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!


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 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. 

Update: 4/20

So, it’s been another several months since I last updated. I’m not very good at blogging, but I’m trying to get better!


I have broken up with my boyfriend since my last post. It’s kind of a long story, but long story short, he displays a complete lack of respect or care for anyone but himself, and is rather frightening in his lack of individuality. He tends to copy people, and I’ve noticed he copies me quite a lot. I understand it’s likely primarily due to identity impermanence from BPD, but I don’t think that’s an excuse. So, breaking up with him meant that I have moved my things to the living room, and I live there now! It’s pretty comfortable, and I have a nice window where the cats can rest and look out onto the street below.


I have new hearing aids, as well! They’ll get here around mid-May, and I’ll have them programmed then, and then I’ll have pictures. For now, they are silver Oticon Chili SP9, so they’re not the most recent, but they’re top of the line for the model. I’ve found that I prefer Oticon’s sound to Phonak’s, because Phonak sounds a bit noisy and hazy. The only thing I dislike about Oticon is that the sound is very, very crisp. I’m hoping that having these programmed in the office will make it easier to find what I like and don’t like, so adjustments can be made right there with no issue. I already have new earmolds, and my tubing is bright purple, too! I can’t wait to get them. Here is what my current hearing aids look like right now:




They’re pretty cute! But, my new ones will be larger, and will help me hear much better. The earmolds are new- orange/purple/light green silicone with a shiny finish, full shell, with a large vent. To be honest, the fact that my right tubing is longer than the left bothers me greatly! I know it has to be that way, because that’s simply how my ears are, but it’s bothersome! OCD problems, weh. The earmolds are great, though- my last silicone ones were from Sam’s Club, and they started to cause pressure sores.


Health-wise, I have been rather…eh. I have been dealing with severe ear pain and pressure for a long time now, and I thought it was an ear infection, but it turns out that it is eustachian tube dysfunction. I have a bunch of fluid behind my ear drums, and it’s causing pressure and pain! I was prescribed Prednisone and a decongestant to see if it would help, but it did nothing but make me feel sickly, so instead, I have an appointment to see an ENT in mid-May. The next step is probably going to be ear tubes to relieve the pressure and let the fluid drain. The doctor I saw for it was wonderful, though. She is patient and kind, and does not find me to be a problem- just a complex case!


Aside from the eustachian tube stuff, I’m dealing with mysterious head pain on the left side, so we’re looking into that more. I’ve had an MRI, which came back clean, so the next step is a neurologist. I’ve also been severely fatigued, moreso than usual. It makes it difficult to stand for more than a few moments. I only feel semi-decent so long as I’m lying down. It’s been going on for a while.


Other than all that, there isn’t much to report! I’ll try and get a video update out soon. I just have to wait until I have the house to myself!

New wheelchair paint job!


So I painted my wheelchair this lovely blue color. I decided my footrest needed a little sprucing up as well, do I broke out the pink spray paint and went to town on that too. I also sprayed my hand rims with Plastidip, to increase the grip, but since I didn’t do it all the way around, it perked of this morning really easily. I’m gonna do it again in a couple days after I receive my new tires (which hopefully fit), cause taking the rims off is a huge pain in the butt.

Even though I only had the Plastidip on fit a few minutes, it DID increase the grip substantially. Also, it was black, so that’s cool.

I love creative advice, but….

So all spoonies and zebras out there will know that 90% of the time, when disclosing your illness to someone, they’ll try to relate by giving advice. You know-

“My aunt’s cousin’s cat had that! They cured her by rubbing her entire body with toothpaste, but it had to be the whitening stuff!”

“My nephew had that. His parents dropped $37,000 on an experimental treatment and he’s cured! You should try it!”

And so on.

Don’t get me wrong. We all know people are just trying to relate. That doesn’t really matter, though, and here’s why: The vast majority of the time, the advice given doesn’t actually work and was only thrown into the conversation in a lame attempt to relate to the affected person, despite being trivializing.

Now, I have Ehlers-Danlos Syndrome, hypermobile type. It sucks, and often, when I tell someone about it (because no one knows what it IS, they just know it sounds rare and scary), they start out with, “I’m so sorry,” and lead into, “You should try yoga!” The thing is…that’s the first thing doctors tell us. (Or, y’know, one of the first things, along with the insinuation that we’re making it up because we’re depressed, when in reality we’re depressed because we hurt like hell all the damn time.) And it works a small fraction of the time, but most people find no benefit from yoga, and only end up more tired and sore than they were when they started.

I think it’s so annoying and, often, downright insulting because it seems to imply that this person who has had no medical training whatsoever, and who has never had to live with a chronic, debilitating amount of pain (or any other disability or illness, for that matter), is knowledgeable enough about this rare disorder they just learned about to suggest treatment for it. In reality, the only learning they’ve ever done about said disorder is taking in the knowledge that it hurts and their cousin twice removed had it (if it’s even true).

I want to point out that even 99% of doctors aren’t knowledgeable about this sort of thing (EDS), because it’s a rare illness that many people don’t even believe exists, and it’s especially hard for POC, disabled people, and people perceived as women to gain access to decent medical care because research is done on cis, white, able-bodied white men. Everyone else is thrown under the bus. So, even if I do manage to get decent medical care…

…it still annoys the fuck out of me when people say, “Oh, hey, my mom had a deaf dog when she was younger!”

The fuck do I care if your mother had a deaf dog? Are deaf people like that dog to you? Fuck off.

Anyway, my point is that even though people want to relate and give advice-

1) they are not qualified in any way, shape, or form to do so
2) they tend to inadvertently liken the person explaining their condition to animals (dogs, cats, pigs, horses, etc.), or outright call them “less than,” in a sense

Sometimes, I have interesting tidbits to help people out, like for mosquito bites. For mine, I boil some water, and very, very gently dab a paper towel wet with it onto the bite, quickly! After gently drying it, I cover it in toothpaste for about half an hour, then remove it, and bam, no more itching for about 24 hours. Or, for instance, to fight an itchy, flaky scalp, I put a tiny bit of shampoo in my hand along with a spoonful of salt and rub it into my scalp nice and firm!

But the difference between my advice on how to deal with dandruff without a prescription and others’ advice on how to deal with a chronic illness is that my salt trick is usually requested information.

Disabled (and douchebags who stare)

There’s something I noticed since moving house from Massachusetts to Virginia- people are far, far more polite to me in Virginia as a wheelchair user.

I have used wheelchairs in MA before, while out and about, but it was very different. In MA, people were generally very rude! I didn’t notice how rude they truly were until I came down here. Up there, people stared- and I mean stared. Pretty much any disabled person out there will tell you, there are two different kinds of staring we get. The first kind of staring is kind of a catch-all for pitying/sympathetic/curious stares, which are mostly harmless, if still rather offensive. The second kind of staring encompasses the angry people- the ones who believe that you, as a young/alternative/poc/etc. person, should not be using the mobility aid you are currently using, because you are clearly faking, and should get the fuck out of your chair/drop your cane or crutches/throw out your walker.

The second kind of staring is down right insulting and, for me, rage-inducing. I’ve gotten plenty of it. I started out on a cane, which garners enough stares, seeing as I’m Black, punk, and young. I moved on to forearm crutches, which gathered even more stares, obv. Now, I primarily use a wheelchair as my mobility aid, and although it does mitigate my pain greatly (though I am still getting used to using it regularly), I used to get a lot of angry stares in MA- especially if I were in the same vicinity as an elderly person.

It’s so, so strange, but now that I’m in VA, people are nothing but polite and sweet and helpful to me. Everyone smiles and wishes me and Wah a good day. Strangers offer me the last basket so I don’t have to roll across the entire store to get one. They offer to grab something off a high shelf for me if they see me searching for something. There was even a slightly older man who offered to walk around the store with me, carrying my basket, to help me shop.

It’s bizarre. I’m not used to people being so helpful and kind, and I especially wasn’t expecting it in a place like Virginia. Color me pleasantly surprised.

Sick and tired

I’ve been in a lot more pain lately, and I can’t really pinpoint why, though I suppose with my conditions, it’s not really possible to do so. With chronic pain conditions like Ehlers-Danlos and fibromyalgia and similar stuff, sometimes you just feel worse than you did before. Sometimes you feel better eventually, and sometimes you don’t. It’s really frustrating, to feel what I imagine is semi-normal some days, and then going back to being so horribly, terribly sore. It’s hard, to be reminded all the damn time of how sick I am, of how I will never be able to keep up with my friends.

For instance- my roommate and friend, Wah, takes her dog, Peanut, to the park on the weekend sometimes for a good time, and she has invited me to come along every time so far. But…I remember that I can’t really say “Yes!” I can’t really close the laptop, hop in the car, and play frisbee with the dog. Even as I type this, I had to pause in order to slip on my ankle brace, because damn does my ankle hurt (not that I’ve done anything to make it hurt, other than existing). I have to plan days ahead of time to make such an excursion, saving up spoons by showering as little as possible, staying off my feet, staying under the heated blanket and keeping my joints warm and slightly exercised, keeping well-hydrated- all kinds of things to make sure I’m well enough to go to the park with my friend and her dog.

It’s so, so frustrating, not to even mention the poor treatment you get from strangers, being a young person in a wheelchair. But…that’s a post for another time.