Like, y'know what?
Maybe I'll try vlogging... so I'm at my dispensary and I just like...blew the attendant's mind.
I told her that Peppermint Mochas are available year 'round.
yeah, they're available year 'round.
You can get 'em all the time!
[Intro: Pinhead saying "I AM PAIN"]
Just got home.
So, I'm not gonna, I'm NOT gonna film this but this is what I'm gonna have to climb up
on the other side of this building because we currently live on the other side
of the building
in January we'll be moving to one of these first-floor apartments, but uh, it doesn't
have the little step, there.
there are no steps to it so that's super awesome BUT for the next several minutes this is what
I'm gonna be going up
this is why I need to move
I think what's funny is this idea that I'm gonna vlog, like, maybe daily when I have
no, NO idea what I'm doing I'm using my iPhone right now and that's
just how it's gonna be so
getting up the stairs wasn't to bad.
it really wasn't...compared to how it was.
I used my legs the whole time so that's pretty sweet.
but yeah, I've done a lot of what I need to do today.
I was gonna go to the bank, until I realized you can't just deposit a bunch of change...cuz
that's where I'm at in my financial journey... so, I changed my plans a little bit.
let's see what the cats are doing.
she can't figure it out... this has been a constant issue.
BABY, just go through it...
just push through it!
okay... alright she is like backing out to get out of frame maybe she's scared of YouTube.
oop, is she gonna get it? no.
Meesha's under the bed and under the bed is gross so we're not gonna go there.
um apparently the app store (windows) is tied to whatever language you type in?
cuz I was a Latin teacher and I make some Latin teacher content so you use this keyboard
so you can use certain pronunciation and markings...the more you know.
it's so cute how I tried to make a backdrop, but I can't really...it is what it is.
here I am!
I'm painandcats_ (said: underscore) on twitter. and um, here I am in my The Future Is Accessible
tank top, my bi flag, my unrest stuff.
not my glasses, cuz I don't have glare-free (lenses) so that sucks.
this is basically my first time trying this so it's going to be very choppy. you'll notice
I'm stopping it and starting it and I haven't even tried to edit this...
I don't even know what program I'm gonna try for it.
something easy and freeeee... or something that has some kind of like...free trial.
but I haven't done this before because I always felt that putting too much stuff up in video
form was a little intimidating. also, I was teaching last year so it just, er, not the
best idea. and then, um, now I feel like I need to be able to create something day to
day even though my ability to do a lot has been minimized so continuously, so...
I feel like even if I'm in bed I can at least do a few little shots.
the cats are always doing something, so...
I found something to do, so, I'm gonna do the #ThisIsMyEDS for day 1.
I was invited to do this a few months ago by annieelainey and I felt really bad but
the timing of when that month was kinda coincided with a lot of just...trauma relapses and fears
and all this other stuff so I couldn't make it to putting something up online publicly
especially in video form.
so 'I'm gonna do that right now after I deal with some stuff online.
well let's see how it goes.
I'm 31, I don't have any shame anymore...so if it goes poorly I'm just gonna put it
up anyway.
so, let's see, introduce myself, I'm Laura, my pronouns are she/her.
I'm agender but she/her... my EDS type is presumably EDS 3 or hypermobility because
I've never had a genetic test before.
but I definitely pass the EDS specifications so there's no reason to believe it's wouldn't
be hypermobile eds. but, 'know, I mean, it could be something else.
who knows if I'll ever have a genetic test? or will have access to that?
but I do have a diagnosis of hypermobile eds as well as fibromyalgia and any of the little
friends that go along with those two maladies.
how am I feeling today?
um...tentative? because I feel decent enough, I went up the stairs, I went out to do what
I needed to do, but I'm still really worried because I have to work 6.25 hours tomorrow
so um, I am worried about getting through that.
and if I overdo it today, I wont' be able to.
I'm probably not gonna leave the house again which means not leaving the apartment area
because going up the stairs just takes too much.
that might be the difference between me finishing out my shift tomorrow or not so...I'm not
gonna chance it because I'm poor.
alright, so...can I explain eds medically in a sentence?
um...everyone has glue that holds their body together and mine is...awful.
usually if people aren't too squeamish I'll just bend my elbows (I meant shoulders) backwards
for 'em and that basically tells them what they need to know...and they don't ask me
any questions.
but I'm pretty against doing party tricks on camera without the most ridiculous of,
like, content warnings before, and I'm NOT gonna do it now.
that's what I'd do if I'm really trying to hit it home or if someone's gonna give
me trouble about my parking.
um, buut, basically if you can explain and understand what collagen is, you can understand
what a deficit in it is, and uh, go from there.
what's your favorite analogy for how eds feels/ or what eds is like?
let's see...it feels like you're literally coming apart.
my ex-wife works at Lego and we had Legos everywhere and I should take some from her
the next time I see her but...do I have any?
I went from a house full of Legos to one where I could not find one.
anyway, sometimes eds feels like... you see how his head is a little...not exactly attached
but still not detached...that's how any joint could feel at any time so you just have to
snap it back in or deal with it.
that's how it feels. and that can cause some muscle strain. and not to mention if your
joints are doing that you can only imagine what some of our other body parts are doing
if our collagen is that bad.
pots is a big issue, or dysautonomia in general, so if you stand up too much you just might
be crashing back down.
you might lose consciousness or at least a little bit.
I usually lose some.
but I usually don't actually faint.
what are your symptoms and comorbid illnesses/conditions?
alright I'm just gonna go through the list supplied and I'm gonna link this google
doc as well what am I looking at?
there it is.
so, you can look through this as well.
I have chronic pain to the point where it's pretty severe now.
if I work 8 hours I should not be driving myself home.
I also cannot read past a certain point if I'm in too much pain.
joint pain, muscle pain, hypermobility... lax and fragile joints...
frequent subluxations and dislocations...
easy bruis--YEAH.
I find bruises where I don't even know where they come from. and that's just inconvenient
sometimes.
and I work in a place where I bruise myself all the time ad sometimes it's just a mystery.
I don't have stretchy skin.
I've had some patches of stretchiness but I really don't have that stretchy of skin.
if anything, it's super fragile.
like, I work as a barista at a large national, international coffee place,
and even the tape that comes out sometimes with the orders-- THAT'S cut my skin before
and that's just ridiculous! this is ludicrous! so... it's really fragile and I also have
these little spots all over which really caused me to tattoo over most of them when I had
the money to. and when I was able.
so now I don't see it so it's not really an issue.
so yeah, really not too stretchy on the skin.
just super fragile, SUPER bruisable, super tearable-- like it tears easily... also very
dry, so kinda terrible.
chronic fatigue, like, I don't really know how uh, I don't really know how to quantify
that.
cuz I feel like I've dealt with a certain level of like, uh
always there fatigue, y'know, fatigue always.
like if I'm in more pain I'm in more fatigue.
let's put it that way.
um, I don't have CFS or me or CFS/ME-- I don't have that, so it's not that kind of fatigue.
chronic migraines?
I don't really get migraines that bad, which is pretty awesome.
I do sometimes and they are debilitating.
I don't know if I have a Chiari malformation at all, I haven't had any serious investigative
work done at all to see what's VERY wrong with my back, or anything like that so I don't
know.
POTS?
I went to the cardiologist on a VERY good day.
lie, I went on the treadmill that day.
it was awesome.
so that day I was doing fantastically and um, I was feeling very mild symptoms so they
told me I didn't have pots. they did say I have dysautonomia, but I bet if I had gone
like three days ago when I could barely stand, I would probably get that pots diagnosis so
who knows.
gastroparesis?
I don't have any reason to believe I currently have that.
I have no reason to believe I may be headed in that direction, but I don't have any issues
like that right now
Sleep disorders... like, yes?
Pain causes sleep disorders.
I don't have any seizure disorders.
I have anxiety and depression for a long time.
I don't have bipolar depression or uh bipolar disorder.
lower vision?
again that's another thing I don't really know how to quantify cuz I thought I was "normal"
for a long time.
but I don't really have any peripheral vision.
so, I can see...this doesn't...this doesn't...no
uh, I can't really see too far to the sides and my depth perception is hilarious.
a lot of the times when I'm driving I'm just
doing a lot of educated guesses. which is really bad.
I don't drive that often.
just to and from work usually.
I don't think I have any hearing loss, but it's one of those things that um
someone would probably have to tell me if I do have any mild hearing loss.
but I wouldn't know.
pulmonary issues?
not really.
cardiovascular issues?
like, I guess with dysautonomia, so, check? but my cardiologist said I was good enough
to not really go back to him.
cognitive impairments can be pretty severe especially if I'm' in enough pain, so, yes.
sometimes I can't read.
twitter is sometimes the best I can do.
difficulty concentrating is part of that.
irregular body temperature?
yeah, but that's gotten a lot better since we've moved to the desert.
I definitely have a limited ability to walk.
I am pretty far in my ezlite cruiser fundraiser, so that's pretty awesome and thank you to
everybody who's helped or spread the word on that.
so that's really, REEEALLY gonna help things.
it's gonna be awesome.
um I don't know if I have osteoporosis yet.
another thig that I just need to get investigated whenever I get access to that and the money
to do so, so...
I might be 40 by the time I figure that out.
I knew, I know I do a little bit [cough] I know from about 3 years ago that I have degener[stumble]
didisk[stumble]
degenerative disc disease.
and I knew I was showing signs of that.
um. the rheumatologist wasn't very interested in looking into it.
as far as I know I have no SI joint disease.
number 6: how does eds effect your daily life?
I'm not gonna go into this.
um, go to my twitter if you really want to see
I've been having daily breakdowns on how this has been limiting my life.
and how quickly it's been happening.
esp. in the last few months, so...
I don't go to the hospital often because we just don't have the money for it and the last
time we went they did more harm than good and I'm never going back there.
if you live in the Tucson area and want to know which hospitals not to go to, please
contact me on twitter.
so, I've been using high chairs at work to sit and take money from people as well
as braces.
I use braces all the time.
I have a back brace, which isn't the best, it's just whatever I could afford from amazon
and anything else I have from CVS.
I was gonna get some thumb braces but the company I was gonna get it from were moving
on to a different website, so I'm waiting for them to open back up so I can get that.
and oh, also the money, I'll have to wait for that.
I have my cat cane-- everyone who knows me knows that, so...
I'll leave a link to that as well this is my preferred handle.
my use of this is just becoming to hobble from one side of the area to the other.
and I'll be using the ezlite cruiser once I get it.
I have a manual chair, but it's the worst. and I hate it, and taking it in and out of
the car is basically equivalent to the spoons I would use hobbling with this [cane] so half
the time it's not even worth it.
cuz it' like a Tetris like fit to get into it [the car].
I do work, um... that's been part of the issue: I've had to cut down my hours because I
have to be on my feet at least a little bit, so, that intensifies the pain, which has finally
made it so I'm unable to work through it.
I've outlined what my plans are on twitter and I'm not gonna right now.
I'm on bedrest when I'm not working.
if I'm not on bedrest I'm right here.
I'll probably put a video from my phone where I'm spending a lot of my time.
here's the space; here's my cane, my Halloween blanket, but this is the couch. and I usually
don't have this flag up here, but I wanted something nice.
I thought it'd look nicer in the video than it did, but it didn't.
so, there's my table, all the stuff is really like, shoved over
to the side.
There he is!
Potato!
Xanthias! nope.
it's either here or in bed.
if I'm out here it means I'm having a better day.
I feel like I'm injured any time.
I feel like I'm potentially injured any time that I am putting pressure on my feet.
even when I'm lying down or sitting down.
there's something out in my foot right now for sure which is causing a lot of pain when
I move it a certain way but every bone in my foot is ready and willing to jump out of
alignment the second any kind of pressure is put on it, so a lot of that, moving around,
I've just gotten used to because it's been happening for the last year, so some of that
pain I've become a little more acquainted with and um...just like power through it but
some of it, it's NOT that kind of pain. and I haven't been able to acquaint myself with
it yet, so...that's why I'll be in the chair.
it's not my hips, and it's not my knees, it's my feet.
so...
so yeah preventing injuries?
I need the wheelchair. and I need space so I can use it and also have a job.
or whatever or even live.
luckily the wheelchair apartment we'll be moving to looks a lot better.
and it looks like someone with a wheelchair has lived there before, so hopefully there's
even more accessibility features inside.
who knows?
not me.
I am NOT gonna talk about how this impacts my mental health, or emotionally because uh,
you can see my daily breakdowns on twitter, and I'll link that, but I'm not gonna
talk about that on camera.
so that's it for that
and I'll find more things to weave through this but I'm sure it's getting a little
long as it is, so.
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