Tag Archives: Autistics Speaking

When You Fail To Understand

When you fail to understand that my Autism does
very much define me
When you do a something without realizing it can be a trigger for me
When you do things without asking me first
Change things on me without my consent
Or change my things around without asking me first
When you yell at me, scold me,
talk over me and then assume and judge me wrongly
then leave it all unresolved for me
No closure, just walk out on me
I am up all night crying
thinking the worst
and wanting to literally run away from my own home
At the same time i am begging for God to take me
I am not the monster you think i am
I do not act and react to manipulate and control other people
I have alot of sensory issues, many are inherent to my autism
But many are and have been brought on by a lifetime of trauma after trauma
I act and react because i am triggered
because my brain is wired differently than yours
Please, for the love of God, understand that
When upset and in distress, i am going to write about it
To educate you and others
And to help me to process through my time of upset and distress
It is NOT to slam anyone personally
It is not just because i want to hate
and put that someone or
someones on blast
I just have to write
Because i need to be heard
I need the world and those i care so deeply about
that still seems hell bent on misunderstanding me and making
us autistics out
to be the villains we know we are not,
then silencing and trying to fix, cure and erase us
To hear my words that come from my very heart and soul
THAT, my friends, is why i write
The things i am not
I am not just a “negative person”
I do not hate myself
I am the way i am due to a lifetime
of my autism being misunderstood and judged way too harshly
And me being rejected by others over
and over and over again because of my autism
I am not ungrateful
I am not selfish
I am not rude
I am not bad
I am not a terrible horrible awful this and that
I AM AUTISTIC AND I AM DOING THE UTMOST BEST THAT I CAN
WITH THE LIMITED TOOLS I HAVE IN MY TOOLBOX.
Advertisements

An Open Letter From A Friend

The following is from an anonymous friend who wrote this in response to some struggles i’ve been having for awhile now. I am posting this here, for educational purposes only, to help readers gain knowledge and understanding of what being a real friend, support person, etc., to an autistic person is….how to really be here for us, how to show UP for us, how to really have our backs.

I hope this will help any of you reading this who also struggles with friendships, and maintaining friendships because a non-autistic friend does not understand. I still to this day struggle in my relationships with all people, both autistic and non-autistic, because of so many sensory issues and a lifetime of trauma i sadly, have yet to heal from.

It doesn’t make us bad people. It’s because so many people today still don’t get it that autism and autistic people are not a behavior issue to be scolded and fixed and cured. Autism is a real and valid disability.

I urge you to read this in a quiet room, with your entire attention, and then pass this on widely, because on behalf of myself, an Autistic adult, all of my fellow autistic friends, and all autistics in this world, it is time for the non-autistic world to stop seeing us as the tragedies and burdens and monsters that we are not.

Hey *******,

I am an anonymous friend of Melissa’s and wanted to reach out to talk to you. She says that you are wanting to learn more about autism and how to support an autistic person like Melissa.

Like Melissa, I am also autistic and I think I can help you to understand a little bit more if you are willing to listen.

First, I’d like to say that as her friend, it’s really important to listen to Melissa even if you don’t understand why she might have certain reactions or responses. The reason for the way an autistic person is acting is not something that can be easily explained to people who do not experience the world like we do. So, when an autistic person is reacting or behaving differently than you would, remember that’s because you are not experiencing the same things in the same way as we are. I will talk a little more about this but just wanted to say first that there might be times when you will never understand why Melissa wants things a certain way or does things a certain way, but that doesn’t really matter because she still gets the final say in her life and in her home. Melissa did say that you wanted to learn more and thinks that you are a person who really wants to help support her in a respectful way, and she wanted to try to help you understand her better. To me, that says that she thinks highly of you to devote the energy and time into helping you to understand, so I want to help her make that happen!

Autistic people experience the world differently in many ways. The primary ways that we are different from non autistic people are in the areas of communication, sensory processing and movement.

Communication:

In general, autistic people like Melissa and I might struggle a lot with what is called expressive language. Even autistics who talk a lot tend to have a hard time with identifying and expressing emotions. This is called alexithymia. It means that some emotions are hard for us to name when we are having them and there is a disconnect between the things we are feeling and how it affects our bodies and sometimes how that looks to other people. It makes it very hard to tell other people what we are feeling when we can’t figure it out ourselves. But this is not a person being difficult or manipulative just to upset you, this is how our brains are wired. Some ways that you might see this when interacting with Melissa is when she might seem to get mad out of nowhere. Well, it’s not out of nowhere. I am often accused of doing this when in reality there are a million little things that have been upsetting or distressing me and I don’t realize and name it in real time and can’t express it to people around me. Autistic people also tend to be very blunt and communicate in facts. Some people see this as rude, but to an autistic person, not saying what you mean is pretty rude too. For example, I don’t think Melissa would ever bullshit anyone and pretend something did not bother her when it did. This is something that non-autistic people do and it’s baffling. So, as you can see, the way you communicate as a non-autistic person can be just as confusing to us as our ways of communicating are to you.

Alexithymia combined with the sensory regulation issues that all autistic people experience can be quite upsetting and overwhelming. It’s important to note that what you are seeing and experiencing when an autistic person is struggling in this way is not even a fraction of what they are feeling internally.

As Melissa’s friend of many years I know that she sometimes uses images she creates on her computer, writing or even pictures she shares on Facebook to express how she is feeling sometimes. This is something that a lot of autistic people find easier than talking. So, Melissa communicates just fine in autistic ways, but what she needs from the non-autistic people around her is to know that there will sometimes be conflicts in communication since we have such different styles and ways of expressing things than non-autistic people. The key is to respect each other’s way of communicating and interacting with each other.

Sensory Processing

Autistic people all process sensory input in vastly different ways than non-autistic people do. Some people are sensory defensive and some are sensory seeking. Some are both at the same time! I know that Melissa has a terrible time with the loud noises from the cars in her neighborhood. What might seem like an annoying sound to you is PAIN to her ears, and probably would be to mine too. Melissa can probably explain better what her particular sensory issues are, because not all autistic people are the same in that way. A lot of times, there is nothing that can be done about the sensory things that hurt us. Because a lot of that is up to other people….like the car shop people, who are clearly not interested in that kind of thing. So, that is something that Melissa has to deal with on an almost daily basis and causes her intense and overwhelming pain. Sometimes, we can make workarounds and accommodations like earplugs or headphones….but sometimes those create a whole other sensory hell for us too. I know that I can’t wear earplugs but I also can’t handle lots of noise. So, it can be a very hostile world to navigate at times.

So, it’s important to understand that our experiences are probably 100% different from anything you have ever known, but that doesn’t make them less true or valid. Sometimes, when I am overwhelmed from too much sensory input I am told that I am “rude”. I don’t mean to be, and I do not want to hurt anyone’s feelings but in that moment, I am trying to lessen the pain I am feeling. So, when Melissa is overwhelmed from sensory issues this might cause a meltdown….and if you knew how much sensory pain she experienced daily that she DID NOT react to, you’d know why meltdowns happen. It’s usually the last straw when we melt down. We are not trying to be rude or cause a scene, but we are in pain and we are trying the best that we can in a world that is really pretty shitty to autistic brains.

Imagine that I accidentally dropped a giant log on your foot and at the same time you were unable for whatever reason to tell me and I didn’t notice. Then I ignored the gestures and other ways you tried to communicate that to me. Not intentionally, but I just didn’t understand. You are dealing with this log, unable to move past it and it’s causing you so much pain that you eventually start to scream at me to get the damn log off your foot. I wasn’t TRYING to cause you pain, it was all an accident. And I wasn’t TRYING to ignore your pleas, I just didn’t realize or know any better. And when you finally screamed or had enough, I just get offended that you reacted to the pain. This is how it feels to be scolded for having a meltdown…..A meltdown is a bit like that…..it’s a reaction….it’s not an intentional act to upset another person.

And I get that it can be scary for a non-autistic person. It’s scary for us when it happens to us too!

When an autistic person melts down, the best thing you can do is to not put any more demands on the person. Don’t ask a bunch of questions or yell at us, scold us or tell us what to do. The best thing you can do is just be there, without judgment and to not hold it against us in the future. Meltdowns sometimes help us process things when we are at our limit….but they are not fun, they are embarrassing and we don’t enjoy them.

Perhaps a good idea is to sit down with Melissa when she’s not upset or having a meltdown (or if she wants help, I can help her over the internet too!) and come up with a plan for what to do when this happens. I have a plan, my autistic loved one has a plan and they are helpful a lot of the time! The autistic person needs to be in charge of what happens and what the plan entails though.

Movement

Movement involves things like stimming and how we use our bodies to navigate the world. Most people stim. Autistic people do it in ways that might look a little more obvious to the outside world. It also involves the need for a LOT more downtime than most people realize.

In addition to all that, I know that Melissa has experienced trauma and as someone who understands and gets complex post traumatic stress syndrome (CPTSD), I know how disabling trauma can be. Unfortunately, most autistic people are familiar with trauma. It’s not a part of being autistic as much as it’s a part of how people treat you for being different.

One thing you have to understand about trauma is that it causes incredible anxiety. This can be seen in things like a need for routine and schedules, wanting things to be a certain way, not liking to have to deal with changes or spontaneous shifts in our routine, the need to control our environments and things around us. The trauma of repeated sensory overwhelm makes most autistic people need to have things very rigid and controlled because we don’t want to have to experience sensory overwhelm and meltdowns all the time.

Melissa has experienced a lot of emotional trauma as well, and this also results in a lot of anxiety and the need for reassurance. This is something people can work on together….for example, I will ask the same question over and over again to make sure and it makes my non autistic loved one/friend irritated. So, we have a plan that I can ask four times and that’s it and if the answer changes after the four times for any reason, this person will tell me immediately. Then I know that the answer is the same without having to keep asking because they have not told me differently yet. I know that might sound strange to others….but it has helped to have that plan in place so much. But CPTSD will manifest in many ways and it changes a lot, so that is something that Melissa deals with as well. It’s a thing we need to work on, but it also is a thing that requires understanding from the people around us and it means that building trust in relationships is even more important for people like us.

I know this is a lot, and I have a hard time getting to the point, sorry. But Melissa is very dear to me and I love her a lot. I want her to find the kind of support that she deserves and to be happy and to feel safe and secure in her home and community. That is what we all deserve. Please feel free to ask me any questions even if it takes me a minute to get back to you because I don’t have messenger on my phone. You can also text me at any time.  and I will try to help as best as I can from far away.

Thank you to my dear friend for writing this up for me.

My Latest Medical Hell In The ER

TW/CW: Discussion of medical symptoms, bodily fluids, and ableism, violation of bodily autonomy, disrespect of my humanity.
In my lat blog post, i wrote about a recent scare i had when too much fluid was once again taken off of me at dialysis this past Tuesday. I got so afraid, because i could not eat or drink a thing, a huge painful gas bubble was in my upper abdominal cavity, and my urine was a dark brown color. I was also having slight dizzy spells.
I had my caregiver, Sam, take me to the hospital, to the ER, that evening.
This blog is about the ableism that occured, mainly from the first doctor and the two ER nurses i dealt with while there.
For one, i was greeted with a triage nurse who was not rude, but who wasn’t that friendly either. He took my history, my symptoms, and vitals, and let me know what all my vitals were, except for when he told me my temperature, he said it in metric form, and would not let me know what my temp was in Fahrenheit form. Then a registration person (female-presenting) took my info as well. They were friendly.
When Sam and i went back to the ER area, that was one hot mix of both bad and good. We waited like 35 minutes to be taken back to the ER room.
My first nurse was nice enough. Until later. (More on her in a bit!) But firstly i was put in an ER cubicle that was shared, not one of their many private ER rooms. And there was a woman in the first bed, along with a male presenting person who was standing and holding a 3 year old boy, who was running right into my area, and then crying so loud i could not hear my nurse or doctor. Okay, disclaimer, i love children, but the loud noise of the little boy’s crying was triggering me, as i was already a ball of anxiety and nerves, and i had to leave and get placed into another non-private ER room with two beds.
Okay, while i was still in the first ER room with the crying boy, a doctor, Dr. J., came right in, and upon haring my symptoms, he, without first asking me, reached over, grabbed my t-shirt, pulled it up, and began feeling my entire abdominal area. Then an unneccesary argument ensued when they wanted to put a catheter in me to check my urine, instead of the toilet hat they use for us fat folks that cannot do a conventional urine sample (pee in the cup). I refused the catheter, and they consented to the toilet hat.
I had Sam wheel me into the restroom, but we were unable to get the hospital wheelchair in to the restroom, so, the nurse proceeded, without warning, to lift up my legs, roughly, again, without first asking me, to move the wheelchair’s leg rests off to the side, so i could get out ad walk into the restroom. I reacted instantly by snapping at her to ask me first before just touching me. And let her know she was hurting my legs. I let her know i had lymphedema, and that her roughness could cause leg ulcers to break out on my calves where she was lifting them up.
She was not that friendly either. And she talked too loudly, so that everyone else in that whole area could hear what was going on. Isn’t that a violation of the new HIPPAH laws?
The following are copied and pasted from an actual survey i got in my email this morning from that hospital. Re-edited for clarity.
I dealt with a total of two ER nurses that night…St., and Ch.
Both nurses I dealt with were mostly condescending, and when i explained I am autistic and have certain ways I need for things to be, sensory issues, etc., (my accomodations for my disability of autism) they were both dismissive, and instead were quick to defend the rude nurses I had in a previous stay, over my valid complaints. I felt unheard, and talked down to.
In addition, when my first nurse, St, took me to the restroom, she handled my legs roughly, and without first asking me when helping me to get from the wheelchair to the bathroom.
ALL of ANY hospital’s staff needs to ask us first whenever they need to touch and move us. I believe in treating patients with utter respect and courtesy, and this means respecting our bodily autonomy. ALWAYS, ALWAYS, ALWAYS, ASK FIRST! And if we go to tell you things, do not dismiss us, and defend your staff over the feedback we give on them. That too, is dismissive.
I saw two doctors while there in their ER. The first one Dr. J, came right up and pulled the front of my t-shirt up without first asking me, to check (feel around) my abdominal area. This was invasive and a disrespect of me. While I realize he needed to check my abdominal area, he still needed to ask me first. Again, the entire ER staff need to learn to ask patients first, before you touch us. It shows respect and care for us as the human beings we are.
My second doctor, Dr. Sh, showed respect and was kind to me.

The lady dressed in a bright red pantsuit who came to draw blood for my labs was friendly and respectful.

The male-presenting individual who came to do an abdominal ultrasound, was also friendly and cool, and showed me respect.

However, I was only given partial information about my possible condition, and no one has since bothered to follow up with me from your hospital as to the FULL RESULTS of all blood tests, or the ultrasound I had while in your ER.
I was quite impressed with the courtesy and respect that both ultrasound person and person who came to draw my blood showed to me. They even asked me if i wanted the overhead lights kept off, to which i said yes, because bright overhead floursecent lights bother me greatly.

However, none of them would barely talk to, or acknowledge my caregiver and friend, Sam.

The reason I marked very poor for privacy is that I was put in two non-private ER rooms.

I was never visited by a hospital leader.
In addition, both of my nurses, which again, were St and Ch, never bothered to give me the TV Remote/Call Button, until I finally asked for it, and was given it only after I had asked for it, a full two hours after I came to the ER.

I was never offered water to drink, or a blanket, or asked if I wanted the room temperature lowered or raised. I was cold the entire time I was there.
In addition, when nurse Ch came in with Dr. Sh and a second Doctor, nurse Ch reached over and shut my entire TV OFF—–AGAIN, WITHOUT ASKING ME FIRST IF IT WAS OKAY IF THEY COULD HAVE THE TV MUTED so that we could talk. I would have been more than happy to mute the TV myself. It would have shown respect again, for my autonomy and me, as a human being whose feelings mattered to them.
Considering the overall manner I was treated by staff when i visited your ER on April 3, 2019, no, I would not recommend this ER to anyone.

I felt most unwelcomed there, like most of your ER staff that was on that night, just did not care.
—-
In closing, i am writing this, because my local hospital needs to train their staff to do all they can to make each and every visitor feel welcome in that hospital campus. The entire medical field needs to change and realize we who come seek medical help, are human, our bodies our ours, and they need to listen, hear us, and be patient and kind to us. Don’t manhandle our mobility equipment, don’t talk loudly so the whole facility can hear, and give us the choice of whether we are okay with being in a non-private ER room or not. I will wait for the private ER room, because our local hospital has a majority of their ER rooms as private.
It was strongly recommended that i be admitted that evening. But i refused, because of how i was being treated in their ER that evening.
P. S.~~~As for my condition, i recovered the next day. I could once again eat and drink, and my urine has been clear since then too. So it was dialysis related, them taking too much fluid off of me, that caused me to get sick.

Being Alone At Christmas-My Story In Posts

I am so not okay. A deep Christmas depression has set in, bc i am all alone today.
—-
I hate it that i am all alone.
—-
I hate it that none of my siblings even bother to send a measley Christmas card to me, let alone call me.
—-
I can;t take the loneliness much longer…..
—-
#BeingAloneAtChristmas
—-
My sister and her family, one of the two with whom i am estranged from, moved to Idaho in March 1991.
My mom and dad moved to Idaho in April of 1996.
My other ex-nice sister moved in with my parents with her daughter, one month later.
My baby brother and his family moved to Idaho in 1996 as well.
My nice sister moved to Arizona in 2001.
My eldest brother moved to Idaho in 2004.
His daughter, my niece, moved in with them a few years later.
I have one brother left here in Santa Maria. His two grown boys live in Fresno and Bakersfield.
None of them except my mom and sister in Arizona, acknowledged me this year, and they never do.
my other ex nice sister used to email and talk to me all of the time too.
But now, even she has turned her back on me, bc she says her health is now so bad, my meltdowns would kill her.
I so wish with all my heart, another nice family would adopt me.
I cannot stand the loneliness i feel today on this Christmas Eve.
—-
If you are reading this and you know of someone in your neighborhood who is a shut in and who will most likely be alone at Christmas, please go visit them, bring them dinner cookies, or just you so that they will have an actual person to talk to.
—-
To all of you in my family who are afraid to interact with me because i may just have one of my meltdowns,  please know, for one, my meltdowns don’t just come out of the blue. There is always a reason for my meltdowns.
—-
But none of you seem to even want to get to know your sibling/aunt. To find out that you don’t have to be afraid of me. That my #Autism is not so scary. To find out my being Autistic is not a bad thing. To find out that i am not wrong, a burden or damaged goods. I am just #Disabled.
—-
That is why i told my story online. So all of my family would read, understand, and their hearts would soften. I also told my story so that others would understand that we Autistics have real stories to tell. That we are not the “behavior” problem you may think we are.
—-
I invite you to Google Neurodiversity and #ActuallyAutistic. Google a blog called Autistic Hoya. You will get to know why i was the way i was as a child and teenager growing up in the Fields family. Maybe you’ll discover the sister/aunt you felt you never had in the process.
—-
I want to add this to my blog….
—-
I don’t always know the right words to say to a friend who is hurting, but by God, if i ever say anything that makes any of you feel invalidated, or like i am silencing you or being dismissive of you, PLEASE call me on it!
—-
I know the holiday season can be, and is rough, even unbearably rough for many people, and it is for myself. I just want to let you all know, i hold you in my space. I witness your pain, and your hurt, especially if you are all alone, and maybe your family has shut you out. I witness you, and i validate that pain and hurt—-it’s not you, believe me, because you matter to those of us who are your true friends—-it is on those who made you hurt, those who made you feel excluded, dismissed, silenced and unheard.
—-
I love you, my friends. I really do, and if you are hurting tonight, i am offering you hugs.   
—-
Merry Christmas, Happy Hanukkah, Happy Kwanzaa, Happy Holidays!   

I’m Still Not Okay–It’s Not Okay To Shut Doors On An Autistic Adult Who Needs Your Help

I’m still not okay.

Ppl don’t realize that when your job is to help others, to protect and serve, and you deliberately shut the door on someone seeking help bc their head is literally being blown apart by bass so sonically loud it may as well be inside of my house on max volume, that you may of just re-traumatized that person when they already have trust and confidence issues with police. Because of the way i’ve already been treated by so many police officers.

I want to move far away from this town, its police, its redneck politics!!!

A New Appeal-June 2017

Myself in our yard-summer 1975

My current situation is a Catch 22 wherever i turn. Not enough money. Not enough money. Never enough money. So, i am stuck here, in a place i hate, a place that is a prison, and a torture chamber, and an endless daily nightmare i wake up to every single day.
+++
I am a 57 year old Autistic adult, who is no longer in good physical health. I now suffer from very limited mobility, and it now very hard for me to walk, get in and out of cars, i can no longer drive, and can no longer take care of myself, so i have a caregiver, which is pad for by Medicaid. I am now housebound, and only get out because i have a caregiver who drives a car that i can get in and out of okay. I have never been able to work either, so i have spent my entire adult life since high school, surviving on very meager government benefits to get by all of this time.
+++
I need my Medicaid, mainly for the in home care i rely upon just to be able to keep all of my basic needs met. Without Medicaid, i would go hungry, and be without a way to keep myself clean, and my house clean, and i would be without heat, hot water, and electricity too. I would be all alone, lonely, and stranded. I would be forced to go live out the rest of my life in a nursing home, because i have no family support.
+++
My mom helps me by paying for my TV service, internet and phone, plus vitamins—-but when my mom passes away, then i am completely on my own, and will lose those things—-things that keep me connected to the outside world. Things that keep me a little bit healthy. Things that allow me to maintain friendships within the Autistic/Disability community on Facebook and Twitter.
+++
I have no family support from anyone else in my large family, besides my mom and one other sister who lives way out in the boonies of hot dry Arizona. I won’t move to Arizona, because the heat will kill me, literally, because of my physical health condition.
+++
Here are some things that the sister who lives with my mom has actually been telling me, posting these, because this illustrates the lack of support i have family-wise, plus their cruelty towards me—-also why i am not free to just go to Idaho and move in with my mom—-this sister lives with my mom—-Trigger warning for ableism—-
+++
“Gem” one—-My sister—–“I understand and respect your autism. But, and not being mean, and maybe cuz I’m feeling my age now, I hope that when you say you’re getting on a bus and leaving that state that it isn’t here that you’re coming. Not that I don’t care, cuz I do. I would probably have a stroke now though–my health is now as brittle as a fall leaf on a limb and the first strong wind (your meltdowns) will blow me to smitherings (lol) (not really funny though cuz it’s unfortunately the truth). (I couldn’t handle your music either 😉 (really). I agree, though, you do need to be moved, to a quiet place/street, and Mom needs to sell (those houses)………..just don’t know where though. 🙂 🙂 :)”
+++
Then this long “gem” she wrote me, and sent me links to agencies that she knew i had tried time and again, that she and i both knew would not help me this time either….Trigger warning for ableistic bad mental health slurs, and for calling Autism a mental disorder…… :
+++
My sister again—-
“ I’m not fed up with you, I’m just 61 going on 70 real fast and feeling it healthwise. But the night time calls aren’t really that good for Mom’s health-sleep-need either. So I spent some time yesterday afternoon and this a.m. researching places where you might find someone to call dispatch for you during the night and the following three were the best I found, but I’ll keep looking if you want–just let me know:
+++
California Nami for one has all kinds of advocates
+++
The next idea is so “HOT/COOL” and the Santa Maria Police Dept. is really supportive of the Neighborhood Watch Programs and I’ll bet they’d love having one on (your street).–can’t you just picture the Neighborhood Watch signs on your street? 😉 I love it!!!!! I really love this idea!!! Your new neighbor, E, might really appreciate having this program on the street too 🙂
+++
Neighborhood Watch
+++
Now don’t get upset by the next idea, as I’m not referring to you as a psycho but they offer a 24-hour crisis phone number and isn’t your Social Security disability based on your autism which was categorized as a kind of mental handicap? Anyway check out the following too:”
+++
(She sent me a link for a local Telecare mental health daycare program that i used to try to get help from when i still wasn’t sure where i fit diagnosis wise)
+++
Gem #3 that she wrote:
+++
My sister—–
+++
“ The only reason our phone is on during the night is in case someone in our family, including you, has to go to the hospital.
+++
Please find someone else to call dispatch for you, like one of your Facebook friends.
Otherwise, we’ll have no other choice but to turn off our phone at night, or I’ll be the one going to the hospital 😉
+++
Then this, also from that sister——this too is full of ableism, so yes, trigger warnings—–
+++
“I thought we pulled **** St. off the market so you and Mom could re-think your options because things were happening too fast and you guys weren’t prepared? Renting *** is dumb because right now it’s “show-for-sell-perfect” and Mom definitely won’t have the money to fix it up again if the renter’s wreck it.
+++
Also, we need to consider Mom’s “huge” credit card debt. If Mom dies, her creditors are going to immediately look into what she owns that they can attach their claws/liens to. This year we took care of this home, but your residence is still something her creditors can possibly attach and force a sale on.
+++
You guys really need to sell *** St. and you need to move into something that’s secure “for you,” that is either your’s or where the money off the sale of *** St. has been set up for you so you’ll be okay for several years. The money won’t cause you to lose your Social Security or Medicare. You can win the lottery and still keep your Social Security and Medicare. Duh 😉 You’ll only lose your MediCal. Big whoop! No big deal.”
+++
(Ummm—-no big deal???? I’ll lose my in home care if i don’t have my Medicaid, FFS!!)
+++
She went onto say—”Another idea: In 11 months, on your next birthday, you’ll be eligible to live, “in your own home,” in one of the wonderful 55+ communities (and many are not that expensive).
+++
Mom & I have even been considering such communities. In those communities you won’t have to worry about children, wild teenagers, dumb hot-rodding 20 to 40 year olds, or wild noisy neighbors or parties. Those communities are regulated by associations to keep things “nice” and peaceful. The sale off of *** St. could buy you a place in one of those communities plus leave lots of money left over.”
+++
Then she proceeded to send me a link to a mobile home park that is located in a VERY unsafe section of Santa Maria.
+++
This house itself that i live in and the cottage next to it—my mom owns both places—-is a money pit that still:
*needs full re-plumbs,
*my bathroom needs to have the floor ripped up, and a whole new sub-floor put in, then new tile, and a new toilet,
*I am sure much of the electrical wiring is not up to code
*I badly need a shower that is truly accessible—my current tub shower is not, even though i do have a transfer bench—it is still hard for me to get in and out of my shower *It is on a raised foundation, so there are three steps to both my front and back entrance that are now hard for me to navigate
*Both houses also badly need to be painted both inside and out—– —–so, if my mom were to sell this duplex as-is, she will not be able to get alot of money from the sale, because it is a fixer upper.
+++
I have no views here, just a small patch of lawn, small patch of blue sky, then asphalt, concrete, and then rows of ugly tin buildings to look at. I rarely get to hear any birds singing. I see no pretty flowers either.
+++
I need a way to get out of here to a place where i know i will be happy and where i will have more local friends, and supports than i have here. I won’t be able to do this unless i can at least get a way to get these houses fixed up and repaired, so that my mother can sell them for a good enough price.
+++
Being an Autistic middle aged adult, i am in hell on all levels because of where i live.
+++
I badly need to get away from here because of the constant sensory hell i am in due to the daily constant, all day long up and down, down and up loud traffic—-people hot rod and race through here constantly, which IS screamingly and roaringly loud, and top of that, they like to amp up their car stereos to where the bass is atrociously thunderous.
+++
I have no real way to truly buffer this noise—–and it has worn me down physically. In addition, i have had a long string of bullies in both the businesses and residents, who have seen my meltdowns, and instead of having compassion, they add to it, by doing just what they know will trigger me, so they can hear my screams and cries of sheer agony.
+++
I would be grateful and content to live here if it was not for the loud noise, the bullies who are still here, and the fact that these places need so much fixing up.
++
I don’t know where or how to fix this never-ending pit of hell that i seem trapped in. I wish someone would read this who would have the means to help me to finally be able to not just get away from here, but to finally be able to have a dream i have had since i was a child, of living in the New England area—preferably near some of my Facebook friends.

Trapped

Hydrangeas-1

CW: This is not a fat shaming post. This is a Melissa health post, because i am perishing.

I slept all day today, and had nothing but nice travel dreams where i was traveling, by airplane, to the East Coast, and in the latest dream before waking up at 4 PM, i was traveling to Bloomington Indiana, a place i did once visit back in July 1983.

I so wish i still weighed at least 175 lbs again, with no leg problems, and could get another car and drive again—-and even fly places to go see my FB friends. I don’t need to be reed thin, just at least back down to between 175-200 pounds. That would get me back to a better place physically- functionality wise, to where i could do all of those things again. I know it would help the lymphedema in my legs too.

I want to repeat again: I am not fat shaming by saying what i am saying. My body is shutting down. I am shutting down. I can no longer function like i need and want to because i weight about 350 lbs now, and i have bad back, knee, and hip problems, as well as the lymphedema on both legs—-AND the huge lymphedema ROCK on the inside of my left thigh.

The lymhedema was caused by me not being able to sleep laying down anymore, but sleeping for 8 years, from 2004 to 2012, on a badly broken down living room sofa that bore into my left leg and thigh, especially. I would sleep sitting up, with my feet on the floor, which is bad for leg circulation.

In addition, i have always been, and sill am addicted to junk food to help keep me calm because of this hellish street i live on, stuck day in and day out, inside this house, because i never feel well enough to get in the shower so i can get out and about and get my hair colored anymore.

Having so few people actually care about me in real life—-(i do have my mom, one nice sister, Connie, and my Facebook friends, but no in real life local friends or family support other than my mom and one nice sister)—-has worn me, and my body completely down.

In addition—i have to endure day in and out, unbearable loud hot rodding and thunder bass noise right in front of my house on a street where the speed limit is 25 MPH.

I never get to go anywhere anymore because of my physical circumstances. It is even now hard for me to keep doctor’s appointments. It is getting harder and harder for me to even want to get out of my soft comfortable life chair anymore.

I am depressed all the time now, and don’t have the will to live anymore, so i am praying daily that either God lets me win the lottery so i can escape this toxic neighborhood, or for God to please take me—-because i cannot bear the way things are any longer.

I am an Autistic adult and i feel trapped with no way out of these circumstances.