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Posts Tagged ‘ehlers danlos syndrome’

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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I’m training Hudson to do my dirty work.

When the boyfriend teases me, I used to poke him or tickle him.  I’ve had increasing problems with my hands for longer than we’ve known each other, though, so there are often times when I can’t do that.  Particularly recently, with the maybe-it’s-auto-immune thing I’ve been dealing with.

So my solution is to find something Hudson can do.  I’ve invented the command ‘toes’, at which Hudson is supposed to nose or lick the boyfriend’s toes.

The boyfriend is amusingly tolerant of the whole affair.

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Or at least, that’s what this week has felt like.

I had three appointments this week: one with my GI for new symptoms, one with a rheumatologist for a collection of new symptoms I mentioned in a previous post, and one with the headache center because my headaches are getting worse and I’m willing to try a preventative again.  All three appointments concluded in ways that I have to admit I’m far from thrilled with.

My new GI symptoms were lower GI bleeding and increased GI pain.  Now, I’ve been diagnosed with IBS, so I’m used to a certain level of GI pain, but it’s usually because of spasms and I have medication to treat that.  This pain doesn’t respond to those pills, and GI bleeding is always a concerning symptom.  There are two basic possibilities when you’re dealing with lower GI bleeding: hemmorrhoids and inflammatory disorders.  While hemmorhoids are a vile thing to consider, they would definitely be the lesser evil here.  One or two treatments could get rid of them, and while there’s a chance of recurrence, it’s not a huge lifetime thing.  Inflammatory disorders are a whole other boat.  Both Inflammatory Bowel Disorder and Crohn’s Syndrome are auto-immune issues, which means that your own immune system is attacking your GI.  We’re talking medication probably for life and the possibility of major surgeries to remove parts of the GI system that get too badly damaged.  Not pretty.  Both are currently on the table, and will remain that way until I get a sigmoidoscopy done next month.  I’m sure you can imagine, with GI pain, how much I want to have a camera shoved up my derriere.  Especially since the last time, I ended up in the ER a few days later with one of the few episodes 10 out of 10 pain I’ve ever had.  Ugh.

The rheumatologist appointment wasn’t a whole lot better.  I’ve seen this rheumatologist before; in the summer of 2008, he was the first doctor who suggested I had Ehlers-Danlos Syndrome.  He struck me as a kind man and a good diagnostician, so when I needed to see a rheumatologist, I asked for him by name.  We talked about symptoms, and he could see the swelling in my wrists even if he couldn’t see it in my fingers (because I have exceptionally slender fingers, they look about normal when swollen).  I didn’t like his answers, either.  He said that there were a couple of possibilities that sprang to mind.  Because of the GI symptoms under investigation, he said that I could have Inflammatory Bowel Disorder or Crohn’s, which can cause generalized arthritis-like inflammation.  I could also have a sero-negative rheumatological disorder like rheumatoid arthritis or Sjogren’s; the main confirmation for either of those would be a negative diagnosis for bowel issues and a positive reaction to medications that treat them.  In any case, he suspects something I’ll be dealing with for the rest of my life.  Joy.

And finally, on to the headache specialist.  I stopped seeing them a year ago because I tried two different preventative medications and reacted badly to both – sleeping 16-18 hours a day, having trouble doing simple things like feeding myself because I’d get sidetracked somewhere in the process (usually after putting food into the microwave).  Thing is, the headaches have gotten worse again.  I’m now having positional headaches, which scares the crap out of me because I know that can be a sign of Chiari, which is way more common in EDSers than in the general population.  It can also be a sign that the cervical settling I was diagnosed with a bit over 2 years ago is causing problems.  Well, the headache specialist threw in a new possibility – he said I could have pockets of cerebro-spinal fluid developing in my brain, which apparently is also more common with EDSers than the general population.  Aw fuck.  If that’s the case, they have to go in and patch them because they can cause brain damage if left unchecked.  Gah.  Because of this possibility, I have to have a MRI done, with and without contrast.  That’s pretty much torture to me.  I’m mildly claustrophobic, and having my head bound in place and then being slid into a tube that barely has enough room to fit me is pretty horrific.  Worse yet, to do a with-and-without contrast, they have to do one set of scans, bring you back out so they can inject you with contrast, and then put you back in.  It is one thing to deal with being put in once; something about being pulled out and put back in heightens the sensation of being trapped enormously for me.  And of course, for an MRI, you have to stay perfectly still.

They also are having a little trouble with preventatives because of my other conditions.  Migraine preventatives tend to be drugs that were originally intended for other uses that were discovered to have headache-preventing qualities.  They fall into 3 major groups: anti-depressants, anti-seizure meds, and blood pressure meds.  They don’t want to give me an anti-depressant because I’m bipolar.  I’ve reacted badly to 3 anti-seizure meds, so we don’t want to try that route again – no sense beating a dead horse.  Which leaves blood pressure meds…which have the potential of making my POTS worse.  I guess that’s less scary than messing with things that can affect bipolarism because I have a better chance of catching POTS symptoms before something bad happens, not to mention that the gap between theraputic for headaches and theraputic for the original use is wider for blood pressure meds.  That is to say, the level of anti-depressants needed to prevent migraines is closer to the level needed to treat depression than the level of blood pressure meds to prevent migraines is to the level needed to treat high blood pressure.  The really bad news is that they think the main medication I’m on to manage my generalized body pain may be making my headaches worse.  They want me to think about coming off of it.  The idea of coming off of the medication that makes the pain that encompasses my whole body tolerable is enough to make me want to scream.  I have to sit here and try to figure out which is worse: the possibility that my headaches will continue to get worse, or what it will feel like to come off the medication.  Pain is a funny thing; being on opioids is known to make pain worse in some people, so it might not be as bad as I think.  Except I remember what it was like before I got on the opioid medication.  I spent all of my time either at school, doing homework, or asleep, because being awake was too damn painful.  I don’t want to go back to that – it’s a frightening possibility.

Which is to say, this week was full of catostrophic SUCK.  I got answers I didn’t want at every turn.  It sucks up your energy, dealing with stuff like this, as if I didn’t have all kinds of other things eating up my energy.  I’m exhausted and sad and frustrated and angry, and feeling very vulnerable right now.  I feel like I am walking on thin ice, and anything could send me plummeting into the deadly cold water beneath.

In some different news, I am not the only person who has been dealing with sucky stuff lately.  A friend of a friend has had a crisis happen where she cannot get the treatment she needs to be as healthy and well as she can be.  My friend, Sharon of aftergadget.wordpress.com, organized an auction to help out.  There are a variety of things included in the auction, from artwork to services.  Please check the auction out at http://heathersauction.blogspot.com/!

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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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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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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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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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One of the problems with support networks is that the people in them have their own priorities. Now, that’s not anything against them – every person has different priorities from the person standing next to them. Even if you take a couple in an incredibly close relationship, they’re going to put different value on things. That’s the nature of human beings.

The trouble creeps in when the priorities downright clash.

Right now, I’m not supposed to be walking much at all. Not until I get my new knee brace, which should be the middle of next month. It’s inconvenient. It means that I have to use my scooter everywhere, and that’s a bit difficult. You see, I live in a house with 3 steps up to get in the front door. So I can’t just wheel my scooter out the door. Also, I don’t have a trailer or hitch-mounted carrier for my scooter, so to take it places, it has to be broken up and put in the trunk, then hefted out and re-assembled. The scooter breaks down, sure…but even broken down, there’s a 50-lb piece, which is far more than I can heft without hurting myself.

Now, typically, the boyfriend does all hefting of the scooter, and drops me off places. However, the boyfriend’s uncle just died yesterday, and he’ll be driving a couple hundred miles to his family for the funeral. He’ll be gone from Tuesday until the weekend, most likely.

I’ve called friends, and no one is available. I thought I was in big trouble. I really can’t get around without my scooter!

I lucked out this time – my neighbor is willing to give me a hand. We built a ramp a while ago, but it’s too heavy for me to move. My neighbor will put the ramp into position so I can wheel on out. I’ll use public transportation (which includes a longer ‘walk’ than I can do even when my knee isn’t busted, but I’ll be on wheels!). When I get home, my aide will put the ramp back out at night so I can come in (or she’ll break down the scooter and carry it in piece by piece – that may be easier for her, because she’s a small woman and the ramp is 8′ long).

It’s scary, though, when you need help and you go through your support network and NO ONE can help. It’s frustrating! Part of the problem is that when you have a major disability or a chronic illness, your support network is often thin because of the sidelining affect that ablism has on you and, well, we’re often less able to go out and socialize. So you end up leaning on everyone harder than you should. You find yourself begging favors of the same handful of people over and over and over, and you can only hope that you don’t burn them out.

And when you burn out one of the few people who helps you, man are you ever in trouble. So far, thankfully, I’ve been able to avoid asking the same people for favors more than a few times each (with the exception of the boyfriend, who kinda does everything), so I’ve preserved my social network as best I can. That looming threat always worries me, though…the thought of ‘what would you do if one of these people stopped helping?’

One can only hope it never happens.

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While I’m disabled by chronic illness, I have kind of an unusual story for that. My transition from able-bodied to disabled was much more like that of someone who’d been in an accident. Fine one day, not so good the next day, and really awful for the third day…and staying that way.

I went more or less the typical stages of grief, though a little out of order – denial, depression, anger, and finally moving on to more-or-less acceptance. I really never did much bargaining; the closest I came to that was hope that we’d find the right medication and I’d be cured. Obviously, as I’m writing this identifying as a person with a disability that involves chronic pain and fatigue, that didn’t happen.

I’d had a weird episode of pain in my joints in the fall semester of my first year away at college. It lasted about 4 weeks. We never did figure out exactly what was causing it, except that my anti-nuclear antibodies were up, which indicates some auto-immune action. It went away on my own. Remembering that, I spent the first several months in denial about what was going on, and believing it’d suddenly get better like it had years before. Yeah, that didn’t happen either.

I think it took me 3 months to accept that it wasn’t getting better, and then I went ‘well, if I’m not getting better, I’d better settle in and deal with it.’ That was when I put in my paperwork to get a service dog, though I got my first cane a couple weeks before then. I was still shocked over the whole thing, and some part of me still believed that we’d find the right medication and it’d make me a lot better, even if it didn’t cure me.

I was in such a state of shock at that point that I was perhaps too honest about my illness with people who weren’t prepared for it. I didn’t try to hide that I had severe, constant, unrelenting pain, and that some days I was too damn sick from pain and fatigue to make it to class. That bit me on the ass pretty badly.

I think it took me about 6 months to accept that we could only do so much about the pain. That was when I got put on pain meds 24/7, including an opioid and something to deal with neural pain. I improved a fair amount at that point, and got back most of the use of my hands that I had lost. Even though I accepted that pain relief was only going to do so much, I still hoped for the magic pill cure. It was that first year when I gathered several of my specialists – the neurologist who was investigating what turned out to be a side effect of one of the first medications I’d been put on, the urologist, the gastroenterologist, the pain specialist.

The months after I first got sick, a lot of people I knew started suggesting it was Ehlers-Danlos syndrome. I didn’t realize I was as hypermobile as I am, and I don’t have the classic stretchy skin, so I shrugged it off and decided it couldn’t be right pretty quickly. Silly me, huh?

But it kept being brought up, and as more and more of my body had trouble – my bladder, my GI, so on – I looked at EDS again that summer and I thought ‘it’s possible’. By the middle of the fall semester, I finally decided that it was likely enough to look into a specialist. My GP had a similar reaction to mine at first, though she thought that the distinctive facial features associated with vascular EDS (the rarest of the 3 most common varieties) was seen in all people with EDS, and I definitely don’t have it. One of the features is thin lips, and I have rather full lips, so it wasn’t a match. She also didn’t realize that I have grey scelerae (that’s the whites of the eyes – in people with EDS, they are often blue or grey, because our scelerae are thinner).

That summer, my neurologist wrote for a permanent placard on the same visit that he told me whatever I had was not neurological, and he was sorry he couldn’t help me.

I got sent to a rheumatologist somewhere in that first year, and he couldn’t tell me much except that my troubles weren’t auto-immune. The neurologist and rheumatologist both not being able to help was both frustrating and hopeful – it said I might still have something a pill could cure, instead of something progressive.

I think I stopped believing there would be a miracle cure only when I was finally diagnosed in the winter of my second year of law school. I can’t tell you how crushing it was to have that be true. On the one hand, I was relieved because it meant I didn’t have something that was progressive to the point of killing you, and some of the possibilities we went through were pretty damn scary. On the other hand, I was disappointed because I knew that bracing and improving my pain medications were all we could do – I’d always have this, no matter what medications I took.

I suppose I started identifying as having a chronic illness very early on. Within a couple of weeks of the start of the chronic pain and fatigue, I figured that having this twice (remember, I had an episode of joint pain and fatigue my freshman year of college) probably meant that there was something bigger going on. I don’t think I started identifying as having a disability until about a year after I’d say I developed that disability. I wasn’t certain it was permanent until after I went a couple hundred miles to see a doctor who was well-known for contributions to the understanding of EDS. (Incidentally, I saw someone in my own city first who was supposedly an expert in Marfan’s and EDS, who misdiagnosed me and treated me badly.)

If you were to ask me to give a single adjective to describe becoming disabled, I’d say it’s frustrating. Yeah, there’s a lot of grief involved too, but to me, the single greatest emotion I have towards my disability is frustration. Frustration that I’m injured again. Frustration that I’m missing things due to pain and fatigue. Frustration that I can’t do things I used to. Frustration with each new piece of adaptive equipment I need to get along. Frustration with the weight caused by my illness and the medications that treat it. Frustration with society. Frustration with doctors and the medical system. Frustration with my health insurance. A ton of frustration, which seems to be more like a landslide in that it keeps growing as it goes along. A few stones at the start; a cataclysmic crushing weight of rock and earth at the bottom.

For me, a great deal of what is necessary to be happy as a person with a disability was learning to deal with that frustration. It still hits me now and again, but not like it did that first two years. It really did take me two years and developing a better support network to get to the point where I didn’t want to throw things most days.* It took me that long to find a place where I really could deal with my disability and the process of becoming disabled without being upset all the time, instead of just putting up a front. It probably didn’t help matters any that while my physical disability was first happening, my bipolarism wasn’t managed well.

Two years. Sometimes it seems like a blink of an eye; other times, it seems like a lifetime. It certainly seemed like a lifetime when I was living with it! At the end, while I’m still not thrilled about the level of disability I’m living with, I’ve made my peace with it. I no longer feel as isolated, as frustrated, or frankly as disabled. I’ve figured out how to make things work, and I’ve accepted that mobility aids (including my furry four-legged one) are part of my life. I do still wish that I was able to do more than I currently can, and I do still miss things like dancing and swordfighting, but I’ve filled my life with other things.

I don’t know if there is some sort of ‘average’ time it takes to get to a good baseline of emotions when you get a disability. I’ve known people who have had disabilities for decades and are still bitter about it; I also know people who seem to have this infinite serenity about it from the start. I do know that unless you’re one of those rare people who really is utterly adaptable and completely unflappable, you have to learn good coping techniques and you have to learn to live a different life than the one you led before. Those are both hard things to do, and damn near impossible to do without support. I think support – friends and family, medical, mental health, and services – are absolutely vital to learning to live a good life with a disability. I think that a lot of people who get stranded somewhere harmful to themselves or others don’t have the kind of support to make the transition, or they lost the support they needed to stay in a good life. Either way could make you pretty bitter and angry, I’d guess.

*Don’t worry, I threw empty pill bottles at my open closet, so the bottles hit my clothing and dropped to the closet floor. Except for the one that bounced off the edge of my closet and hit me in the forehead. Yeah, that was embarassing.

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Now, this is a post that a couple of people have been asking me to write since the day I started this blog.  How does sex work when you’ve got a body as unpredictable and undependable as mine?

Well, I have to start by saying, sex only works with an understanding partner.  A partner who wasn’t willing to listen to me could do me a great deal of harm during sex – dislocated joints, torn tissue, sprains and strains, so on.  Shoot, even with a guy who listens well, there’s a risk of doing all of that, but at least a guy who listens well will stop when I get injured and try to help me put myself back together!  An understanding partner also hopefully doesn’t get frustrated when we start and have to stop because of yet another injury.

Right, so we have a partner who’s going to listen to what I say and be willing to accomodate himself to my needs.

Next, the set-up.  That starts with the bed.  No, seriously, the bed matters.  A bed that’s too soft means that the only position possible is missionary, because if I put a hand or knee or…whatever…down on the bed, the pressure gets localized too much.  If I put a hand down, it means that my wrist gets bent back because the heel of the hand sinks down while the fingers don’t.  A bed that’s too hard means that no matter what position we try, I’m going to be hurting afterwards, but particularly bad would be anything that has me on my knees, because my kneecaps can’t take much pressure.  Next come the pillows.  I need a lot of support to be able to have sex.  If it’s missionary position, I need pillows under my knees so that my hips aren’t flung all the way open (or the risk of sublux goes WAY up).  If it’s doggy style, it’s got to be modified, with pillows under my hips and me reclining down on them, because otherwise it’s too much pressure on my shoulders and my hips.

Which kind of leads on to position.  Missionary is the easiest on me, because it means my back is fully supported and my weight is distributed on a large area (as opposed to, for example, woman-on-top, where the weight is all on your knees).  Next I suppose would be a modified doggy style, with pillows under my hips and me resting my weight on them, instead of all on my hands and knees.  Woman-on-top hasn’t been possible for a while, because it is really easy to sublux a hip in that position.  Spooning depends very much on the proportions of myself and my partner – I was only able to get things to line up properly with one ex.  Man sitting up and me sitting down facing him (usually done in a chair, but can be done in bed) presents similar problems to woman-on-top with the added problem (if on the bed) of getting into the position – it’s hard to get my legs to move that way!  (which is a shame – that used to be one of my favorite positions)  In that position, it’s mostly my own enthusiasm that is the danger.

The other thing that comes into play with EDS is fragile tissue.  When your tissues are fragile and tear or bruise easily, it becomes that much more important to have a lot of foreplay and a good lube.  If my partner and I get a bit too eager and hurry things along, I’ll be sore for days because I’ll bruise inside.  I can’t use spermicidal lubes because they increase the likelihood of microtears.  For me, that means irritation and burning and itching and tenderness for days afterwards.  The first time that happened, I completely freaked out and was convinced I had just gotten an STD!  It took a rather panicked trip to the doctor to ease my mind.  The issue with spermicides is frustrating because so many condoms are packaged with spermicides already applied to them.  That’s part of why I always buy my own condoms.  Personally, I don’t do well with most glycerine lubes.  They get sticky as they dry, which can mean small tears in the tissue.  They don’t last long enough, which again can mean small tears.  I tend to use silicone lubes, which are much better on that count.  Oil-based lubes are also okay, but you have to be careful with them because they are not compatible with condoms.  Speaking of condoms, I’m not especially compatible with condoms.  They cause more friction, which with my delicate tissues can mean injuries, especially if my partner has a lot of endurance in the sack.  It’s very, very frustrating when you’re in a relationship where you’ve just started having sex and want it all the time but can only actually have sex once every 3-4 days.

Now, one of the particular issues I have is the combination of my preferred kinks with EDS.  I’m a relatively vanilla girl, which is probably for the best with my body being what it is!  There are really only 3 strong kinks I have, and only 2 really get hazardous with EDS.  The easiest to deal with is being blindfolded – it makes injuries from accidental collision with a partner a bit more likely, but it’s really not all that dangerous.  I also like being tied up/cuffed/pinned down.  This one causes all kinds of problems.  Before I learned not to fight the ties, there was an evening where I dislocated both shoulders.  I’ve also put out my wrists more times than I can count.  Part of what I like about being tied up is that sense of not being able to get away!  Not being able to fight them without injuring myself takes that down a notch, because I always have to be mindful of my joints when I’m struggling.  I definitely can’t ‘fight back’ as hard as I’d like to.  The third issue is that I like ‘sharp’ pain.  That is, I enjoy some whips and being spanked.  It’s definitely more a mood thing than the others.  The main thing that makes this one difficult is the level of control my partner has to have.  It is difficult to trigger the sharp snap of pain on the skin without bruising the flesh beneath, especially with someone who bruises as easily as I do.  And I HATE being bruised.  In the BDSM world, when you talk about implements, you talk about ‘sting’ and ‘thud’.  ‘Sting’ is exactly what I like – that sharp sensation on the skin.  ‘Thud’ tends to refer to harder impacts against the flesh, often leading to some bruising.  Personally, I prefer something with almost no thud, all sting, but used gently enough not to break the skin.  If things are done to my liking, within an hour or two there should be no marks.  Less if it’s done in the shower, typically.  The boyfriend, being a gentle soul, was rather appalled by the idea of striking me when it was first brought up, but he agreed to try it and found that while he doesn’t enjoy the act of making contact like that, he does very much like the way I respond.  I think he feels much the same about blindfolding and tying me up – it’s not that he enjoys being in control like that, it’s that he enjoys how much pleasure I get from not being in control.  It’s a set-up that may sound rather odd, but it works for us.  I get my fill of my kinks, and he gets off on how much I enjoy said kinks.  (On a side note – I am very, very grateful that my kinks are relatively tame.  I think if I was into more pain, or more submission, or more exotic kinks, the boyfriend would be so turned off by the idea that he wouldn’t even want to try it.  What I like is close enough to vanilla that he was at least willing to give it a go!)

Um, I think I covered everything there.  Please do feel free to ask questions, though I’ll admit I may not answer them if they make me…uncomfortable.

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