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.

Since I couldn't livetweet it

I had every intention of livetweeting as much as I could of my surgery yesterday (Laparoscopy, for endometriosis). Partly for the humor-I'm funny when drugged-and partly to help me remember things, since most people don't remember much before or after.

So I'm gunna put it here instead, so that I can remember what I remember.

My roommate's mom came & got me just before 8:00AM-8:30 check in, 10:00am surgery. They asked me a bunch of questions that I'd answered before, kept asking how I was (hungry, thirsty, & terrified), kept making sure I was the Neurodivergent K who's chart they had, stuff like that.

The gown was, like, recyclable. Seriously. It was purple and made of this paper/cotton mix. It plugged in & inflated these plastic bag things with hot air...it looked like I had absolutely comically GIGANTIC pecs. Unfortunately it sounded like a vacuum-I would have liked it warmer but it was so loud.

So after I got all gownified the official presurgical nurses came in to do my IV and make sure the incision site was as clean as could be & to take my necklace & bracelet from me. Noooo. The IV lady was really good...most people need a few tries, but it was in before I noticed. They were asking the same standard questions, I was answering the same way I always would (so, most people read me as a bit quirky or obnoxious), and they kept telling me I was adorable. Weird, but better than the people who are dealing with my anesthetized ass thinking I'm a jerk, right?

It took a long time for the anesthesiologist to come in. Like, a LONG TIME. Apparently my chart had walked away. But he told me exactly what they were going to give me & explained how they were going to prevent anesthesia awareness (a rare phenomenon that really really freaks me out). Telling me that it's rare isn't helpful, so are a lot of things that I've experienced, but telling me that even those rare cases mostly occur in emergency surgery when they can't fully anesthetize because blood pressure is already too low-that helped.

Then MY doctor came in & asked how I was. Terrified was apparently a healthy answer. I appreciated my anxiety not being written off-so often it's seen as silly. Also, she had on bright orange shoes, which is the silly kind of detail that I notice that makes things like "getting four holes punched in your abdomen & your innards cleaned off" a bit less intimidating. Weird? Yep. Yep I am.

Then they gave me Versed in an injection & everything got all fuzzy-the first thing to go is always my ability to focus my eyes together. The next thing I knew I was waking up in a room with a LOT of medical people & a lot of groggy people and I felt naked. First conscious word: Naked. Second conscious word: thirsty. Third conscious word: blanket. I took a fuzzy (and frankly offensive, it's covered in puzzle pieces but was made with loving intent, and my cat loves it) blanket & they gave that to me. And then ice chips. They told me to go back to sleep, but it was too noisy & bright.

I only vaguely remember being wheeled back to the room I started in, but I ended up there & kept asking for water & if I should have my noon meds. They wanted me to have a few more ice chips first. So I did. And then I drank. And drank more. And took my meds. And drank more. They left some crackers there, so I ate them. Mmm, club crackers...this nurse was kinda...uh...spacey, or else I was being very confusing, because nothing I asked got an answer without being asked again.


They made sure I could pee & then I got to go home. I was really out of it physically-like it was taking my brain a few steps to connect with my body-so I kept my eyes closed the whole time in the car.

And then the cat cuddled with me, I slept, and that was really that.

Boring blog post, yeah? Less boring, I guess: they took out several endometriosis implants & one of my ovaries had almost no mobility because of scar tissue or something attaching it too tightly to the pelvic cavity, so they're testing the shit out of that shit. So, I am not a whiny baby-there was stuff in there that causes pain. And it's gone now. Bahahaha.

Crabbier Than Usual

This has very little to do with autism or advocacy at all, but the whole blogomania thing (and associated crabbiness) does have a reason.

It even has a reason beyond "people are shitheads, the patriarchy are shitheads, and the tragedy model of disability pisses me off!"

I was in a car accident Friday. It was low speed, no one is going to die, I was the only person hurt as far as I know.

BUT

I hurt like hell. I have no idea how I jacked up my back so much, but it hurts worse than a lot of gymnastics injuries I have had. Not being ready for the impact and jerking around probably is involved, I have no idea. Whatever.

Pain isn't my cup of tea. Vicodin tends to make me a bit cranky. Flexeril doesn't do wonders for my processing. And being bored off my ass because I can't do anything physical just makes all that worse. Oh, and being told that they're sure it's nothing because I can touch my toes? Yeah, not sure how to feel about that because I have Ehlers-Danlos Syndrome so of course I can touch my damn toes! and it's hurt since Friday and hurts worse and I'm a whiney baby. And I'm not even going there with the ER report, oh god.

But--we can expect more wangsty posts at least?

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!

You didn't win. I just gave up.

A big part of my life is dedicated to advocating for my own needs. Why? Because if I don't do it, no one else will. I have the strength of personality to face down asshattery again and again without getting too discouraged. Angry, yes, but I don't give up easily.

There comes a point, though, where I just shut down. I cannot have the same discussion in different ways again and again. Once you start looking for loopholes, start argument-from-toning (hint: I'm an adult. "That behavior in trying to get an immediate need met is inappropriate" is pretty much the most asshatty blame deflecting thing you can say. Ever. If you have ever said this to someone advocating for herself, climb a rope and let go over a pit of spikes. If you cannot yet climb a rope, I will teach you), start making excuse after excuse, I cannot continue dealing with you. If you staunchly refuse to listen to my well educated thoughts on a matter, then beating my head against the brick wall that is whatever topic is at hand isn't something I am willing or able to do.

You don't win if I'm not able to continue a discussion with you, though. Giving up on talking to you doesn't mean I gave up on the issue at hand. It means I am looking to route what I need around the false roadblock you set up. You don't think disability access is your problem? Sucks for you, since legally you are wrong and the court will cheerily tell you otherwise. You don't think that I know the first thing about my medical crap? I want a second opinion, from someone competent. I know you aren't competent because what you told me is the exact opposite of what the technical literature told me. Oh snap.

Once I give up on you, you are probably in for fury the likes of which hell hath not seen. I have other resources. Don't make me use them. Yes, I get overwhelmed, but I have that soul of steel that only lets me wallow in that for a few days if the issue is truly important to me. You only think you want me to give up on you.

What's a Rescue Medication?

I keep referencing rescue medications. Turns out not everyone knows what that is! Not everyone with epilepsy needs one, and there are rescue meds for other conditions-nitroglycerin for angina, for example.

For me, a rescue medication is something taken as needed to stop clusters of seizures. I try to take half a clonazepam during an aura since most of my seizures bring company.

That doesn't always prevent a seizure, but it seems to reduce severity and duration of what does happen. Having a rescue medication has made living a very active life easier because it can be the difference between a cluster of 3 and a cluster of 30 seizures.

Anticonvulsants & me

I've been on a shitton of antiepileptic drugs. People always ask me about them, their effects and side effects. So here we go, with the good, the bad, and the whatthefuck. These are in no particular order.

Tegretol: I really liked Tegretol. It was absolutely amazing for my seizures (both times I took it). Unfortunately, it ate my blood cells for breakfast (twice). Seizure free, alas, I felt like crap.

Trileptal: I did not so much like Trileptal either time I was on it. Both times I took it, I was extremely uncoordinated and my brain didn't work. It made me sleepy-for me, a plus-but it didn't actually work for the seizures. As in I started having frequent absences and had a few drop seizures. It kind of sucked.

Topamax: I took Topamax from 2003 until 2010. I really did well on it for the most part, though my effective dose went up and down depending on what else I was taking at the time. I did get a bit of cognitive dulling, but it wasn't bad and it did teach me left from right. I got kidney stones as well, and did have a few borderline tests of kidney function, which is why I stopped taking it.

Zonegran: I took this twice too. It worked, ish, and made me sleepy at first but that always wears off quickly. The first time I got a bit of a facial rash, but nothing severe, and the second time it seemed to aggravate my kidney stones. It made me slightly stupid but nothing I couldn't have lived with had it worked.

Lamictal: Yet another twice tried, twice failed. It worked more or less, and even eliminated an ongoing headache. I really wish that I could take Lamictal. Alas, I got the rash. Twice. The first time it was bazingly obvious; the second we thought it was recurrent sinus infections until I sneezed out my sinus lining. It was so cool. Disgusting, but amazing.

Keppra: I love Keppra. A lot. It more or less works for me. It makes me happier. It made me less dumb. I started taking it right after a significant car accident. Significant is a word which here means "I forgot how numbers work". Within 6 months my math and language skills were back.

Neurontin: I took Neurontin for a few years. When I first started it, I forgot how to get from point A to point B. After a few months I acclimated, which is why I was on it for years. It made me sleepy every time I changed my dose, which was a plus, but it stopped working for my seizures and I felt very overmedicated at the time.

Gabatril: This was a short lived experiment. In theory it would replace Neurontin, but it didn't. I felt extremely spaced out and wasn't particularly coordinated. Since it didn't seem to work, either, we stopped it at about 3 weeks.

Clonazepam: For a long time this was just an emergency medication. I had a phenomenal amount of emergencies, so we added it to my daily regimen for 6 months or so. Going off wasn't hard, and I did not feel as drugged as one would expect. If there were side effects, I did not notice them.

Lorazepam: This was my emergency medication while I was on clonazepam daily. It worked pretty quickly for me and was somewhat sedating. If there were side effects other than sleepiness, I am unaware.

Diazepam: I took this as an emergency medication at one point also. Since it has a long half life, it was ideal for use during hormone swings that bring on seizures. It's not particularly sedating for me.

Temazepam: Yet another rescue medication. My theory during the time I took it was that it knocked me out and gave me a hangover so that I didn't notice seizure activity. Nothing in my life has ever made me sleepier.

Vimpat: This is the most recent addition to the list. I switched to Vimpat from Topamax in mid-2010. I got some headaches and experienced both dizziness and vertigo, but so far it is absolutely worth it. I have had 2 six-week seizure free spells since the switch; that is a really big deal for me. I've had some anxiety that may or may not be related to the medication as well, but the trade off is something I am willing to live with.