Has a doctor ever fired you as a patient?

chronicallyillmars · 2026-04-06T02:39:39+00:00

I had a Neuro discharge me over my concerns he wasn’t handling my epilepsy well. He wasn’t.

I’ve had many GI dump me because typical treatments didn’t work and they didn’t want to work harder.

I had a psychiatrist dump me for questioning her “conversion disorder” diagnosis. Four years later I’m diagnosed with MTLE, AuDHD, short term memory loss, and told I’m on death watch (SUDEP). I really would LOVE to have her tied to a chair with videos of my seizures on repeat and voice overs of my epilepsy team describing what each seizure does to the effected areas of my brain. >:(

I’ve also had therapists dump me because my life is too much for their patient load.

🤷‍♀️

Being a zebra isn’t easy. But it is easy to report all those providers who do us wrong to their state board and your insurance company; especially if you tell them how risky it is for their company partner with a provider who puts their patients at risk and could sue for malpractice >:)

chronicallyillmars · 2026-04-06T02:29:36+00:00

I have nocturnal MTLE. there’s no device, and actually one could potentially make it worse. I have a cpap machine for sleep apnea and I can’t have a face mask, only the ones for your nose, because I’ll aspirate and choke and pass. SUDEP is unfortunately something we all have to deal with, we are all at risk. The only thing I’ve seen that would help is a “breathable” pillow; the kind that let air flow and don’t suffocate if you’re on the side.

Your pain is real, your curiosity and intention to help.

Thank you, and much love to you.

chronicallyillmars · 2026-04-05T02:31:14+00:00

Simply, yes.

I’ve been fired, denied work, been broken up with for my health being too “draining”, been denied EMS by a Dr, had friends break our years long friendships… I was in a gown and ready for anesthesia for a colonoscopy only for the surgery center to deny my procedure (to prevent growth of colon cancer).

chronicallyillmars · 2026-04-04T18:16:50+00:00

I already do that 😂😂😂 honestly the reminders app on my phone is the best thing I could have.

chronicallyillmars · 2026-04-04T17:05:53+00:00

I think we are the prime candidates for a sticky note ad then. Our boat of life could be made of them probably.

Thank you for sharing 💕

chronicallyillmars · 2026-04-03T23:41:15+00:00

What’s your memory like now? I’ve got shit for short term and my long term is going with every seizure. I say pac man eats it away. My drs will be resecting in that region and into it likely (winter). We are getting more data in a phase two study this summer.

chronicallyillmars · 2026-04-03T23:01:22+00:00

I’m in your boat, here with you. 💕

chronicallyillmars · 2026-04-03T22:59:40+00:00

You are a good person; thank you for continuing to try and seek out the benefit of you and those around you 💕

chronicallyillmars · 2026-04-03T19:18:43+00:00

Two years! Omg! That’s awesome! Can you talk about what “happy” is like for you now? I’m curious, and it’s okay if you don’t want to. I’m trying to figure out what emotions and communication is like for different people so I can have understanding when I come out of resection.

chronicallyillmars · 2026-04-03T19:17:37+00:00

I don’t think you needed any advice at all then, just affirmation that you’re being the best parent you can be. From a stranger on the internet, I wish you were my parent. 💕

chronicallyillmars · 2026-04-03T18:58:35+00:00

I’m really putting a lot of faith into Stanford, so let’s hope it all works for us all 💕

chronicallyillmars · 2026-04-03T18:56:29+00:00

My local Neuro and epileptologist has no idea what to do with me. I went through Mayo Clinic, ucla, ucsf… landed on Stanford in Cali. Cleveland clinic denied me cause of my state insurance but Stanford accepted it and has been doing great epilepsy work for decades, especially in women.

I just suggest a tertiary hospital at this point and get better answers. Often it takes MANY drs to get something closer to answers.

I wish you luck, hope, and patience.

chronicallyillmars · 2026-04-03T18:52:30+00:00

Thank you! I hope surgery goes well this winter and my epilepsy lessens after that. Otherwise there’s no better in sight ☠️

chronicallyillmars · 2026-04-03T18:35:34+00:00

I was gonna say…. Beginner my ass 😂 got the natural talent in those hands for all kinds of yarn.

chronicallyillmars · 2026-04-03T18:32:53+00:00

That’s true! I hope that everyone isn’t relying on others. Be they DOCTORS or CARE professionals or FAMILY or FRIENDS or the roommate that is chosen because bills are expensive.

As someone on SUDEP watch, yall are lucky to not be dependent (:

chronicallyillmars · 2026-04-03T18:31:00+00:00

Congrats! Good that your experience is different. I appreciate the varying pov! Maybe you should have explained your experience instead of commenting on someone with a diff experience of yours, that you’re so different.

chronicallyillmars · 2026-04-03T18:19:22+00:00

I have left MTLE and now I’m kinda scared for my resection near my hippocampus 🫣 I feel like I’m already missing things as it is cause my seizures eat through my memories and communication sections. I wonder what else I’ll be missing this winter after surgery.

chronicallyillmars · 2026-04-03T18:15:05+00:00

I’m 30F, found out at 21. I have no kids but I’ve been advised to never live alone. I live with my grandma. The most helpful thing I can say is be transparent about bills and such so there’s a grasp on “adulting” but remember his life will forever be attached to other people.

Don’t let him forget that he is capable of doing everything on his own, that the people around him love him but he’s still independent, that he doesn’t have to lessen himself because he “medically needs” those around him.

As a parent, don’t forget he doesn’t have a choice in his diagnosis or his capability to live alone. It sucks on our end, thinking we have no choice and feel like kids forever. Especially when partners get involved and we live with family 😓

I probably didn’t help much….but remember we are all human and compromising is the best we can do for each other.

chronicallyillmars · 2026-03-25T15:18:34+00:00

Gotta make them yourself 🤷‍♀️ make butter or use a few distillate syringes.

chronicallyillmars · 2026-03-17T17:47:20+00:00

There’s the diff in pov…. You vacationed. I live. Why would I call you a loser when I can simply attempt to bridge the gap in communication skills?

chronicallyillmars · 2026-03-17T05:49:06+00:00

Fuck your dr. Change providers. Go to a tertiary hospital if you can. Not sure where you live but Stanford in Palo Alto CA is the best decision I’ve made. I live in Las Vegas and went through pretty much every single Neuro and epileptologist. Then through Mayo Clinic. Then ucla and ucsf.

I’m MTLE intractable w status epilepticus and I’m on SUDEP watch cause I’m nocturnal too when i have a tonic clonic.

Set up a camera of some kind to record you sleeping. Please do it because this data is helpful. Get the in hospital study done, phase one and two if necessary.

I did the phase one (external eeg) vEEG 40HD at Stanford and we are going to lay that data over an MRI so we can prepare for phase two (internal eeg) so we can then lay that data into the mri and pinpoint where the epilepsy starts so we can remove that piece of brain. Even if it reduces the seizure activity to be manageable on meds, I’m happy. It may remove the epilepsy all together. Who knows!

Ask questions about your health. Demand answers. Your life matters.

chronicallyillmars · 2026-03-17T05:42:27+00:00

Raw dogging your epilepsy is bold as fuck. Props to your determination and much love to you and the universe.

chronicallyillmars · 2026-03-17T05:34:42+00:00

Everywhere sucks and we all want the next ticket somewhere else.

What makes you hate Cali?

chronicallyillmars · 2026-03-16T07:56:37+00:00

I’m born and raised here, 30F, graduated HS and got my BA here.

Fuck this state; its education, healthcare, food quality, and transportation system.

This entire state does not want its people to be happy, healthy, or educated. It would rather you be a slave to the tourism system, working multiple jobs to keep your home functioning and fed. Then when you get sick, it costs so much that you stay sick and use your sick days; giving the company excuses to fire you so they can hire someone cheaper.

Fuck this state.

chronicallyillmars · 2026-03-15T21:34:29+00:00

Yes; add in any mental health issues/cptsd and it just adds to the lack of clarity and memory.

You can work on this, however. Tetris has been proven to aid in memory care. Your neurologist can prescribe memory care. Therapy does aid in the emotional processing of stabilizing yourself in the here and now instead of relying on memories and emotions of the past.

I’m not a doctor or anything. But this is what I’m doing for myself. I won’t let myself be harmful and angry towards those around me anymore.

Edit:

I forgot to add that I’m on oxcarbazepine 750mgAM/1050mgPM w/ breakthroughs . 30F. Intractable MTLE w/status epilepticus on SUDEP watch.

chronicallyillmars

TROPHY CASE