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: Complete!

Hey! So, as I’ve posted about before, I applied to Starkey’s Hear Now program, and I was approved! I picked up my hearing aids yesterday, May 19th, and let me tell ya, it’s a huge difference in sound from my previous ones.
My last hearing aids were from Phonak, and while they were nice, these Starkey HAs are very different,and I would even call them better than the Phonak Naidas. They need some adjustments, obviously, but I’ve been wearing them for two days now, and I greatly prefer the sound of Starkey’s i110 to Phonak Naida Q50 UP. The volume is a bit louder than my Naidas, and I’m getting used to the new sound, but it’s going good so far!

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. 

Hearing Aids and What Happens When You Get Them

So, I thought I’d make a post talking about hearing aids, and the process of getting them. I’m going to try and make this as thorough and comprehensive as possible. 
I started wearing hearing aids about two years ago, and I’ve gone through several different pairs in an attempt to find ones that sound best for me, and fit my hearing loss. I’m profoundly deaf, so I require power hearing aids, but I haven’t always. My first pair were a tiny RIC (receiver in canal) pair by Starkey, known as the Xino. 
Before getting to that, I had to see my doctor about my hearing loss. She used a tuning fork to test my hearing (very basic test) in the office, and gave me a paper referral to an audiologist. I took that, made some calls, and set up an appointment with an audi. She did a hearing test, which involves listening to pure tone beeps and responding when I could hear them at a certain volume, and found I had moderate-severe hearing loss. That same day, she showed me a few different hearing aids, and ordered them after I left the office. 
As a side note, it’s important to do research and actually try out a hearing aid in the office if you can. I found after not trying out an RIC hearing aid, and receiving the ones she ordered, that the receiver (the speaker of the device) that went into my ear would not only keep popping out every 10 seconds, but it was also extremely uncomfortable. It hurt my ears. 
The audi said she would not change my hearing aids, and she refused to try out custom molds because I “just need to get used to it.” Since she was clearly not providing me with the service I needed, I went elsewhere. 
I sold those RIC hearing aids, and bought a BTE (behind the ear) pair. I went to Sam’s Club to get earmolds for hearing aids made ($80 for a pair), and had my BTE hearing aids programmed at a new audiologist. 
Now, the sound on the RIC HAs was not at all loud enough for me to benefit from them. My first audi said this was because she wanted to turn them up gradually so I get used to it easier. This is common, but many audiologists will avoid that and simply set the hearing aids at your preferred volume if you ask. 
With the BTE HAs, I heard much better. With RIC hearing aids, many people do not need a custom earmold, and the small, silicone domes suffice. However, I’ve found that earmolds are far more comfortable for me, and they aid in retention, so you won’t accidentally rip your hearing aid out of your ear by brushing your hair back or something. 
Now, earmolds are pretty simple. You go to your audi, and they will put a small foam block into your ear with a string attached to it. Then, they will use a large, plastic syringe to squeeze some colored goop into your ear, and the foam block is there to keep it from going in too far. You’ll wait about 5 to 10 minutes for the goo to harden, and it’s then removed. The goo comes in a few different colors and they’re pretty much all the same. 
The audiologist will take your ear impressions and send them off to have earmolds made. Between that, and receiving the earmolds, is approximately two weeks. Many audiologists only produce earmolds in plain clear, or one or two flesh tones (by that, I mean flesh tones designed for white people). To get earmolds in fun colors and glitter, you’ll have to go to a provider who works with Westone or another company that produces them. 
Your earmolds are sent back to your audi, and you can pick them up and have your hearing aids programmed at the same time usually. Different models and brands of hearing aids have different cords and 2 different methods of programming them, but it’s basically all the same- plug the hearing aids into a computer with cables and program them, or wear a neckloop that programs them wirelessly. 
Your audiologist will adjust settings until you find something that sounds best to you. This can take a while, but it’s worth it. They’ll usually tap on things, rustle the keyboard, speak the days of the week, etc. to help you determine if certain sounds are too loud or soft, or just plain annoying. 
Digital hearing aids these days have plenty of versatility in terms of programming. Many hearing aids have several different modes you can choose from, such as to eliminate background noise and amplify speech, or a program dedicated to listening to music, and so on. Many hearing aids also have T-coils in them, which allow you to listen to anything the magnetic field can detect, usually in the form of a neckloop. These can be found in some theaters and churches, and a few other places. 
So, now, your hearing aids are programmed and you’re wearing them daily, right? Well, you’ll probably need to change your batteries about once a week or two, depending on how often you wear them, how loud they are, and how often you use streaming devices with digital hearing aids. It is recommended to keep a spare pack of batteries in your bag, pocket, at work, in the car, etc. Then you’ll be able to change them and continue to hear, should you end up with dead batteries. 
With that, I’m going to talk about the hearing aids themselves. Many hearing aids come in both neutral/skin tone/hair tone colors, and bright colors such as pink, blue, and purple. The two big manufacturers who produce colored hearing aids are Oticon and Phonak. Oticon only offers clear earhooks, and Phonak offers several different colors of earhooks on their Sky line (though the earhooks also fit the other lines, you would have to order them online or through your audiologist.) the bright colors are actually for kids and teens, but many adults choose them for the color, and they do not operate all that differently from adult hearing aids. 
Most insurance companies do NOT cover hearing aids, unfortunately, so the vast majority of people end up paying out of pocket for them, and the devices can cost as much as $3,000 a pop, and up to $7,000 a pair. As well, insurance that does cover hearing aids almost never cover the brightly colored ones. 
It takes getting used to, wearing hearing aids every day. Earmolds are often itchy, and they cause your ears to be a bit sweaty and waxy. Eventually, you get used to it. It just becomes a part of daily life to pull your hearing aid out and screech your ear canals and press on your ears to alleviate the itching. As well, tubing needs to be replaced every few months because they grow hard and stiff, which causes the ear to hurt when wearing them. Earmolds and tubing need to be washed and cleaned of wax fairly often to keep them in good shape, and to allow you to hear better. 

Okay, so, I think I’ve covered everything I can think of about hearing aids! If you have a question, please leave a comment down below, and I’d be happy to answer it! Just for fun, here’s a picture of my current hearing aids. 

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: