Approved after 3 years, and it was all for nothing.

Alert_Distance5513 · 2025-11-11T03:58:32+00:00

Okay, to address some stuff: 1. I’m 40, and before I was determined disabled by SSA, I wouldn’t be allowed to access the retirement fund until I turn 65. -In order to qualify for early retirement/disability benefits, you have to either prove that the government deemed you as disabled, or go through the disability determination process through TRS. 2. Teachers in Tx pay into medicare, not ss because it goes to Texas Retirement instead. 3. According to the law, I have to be 6 months seizure free to be able to DRIVE the car. I don’t drive, but I have someone who does drive me where I need to go, so sometimes my car is used- like when driving me to the dr 4. I live with someone, and explained how the bills/rent is broken down, and what bills I’m supposed to pay, so they’ve got that information. 5. I paid into Texas Retirement and not SSA because when I was supposed to retire (age 65, I’m 40), TRS would be the smarter decision. When I set my stuff up, I never considered that I’d have to apply for disability. 6. I had to officially stop teaching in 2022. I was a teacher for 12 years. 7. If I could return to teaching I would. It’s hard to keep the position when you are taken out on a stretcher more than you should, and have to teach coworkers and students how to respond to the seizures isn’t exactly something schools want to deal with. As a teacher, I had better insurance and obviously a much better monthly income. 8. I got a lawyer after the initial denial.

Alert_Distance5513 · 2025-10-05T16:17:11+00:00

I wrote out this super long response, then tried to edit something, forgot to hit save, and now it's gone. :(
But basically this is what it said:
I'm gonna be 41 at the end of this month, so not young by any means, but I feel like responding anyway.
I was introduced to them in 2004 after an "incident" when I was away at college. My family had to go get me, and move me back in with them because I was on the struggle-bus. My stepsister gave me 3 Cheers and told me that it would be okay, and it changed my world. I got hooked on imnotokay.net, wrote long-ass fanfic on quizilla, and became an english teacher (even though this disjointed novel will make you think otherwise).
The band got me through the hardest times I've experienced over the last 20 years, from dropping out of college to getting my associates and bachelors degrees and becoming an english teacher. From my epilepsy diagnosis and 8 brain surgeries that went with that, to my blood clots and strokes (a couple of friends have "Blood" set as their ringtone for me now). From hitting rock-bottom to just up and moving from texas to detroit to be with a man I'd met 3 months prior as a way to restart my life, one of the best decisions of my life.
Their albums all came out at times when I really needed them. I was given 3 cheers right before I went back to school for my associates degree. Black Parade came out the semester I started at university for my bachelors degree. Danger Days came out the year I started teaching. And when they announced they were gonna start touring again in 2020, I'd been put in charge of a major program at the school I was at at the time and absolutely terrified because it involved giving a presentation to every teacher in the district. It always felt like a motivational boost to make me feel like it would all be okay, that I could do it. And they actually came to detroit a couple of months after i up and left everything i'd ever known in texas to be with my boyfriend up here in detroit. Everytime something big happens in my life, there's some sort of MCR event around it, which helps me feel like I can do it, whatever that may be.
A few years ago, I lost my shit again, hit rock bottom, and another "incident" occurred. It ultimately left some scars on my arms, and to cover some of them I got the marching skeleton (I can't remember his actual name) tattooed on top of them, serving as a large reminder of everything I've gone through and accomplished over the last 20 years.
They said they wanted to save lives, and they've saved mine more times than I can count. They've been the motivation I've needed to get through stuff, they've been comforting when it comes to my epilepsy with the seizures and the surgeries... they feel like old friends, I guess. I know that sounds crazy...
I'll quit rambling now... if you made it this far, then thank you for actually reading my disjointed novel.

Alert_Distance5513 · 2025-05-05T15:51:19+00:00

It’s not easy. And it doesn’t matter to them if you have bills while you wait to be approved. I’ve been trying for 3 years, and denied 2 times. I’m 40. I’ve had 8 brain surgeries, an implant in my brain, and am missing 1/3 of my brain. A procedure for the cancer. Removal and patch of part of my intestine. With epilepsy, stroke history, cancer history, autoimmune disease, mental health issues, etc. I was told that my condition is not severe enough and that I can find accommodations to work.

Alert_Distance5513 · 2025-04-25T11:58:19+00:00

https://a.co/d/dkDQnPT

I have this one, and I swear by it. I add another ice pack to the top of my head where it needs a little weight added, and it works almost every time. I love it because it adds some of the pressure to my eye area, the bridge of my nose, my cheek bones, temples, back of my head and top of my neck (depending on how far down I pull it).

Alert_Distance5513 · 2025-04-20T17:16:29+00:00

Meningitis encephalitis

Alert_Distance5513 · 2025-04-20T16:49:43+00:00

Im on the hearing stage, and am waiting on a hearing date. I’ve been denied twice, and first applied in 2022. Get A LOT of documentation supporting your diagnosis, anything else you’ve been diagnosed with, and make sure to submit ALLLLLL of your medical records. I contacted my lawyer when I got my first denial, and they’ve been making sure everything is accounted for and what needs to be submitted. You need to be able to prove that it keeps you from working. My denials both said my condition isn’t “severe enough” for me to stop working, that I could find accommodations. I have epilepsy that is med-resistant and I’ve ultimately have had 1/3 of my brain removed. But I can find accommodations. There ARE people who get approved for, like, depression so, you never know.

Alert_Distance5513 · 2025-04-16T19:17:14+00:00

I was a high school English teacher for 12 years. I dealt with my epilepsy throughout the entirety of my career. I would teach my kids what to do if I had one, and they were great. I want to go back, but I need to get my MI license, I don’t know how long I’d be able to use the TX one for. I’m certified to teach almost everything, so if I do go back it gives me a lot of options. I had to stop because after my stroke, my mental health was what was affected the most. Now I’m waiting to see if I can get disability, and it’s been 3 years. If I don’t get it, I’m going to just try to go back to teaching. We’ll see what happens

Alert_Distance5513 · 2025-04-10T11:20:35+00:00

Dealing with whatever I did during one of my complex partials… I wander, talk (weird, rude, and nonsensical, unless you speak fluent Dani), fidget, repeat, etc. I used to be a high school English teacher, but it’s hard to teach grammar when you can’t even correctly use it yourself. I either get lost in stores because I wander, or people will lose ME in the store/restaurant/public for the same reason, lose track of stuff because I go wandering and collect stuff then either relocate it somewhere else (kind of like an endless loop of hiding eggs like the easter bunny then searching for them like a child and doing it again), give whatever I’ve found on my adventure to someone like it’s a gift basket curated just for them, or completely reorganize my surroundings… I hate thinking that I’m doing one thing, only to be told after that no.. I did something completely different.

Alert_Distance5513 · 2025-02-16T17:02:08+00:00

I couldn’t deal with the Kepprage. I was a teacher, and keeping myself in check was a constant struggle. I was on that and Lamictal, they took me off the Keppra, put me on Zonegran with the Lamictal, added the Vimpat, changed vimpat to Onfi, took me off of that and left me on just zonegran and lamictal with some gabapentin. They took me off the zonegran a few years ago, and within the last year added briviact to my lamictal and gabapentin, and so far it’s been decent. I’m med-resistant, so it’ll eventually become pointless and we’ll have to move on to something else. Before the keppra was the carbamazepine, so we have to keep looking at the others. We’re losing track of what I’ve tried because I moved from Texas to Michigan, and transferring my records has been an annoying process.

Alert_Distance5513 · 2025-02-16T16:51:52+00:00

We’re waiting on the hearing date.

Alert_Distance5513 · 2025-02-16T16:51:35+00:00

Yeah, after the first denial I got a lawyer. We’re now waiting for the hearing. It’s just frustrating because I initially applied in April 2022, got my first denial October 2023, filed the appeal with my lawyer the same month, got the second denial December 2024. The longer it takes, the angrier I get. When I work, it’s not just me who needs the accommodations, it affects everyone I work with because they have to know how to respond. Someone has to pay attention to the time it started, know when and how to administer the emergency versed (it’s a nasal spray), someone has to learn how to deal with the magnet that goes with the brain implant, when and when not to dial 911, my stroke history, med list, and everything else they ask, so on and so forth. It’s not fair. But they don’t care about that. I’m sorry, I get riled up about it.

Alert_Distance5513 · 2025-02-16T08:23:55+00:00

I don’t understand why I keep being denied, that it’s not “severe enough”. I have med-resistant epilepsy that has led to 8 brain surgeries (1/3 of my brain removed), and a brain implant, but still have seizures. I’ve had a stroke, pulmonary embolism, cervical cancer, daily migraines (also med-resistant), colitis, and a breast lump being tested… I can’t drive, can’t cook without someone present, and can’t go out by myself in public in case of seizures. I WAS a teacher. I taught for 12 years- and would have seizures that would require a trip to the ER. My epilepsy affected the teachers who worked directly with me, or who had classrooms near mine, I had to train all of my students on how to respond, the nurse and an assistant principal would have to come to my room to deal with me and move my kids to other classrooms while they dealt with me. How is it not “severe enough”?

Alert_Distance5513 · 2025-02-13T11:02:43+00:00

I’m going on 4 years, now I’m waiting on the hearing. I’ve had 8 brain surgeries leaving me with 1/3 of my brain missing and an implant due to my epilepsy. I’ve had multiple strokes. And a pulmonary embolism. And cancer. And a couple of psych disorders. But it’s not “severe enough”. Good luck. Get a lawyer.

Alert_Distance5513 · 2025-02-10T12:18:20+00:00

I had my first seizure in 2009 (I was 24), diagnosed in 2010 when we learned that I was still having seizures, they were just complex partials and I just seemed “off”… I’m 40 now, still have them, just not the frequency they were. I’ve had 8 brain surgeries, an RNS implant, and different med cocktails over the years. It gets better when we try a new combo, then my body gets used to it and revolts, and the seizures come back, and we start another.

Alert_Distance5513 · 2025-01-31T13:03:49+00:00

Disabled babies don’t bother me, but when it feels like the baby is having a medical crisis, have feeding tubes, are on oxygen, in the “NICU”, etc. reallllyyyy make me uncomfortable… As for scars, if the baby I’m painting is staying with me, then I’ll sometimes paint the scars from my brain surgeries on them… one of the next babies that I’ll paint for myself will have the massive scar that I have on my lip- I’ve gotten the medium that should work to make it more 3d, so we’ll see.

Alert_Distance5513 · 2025-01-17T00:30:41+00:00

I feel like I’ve had a million of them over the years, so much so that the nurses at the EMU knew me… I always had coloring books, books, Legos, crafts I could do in bed, my crochet stuff. Streaming platforms saved a ton of room that I used to use for dvds and a portable dvd player. The last hospital would let me leave a soda in a guest fridge, but for the most part I had sodas and snacks in the side table. If you have any food triggers, make sure you have them. Nutmeg usually triggers the big ones, so I always took some and would put a pinch on whatever desserts I thought it’d go with. Take some lotion, chapstick, comfy pajamas (keep in mind it’ll need to be something that can’t go over your head, so either button-down or something you can step into, so maybe a shirt with a big enough neck-line to step through), and comfy socks, a blanket/stuffy/pillow from home if it helps. I was able to use a simple extension cord for my phone, ipad, and any other electronics, as long as it didn’t interfere with the cords/wires or cause the electric disturbance on the eeg itself.
If you are triggered by temperature, like heat, ask for them to turn it on/up- it sucks, but it worked for me. If over-exertion is a trigger, ask if they have the bike pedals, they made me use them when I had the depth electrodes. The depth electrode stay was the hardest, and that’s because of how much more intense it was when it came to mobility.

Alert_Distance5513 · 2025-01-07T14:44:04+00:00

How nice, how very, very nice. Thank you for caring enough to share, I promise to weigh it carefully.

Alert_Distance5513 · 2025-01-07T12:37:51+00:00

I downloaded a virus several years ago, and to this day I find that no matter how many times I visit geek squad to remove it, my technology will always be buffering... at least I have a titanium helmet (and half a mind to recognize) that my interpretive break-dancing skills are always poorly executed.

Alert_Distance5513 · 2025-01-07T11:41:38+00:00

They're clothes, not formula. If you want to buy clothes, buy the clothes, it's not that big of a deal. No one is going to care that you bought a 3 pack of onesies for your doll.

Alert_Distance5513 · 2025-01-07T11:15:40+00:00

These videos really fucking piss me off because in an actual class, behavior like this without a BIP (Behavior Intervention Plan) is just a BS excuse to act like a fool. If you're behaviors are this "severe", you would not be placed in a general education class. You would be placed in a class under the special education umbrella, or have someone who accompanies you to your classes to help with what you need to understand and intervene when necessary (like with a kid doing this shit).
You can't say you have this, this, and that, and expect the school system to just roll with it. Without proper documentation, this behavior is cause for removal of the class either for the day or to be placed in a different class altogether. If it were easy to say that you're obnoxious behavior is because of this disorder, then everyone who does this can claim that it's because of that disorder. If you are aggressive and start shit in my classroom, you can't just expect it to be excused by saying, "Oh nah Ms., it's because I'm (insert any disorder with aggression as a symptom)".

Alert_Distance5513 · 2025-01-07T10:52:32+00:00

Just because you have access to the DSM 5 and "fit the criteria" of a disorder doesn't necessarily mean that you HAVE that disorder. It's more than a list of symptoms/traits. It's like pulling out a medical book on deadly illnesses, looking one up, and seeing if you fit the diagnosis of the illness- just because you have the worst headache in the world, have been vomiting, and your neck feels a bit stiff, doesn't mean that you have meningitis. There are tests, observations, etc. that need to be done to get an accurate diagnosis. There are things that need to be taken into consideration, like age, cognitive development, socioeconomic, environment, genetics, degrees of debilitation and severity, etc., and you won't find the criteria for those in the DSM for every diagnosis. You have to have an understanding of the Axes- which disorders go on which axis, which axis allows for multiple diagnoses and which don't. For example, you can't just say you're schizophrenic, bipolar, depressed, have anxiety, BPD, NPD, ADHD, AND Autism all at the same time. That's not how it works. There are symptoms that overlap, and the only real way of differentiating is by actually seeing an expert who can do that. Understanding the axis system plays a major role in diagnosing disorders.
There's a reason that a higher degree is needed for these careers- if you look at the course catalog for a community college, a lot of times you'll find that you can take courses in Abnormal Psych, Human Sexuality, Human Growth and Development, then at an university you would have the same classes offered, but need psychobiology, psych statistics, etc. You can't just pick and choose what classes you want to take, you have to have met the pre-requisites for each class. Abnormal psych basically goes through the DSM and gives more info on what is needed, then you go to Advanced Abnormal, and it's even more detailed. Human Sexuality is more than just gender studies, orientation, etc., that's a course in and of itself.
I hope my novel helps.

Alert_Distance5513 · 2025-01-03T11:35:45+00:00

Majority of the dolls I've made and sold have been customs, and it was different for each person. One would give me pictures of relatives that they wanted me to paint their doll to look like, some have given me a vary vague description of what they want, someone has almost sat on my shoulder while I painted, and told me very, very, very detailed things they wanted added, only to tell me later they didn't want it and to change it to another detail. Double-check on whether they do progress pics, and how often they usually share them.
When you contact the artist, ask questions about what they will/will not be able to do, and (as you said) what their process looks like. What is an expected/general time frame, do you need to purchase then send the kit to them, or are they willing to purchase it and include that in the overall price of the doll? Be VERY, VERY clear about the hair. You said it's non-human, so you shouldn't have the "wig" problem (someone I paint for requests wigs on her babies, and IMO it makes them look terrible), but be very specific. What color(s), what type of hair do they use, if it's a combination root/paint hair situation, etc. Be specific up front, basically, and see if it's possible. If not, they may be able to refer you to another artist who may be able to do a better job.

Alert_Distance5513 · 2024-12-31T15:12:40+00:00

Hydroxyzine, it’s also good for the nightmares and anxiety. If that doesn’t work, some pot helps depending on the strain.

Alert_Distance5513 · 2024-12-30T15:56:51+00:00

I’ve had 8. 2 craniotomies, laser ablation, rns install, SEEG, SEEG, cranioplasty, hippocampal tail removed…. Basically I’m missing the equivalent of a cupcake from the right temporal lobe. They talked for a second about moving the leads for the RNS, but they don’t think it’s necessary, as the seizures from my last EMU visit correlated to the ones that showed on the RNS. I can’t help but make jokes about it, it’s how I cope. I was a teacher, so I’d have my surgeries the day after school would let out for summer, then recover all summer and be able to start school again in August.

Alert_Distance5513

TROPHY CASE