Hello, hello! How’s everyone doing this lovely first Wednesday of August? It’s summer in north Texas, so things are toasty. It’s actually Tuesday and I’m preparing to stay up all night so I can have a phone meeting at 10:30 in the morning on Wednesday. Why, you ask. Because it’s easier than going to bed early, but still laying awake until 4am, just to get up at 8am to be in my chair and prepared to make the call at 10:30am. Yeah. Getting up is a whole 2-hour process. So, I hate anything before about 2pm. But I do love the nighttime. I’m usually pretty productive. But it’s also boring because all my friends have day jobs or kids or whatever and no longer lurk online all night with me. Ah well. I have stuff to do.
The plan includes, but isn’t limited to the following:
1. Catching up on reading. I’m a little behind on a couple of my review books. I somehow ended up with 4 books to review between now and Oct. 2nd. I should be reading the one for the end of this month and the one for mid-September, but I haven’t started the second one yet. I’m only two days behind, though. It’ll be easy enough to catch up tonight.
2. Do a couple of things for Dad. One involves his watch and the other involves signing him up for something. These things should be relatively quick.
3. At least read through a short story I started back in June. I should even try to work on it. This will depend on how long reading takes and whether or not I can find the motivation.
4. Mindless games. Especially when the first wave of tiredness hits around 4am. It usually takes about an hour to shake it off. Mindless games are great for this time.
5. X-Men cartoons. Maybe. I keep telling myself to watch the new one, but I haven’t yet. I also want to rewatch the old ones. Or maybe I’ll rewatch Gargoyles. Or The Weekenders if I can find it. Or maybe I’ll just skip TV. It’s not important.
Hello, hello! How’s everyone doing this lovely Wednesday? Things here are annoying, but fine. It’s late on Tuesday because I spent too much time on the phone with Medicaid. Again. Then, I avoided productivity in favor of watching TV with Dad. Shame on me, I know. I’m mostly just having trouble mustering up energy to do anything. I wake up tired. I stay tired despite having my usual amounts of caffeine. Sleep has been normal (just meh). Everything is just meh. Anyway, since I don’t have anything to ramble about, I thought I’d go on a rant. Don’t worry. Next week is the book review, so it’ll be a regular post.
I don’t remember if I’ve talked about it here, but Medicaid decided to force me to sign up for something called Star+Plus back at the end of May. I looked into it and everything I read said I couldn’t be on that program because I’m also on a program called CLASS, plus I’m on Medicare. So, I asked my CLASS case manager and she assured me I could be on Star+Plus, but not on the waiver program version of it. I took her at her word and didn’t think much about it.
Fast forward to July 1st when the program is supposed to activate. Some stuff has occurred that has me questioning things, so I do another search about Star+Plus. I find one super hidden thing that says people on CLASS can be on the program, but everything else says I’m not eligible for it. Add on the fact that I try to activate an online account with the insurance company that handles Star+Plus and keep getting told that I don’t exist, and I start getting antsy. Being the paranoid person I am, I contact Medicaid multiple times over the next week and a half to ask what’s going on and why my account isn’t working and how come they tried to put me on this program when I’m already on this other program, etc. For days, I get passed around to different departments and told conflicting things until someone finally escalates my case.
I feel like a Karen when I have to deal with the government and I’m not sorry about it. I’m always polite, though.
When someone finally calls at 8:30 in the morning, I don’t answer. I call back and get swapped around a couple of times until someone can tell me the woman who called just wanted me to know she was investigating my case and would call me when she knew more. Why she couldn’t just tell me that in the message, I don’t know. So, I wait and I check my YourTexasBenefits account every single day. On Thursday (Dad’s birthday), all mention of Star+Plus is removed from my account. Yay, right? I figure I’ll be getting a call that everything is straightened out and I’m back on traditional Medicaid.
Still hadn’t heard anything yesterday, so I called to get an update. I get passed around a couple of times because it’s the government and they refuse to give you a direct line to the department you need. But I end up on the phone with someone in the wrong department but who actually seems to know what she’s talking about. She confirmed I was right all along and that being on CLASS and Medicare precludes me from being on Star+Plus. Everything in her system indicates that I’m back on traditional Medicaid. She made a note that all mention of Star+Plus was removed from my YourTexasBenefits account. And she got in touch with the escalation unit for me. Supposedly, they’re still waiting for some kind of confirmation from Medicaid that I’m back on traditional Medicaid and that’s why they haven’t been in touch.
So, this has all been a case of the left hand not knowing what the right hand is doing. Because government. And I’m still waiting to officially be told I’m back on traditional Medicaid. Such fun. Ugh.
Howdy, howdy! How’s everyone doing this lovely Wednesday? Things here are okay, I guess. We had a nice little BBQ with the Minion, his wifey, the family, and the new neighbors across the street on Saturday. Other than that, things keep going wrong for Dad and I’m dealing with government bullsheet surrounding my benefits. Because of that, I forgot July is Disability Pride Month. I’m not feeling very pride-y. Every time I finally feel like my benefits are settled and I’m coasting along, the government decides to “improve” something that screws everything up. And it doesn’t help that I have to fight for everything I need. I’m dreading the upcoming election. If Cheeto gets in and that Project 2025 gains traction, everyone is going to be screwed except maybe super rich white folks. So, even though I’m not a fan, fingers crossed for Biden and the status quo! But I’m starting to ramble. This is your yearly reminder that Disability Pride Month exists. Disabled people are worthy of all the same things “able” people are. We are not burdens or drains on society or dirty little secrets. We are human beings. And, according to WHO, approximately 1 in 6 people are significantly disabled and that number is rising. Yay for fun facts!
Anyway, I decided to share an explanation of the Disability Pride flag. I might have done this before, but I’m too lazy to check my previous post.
Ann Magill’s original idea contained bold colors and a zigzag design, but after complaints from individuals with sensory issues (the design triggered migraines and created a strobing effect when scrolling), she revamped the idea with straight lines and muted colors that were grouped differently to avoid the negative effects. Here are some of the meanings behind the flag:
Black: The black background symbolizes the mourning of disabled people who have been victimized by ableism or lost to disability-fueled violence, abuse/negligence, and death.
Diagonal stripes: The stripes cut through the darkness (i.e., barriers).
Multi-colored: The disability pride flag includes all six standard international flag colors to indicate that the disability is a global thing.
Green: Sensory disabilities (blindness, deafness, lack of smell, lack of taste, etc.).
Howdy, howdy! How’s everyone doing this lovely Wednesday? Not a lot going on here. Just stupid government crap regarding my benefits. I can’t entirely blame the government for all my stress this time, because everything up until today was something else entirely and the people involved already know I’m not happy about how everything went down. Let’s just say stuff hasn’t been getting done in a timely manner. But today (Tuesday), I’ve spent far too much time trying to justify needing another hour of care every day. And I get it. The government doesn’t want to give just anyone benefits. They’re like giant companies that way. “You want healthcare and to be able to afford rent and food??? Damn commies.” But also, look at me. It’s pretty freaking obvious that I need care. I promise I’m not just a mooch. If they’d let me earn more than $1900 and change a month without screeching about taking my Medicaid away, I’d even try to be a productive member of society. But no. They don’t allow you to get to a stable place before they rip away the benefits that keep you alive. Just stay poor. Ugh. But that’s a different rant. Let’s get back on track.
I’m on a program called CLASS. They offer various services, but I only use the healthcare assistance service where they pay (actually Medicaid pays) for someone to take care of me. When I first got on the program at 18 after a ten year waitlist (yeah, no one even remembered signing up when we got the letter saying I was cripple enough for them), they only paid for outside help to come in. Eventually, they started paying family members, so Dad gets paid to take care of me. With all the prices on the rise and the fact that home healthcare works hadn’t gotten a raise in a ridiculous amount of time (because, you know, the Texas government), Dad requested an extra hour a day (no, he doesn’t get paid 24-hours a day because apparently the government thinks cripples are robots who just power down and require no assistance for far too many hours a day/night… as if normal human beings don’t have to pee or worse during sleep time, so cripples certainly don’t). But he’s up to 14 hours a day and the government is balking at a 15th hour. They’re forcing us to justify the request instead of just looking at my file and seeing my diagnosis (an incurable disorder that gets worse over time) and the fact that I have never asked for anything I don’t need and realizing that yeah, she needs help. It doesn’t help that they don’t reach out to me directly. There’s a middleperson. Things get lost in translation.
Anyway, it’s almost 8:00 and I’m getting hungry, so I’m going to stop ranting. But anyone who says cripples don’t work for their benefits and just get handouts have never had to deal with the government (state or federal). Fighting for shit I need is an entire job in itself. They should be paying me, but then they’d probably kick me off everything anyway. Blargh.
Hello, hello! How’s everyone doing this lovely Wednesday? Things here are okay. I’ve been procrastinating like usual, despite having an outline and basically knowing how the first couple of chapters should go. I blame Dad and TV, but I just can’t find the motivation to actually write. I don’t know why. So, I’m procrastinating even more by trying to find a faster way to type. I use the onscreen keyboard with the cursor, which is great, but slow compared to how I used to type. Anyway, I don’t type anymore because the laptop keyboards sit too far back for me to reach. I don’t know if I lost some range of motion or if touchpads got bigger or what, but I haven’t been able to actually type since two computers ago. So, I’ve been looking for alternatives to the onscreen keyboard. Fun, no? No.
I figured since I couldn’t reach the keyboard, I’d try getting a cheap plugin one that I can pull right up to me or into my lap to see if that would help. It’s the one pictured above. A Snpurdiri 60% wired keyboard. I got it on sale for less than $20, so I won’t feel too bad if it doesn’t work for me. It comes in different colors and it’s backlit, so that’s neat. The keys are easy to press and it’s small enough that I can pull it to me and into my lap, then get it back onto my computer and push it out of the way. But it’s too tall for me to use at the moment. I’ll try again when Dad’s not busy. Maybe a towel or something to prop my arm on will help. But it’s cheap and cute enough. If it works, huzzah! It’ll give me a better idea of what I actually need in a decent one when it dies. If not, meh. I’ll try something else.
The other option I’m considering is dictation. I tried Dragon Naturally Speaking when it first became a thing (yes, I’m old), but it was horrid and turned me off of that kind of program before I even started hating my voice. But Windows actually comes with dictation software now (it’s under the ease of access settings) and my camera has a microphone, so I don’t have to buy anything just to try it. However, I don’t like this option. Talking is not my favorite thing. People can’t hear me. I’ve been accused of mumbling. I’ve been told I have a slur (which I don’t believe I do, so wtf?). I use a ventilator, so I usually have a tube in my mouth. Even when I remove it to speak, I still have to repeat myself all the time. And I speak softly, which seems to create more issues. Talking is just not something I enjoy. At all. Plus, I run out of breath easily. So, this would be my last ditch effort to speed up the word flow and strictly used when writing.
I’m sure if I looked harder for adaptive typing aids, I could find other things to try, but I won’t. I’m not really that worried about it. Sure, I hate taking an hour and 45 minutes to type 1,000 words with the onscreen keyboard, but I’ll keep doing it. It’s not really a big deal in the grand scheme of things. I’m just procrastinating and I know it. At least I’m being semi-productive about it.
Do you use any special typing equipment? What about dictation software? As always, feel free to leave your thoughts or comments or questions here or on my social media pages!
Howdy, howdy! How’s everyone doing today? It’s been a while since I took a lazy day for the blog, but as I’m writing this, it’s July 4th, so I’m using that as an excuse. Woo ‘Murica! Not really. I’m not exactly proud of my country lately, but I do want a break… sooooooooooo… HOLIDAY! I’ll be vegging and possibly catching up on reading. Or just watching TV. I don’t know. Mostly, I just wanted to use this post as your annual reminder that July is Disability Pride Month. Go learn something about cripples! I’ll be back next week.
Hello, hello! How’s everyone doing this week? Enjoying your September and pumpkin spice? It’s still in the 90s here, so I have no interest in autumn drinks yet. But it’s time for the last ‘get to know me’ post unless someone picks another prompt or I decide to cheat and pick one myself next week. I might even look for new lists like this. I saw one about books the other day. Maybe I’ll hunt that one down for October or November. It’s just so much easier to write a post from a prompt. Anyway, if you’ve been following along, you’ll know that we’ve covered 47, 13, 43, 33, and 11. Today, Jen chose 27. The prompt is ‘work from home or office culture.’ I have no office experience, but I’ll try to think of something to say.
The list one last time.
I’ve never really thought about office culture before. If I compare it to college, I probably wouldn’t mind it. Being in a company where I’m doing my own assignment/job and mostly interacting with co-workers in need be or even semi-social situations doesn’t sound entirely horrible. Now, if it’s a group project, hell no. I hated them in school and would hate them at work. I was usually the one doing most of the work because I valued my grades. Put a paycheck on the line and I’d end up doing all of the work. No thanks. But yeah… as long as I could keep my head down and do my own work, I wouldn’t be opposed to a mundane office job. Pre-plague anyway. I wouldn’t want one now.
Working from home is fine. It’d be easier on me because my computer and everything is already set up for me. Being able to do things via email instead of face to face is divine. I would hate it if I was required to make phone calls. And random Zoom meetings would be horrible. But working from home sounds like a better choice overall. Which is why writing seemed like a good fit for me. I do the bulk of things on my own and (so far) everything else is done through emails and submission portals. No one has to hear my voice and that makes me very happy.
It’s me! And video calls are worse.
However, working implies that I get paid regularly, which I don’t. So, I can’t really tell you which of these scenarios I would prefer. I have to be super careful about any paying job I get because I have to worry about losing my benefits. It’s a whole thing. I mean, they took away my SSI and made me apply for a different version of Medicaid because the government started paying me a whole $12 extra a month which put me above the SSI cutoff. Not that anyone could actually live on what the government gives me. But I require Medicaid in order to survive, so my options are get a super high paying job with excellent benefits even though I have zero work experience, marry a multimillionaire and hope the prenup gives me a few million to live on just in case, or stay poor. So, yeah. Easy-peasy, right?
There you go. I’m not opposed to office work, but work from home sounds much better. What about you? Are you an office minion or do you prefer doing your work in your underwear? As always, feel free to leave your thoughts or questions here or on my social media pages!
Howdy, howdy! How’s everyone doing? Can you believe it’s already July? I hope everyone survived the fireworks and what have you with their sanities, pets, and houses intact. Three days to celebrate the 4th. Why did it take three days? Anyway, I don’t really have anything to ramble about, so I thought I would take the chance to remind people that the LGBT+’s Pride month might be over, but July happens to be Disability Pride Month! Most people still don’t even know it exists. I didn’t know until last year. Apparently some cities even have parades and crap for it. Not mine, but Chicago has been doing one for like 18 years. I believe NYC and LA usually do something too. There’s even a flag.
It’s not my favorite flag in the world, but it’s something.
So, why do we need a Disability Pride month? A few reasons, really. One, to help normalize disabilities and fight against the ableism that runs rampant in the world. I’ve always rambled on this blog about the various ways people treat me just because I’m cripple, especially when I get ignored at restaurants. I brush it off as people being idiots, but it’s blatant ableism. And it’s the tip of the iceberg. There are so many different forms of ableism that it’s hard to keep track. Aside from the way people treat the disabled community, there’s also lack of physical access because for some reason the government here in the U.S. thinks old architecture is more important than making it accessible. So, they grandfather buildings to make it so they don’t have to be ADA compliant. And these are just examples of things I have to deal with. There are many other disabilities, all of which have their own issues to face. Ableism is so ingrained in our society that even I’m guilty of it. I’m trying to be better, but it’s hard. Helping people to understand disability and to recognize that it’s a normal part of life is the only way to move forward towards a more inclusive future.
Two, to help fight for equal rights. In the U.S., people with disabilities are discriminated against all the time. Most of that stems from ableism, but we also have to contend with idiotic laws. We’re forced to choose between our benefits and things like jobs or marriage. And most of us can’t live without those benefits. I can’t live without Medicaid because it funds the program that pays for someone to take care of me. If I lose Medicaid, I lose that. But because the only way I could get Medicaid was by getting on SSI, a program designed for the indigent, I’ll get kicked off if I make too much money. So, I can’t get a job unless it’s a ridiculously good one (for someone with no real experience and zero references, hahaha) and I can’t get married (they would start counting my spouse’s income against my benefits). It’s basically forced poverty and it’s ridiculous. Disabled people deserve to be able to contribute to society or get married without risking our benefits. Sure, if I get rich and no longer need the benefits, kick me off, but I can’t get to that point without working.
Me after dealing with the government.
Three, to help disabled people remember that they are indeed people and that they aren’t alone. This might seem like an obvious thing, but it’s not. Disabled people internalize ableism as well. It’s hard not to feel like a burden, especially when you have to ask for help or accommodations or whatever. Throughout my teens and early twenties, I was constantly reminded of everything my mother sacrificed for me (she was a toxic narcissist, but she’s dead now, so yeah). I still have a hard time even asking for stuff I need (like having my nose wiped or needing pillows moved at night or whatever) when I know it will inconvenience someone (usually Dad). Part of that struggle is just left over from my mother, but part of it is the whole cripple burden thing. Seeing that I’m not alone, that other disabled people exist and live happy lives, helps a lot. So, yeah. Disability Pride Month is good for educating others, but it’s also good for people who live with disabilities every day.
I chose a creepy picture because that’s who I am, but it’s good to see I’m not alone in my struggles.
Like I said, the examples in this post are my own. Other disabilities have other issues, but there’s always going to be some overlap. Anyway, happy Disability Pride Month! As always, feel free to leave your comments, questions and thoughts here or on my social media pages!
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