I cannot stand people who have that argument that technology is bad. That it’s making people dumber or more antisocial. I feel like disability always gets left out of that type of conversation, which isn’t fair.
When I say technology here, I’m talking about social media types. Like cellphones and laptops and even gaming consoles. Communication technology I guess?
Some common complaints I’ve heard are (but not limited to):
No one calls anymore, all they do is text
People always got their headphones in and aren’t listening to the world around them
People who are always on their phone!
Why do people need to take pictures of everything instead of just enjoying the moment?
I see technology as a means of enhancing disabled people’s lives. We can share support stories with someone half the world away who has the same rare disease we do. Those of us experiencing sensory overload can use our phones to block out harmful stimuli and play calming music. We can take photos and notes during doctors appointments, while walking down the street, or virtually anywhere when our shitty memory won’t let us remember anything later. Our hearing impaired friends can read a text instead of struggling to understand a conversation during a phone call. Those of us with visual impairment can point our phones at an object we can’t see; whether it be too far away, too dark or too bright, and zoom in to see the object! There’s even TONS of apps and programs that exist to help us.
It’s amazing!! It makes our lives so much easier! I know that I couldn’t function the way that I do without my phone. I am that person who takes photos and writes notes and prefers to read messages rather than struggle through the conversation.
So to the next old man to harass me for being on my phone can shove it! Don’t make fun of me for my accommodations. I need my phone to exist in this very ableist world.
Unsurprisingly, I had misophonia. It seems to go along with all my other neurological symptoms. But a large part of this may be psychological as well. I grew up with a mother with very few teeth, so all sorts of mouth sounds (chewing, lip smacking, teeth sucking noises) really REALLY bother me.
According to the mayo clinic, misophonia is simply a strong reaction to sounds. For me, it produces extreme anger. Like an urge to do something violent to the person making the noises. It makes sitting in quiet break rooms where coworkers are eating, absolutely miserable. So much so, that I’ve skipped lunch a few times and just sat outside somewhere that’s got background noise.
ASMR stands for Autonomous Sensory Meridian Response, which is described as a pleasant tingling sensation that begins at the scalp and moves downward.
Lucky me, I can also experience ASMR; not everyone can. For me it starts as a tingling sensation in my right leg and travels upward to my skull. From there is feels like tiny waves of tingling going from the base of my skull and fading away into the top of my skull. It’s very pleasant, very relaxing, and very enjoyable.
Recently my misophonia hasn’t been bothering me as significantly as it used to, and I think it’s because of ASMR videos I’ve been watching to relax. I started off watching role plays and gradually made my way into uncharted territory… mouth sounds and eating videos. I couldn’t listen at first, but slowly, I began to not hate it. Maybe because of how it was presented… Soft light and pastel lip gloss while a pretty girl makes kissing sounds on one side of the camera’s mic?
Just this morning I sat in a meeting where a coworker was eating a bagel. And I didn’t feel overcome with rage. There’s some science here that I haven’t quite figured out yet, but it’s good. It’s got something to do with nerves, I know that much. I have what I think is a pinched nerve in my right leg (sciatica?) and that spot where I feel the most pain is where my tingling begins. Then it hits the nerves in the back of my head (where I get RFA treatments for occipital neuralgia) and ends at my eyes becoming very sleepy. It’s a pleasant experience, but I can’t be expected to get up and get things done after. Because I’m usually asleep on the couch.
It definitely did something. But what, I am not 100% sure. I do know I am going to try it again, as soon as I can afford it. I will need a higher dosage and a better flavor. Having something that felt like warm vanilla smoke in my mouth was WEIRD. I’m not a fan.
So far the CBD verdict: Very much like. Made the day to day much easier to deal with, and I had to take significantly less OTC medicines.
I’m thinking about going to the Oct 7th one in Philly (2+ hours from the house) Here
But I’m also seeing there’s one in DC on Oct 15th, the weekend after Here
I can’t really run.. I’ll probably try to do the walks for each one. The price is about $30/$40 per person depending on which one I go to. (Or both! lmao) Of course DC will be the one that makes me feel more at home. There’s no way in hell I’m going to the one in West Virginia. Also want to go to take photos of each race.
Please let me have money/transportation by the time these things come up.
I bought it. Or at least some version of it. I know I originally wanted to try the Genesis CBD but when I had the money in my account to purchase, they were sold out :(. And I was going to order, THAT day, no exceptions. I wanted something that would ship in time to be a birthday present to myself.
I ordered the 500 mg. It tastes like warm vanilla smoke, but in a bad way. It’s hard to get down. I have to chase it with few large gulps of water. And then it still leaves a gross taste in my mouth.
At this point, I’m not 100% sure if it does anything. The first couple times I took it I got a little sleepy (or this might have been completely unrelated sleepiness; I’m always tired and working on correcting my sleep disorder.) I’m going to continue to take this and see what happens. I want to do a proper test on a few bad headache days and see if it gives any sort of relief or even distraction, and for how long. I’ll make up a little chart and everything.
How I usually dose it is about 2 droppers full in the morning, or whenever I begin my day. And then 1 to 2 (or even 3) as needed for extra pain throughout the day. Is it doing anything? Am I experiencing some sort of placebo effect? Find out next time on the next episode of DBZ…
(I started this post like 2 weeks ago when it actually was my birthday, but never got around to finishing/uploading until today).
A friend recently reccomended to me hemp oil for pain. Her suggestion was Charolette’s Web (https://www.cwhemp.com/) which I would LOVE to try. But my bank account disagrees until I know for sure it will work.
I have it. My new neurologist (Dr Rao at Hopkins) looked at my MRI for about 2 seconds and diagnosed me with it. I didn’t know what to say besides “oh”. And I thought back to everyone who came to me and said “Have you heard about this thing called Chiari Malformation?” And my answer was always yes, but I’ve already looked into it and I don’t have it. JOKES ON ME.
I’ve got to find exactly which of my MRIs shows it.
So far my treatment is to drink water; 2.5 L a day, which sounds like torture to me.
The more research I do, the more my symptoms match up pretty much exactly.
And that makes it Migraine Awareness Month again as well! This year I don’t have any sort of elaborate photography project or anything planned (well, not yet at least) but I’ll figure out something to do for it. Right now I just want an awareness shirt I can wear. But I can’t afford the fucking $20 to order one online.
Just like the Lamictal, here I go again. I’ve started dosing down on my Namenda. I’ve known for quite a bit now that it hasn’t done anything. I mean I don’t think it has. Maybe there was a small benefit at first? Maybe there was no benefit at all? And it was just some sort of placebo.
Whatever the case, I’m dosing myself down to be completely off of it. I’m only doing my morning dose for 1 week, and then it will be none at all. That’ll leave me with only like 2 medications I take everyday?
The one where you just want to stop taking all your medications and just suffer.
To punish your own body for punishing you for so long.
Lately I’ve been giving that feeling serious thought. Because of side effects.
Side effects that my doctor has “never heard of before” and that “shouldn’t be happening because of this medication”. Nevertheless, I’m experiencing them. And every time I stop the medication, these side effects go away. It’s at the point where I would rather have high blood pressure than suffer through this side effect.
I do want to lessen the amount of medication I take daily. Although taking medication makes me feel like my conditions are more “real” and it’s not just all in my head as I’ve been told for years.