u/idkdawgi-jusworkhere

Hey, so my neurologist fired me today due to "not being up to date on trigeminal neuralgia research" she told me that pain management is supposed to treat me. My pain management referred me to her because they can't treat trigeminal neuralgia. She was only ever interested in treating my migraine until i was a medicaid member who needed botox (which i used to get and worked). She suggested neurosurgery (not a candidate) for spinal chord stimulators in my cheeks (bilateral) that a neurosurgeon had suggested if and only if i was able to determine that my pain is unilateral.

She refused to help me with at home SPG blocks or even recommending them in a letter for the ER.

Has this ever happened to anyone? What do you do?

this probably migraine is making me thing

So i had this strange aura all of a sudden at work last night, i couldnt follow conversation, I couldn't really process sights and POS at work. Thankfully it was towards the end of my shift so i left only 15 minutes early but the 1.5 hour commute was so difficult, my job involves a lot of escalators and then a 20 minute drive.

i have chronic migraine and nurtec didn't help, but the headache was not that bad considering my regular trigeminal neuralgia pain and whatnot. When i got home despite having worked indoors and gone home in the dark i had the i spent 5 minutes in the sun look across my face and chest, this morning its still there and vibrant as ever.

Postdrome is involving more nausea and sleepy than im used to as well.

I am grumpy today that all of these symptoms are compounding and just seem to trigger each other ya know?

I am waiting for more conversations with my rheum for exploring lupus in addition to my PBC. but im so tired of this waiting game. My body has already reduced me from a full time barely scraping by worker to a part time, making less per hour also brink of homelessness worker. I just wish there was more help in place for disabled people, diagnosis limbo or not. Its becoming so frustrating.

So two days ago I was changing from my house shoes, to my medicaid shoes, both have the same custom inserts and I kept my feet firmly planted on the ground as much as i could, when i took a step on my right leg, I realized i had sprained my ankle somehow. I've had a high sprain or two before, this was more painful but I kept going because I have a new on my feet job and I was leaving to get my security badge for it.

Two days later, my leg and ankle still hurt and are still vaguely swollen. (first time) can't rise up onto my toes, tender if my wife presses around it, etc. Usually my injuries like this disappear within 24 hours and don't have much swelling.

I'm probably going to call my foot and ankle dr to see if they think I need an appt somewhere, but I don't want to end up at a sports med.

At what point do you consider an injury worth a visit?

I'm upset because I want this job so I can not have to continue my SSDI application, but if I can't walk far or are in a heavy boot that causes hip injuries idk what I'm going to do. (I was hopeful the inserts and now being allowed to take NSAIDS would allow me to work lmao)

Its been bothering me for a bit, but I just tried to take a cute selfie from a straight on angle and I have jowls.

I have been diagnosed with hEDS for 4 years but has anyone else had this with hEDS? The mild facial asymmetry was hard to accept, but no wonder I'm not getting my ID checked at the liquor store.

I can't find anyone online talking about this. I feel so sad now and I did a whole look with makeup and now i feel like its accentuating them ahhh.

I think im finally going to do the scary thing and ask for a new provider because of a few things that happened at todays urgent appointment he told me to schedule for something i called to ask about between sessions.

Told me I have to work (He became my provider right as i applied for SSDI, 3rd job i had left in two years due to paranoia and schizo symptoms prompted but i also have a lot of physical health issues) and that I can't not work

Told me to just live with my catatonic symptoms if I don't want to participate in therapy even though my therapist is on leave and just saw a new one yesterday (he has access to this info and i reminded him)

Told me it seems like i want to be on medication, last appointment he took me off seroquel (faster and sooner than i asked) at my request, and maybe this is why he threatens me with clozapine every time i see him

He told me i have conversion disorder and that my catatonia symptoms are dissociation

Is it normal that when switching providers out of the hospital that you dont get an evaluation? I feel like im being accused of faking and attention seeking but i don't think i am? Am i misremembering and not actually having symptoms?

I feel like hes coordinating with my other providers to kill me and he point blank asked who i think is trying to kill me so idk how im supposed to answer that. How do you even talk to someone if they can read your mind and you cant get the words to coordinate out loud?

How do i talk to my team when im pretty sure theyre trying to kill me and sabotage my life?

Idk

Ai psychosis

Religious psychosis

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Why cant we use the terms accurately

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Ai gaslighting

Religious gaslighting

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Its really harming my ability to just exist in my social circles

Anyone else feel like their skelly mech is on autopilot when catatonic, but like very malfunctioned?

Idk my psych always calls this "disassociation or maybe catatonia" but I'm fully there and fully aware, body just broken. Idk how to convey to him my paranoid thoughts and symptoms if the mech won't even let the words leave.

Struggle to express needs or even answer questions as psychosis starts to come back?

Like ill just go silent and stare into the distance, and my wife will ask questions, and i know the answers and would like to express my needs. Instead i go "maybe" and just keep staring.

I think i need to up my meds but I don't even know if i can say that today at my appt.

A day to bring awareness and acceptance, but most importantly, a day to do something kind for yourself.

Like dont share your blog but, just want to see if im dancing with you all in other circles too lol.

My psych said i showed no objective symptoms in the psych hospital, and im getting salty again so wondering what that would mean.

I've never been one to discuss my internal world, in or out of psychosis. Getting help started with me getting insight by myself and then the poor person who first prescribed antipsychotics was struggling to get me to even talk.

Is this why they're questioning my diagnosis? Why my catatonic behavior was just labeled ptsd or conversion disorder instead? Even if my catatonia didn't start until the delusions started again, and went away as i got off ativan and onto another antipsychotic.

Like i know i have Schizophrenia, but I'm just trying to understand the reasoning because they treat me like i cant understand what theyre telling me instead of involving me in my care. My psych seems to think im on antipsychotics just to validate myself and not to control thinking theres a network of coworkers/clients stalking me. Is there a reason psychotics are so devalued that psychs legit believe that the delusions are actually just believing we have delusions?

I still qualify for the disabled part, but I'm between jobs so am not a working disabled adult and my spouse makes too much for income based medicaid. I am no longer employed due to health that needs to get under control. I got notified today that i am no longer covered. I have 2 procedures and an MRI for the rest of this month, is there anything I can do? I can't work if i cant be healthier, i dont get it.

Hey gang, i have hEDS and i had a p severe hiatal hernia as of my first two EGDs over the last 4 years, today i had a 3rd and my hiatal hernia was no longer there.

Has anyone else experienced this? Does it come and go over time? I'm so confused omg.

I also learned that polyps can appear in the stomach so that's my interesting fact i learned today. :)

My gastro has sort of diagnosed me, but my liver numbers came back better, but still high and my scan came back at f2.

I agreed to get an rx but my insurance wont cover it without a diagnosis and in my chart i dont see it so im nervous. I cant afford $55 a month for this.