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Archive for November, 2010

So, yesterday everyone’s favorite goddess of entropy turned 27.  (Hey, I go by Kali, remember?)

It’s funny, 27 feels a lot older than 26 did.  I’m not entirely sure why.  Maybe it’s partly because I’ve been working as a clinical legal intern for the past several months, which is very much like the sort of work a new lawyer does in a big organization.  Maybe it’s because a decade ago I celebrated the first birthday after I moved out of my parents’ house for college.  Maybe it’s because I’m now three times the age where I first have a long series of clear memories (I don’t remember much from when I was a little kid – a couple of quick little flashes, but not a whole lot).

At any rate, my birthday weekend certainly could have gone better.  I dislocated my left shoulder fully several weeks ago, and I’ve been having more severe trouble with my back ever since.  Over the weekend, it got so bad that it caused a really horrific migraine on Thursday, bad enough that I threw up and maxed out my doses of all of my meds.  I spent all day Friday in bed, and was so badly off that I didn’t even put Hudson’s bowl down on the floor for him, I had to have the boyfriend do it.  I spent the first two-thirds of Saturday in bed, but eventually made it up for a few hours at the end of the day.  Oh, and the only reason I made it up was a combination of two long hot baths (one Fri one Sat) and slow, gentle stretching while in bed.  It was certainly a lousy couple of days.  There may or may not have been a minor brush with something flu-like involved; my vote is that I was sick.  I was more-or-less back to the pre-Thanksgiving state by Sunday, my actual birthday.  Today, I got to see my PT with the magic hands, Vince.  I’m sore and achey from being worked on, but I know tomorrow I will feel better than today.  Usually it’s more immediate, but hey, I can deal.

And for my birthday, Hudson gave himself ear infections *rolls her eyes* so the other trip out today was to the vet.

Having said that, it wasn’t a bad birthday, really.  The boyfriend and I sat and watched back-episodes of Supernatural (we’re partway through season 4, no spoilers!) and generally had a pretty relaxed day.  My sister gave me something thoughtful but not presently very useful (cooking gadgetry, when I rarely cook anymore).  My parents gave me some $200 worth of limited edition perfumes that I’d been positively lusting after and crushed at the thought that I wasn’t going to get them.  The boyfriend gave me a gift certificate to Old Navy, where I get most of my work clothes and a good deal of my non-work clothes, as they magically have clothing that FITS! this short, curvy, busty girl.  I’ve already transformed a bit less than half of it into a sweater that I’d been wanting for weeks but couldn’t justify the price of (on a nice Thanksgiving sale, no less).

This coming week is a bit exciting, a bit scary, and a bit sad.  Exciting and scary both come in over the fact that I’m getting my new leg braces.  I’m excited because I’ve been stuck not-walking for the past 5 months and I’m sick of it.  I’m a bit scared because these braces are going to go from my feet to the middle of my thighs, which is quite a big piece of machinery.  These braces are being designed to deal with the problems of the former braces – heat, cuts from the edge of the braces, difficulty in getting into them, and discomfort wearing them.  They’re 100% custom and will have padding and rolled edges to make them easier on my body.  I also decided, what the hell, if people are going to stare at my braces, I may as well give them a reason to – so the new braces are going to be swirly blue instead of the basic black of the old ones.  Also scary is talking to my doctors (my GP and my pain specialist) about starting to investigate what we think may be CRPS or RSD in my feet and lower legs.  Yet another piece of scary is my schedule for next year – registration is due on the 2nd, and I’m still trying to figure out if I can take the clinical I want and if I can find someone to supervise some ‘guided research’.  Sad is finishing up my internship at the LGBT center.  I’ll be keeping on a couple of my clients, because they’re cases I really feel involved in, but the rest I’ll be writing transfer memos for to inform the next intern what’s going on.

The academic stuff is particularly stressful.  The clinical issue is…well, it’s upsetting.  The professor for that clinic is making noises about not being able to accomodate me, and I don’t know how well I’ll be able to fight that.  See, he’s saying that if I can’t make the hours he’s dictating, he’s worried that I ‘won’t get the full experience of the clinical’.  And if that’s true, they can say that they are unable to accomodate me and it’s legal.  I thought we had come to an agreement weeks ago, and I spoke to the clinical director saying as much, only to have him ripost that we hadn’t had an agreement and there are lots of problems still to deal with.  I need to get an accomodation letter from my GP, but it’s been hard to get in to see him.  I’m finally seeing him tomorrow.  And the guided research…whoo.  One of my co-authors on the article is making noises that we really need to get to work on this article, but there’s no way I’ll have time unless I am getting academic credit for the research and writing, which means I need to find someone to supervise my research and so far, I can’t hook anyone.  Time is coming down to the wire, and my anxiety is ratcheting up.

Early December is my least favorite time of year.  It’s getting miserable and cold (which makes me ache so much), school stress is at fever-pitch, holiday stress is starting up, and I have a tendancy of injuring myself or getting sick right about this time of year almost every year.  Going to visit people for the holidays tends to stress me out – my extended family and my sister stress me out, and I always feel like the boyfriend’s parents don’t quite approve of my needs to rest, sleep, avoid the cold, and avoid their rather abrupt driving.  Not to mention they’re Christian and the boyfriend and I are living together but aren’t planning to get hitched for several years yet.

This time of year makes me long for early fall, when the heat of summer has faded and the nights have just a hint of crispness to them.  When the sun still glows warm in the afternoon but doesn’t melt me.  When the last corn of the season is still in the farmer’s markets and the first apples are starting to appear.  Oh how I love early fall.  Winter feels all the more disappointing because of the length of stunningly georgous weather we had this fall.  We’ve only just pulled air conditioners out of windows this past week because it wasn’t cold enough for them to be a problem.  But now…now the cold seeps through the windows so badly that we’ll need to get the plastic window cover kits to create insulation so that the livingroom isn’t half-frozen by the big front windows.  As for the kitchen, well, there’s no helping it because the door isn’t hung straight so it’s got gaps everywhere and besides that the kitchen was a late addition without much insulation.  The bathroom is just as bad as the kitchen – to take a hot bath right now, I have to run the bath far too hot 20 minutes before I want to get in so that it will warm up the evil cast iron bathtub.  I hate that bathtub.  It makes me long for the fiberglass constructions I’m used to that warm up in just a minute or two.

Ah well.  At least no snow has stuck yet.  Adieu to the unseasonably fair weather that took us through most of November, and Salut to the miserable cold come creeping in.

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My LGBT organization that I work for is going to be the one of the beneficiaries of an event put on by the local fetish community.  Now, we’re a sex-positive organization, and I’m a sex-positive person, so on the surface, I think it’s a great idea.  My org will be there doing HIV testing, and my understanding is that the event brings down $15-20k every year for its beneficiaries.  Right now, we’re in a funding bind because our state is cutting our funding, so every penny coming in counts.

My first thought was that it sounded like a cool event.  Then I saw the postcards advertising the event.  The entertainment for the night is ‘Medical Mayhem’ and will include a “fetish Asylum”.  The only person pictured on the card is a young woman wearing what appears to be a straight jacket.

Oh. My. God.

As a member of the disability community and as a person of Jewish descent from Lithuania and Ukraine*, I can’t help but compare this to fetishizing the Holocaust.  Asylums were places where my people were abused horrifically.  If you don’t believe me, look up the Rivera report on Willowbrook or the documentary filmed at Pennhurst.  You will see children tied down to beds, trapped in cages, in their own filth – people who have had their motion severely restricted for so long that they look like Holocaust survivors with their lack of flesh, but pasty from being indoors all the time.

Even today, we have trouble with institutions for mental illness.  Recently, there have been pushes to make co-ed floors, because men do better in co-ed floors.  What they are finding is that women are victimized in these co-ed floors, sometimes by the men, sometimes by their carers. 

We know that people in institutions are often physically, mentally, and sexually abused.  It’s a systemic problem, when you put people in charge of those who are trapped and de-valued by society.  That’s not to say that all people who work in institutions are monsters – there are people there who care deeply about their charges and do their jobs to the best of their ability.  But there are also women like the one in my grandmother’s care home – she would pretend, with these elderly people with dementia and other mental problems,  that she was going to hit them in the face, and stop an inch or two from actually making contact.  We reported her several times, and yet she was still there, still acting that way.

We know that women who are severely incapacitated are abused sexually in their placements.  A 1994 article noted that some 40% of developmentally disabled women referred to a particular medical clinic showed signs of sexual assault/sexual abuse.**

That’s not to say that institutions don’t help people.  On the whole, the nursing home my grandmother was in was a good place.  I know people who’ve chosen to go inpatient for mental health reasons and have probably had their lives saved by institutions.

But fetishizing places that for decades were the warehouses to hide people with disabilities, where terrible abuses happened, where we left people to rot, where we paid less to take care of human beings than we gave the local zoo to take care of animals?***  Hell, even if you were just fetishizing modern institutions, you’re talking about places we KNOW women are victimized at higher rates than ‘outside’.

I’m pretty completely disgusted.

I spoke to our head of fundraising, and after a long talk, he finally got why it was offensive.  I’ll admit, the holocaust comparison didn’t come to my head immediately, so I compared it to fetishizing slavery, which was a faux pas.  But damn it, he didn’t get why this was so offensive and thought that it was that I was hurt – no, no, it’s that they are making light of something that has hurt my people.  Not just me, but decades worth of people like me – people with disabilities, people with mental illness.  Any time you fetishize medical scenarios it’s a bit problematic because of how people with disabilities are treated by the medical world, but when you start dealing with institutions…well, that’s when things get really ugly, really offensive, really horrific.

I’m mad that this showed up in my inbox.  I’m mad that an organization I believe in and work for is promoting this event and benefiting from it.  I’m mad that this event is happening at all.

But most of all, I’m mad that someone is making light of a place where people were and continue to be abused.

* As I understand it, we personally lost family.  I do not know what happened to our family in the Ukraine, but in Lithuania, family stories have it that everyone who did not immigrate to the US before the start of WWII was killed.  That is to say, of my particular branch of the family whose name I bear, only the descendants of my great-great-grandparents survived.

** Keels et all, Family views on sterilization for their mentally retarded children, Journal of Reproductive Medicine, 1994.

***From the 1968 report by Baldini about Pennhurst entitled ‘Suffer the little children’

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Obsessions and quirks

We all have our obsessions and quirks, but I think they’re a lot funnier when you’re talking about a service dog’s obsessions and quirks.

Hudson is obsessed with smelling my pants before I put them on, so much so that if he sees the boyfriend approaching with a pair of pants in his hand, he tries to get a whiff of them.  He has a lesser obsession with other articles of clothing like underwear and tops, where he likes smelling them but he doesn’t have the same level of NEED that he has with pants.

Hudson feels the need to look in the toilet every time he passes it.  You can imagine that this gets obnoxious when, for example, he’s just taken a drink and is still dripping from his moustache.

Speaking of which, if I pee, Hudson wants a drink.  If he pees, Hudson wants a drink.  Somehow peeing and drinking are linked in Hudson’s world.

Hudson likes taking over footspace, both mine and the boyfriend’s.  The housemate is spared because she sits on the other side of the coffee table from Hudson, the boyfriend, and I.  If he’s not taking over footspace, he likes lying down in the middle of walkways (yet doesn’t like being stepped over).

Hudson feels the need to sniff the fence to the right side of the backyard every time he goes out, but rarely has any interest in the left fence.

If I remove eye gunk, or loose fur from his face, Hudson wants to sniff it and more often than not tries to eat it.

Hudson likes to get in real close and get a whiff of my breath after I eat anything.

I hope you all got a good laugh at this, because I live with a 65 lb goofball! (well, and a big human one I call the boyfriend, too, but I’ll tell you about his quirks another time!)

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I mentioned a while ago that I tried to talk to my boss about her use of the word ‘crazy’.

Well, Wednesday I had a chance to talk to another intern who had been using the word ‘lame’ when she got upset.  I very much like this other intern, so I was afraid of having this talk.  It’s harder for me to approach people who I like about problematic language.  Especially since the conversation with my boss…didn’t go off as planned.

It couldn’t’ve gone better.  I phrased it simply.  “Lame refers to having an ‘abnormal’ gait.  Like me.”

She was shocked to realize how hurtful her language was, and promised in the future to try to remove it from her language.

I thanked her.  Because that response?  That’s the response of a true ally.  I don’t expect people to get it right every time, to get it right from the start.  But when a person is presented with a choice of respecting or ignoring the word of a person from the minority group, I think that’s when you find out who your real allies are.

Fellow intern, you can count yourself as my ally.  I sure do.

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(alternative title: In Which We Discover How Poorly Dysautonomia and Exhaustion Mix)

I have dysautonomia.  I probably specifically have POTS (postural orthostatic tachycardia syndrome).  I say probably because my GP diagnosed me with POTS, but my electrophysiologist (sub-specialty of cardiology) took away that diagnosis and gave me ‘some variety of autonomic dysfunction’ instead.  In layman’s terms, dysautonomia means that you have some variety of dysfunction of the autonomic nervous system.  Your autonomic nervous system regulates everything involuntary in your body – heartbeat, blood pressure, digestion, goosebumps, sweating, pupil dialation, and a great many other things.  My primary symptoms are dizziness, collapsing, fainting, random severe sweating, unstable body temperature, and possibly my GI issues.  When you’re having problems, it also affects your ability to think.

The thing about dysautonomia is that it’s affected by a LOT of things.  Chemicals like caffeine and alcohol.  The amount of food in your GI system (and where said food is).  Temperature.  Body position (that is, sitting, standing, lying down, bending over).  Emotional or physical stress.  Fatigue.

Oh yes, fatigue.

Thursday and Friday nights, I slept very poorly.  I was having dysautonomia symptoms – sweating heavily, one side of my body very hot, the other side very cold.  Friday night, the boyfriend and I didn’t manage to get my regularly scheduled evening medications into me, which typically means that I don’t get to sleep until much later than usual and sleep very poorly.  I’ve also been in a fair amount of pain ever since I partially dislocated my shoulder early in the week.  And I got either a mild case of food poisoning or I was exposed to something I’m allergic to, which meant I was still feeling ill Thursday night.

So come noon on Sunday, when I finally woke up, I wasn’t feeling all that great.  I just stayed curled up in bed and read for quite a while.  Eventually, though, I wanted to get up.  Among other things, I very badly wanted a shower and clean sheets on the bed, after all the sweating I’d done.

Easier said than done.  I think the only time in my entire life when I’ve been even nearly this dizzy was the worst concussion I’ve had.  Fortunately, I own a shower chair.  Unfortunately, I was having trouble even sitting!  The boyfriend had to move me from bed to bathroom with my arms around his neck and his arms around my waist, taking little baby steps.  I managed the shower by holding on to the back of the shower chair any time I had to lean or twist to get bits of me rinsed off properly.  Toweling off was downright silly, as the boyfriend had to hang on to me so I wouldn’t fall and I had to try to dry myself around him holding me and he tried to keep out of the way of me drying off.  While I was in the shower, the boyfriend kindly changed the sheets on the bed.

I had hoped to stay ‘up’ after the shower, but I was still so dizzy that it was not to be.

I went back to bed and curled up reading.  I eventually realized that I might be able to actually DO something about some of the symptoms.  I had the boyfriend bring me the med I take to raise my blood pressure, a cup of gatorade (which helps a lot, by raising the amount of salt and potassium, which increases fluid retention, which can help raise blood pressure), and a snack (because you can’t take the medication on an empty stomach).  We hoped it would be enough to counter the dizziness…

Yeah, not exactly.

With quite a bit of help, I managed to get downstairs.  I curled up with my book, and ended up progressively less upright on the couch, until I was completely slumped over sideways over the arm of the couch.  I knew I needed to eat, but the idea of food – especially food smells – was absolutely revolting.  The boyfriend warmed up some chicken noodle soup, which had the advantage of being both lighter and less odiferous than our originally planned dinner of steak.

It was around this point that I started getting punchy.  Things were enormously funny, especially the dysfunction of my body.  We had already decided that once I had some food in me, I should go back up to bed.  The hard part was getting me there.

First, the boyfriend had to get me off the couch.  I was less than helpful, as I felt all floppy and dizzy.  He hoisted me up, and then we walked to the foot of the stairs.  I say walked, but really it was baby-steps.  My arms around his neck, his arms around my waist, and little bitty steps to get across the room.

I ended up going up the stairs on all fours, because I couldn’t manage it standing.  A couple of times, my arms kind of went out from under me and I landed on my face and chest on the stairs, which cracked me up.  At the top of the stairs, the boyfriend had to once again hoist me to my feet, where I stood swaying and would have fallen if it weren’t for his grip on me.  More baby-steps to the bedroom, where I flopped on the bed and he undressed me to sleep.

Naturally, a minute or two after being undressed, I realized I needed to pee.  Now, before we got the new housemate, I likely would have just had him walk me there and back naked.  Instead, I pulled a wrap around me and we went back down the hallway to the bathroom.  Going down the narrow hallway, I can hold on to the railing around the stairs and the wall and usually keep my balance that way, even if I’m terribly busy.  Not so Sunday night.  My arm on the wall side kind of folded up, so I bounced off the wall and ended up giggling quite badly.  We ended up going back to baby-steps to get down the hallway.

The boyfriend had to pull me up to get me off the toilet after I’d gone to the bathroom.  Baby-steps back to the bedroom, where I tried to crawl onto the bed and my arms went out from under me so I landed on my face and I started with the giggles again.  After a fair amount of flailing and laughing, I finally managed to get myself situated on the bed.

In retrospect, it’s a little scary to be so completely out of control of your body and your mind.  As it’s part of one of my conditions, I suppose I ought to get used to it.  But believe me, that won’t make me like it!

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