Sunday, December 25, 2011

The Happy Family Meme, Holidays, & Why I Hate December.

I'm pretty convinced the people who push all of these "-insert holiday here- is for families!" ideas have never read the news. Ever.

Newsflash for you people: Some people's families SUCK.

So you make all these days (mostly Christian-chosen holidays, which is a whole other issue) days that what you can do is be with those abusive assholes who you haven't seen since they told you to get a real job or die on the street when you were a teenager, or you can be alone hearing all about how Xmas is all wonderful and yay family who love you and are awesome no matter what.

And to that I say, fuck you.

There are all sorts of myths already about people who have shit-awful families. Didn't you know? It's my fault my parents are abusive. Obviously people from dysfunctional families are unable to love or care or whatever; never trust someone who has no contact with their family because no reason is good enough to justify that because family is family. Someone who has no contact with their family, even if their family is abusive and toxic, is all sorts of indescribable awful. That is the meme. We all are just spiteful and horrible because, don't'cha know, families always are there for each other and love each other. No exceptions.

And to that I say, go fuck yourself. If you want them so badly, you take them.

Then you throw holidays in there. Go spend time with your family, you say. All families love each other, holidays are for family, forgive/forget, I slap your face off and you're still going.

Because our culture refuses to admit that some people are related to shitstains, a holiday is a day where your only choices are:
a) go be abused
b) sit at home hearing how you should be with your family.

Because I don't feel bad enough already about being told I'm subhuman for avoiding those people, I also need to have no options for doing stuff today. It's like society at large is trying to bore & shame me into forgetting that I have parentally-induced dents in my skull.

And I know I am not the only person in this position. It isn't a moral failure to hate your family or hate holidays. You can't really have one without the other very easily, and if you really think it's a moral failure to not like having parentally induced dents in my skull & other PTSDy memories, go fuck yourself.


Thursday, December 22, 2011

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.

Tuesday, December 6, 2011

Why I am So Hard On Allies

I admit it. I'm hard on allies. I'm not apologetic about it.

When you say you want to support me-be my ally-you have said that you want to be part of a group that I want to trust. You're saying you wish to be part of a group that is working for things I devote much time and energy to. You are saying you want to be on my side.

And that's great.

But I have high expectations for teammates. Really high. If you are on my team, I'm holding you to nearly the standard I hold myself to, and my goal is strong loyalty. My goal is to get the job done. Not a little bit of the job-all of it. If there is something left to fix, I want to fix it, and I operate under the general assumption that other people see advocacy the same way.

High expectations and high standards are a sign that I think you're capable of earning that trust I mentioned higher up. I don't trust easily. Saying you're an ally doesn't make you one. But putting in the work-which is tedious and frustrating, believe me I know-that can make you an ally. But the allies who I trust? That trust is a sign that I think very highly of them, and I expect the world from people I think so well of. For what it's worth, I expect the world from myself too. I know it's not an easy standard to meet, but it's doable. Ish.

So if you're an ally, and you think I'm harder on you than you deserve (and you're actually doing stuff, not just spreading puzzle piece crap-that so doesn't make you an ally), consider this: it might be a compliment. I only expect the world from people who I think can deliver.