, this could ruin what progress I have made. This could even cut my life way short!!!!My ending blood pressure was 191 / 127 with a heart rate of 96.

My next phone call is going to be to DISABILITY RIGHTS CALIFORNIA to get legal assistance because what is happening to me in your clinic is medical abuse, medical neglect, and medical malpractice.

Sincerely,

Melissa Fields

POST THREE

Again, I will not be coming in today, out of fear there will be a repeat of what happened on Wednesday.

PLEASE show Dr. Poonia both of these above emails.

The cruel ableism I am still being treated with at your clinic is KILLING me!!!!!I AM TOO FRIGHTENED TO COME IN TODAY BECAUSE OF HOW I WAS TREATED ON WEDNESDAY.

AGAIN, I AM AUTISTIC…..I AM NOT A BAD BEHAVIOR!!!!

And some of your staff do not give a rat’s ass about me.

Sincerely,

Melissa Fields

And Yeah, My Dialysis Nightmare Continues Because They Can’t Stop With The ABA Style Behaviorism

So, I’m missing another dialysis treatment today because I am too frightened to go there for my lifesaving treatment and get argued with when I have a need, and instead I get scolded and judged when their unwillingness to accommodate me results in me having a meltdown.

I am AUTISTIC….I am NOT a bad behavior, so stop giving me ABA style behaviorism when it is your staff who causes me to have those meltdowns.

I’m sick this morning because I’m still upset and hurt because of how some of your staff treated me on Wednesday. I really want to quit dialysis because I feel every level of miserable, alone and unsupported while I am there.

I have emailed this clinic hundreds of times to educate them about my autism. I’ve been going to this clinic for the past almost six years. They should all know by now that to scold and lecture me when I’m in the middle of a meltdown — or any autistic person who is having a meltdown —- is like pouring literal gasoline on a fire.

#DisabledNotLessThan

#MedicalAbleism

#AmericansWithDisabilitiesAct

#MedicalAbuse

#ItsAMeltdownNotATantrum

News Channel 3-12

DaVita Kidney Care

Disability Rights California

The Arc of California

Heartbroken And…Done

Dear DaVita Kidney Care, NBC News, NBC Bay Area, ABC News, ABC7 News, Disability Rights California

Life as a 63 and a half year old autistic adult who has never been able to work, who has never ben able to get married or have children of their own. Whose siblings, nieces, nephews and aunt all treat as if I am a horrible pariah. Who has longed to see New York City and the Northeastern US ever since they were a child…..and who has still never gotten to visit those places.

I have come to really hate dialysis because I just lost my best dialysis neighbor Berta who passed away on Christmas Day, and now Nancy a tech there who I adored, has turned against me and treats me so horrible now.

I no longer feel like I am supported at dialysis. I feel as though they are all tired of me, even though it is they and the noises and that clinic that causes my meltdowns.

I hate what my life has become. I am devastated, heartbroken, and have lost all hope and joy as of today because of the never ending poverty, loneliness, and being always stuck in my home….no one can blame me for feeling this way.

I sincerely want to quit dialysis. I am sick and tired of explaining over and over to people who should understand but who refuse to about my autism and why I have so many meltdowns.

It is because of people who refuse to see and hear me, who refuse to listen and believe me……or to believe…..in the me that I am.

I am sincerely D O N E……

To President Joe Biden, House Democrats, Senate Democrats, NBC, ABC, my family, and everyone who needs to finally care

This is an open letter too the public…..

To the news media MSNBC

and NBC News

To our President and the House Democratic Party & U.S. Senate Democrats

And to my kidney center

DaVita Kidney Care

Hi I’m Melissa and I have been disabled my whole life

and

my life is hell today

I am 63 years old now

I am

Autistic and multiply-disabled

I have never been able to work my entire life

because of

the numerous sensory issues I have

mainly with being able to handle interpersonal interactions

with people

when people are unfriendly and rude

and when I am mocked and gaslit and made fun of

I shut down

and I have meltdowns

severe screaming meltdowns

I have never ever been able to ignore

unfriendly rude people

and it crushes my whole world

when people don’t accept and like me

and they gaslight and mock me

bright lights and flashing lights also greatly trigger me

certain loud noises also trigger me

harsh environments also trigger me

authoritarian environments trigger me

and I also have great difficulty with executive functioning

and anxiety

and being overly pressured to

rush and hurry

and go at other people’s paces

I am also quite easily distracted and easily flustered

This stress causes me to have painful sick stomachs and I just….

shut down

I do happen to love people

but people who are

genuinely, G E N U I N E L Y

open and compassionate,

warm and friendly

who know how to use friendly humor with me,

people who care,

people who like the unique me I am

people who treat me as the human being I am

I hate life though

because most people do not get me

or even want to understand me

or like me

the way I need to be understood,

accepted and liked

I had to stop driving in 2012

because of a mean neighbor who

was a friend but

he cruelly turned against me

all of a sudden

for no reason at all

and my declining physical health

lymphedeema, and a large lymphedema lump on

the inside of my left thigh

since then I have had to rely on in home

caregivers

most of whom were also abusive

and cruel to me

It has not been a good road for me

And now the icing on my cake

is that I have been on kidney dialysis

for the past 5 and a half years

And dialysis is hell on earth because….

I can’t do high school again

High school was very traumatic for me

and this is what I have to put up with at dialysis

and they won’t fix this

there is now a tech there who has

suddenly turned against me

she used to be so nice to me

now all of a sudden she refuses to even say hi to me

and she now cruelly laughs at me

when I try to hide my face from her

yes, there are certain dialysis techs and nurses

who have been and are quite mean and rude to me

there

some of them actually mock and make fun of me

they won’t even speak to me anymore and

they won’t listen to me or believe me

and I am in hell when I have to sit there

trapped in that hard cold dialysis chair

for my 4 hour

literal hellscape

sensory hell

treatments

in an environment where some are so mean that I

so dread going there again

Moneywise, I don’t even ever

have enough money to live on anymore

and this has gotten worse

in the almost four years since COVID hit

I can barely afford my groceries, neccessities

or my monthly bills anymore

I am seeringly L O N E L Y

I rarely get to go on outings

even to the ocean / beach

I miss the trips to Solvang and Santa Barbara

that I used to take with my mom, grandma and nice sister

and the trips I used to take to visit a kind old lady

who was my friend

who lived up by Yosemite

in the early to mid-’90’s

I miss the two times I got to visit Las Vegas with

my nice sister in 1982

and the trips I got to take to

college town Bloomington Indiana

in 1983 and

Milwaukee Wisconsin in 1989

I miss all of the hope that I used to have for my adult life

I never got to marry and have children of my own

I used to and still do long to be on TV acting in

a sitcom or on my favorite soap opera

General Hospital

I still long to be a freeform

alternative rock radio deejay

I still have never been to

my dream city and state of New York

Nor have I never been to see

the beautiful New England states

or Philadelphia

Or Washington DC like I have also longed to do

my whole life

I am so miserably unhappy

when I was in my 20’s and even my 30’s

and my 40’s too

I had so much HOPE for my FUTURE

But instead I have lived stuck, trapped

in a never ending cycle of lost dreams

and lost goals

and poverty

Most of my family

with the exception of my mother

and one of my sisters

still treat me like I am a pariah

I so wish they would understand and start caring

about me

I am not a monster

I am A U T I S T I C !!!!

The sun may be shining brightly

on nice warm sunny days

but most of my days are cold

deep inside my bones

and so grey

and so lonely

my whole body aches

I know I stim

I have lots and lots of stims I do that

comfort me

and that help keep me

calm and regulated

many of my stims are singing

to the rom acoustics and

I call those stims

my chestnuts

I also make other unique noises

I also love shiny hair

and shiny things

and to be able to enjoy

beautiful sunsets,

beautiful sunrises,

beautiful rainbows

and the big moon as it rises

I love the ocean too

The way it smells of fresh salt air

I love to watch its waves

and to listen to those waves break upon the

shoreline.

Those who do like me see me for the me I am

but those who like me

are

sadly

so very few and far between

and this never ending grey day existence

is making me

too tired to go on

now that I am 63 years old

I feel so old,

like I am in my 90’s instead of 63

I just want to fall asleep

and not wake up again

it’s so unbearable

I wish I could find more compassion in this world

I wish I had enough money to both live on

and also be able to buy myself my own home

and to have enough so I can enjoy life

and to even save up for the trips

I’ve wanted to take my whole life

and be able to have enough left over to help

my friends who also struggle

This is really getting me down

more than anyone can know

I wish more people would care about me

and the plight of all disabled folks

who like me, also cannot work

and who have to navigate these harsh meager

safety net systems

that keep and force us

to live our lives

mired in

poverty

hunger

loneliness

isolation

unmet wants, dreams and goals

and unnecessary red tape rules that

further

limit

and

trap

us

in a never ending prison

Tomorrow is a new year.

Please

Will people finally care about me

who

have the means

the power

and the heart

to help me

an my fellow disabled friends

so we too can not just

barely exist and survive

but we too can

actually thrive and be free??????

I am asking because

we disabled folks are human beings

and we vote and matter too.

And to the tech who was my friend at dialysis

who turned against me so suddenly

I ask, can I please

have your friendship back please.

I miss the fun goofy rapport we had

I cannot understand why you have turned

so rude

so mean

towards me

It would mean the world to me

if you would please have mercy on me

and be nice to me again.

Thank you to everyone who has listened

to my words today.

My fervent hope and prayer is that 2024 will be the year

that we can see

positive change for our neighborhoods,

our communities,

those who are elderly, disabled,

and all who are marginalized.

So that no one is left

anymore

to flounder and drown.

An Open Letter To My Entire Dialysis Clinic Staff

Hi, I am Melissa Fields. Please allow me to re-introduce myself.

I am a 63 years old verrrrrrrry Autistic, verrrrrrrrry neurodivergent elderly adult.

You cannot change, fix or cure me. I am autistic. I am not a monster.

I come with many quirks, sensory triggers and sensory challenges that I can do nothing to help

because of how I was born wired completely differently from all of you, from the top of my head,

to the tips of my toes.

No one can cure or fix or problem solve an autistic person, and to even try is abuse,

precisely because of the ingrained genealogical way that we autistics are wired.

Yes, Autism is genetic. It is NOT caused by vaccines or any other environmental factors. It is our ALL.

And, autism does run in families.

And —- it is NOT a bad behavior. When we meltdown, it is because we have been thrown into

sensory overload by the bright lights, some of the more loud piercing alarms noises there, and by

being yelled at, blown off, and ignored and talked to in demeaning tones of voice that tell us

that we don’t matter to you.

This is why scolding us and yelling at us when we have meltdowns, and putting us into behavioral-based,

compliance-based interventions such as ABA therapy, is abuse and causes those of us autistics

who undergo ABA

a lifetime of deep seated Complex PTSD trauma, self doubt, and low self esteem that is debilitating,

and many of us have

s**c*d*l id**tions and want to d!3, because of the hell we go through thinking we

always have to mask (hide) our autistic traits

so we can be accepted in your non-autistic world.

We are unable to.

ABA can only help autistics to hide our true authentic selves, and that isn’t healthy.

ABA is a therapy which was invented by Igor Lovaas, was a very bigoted man

who hated neurodivergent people,

and he hated LGBTQIA+ folks too,

so he came up with both gay conversion therapy and ABA. Google it.

Having to mask / hide who we naturally are takes tons of energy we don’t have,

and it eventually will come out in a meltdown. And it will negatively impact the rest of our health as well.

I know, I grew up in an unsupportive family and was bullied, taunted and shunned all through school.

That was my own kind of ABA therapy.

And again, ABA and any kind of behaviorism is A B U S E.

There are many therapies that are not ABA, that will not harm an autistic person, that can teach those of us to use

AAC devices if we cannot speak, and that come alongside us to gently teach us how to navigate a world that

is not made for us ….while preserving our natural tendencies to stim, and that affirms and respects our

sense of self,, our personhood and bodily autonomy.

If any of you have your children in ABA —- please, for the love of God Google why ABA is abuse,

and get your children out as fast as you can.

Dialysis for the past five years at your South Depot Street Davita has been agony for me

because of the people on your team who have refused to help me, refused to understand,

and they go out of their way to make me feel mocked, Othered and seen as Less Than.

And they have treated me to dehumanizing yelling, and even refusing to assist me when I need it.

I still remember vividly when three of my past nurses used to deliberately shorten my treatments,

which damn near killed me.

Yes, I do loudly sing to the room acoustics and make other loud stim noises. But that helps me to

stay calm and regulated during my treatments. I also do it because most of you seem

to enjoy my noises and singing — and so do many of my fellow patients.

My machine is an imaginary friend who I have made up for my comfort during my treatments.

This is why I freak out if any of you move my machine monitor away from my view.

Her name is Rebecca. And she does comfort me a great deal during my treatments.

I also suffer from both bladder and bowel incontinence and Irritable Bowel Syndrome —–

and to make me wait to be able to use the bathroom is also abuse,and will result in my kidneys

going back into decline.

I’m not there to cause problems …… for any of you. but if I feel as though you don’t like me

and are mocking of me, yes, that too will add to my distress.

I want to feel welcome there, or I cannot feel comfortable going there anymore. I also suffer from

deep-seated Rejection Sensitive Dysphoria, and when a staff member who is usually friendly to me

suddenly stops speaking to me, acknowledging me, and doing my noises back to me,

that literally is soul-crushing to me no matter what the reason is for it, I still take in other people’s moods as

it being about me, and that you no longer like me.

It will ruin my whole week, my whole weekend….and now my whole Christmas has been ruined

by some of your staff

who were rude to me on Friday.

I am extremely sensitive to

how people treat me and talk to me

people’s moods

the bright lights

the always ice cold air that blows on me

when the TV doesn’t work

when I don’t have my TV cord, call button and blanket on me

the bathroom call button noise

Rebecca’s monitor being moved away from me

abrupt changes in my routine there

new nurses and techs who don’t know me

aaaaaaand…….not being able to at least get down off of my dialysis chair

because a tech can’t even be bothered to just move the stool out

from under the leg rest so I can get down to wheel MYSELF into the bathroom

when I need to fecking go NOW or I will have an accident in my pants.

Please —– when I come there, please start seeing me as the human being I am.

Please don’t ignore me, shun me and blow me off.

Please be kind, friendly and patient and go at MY pace.

Please listen to me, believe me and see and hear me when I tell you a thing is a problem for me.

Please, above all, stop hating me for being the neurodivergent AF soul that I am.

Sincerely,

Melissa Fields

Friday’s Hell At Dialysis Was Over The Top And I Do Not Want To Ever Go Back There

Another shitty AF day from HELL today at dialysis…..

What I just wrote to my entire dialysis clinic just now……

“I AM AUTISTIC, ONCE AND FOR ALL, AND I REQUIRE WARM, FRIENDLY, PATIENT, AND CARING, PERSONABLE TREATMENT FROM ALL OF YOUR STAFF….IF THEY CANNOT TREAT ME WITH RESPECT AND LIKE THE HUMAN BEING THAT I KNOW I AM, I NO LONGER WISH TO BE TREATED IN THIS CLINIC!!!!!!!!!!!

I NEED FOR ALL OF YOU TO PLEASE START TREATING ME LIKE A HUMAN BEING WHO MATTERS, AND LEARN TO UNDERSTAND AND ACCEPT AND WORK WITH MY AUTISM, OR I WILL HAVE NO CHOICE BUT TO QUIT AND JUST LET HOSPICE COME IN TO HELP ME TO D!3 WITH DIGNITY.

What happened today …… makes me utterly want to quit dialysis and never come back.

What happened today has literally ruined an already shitty Christmas for me. I could not even bring myself to accept Nancy’s pillow. She has been deliberately ignoring me and being very aloof, cold and distant with me since the day after Thanksgiving. For NO REASON AT ALL.

Friendly and warm to everyone else, but cold and snippy towards me.

The EAR-PIERCING bathroom alarm, and then being literally and very rudely yelled at and refused help / assistance by Nancy when I said to her that I urgently needed to use the bathroom or I would wet my pants, are two things I cannot tolerate anymore.

She totally had the time and ability to just get me down off of my chair so that I could go to my chair and wheel myself into the bathroom, and she very loudly and rudely refused to help me and yelled at me to be patient.

I have (personal info), and when I say I need to use the bathroom, I really need to use the fucking bathroom!!!!!!!!

And then when I said I was quitting, someone on Side B began to clap and yell over and over “YAAAAAAAAY!” “YAAAAAAAAAAY!” “YAAAAAAAAY!”

At this point, I seem to be making more enemies there, so either I need to just quit altogether, or I need to be transferred up to your North Broadway Davita clinic.

I know I flipped Cierra and Mariel off last week….and I shouldn’t have but again, they have been mean to me, and sometimes my emotions get the better of me…..but it is no reason for Nancy to hate me, as until now, I never had any issues with Nancy. But I guess me flipping off her friend Cierra has turned her against me now too!

I wish you all really knew how hard it is for me to go there just to stay alive. This clinic does not work well with autistics and our sensory issues and I feel you CAN do LOTS better, because when I first went there you all used to do that lots better.

If I have to go back to this clinic, Nancy is going to have to be nice to me, and so are Cierra and Mariel. Or, seriously, they should be fired if they cannot stop discriminating against those of us who have invisible disabilities and be nice to everybody there. I have personally seen them all laugh at and mock certain patients, myself included.

It is highly dysregulating to have to sit trapped in my chair when my bladder is screaming at me and I am about to wet my pants, and to have Nancy coldly yell at me to wait.

But I know neither Nancy, Cierra, or Mariel give one single fuck about me.

I am done. I really and truly am. I want to be sent another email survey, so I can fill it out and let Corporate know how this clinic likes to handle their autistic / neurodivergent patients and treat us like we are Others, Less Than and like we need cruel ableistic behaviorism instead of accommodation, compassion, patience and warmth.

I mean it….I am Done, DONE, AND DONE.

Sincerely,

Melissa Fields “

What I commented on one post on my kidney center’s FB page that was from a patient who recently passed away who had my back when staff or other patients would give me needless grief……

——-

Darlene was one of the few people at Davita Santa Maria, who accepted and loved me as I am, and now she has passed….ad I miss her so, so very much.

You know why? It is because she always had my back when people didn’t understand me and my needs and was given grief over it. I’m Autistic, you see.

She, alongside Nurses Lauren, Cheryl, Sara, Lailani, Lynette, and James, ex-facility admin Nicole, ex-social worker Shari, current social workers Larry and Kristen, and techs JoAnn, Jamie, Elizabeth, Lydia, Lucy, Wendy, Veronica, Rose, Hazel, Alicia, Bre, Laurie, plus patients Gary, Tony, Berta, and a few others…..

You all get me and my autism and sensory issues, and never get angry at me and turn against me. You are always consistently friendly to me, and work to see that I am comfortable when I have to spend 4 long hours trapped in a dialysis chair so I can stay alive.

It is next to impossible for me to handle having to go to dialysis in a clinic that is not set up to be a comfortable and sensory safe place for those of us who are Autistic / Neurodivergent.

You know, us autistic folks do dialysis too…and our accommodation needs are very real.

We have as much right to this treatment as everyone there.

I do stim vocally during my treatments, but that is so I can try to keep from having meltdowns.

My accommodation asks are for a valid reason…to keep those meltdowns from happening.

When I am yelled at, blown off and made to wait to use the bathroom…..like what happened today…..I cannot do that. Nor can I be expected to *have* to wait when my bladder or #2 has to be taken care of….NOW.

I do not go there to cause any trouble, yet I do have meltdowns there, because there are some of your staff who clearly don’t get me or understand, nor do they like me. These staff members have routinely gone out of their way, especially when I was in the ISO room, to mock, taunt, and gaslight me.

I am wired differently and do not possess the filters to be able to handle a neurotypical world that is way too harsh for me as an Autistic person.

Today I had very severe meltdowns because I got yelled at and told to wait to empty my screaming bladder that I held in my entire 4 hour treatment.

When I snapped and said I won’t be coming back, two people on Side B actually began to clap their hands and yell “WHOOPIE!” and “YAAAAAY!” over and over.

To those there who dislike me, I am not a monster, nor am I a crazy lady. I….AM…AUTISTIC. And I come with a lifetime of severe C-PTSD trauma, and many, many sensory triggers and sensory issues that, again, are very real to me, and can be debilitating if I am forced to have to endure those sensory triggers.

To you who were so unkind to me today….a hearty thank you for effectively ruining my Christmas this year……

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Dialysis Hell, Here We Go Again…!

I am finding myself once again wishing to God I did not have to do dialysis anymore because of the toll it is taking on my mental, emotional and physical health. I cannot sleep at night, and am in a consistent state of mental chaos having to continue to deal with the ableism and refusal to accommodate my support needs at my lifesaving vital dialysis treatments that I am forced to go to if I care to live.

Each time I have a bad experience at dialysis, my poor caregivers suffer, because the meltdowns I have at Davita do not stop after I leave your clinic after one of my bad days there.

Bad days that **can** be mitigated. I repeat: bad days that **can** be mitigated.

I have told all y’all how to mitigate these meltdowns, and shit just keeps happening that sends me home in full-blown mental emotional sensory hell. Which gets straight on projected onto my caregivers. Because I am unable to hold my state of sheer sensory upheaval and distress IN.

Yesterday could have been mitigated. Just by Angel letting Nurse Jenni K. go ahead and put me on the damn machine. But no, She forced me to work with a nurse I had never worked with before in my life. It was early morning for me, and that early in the morning, I am not gonna have the spoons (energy) it takes for me to get to know a strange new nurse and tell them all about my put on routine.

Again—my autism is a disability. A disability that comes with meltdowns if I am forced to march to all y’all’s neurotypical beat when I am unable to do so.

I am asking you all to once and for all take my autism seriously, as accommodating me will make me be able to continue on with my hemo dialysis therapy. Otherwise, I am seriously contemplating quitting and having Hospice come into care for me.

Angel, you always tell me you love me, that I am beautiful and that you have my back. But you did not have my back yesterday. And the results were a spectacular fail—for all of us involved. There’s a good reason for my trust issues, and If I cannot trust my care team at dialysis, this won’t work for me.

Below is the post I wrote on Facebook last night, because guess what? I was unable to get to sleep until after 2 AM this morning.

Please, for the love of God, take my autism disability seriously, once and for ALL. PLEASE!!!!!

My post:

I usually watch General Hospital at about this time. (I began writing this post at 10:00 PM tonight and it is now 12:14 AM).

I am not doing so tonight.

Instead, I am still wide awake, binge eating bomb popsicles and playing over and over again today’s—now yesterday’s—horrible tapes of all of the hell I was forced to endure at dialysis today / yesterday.

I STILL can’t calm down. I am hot, so I have the A/C on, and this stress is also affecting the vision in my left eye. Lately when I get highly upset, my left eye gets blurry / double vision in it.

What’s it going to take for all y’all non-autistic folks to realize that autism is a D I S A B I L I T Y and not a B R A T T Y B E H A V I O R? I can’t take my autism off wherever I go. It goes _with_ me. My autism is a part of _all_ that I am and do and say and think and experience.

My autism requires certain accommodations. I’m 62 years old, and old enough to K N O W what works and does not work for me and the way my entire body is wired neurologically.

I went to this day’s treatment and **everything** was changed. For one, I found out the tech I loved, Bre, no longer works there. I didn’t have the other tech that I usually have, either–his name is Robert, and they had him working on Side B today—-and I also had a new nurse, a traveler, who //only just met me// the last time I was there.

He was working my side on my last visit, but was not my nurse that day.

I don’t do well with abrupt and sudden changes, and this threw me literally for a loop. Right off the bat.

I got to my machine and found no call button and one of the big blood pressure cuffs instead of the small teal-colored one I use that is comfortable, that goes just above my right wrist area.

That upset me.

Then this new nurse turned around and very curtly introduced himself to me, and I just _froze up_. I couldn’t do my treatment if I had to go through and have to use spoons I really didn’t have this morning, to explain to him how to tape down my shirt and then do my catheter and machine and blood pressure cuff and etc.

I began to panic. And then panic and panic. AND panic.

My old nurse, Jenni K., seeing how distressed I was, came over, offering to put me on the machine. That made me happy! I calmed down, ready to get put on the machine so I could dialyze and get it over with.

But then the head nurse, who is usually very sweet and understanding with me, seeing that Jenni was going to put me on, even though she could see how happy it made me, shooed her away, saying curtly that I would _have_ to deal with the unfriendly strange new nurse today.

I said “Oh HELL no, no, no, no, no!” and went back in my wheelchair and called Connie to come pick me up, that I was not going to do my treatment today under these circumstances.

I went on and on pleading with them to get my social worker to come help me.

Oh well—I missed Friday because of severe stress and anxiety due to last Wednesday’s shitty dialysis day and that same afternoon’s doctor appointment, so what’s me missing today too? /s

When the new nurse heard me talking to Connie on my cell phone, he suddenly softened, and said he wanted to work _with_ me and said I could tell him how I wanted everything to be done and he would do everything as I directed him to do.

Well—that_didn’t_happen.

I called for my social worker to be there at chairside for me. He was unable to come at first. So I was a hot mess trying to tell / explain to this new person how I like everything done.

Things did not go well at all. He lifted my leg rest up to get my feet and legs up in the reclining chair, but he only lifted my legs up by the addition part, not the actual leg rest that is underneath the leg rest add-on, and that set me off into a whole new meltdown.

Then he entered my prescription in wrong. I had told both him and the tech who brought me back, I only wanted them to remove _1_ kilo_of_fluid because my body cannot handle them taking off too much fluid at a time—and he went and put in _1.4 kilos_!. I said in sheer alarm: “NO, I do NOT DO that much!”, and he began to argue with me that the 1.4 was the norm.

I snapped and told him I knew my own fucking body–that I’ve been going there for 4 years now, and I knew how much I could handle and to fix it.

It did get fixed.

But then there was no heparin in the machine. I played hell trying to tell him to set my heparin at 0.7.

He finally did, and then when he went to tape my shirt, he began to tape the tape right onto my skin! Another no-no-no-no-no-no-nooooo!!!!

The blood pressure cuff the same thing, he kept putting it on my arm wrong with the lead of it stuck in my chair, which I HATE, because it makes me feel even more stuck in my chair to not be able to freely move while I am on the machine.

I did not get put on the machine until 10:25, and I came at 9 AM for my normal put on time of 9:15. I was not even taken back to my chair until 9:25.

At 10 AM, my assigned tech came…it was Cheryl, another young lady who I like, so that calmed me down somewhat.

I got to finally talk to my social worker, who said he would have a talk with the head nurse about how my get on went this morning. He said he would also find out what I would be in for when I come for treatment on Wednesday.

On Wednesday, I will start with Nurse Sadat, another nurse I have worked with who I like, and then my regular nurse Lauren will be on at 10. I will again have Cheryl also at 10 AM— but he was unable to find out what tech I would have before Cheryl’s clock-in time.

Larry, my social worker sat with me and I also got to talk to the head nurse and tell her how much I want to quit dialysis, because I can’t handle all of these changes. Her sweet side was back.

I still wish she_had_just_let_Jenni K._put me on. if she had of let Jenni put me on, I would have gotten put on at about 9:30 instead of 10:25.

I got 3 hours and 35 minutes of my treatment done, but ended up having Sadat take me off the machine. Because during my treatment, I noticed the new nurse, who had a runny nose, which he kept pulling his mask down to wipe—with his hand—and he never bothered to use hand sanitizer or wash his hands afterwards, and went onto handle other patients’ access ports and machines. With his germy hands.

Another HUGE pile of no. I was not about to have him touch me again after witnessing his poor hand hygiene. And then end up in the hospital with sepsis again—on my chest port which goes straight into my heart! Which could kill me!

I told the front office that I am requesting to never have this man as my nurse again.

And well, it’s past midnight now, and I still just can’t fucking calm down.

This clinic needs to hire more people who are actually caring, patient and compassionate human beings, because I am sick of having to go do a lifesaving treatment when I never know what kind of land mine I will be walking into when I go there.

Thanx to all who took the time to listen.

Sincerely,

Melissa Fields