Long Time No Post!

Yo! I haven’t posted in over a year, I believe, but here I am!

I got earmolds last year in August, and it’s time for a new pair. I went with turquoise/black swirl before, and this time I’m going with red glitter! Acrylic this time- silicone is comfortable, but the glitter looks better in acrylic.

I’ve been watching Markiplier on YouTube. Last thing I watched was Resident Evil 7, and before that was The Evil Within 2. Now I’m re-watching Until Dawn, which is one of my favorite games! The game mechanics are super cool, and the graphics are amazing. I recommend it to anyone who likes horror and suspense.

I’ve been dealing with some health problems, like anemia, low potassium, high white cell count- quite a few things. I’ve also had severe nausea and constipation. Because I’m so nauseous, I haven’t been able to keep much food down. Due to that, I have lost over 20 pounds in less than a month. I don’t mind so much, because I wanted to lose weight anyway, but it’s certainly not the best way to do so haha. Anyway, I’m down from 165 lbs, to 140 lbs. Lose another 20 pounds and I’ll be happy!

I’ve been diagnosed with gastroparesis. For those not in the know, it’s basically stomach paralysis. Food doesn’t exit my stomach quickly enough, so I end up constipated and unable to eat because eating causes nausea and vomiting. I’ve mostly been able to get 3-4 bites of food before I can’t eat anymore.

I don’t have much else to say here, but I’ll be posting a vlog later on about Ehlers-Danlos Syndrome Awareness month and deaf awareness week. Stay tuned!


Why Hearing Aids Suck

aNormally I love my hearing aids and how they help me hear, but despite all the benefits, sometimes hearing aids just kind of suck. Don’t get me wrong- technology is great and I have no intention of stopping wearing them. It’s just cathartic to talk about how annoying they can be.

1. Earmolds get sweaty

It’s true. Whether you’re wearing acrylic or silicone or some other material, earmolds get sweaty and gross, and this leads to chronic ear infections.
2. Hearing aids + Glasses hurt 

I wear both hearing aids and glasses, and most people will tell you that they’re uncomfortable when wearing both. There’s just not very much room up there! Especially when you wear BTE hearing aids with traditional tubing. 

3. They’re extremely loud

Of course they’re going to be loud- they’re hearing aids! But no one tells you that the amplification is loud enough to hurt your poor ears, primarily stuff like traffic or vacuums or sirens. For the most part, my hearing aids are around 90 decibels, and most stuff doesn’t bother me. I work in retail though, and some stuff is uncomfortably loud, like tapping on the counter. 
4. Hearing aids are expensive 

The average hearing aid goes for about $1,200, sometimes more depending on the model and brand, and most insurances don’t cover them. However, there are programs to help pay for them, such as Starkey’s Hear Now program, which I have written about previously on this blog. Vocational rehab often helps, too, but even so, most people can’t afford hearing aids, so something like 70% of people who could benefit from hearing aids don’t wear them.
5. Feedback 

When hearing aids are loud enough, most of them give feedback- you know, that loud, high pitched squealing noise you hear from microphones? Yeah. Directly in your ear, too. Modern hearing aids have gotten better at preventing it, though!

That’s all I’ve got for now on why hearing aids suck, haha! Follow me on Twitter at @autisticiolite or Instagram at @deafectiveiolite! :3

Starkey Hear Now: Update 2

So! I received a letter in the mail informing me that I have been approved for hearing aid assistance! This won’t be a long post.
The letter said I needed to make an appointment with my audiologist to fit the hearing aids, which I’ve done, and it’s scheduled for next week. It’s been pretty simple. 
Like I said, short post! I’ll update again after the fitting.

Starkey Hear Now: Update 1

So, in my last post, I explained what’s required for the program. I did learn, however, that you don’t need to get an audiogram from a Hear Now provider- you only need an audiogram that’s less then 9 months old, and you can take it to the Hear Now provider, and have them sign off on it, on the HN paperwork. This saved me a great deal of time. I got my most recent audiogram from my usual audiologist, brought them to the Hear Now provider, and he signed off on it right then and there (well, mostly- he had to check with someone). He also checked the boxes for the model of hearing aid and color, both of which were my choice. Keep in mind, however, that you can not choose fun colors like purple or blue. 
Next, when I get paid on Monday, I will be getting a $250 money order to send in with my application. After that, it’s time to wait.
We’ll see how it goes!

Starkey Hear Now

So, my hearing aids are starting to really give up the ghost. They get about 4-6 hours out of fresh batteries, and to top it off, my hearing has changed significantly. My right ear seems to only be able to hear rushing and rumbling through hearing aids, and my left ear is sounding different. It’s time for new hearing aids.
Starkey runs a program called Hear Now that provides top of the line hearing aids to those financially incapable of funding their own or with insurance that doesn’t cover them. I’m applying this coming April- it requires several things, including a fee of $125 for one aid, $250 for two. I’m applying for two hearing aids, with some of my SSDI money, since that’s when I have the ability to do so monetarily. 
I’ve done some Googling in an attempt to see what people think about the program, how it went and how it helped them, but I haven’t seen any anecdotes about the process, so I’ll document it here. 
To apply, you must meet an income bracket (in other words, make only so much a month), including the income of yourself and anyone you live with. You must print out and submit the last 6 statements from all bank accounts, and any proof of other assets or accounts. You must have a hearing test that is no more than 9 months old (you can either get a hearing test done from a provider that participates in Hear Now, or you must have an audio gram that a Hear Now provider will sign off on and agree to). 
So far, I’ve got almost everything. I just need the hearing test, which I’m having done this coming Thursday. After that, I just stuff it all in a big envelope and send it off (maybe a small box? I dunno). They say to allow 3 weeks before calling to check up on your application, so assuming they don’t get back to me before then, I will be calling in the first week of April for an update. Until then…we’ll see.


Haven’t updated in a while again.
Mostly just writing to vent a bit. My hearing has changed slightly, primarily in my left ear, but my hearing aids still have adequate volume. I’ve just noticed that my left ear is fucking KILLING ME. The inner ear is so painful. I just had a doctor appointment this morning, and I really don’t want to go to the doctor again so soon, so I’m gonna try and tough it out and see if it goes away. We’ll see.

So, I haven’t updated in about a million years lol.


I’ve been pretty down and depressed lately, unfortunately, but I’m actually doing okay in life right now. I have a bit of extra money right now because SSDI paid mean extra $200, now that the state of Iowa is paying for my Medicare premium, and I’m employed at Walgreens now, so now that I have a steady paycheck, I’m doing pretty darn good financially right now.


Something I’ve been dealing with that has been a huge pain is not having clothes that fit. Over the last couple years, I’ve gained a huge amount of weight. Well, not huge, I guess, but I did gain weight. Before I started testosterone, I weighed about 90 lbs, and a few years on it I went up to about 115 or 120. Then I went up to 130. Eventually, I went up to about 150. And now, I’m hovering around 170-180. I’m only 5’2″, so I used to be quite small, and my weight now makes me pretty unhappy.


Like, I see myself in the mirror, and I kind of have a very slight double chin. As well, my face is quite a lot fuller, and I have a belly and my chest has increased in size quite a bit. Unfortunately, a common side effect of psych medications is weight gain, and that’s where mine is coming from.


A while ago, I was put on Tegretol for seizures and mood, and it worked for a while, but it also made me gain about 20 lbs. It no longer works, so I stopped taking it, and I can see already that I’ve lost a bit of weight in just 2 weeks. I know it’ll take time to lose more weight, but I’m working on it as much as I can. I’m trying to eat less pizza (more on that later), and I’m trying to snack less in bed before I fall asleep, because for some reason, I crave snacks while I’m in bed, like half asleep? Idk, I find myself getting sleepy, and then it’s like, “Hey. You should eat those chips. They’re salty and crunchy….” So I eat the chips lol.


So, I’ve amassed a decent wardrobe. I have several skirts I like, tights, nice jeans, a nice pair of pants, a couple hoodies, lots of t-shirts- however, since I’ve gained so much weight, almost none of my clothes have been fitting. They’re too small now. With the extra bit of money I have this month, I went ahead and bought 3 t-shirts from Lookhuman.com, and they arrive about a week ago. They’re fantastic! Very soft, they fit perfectly, and the designs are interesting and fun and cute. I plan to buy more later on, as I have a 10% off coupon from this purchase, so it’ll be nice.  :3


Anyone who has never gained weight rapidly wouldn’t understand how fucking terrible it is to go into your closet looking for something to wear, and discovering nothing in there fits anymore. You get out of the shower and go, hey, I’ll wear my favorite t-shirt, and you pull it on and even though it might have fit a bit snugly the week before, your arms are too big for the sleeves, and the shirt hugs your belly and makes you feel fat and unattractive and like it’s showing every single, tiny pit and fold and bulge on your body. It makes you feel ugly. It’s something I’m working on.


My roommate, Crobat, was employed at Kum & Go for several months, but the manager wasn’t giving her enough hours, the pay was low, and it was just generally a shitty job under a shitty manager. When she signed on, he promised her at least 40 hours a week, and when she left, she was getting maybe 30-ish. So, she applied to several places, and eventually she got a call back from Domino’s Pizza! And now she is a manager at a Domino’s, and the best part (for me) is that she gets 50% off all food items. What’s even better is that the Walgreens store I work at is a block away from her store, so when I’m off work, I can come over to Domino’s, grab a cheap, delicious pizza, and hang out on my phone or my laptop. She usually closes, and I usually work evening shifts, so it’s pretty decent. I usually work 5-10, and she’s often 5-12:30 or 4-12:30, so I don’t usually have to spend a ton of time waiting to go home.


Today, Crobat opens the store, so I had to get up at 7 AM and now I’ve gotta wait here until my shift starts at 5 PM, and I’m off at 10 PM, so it’s gonna be a long day here. I brought my laptop, at least, and I put an extra blanket in the car so I can lie down and take a nap there if I need.


Crobat and I have been doing pretty well. She found a fancy 46″ flat screen TV at Goodwill for $100, so she snagged it and we’ve now got a nice big TV in the living room, which is functional now! Ever since R moved out, we cleared the house of his crap, threw it away, and we worked on getting the house looking nice and being functional. We have a big couch and a decent chair and ottoman in there, a TV stand for the TV, an Amazon Fire stick for watching Netflix, Hulu, and Youtube, and a mini fridge just for soda. The mini fridge isn’t necessary, obviously, but it was a gift from Crobat’s father, and we figure it works just fine in the living room as a soda-only fridge.


I also have food stamps now, so that puts a lot of money back in my pocket each month ($125, to be precise). I still eat fast food, but I try to eat a little less lately, because I’m fully aware that I eat when I’m bored!



This month, since I have so much extra, unexpected cash, I’ve bought several fun things. I bought a Snapback (Peridot from SU themed, black base, bright green brim and trim, the word CLOD across the front in white), a fancy custom collar (from CollarFactory.com), the t-shirts from LookHuman.com, and some tights from SockDreams.com. So, now I have some clothes that fit, and a few fun things that I’ve been wanting really badly but couldn’t afford. Treat yo self, and all.  :3


That’s about it for today, I suppose. <:  Next post coming….whenever I get around to it.  ;3

Deaf Can

So, I have new hearing aids, and I love them. They’re transparent blue Phonak Naida Q UP, and I remember why I preferred the sound of Phonak over Oticon. 
I decorate my hearing aids, as I’ve shown on this blog before. I do it because…if I’m gonna wear them, I want to be proud of them! I long for the day that hearing aids and deafness are no longer something to be ashamed of, are no longer something a hearing person sees or learns about and goes, “Oh, I’m so sorry,” and then shuts down. 
The other day, I was hanging out at Target/Starbucks with my earphones in, and hearing aids out. As my roommate Crobat came to pick me up, a pretty girl at the table across from mine apparently piped up to say that she loved my hair. I didn’t hear her. Crobat told her, “Sorry, they’re deaf.” The girl evidently apologized, turned red, and looked down, as if she couldn’t talk to me because I’m deaf. 
That made me feel pretty bad, to be honest. Often, hearing people discover the person they’re speaking to is deaf, and they instantly shut down. They stop talking, they look away, they leave, because apparently deaf people aren’t worth talking to, or we’ll never understan what they said, so what’s the point? 
It’s a really harmful and…I suppose, frankly upsetting view to have. Among that are the ideas that deaf can’t read or write, deaf don’t know English, deaf don’t voice (only sign, obviously). Deaf can’t…. 
Deaf can’t. It’s bullshit. We CAN! Deaf can! We say, “Deaf can do anything…except hear.” And it’s very true. There are deaf football players, deaf actors, deaf doctors. We can do anything we decide to do, and yet, I still meet people who believe deaf people shouldn’t even be allowed to drive, or be allowed outside at night without a hearing person with them. 
Deaf can, hearies. Deaf fucking can. 

New Day, I Guess

No more job at Kum and Go. I was fired, basically for being disabled. Already talking to a lawyer about it, but other than that, I don’t really feel like talking about it right now. Maybe in a future post. 
Steven, the new kitten, is getting along famously with the other cats and with Remi. He rubs against Remi and purrs, plays with her and Jasper. He tries to play with Wheatley, but she’s not having it, haha. She tolerates it quite well when he rubs up against her, but she’s not really interested in interaction with other animals. She just wants to snuggle with me. 
When Steven came to us,  he was a tiny bit thin, so we’ve been feeding him kitten kibble and supplementing it with wet kitten food to fatten him up, and boy, has he gained weight! He’s normal kitten size now, and he’s got the average kitten belly. Gosh, is he rambunctious! He no longer climbs legs. We’ve discouraged that. Instead, he just climbs counters, so we have to constantly bring him down off the kitchen counters. At his first home, he was fed lots of human food, so we are trying to break him of that by feeding him NO human food, whatsoever, and that means pushing him away when he tries to steal food off our plates. 
I bought a laser pointer for him and Jasper, and they love it. Jasper will steal it out of the drawer and bring it to us! She loves it. 
I filmed a video on my YouTube channel about cochlear implants and me, and you should check it out! I had my appointment for that already, and I’ll be posting about that soon, so keep an eye out. I also purchased some tcoil headphones, so I’m gonna be posting a review video about those in a day or so, but probably today. 
Eventually, I’d like to make YouTube and activism my job, of sorts, so I’m going to be working on getting more involved in that sort of thing in the future. I need better equipment, though. My laptop is a…piece of crap, suffice to say. 
I think that’s all for now. Thanks for reading! 
Oh, as a bonus, here’s my latest hearing aid pimp:

He’s Gone!

So, the crappy roommate R is gone! Really, truly gone! I feel like I should feel bad for being so happy that another person is out of my life, but…I just can’t feel bad. He didn’t deserve to live in a place where he wasn’t paying rent alongside a pair of people who ACTUALLY contribute to the household. He has never even bought toilet paper.  :|


He left us an ungodly mess to clean up. It was horrible. It took us over 2 hours to clean out the room and move his mattress and box spring downstairs, and it took Crobat over 20 trips to the dumpster with a box or two each time. So, to get everything down there, it was a LOT of steps and a LOT of work. There were crushed cookies on the floor IN THE CLOSET. There were empty containers and jugs from drinks, like sweet tea and Fanta. There was a TON of clothing, and I’m baffled as to why he would leave so much clothing behind. It was like he just didn’t care.


Now, Crobat and I are aware that it was one big, final Fuck You toward us, but it still makes us mad at how nonchalant he was about being confronted with that. He said something along the lines of, “That’s what happens when you give someone such a short deadline to move out.” Bull-fucking-shit, R, you had exactly 3 weeks to get your shit organized and you waited until the last second. We told him on the 15th of June that we wanted him out, basically, and the last couple days before he left I asked him if he had packed and he said he was all packed up. The room had barely changed at all in that time. Pfeh.


R also had the NERVE to ask Crobat if we (Crobat and me) would store the rest of his stuff here, in our tiny apartment, and she flat-out said no. Apparently, it made him very upset, as the next time Crobat saw him, he was bawling. He knew we were going to throw away anything he left behind, way before the move-out date. There is no excuse for him waiting until the last minute to ask and/or get the U-Haul ready. Oh- that’s right, he moved using an SUV because he couldn’t get a U-Haul trailer or truck in time, because he waited until the last minute, and expected to be able to go pick up a trailer for an interstate move the day of or before.


Everything he did in regards to moving out was so, so lazy and awful. He could have made it easy on not only himself, but Crobat and me, but he chose instead to be a giant douchecanoe.


Either way, we’re glad to have him out. I have a bedroom now instead of camping out in the living room. We have a functional living room with a coffee table, a TV/game system stand, and chairs, and even a little mini-fridge in there. Jasper, Crobat’s cat, was pretty freaked out at first what with everything having been moved around, but she’s doing much better. My cat, Wheatley, could not care less! Remi’s cage is now in my bedroom and she seems to like that. It’s also got a dog bed and 3 blankets, so I’m sure she’s comfortable.


Pictures of R’s horrible mess to follow. By the way, he had a couple people helping him move, and it really makes me wonder what they thought as they helped him bring his small amount of possessions downstairs and what they thought as they saw that massive mess.

New Wheelchair! 

Yo! So, lack of updates due to working hardcore at my new job. It’s literally only a couple of blocks from my house, so I don’t have to wheel too far OR depend on rides from my roommate, Crobat! It’s pretty good. 
Anyway, I picked up my wheelchair this morning! It’s a Quickie Q7 chair, with removable plastic side guards, swing away armrests, and an angle adjustable footplate. It’s pretty snazzy. 

It’s fancy! It rolls so smoothly, and I absolutely love the color. I wasn’t sure if I would like it, but I definitely do. I might switch out the hand rims for my current ones, to keep them nice and all, but we’ll see. The back also folds and the push handles fold down as well! I was also given a Jay Basic cushion, so hopefully, that one does the trick for me. They tried to get a fancier cushion approved, but Medicare wasn’t having that. So, simple cushion instead. 
So far, even though I’ve only been in it for a few minutes, it’s definitely much, much more comfortable than my previous one, which was two inches too narrow and one inch too short. It makes a huge difference! I also like the open frame design much better. I feel like it’s kinda sleek, yknow? 
Anyhow, that’s my new chair. More pictures to come, but yeah! :D I love it so far. I’ll review it again in a couple days after I’ve had a chance to use it more. 

Anxiety! Aahhhhhhh!!!

So, things are going well, but I’m dealing with way too much anxiety today!!! D:  My psychiatrist always asks me, “On a scale of 1-10, one being nirvana and ten being spontaneous human combustion, how is your anxiety today?” Today, my anxiety is like a 9. I’m ready to cry and hold my blankie and lament about how my life is awful, but I have to remember and remind myself that this is entirely normal. When  you settle from a big chance, when things start going your way, you’re more likely to have a big break. You’ll break down, you’ll cry and lament exactly as I said, about how your life is terrible and you’ll probably never amount to anything anyway so what’s the point in continuing on, and you’ve made so many mistakes, there’s just no point!


But, in reality, there’s totally a point. If I had stopped working so hard, if I hadn’t kept going and making those stressful phone calls and all that shit, I wouldn’t be where I am today. I wouldn’t be on the verge of getting a new wheelchair, I wouldn’t be on the verge of having a bedroom, I wouldn’t have new, awesome hearing aids, I wouldn’t have the great roommate I have today, I wouldn’t have a job in my own town a block away from my house. I’d be so lost and in such a crap situation.


Anyhow, aside from dealing with so much anxiety, we have a plumber coming today to fix the toilet. It’s been costing us sooo much money because of some flow thing in the back of it that has basically been filling up and using way more water than necessary, so our water usage went from 2,000-2,500 gallons per month to approximately 11,000 gallons last month! And in the last two weeks, it had been 9,000 gallons already! So, wow!!! We’re on the hook for all that water, but that’s okay. Our landlord fixed it so that the toilet wasn’t using that much water, and we were just using a bucket to fill the back of the toilet and whatnot. It’s kind of a pain, ever so slightly, but it works, and it saves us money. <:



That’s about all that I’m dealing with right now. The wheelchair post will come probably next week or the day after, so! Be prepared for that! It’s gonna be sweeeet! :D