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Posts Tagged ‘mental illness’

Thank you.

Alan,

I know you will probably never see this blog, but I wanted to put this out here.

This afternoon in the ER, when they wanted to put in an IV to draw blood, I got hysterical.  My last trip to the ER involved what was even for me a rough time getting an IV in.  I was borderline phobic before, and have crossed into the real thing once again, I think.  I was when I was younger, and being re-traumatized didn’t help.

Without meds, you talked me down and distracted me, and hit a vein on the first try with minimal pain.  Thank you for NOT treating me as if my reaction was unreasonable or inconvenient.  That basic kindness and decency is so deeply helpful in situations like this.  It seems to be much the character of the ER you work in, but this was an unusually strong exemplar of just how awesome you guys are at this ER.  There’s a reason we don’t like to go anywhere else – I get treated compassionately, kindly, and thoughtfully here.  There are never issues with my service dog, and people actually care if I am okay.  ERs like yours seem to be a sadly rare phenomenon.  I can’t tell you how often I have been treated as if I was nothing more than a difficulty in other places.

So thank you.  Thank you for caring enough to not want me falling apart and sobbing.  Thank you for making this a non-traumatic experience.  But most of all, thank you for being patient and kind.

 

(P.S. – if you’re wondering about why I ended up in the ER, it’s kind of an odd story.  You see, this afternoon, right after I posted my most recent post before this one, something weird happened.  I had had a headache since last night which was neither a migraine nor a tension headache, as treatments that work on those had no effect on it.  I turned my head to the right, heard and felt a crack in my neck, felt shooting pain going to my left armpit and down the left side of the spine, and passed out.  I came to less than a minute later, dizzy and nauseated.  A little while later, I got to my phone and called my doctor’s office, where they advised me to go to the ER.  I threw up shortly after that, called myself a cab, and decamped off to the ER.  They did a little bit of testing (ekg and bloodwork), poked me a bit, and decided to send me home.  Apparently, I’m not urgently in trouble, but they do want me back in with my GP to try to get to the bottom of this.  Precisely what I needed with exams starting in two weeks, ah well.  This will certainly be…entertaining.

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Anyone who has any degree of PTSD will tell you this: you tell people you have it and at least half of the time they don’t take you seriously.  The same goes for phobias.

When I was 17, I got a twist in my intestines.  It sent me into a high fever (around 105), dehydrated me, and generally made me very ill.  I was somewhat delerious.  When they sent me to the ER, the ER nurse couldn’t get a line in.  He blew the vein on the back of my left hand so badly that the entire back of my hand was bruised, and the bruising showed through to my palm.  Then he tried to get one in my right thumb, and couldn’t find it, so he was sawing around and ripping up the back of my thumb trying to find it.  He gave up and when someone else came to try to put an IV in, I was curled up on the corner of the gurney screaming “no more”, with my fist cocked back to hit someone if they tried.  (They did a lot of things that night that honestly register as torturing me, like putting in a catheter and filling my bladder painfully, then doing an ultrasound on my very tender belly.)

Thursday night, we went into the ER because I had horrific abdominal pain.  As usual, they had trouble getting an IV into me, so they ended up putting the smaller size one into my hands after 3 failed attempts to put bigger ones in other places.

They wanted to do a CT of my abdomen with contrast, which requires the regular size IV because they flood the contrast into your body pretty fast.  After another several failed attempts (we were up to 7 at this point).  I told them that I was going to lose my shit and start freaking out if they tried to stick me again – I had done as much being poked as I was capable of without freaking out.  I asked them to sedate me before they tried again.

They said oh, we’ll do the next one guided by ultrasound.  It will be fast and easy.

I did, indeed, lose it.  Screaming and sobbing and shaking uncontrollably while they keep poking me and trying to get the IV in.  The guy doing the IV kept asking me if it hurt or if I was scared, and the answer was both, damn it!  I was freaking out badly enough that it was making everything hurt worse.

Eventually they did sedate me, and once it kicked in, we were able to get an IV in and I was able to stop freaking out so badly.

What I want to know is this:  why the hell couldn’t we have STARTED with that before the ultrasound-guided IV?  I told them I needed it.  If they had sedated me, it would have been a nothing-doing procedure that wouldn’t have triggered me.

Instead, I’ve now been triggered badly enough that they’re going to have to sedate me to get a FIRST stab at me next time.  It took me a decade to get to the point where I could accept IVs without getting worked up, and now…now I feel like I’m back to square one.

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One of the frustrating things about having a chronic illness is that you often have to work on its time.  You can have all kinds of plans, only to have your illness decide it feels like kicking your butt worse than normal.  Or maybe you plan for things to be bad, only to have a good day.  Maybe you just THINK it’s a good day, so you over-extend yourself until you’re near collapsing far from home.  Or maybe you just have a bipolar meltdown and are having trouble getting out of bed because your sense of impending doom is so damn intense.

I’ve been dealing with a lot of stuff healthwise lately.  The prescription they put me on for the pain and swelling in my joints seems to disagree violently with my GI system.  My pain specialist told me to go off it for a week, which helped enormously with my GI but wrought havoc on my joints.  They’re now almost as puffy as they were when I first went to the rheumatologist.

It’s frustrating, because I’ve made commitments.  I’m working on a research project that is intended to become an article written with a friend.  It’s a big deal – law students rarely get journal articles published, so if I do, it’s a major feather in my cap.  It’s also on a subject I care a great deal about: privacy and the internet.  You see, I think we should be able to talk freely and read freely, without someone able to track every website I visit and every comment I make easily.  I think it’s a good thing if it’s hard for the government to just jump in.  If it’s important, the government has the resources to break most privacy systems that exist, they just want to have things set up so that it’s easier to do.  And if you make something easy to break, the government is not likely to be the only entity to take advantage of that.

Anyhow, I’m getting sidetracked.  So I have this project that is important to me both career-wise and in principle.  I have deadlines and people relying on me to do work, and frankly sometimes I can’t.  Sometimes my body is so broken that doing anything but lying in bed reading a novel I’ve already read a dozen times is impossible.  When things are bad, even a new novel – no matter how straightforward it is – is more than I can wrap my brain around.

When you work on chronic illness time, you have to have some give in your schedule.  Maybe you’re lucky and have a flex-time schedule that allows you to get your work done whenever you are in the condition to do it, whether it’s 9 AM or 2 PM or midnight.  Maybe you work few enough hours that you can rest enough between them to keep going.  All told, though, it’s hard.  It’s hard and it’s frustrating, and it makes you look like an unreliable flake to others.  It makes you feel like an unreliable flake.

For me, that inability to know how well I can keep my commitments is the hardest part.  It makes me question whether it’s worth it to finish law school, because I don’t know if anyone will be willing to hire me afterwards, or if I’ll be able to work for myself.  It is the one hint of bitterness for me in my fiance’s success at getting his job – the knowledge that such a job may never exist for me.  And it is only a hint; the vast majority of me is deeply happy for him.  And, er, also pleased that there will be money to buy shiny things, like fancy things to put in my hair and nice fiber for my spinning wheel and a silk robe to wrap myself in.  Okay, so I’m a hedonist and a glutton, but these are the small things that make me happy.  (If you’re curious about the nice hairthings, I’m going to be buying a hair fork from these guys – http://www.etsy.com/shop/grahtoestudio?ref=fp_ph_2&src=prvshp.  I am thinking about getting something custom – they had this lovely fork with a crescent moon at the top, and I think I want one of those in maple, which is pale and lovely.  Also, if you’re thinking about buying something from them, please tell me, because they have a referral program whereby I can get credit towards pretties.)

Ye gods this is a wandering entry.  I should know better than to write tired, which I am doing.  My block had this godawful block party today that involved a DJ playing music at rock-concert volume.  In the house with the air conditioner running and good earplugs in, I could still make out every word of every song.  It has left me with a bit of a headache, I’ll admit.  Also, I just went back on the medication I mentioned earlier, so it hasn’t had time to do me much good, which means that everything HURTS.

So this is what working on Chronic Illness time looks like: this is the time when your chronic illness makes it hard for you to write coherently and cohesively.  I know what I’ve written can be read, and the meaning is reasonably clear, but it rambles and forks like a bramblebush.  And why?  Because it’s hard to edit when you’re like this, and it’s harder still to make yourself stay on topic.  Obviously my mind in this state is pretty useless for researching for an article, much less trying to write anything!

So goodnight, everyone.  Hopefully, tomorrow will be a more brainful day.  Also, look for the announcement for the next Assistance Dog Blog Carnival here sometime before Friday.

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When you have disabilities and illnesses, you inevitably get people asking how you live with them.  The short, pat answer is one day at a time, and there is some truth to that.  The longer answer is what I’d like to address today.

For me, at least, each piece is different.  Some you just make little adjustments for; some re-work your world and change everything.  Some you hardly ever think about, while others require your attention on a daily basis.

Now, I’ll be frank with you, the list of things that don’t fit the norm with my body is pretty extensive.  I don’t have a single system in my whole body that is unaffected.  I’m not going to go through all of them because it would take forever.

So let’s start with a relatively common one: asthma.  I developed asthma when I was 12.  At first, it was relatively mild, so it was just annoying.  Sure, I carried an inhaler at all times, but I really only needed it if I was running or swimming hard.  When I was 15, it took a sudden turn for the worse.  That was when it became terrifying.  I remember the first attack that sent me to the hospital.  I remember my mother calling the nurse’s line at our health insurance to find out what we could do.  I remember them setting me up so I was laying back at a 45 degree angle on the couch and having a humidifier blowing moisture into my face, which only made it worse.  I remember getting  woozy because I couldn’t breathe.  I remember my chest hurting.  I remember the tense ride to the emergency room a few blocks from my parents’ house, where they gave me a breathing treatment.  There are few things more frightening than the first time you are almost completely unable to breathe.  It hits you at a visceral level, it makes you…it makes you fear death is stalking you.  I also remember my first coughing-type asthma attack, where with each cough my lungs tightened further.  I remember the asthma attack at the Girl Scout camp up in the mountains, where I had to hang on for 30 minutes as they drove to the nearest hospital, desperately hitting on my inhaler and trying not to panic because panic only makes the attack worse.  Of all my conditions, asthma may be the scariest, because when it hits you are completely at its mercy until you can get a breathing treatment.  You live with it by always being prepared – taking your inhaler with you everywhere, and if you have a preventative, taking it every day.  You live with it by knowing where the nearest emergency room is.  You live with it by having people in your life around you who know you have the condition and who help you when it hits.  You learn breath control and breathing techniques that help you to partially control your asthma attack with your mind.  And you live with the fear, this little dragon coiled ’round your heart, ready to squeeze when you feel a little wheeze in your breath or something makes you cough, that tension when you see someone smoking and know that might be enough to set you off.  I mean, you get used to it, because it’s always there.  It gets less scary, and the attacks are no longer terrifying but more a nuisance.  You don’t think ‘Oh god, I can’t breathe, I can’t breathe!’ on your thirtieth severe attack, you think ‘Damn it, off to the ER again, I hate this shit!’

Asthma is one of the hard ones because you know that it can kill you and fast.  Hell, it can easily kill you, if you don’t manage it aggressively.  When things are good for a long time, your vigilance slackens a little, until that time you get a little wheezy and realize you don’t have your inhaler.  Hopefully, it’s a small attack that reminds you to keep your inhaler around; my pediatric asthma specialist told me a story about a friend of his who died because she didn’t have her inhaler on her person and she didn’t get to the ER fast enough.

It’s a strange balance, between the nuisance and the fear.  Nowadays, I only get scared by my coughing-type attacks, partly because those tend to be far more severe.  Even those, it’s just a case of getting headed towards an ER as soon as the coughing starts, because I can’t stop them without a breathing treatment.  The other attacks, I just get annoyed.  I know the likeliest result is that I’m going to be stuck focusing on my breathing for the next half-hour, and not being able to do anything else.

Let’s go with the big one – Ehlers Danlos Syndrome.  To be perfectly honest with you, it varies wildly how this one hits you.  I have a moderate case of EDS, so I can’t really describe what it’s like for people with more severe cases.  I was born with naturally very tight joints, so it took longer for EDS to really damage my joints.

You don’t think much of it when you’re young and relatively healthy, and thus undiagnosed.  It doesn’t affect you much then.  Sure, you get injured more often than other people, and sometimes in ridiculous ways, but it’s not something that really sticks out all that much.  People just think you’re a clutz, and for that matter, you probably do too.  I sure did!  It was strange, because when I was focused on what I was doing, I had unusual precision in moving, but as soon as I wasn’t in that extremely tight focus, I started banging into tables and such.

EDS is mostly a nuisance.  Dozens of braces I’m supposed to be wearing at any given time (finger, wrist, elbow, knee-and-ankle-and-foot).  I hate the way it makes me stand out – there isn’t really a way to hide braces that run from the middle of your thigh all the way down to the sole of your foot.  Nor can you hide braces on your fingers, unless you wear gloves, which would make you stand out even more.  (I am thankful that I have the relatively pretty finger braces – I know some people are stuck with ‘fleshtone’ plastic, while I wear much more slender bands of silver.)  I hate that I can’t carry my own groceries.  If I go grocery shopping, I have to get someone to help me out to my car and have someone at home to lug them in.  I can’t even pick up a gallon of milk without hurting myself.

I hate that my hips and shoulders sublux at the slightest provocation, and that we haven’t been able to effectively brace them.  I hate the pain that comes from all these injuries that have happened over and over and over.  I sometimes feel defective.  I often feel broken, hence the title of my blog.  Certainly dysfunctional!  After all, I can’t function in the ways I used to.  I don’t usually compare myself to normal, but I do compare myself to younger Kali.  The Kali who danced 12 hours a week.  The Kali who went to grad school and carried an overload on classes.  The Kali who liked strength training at the gym.  Even younger, the Kali who loved to play soccer.  The Kali who drove an hour and a half to go shooting (archery) twice a month with her friend, and shot for hours.  The Kali who could hand sew like lightening.  The Kali who wore high heels.  Kali the swordfighter and fencer.  I miss being that Kali.

Some of living with EDS is embarassing.  My bladder leaks, so I have to wear pads all the time.  It’s frustrating – it isn’t the typical kind of leak people have, where a few drops escape when they laugh or sneeze.  That kind, you can do exercises to strengthen the muscles.  Mine just seems to be this light, constant dribble.  When I have to use the bathroom, it usually hits suddenly with a great deal of urgency, which means I have to abruptly break off conversations to run to the bathroom.  It’s also embarassing to be a twenty-something who has to ask people to carry her groceries to her car and ask people to give up seats on public transportation and use a scooter and park in the disabled spaces.  I’m mostly okay with it, it just twinges when people look at me like there is something wrong with me for needing assistance.  It embarasses me and it makes me mad, because what the hell do they know?  Who are they to assume that everyone who looks ‘normal’ doesn’t have some kind of disability?  Who are they to judge me?  If my doctor is willing to sign off on disabled plates and placard, who are they to think I don’t need it?

Onward, next disability: POTS (Postural Orthostatic Tachycardia Syndrome).  This one has been extremely hard for me, in part because it kind of comes and goes.  There’s a baseline that’s always there, that makes me extremely sensitive to temperature and even mild dehydration.  It’s annoying, especially when I go somewhere that doesn’t allow me to bring in water and I have to pay a fortune for drinks.  I often get a bit light-headed and dizzy when I stand up, and I have to hold onto something until it passes.  I suppose it’s a little embarassing, especially when people freak out because I abruptly sit down in the middle of the office to avoid falling.  Mostly, in that stage, it’s managable, as long as I can avoid heat and keep fluids in me.  When it gets too hot, or I get too dehydrated, though, it’s…well.  It’s unpleasant.  One of the first things to go is my ability to think coherently.  By the time it physically shows that I’m not okay – when I turn scarlet and collapse – I often can’t even explain what’s wrong to people around me.  “I have POTS” doesn’t mean anything to most people, and it’s about the limit of my explaining.  I can sometimes manage to tell people that I’m too hot, or that I need water, but not always.  That’s the scary part of this condition – I can’t really take care of myself when it causes problems.

But then there are the flares – in the flares, I can’t sit up without medication, because it makes me so dizzy, and I get headaches.  When I’m in a flare and it’s bad, I can’t walk without someone holding onto me, supporting some of my weight and keeping me from falling.  I get stuck in bed because sitting up is impossible.  I fall asleep.  I can’t remember anything, and get nonsensical.  Part of what has made this post take so long was the tail-end of a POTS flare.

And that’s not all the symptoms that come with POTS.  I get random episodes of tachycardia, where my heart just starts RACING, racing so hard I stagger and lean into a wall or fall.  I get occasional extra venticular beats, which feel like being kicked in the chest.

POTS is, to me, one of the hardest to live with.  It’s not predictable, and I have only so much control over it.  It traps me in the house when it’s hot, and stops me from being able to tolerate much less enjoy what was once my favorite season: summer.  I miss the days when the glowing warmth of the summer sun was pleasurable, was an excuse to break out little strappy summer dresses that made the boys stare.

Next up, migraines.  Migraines are a royal pain, and somewhat dangerous.  They creep on, slowly increasing pain until that’s all there is.  All my senses become jagged spikes of pain, and I need to close myself off to as many as possible – I need to lay down on smooth sheets and a soft bed, in the dark, and quiet.  I usually end up putting on a blindfold in addition to being in a dark room, because the dark has to be absolute.  I turn on a fan to provide a constant noise that smoothes over the serrated teeth of other noises.  I’m nauseated, and unfortunately the migraine medication is a nose spray.  Postnasal drip means it ends up at the back of my mouth, and it is incredibly, horribly foul tasting.  Not a good combination with the nausea (and dizziness) that are already swelling up.  Sometimes I throw up, especially with the more painful ones.

The complex migraines are even worse.  The pain is indescribable, and is bad enough to make me vomit over and over again.  I hurt so much I want to whimper and sob, but the sound and motion of those make the pain even worse.  Sometimes it gets so bad that I can’t stop myself, even though I know it’s only making things worse.  Lights blur into giant stars of blinding light, like a sunset on a smeared windshield.  Sometimes my hands twitch.  I lose spots in my vision sometimes.  This is when the migraine gets dangerous – I can’t transport myself, by driving or by public transit.  I often end up in the ER because I can’t stop the pain with the migraine medications I have and I need IV pain medications.  For those of you who know your opioids, morphine usually isn’t strong enough; I usually need dilaudid if it’s one of these vicious beasts.  For those of you who don’t know them, I need the STRONG stuff.  The stuff they normally give you when you come in in extreme pain?  I sometimes don’t even feel it.

With migraines, you live knowing that you carry around this mostly quiescent beast that will occasionally turn and rip into you.  If you’re lucky, you have triggers you can avoid, foods or smells or lighting effects that you can avoid and prevent the migraines.  My main trigger at this point is tension in my neck and shoulders, which doesn’t sound all that bad, but I’ve been in 6 car accidents, partially torn a muscle that connects the shoulder to the neck, and have dislocated both shoulders frequently.  I have chronic problems with the tension in all of the muscles in my back, neck, and shoulders.  Sitting in a less-than-comfortable chair for an hour can trigger a migraine if I don’t keep shifting and stretching.

GERD + IBS.  Ooh how I hate these.  GERD is gastro-esophogeal reflux disorder, which basically means that there isn’t as good a seal at the top of my stomach as there should be.  I take an acid-blocker to help with this, but it’s not enough on its own.  I have to mind what I eat, and I’ve had to eliminate caffeine except for chocolate (which I couldn’t bear to get rid of).  If I have a greasy meal, I have to be good for the next day and a half at least.  I can’t manage really spicy meals anymore, which is a shame because I love me some spices.  And when I say spicey, I don’t just mean heat – I also mean pepper and cinnamon and whatnot, because they’re hard on the GI system.  The other issue with the acid-blockers is that I have an astonishing ability to acclimate.  I get an average of 6-10 months per drug before they stop working well enough.  Right now, I’m probably at the end of a drug.  It’s scary, because I’ve gone through all of this class of drugs.  We tried moving me on to the next alternative class of drugs, and it was far worse than the failing drug – I felt like my stomach and my esophogas were on FIRE, and I kept vomiting small amounts.

Then there’s the other half – IBS (irritable bowel syndrome).  Caffeine makes me have horrible cramps, if I have much at all.  Hell, I get horrible cramps for no apparent reason – they just strike all the sudden, and BAM I’m curled up in a ball because it hurts like you wouldn’t believe.  Spices will trigger that, too.  Appalling amounts of gas, which is of course embarassing.  Diarrhea and constipation.  I rarely get that sense that I should go to the bathroom soonish – it’s always NOW NOW NOW.  Very inconvenient when you’re travelling.  It hit on the road at one point, when I was maybe 10 minutes from home, and I thought I could make it home.  Um, well, let’s just say it didn’t work out that way.  I pulled into a fast food place that I sometimes ate at and cleaned myself up as much as I could.  (Worse, I was on a date – he was following me to my place, where we were going to have tea and snuggle.  It was probably our third date.  We got to my place and I told the now boyfriend that I was sorry, I needed to shower RIGHT NOW and I understood if he wanted to leave.  He was still there when I got out of the shower, and wasn’t phased when a very mortified Kali explained what had happened.)

I also have Raynaud’s.  Raynaud’s is basically an extreme sensitivity to cold.  See, when your body gets really, REALLY cold, it starts closing up the veins in your extremities so that your blood stays in your core.  It’s why people get frostbite on their extremities mostly.  My body starts doing that sort of thing at much milder temperatures than most people’s do.  It means that I tend to have corpsicle feet, waxy pale colored and cold.  My hands also do it, and my nose and ears.  And don’t get me started on how incredibly painful it is when it hits your nipples.  (Our bathroom is really not insulated enough, and this was before I started using my little space heater to warm it up in the winter…)  I suppose when it’s cold out, I’ve also had it hit on my butt, where it’s not covered by my jacket.  This is one that is mostly just a nuisance, where you have to be careful to bundle up properly and gently re-warm things that have gotten too cold.  It’s uncomfortable, sure, and sometimes even painful.  It’s a little embarassing.  It’s also made the boyfriend almost jump out of bed – I curled up against him and my foot hit his shin, and he JUMPED.

I’ll finish up with the last big one: mental illness.  I am bipolar, not certain which type because I was originally diagnosed type II but started having symptoms more like type I a couple years ago.  I also have PTSD and panic attacks.  The three end up kind of interwoven, with each affecting the others. 

The primary piece is the bipolar, though.  Looking back, I’ve probably had it since around puberty, which I understand is pretty typical.  I was diagnosed at 17; I suppose it would be more accurate to say I self-diagnosed and had it confirmed by my therapist.  I was taking a psychology 101 course, and we addressed abnormal psychology for I think two weeks.  I read the description of bipolar and went ‘oh my god, that’s ME!  Except that I don’t get angry like it says in the book.’  My therapist said that it’s because I’m type II rather than type I.  The thing about bipolar is that essentially your emotional state is a tightrope walker.  It’s easier for us to be pushed over into exaggerated agitation and exaggerated depression by life events, and sometimes they just happen without triggers because it’s a chemical imbalance.  The depression is the harder part, for me.  You just feel…stuck.  Tasks feel far larger than they really are when you look at what needs to be done, and far smaller than they really are when you look at what you’ve accomplished.  It’s hard to feel inspired to do anything.  Hard enough to make yourself do the things you love; nigh impossible to make yourself do things you don’t like.  You feel so insignificant, as if nothing you can do makes a difference, nothing matters, why the hell are you trying?  Don’t you get it, you don’t matter!  It’s very hard to get out of.  It’s like being in the bottom of a pit with a shovel and trying to get yourself out of it.  If you do what’s natural with a shovel and just keep digging, all you do is get deeper.  You have to make yourself try to dig one of the sides into a slope you can walk up, and you deal with collapses and sliding and losing your footing and ending up back in the bottom of the pit.  Often, you need a rope lowered to you – therapy and appropriate drugs.

Mania is harder to explain.  First, let me say this – there are two levels, there’s hypomania and ‘true’ mania.  Hypomania is often not uncomfortable to the person who has it.  In my case, I get hyper-focused and goal oriented, and work for 8 hour stretches without remembering to eat, find myself looking up from my work to see I should have been to bed hours ago, sleep 6 hours and bounce up like I’d had my usual 9 hours.  That’s what I had as an undergrad, and it wasn’t really all that bad to deal with.  I got a lot of things done, and if I occasionally prioritized creative things over academic things, well, I didn’t do myself much harm.  True mania….well, a therapist explained it to me this way.  In mania, your baseline arousal gets raised.  With a higher baseline, something that would have worried you normally consumes you, something that would have been an irritation becomes infuriating, and something that would have given you a moment of pause becomes terrifying.  It’s like all of your emotions got amped up.

My bipolar is mostly managed via medication.  For a long time, I only dealt with depression and hypomania, so I just used antidepressants when I was depressed and came off them when I wasn’t, with a therapist’s supervision.  Nowadays, because I have mania symptoms, I do take medications all the time.  I still have to be careful how much stress I allow in my life; it’s easy for stress to push me into depression or mania, or worse yet, a mixed state, where I feel like molasses in winter except that I’m angry, or scared, or…whatever.

Trigger warnings: description of PTSD symptoms, and panic attacks.

I’m mostly recovered from PTSD.  I was in an abusive relationship just before I turned 18, and I kind of shoved all of it into a box and didn’t think about it until I was 22.  It took me about three years to get to the point where it stopped being a Thing in my life.  One of those years I spent in intense therapy, which is kind of like having major emotional surgery; the next year, I did no work on it and just let myself recover; the year after that, I did some lighter work to ease the scar from the emotional surgery.  It still occasionally pops up, but it’s rare.  I’ll have times when getting boxed into a corner makes me go into a panic, or when someone reaching in too close to me feels threatening, but they’re rare. 

When it was in full swing, any unexpected touch would send me into hyperventilating, and I can remember being in such a panic that I was compelled to abruptly leave, drive home, lock all the doors and windows in the house, and then lock myself in the bedroom, curl up in bed, and get online to instant message with someone I was comfortable with.  There are few things as terrifying as driving on a freeway when you’re in a panic attack; you’re freaked out that someone will hit you, what if someone on the other side of the freeway goes over the median?, oh god that railing was close, where did that car come from?! that truck is white-lining into my lane and oh my god there’s no shoulder here…so on.  I slammed the door in front of my roommate because it didn’t register that she was behind me and calling my name.

Nowadays, I just have times when leaning over me is triggering, or cornering me freaks me out, and I’m still not great with unexpected touch.  People who are close to me get educated on avoiding triggering me, and what to do if I get triggered.  It’s mostly a non-issue, but it comes up now and again.

Panic attacks are managed by breathing techniques, mind-body focus, and medication.  I also know certain actions that will help with a panic attack, like letting myself check that the front and back doors of the house are locked and the windows are closed.  When I have them away from home, I seek out places where I can some space to myself, like a bathroom or a dressing room, or better yet my car.  I also speak to myself, remind myself that no one is really going to hurt me, and that I am safe.  I also learned, over the years, that getting myself curled up in bed and picking up a book that I have read so many times it is a familiar friend is almost guaranteed to calm me down.  Thankfully, being in recovery from PTSD and having my bipolar well-medicated mostly prevents panic attacks.

I think that’s all the big ones.  I guess what it works out to is a lot of preventation and preparation for ‘just in case’.  A lot of adjustment, that’s for certain.  My life is very different than it was before I developed these disabilities, and part of coping with that is finding new hobbies and new friends who get it, new places to talk, so on.  Since I became disabled, I’ve focused a lot more on my creative side.  I knit and crochet and paint and make jewelery now.  I blog about living with a disability.  I have a service dog.  I’ve made new friends who have disabilities, and one of them has become a roommate.  I have a boyfriend whose capability to understand and help is astonishing.  The biggest part of living with it is making it worthwhile, and you do that by finding things that make it feel full to you.

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I have to start this by saying that it has been about a decade since my sister and I could stand each other.

Things are the way they are between us for a lot of reasons. 

My father was a terrific father to small children, but when his children started forming their own opinions and disagreeing with him, even rebelling (very mildly in my case; rather extremely in hers), he couldn’t take it.  He was an angry control freak, and he did not respect us as people.  It feels very sordid to put this in writing.  You have to understand, I love my father and he and I get along reasonably well now – now that I am 27, have two college degrees and am about 2/3 of the way to a third, and have not lived in his house for most of the last decade.  It has taken a lot of work and fighting to get to this point, and I sincerely believe it would not have been possible if I had not moved out as young as I did.  Three years ago, he and I had a serious fight in which I told him that if a man I was dating treated me the way he treats me, I would call it abuse and tell him not to let the door hit his ass on the way out.

My sister has not been so lucky.  Her bipolar may be worse than mine; it is without a doubt more poorly managed.  She has anxiety issues and may also have borderline personality disorder – she has been diagnosed with it by one psych, and I personally believe it accurately describes her.  She also has an eating disorder that flares on and off.  She barely finished high school and spent the year and a half after high school utterly fucked up on drugs, alcohol, and mutually abusive relationships.  She enrolled and failed to finish multiple semesters at the community college, which only added to my father’s lack of respect for her.  I have always been the practical one, the one whose expectations are at least more-or-less based on reality.  My sister has not had long periods of not living with my parents.  She had an apartment for a while, but it was only a few miles away and she came over weekly to do her laundry (or to be more precise, to have my mother do her laundry).  A little over 3 years ago, she got pregnant and decided to keep the baby.  She didn’t bond with my nephew when he was born, though in the last year she has become much more involved.  However, she really isn’t capable of being a single parent, so she is effectively trapped in my parents’ house because she needs the help.  She told me years ago that she resented me for leaving when I did, abandoning her with our father; it certainly explains a lot of her behavior towards me.

I say all this not to exonerate her, but to explain the situation I find myself in.

You see, my mother’s life largely revolves around trying to keep my sister from harming herself.  My father and my sister have terrible fights, like he and I had for years before I left for college.  My sister’s mental health has been poorly managed since she developed bipolarism, we think at around age 12, the same age as me.  She has only had one good therapy relationship, and has disliked the way she feels on medication strongly enough to mostly be off of them.  She swings suicidal unpredictably.

My mother is the only buffer between my father and my sister.  They are dysfunctional in ways that are directly at odds with each other, and there is a constant tension and anger in this house.  She also gets dragged into fights between my sister and I, usually because my sister tells her how angry she is over something I said or did.

My parents don’t really understand how severe my bipolar is, for a lot of reasons.  I’m a more private person than my sister – it may seem hard to believe, since you read this blog and I write all kinds of deeply personal things here, but I haven’t ever been very open about my emotional state with my parents.  As messed up as my relationship with them has been at times, I have always wanted to be someone they would be proud of.  I live farther away, and have for a long time, so they don’t see the days I don’t manage to get out of bed or the projects that don’t get finished or the crying jags or the times I get suicidal.  I’m far more self-reliant than my sister is, and I make shit work until I can’t.  I also have a better network of friends, who I rely on in times of need instead of asking for help from my family; her friends have historically been users.  My bipolar looks different than hers – hers is more obvious, violent lunges in one direction or the other, where mine sneaks up on me until the whole world is gray or so bright I can hardly bear it.

I’m writing about this because I made my mother cry today.

My sister and I clashed pretty badly last night, and I told my mother about it today because for once, I didn’t want to be the bad guy.  I’m always the bad guy.  I’m always supposed to be on eggshells around my sister, and if she gets hurt or angry about something I said, it’s my fault.  And even though, for once, I was the one who talked to our mother first, I was the bad guy again.  Even though my sister presented some pretty damn fucked up opinions, which included an opinion that (among others) people with disabilities (later refined to ‘people who don’t contribute’) should be killed to ease world overpopulation, it was my fault that we clashed because I told her that what she was saying was fucked up and I insisted in a slightly later part of the discussion that science has not proven causation between weight and the amount/quality of food a person ingests.*  And furthermore, that dieting is more dangerous to a person’s health than being overweight.

Why is it my fault?  Because I’m supposed to be less fucked up and therefore more is expected of me.

Perhaps the most fucked up part of this is that more being expected of me is what led me to attempt to kill myself when I was 15.  I couldn’t bear the fact that I was constantly disappointing people, failing to meet expectations, and I really believed that people would be happier without me.  Then, it was more expected of me academically, because I was so damn gifted.  Since then, it’s become more expected of me in terms of work and relationships because supposedly I’m less fucked up emotionally.  Because yeah, putting that weight on me again is going to be a healthy thing.

*No, this is not an invitation to debate this point.  There are studies, which I am not in the mood to dig up right now, that point this out.

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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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I have had words with the director of the legal department I work in about using the word ‘crazy’.  It was a pretty fruitless discussion, to be honest.  I didn’t self-identify myself as crazy to her; I’m probably more in the closet about that than I am about the fact that I am attracted to more than just men*, and even THAT I almost never discuss with anyone I’ll see face to face.  It’s all information I’ve had people use in ways that made me profoundly uncomfortable.

Well, this week it suddenly got worse.  We were looking at custody cases, and in multiple cases my professor referred to people doing ‘crazy’ or ‘insane’ things.  In none of the cases were there actual references to mental health issues – it was all things where the professor could have subsituted ‘absurd’ or ‘ridiculous’ and managed to express an almost identical concept.

Look, when you speak of crazy, you speak of people like me.  People who live with mental illness.  People who do occasionally do irrational things, or lose touch with reality.

That doesn’t make us people who try to cut off our child’s relationship with our former partner, who is their second mother.  Nor does it make us people who donate our sperm and stay in the picture with time, gifts, money, etc, and then get shocked when they end up on the hook for child support.  It doesn’t make us women who lie, cheat, get artificially inseminated with the sperm of the person they were having an affair with even though the affair ended two years before the insemination, lie to the doctor involved, and try to nail the sperm donor 5 years later for child support even though they’d had no contact since the child’s birth.

Now, don’t get me wrong, some or all of these people may have mental illness.  But if you don’t have a reason like a psychologist’s testimony, don’t go attributing people doing rotten and absurd things to each other to crazy.

I’m crazy.  I have bipolar disorder and PTSD.  I live with swings through depression and mania, occasional episodes of paranoia, and trouble with people getting too close to me physically.  I have, on a few rare occasions, hit someone because I was triggered by something they did, and I was so afraid that I needed them to get away from me IMMEDIATELY.

That doesn’t make me into someone who hurts others because they can.  It doesn’t make me someone who is willing to inflict emotional harm on a child because I don’t like someone they care about.  I am not them.

But I am crazy.

* I say ‘more than just men’ here because bisexual is a really, really problematic word.  It’s cissexist and binarist, and doesn’t recognize that there are a lot more varieties of gender than ‘male’ and ‘female’.  I personally know people who ID as queer, agendered, and bigendered, who would be made invisible by the term bisexual.  I prefer heteroflexible, but even that is problematic because it still has that binarist issue.

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