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
All Four Hours of It.
Stop Taking That Away From Me
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.