Living with it (trigger warnings: description of depression and panic attack)

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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Just a quick little post –

Hi everyone, I just wanted to let you know where things stand.

We’ve upped my dose of the medication that treats my POTS, and thus far it seems to be at least somewhat helpful.  I’m having much fewer dizzy spells and haven’t collapsed again, which is good news.

School-wise, I decided it was in my best interests to withdraw from my classes.  One of my classes, instead of withdrawing, I am being allowed to get an extention until August 29th, which means I can basically not work at all on it until the end of May without problems.  That’s what I figure I needed, to get things under control health-wise.  I am disappointed to do it, but I don’t see a better option at this point in time.

As far as the blog goes, part of the quiet lately is because I am writing up a truely massive post about what it’s like to live with my disabilities, singly and as a whole.  I hope you enjoy it, when I finally get it up there!

~Kali

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Falling to pieces

The last three and a half years have seen a continuous downward spiral of my health.  It’s been hard, watching bits and pieces of function just fall away.  I’ve always been competitive and driven, so watching this happen has made me want to scream.

This has been the first semester where I think I may need to completely withdraw for health reasons.  I started the semester with a sinus infection that just wouldn’t go away.  Three courses of antibiotics knocked it out, but then a viral infection settled in, and it took forever to clear out.  That was just the start of things.  Then I suddenly started having tons of pain in my left arm and hand, with my fingers spasming and dropping things.  At the same time, my dysautonomia symptoms started flaring worse.

My doctor tells me that the symptoms in my hand and arm are a pinched nerve in my neck.  They’re hoping that it’ll clear up with physical therapy, heat and ice.  It’s better now than it was before, but I still have times when I can’t type, when I can’t write.  It stinks.  And it HURTS.  My shoulder, my arm, my hand…they all hurt, sometimes stabbing, sometimes electrical, sometimes pins-and-needles so bad that I have to shake my arm because I can’t stand it.

And the dysautonomia…well.  I collapsed on Monday.  I collapsed again on Thursday, on the way to class.  I missed work on Friday, because I’d collapsed twice in a week.

I’ve missed so much school, so much of my clinical, that I probably need to take a medical withdrawal this semester.  I’m failing everyone.  I’m scared, because my dysautonomia has gone so badly awry and because I worry about the pinched nerve.  I’m afraid I won’t be given a chance to finish my degree.  And I am tired.  I am so, so, SO tired of all of this.

So that’s why it’s been quiet around here, and I’m sorry about that.  I’ve missed out on things I very much wanted to be part of, and I’ve missed talking about things that were worthwhile conversations, and I’m hoping that someday that will change.  I’m also afraid of what will have to happen in my life for that to change.

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A Bad Night

(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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Sorry I’m so inconvenient

I mentioned a couple of months ago that I’d been diagnosed with POTS and that it made me extremely sensitive to heat.  And when I say sensitive to heat, I mean prone to dizziness, nausea and vomiting, collapsing, and fainting.  It’s really annoying, because it’s something that comes up at times when you wouldn’t expect trouble.

Like in one of my classes.

The main building of my law school is 8 stories tall.  On the upper 3 stories, there are 2 little boxy classrooms per floor.  They have a wall of windows that face into the atrium that goes up the center of the building from the third floor to the ceiling.  For the number of people they seat, they’re very small classrooms.  They seat about 35 people plus the professor, with 2 rows on the left and right of the classroom and two rows across the back of the room.

Unfortunately, they have a terrible tendancy of getting hot.  The higher in the building you go, the hotter these little rooms seem to get.  It’s a combination of poor air circulation, density of people, and heat rising through the atrium and passing through the wall of windows at the back of the room.

I missed the first two weeks of class.  The first week, it was incredibly hot and my boyfriend was out of town at a funeral, and Hudson had an accident on the sidewalk, prompting me to decide he shouldn’t be out in public for a couple days until things cleared up.  I honestly can’t tell you why I missed the second week.  I just don’t remember.

The third week, I went to class and was ROASTED.  It was hot enough that I felt ill and dizzy, despite drinking about a litre of liquids during the class, between my gatorade and my water.  The only reason I made it through was because I was wearing summery clothes – relatively skimpy.  Incidentally, that week, the professor stopped me and recommended that I switch from taking his class officially to taking the class as a guided research class.  He’s one of the professors who is very strict about attendence rules, and unfortunately law school attendence requirements have been held to be reasonable under the Americans with Disabilities Act, so there’s nothing I can do about it.  By taking it as guided research, I’d be able to miss more classes without failing.

I fired off an email to the disability coordinator explaining the problem with the temperature in the classroom and pointing out that it’s only likely to get worse as we swing into fall and they start turning on the heat in the building (not to mention the fact that I’ll need to dress in warmer clothing).  I got an email back from him stating that as I was taking it as guided research, I should have enough flexibility to deal with the problem.

That meant another week in the same classroom, which meant choosing a spaghetti strap, low cut dress even though the weather outside was a bit too cool for that.  I was still too warm, and that time actually felt like I might fall over when it was time to get up and go.  I had to sit for a while after people were leaving.  Fortunately, the doors being opened lets out most of the excess heat, so I was okay pretty soon after.

Of course I emailed him back and explained that because of the unpredictable nature of POTS, I’d have to not go to any classes in order to avoid the risk of a collapse or faint.  Perhaps the most frustrating part of the whole thing is that the first thing I lose is my ability to tell how my body is doing and what I need to do to prevent problems.  I was a bit annoyed that my original email explaining why I couldn’t be in that classroom wasn’t good enough for him.  It felt a little bit like they were trying to shunt me off to the side and make ‘accomodations’ that were the least inconvenient for them – put her in a guided research instead of a class, and then it’s all on her if she can’t get there!

In the end, they moved the classroom.  It’s not a huge improvement – we’re still in one of the same boxy little classrooms, just moved from the 8th (top) floor to the 6th floor.  The temperature is somewhat lower, though I do not know if it will be enough once the building switches from air conditioning to heating.

I hate things like this, where it feels like I’m treated as an inconvenience.  It’s not like I get some kind of power trip asking for accomodations.  I don’t push people around because it’s fun.  When I ask for something, it’s because I NEED it, and my health, safety, and ability to continue going to school are jeopardized.

Look, I’m sorry I’m so inconvenient.  But if you had to deal with the sheer number of inconveniences I deal with every day because of my disabilities, you’d realize that I’m really asking for very little.

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Emergency fail

Well well well, wouldn’t you know it, I managed to get discriminated against twice in one night!  Saturday was quite the exciting night, as it involved me being ill enough that we were wondering if we should head to an ER before I went all floppy and semi-responsive and started having pain in my chest and difficulty breathing.  I also had a dehydration-induced migraine.

Looking back, I think the difficulty breathing was just that I was having difficulty doing ANYTHING.  When I get dehydrated, I have this alarming tendency to go from okay to NOT very quickly.  And, well, there’s not much like throwing up everything and continuing to throw up liquid out of your previously empty stomach to make you dehydrated.

I wasn’t able to help move me much, and we live in a narrow little row house.  Without my help, the boyfriend really can’t get me down the stairs.  He was getting scared and I was getting less responsive, and complaining that my chest hurt, so he called an ambulance.  I think it was a wise move given the situation.

Except, y’know, that the ambulance wasn’t terribly helpful.  First off, because we live in a narrow little rowhouse, they can’t easily get the gurney upstairs to the bedroom.  So they sent one of them up to help the boyfriend maneuver me.  After correcting him to not lever my shoulder (dislocated Thursday), I still had to manage to walk down the hallway, which was a near thing.  My legs were shaking, and I’m still surprised I didn’t just fold up.  Being vertical and dehydrated for me puts me at a high risk of collapse or faint.

We managed to get me down the stairs and to the gurney waiting outside our front door.  They get me on the gurney and strap me in, then wheel me into the ambulance.  As this is happening, the boyfriend decides to drive to the hospital because he thinks the ambulance will be too crowded with him and the service dog inside.  One of the EMTs is pretty cool and says something that we later realize may have been a warning about the ER, but the other one…the other one, who was driving, decides to stand outside the doors of the ambulance and harass me over the service dog.  What do I think he’s going to do to me in the ER?  It’s unfair to other people to bring my dog into the ER.  Why do I think it’s okay to do that?  So on and so forth.  I eventually tell him to knock it off, which he reacts to in surprise as if he wasn’t being completely inappropriate.

(Incidentally, my ankle partially dislocated on the way to the ER.  It wasn’t really anyone’s fault, but my feet were strapped in and we hit a little bump and there went my ankle.  It certainly added to the misery of the evening!)

So we get to the ER.  By the time the ambulance gets there, the boyfriend is already there with Hudson, arguing with security about letting my service dog into the ER.  Yeah, you got that right, security said no service dog in the ER.  It’s discrimination.  We’ve taken Hudson into other ERs.  We would have gone to the one we know is service-dog friendly (where, in fact, they love Hudson – yeah, they’ve seen him that often), but when you’re in an ambulance, you don’t have all that much choice over where you get taken.

So the boyfriend argued with security.  The first guard seemed like a decent human being, but one hamstrung by policy.  He had to call his supervisor, and THAT guy…that guy was the worst we ran into all night.  He said that “human rights trump animal rights” and ignored that it wasn’t Hudson’s rights he was trampling, it was MINE.  When I was brought from registration to triage, I noticed that Hudson and the boyfriend were gone, so I asked where my dog and my boyfriend were.  The triage nurse explained to me that they weren’t allowing the dog.  I told them, it’s like taking away someone’s prosthetic leg.  They argued that since I was in a wheelchair and would soon be on a gurney, I didn’t need the service dog.  I requested her supervisor.  Her supervisor came out, and they asked me what exactly Hudson does.  I explained a list of the things he does, and they said that since they could do all of that for me, I didn’t need Hudson.  I told them again that they were taking away my independence, that the entire point of a service dog is being able to do those things for myself.  I told them it was like taking away someone’s prosthetic leg, something they had no right to do.  They told me that they had to keep the dog out just in case someone came in with asthma and a dog allergy.  now, if they HAD a patient like that in the ER and couldn’t sufficiently separate us, that would have been a reasonable reason not to allow Hudson in.  However, the theoretical possibility is not.  Hospitals are allowed to restrict dogs from places like burn wards, where the slightest contagion can cause dangerous infections.  However, they are NOT allowed to just blanket refuse to allow service dogs into their facility.

The security supervisor kept after me.  The guard said they were trying for compromise and I said no, you don’t want a compromise.  You want me to do things the way you want.  The guard said no, but the supervisor said ‘I won’t lie to you, you’re right.’  I said that’s a bully’s version of compromise, and you’re no better than a schoolyard bully throwing your weight around.

The ER supervisor said I had the option of going elsewhere.  Bullshit.  When you’ve been brought in by ambulance because you’re barely able to stand with tons of assistance, you don’t have the option of going somewhere else.  Especially when somewhere else is on the far side of the city.  I told them to just get me through and get me out of here.

The security supervisor followed the boyfriend outside, where he was waiting with Hudson, and started harassing him.  He said that the boyfriend was ‘making trouble’ (by standing quietly outside after he’d given up on being able to protect my rights?) and kept after him about the dog being unnecessary in the hospital.  The boyfriend eventually took Hudson home, because he didn’t have any other options, and returned for me.  I think it was the first time in his furry little life that Hudson’s been left entirely alone, and to be honest I was worried he’d hurt himself trying to get back to me.  He’s always had someone with him – his puppy-raiser, his kennel-mate, trainers, me.

So I was left completely alone.  I was reliant on the nurses answering the call button (which took forever) for the most basic of things – needing to pee, needing the lights shut off and the door closed because of the migraine, wanting the damn monitor to stop beeping because it felt like someone was driving spikes into my head every time it beeped.  Things that my boyfriend or my dog could have helped with.  I had to wait for an HOUR at one point to get the call button answered, and the nurse walked in and pushed the ‘off’ switch without even asking me why I needed her, abandoning me with the fluorescent lights still on (my god are those things painful with a migraine) and the door open to all the noise of the ER including a woman yelling.  I was in so much more pain than necessary from all these little things that could have been done for me if I hadn’t been trapped alone by their discriminatory policies.  Bullshit they could do these things for me.  Bullshit that I’d be okay without someone to help me.  Bullshit bullshit bullshit.

I think my boyfriend being kept from me was retaliation for being ‘uppity’ and demanding my rights.  Another claim to file.

They have the right to bar a dog with reason – if the dog presents a danger to others (actual, not theoretical) or if the dog is out of control and behaving inappropriately.

I spoke to the security today and was informed that what happened was against policy.  However, as 4 people acting within their job capabilities denied me access, it’s still a violation for which they are liable.  I plan to sue them.  At the very least, they are liable for a $10,000 dollar fine.  I also want training to EVERY employee mandated.  I’m torn about whether I’d prefer a formal apology or money damages; the whole situation was egregious, I suffered more pain because of it, and damn is it ever upsetting to be discriminated against.  I cried as I lay there, alone and in pain, and they need to pay for that.

At this point, as I see it, I have 3 choices: the first is to take my case to the Department of Justice, which is the federal branch that prosecutes ADA violations, the second is to take my case to a comparable state agency, and the third is to find a lawyer and prosecute the case myself.  I’m inclined towards the third option because if I take it to a government agency, I have virtually no control over what happens and what is demanded as reparation on my behalf.

But believe me, no matter which path I end up taking, I WILL be prosecuting this.  It was a horrific experience, and I do not want anyone else to go through it.  With cases like this, the only way to get through to people is to hit them where they’ll feel it – the pocketbook.  I hate that this is the only way to make people really learn lessons, but so be it.

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The Fall-out

Well, I knew a day like Wednesday would have fall-out.

Because of the taxi cab discrimination, I took public transit to get home. It was harder than I expected. For one thing, the first subway station I went to was 4 blocks from work (because it’s a solidly accessible station), and it had a broken elevator and was thus completely inaccessible. So I went back two streets to the partially accessible station and hoped I was on the accessible side. I wasn’t, but there were ramps that said ‘police use only’ right next to the stairs leading you up over the subway to the other side, and I’ll admit I used them.

Then I got on a train that wasn’t due to stop at my stop, and had to get off a stop early. If I had waited there just a minute, the next train that would have gone to my stop would have been there, but I had decided that I couldn’t wait in the heat not knowing when the next train would come. I was in the pedestrian overpass when the next train came.

So then we had to take the longer route home. Poor Hudson had already been dragged 6 blocks in the heat, poor thing, and we had almost a mile from the station to home. He was panting hard and I’d had to slow down my scooter because he couldn’t keep up his trot. I got home about 20 minutes late, but at least I’d called my aide so she knew I wouldn’t be on time.

I couldn’t make it into work the next day. With POTS, it tends to take days to recover from heat exposure, and this is no different. I’m still feeling out of sorts today. I missed class yesterday as well. I also collapsed. I was getting up off the couch and I got to standing and then suddenly I was on the floor. I nearly squashed Hudson, but he had the sense to dart out of the way. I got stuck laying there for a while. I don’t know how long, only that Hudson was worried about me and nosing my face and at first I couldn’t even push him away a little. I couldn’t even bring my hands up to my face. I probably should have called myself an ambulance. Unfortunately, if I’m at the collapsing point, my brain is pretty badly addled and my judgment sucks. I was able to reason that they would have to break down the locked front door, and that was a bad thing…and I really never got farther than that.

I’m now in a bit of trouble, because at this point I’ve missed 2 scheduled days of my internship. I have to talk to the disability coordinator, and I’ll probably need to get a note from my doctor explaining POTS. I’m sure I’ll have to make up the time.

There was one good piece of ‘fall-out’. Well, at least I think it’s good. Yesterday, I called the cab company and spoke to their manager about the way I’d been treated by the cab sent to pick me up. The manager was both very apologetic and clearly upset by the discrimination. He said that driver would be taken off their roster, and he told me what I needed to do to get him reviewed for possible loss of taxi license. I figure if he loses his license, I’ll consider it enough, but if he doesn’t I may file an ADA complaint against him. I think it needs to be done because the next person he discriminates against may be in worse shape than I am and less able to defend themselves after the fact.

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Crash, Bang, Here We Go Again

When I was a kid, I was a Girl Scout who went to camp every year, and eventually I was a camp counselor.  So I know far, far more than my share of camp songs.  Matter of fact, I don’t know anyone who knows more of them than I do.  There’s a particular one that is coming to mind right now…

Crash, bang, here we go again. Here we go again, here we go again!

Crash, bang, here we go again.   Jolly good friends are we.

We laugh, we sing!  We laugh, Ha ha! We sing, tra-la!

Crash, bang, here we go again.  Jolly good friends are we.

To give you an idea what this little ditty sounds like, you have to know that there are motions done with it.  This was one of the dining hall songs.  With all the kids and staff sitting at tables except for the handful of us (staff, that is) whose duty it was to lead songs, we’d start this song.  You clap your hands on the word ‘crash’ and slam your elbows into the table on the word ‘bang’ to make a big noise.

Why is this coming up?  Well, I had one heck of a crash yesterday.  I was at a baseball game.  Now, don’t get me wrong, I suppose baseball is a fine sport, but it’s not one of my preferred sports.  I much prefer watching basketball or soccer, and back when I played, it was always soccer.  But that’s neither here nor there.  I was there because it was a service dog training day with my service dog organization.  They get tickets for us all together, and we practice working in crowds and having our dogs around loud, scary things.  For the most part, it goes off pretty smoothly, but last night, I was the exception to the rule.

See, it’s the POTS.  Not the cookware variety, but my disorder that just got diagnosed a week ago.  It was a hot day, so at first we were back in the shade, sitting flat on the cool concrete.  The sun went pretty permanently behind clouds, and it was going down, so we moved out to the benches where we could actually sit down.  We must have been out there half an hour at least when suddenly, in the middle of sharing some ice cream with the boyfriend, I wasn’t feeling so good.  In fact, I was REALLY not feeling so good.  I drank some more water and leaned against the arm of my stadium chair.  It got worse and I grabbed on to the back of the row in front of us.  And then I had two hands on the back of the row in front and my god the ground was close and I felt like I was falling fast and going to splatter against it any moment.

The boyfriend noticed when I first reached for the bench in front of us, I think.  I know he started saying something to me, but when I’m that far along, everything sounds a bit like the adults in Charlie Brown cartoons – all nonsense syllables.  One of the stadium’s EMTs noticed me slumped forwards like that with the boyfriend trying to get my attention.  I think she must have had to ask me everything two times, at least, and I’m sure I was mumbling my answers down into my chest.  I don’t know if the trainers, who were behind me, started reacting to the way I was acting; I barely remember the EMT! 

They sent for a stair chair to get me back to first aid and covered me with 4 icepacks, shoving them under my armpits, against my chest, and between my thighs.  They asked me if I could stand to get to the end of my row.  HAH!  Are you kidding, staying conscious while sitting was hard enough.  Fortunately, I was sitting in my stadium chair, so they were able to slide me down the row on it and they only had to have me stand up for a moment to get in the chair.  Once they had me up the stairs, one of the EMTs had to leave because while they’d been trying to take care of me, someone had been hit with a baseball.

It must have been an eventful night, because in the second inning, I was their 37th incident.  And this wasn’t a major league park, where you’d expect that, it was a AA game.  They stuck me and Hudson in a first aid room the size of a large closet and kept piling ice packs on me, moving them so that they sat on places like my head, or between my forearms.  You can imagine how crowded a room that size must have been, to have me and Hudson and two EMTs in there.  The boyfriend was stuck outside waiting to find out what the verdict was, but I had a feeling I knew what the answer would be – go home!  The door opened for a kid who’d scraped her knee and needed to have it cleaned up, and almost hit Hudson in the head.  The EMTs re-arranged their furniture so Hudson could squeeze in next to me, where he’d be safer.  They kept bumping the chair next to him, and because Hudson has a fear of things hitting him, that was enough to pop him up and get him trying to escape his very tight little space eeeeeeevery time.  I’m not entirely sure how long we were in there, but it FELT like a long time!

After a little longer, they managed to get my temperature down by a couple degrees and decided it was safe to send me home.  They asked me if I wanted to go home, and my first thought was that I didn’t want to get in trouble with the trainers!  Silly, when having to call ambulances is a semi-regular part of training.  Hey, I didn’t claim that I was able to think real well in that state!  They told the boyfriend to pull the car up right next to the stadium entrance and come back up, then they’d wheel me out in their wheelchair and we could go home.

So he does this.  Now, all this time I’ve been in the stair chair, which is kind of like some sort of summer folding chair but with wheels on the back feet, so it can be backed up the stairs.  So we have to transfer me to the wheelchair, and if the wheelchair is in the room, there’s no room for Hudson!  Poor boy got handed outside to the little room and be held by the EMT’s wife while they got me set up.  Because they weren’t used to handling a service dog plus a wheelchair going in and out of their little tiny elevator, I let his wife take Hudson again.

They sent me off with ice packs to keep me cold on the ride home.  My theory that I wasn’t dehydrated must have been true, because a few minutes out from the station, I REALLY had to pee!  We got off the freeway in the middle of nowhere at a stop that said they had food and fuel.  Well, one gas station didn’t have a public bathroom, and the other one, someone had locked the key in the bathroom!  Desperate, we went into a place whose sign said it was a tavern.  I figured the boyfriend could order some fries to go, so we’d at least be sort of patrons.  No dice!  He ended up buying a 6-pack of beer to take home.

I went into the ladies’ room only to discover that they didn’t have a handicapped accessible stall!  And the doors swung inwards on both of the stalls, so there was no way I was squeezing a dog in there with me.  Hudson was supposed to wait outside, but he decided he wanted to follow me, and then plonked himself down on the floor.  At least it looked clean.  I had to put the handle on his harness down flat so I could close the door, and it was juuuuust barely enough space.

Well, we made it home eventually.  I was hit hard enough that I didn’t make it to the class I was supposed to be at today.  You see, this kind of crash takes a day or two to recover from.  Don’t worry, I don’t have much planned for tomorrow – a trip to my physical therapist and maybe sending my aide out to acquire a few groceries.

One bit of good may have come out of this – the EMT and his wife would like to donate a couple of puppies out of their litter, once they have it!  I don’t know how that will work out, but if there do end up being two more service dogs (or home companion dogs, which are basically service dogs but only inside of someone’s house) because of this, well, I guess I won’t take it too hard.

And Hudson?  Well, Hudson thought it was all a grand adventure, because he got petted by the EMT and his wife, so he made new friends.

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Disability makes people uncomfortable

There are a great many topics we consider taboo in the workplace – religion, politics, sex (usually) – and disability definitely has to go on that list.

Because I have POTS, I’m at a risk for fainting or needing to do things that look odd like suddenly sitting or lying on the floor.  I thought it was only fair to warn my coworkers.

First I warned the legal secretary in our office, since I know her best.  She’s a lovely person, she really is, but it was clear she was uncomfortable.  I mentioned that there’s a risk of me fainting in the heat, and she started asking if it might be blood pressure issues, that sort of thing, but in the sort of tone that acknowledged that this was Not Spoken Of At Work.  I told her that on the rare occasions when I faint, I generally come around within a minute or two, and not to worry or call for help unless I was down for more than five minutes.  I managed to ease her worries by pointing out that I haven’t had a full faint in 2 years, and that the most likely thing to happen was that I’d get woozy and dizzy, and sit back down hard in my chair when I tried to stand.  She eventually got comfortable enough to make a joke about keeping the air conditioner blasting in the room where I work.

Today, I told my supervisor, the judge’s clerk.  I told him that it was possible that I’d have to do something odd like sit or lay down on the floor, and he gave me this look like I’d just dropped a frog in his lap.  I told him that it was a blood pressure problem and it got worse in the heat, so the current weather was very hard on me.  He continued looking like there was a frog squirming on his lap, and said, “Er, okay.”

Now, I was warning my coworkers so they wouldn’t panic or freak out if I did happen to faint or collapse, or sit on the floor for no apparent reason.  I hadn’t expected them to be so very uncomfortable with discussing my disability, in ways it might affect them, but boy were they!

Because we treat disability as a very taboo issue, when a person chooses to speak about it, we tend to react as if they had just stripped down to their underwear and started dancing around in the middle of the office.  While disability is indeed a very personal issue, and one that I think shouldn’t be broached without a firm relationship with the person who has the disability, it’s disconcerting to realize how much other people don’t want to deal with it.

There are reasons, of course.  If you talk to a healthy looking young person about their disability, you have to admit that there is theoretically nothing to stop anyone – including you – from becoming disabled.  You have to acknowledge that disability makes their abilities different, and many people have to struggle over the idea of whether that changes their value as people.  You are given an introduction to a different perspective on the world, especially if the person with a disability chooses to talk about some of the ways the society’s treatment of us sucks.  It’s a pretty big paradigm shift, especially if you can wrap your head around the idea that being human, and thus of value, is not dependant on having certain abilities – it is an innate quality in all of us.

But part of getting to that point is learning to listen to people talking about disability without getting the creeping feeling that somehow talking and listening to/about disability is wrong.  You have to get over the idea that disability should be hidden, shameful, embarassing, and degrading.

It’s a lot to ask a person to do.  Any time you push someone to take a closer look at their privileges and their prejudices, it’s a very uncomfortable journey for them, because they have to admit they HAVE privileges and prejudices.  And let’s face it, none of us wants to admit that we have accepted and shaped our world view around bigoted notions.

So I can understand why my coworkers are so uncomfortable when I mention that my disability might have certain affects on me while I’m in the office.  But that doesn’t make it any more comfortable for me.

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Another diagnosis to add to the pile

One of the things about living with Ehlers-Danlos Syndrome is that you don’t just live with EDS, you live with EDS and all its friends and relatives.  And my, oh my, does EDS have a lot of them.

Today, I officially got diagnosed with POTS – Postural Orthostatic Tachycardia Syndrome, which is a particular variety of dysautonomia.  To understand what POTS does, I have to give you a little bit of background biology.

Your autonomic nervous system regulates all of the involuntary parts of your body – digestion, heartbeat, heating and cooling mechanisms, so on.  Now, when you move into a more vertical position (say, from laying down to sitting, or sitting to standing), gravity has a greater affect on where your blood goes.  A certain amount pools in your lower limbs and your abdomen.  In a normal person, the veins in your body tighten slightly and your diasystolic blood pressure increases a bit, to make sure your head gets enough blood.

In someone with POTS, that increase in diasystolic pressure never happens.  In fact, blood pressure usually falls.  To make up for it, the heart starts racing (which is known as tachycardia).  The result is that you end up with dizziness, headaches, nausea (even vomiting), disorientation, fainting, near-fainting, tunnel vision…the list is really quite long.  It’s much worse in the heat, or when you’re dehydrated, or when your electrolytes are imbalanced.

This is the reason I got stuck in the bedroom in the heat wave a couple weeks ago.  It’s why I have to stay in climate-controlled places.  It’s why I always have water by my side, and have to snack on salty foods often.  It’s hurt me, it’s come close to hurting Hudson (when I nearly fell on him and squashed him).  It’s why my heart races every now and again, for no reason.  It’s why I fall back down into chairs a couple of times a day when I go to stand up.

I’ve suspected I might have this for…well, years.  It’s gotten perceptibly worse the last 3 years in a row.  Finally, I’m symptomatic enough for them to put a name on it.

Here’s the hard part of that: expecting the diagnosis doesn’t make it less upsetting.  It may seem silly.  You would think, okay, I know this is likely to be the result, so I can emotionally brace myself and it won’t swamp me nearly as badly as it would have if it was a surprise.

Well, not exactly.  The things that make a diagnosis tough don’t change just because you are expecting that diagnosis.  It doesn’t make your symptoms any less real.  It doesn’t make them any more likely to go away – quite the opposite, most of the time.  It in fact makes it clear you aren’t imagining them, which can be affirming but also means that these annoying, even upsetting things are real.

So tonight, when I’ve had something of a triumph in getting a doctor to acknowledge a set of symptoms (most of which can’t be measured) and give them a name even though the test wasn’t 100% conclusive, I’m frustrated and angry and upset.  I’m so damn tired of there being one more diagnosis, one more thing wrong with me, one addendum to the list of things to watch out for and activities I ought not to do.

I suppose when I put it that way, it makes sense, doesn’t it?

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