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

Dear Family

Really feeling like I have never truly gotten to live my life the way I have wanted it to be.

I feel it soooooo deep in my bones, and it hurts.

I have so many regrets and what ifs always going through my head, till it hurts, and the rivers of tears won’t stop.

I am depressed and dejected that none of my siblings, nieces, nephews, cousins or aunt, with the exception of two of my sisters and my mother, see me as the human being I am, nor have they ever cared about me or wanted to accept me.

It hella sucks that they all shun me as if I’m a bad plague.

(Yes, folks, I did make peace with my eldest sister this week, so I have her back in my life again.)

But I have so many siblings, nieces, nephews, cousins, and an aunt who are like literal S T R A N G E R S to me, and it shouldn’t be like this!

I can’t help it that I was born autistic. But I was, and my autism is very much a part of who I still am, and will be till the day I leave Planet Earth. I am actually proud of my autism. Why not? It is what makes me the unique, creative, funny, goofy soul I am today.

I still long to visit New York City, all five boroughs, Long Island, the Hudson River Valley, the New England states, Philadelphia, Washington DC, Michigan and Eastern Canada.

I want to win big in the lottery, big enough to set myself up comfortably, and still have lots left over to be able to help others who are in similar situations as I am in.

I cannot go out and get a job because of my sensory issues with noise and changes, bright lights, and harsh rude people. And because of my lymphedema and kidney disease. So I hope on the lottery as my ticket out.

Yesterday I learned that one of my cousins passed away. In May 2018, I also lost my eldest brother. The d3@ths of my eldest brother and now my cousin, has made me think alot more about how I am still shunned by most of my family and relatives.

It seriously shouldn’t have to be this way.

Dear family, my door is wide open if any of you want to call me, message me or come visit me, and we can talk. I want to talk and heal from my past….I need that closure, and I need all of you to freaking C A R E about me as the authentic, unique autistic human being I am.

Y’all sadly have always thought of me as a “problem” and a burden and penance my entire life. Y’all never gave me a fighting chance to get to know me, because your hatred and prejudice towards me always got in the way.

I pray this prayer this very night, that this post will get to all of you, dear family, and this will finally soften your hearts towards your sister / aunt / cousin / niece….and you will finally open your hearts to me.

Please…I need y’all.

I Love My Family, Believe It or Not…And What’s Made Me Not Be The Fun Me Y’all Thought I Was?

It’s been almost one year since I got a nasty, hateful, and hurtful mean Easter letter from my eldest sister….and it still hurts. Those harsh words can never be taken back.

I wish I had kept that letter for my records. As proof of what I had to endure growing up….and as proof of how my eldest sister seemed to still feel about me after all last year.

Those cruel words that she penned to me ….. can never be taken back.

To my eldest sister, I got your newest letter today. Thank you for the Masses you are having said for me, thank you for the beautiful card, and for your kind words.

And yes, I so remember when you lived here, when you would come to Santa Maria and we would go out to eat at a restaurant of my chosing. I enjoyed our visits, and I especially enjoyed the time I drove to Buellton an met you at AJ Spurs for my 40th birthday. That is one of the few happy memories I cherish in my almost 64 years on Planet Earth.

I still love you, my dear eldest sister. I love you, and I love all of my siblings, nieces, nephews, cousins, and even the aunt who also has nothing to do with me.

It hurt so much and so deeply when you penned me that letter full of hate last year. That is why I foolishly ripped it up. I didn’t want those words to stay in my house.

If you have to ask why I’m not that “fun” Melissa anymore, you haven’t read my blogs that closely.

My downfall happened in increments, first with me moving over to live in one of my family’s cottages, where two mean girls began to taunt and torment me. And then, when you would come take me out to eat, I was still in decent enough health.

My full downfall began when the lymphedema started on both of my legs (2005), and then when my professed Born Again Christian ex-neighbor who was supposed to have my back, suddenly turned on me (March 2012), which caused me to shut down so much, I had to give up driving, and give up my little car that I loved.

With all of that, went what little freedom Disabled Autistic me once had. I began needing in home caregivers, who have sadly all been nightmares, —- except for Connie and her daughter Natalie. Before C and N came into my life, and when C went back to work for a doctor, I went through more literal hell due to a long string of abusive caregivers …… which has effectively taken all of the fun out of my life.

Why so many mean caregivers, you may ask? Is because I’m autistic, and most people still look at us through stigmatized eyes that only see us as burdens, too needy, too complex, and Less Than.

These caregivers yelled at me, mind fucked me, stole thousands of dollars I had saved all up in a rainy day kittie, as well as most of my books, music CD’s, DVD’s, clothing, and lots of other personal possessions that all mattered to me. This is why my credit cards are still maxxed out, today.

Dear Eldest Sister, I think I might still have the two coffee table books you sent me on New England though. I would have to go through my bookshelf that’s in my bedroom to see for sure.

In addition, all of these lived experiences I’ve had, from birth to now, have made me wake up to the state of our world around us, and it has made me evaluate even my own gender and sexual identity. My lived experiences have made me even more empathetic to the plight of other Disabled, Black, BIPOC, elderly, LGBTQ+, and all who are marginalized.

I stopped voting Republican because of the Tea Party and how they all mistreated and disrespected our then POTUS Barack Obama, and when Donald Trump and MAGA came along, it permanently severed what ever ties I once had to the Republican party of my childhood. It hasn’t been my father’s Republican Party in at least 20 years.

From the Tea Party on, today’s GOP looks the other way as children and adults alike continue to get slaughtered by AR-15 style weapons of war — at school, at shopping malls, grocery stores, places of worship, you name it, no place is safe anymore, and in addition, they want to strip women, LGBTQ+ people and Disabled and elderly people of our rights and the social safety net we depend on.

That to me, ain’t fair at all…in fact, it’s cruel, and I cannot as a still devout Believer in God, Jesus and the Holy Spirit, support that kinda shit.

I have never been into racism and bigotry, even when I was growing up, I hated hearing my siblings denigrate others on the daily, just because their culture was different, or they had a different skin color, or they were Hippies. Or Disabled.

That was what I grew up on: a steady diet of bigotry and intolerance.

To my eldest sister, I am still fun, you just don’t get to see it anymore, because you don’t even call me, or email me anymore, and you don’t see how I interact with Natalie, Connie, and most people at dialysis who all love and adore my noises, my unique Melissa language, my unique warped sense of humor, and my shiny hair fetish.

My life has changed drastically. It changed when…..

In 1992 when the two Mean Girls next door to me suddenly ganged up on me and got mean with me, tormenting me with their bubblegum music and mean shrieking in my windows….

When that man who lived next door to me who was supposed to have my back, suddenly turned ugly mean in March 2012….

when the Brother Sister caregiver team were my caregivers from June 2018 to June 2019 and they began their daily habit of mind fucking me and stealing money and things from me…..

Add to this, abusive Nurse W at dialysis……

It’s called C-PTSD TRAUMA……

And since COVID, prices on electricity, natural gas, and groceries have skyrocketed ….. leaving me left behind, and in even deeper debt …. debt that I am now drowning in.

Again, I cannot just go out and get a job, because I cannot drive anymore, I’m on dialysis, am still disabled, and I am going to need some sort of security when my mother passes away so I can still stay connected and in touch with the outside world. I also need a roof over my head that I can’t get kicked out of.

If I don’t win a lottery, the only way out for my life is to have the family put these two cottages where I live, in my name, so I can collect the rent from next door. Out of that, I can pay my living expenses (including my TV, and phone) and the taxes and upkeep on these two homes.

In closing, I pray for all y’all, every day that I think about praying. But I am so physically and mentally tired these days, that praying has become harder for me. Writing and drawing have become harder. Everything has become harder, because I live with the thought every single day that I am an outsider in my own family, that I am a pariah, and none of you get it that I was born AUTISTIC ….. which is a disability I cannot and have never been able to help.

I live with the thought every day that I will probably die without ever realizing any of my lifelong dreams and goals.

Being alone, lonely, and without hope …. are what kills people well before their time ….. and it has already overtaken me ….. so please don’t lament on how unfun I now am and instead, see my plight and have mercy on me and find it in your hearts to finally stop turning your backs on me and help me.

Thank you. ❤ Melissa ❤

Thank you, Eldest Sister, for your kind letter too today. And again, for the Masses you are having said for me. ❤ ❤ ❤

More Poetry From Lonely Me, Hurting Because No One Really Cares

The sun wants to come out today

The sun really wants to come out today

But it is fighting the battle

Between darkness and gloom

And sunshine and Hope.

~~~

You thought of me as a burden

Yet when I died

You cried the hardest tears.