Doctor Season.

For some reason all my specialist appointments (well, my 2 specialist appointments-epileptologist & endocrinologist) end up within a week of each other, consistently. Almost always.

Last time around, the epileptologist one went kind of like this. K is me, N is neurologist:

N: "So have you been having seizures?"
K: "Yes, especially when people flash lights in my face-because people are inconsiderate asshats, this happens a lot-or when I have to sit under a fluorescent light while the lecture slides are presented from a computer hooked up to a projector and they have a blazing white background!"
N: "And what do they feel like?"
K: *Insert 30 minutes of describing the spaciness that is an aura, the hell-if-I-know that is a partial complex seizure, and the wanting to die that is the postictal state here*
N: "So has anyone told you what they look like?"
K: "....yes. And here are phone pictures of me postictal as postictal gets. I don't remember taking them. Well, I remember the day after one. Seriously, I wanted to die."

And then she wanted to do all sorts of putting my meds into approved, ish, high ranges. OK fine whatever. Insert explanations of how all this can go wrong or right here. Exciting stuff.

Epileptologist this time:

N: "So have you been having seizures?"
K: "Only the triggered ones..."
N: "and how often is that?"
K: "Whenever entitled inconsiderate people decide the 'NO FLASH PHOTOGRAPHY' sign at swing dance doesn't apply to them & I can't chase them down and tell them they suck fast enough."
N: "...doesn't someone else do that?"
K: "NOPE! The person who is supposed to doesn't like making or enforcing rules. She was pissed enough about putting up the most passive sign in the history of the world. It has a smiley face FFS." (yep, I swear in the doc's office).
N: "That's unfortunate. How is school?"
K: "I got a 4.0 this term."
N: "What was your major again?"
K: "Biology/premed."
N: "Fantastic! So I don't think we need to do anything with your medication, but they do need to be more aggressive with that flash photography thing."
K: "...yeah, that's something that isn't going to happen. I'm taking the lack of enforcement as permission to be as nasty as possible about it."
N: "Oh those poor photographers. Have a great holiday & I'll see you in 6 months!"

Endocrinologist last time:

E: "It says you have adrenal insufficiency. Why do you have adrenal insufficiency?"
K: "No one knows. No tumor, no surgery, it's a mystery."
E: "We should find out. And change your steroid. And find out."
K: "I'm not opposed to changing my steroid, but I'm not sure any tests would show anything we don't already know...that I don't make ACTH."
E: "We should find out! *insert making plans for another ACTH stim test here. And wanting to look at my old MRIs, which are maybe 18 months old*
K: "I'll do it, but there's unlikely to be any mystery solved at all..."
E: "But you had an unexplained crash! That's unusual! We need to solve it!"
K: "Well, suing the school is stressful and I was probably sick and didn't notice. It wouldn't be the first time."
E: "We should at least look!"
K: "If you insist, Doctor House."
E: "What?"
K: "Nevermind."

And I did have the ACTH stim test and a draw of every hormone known to man and some that I'm pretty sure are just hypotheses at this point. The results were nearly identical to the first time I had one.

This visit:

E: "You switched your steroids? Is that going well?"
K: "Yep."
E: "You know the sick day rules?"
K: "Yep. And the surgery rules. And the vomit and injury rules"
E: "OK good. Your tests indicate that your ACTH release capacity is about 15% of normal & your adrenals function at about 50%"
K: "Alright."
E: "What do you do for work again?"
K: "I coach gymnastics..."
E: "Where?"
K: "NERDYNAME Gymnastics in TOWN"
E: "And what's a good age to start that?"
K: "...whenever someone has an interest...we have Mommy & Me through adults..."
E: "I'm asking because I'd like my daughter to have more activity & gymnastics isn't weather dependent. Do you have a website?"
K: 0.o *writes down information*
E: "We will check that out. See you in 9 months!"
K: 0.o 0.o 0.o all the way back to the lobby

Yeah. It's always exciting. And then there's new general practitioners.

GP: "It says here you have Ehlers-Danlos Syndrome."
K: "Sure do."
GP: "So what kind? Are your big joints or little joints more effected?" *looks waaaaay too excited*
K: "What used to be called type 2. I'm a 9/9 on the Beighton scale & am lucky to not have developed much pain, even though I dislocate easily."
GP: "And skin manifestations?" *Is seriously bouncing up and down."
K: " I'm covered in mystery bruis...oh, wait, you want to stretch my skin, don't you?" *hold out forearm* "Go for it."
GP: *looks embarrassed, then stretches my forearm skin & I think it made his week*

Yeah. Exciting.

Existential Guilt.

This is a world that would rather I weren't in it. That's a thing I and many like me fight every day-the pervasive feeling of being reviled and unwanted, infringing on everyone else's wish for a normal, uncomplicated little life where everyone and everything makes sense.

I try to not let it bother me too much, but sometimes it does. Like right now. Right now I feel as guilty for existing and subjecting other people to me as I imagine people who accidentally run over their children's pets in the driveway do.

There's just a lot of stuff that pours into that, you know? There's this ever present narrative that people with brains like mine don't deserve to exist. There's the deficit model of pretty much everything. There's all the everything about how hard it is to know or like or love or be friends with or consider human someone of my neurotype.

Then I go climbing, or try to, and they won't change the music to something that isn't seizuregenic. Hell, they don't even understand why I asked, or why when they made it out to be the HARDEST THING IN THE WORLD to change the Pandora station to "not electronic techno whatever the hell this is" I wanted my money back.

So it was a bad day and then we're in a car crash that was totally not my friend's fault in any way and it turns out my steroid injection is expired and no one at OHSU understands that even minor car accident + inadequate steroid cover = pretty big deal. And I sit in the ER waiting room in a cervical collar for 3 fucking hours, my pulse hovering between 46 and 52. And then they look at me and with my vitals in this whole BARELY ABOVE DEAD range and still argue about whether or not they should do more steroid cover.

Yeah, jackasses, someone with documented adrenal insufficiency is presenting in your ER after an injury (not a broken anything, but I TOLD YOU THAT MYSELF) with dizziness, low blood pressure, alarm-ringing-low pulse, nausea, etc and you decide to get in a power struggle about what to do about it? The only thing that would have made that better would have been if you'd offered me a medication I was allergic to.

Oh wait. You did. Because people like me aren't even worth the time it takes to review a chart.

So not only does society at large not want me to exist, but the people who are paid to see to it that I don't die are more concerned with being right than anything else.

And my back hurts. And I feel bad about my back hurting. How dare my back hurt, when I am so many other kinds of shitty to have to interact with any way? Who the hell do I think I am, to think that I'm allowed to feel bad and feel postictal and not want to die in the ER?

So you throw all that together, along with the knowledge that the failure of rock climbing + the car accident and subsequent ER visit totally fucked up my friend's day, and I feel like shit at the bottom of the ocean just for existing.

I keep seeing and hearing and being told that it's irrational and unacceptable for me to demand or ask for or even suggest that maybe something could kind of be not a big battle for me. But no. How dare I exist, how dare I think I'm human, even a little? Who the fuck am I to have needs and wants and try to get them taken care of?

So yeah. I feel inordinately irrationally guilty just for existing. Hope the autism tragedy complex is pleased.

And Then I Land In the ER Again...

I spent Saturday feeling kind of crappy, tired, low energy, even took a nap. I don't nap.

Then comes nighttime, when I got all nauseated (and promptly started eating antiemetics like candy) and lightheaded and dizzy and spaced out and fell over when I stood up.

"Fuck. Fuck this all to hell", I say.

See, I have adrenal insufficiency, and I was showing signs of adrenal crisis, which can be fatal. My pulse bottomed out at 38 or so when I was at the ER, so it's good that I went, but it sucks.

I can't forget, not even a little, that I have a marginalized brain. It's all around me. I don't understand people, they talk to me like I can't understand anything because of how I speak, the autism tragedy items are everywhere. Because of epilepsy, I am not allowed to drive, there are seizure-causing strobe lights on bikes and police cars and parking garages and a German restaurant (no, really, I have NO IDEA why either). The message comes through loud and clear: this world is not made for brains like mine, the world thinks brains like mine are inferior, and if my brain wants even a little consideration I am going to need to fight for it. Accessibility policies rarely address that brains like mine exist and need accommodations as well-there is no escaping that I have a marginalized brain, and I'm pretty used to that.

But I can forget I have a marginalized body. For the most part, it can do anything I ask it to do-I can dance, I can climb, I can do flips, I can navigate my environment with relative grace and ease. In my base state, I don't have a marginalized body at all. The world is set up for people with my physical abilities to do their thing efficiently.

But then I throw up, or I break a bone, or in the case of Saturday, a black cat crosses my path. Then I remember that my body isn't something I can use as nonchalantly as other people can use theirs. You can't tell, I go weeks at a time without being conscious of it at all, but this strong and coordinated body I inhabit is fragile indeed. When the shit hits the fan, it goes critical in a big way.

Since I don't think about it much-I take replacement steroid along with my anticonvulsants and I carry an emergency injection kit-the whole thing freaked me out. Generally speaking, adrenal insufficiency impacts the day to day running of my life not a bit. For me, at least, it is a rare and uncomplicated metabolic disease. Take pills every day, don't throw up, don't get significantly injured, all will be well.

Then it slapped me in the face out of nowhere and I remembered that it is a big thing. And the ER people made it pretty clear that they didn't find this sudden failure of homeostasis (which is basically what an adrenal crisis IS) to matter a whole lot-I got the steroid replacement about 3-4 hours after I told them that I felt like I do after I throw up, 2-3 hours after my pulse hit 38, hours and hours after I told them that it was all wrong.

And it wasn't cool at all. In terms of ER treatment, there was probably a bit of intersectionality-my chart says autism, so they didn't realize my inability to make even a little sense was, like, a thing. And I'm a woman, so of course if I am not actively being mauled by a bear it's not necessarily really a real thing. I heard that attitude before, actually, right when I was diagnosed with adrenal insufficiency-and then they saw that I'd been functioning on 1/4 normal cortisol levels and were revealed to be misogynist shitfaces.

If it had been out of nowhere seizures, I have adjusted to those being the occasional addition to my life, but no-precipitant adrenal crisis really scared me. I already restrict some of what I do because of seizures, I'm more cautious of going places alone then I'd like to be because of seizures and autism related communication issues--I was ok with AI being something I don't acknowledge much. After this one, though, I'm going to be wary for a while and it sucks!