Well, at least there’s news, at last?

Most of you who read my blog have done so for quite some time, and I’m sure you’ve noticed that in the past couple years, I’ve been much more quiet than in the past. I’ve been dealing with pain and inflammation and mental fog and all kinds of fun new symptoms while desperately trying to finish law school. It’s been a rough two and a half years, since the ‘new’ symptoms started.

For a while, my doctor and I thought it might be Lyme Disease. I responded positively to the right antibiotics, and very swiftly. We did several courses, and things improved a bit each time, then got worse again. Despite multiple blood tests, the only things that ever showed up were markers of increased inflammation.

I got frustrated with the status quo this summer, and asked to be sent to the rheumatologist again. If it was Lyme Disease, we had treated it pretty aggressively, and yet I saw no improvement. Besides that, I started having symptoms that are not as much associated with Lyme Disease. For example, I have psoriasis on my scalp, which has been there for most of a year, though it was only diagnosed this summer – I just kept forgetting to ask about it after the dandruff treatment did nothing to help.

Well, we have a general answer now. I probably never had Lyme Disease, but instead have had an auto-immune disease at sub-clinical levels. Basically, that means that my immune system has been attacking me, but not in a way that showed up in blood tests. I got the first positive auto-immune test – an anti-nuclear antibody or ANA test – about two months ago. About a month ago, whatever is going on kicked into high gear – my hands puffed up so that there were days I couldn’t even hold a fork, my feet were bad enough that some days I couldn’t walk, and boy has it been awful. The rheumatologist gave me a steroid to bring down the swelling, and then a week later had to increase the dose because the inflammation rebounded. My hands are now back to about where they were before this latest flare, though I’m still on the steroid so they’d definitely be worse without that. I’d like to eat the whole world and drink a lake. I also have a new found sympathy for menopausal women who complain about hot flashes. I was pretty dismissive before (internally! I’d never say such a thing to someone complaining about them!), but now I’m waking up every hour or two at night because I’ve sweated so much that the sheets are plastered to me and I’m so miserably hot from the waist up – and that’s with the apartment turned down cooler. It took me a week or so to figure out how to more or less balance things; until then, I was freezing from about mid-thigh down and frying on at least my head and often all the way down to my hips. On a good night, it’s only my head that gets hot, so I put a blanket over my body and turn the air down cold and then I only wake up a couple of times. On a bad night, I’m alternating between frying and freezing, and it’s making me groggy during the day.

At this point, there are definitely forerunners in the list of conditions that I might have. Psoriatric arthritis, rheumatoid arthritis, Sjogren’s Disease, and Mast Cell Activation Disorder/Disease are the current hottest suspects, as I understand things, but frankly none of the auto-immune diseases are entirely outside of possibilities. MCAD in particular has been observed to happen at higher frequencies among people who have EDS, so I suppose that may be the most likely, though it’s much harder to test for than the others. The second panel of more specific blood tests is due back any day, so hopefully I’ll have an answer soon. Unfortunately, the answer may well be that whatever I have, while it has been identified as auto-immune, can’t be identified more specifically via blood test. I pray that with an answer will come a more direct treatment. While the steroid is helping, and while steroids are often used in bad flares of rheumatological disorders, they are treating a symptom (inflammation) instead of dealing with the immune system itself. (Technically, MCAD seems to be classified as a hematological disorder rather than a rheumatological disorder, so I may need to be sent off to a whole different specialist, and people who treat MCAD are harder to find than people who treat what are more or less bog standard rheumatological disorders.)

I’m still feeling emotionally blitzed. On the one hand, there is a chance – an admittedly very small chance, but a chance all the same – that the past 7 years of health issues may all be linked to this, and thus may all markedly improve given effective treatment – I might get some semblance of the old Kali back, and the old Kali’s LIFE back. On the other hand, this has been going on for at least 2 1/2 years, and on some level I’m very angry about how long it’s taken and how little my doctors have been able to do to help me. Part of me feels like someone should have figured this out long before now – if the drugs to treat auto-immune disorders were not quite so powerful, I would have pushed for a trial of one long before now, because at least it would clearly eliminate auto-immune conditions, which can run at levels a blood test cannot detect for years, and may very well have done just that in me. I’m worried that the blood tests will be inconclusive, which means the possibility of less pleasant tests like biopsies to look for Sjogren’s. And I’m tired. I’m tired of it being one new thing after the next, tired of being sick, tired of being sickER, tired of the progression, tired of having to watch new symptoms blossom and often be present for long periods before anyone does anything effective about them. I’m frustrated with the whole medical industry, which I know is not completely fair to particularly my GP, who is a very caring individual who has invested a lot of time in learning to treat a patient as complex as I.

Hopefully, I’ll have another update for you all soon with an answer, and then we’ll get to start the treatment merry-go-round. Most medications for auto-immune disorders come with heavy side effects – oh, certainly, nothing to compare to the damage and pain of letting the condition run unchecked, but unpleasant all the same. I’m not looking forward to that part of a potential diagnosis.

And I’ve got to manage to hold things together through December. This is my last semester of law school, and at the end of this I’ll finally have enough units to graduate in May. Finally. It will have taken me twice as long as the average student, but finally I’ll be there. Then…well, I guess I try to open a law firm, which is its own terrifying adventure – new attorneys almost always join other firms, for good reason, and I probably won’t even have the money to hire a paralegal to help make sure things get done right. But that’s the next chapter, right? And hey, if my health evens out…maybe I can find a small firm that is willing to take on someone whose law school career doesn’t look all that great, so that I don’t have to figure out every step of this alone.

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Not thankful.

A great many people take Thanksgiving as a time to reflect on what they are grateful for, and how great their lives really are.

I’m not.  It’s the end of Thanksgiving weekend, and I didn’t get more than a couple hours worth of schoolwork done all weekend when I was hoping to get caught up.  My concentration is shit and I keep dozing off over my books.  I may not be allowed to take one of my exams because I missed a ton of class due to this muscular whatever the hell that seems to be tangled up with the arthritis.  While I feel better once I’ve been awake for about 3 hours, that’s longer than I can manage to be awake before class (that is, I can’t wake up 3 hours before class).  Were I to try it, I’d have to stay lying down because I’ve had a very limited amount of sit-up time, and I’d fall back asleep.  I did try once.  Fail.

I’m tired.  I’m sick – I have something that has completely stuffed up my head and blocked up my ears, and I have a GI bug giving me diarrhea.  Monday, I fainted and we don’t know why – I wasn’t having any dysautonomia/POTS symptoms, I just turned my head to the right, had shooting pain, and woke up slouched against the couch.  On Tuesday, Hudson did the unbelievable – he pooped in the building where my physical therapists’ is.  My sleep schedule is utterly and completely screwed up.  I keep forgetting to make the phone calls I need to make to get doctor’s apts and other things set up.  Not getting those appointments means I don’t get help with the things that are causing problems.  It’s a lovely catch-22.

The arthritis-of-some-kind is improving dramatically, but the improvement in my joints has made something else very clear.  I think at the beginning, about 1/2 of my pain and loss of motion was muscular; at this point, I’d say that’s 3/4 of what I’m experiencing.  I suspect I couldn’t separate the two out because with EDS, the pain is as much in your muscles and surrounding ligaments as it is in your joints themselves.  And it doesn’t improve.  Heat makes it very slightly better, motion starts as agony but eases into more comfortable motion.  Rest just means that I’ll be in pain when I start moving again (though if I do not rest and try to move all the time, the result is even worse).  I don’t really know what to do about all of that.

I forgot to get some critical paperwork filled out, and the deadline was 2 weeks ago.  I’m not sure if they’ll be able to work with me.

I had this dream several weeks ago, that I was diagnosed formally for the arthritis.  I quit law school, and between us my fiance and I put together a shop where I could do just about anything artistic I wanted.  It was quite a nice dream.  The best part was that I no longer had massive deadlines hanging over my head.  I’ve fallen behind on everything and blown every deadline since this all started in March.  I’m tired of always waiting for someone to get upset with me because I’m not doing enough, not present enough, et cetera.

It’s funny, I dream about not going to law school and I’m not sure I want to finish, and yet my first response to an email that suggested I might not be allowed to finish a class (and possibly more than one)  was to be so deeply upset that I was wildly nauseous and very upset.  I am less upset now, and the nausea is mild compared to how it was, but I still am loathe to accept an external force causing me to quit rather than choosing it for myself.  Because I’ll admit, it is a possibility.  It’s just not one I like much when I don’t have a choice, and when I have gotten So Damn Close to finishing law school.

I’m not saying I don’t have things to be thankful for.  I do.  I’m just refusing to be a Pollyanna and pretend that those things are in and of themselves enough to make life all good right now.  My fiance and my dog are wonderful, my lawschool has been pretty good about working with me, I have health insurance and a roof over my head and a car that functions, and all of these are good things.  Just life as a whole is…on the rough side right now.

Bleh.  My stomach is roiling again, and hte muscles of my arms, legs, back, and abdomen all ache and hurt.  This kind of pain makes me think of over-twisted rope, ready to snap.  *sigh*

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Test One-two-three (anything but that!)

(Why yes, that title is a Rent reference.  I ❤ the show and the movie)

I have medical testing coming up that I am not looking forward to – some because I think it will be unpleasant, some because there are no good answers.

The one I expect to be painful is an ultrasound of my hands.  I remember how firmly they press on say your abdomen for ultrasound imaging; that kind of pressure on my hands would be AGONY.  I suppose there aren’t really good answers on this test, now that  I think about it.  Either they will find inflammation that backs up the theory that I have something like rheumatoid arthritis (RA), or they’ll decide there isn’t inflammation there and we don’t know why my hands hurt nor why they look swollen.

I’m supposed to have an MRI of my brain done, because my former headache specialist worried that I might have pockets of fluid building up in my brain, due to the kind fo headaches I get on a near-daily basis now.  Again, there aren’t really any good answers – if nothing shows, then we have to keep investigating to see what is causing the headaches.  If it does show, that means brain surgery.  And oh yeah, having a MRI is no walk in the park.  This one will be with and without contrast, so they will fix my head in a specialized vice that partially blocks my vision, put me head-first into a long narrow tube I barely fit in, and then there’s all the noise and the vibration (which hurts a lot!).  As if that wasn’t bad enough, they’ll pull me about 2/3 of the way out so they can put in an IV and inject in the contrast material, then put me back in the tube.  I’m mildly claustrophobic, and both the head vice thing and taking me out and putting me back in considerably aggrivate the way I feel about it.

Then there’s a rotational CT scan of my neck and where the head meets the neck.  I have symptoms that could match up to craniocervical instability (CCI), which is vastly more likely in people who have connective tissue disorders like mine.  If I don’t have CCI, then we have a question about what is causing a lot of symptoms that include pinched nerve symptoms in both my arms.  If I do have it…whoa.  Surgery, but that surgery might take care of a slew of issues that have affected me over the last 4 years.  However, I won’t be able to get the botox injections into my neck that they think would stop my migraines because my head would already be unstable enough on my neck that they would be worried about destabilizing it more.  The test itself isn’t too onerous, at least – I turn my head all the way to one side and go through a mechanical doughnut rather quickly, then turn my head to the other side and go through it again.

I also need an MRI of my mid-back to see if the maybe-RA is attacking my spine or if the pain is coming from something else.  This is another relatively painless test, but the results are something I’m not sure I want to know.  If it is the maybe-RA, I suppose they’ll treat more aggressively.  If it isn’t…well.  We have to figure out what’s causing new back pain, how and why, because this back pain is neither normal nor tolerable for me.

I don’t really know what I want at this point.  I am tired of feeling like crap, so I would like to feel less like crap, but I don’t know what test results or medications will offer that solution.  In the meanwhile, I guess I keep on keepin’ on.  It starts to feel a bit surreal sometimes, and other times it feels like I keep going out of habit or lack of palatable alternatives.

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Working on Chronic Illness Time

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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They almost look like fingers again!

One week on the new anti-inflammatory and my hands are starting to look like my hands again.  (I was going to say they were starting to look like normal hands again, but my hands are built so slim that they probably looked more normal when they were swollen!)

Thankfully the pain is down significantly in my joints.  My feet still start whining if I stand on them for more than a minute or two and my hands are quite displeased with how long I was typing this evening, but on the whole I am feeling better.  My hip is now spending more time settled properly than it is subluxed, and my knees only feel like someone took a baseball bat to them when I go up or down stairs.

It’s a real relief.  It doesn’t make all the maybes about what’s going on feel any better, but anyone who has lived with significant pain will tell you that being in severe pain that isn’t stopping is really terrible for your morale, especially when you don’t know why you hurt.  Either part – the uncertainty or the pain – is one hell of a lot easier without the other.  I wouldn’t say I’m optimistic at this point, but it would be fair to say I’m not feeling quite so glass-half-empty.

It’s not half full, it’s not half empty.  Right now, my glass is just…half.

I can live with that.

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I’m sorry, we’re all out of good answers

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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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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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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I am not your metaphor

This is something that has bothered me for a long time, and actually led to one of the very few spats between the boyfriend and I (quickly mended, once we both cooled off a bit).  I really hate the use of disability-based metaphors.  Hate them, hate them, hate them.  I believe that they’re part of what makes disability such a fearful, distorted, tragic cloud to people who are able-bodied.

It’s all well and good to say they’re bad, but I think it makes more sense if I actually go through some of the more common disability metaphors so you can see what I mean

Crippled – this one gets used ALL THE TIME.  The city was crippled by an unexpected snowstorm.  The political entity is crippled by corruption.  So-and-so was crippled by a powerful emotion.  The poor are crippled by their lack of savings.  I’ve even heard references to people being crippled by scruples.  Here’s the thing – crippled has a pretty specific physical meaning – it’s a physical disability, usually related to walking.  What being a crip really means is that you have to get creative about how you do things and how you get around.  It doesn’t mean that you’re unable to do things!  I think these metaphors that tell us an entity or person is incapable of doing ANYTHING (or at least, anything useful) really emphasize that being crippled is being useless.  And as someone who identifies as a crip, I can tell you I’m damnwell not useless!  I do a great many things, including my work at a legal center for people of limited means and my disability advocacy, that I think have a great impact on the world.

Blind – I bet you can’t count the number of times you’ve heard this one –  blinded by viewpoints, blind to miss facts, blind to misunderstand intentions, blind to misread things, so on.  It’s definitely a favorite metaphor.  I count short-sighted in the same category, as short-sighted originally means nearsighted (as in, someone who can only see the shorter distances, not the longer ones).  Similarly, long-sighted originally means farsighted (as in, someone who can see things at greater distances, but not up close – someone who needs reading glasses).  We use sight metaphors to a ridiculous extent in our lexicon.  And through all of these, we imply that people who are blind or nearsighted are incapable of planning, unable to comprehend the information available, so naive as to misunderstand the motives of others, and similar issues that have NOTHING to do with sight!

Retard/retarded – (I am using the whole word only for clarity; I’ve written other social justice related pieces about how awful and hurtful this word is.)  Just mentioning this one makes my blood boil, in part because we generally don’t use this one as much of a metaphor.  When we say someone is a retard, we mean that they have so low an IQ as to fall into the category that used to be labled ‘mental retardation’.  We mean they’re stupid, they’re foolish, they’re naive, they’re incapable…but mostly that they’re stupid.  Plenty of people will argue that the way we use the word today doesn’t tie back to those roots, but think critically about the last time you heard someone use that word – I bet it was to belittle someone’s intelligence.

Lame – I’ll admit, part of my hatred for this one stems from its use in my own family, and finding it over and over again in my own language.  Lame means having an altered gait, typically a limp.  If you don’t believe me, ask someone who deals with horses what it means for a horse to be lame.  Now we use it for all kinds of different meanings – stupid, foolish, clumsy, easily injured, ridiculous, unfair, etc.  A lame call in a sports game, a lame excuse, a lame-o who just doesn’t get it, etc.  Notice how having an altered gait – like me – suddenly gets turned into all these nasty negatives?  Listen for people using the word lame around you.  I bet they aren’t using it to literally mean a limp, and that what they’re using it for is more negative.

Mad/crazy – Here’s one we use to a ridiculous extent in our language.  I’m crazy-busy.  Work was crazy today.  …and then she just went crazy!  I am just crazy about this designer.  You’re driving me crazy!  The way they treated her was just crazy.  That idea is just crazy.  Political opponants are crazy.  (most of which you can substitute mad for crazy and get the same meaning)  Yeah, that’s not exactly the same as mad or crazy meaning someone who is experiencing psychosis (a break with reality) or neurosis (not a full break with reality, but having an altered relationship with reality).  These words originally mean someone who has some kind of mental illness, and are being reclaimed as such.  Most uses of crazy are dismissive, ways to marginalize people and ideas.  Using them for negatives has obvious problems, but what about positives like ‘crazy about this designer’?  Well, it still means ‘overly’ or ‘too much’ – when we say things like that, we mean ‘I’m excited about this designer beyond reason.’  See how even that seemingly positive thing slides around to a negative?

Look, using disability as a metaphor tends to come from one basic problem: linguistic laziness.  There are SO many other words that can be used!  Foolish, ridiculous, thoughtless, senseless, hampered, troubled, restrained, naive.  Just to name a few.  When you use disability metaphors, you hurt those of us who actually have disabilities.  I am NOT your metaphor.  Find a new one.

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Disability services – hit or miss

I feel like after my last post about the struggle to get a class moved to a different room, I needed to talk about how my law school has handled my disability as a whole.

Now, one of the interesting things I have to point out here when talking about how my law school handles my disability is that my law school is semi-autonomous from the greater university.  It creates an…interesting…situation for disability accomodations.  Not bad entirely; it’s had pros and cons for me.  The way getting accomodations works for me is like this: I bring my doctor’s letter to the law school’s disability coordinator, who we’ll call W.  The disability coordinator faxes the letter over to the university’s disability resources center. ( I officially have a file there and a counselor, but I’ve only really interacted with her over one issue.)  The disability resources center sends back its evaluation of what accomodations I’m to be accorded.  W and the law school student resources secretary then arrange for the accomodations.

Now, it’s definitely had upsides for me.  When I first came to law school, I was sick with a mystery illness that was causing me extreme fatigue and pain.  I didn’t get any answers on ANYTHING until January of my first year, so that first semester, I was operating completely on my own.  I had no accomodation letter, no documentation to suggest I needed assistance, nothing.  Despite the fact that the Disability Resource Center could do nothing without documentation, because it’s a semi-autonomous entity, the law school was able to give me a couple of accomodations: they gave me a keycard to the accessible door, they retroactively reset my status to part time so I didn’t have to accept ‘Withdrawal’ or Fs on my transcrips, and they arranged for me to have extra test time and a little room to myself.  These may sound like small things, but especially that retoractive part-time status really helped me that first impossible semester of law school and fibromyalgia.

On the whole, the set-up has been convenient to me.  The law school is in 2 buildings, one short block apart.  I know exactly where W’s office is.  I don’t have to try to make it over to the Disability Resources Center, which is halfway across campus.  W is in general a very nice, very helpful person, as is the secretary for that office.  The dean of students has been willing to get involved, which has mostly been a very good thing for me – it was her influence that got me changed to part-time retroactively my first year, and her influence that got me a mentor when I struggled academically.

It’s not perfect.  In my first year, I had an incident with a professor.  She said something that I read to be making fun of the way I walk because of my disability, because I was late returning to class after a break.  She never did that to anyone else who was late returning.  I went to W and to the dean of students, and crying I told them about what had happened.  What she had said.  The way she had stood there in silence, with the whole class’s attention drawn to me, as I hobbled with my pained little half-steps to my seat, before she resumed her lecture.  The another student in the class who was a person with a disability completely agreed with my reading of the situation – that she had made fun of my disability and deliberately subjected me to the staring of my classmates, who were already viciously unfriendly to me because of the way my disability made me different and because I knew too much.  My counselor/case manager at the disability resource center was appalled by what happened, and said that she would love to write a letter to the professor detailing the problems with what she had done…except that the relative autonomy of the law school and the existance of a disability coordinator there meant she’d be doing some serious stepping on people’s toes.  People whose cooperation I needed for my accomodations, for assistence with professors, so on.  So I had to let go the possibility of a strongly worded letter that took my side, because offending the people whose help you need is never a wise idea.  The dean of students eventually told the professor how I’d taken things, and the professor told me she hadn’t intended things that way.  I still don’t believe that and now, nearly three years later, I still avoid her – step out of hallways she’s coming down, avoid meeting her eyes and opening the potential for a conversation, moving away from her at Women’s Law Caucus events that we both attend.  It’s hard to forget people who have held you out for social opprobrium and shame.  People who mock the way you move because of your disability.

Anyhow, I’m sorry for that…sidetrack.  It’s hard to explain how badly I felt that I’d been failed by W and the dean of students at my law school without going into the details about what happened.

That January, I finally got an accomodation letter and we started playing with ways to help me with one of the issues I had an accomodation for.  To their credit, they were willing to try several different approaches I suggested before I decided that the one they’d suggested to begin with was going to be the best.

Since then, I’ve gotten a handful of new accomodations, and things have been gracefully managed on everything but this latest snafu with the classroom change.  They haven’t been able to do anything for me about professors’ attendence requirements as long as those requirements don’t exceed the 80% required by the American Bar Association (which has withstood challenges under the Americans with Disabilities Act), and I’ve yet to see a professor who required more.

To be honest, on the whole they’ve been thoroughly helpful and friendly, and a good place to go for advice.  I hate to think that you all have this image of a difficult and uncaring office because of this latest exchange.  To be honest, this latest exchange seemed quite out of character for them, which is part of why it upset me so.  They’ve done a good many things that were inconvenient for them on my behalf, and to have them suddenly react as if what I wanted was a nuisance and an inconvenience…well.  It was quite an unpleasant surprise.

Edited to add:  I just realized that I had forgotten one of the BIG things that the disability liason and the dean of students had worked out for me.  Right before the fall exam period for my second year, I fell and sprained my back.  Because of that, I couldn’t sit up for more than an hour or so at a time, and then needed a significant amount of time lying down flat.  Even that hour or so was only on my extremely comfortable couch – anything less than that, and I’d get half that time.  I couldn’t get set up in a position where I could have my laptop on the bed with me without causing at least as much pain as sitting up with it.  So they allowed me to take exams without time limits, and from my own home.  It was an enormous break in protocol, and it was all that allowed me to take my exams that semester.  They had no obligation to do such a thing, since it wasn’t a permanent state of affairs, but they did anyhow and I am very grateful for that.

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