u/Ok-Shape2158

I got tested for EBV 5 years ago and I just found the results again. I have two results that are almost off the charts.

primary at the time refused to tell me anything and no one else would because of insurance. I couldn't afford to go out of network. I've been unemployed on medicate not even disability, and inflamed since.

If there's anyone that that can get me out of this please let me know what to do next. I keep telling new primary doctors about the test but they just blow me off but I finally have the test.

I'm a sucker for all of this, but you can't say no to these toofers. You can, but then why exist?

If people can have a lack of empathy towards others > antisocial personality disorder.

Why is it that in most every second of my life, struggle to have empathy towards > myself?

This feels real and it feels valid. I can only truly fight it when the whole world and the people closest to me in a loving chill and magical way show me that I can put myself first. And that is the last thing the people I love or this world does. I mean we are human and it makes me feel like trash just thinking it.

Most of my life but my body is destroyed because there was too little support for me to build boundaries. Close your eyes take a deep breath and push against every single one of the ten million boundaries you feel right now. See now I could. Thank you.

• Typical therapy never worked.
• I am a mimic to my soul.
• I am not a people pleaser.
• I am not depressed.
• I am not fawning.
• I only follow poor scripts because I don't have better ones.
• I don't have anxiety I just know when something bad is going to happen and I'm to slow to stop it.
• I struggle between the different parts of me and my apathy has me living in a space that has barely changed in seven years. When I do make a change if anyone sees it they are blown away but because it's mine and I'm like meh.

I have to image someone else deserving the right to eat, joy and live and it gets me going ( my ADHD side is a different post). I think this list could wrap around the world if I kept at it and I'm sick of people tell me otherwise. .... am I alone in this are there other ways to work with this kind of brain , we deserve it.

I'm so serious.

​

I have the pill cutting scissors and they work great, but I don't. Fingers and grip.

​

The pharmacy said they could cut my pills but I have to go to the pharmacy with the the cutter and the pills. I can, but I just want to check with all of you first.

​

Is there a pill cutter, that cuts one pill, into quarters, in one chop?

​

Y'all know everything and I appreciate it.

and it makes me feel bad, like all the time, and I see it on here too, and it happened to me again just last night.

​

But - I had a moment of clarity and wanted to share it and see if anyone else could see it.

​

I'm trying to survive burnout. I have multiple chronic diseases and migraines, but nearly every day in the morning and evening I amble around my neighborhood. Big words for me yeah!

​

A neighbor got me. They all know my story. I'm not ashamed. I know they are all ND in their own way I am and on meds but also doing a bunch of drinking and non prescribed drugs too.

​

This person did a lot of things to make me feel uncomfortable all while they know that I don't feel good and I told them politely twice that I need to leave.

So when they made a hand movement that looked intimate and graphic, I commented on it not mean but in that observational way we can and it freaked them out because I'm so very nearly ACE, but it made them stop spiralling into me.

​

For the first time in my life I understood why I did it and that it was an actual win.

I didn't like that I did it but I didn't apologize.

I did follow it to modify it inclusively, lol, it made it even more weird but that just made me laugh at myself in a good way.

​

What I think I'm saying is maybe our social awkwardness isn't our failings but our responses to to others not listing to us. I keep seeing versions of this theme popping up on social media lately and it feels like a true script.

​

I will get to the point where I can just walk away from people who won't listen to me, but I have been taught that is never an acceptable option unless they are physically attacking you.

​

I need a new script. It's today. Ok. It's today. Thank you for being here to see it. wow

Hello. So I'm just going to say I'm AuDHD and the abc soup of everything else so I'm slow and messy. I work for a minute then I don't.

​

I decided to try a brace between my knees and applying pressure to pull my knees together with a large scarf. Wow.

​

It's but of the feeling of being a kid in the old heavy rubber swings. I loved those.

​

Which made me come on here to ask is there anything else I can do this too. I think a thicker brace between my ankles smaller band around the outside. Maybe my try my hips too?

​

I've been wanting to use a gentle band on my ribs to strengthen them but also just for preception.

​

How long do you brace for 5 minutes?

​

I know I get micro dislocations so I have to be super gentle and only before I go in to see my provider.

​

If there's a link that I just don't know about, I would appreciate it so much. Thank you.

Seriously.

​

They aren't a bad person, but they've grown and changed, and now I'm miserable trying to keep up and I have to get out.

​

I hate hurting people. I tried to end it but they cried and I caved. Yeah. I know. You know.

​

I've just been making myself sick and I'm just realizing it. I want it to end. I need it to end. It's so frustrating.

​

They can't be happy either.

​

We've been together for a long time, we don't live together.

​

Do I just not have a freaking script that works?

If you hate it then this post isn't for you, and that ok too.

I don't have it yet, but it looks like it is less than it's less than 10 US bucks.

It looks like someone had a party the night before in an old fashion manor style library.

And there are even spells in some of the books to help you organize.

I hate cleaning but I have the organization and line up drive. I even do it in my other video games so to have a game that is based on this. I feel like my people have stepped up to the challenge.

Has anyone played it and liked it?

Why I might like it...

No dust for my MCAS.

No dizzy for my cellular vascular disease.

I can lift heavy books over and over dear hEDS and twist my body all around and run up and around.

Oh, and nothing to trigger my migraines.

I never thought I'd be excited about a fake library before, I know this is expensive for a lot of people, honestly it's not a cheap or thoughtless purchase for me. I'll probably spend ten more hours debating if I should do it or not even if I could replay the game and five hundred hours of distraction or motivation out of it.

Just thought I would share because when I watched a short clip of some play it sparked the immediate need to join in and hunt retrieve and shelve, that doesn't happen very often. It was cool. ^⁠__⁠_⁠^

FYI

I have been on the edge of complete collapse for 5 years.

I live alone. No one explains anything.

So everything is different everywhere, but I have the absolute worst Medicaid on purpose so that it also contains behavioral health that I don't need, so chances are that if you are in the US you have this.

------

I have space for extra scripts so I'll add some, so here:

Get your insurance card out flip it over and call the member number.

Give them all your information

Then them ask them to email you a Personal Care Service Assesmet Form. If they say they do have one describe this and say I want a form for this purpose.

It is for when a beneficiary (you**)** can no longer function on their own and needs in an home assessment and support Their PCP needs to fill out documentation.

(If you are married your spouse asks for a Respite Care form. I'm not sure about this process but there is one.)

-----

Once you have your medical appointment you just have to try to unmask, it's hard as hell and your Dr or PA probably won't believe you because consider it confession time, you will have to get food at it if you want to heal and someone to come in your home.

If they do it email them the form and the instructions.

If they won't, ask them this:

Ok how many times will I have to come and see you and we talk until you believe that I'm suffering?

Or

Is there another provider in this group that is willing to support an adult patient I would like to work with them? ( It used to be hard, but now I don't play anymore, my card has been punched too many times.)

That's as far as I've gotten and I'm waiting, because that's what you do. I'm sure they will change the process and the name, but if a couple hundred or thousand of us get help please tell people and make changes and spread the word. I just didn't know how and that's flat out evil.

Remember we are taught to mask, hide and lie all the things we are failing at. They think it benefits them. It isn't working for you. I'm not saying give up once you start this process, but start thinking about what you could hand over. / yeah

Edit: I would put this in /rautusim but I'm tired the bad attitude over there.

We need 16 more gremlin tags.

For context I live on a stipend and I struggle with water, but I love it. You know us.

A few months ago I almost lost the ceiling(see below) because I didn't want to get into the shower and I let it run and walked away.

-------

I've wanted a water softener for decades. The ex didn't. Now my place is too small. Then I found out about compact softeners, thank you community. They are expensive but I can rent one and it will fit. They can even tap an existing line.

I won't smell the treatment plant that's up the road.

It will make my dishes easier to wash.

It will make my clothes softer.

It won't hurt my skin.

---------

My family is mad at me.

------

For reference they want a Toto for their nether regions, which cost about the same amount and I fully support.

------

So I did it. We deserve to support our nervous system and bodies and I'm hoping that I can find some programs that help me recoup the cost.

I don't know if this is processing, or a rant, love one person to tell me I'm not stupid. I feel crazy and way too privileged, but I'm giving up a hell of a lot for this and I've gone over it a thousand times.

FYI the cost of a new bathroom, downstairs ceiling, ductwork, studs and half a new the kitchen is way more expensive but what do I know. I'm just blessed it did happen the first time...

I just wanted to thank all the EDS aunties on here that relentlessly harp on every single person to advocate for themselves.

You are collectively, singlehandedly changing the way specialists in the US deal with the lowest level of health insurance holders, please don't stop.

It shouldn't matter, but for decades I was a top tier athlete and had the absolute best health insurance and they still ignored me.

So, your relentless advocacy when I lost it all and nothing was working, and I just happened to know I had hEDS and you all just happened to be right about advocacy.

Now, because of all of you. I'm getting answers about everything. I'm turning their bad and lazy attitudes against them.

I have all of you with me on all the phone calls, and I ask for a RN, or someone to stay in the room with me when I talk to these apathetic gods.

I can't always get one, but when I explain it's because I'm overwhelmed and I just need a human geiger counter in the corner and keep me grounded. Ooh the send in the best ones and things get done.

My doctors can respect/hate me all they want, but I feel like it's because I beat them at their game, it's so sad, thank you. One diagnosis week, lol.

When I can I spread this mantra. People often feel overwhelmed and I understand. I tell them, at a time when you have nothing and everything hurts, having one goal and a focus, get one referral and make one specialist understand what your are feeling in you body can take decades. Ok. Now go do that.

A female friend said something and it sounded like roads or ryods?

For the love of all she said in the context of her doctor tell her about it. She is a woman of color. It may be meaningful in this context.

And now I can't figure out what she said and I can't even spell it well enough to get it to the right thing.

Can anyone help me? Today I just can't do this on my own. / so sad

Usually someone out there is sitting on way too much information.

But no one wants to hear it, sorry.

Ok lar it in me.

When I get tired my dang eyes freaking roll around in my dang head.

Like in actual opposite different directions, and my focus is non senses. No one would believe me.

I'm 51 and I can see better close up most of the time thsm far away.

That doesn't make any NT sense at all.

My PCP says I have EDS in my eyes because I can't see very far to the left or right and hold it. I'm practing a bit ebert day and seeing improvement.

It also effects you nervous system. Anyone dgot done data? / searching.