Posts by Carol Barrett2

wiredmarlin29 said:It's such a shame you can't hold down a job...
Good luck to you all, though. Living with mental illness is tough.
If you could actually work, maybe try some odd jobs? It’s hard when you're sleeping all day,
but please, try to do something for yourself. Good luck.

+1

+1 again, DR

Harold Anderson3 said:It feels like the priority is always about maintaining those three distinct constituent groups in Canada, while nobody seems to give a second thought to how people are actually supposed to afford to live. Honestly, it’s pretty frustrating to watch. 😢

Honestly, those local leaders are just out there looting everything in sight. 👎

I'm with you, 👍 and +1

Harold Anderson3 said:Yeah, I'm aware of that, but from what I can gather, he’s looking to collect two separate Social Security checks, which just isn't how it works. It's pretty much the same situation here in the States.

It’s honestly a bit tragic that we have to sit here debating laws that even the people drafting them don't seem to fully grasp.
The way I see it, you could potentially draw benefits from both a German pension and an American one, but trying to pull two from the US system? Not happening. Why?
It’s just absurd.

It wasn't disability—it was disability combined with a survivor's benefit. The lowest disability rate in my area is 50% of the full amount, and he'd be getting 70% of his dad's minimum pension.

Legally, you're entitled to it here. But it looks like the local Social Security office is going to screw it all up. They told him the disability would go through their department, but now they're saying it won't.

Total clusterfuck. 🙂

Harold Anderson3 said:How much are you getting for disability versus what the survivor benefit would be? Is there a massive gap between the two?

My mom receives her disability, plus an additional stipend for caregiver assistance which is handled through NASA.
So, she effectively has two sources of income at once, but honestly, even when you add them together, it isn't exactly a fortune.

Since I'm working, I have my regular paycheck to lean on. Otherwise, making ends meet would be a real struggle.

Disability is about $120, and the survivor benefit would be closer to $140. That’s just your average pension in Canada. My old lady has the lowest tier, so she’d just get what she’s already getting—around $200. If it went to my dad, it would be his, and she’d keep hers.

We didn't have any steady income for years. We've been hit by everything under the sun during this whole COVID mess. Lost my dad, ended up in psych wards twice—once because of my dad's stroke, and the first time back during that initial lockdown.

If the old woman wasn't working, I don't know where we'd be. We were a charity case then, and honestly, we still are. As for me, I can't work. I sleep half the day—seriously, I suspect narcolepsy at this point—so even if I wanted to pull a shift, I just can't.

It looks like they officially pulled my ability to work. It says right here, verbatim: "unfit for employment."

🕺

I used to deal with those tremors and shakes—mostly just pure stress, honestly—but things have settled down a bit lately. Now, though, it looks like getting that survivor's benefit is going to be a total uphill battle. Apparently, because I’m already drawing the minimum disability check, they're saying I won't qualify. Which is hilarious, really, because according to the law, I should be entitled to both.

The folks over at the Social Security Administration basically told me the disability payments wouldn't go through their way, even though they definitely should.

Rebecca Rivera3 said:I don't get one thing: my psychiatrist keeps telling me I have domestic violence issues, but I separate myself whenever I can. Plus, there's the guy I love, who's under 2.
I just don't understand why I can't seem to meet someone for something serious. I don't even have a psychiatric diagnosis; my neurological condition is in full remission and has completely receded. I'm attractive, financially stable, mentally resilient, and highly educated—yet I keep running into idiots. It feels like despite everything, I’m destined to be alone, unable to find anyone so I won't be lonely and can actually start a family one day.

You'll find someone eventually, but it takes time. 😉 I see it happening to people around me all the time.

On a side note, a lab tech once told me I had all the symptoms of toxoplasmosis, suggesting that my schizophrenia and excessive sleeping might be linked to it—but you can't even get tested for that kind of thing here in the States.

Right now, I'm getting $200 in disability, and I'm in the middle of the paperwork to claim a 70% survivor's pension from my late father. That would bring me up to maybe $450 total, which isn't much more than the absolute minimum social security check.

Everything went south during that whole COVID-19 mess. Because of how things hit back in March 2020, I ended up in the psych ward, and then right back there again in December 2020 because my dad had a massive stroke—which was pretty brutal. 😢

So, I was in psych, and he was in the ICU. Same floor of the hospital, just two different wings.

Joshua Parker76 said:For those of you on antipsychotics, when are you actually taking yours—morning or night?

The Psychiatrist who first put me on Risperidone told me to take it in the morning, but then the private Psychiatrist I saw later suggested switching to nighttime.

Right now, I'm taking 1mg of Risperidone at night.

So, here’s the breakdown for today: two in the morning, one at lunch, one in the afternoon, and one before bed—that makes five doses of Abilify in total. 😵

Brandon Foster7 said:Get this paradox: in America, you see
Look for answers in high places, ancient pyramids, or even just a bowl of beans. You’ll probably end up with an official diagnosis first..

That’s basically how they say it here, too. I don't know about all that mystical stuff—I trust medicine—but finding a real cure for myself? That’s going to be a long shot.

My old Psychiatrist told me to take Moditen in the morning, Prazine at noon, and then both Moditen and Aripiprazole at 3 PM. There is absolutely no way in hell I can swallow that last combo together. It wipes me out so hard I'm barely getting four hours of sleep and waking up feeling like a zombie.

So, I decided to follow his daughter's advice instead. Now I'm doing Moditen plus half a dose of Prazine in the morning and afternoon, and I added the Aripiprazole at lunchtime on my own. I told my old doctor that she actually knows what works for me better than I do—after all, I'm the one living with the side effects.

We’ve gotta figure out the right balance for me. I got the Prazine from a different Psychiatrist who replaced the old one, even though I specifically asked for something to help with calming down and mood swings. And the Aripiprazole? That came via the old doctor's daughter.

I requested both drugs myself. Honestly, my mood was all over the place. Prazine is usually for psychosis, but Aripiprazole is more for those mood shifts. My moods were shifting constantly because of everything else going on and how people were treating me.

And yeah, things weren't exactly great. 🥱

So, I was chatting with this guy in the medical field—I think he’s a lab tech or something, honestly hard to tell—and based on what I was telling him, he mentioned it might be toxoplasmosis. But then he goes on about how finding a place to actually get tested for that here in the States is apparently a massive headache. I don't know... I've been complaining about narcolepsy for years now, too, so where am I even supposed to go in America to get a straight answer on this stuff?

Harold Anderson3 said:It seems everyone faces their own unique set of challenges. For him, it might be the frustration of not being able to live the life he envisioned, while for you, it's the weight of watching your son struggle against this condition.

Still, I try not to view everything through such a dark lens. With the right treatment plan, there can be significant progress. Globally, about 1% of people live with schizophrenia, which translates to roughly 75 million people—that's almost like the entire population of Germany.
Within those 75 million individuals, the outcomes vary wildly.
Some people, including young adults, end up in residential care facilities where they rely heavily on others and state institutions, whereas others manage to earn PhDs in their respective scientific fields after receiving their diagnosis.
Those are obviously the two extremes, and most people find themselves somewhere in the middle.

The key is to stay active—to get out of the house, try to work or study, and keep up with sports or hobbies just like before the diagnosis. It's so important not to let the pressure of the illness or the side effects of medication cause you to retreat into yourself. I wish I had better advice to offer than that, but it's really what I believe. 🤷

True, but I just can't. I get totally lost in unfamiliar or even semi-known places. There are basic things I simply can't manage on my own. Just recently, I nearly had a complete meltdown. My mom and sister were getting a bit impatient with the neighbor, and that immediately threw me off balance.

Sandra Lee2 said:If you actually have narcolepsy, talk to your doctor; there are treatments for that.

I’ve got my suspicions about her, but I can’t say for sure. Anyway, I'm currently out in Canada, so none of this really matters.

Harold Anderson3 said:I am so sorry you're dealing with such a heavy load of side effects. So many people struggle with them, though I suppose I’m one of the lucky ones who seems to tolerate psychotropic meds quite well. I don't really experience any adverse reactions, even while taking 50-100 mg of Risperdal. It’s perfectly normal for me to feel sleepy from the Risperdal and Lamictal, but I don't view that as a side effect, since those medications are designed to calm you down and help you sleep. That’s why I take them right before bed. It used to be a real struggle back when I worked the night shift, but even then, I’d just time them for after my shift so I could sleep during the day.

I have a friend who also struggles immensely with side effects, even when he's on tiny doses. He deals with psychosis, but the physical toll of the medication really wore him down, causing him to withdraw completely from everyone. He acts like his life is essentially over, and he’s even had psychotic episodes triggered by physical ailments. He became convinced he had a brain tumor—he could actually "feel" it—and he had basically made peace with dying. As it turned out, there was nothing wrong with his brain at all; it was just the psychosis manifesting as extreme hypochondria.

I'm sharing this because I think it's important to realize how much our own thoughts can influence the outcome of our treatment, whether those thoughts are positive or negative. We need to stay grounded in reality, but we also need to try and maintain some optimism (just don't get too carried away with the news about 🙂)

Being okay is hard. 😬 You're right about everything. I'm doing alright now, though. Currently on Moditin/Pfizer, Prazine/Pfizer, plus some afternoon Azolar/Pfizer and Appalachia if needed.

I'm functioning surprisingly well—well, as well as I ever can, anyway. I can handle things on my own to an extent, but if I need to head outside my neighborhood into unfamiliar areas, I can't really go anywhere without someone coming along. I even need help with bathing. It's a mess, honestly.

Since I started using these forums, I've been sleeping less. I don't know if anyone noticed me complaining about narcolepsy before, but I was sleeping way too much and was constantly lethargic. Now I sleep less—maybe two or three times a day for 1 to 5 hours at a time. Before, I'd be sleeping every 10 to 20 hours, and I didn't complain about the drowsiness nearly as much.

My brother-in-law actually asked me recently if I'd noticed I wasn't mentioning being sleepy anymore. Apparently, back when I used to visit them with my old man, I was always talking about how tired I was—sometimes even nodding off right there.

I'm doing better on these boards, I won't lie. But I tell my family that it's perfectly normal to end up back in the psychiatric ward sometimes, since relapses are just part of living with schizophrenia and bipolar disorder. They just don't get it.

Who knows? Maybe they're just worried about me.

Harold Anderson3 said:I’ve always felt that Risperdal offers one of the widest effective dosing ranges among all antipsychotics, where you might start as low as 25 mg a day and work your way up to 600.
So, while 500 mg is definitely getting close to the upper limit, I wouldn't necessarily call it the "standard" recommended dose.

For me, 25 mg was the dose, but hey, at least my kidneys didn't fail because of it. My legs swelled up like crazy and I couldn't even pee. I just can't touch certain stuff—meaning things like Tylenol, Risperdal, Qsymia, Appalachia, Modafinil, or Risperdal. Even Penicillin is off the table for me.

Risperdal messed with my kidneys, Qsymia makes me itchy, taking Appalachia with Modafinil just makes everything worse and sends me into an aggressive state. Risperdal sent me over the edge and landed me in a psych ward, and Tylenol did the exact same thing—my body probably just can't process it, because they actually found morphine in my urine. And Penicillin? It gave me a rash like a little kid.

🕺 😵

I’ve been feeling pretty rough for almost a month now. Honestly, there are moments where I just want to swear my head off—it all comes flooding back when I remember how everyone, even my own people, has constantly belittled me. They just don't respect what I say; they act like they're always right and treat everything I mention—whether it's about vision issues or those weird sensory floaters—like it's some kind of joke. It leaves me feeling pretty drained and, yeah, a little depressed.

So, this last psychiatrist I saw went ahead and prescribed me Prazina—which is actually for schizophrenia—even though I told her straight up that I needed something for anxiety and depression. And mind you, I’m already taking Moditen for the schizophrenia part, plus Apaurin to actually get some sleep. To top it all off, she basically nudged me into signing a waiver saying I was refusing hospitalization, which isn't even true. I didn't refuse anything.

People used to tell me that my old psychiatrist over at the EPA said if I was ever spiraling, I should come see him and the team, and if they couldn't help, the final option would be being admitted to the hospital.

It just brings back all those memories—like how it took nearly a decade of fighting through red tape just to get my disability benefits approved, even though I was entitled to them from day one. There’s so much more involving all sorts of stuff, but I've already touched on some of it. I can't even bring myself to recall the rest, and honestly, I really don't want to.

I'm heading back to see a new psychiatrist at the EPA tomorrow. It's such a shame they won't let me stay in the hospital anymore, mostly because they've started charging for every single exam now. It's frustrating, because the doctors back when I was actually in the hospital seemed to understand me so much better.

+1 @steelskipper9

steelskipper9 said:Hang in there. 🙂

The idea that others might view us as the bad guys—well, it just didn't sit right with me—I’ve never really seen things from that angle before. Though, I did have one person—someone who joined my family through marriage—say something to me once that was so cutting, I won't even repeat it here.
What’s most disappointing from a professional standpoint is the social worker involved. Honestly, you have to be incredibly narrow-minded to think that way, let alone actually say it—especially when you're supposed to be an expert on the situation. It just goes to show, you really can encounter anyone. 👋

I don't mean we're literally evil, but more like... perceived as such. Like we're going to go out and commit some villainous act. Most people don't look at us that way, even if there are cases where someone with a diagnosis does something bad—but for the most part, we're the victims of crime, not the perpetrators.

And if we're talking about losing control during an episode and doing something reckless? Sure, sometimes that happens. But it isn't common. I personally caused a minor car accident like that once.

And I'm still dealing with the fallout from it today.

steelskipper9 said:It happened three times back when I was around 18 or 19—and it was always the exact same diagnosis. Honestly, if I had been a bit more level-headed, I probably would have stopped after the second episode. Some of us just can't function without medication!

It really hurts that some people view this as a character flaw—though, truthfully, I’m not sure which is worse: that judgment or the stigma that comes with being ill. 🙂

We can manage, but man, it’s a massive uphill battle. I don't give a damn what most people think, but let's be real—it still matters. They look at us differently, like we're somehow "bad" people instead of just people dealing with an illness.

Don't let them get to you. Hang in there—unfortunately, this is just the hand we were dealt. 🙂

steelskipper9 said:Hi there!
After my second psychotic episode, I was diagnosed with paranoid schizophrenia. For a long time, my entire world revolved around one goal: getting better. After enjoying fifteen years of steady remission, I started thinking—not out of nowhere, mind you—that maybe I didn't actually need medication. I had been diving deep into the world of anti-psychiatry and critical psychiatry, and I decided to go all in. Well, guess what happened? Predictably, I hit a third episode. Thankfully, I’m recovering well now—and honestly, it wasn't thanks to any medication. But enough about my personal history.

The psychiatrist Karl Menninger once said: "Attitudes matter more than facts."

Here is why:
You could say this over and over again until the truth truly sinks in. No matter how hopeless a situation might seem, no single fact is as significant as the attitude you bring to it. What you believe about a circumstance can defeat you before you even take a single step toward addressing it. You might let a hard truth overwhelm you before you even begin to tackle the problem. On the flip side, maintaining a reliable, optimistic mindset can actually shift your reality and allow you to overcome those very facts. 🤔

Three times in fifteen years? That’s a pretty decent average. Personally, I’ve hit seven times in nine years—including two stints being hospitalized for less than a year during this whole Corona mess. The first time was because the Corona stuff had me panicking about my sister and whether we were all going to starve, among other things. The second time, late last year, my old man passed away from a stroke. Honestly, he just collapsed right at the foot of my bed, convulsing and losing his mind from the shock.

Thankfully, neither my old man nor my sister lost their minds. They both ended up hospitalized, right across from each other—he was on one side of the wing, I was on the other, just connected by the same hallway.

Nicole Barrett76 said:I am doing alright. I am not currently working.

I rarely travel to Washington, D.C. nowadays. I only head that way when I absolutely have to attend medical checkups, which happens maybe once or twice a year. Honestly, I haven't felt much reason to visit since my sister, who used to live in Washington, D.C., moved away to work in Germany.

For those of us living with severe visual impairments or total blindness, we represent one of the most difficult categories of people with disabilities to employ. Out of every hundred of us, only six actually hold jobs. It wouldn't even be that number if the European Union hadn't pressured our government to finally address the issue. Before we joined the European Union, our employment rate was a mere two percent.

I secured my disability benefits a long time ago; frankly, if I hadn't, I fear I might have done something desperate, either against myself or someone else. I receive $500.

It gives me chills just thinking about how Carol Barrett2 managed to get her income sorted out starting from only 75 miles.

Generally speaking, I believe an individual in America can only live a decent life on $3,000-$$1167, and that is assuming they aren't burdened by any credit card debt or loans.

What are me and my old lady supposed to do with such tiny incomes? My disability is Category II, and she’s on the lowest possible pension. With what we make, God forbid, we might end up at a soup kitchen one day.

Luckily, she's still mobile and resourceful enough to work and pull us through. But she’s also struggling with her own health issues—she's been told she has a brain tumor.

Between my Category I disability and her rock-bottom pension, if she also had disability status as an oncology patient, we might barely scrape by. Even then, money would be tight.

Technically, we aren't considered a "social case" according to the state, so we don't qualify for utility subsidies. Meanwhile, they hit us with interest and fees, just ballooning the debt and threatening to seize our studio apartment.

When my wife passed, they almost took her entire pension to cover those utility debts, while the interest just kept piling up regardless.

Unfortunately, I'm not working, and it's unlikely I ever will. I struggle in unfamiliar areas—I lose my sense of direction and everything—especially in places I don't know.

I can manage to move around my own neighborhood on my own, but anywhere else? No way. I need someone with me; heck, they practically have to give me directions just to move.

My vision has been failing for years now, and it’s possible I’ve been sick since I was a kid. Maybe I had some form of high-functioning autism that morphed into schizophrenia, or maybe it was always schizophrenia.