[music: Killercats - Kaibu]
[intro: Pinhead: "I. AM.
PAIN."]
So I drive Randy's car for the most part, now, which is the gold Prius.
And I always forget to put this up cuz the other car has it on the license plate and
this one you actually have to put up all the time and we usually put it down because he's
tall and he can't see through it, but yeah, I definitely just went to the Starbucks without
proper identification.
Luckily they know me but dang.
Yeah, never underestimate having another wheelchair using therapist.
This is awesome.
This is working really well.
And she recommended that I find this video by Zack Anner called Pimp My Wheelchair.
So if I find that I'll link it below.
And I'm definitely going home and looking for that and hopefully we'll be able to watch
it cuz that sounds hilarious.
I feel like I look like trash, but oh well.
I found it easier to just film in chunks and um
go from there, so that's how I'm gonna do this, so…
I am gonna do, right now, the first 3 questions of the chronic illness tag and I'll link all
that information below.
I found it through Painful Hilarity.
I've been looking for shorter tags[cough]…shorter tags, but I think I can do this if I just
like…film it throughout the day.
Anyway, so the first three questions?
I said?
I don't remember.
Anyway, 1.
What have you been diagnosed with?
I…how should I do this…
I've been diagnosed with Hypermobile Ehlers Danlos Syndrome.
I've been diagnosed with fibromyalgia.
I've been diagnosed with dysautonomia.
Post-traumatic stress disorder, obsessive compulsive disorder, depression, which is
either just a consequence of the situation I'm in or actually, like, diagnosable on its
own.
We don't really know.
Um…others…?
#2: What will you tend to do at night if you can't sleep or when you can't sleep?
This is really bad but lately I've stopped taking amitriptyline on a regular basis, like
on a daily basis for controlling my depression.
And I explained why I did that on Twitter a little bit ago but basically I just don't
like how it makes me feel compared to some other medications that I've found to work
better but I don't have access to anymore, so…
I have all this amitriptyline left over, and if I don't take it on a regular basis it basically
works as a sleep aid.
So, if I can't fall asleep and I know I don't have to wake up really early for work the
next morning I'll just take one of those.
And like, last night, no, yesterday I woke up at 10am which is really rare for me now.
So, it works!
Or uh sometimes I'll, now that I have the heating blanket available now, now that we
found it again, I'll use that or lying on the floor sometimes works as well.
Or crying.
#3: Worst experience/side effect of a medication?
Has to go to a, oo…
It said side-effect, not withdrawal symptom, so I'm gonna go with Tramadol as well as Vicodin
because both of those spurred some very serious and awful gastrointestinal and excretory side-effects
which I would prefer to never experience again, so, that one wins, for sure.
And I'll come back to this tag a little bit later in the day, so see you then.
What is this…?
Why?
Alright, I think I might have mail, but I'm gonna do three more questions of this chronic
illness tag before I go down and check because that's gonna be a big whole ordeal, don't
know how long it's gonna take to get up the stairs or whatever, so I'm gonna do this first.
#4…
How has your condition impacted your mental health?
Check my twitter…
But seriously like…
Y'know, chronic illness puts you in a constant just…series of changes and new accommodations
you have to make and some of them are..stuff ya didn'…stuff you just don't expect…
So, I, it's a process…I'm not to the point where I can be cheerful and excited and "thankful"
about the whole experience yet, but…
Y'know getting the Ez Lite Cruiser I think is gonna help quite a bit cuz I'm gonna be
able to like, get out, and get out more.
Being on the first floor is gonna be another big deal, to fix things.
Maybe help me a be a little bit better about my situation…and um, once I'm working at
least part-time somewhere where I'm seated I think things'll be a lot easier.
But, y'know, gotta take it one day at a time and I am never gonna claim to be the most,
ha, positive or well-adjusted person about this quite yet, so, I dunno…
Keep watching for the progression, I guess.
5.
Describe your social life.
Um, online I have a pretty flourishing social life.
On Twitter, on the messaging services I use to talk to people back in Cincinnati with,
I talk to them every day.
I talk to people online every day.
I have a lot of friends I met on twitter, and some that I've met on tumblr who I still
talk to because I don't use tumblr a lot, at all, other than the transcripts for these,
now.
In person?
It's a little more isolated, or I'm a little more isolated.
But that's why I like the job that I'm at right now, and that's why I'm not keen on
the idea of jumping to another job even though it might be better for me health-wise…it's
like, I'm JUST meeting people.
So, I dunno…
A+ social life online and when it comes to people I consider my family, absolutely, but
when it comes to um, support systems offline, Randy's fantastic but he's one person, so
I should get to know more people locally, probably.
6.
What is the hardest thing to do when you are flaring?
And I don't really know how to take this, if this means like, emotionally-- what's the
hardest thing to do?
Or physically-- cuz that really varies, physically, depending on what's going on.
But um, just in general, I'm gonna say driving right now, because, with the amount of cognitive
dysfunction I deal with if I have elevated pain levels for a certain amount of time,
[cough] driving is becoming more and more difficult.
And um, yeah, because of the level of inconvenience that's gonna cause me, I think this one wins
for now.
Maybe I'll do this tag again in 6 months and I'll have a different answer, but for now,
that's what I'll say.
So, it turns out, Randy has the mail key, so I can't get what I was gonna check,
not yet at least, so I cleaned up a little bit, and I wanna go get some
either more tea or juice or something because lately I've been preferring to drink my calories.
But while I'm waiting, because it's like 5 o'clock, and I don't wanna go out when everybody
else is out, so just to pass some time I'm gonna keep doing some of these questions.
Alright…
7.
Do you have any worries for the future?
Nope!
Nope…not doing this…right now…nope.
[in the distance] NOPE!
I have makeup on.
I'm not answering that.
8.
Favorite comfort food?
These, Tazo green teas, which I hope to get very soon when I leave.
9.
Tell us a valuable lesson you have learned through being sick.
And, um, right now I'm not really in a good enough place to answer that
in any capacity…
Anything I'll give you is gonna be steeped in cynicism and so I'm…I'm gonna choose
not to answer this one right now.
10.
Name 3 things that you miss that were taken because of health limitations.
I have makeup on.
1) Running, 2) eating whatever I want, 3) dreams of the career I had chosen.
Alright, so I'm just gonna finish this up.
I'm gonna go out, and hopefully get more teas or something, and shoot some more things,
work on another EDS video that probably won't go up today, but anyway…
11.
Last one: How old were you when you started noticing symptoms?
Alright, this is gonna be…complicated…
So, like, if I look backwards I see EDS symptoms from birth on…
Fibromyalgia symptoms started when I was in my mid-twenties like at the end of grad school,
and that was when like, any chronic pain symptoms that I had had became so bad that it became
concerning.
I've had back pain, like my back pain started in middle school probably but never thought
that it was anything abnormal.
I thought everybody dealt with it.
So, that's what I thought about a LOT of things EDS-wise until very recently, so…
Yeah, so, it varies.
I'm going out in like, no braces…hardly anything because y'know what?
No.
I just want to go there, get tea, and come home, and I'm NOT asking for that much so
let's do it.
So here's the barrier we have to create if we want to keep the door open because Lucy
likes to run down the stairs.
It's just one of our tables with our closet door.
Ridiculous.
[music: Itro & Kontinuum - Alive]
And y'know what?
Here's some tattoo-related etiquette for you: if you see somebody and they have nice work
and like, you want to say something just say something to 'em.
Don't, like…
Don't point at us, don't talk about us right like, really?
If you wanna say something, and we're right next to you, just say it.
Just say that it's cool.
I just…
Involve me in your conversation that is very clearly about me, right in front of me.
I promise I won't be offended.
Just saying.
And to add onto that, I know I won't be offended because I've already heard the most awful
stuff anybody could ever say to a heavily tattooed person, ever, so, y'know what?
It won't be new.
So just, bring it on.
Bring it on.
It's for me.
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