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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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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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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The difficulty with support networks

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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On becoming disabled…

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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Sex and Disability

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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From many small things, a bad day is made.

Today is a devil-is-in-the-details sort of day.  You know what I mean, right?  Where theoretically it all looks fine, but when you get down to it, all kinds of little things go wrong.

I woke up 15 minutes before I needed to leave for physical therapy.  That’s normally plenty, since I just toss on a pair of shorts and a tank top, cram some breakfast into me and the dog, dress the dog, and head out the door.

It wasn’t enough today.

First off, I woke up with my neck and shoulder so cramped that my shoulder was almost touching my ear.  It took me a good 5 minutes just to that worked out enough that I could manage to drive.  It hurt like hell, and I was caught between needing to get moving pronto and needing to be gentle enough that my physical therapist could still work on the muscles in my neck.

What do you do with 10 minutes to get ready?  You mutter at yourself, throw your clothing on, stumble down the stairs, dress the dog, and then realize that your keys are lost.  Crap.  5 minutes later, I discovered that the couch had eaten my keys, but not in the usual place it eats things.  I promised the dog I’d feed him when we got to physical therapy, crammed a poptart in my mouth, and scrambled out the door.

I would have been on time.

Well, if not for the workers repainting the road.  It took 45 minutes to move 1/2 mile.  The freeway was at a stand-still 1/4 of a mile before the exit, and I was baffled.  This just doesn’t happen, especially not for such a length of time.  Maybe there was a car accident, I thought.  I eventually got up to the end of the off-ramp, where they were doing the painting, and I swore a blue streak.  If they had put signs up, I could have avoided this exit and gotten off at the one before and saved myself 30 minutes at least.

So, 45 minutes late for physical therapy, I get parked, explain the electronic meter system to a guy who is staring at the pay station looking bewildered and intimidated, pay for my time and get my stub to put on my windshield, and then realize that I left the dog’s breakfast at home.  Shit!  Double shit!  Agh, my poor long-suffering Hudson.

My physical therapist is a wonderful, wonderful man.  He’s a great PT, for starters, but he’s also incredibly accomodating.  He managed to squeeze me in around another patient, letting one of his assistants supervise me doing the exercises on machines that I needed but doing all the body work himself.  That man has amazing hands.  A-freaking-mazing hands.  He manages to tease out tension with almost no pain when I or the boyfriend would put me into tears to get the same result.  We talk while he works, and among other things I brought up the fact that I miss roller coasters and was wondering if he thought it’d be safe for me to ride on them, if I wore a soft neck brace.  We talked about what kind of rides I should probably avoid (sharp lateral motions, or rougher rides like wooden coasters), but he agreed that it would probably be safe for me to ride the kind of roller coasters I like best, the big aggressive fast looping type.  Aw yeah.  Pity for the boyfriend that he’s not crazy about those, aheh.

Right.  So now it’s 2:00 when I’m finishing up instead of 1:00, because of that damn traffic jam and because it takes a little longer to be seen when you’re being squeezed in.  I feel really, really bad at this point, because the dog should have eaten at 11:30 when I got up.

So we need to head home.  On a Friday of what promises to be a scorcher of a summer weekend, I’m NOT about to risk the freeway after noon.  I drive past the onramp and feel justified by the traffic I see building up.

The only trouble is that using streets rather than freeways takes a whole lot longer.  50 minutes instead of (ideally) 25.  So by the time I get home, I’ve been driving for a total of 2 hours and 15 minutes, and I don’t take driving well.  It stiffens up my back and makes me soooore.  And oh man am I exhausted, ’cause I slept badly with my boyfriend out of town.

I get home, undress the dog, finally feed him (poor pooch!), let him out to pee, and damn it I’m awake again so I can’t even go back to sleep.

And this is the point where I find out that shit is going to hit the fan this weekend.

When my boyfriend took this out of town job for the next 3 weeks, he was told it would be Monday-Friday, that he didn’t need to be there on the weekend, and hey, the pay is great.  Well, it really is 3 1/2 weeks, because he had to go in on Thursday of this week and be there today, and for chunks of Saturday and Sunday.

Saturday and Sunday when he’s supposed to be driving me to service dog classes.  Classes I can’t miss or I risk losing Hudson.  You see, we are required to attend 6 classes during our first year.  My first year with Hudson was rough as hell healthwise – there were the months when I was having maybe-they-were-seizures, there were multiple ER trips that interfered with us getting to classes, there was my schedule being less than ideal making us miss classes, and oh yeah, there were migraines.  So I missed almost all of the opportunities to take classes.  And thus, here I am, just over a month from when we must have our classes done by, with only 2/6 done.  So I somehow have to make it to 4 classes.  And I’m dealing with POTS and aggressive summer heat.  And the service dog classes take place an hour from here.  And with the exception of the classes on the weekends, they last all damn day.

There are 2 classes that will take place in my city.  One would involve driving to 45 minutes west of my city during the early part of morning rush hour, getting on a train, riding said train for an hour, walking around the city center for 3 hours, and then riding the train an hour back out so I could get in my car and drive back into the city into the teeth of evening rush hour.  The other would involve being out at the zoo all day – a place that has virtually no air conditioning, when I’ve been fainting in the heat.  My doctor nixed the second one, and frankly doing the first would put me at serious risk of getting into a car accident from fatigue.

So the boyfriend is going to drive about 5 1/2 hours tomorrow to get me to a terrible baseball game 45 minutes from where we live because on Sunday, his required chunk of time is going to coincide with my class.  So on Sunday, I MUST be able to drive an hour there, be there for 2 hours, and then drive an hour back.  The sum of this is that I need him to drive me tomorrow so that I hopefully will be able to make the drive on Sunday.

And all of this is happening while I can’t get a signal on my phone in the house.  Texts are unreliable, and calls are unheard of.  I eventually figured out a way to fix it, but this was after hours of worry and frustration, and about 2 days of not being able to get or make calls.

I called my doctor to ask about possibly adding a medication to help with the POTS, since the gatorade was only helping under certain situations and not in others.  Well, my blood work is back, and the news isn’t good.  My thyroid is apparently very low – low enough that it could be causing some of my dizziness, fatigue, and near-fainting.  I need to start taking calcium supplements, which may be adding to the problem and could be behind the mysterious muscle cramping I’ve had lately.  And the real humdinger of the whole thing: my blood sugar is high again, and has been high every time it’s been tested in the last year.  Which means I’m probably pre-diabetic.

This is worse news than it appears at first.  For those of you who know diabetes, you see that and think that I need to ease up on the carbs and the sugar, add some exercise, and all will be well.  Here’s the thing: my diet is already pretty restricted from my IBS.  A number of the things you eat to make a more diabetic-friendly diet are things that make my IBS miserably worse: whole grains, veggies, that sort of thing.  And frankly, I’ve needed my easy to digest carbs and sugars.  On bad days or when my reflux is really bad, that’s about all that I can get into me.  On bad days, the fatigue and pain means that I eat what is ready to eat, and ready to eat foods are HORRIBLE in terms of carbs and sugar.  And exercise?  When I’ve been dizzy and near fainting just from existing?  Who ARE you kidding?!  I do my strength and flexibility exercises that I need to prevent more injuries and pain, and that’s all I can manage- no cardio, no way.

I could have dealt with one or two of these things without it making for a bad day, but in sum, they represent a really frustrating, worrying, irritating, and downright crappy day.

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Disability makes people uncomfortable

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

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

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

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

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

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

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

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

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

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

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Balancing Career and Disability (part 2 – accomodations)

Sorry it’s been so long between these Career and Disability posts. Live has been a bit out of control lately, and I’m afraid my blog has suffered a bit because of that.

So. I talked a bit about what a person has to do to balance career and disability in my first post, which you can find here.

One of the things I talked about in that post was accomodations. Since I know a lot of my readers aren’t disabled, or don’t have official accomodations, I thought I’d walk you through what the formal, legal accomodation process looks like. I’m saying ‘company’ here, but this process tends to hold true for companies and for schools, though schools are required to do a LOT more accomodating than companies are as a general rule. There are exceptions.* For the record, I’m dealing with what happens under the Americans with Disabilities Act in the United States. I’m nowhere near familiar enough with other accomodation systems to write about them, though I understand the kind of push-and-pull negotiations that I’m describing happen under them, too.

So let’s start with the basics. What’s an accomodation? An accomodation is a limitation on what you can be expected to do in either the work or school environment. It is a restructuring in some way that is supposed to make the place accessible to you in an equivalent way as it is for everyone else. Accomodations can be modifications to the structure, location, or the job itself.

As soon as you know you need an accomodation at your job – hopefully before you start work there, but ‘as soon as possible’ is important here – you go to your doctor and you get a set of restrictions written up. The restrictions say exactly what you can and can’t do – for example, for quite a while I had one that said I couldn’t lift more than 35 lbs overhead and more than 50 lbs overall, to protect my bad shoulder. I also had a restriction on how long I was to be placed in a kneeling or crouching position, to protect my knees – I think no more than 15 minutes without 5 minutes of being out of that position. In order to get an official accomodation, my experience is that these restrictions have to be very specific – it can’t just say ‘no heavy lifting’, it needs to say ‘no lifting over X weight’. They also need to say what the company needs to do to accomodate your need, for example ‘requires parking within 100 yards of her office, due to difficulty walking’. The more specific the note from the doctor is, the clearer a guideline it presents to the company you’re getting an accomodation from – an absolutely vital thing. If your note isn’t specific enough, you’ll find yourself bouncing back and forth between the company/school and your doctor. “does this cover it?” “No” “Dr, can you write a note that says X?”

Now, getting this note is not always a walk in the park. Some doctors don’t like writing for accomodations, for a variety of reasons including internalized ableism. I’ve had doctors who refuse to write notes for anything but other doctors and treatment, which made me want to pull my hair out! I’ve also had doctors who were great and worked with me and faxed several versions of the note to try to get specific enough to satisfy my employer (which was REALLY frustrating for both of us). Getting your doctor to understand why you need an accomodation can be frustrating. My current accomodations letter actually came from my neurologist, back when we thought I might have a neurological disorder in november or so of ’07 – which is to say, the doctor had no idea why I had the problems I had, nor did he have any way to verify that I needed the accomodations I outlined, but he was willing to work with me because he thought it was very important that I maintain as normal a life as possible, which meant staying in school. Fortunately, by then, I knew what accomodations letters should look like, so it only took 1 version to get what I needed carried out.

Anyhow, back to the process. So now you have your doctor’s note specifying what you’re not supposed to do.

You take it to the company. Now, the company does NOT have an absolute requirement to give all necessary accomodations. (on the other hand, a school recieving federal funds has a much stronger mandate to accomodate!) The company has to give necessary accomodations when the person can still perform the core duties of the job. Many a fight over accomodations revolve around what ‘core duties’ entail, and more than a few court cases have been fought over that very point. If a company wants to fight you on giving the accomodations, this is frequently one of the ways they will do it – by saying that if they give you the requested accomodation, you will not be fulfilling one of the necessary and important parts of the job.

In theory, the question of hiring and accomodating are different processes. Your need for accomodation is not supposed to be part of the hiring analysis; they are not supposed to consider whether they will need to bend their policies and practices to work with you. However, a great many companies use the principle I just talked about to un-hire people who their hiring process approved. I’ve come very close to having it happen to me. The company cannot revoke its job offer unless they come to the conclusion that you cannot fulfill one of the central requirements of the job, but as I already said, that’s quite a fuzzy area that is often a battleground.

The company may propose alternative accomodations that they believe will equally make the workplace accessible. Your guess is as good as mine as to whether these are actually going to be worthwhile propositions – I’ve heard it going both ways. Generally, these alternatives are a matter of monetary cost. Usually, they’re what in the law we call a ‘good faith’ effort – the company is well-intentioned and looking for ways to try to make things work well for both the company and the individual requesting an accomodation. Sometimes, though, they’re used as a way to make work impossible but try to shield the company from liability – “look, we accomodated zir**, but ze still was not able to perform the job adequately.”

So now, we’ve navigated getting the note, taking it to the company, and theoretically getting an accomodation.

Next there’s actually applying the accomodation, and this is another area where there are struggles. Your accomodation may say you have a flexible schedule, but your immediate supervisor may decide ze wants to see you 6 out of the 8 hours ze’s in the office, which really does a number on the flexibility of your schedule. Especially on something like that, if the accomodation is vague, you’re in for a fight to get it applied in the way you interpreted it. The more precise you can get the language of the accomodation (and for heaven’s sake, get it in writing!), the safer you are from this kind of problem, because then you can bring out your accomodation letter and show it to your boss. Mind you, this is definitely NOT always the case. I’ve worked places where accomodations were regarded as absolute, and if my boss asked me to do something contrary to my accomodation, all I had to say was, “I’m not allowed to lift that much” and I’d get moved to doing something else. Most people, once they have an accomodation letter, will not encounter their bosses trying to…whittle away at their accomodations. However, there are an unfortunate number of people who believe in the ableist notion that accomodations are favoritism, and thus you may get harassed by your boss or your coworkers over the very changes in your environment that make working possible for you. It’s not fair, but frankly the world is often not fair to those of us with disabilities.

The long and short of what I’m trying to say is that getting accomodations is often a big negotiated struggle. It’s not always that way; I know people who have informal, verbal agreements with their supervisors that have worked out well for them (this is particularly true for short-term things, like broken legs and shoulder surgery). But here’s the thing: if your company fails to live up to the agreed upon accomodations, an accomodation that was put together through the process I just described and documented will stand up in court, and be clear on what it means. Verbal agreements do not protect you as well, in part because there is no record of what happened, so whoever you talked to can forget or misremember what was said. As with many other things this law student has said, here again, I have to emphasize…GET IT IN WRITING!

It’s not fair that it’s such a big process to get an accomodation. We shouldn’t have to work so hard to get our employers to work with us, and some are a lot better than this. I’m trying to show what a normal, average process looks like, though, and in my experience, it looks like this.

Out of the whole thing, I find myself very grateful for the cooperative, helpful doctors I’ve had, who have been willing to write for accomodations that have let me work, stay in school, and generally live the life I want. Having your doctor on your side is one of the biggest helps you can have in this process – the other one is having a company that really wants you and is thus willing to work with what you need.

* Specifically, I know that med schools and law schools have successfully survived challenges to their scheduling and attendence policies (respectively). I am not certain why medical schools have survived the challenge, though I suspect that they were able to make the case that the kind of run-around that you go through as a med student is tradition because it’s necessary to prepare you for being a resident. I know the law schools’ attendence policies have survived because it is a requirement set up by the American Bar Association, and ABA accreditation is very important in the legal world.

** I try to use gender-neutral pronouns when I remember, because these kinds of matters affect people of all gender identifications.

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Life, plus one (service dog)

I realized the other day that while I’ve written a lot about Hudson being funny or difficult, I haven’t written a lot about…well, what everyday life with a service dog is like. Which feels kind of silly to me, since I write so much about what everyday life with a disability is like!

If any of you are coming new to my journal from this post, Hudson is my service dog, a 3 year old labradoodle who I have been with for almost a year. I actually break one of the rules our trainers set out for us – when Hudson and I are in the house, Hudson is almost never on a leash, because he’s so well behaved. With very rare exceptions (like really needing a drink or to go outside), Hudson never leaves the room I’m in, and never runs to anyone or anything, so I don’t worry about him not being leashed. Unlike most service dogs, Hudson has very little interest in the outside world, so he’s not about to run to the doorbell or run outside given the opportunity.

So here’s what a normal day looks like, living with Hudson.

I tend to kind of grumblingly wake up before I’m actually ready to get up because my bladder is demanding a trip to the bathroom. The doctors can’t decide whether it’s interstitial cystitis or functional bladder disorder, but I’ll tell you one thing for certain: it’s annoying! So I drag my grumpy butt out of bed. Hudson’s a bit of a lazy bum in the mornings too, so I have to call him several times and sometimes even poke him with my foot before he’ll hop up to accompany me to the bathroom. We drag over to the bathroom, and then drag back to the bedroom, and I go back to sleep for a while longer.

When it’s time for me to actually get up, usually Hudson’s already awake. As soon as it looks like I’m getting out of bed, he pops up excitedly and starts frisking around the narrow space between my side of the bed and my dresser. He comes up to me to get petted, but he’s too excited to stay, so he scampers back and forth, back and forth. Once in a while he gets TOO excited and whacks me with his open mouth, which ends this particular playtime.

When I get dressed, most of the time Hudson insists on smelling at least one article of my clothing. Otherwise, he mostly stays out of the way when I get dressed.

I live in a hundred plus year old house, so the halls and stairways are narrow, I send Hudson down the stairs in front of me, so we won’t foul each other up. This was something I had to learn – the stairs are theoretically just wide enough for the two of us, but he wants to go down the middle. He doesn’t want to be on the side towards the room because he’s afraid of heights, and he doesn’t like going down the wall side because he doesn’t like the feeling of being too close between me and a wall.

This summer, we put up a curtain hanging across the bottom of the stairway, to keep the livingroom air conditionering in the living room, and Hudson is still very uncertain about it. He walks veeeeerrrrrrrry slowly up to it, and waits for me to move it out of the way. The one in the kitchen doorway is, for whatever reason, less scary. That one, he just wants a big enough space open to squeeze through, and will walk right up to it before that space is opened.

Anyhow, so we get downstairs. I throw him out to do his business. Our backyard is concrete, so we have a little wood framed box of mulch for him to pee and poop on. We tried with dirt at first, but that got really icky, wheras this rubber mulch can be cleaned with a hose or by the rain, so it stays relatively clean. When he comes back in, I feed him and then get my own cereal out, then pack my lunch.

Right. So I’m dressed, we’re fed, what next? Let’s assume this is a work day.

I walk over to our front door. His gear is right next to it. No matter what kind of treats I offer him, Hudson doesn’t want to come over, because he knows that he’s going to get dressed and start ‘work’. I eventually coax him over, and once he’s there he’s pretty cooperative in getting dressed. He’ll duck when I try to put his harness over his head, but that’s the only attempt to make it more difficult for me.

Now that we’re all ready, we either get in the car (if my boyfriend is available) or go catch the trolley. Hudson likes the car, so those days are a lot less eventful. If we have to take the trolley, we walk about three times as far, which tires me out a bit. We get on the trolley and they let me pay the disabled rate, something they never allowed when I was disabled and walking with crutches. I have to ask the person in the front-left seat to move because that’s the only spot with enough room for the dog because the seats don’t have space under them for him to duck into. We ride the trolley for I guess 8 or 10 blocks, and then we get off to catch the subway.

I’ll note, at this point, that it’s inevitable that someone will comment on my dog – usually at least one person per vehicle. More often than not, they ask what he does for me, which is rather rude as effectively it asks, “Hey disabled person, what can’t you do for yourself?” There is almost always a comment on how handsome a beast my boy is, and queries about what his breed is are not uncommon. I try to be nice and friendly when responding to all these questions, because a service dog user is, in the eyes of the world, kind of an ambassador for service dog users. I’ll admit most of the time I wish they’d leave me alone just like they would do anyone else on the trolley or subway, because travelling is uncomfortable to me, and the dog is usually scared so requires a lot of my attention. They believe they have a right to my attention, and if it were only for my own sake, I’d be more willing to make it clear to them that they do not, but I represent service dog users so I have to be nice.

This branch of the subway is actually elevated on our end, so we take the elevator up, pay at the window and then walk back to the accessible gate (because harnesses are not compatible with turnstiles). I have to ask someone to open the gate for me, because it’s beastly heavy. Hudson is nervous to be up on the platform, from which you can easily see through the tracks or through the fences to the ground. He spends most of our time up here shaking, while I pet and verbally reassure and feed him treats.

Then the subway comes, and he’s scared so everything he’s doing is very abrupt and jerky (OW!). We get on, and more often than not I have to ask someone in the handicapped reserved seating to move – they almost never give up their seats without me asking, and sometimes they’re very rude about it. I get sat down, and get Hudson down as much out of the aisle as possible. He does his best to stay in the aisle as much as he can, which is of course hazardous to both him and other passengers. We continue on a bit of a tug-of-war the whole way to work, which is hard on my body and frustrating.

When I get up, he wants to bolt off the train, so he does his best to drag me along and I use his pinch collar to remind him that he’s not supposed to do that. Once again, we have to use the handicapped gate to get out, but this station isn’t accessible so I have to trudge my way up the steps to get to the surface. Ugh, I hate steps. Especially when Hudson’s wound up so he’s less help.

Hudson’s still darting and pulling, because he hasn’t calmed down yet. Because my background check hasn’t come through yet, I still have to go through the visitor’s entrance at the courthouse. The security people keep making me take an elevator all by myself, nevermind that the worst Hudson might do to anyone is sniff them. Up the elevator to my floor. The way the building is designed, I have to walk around 3 1/2 sides of it to get to my office, because the 4th side doesn’t have a through passage. Oh I hate this walk. The building is a block to each side, so it’s a long haul for me. And it’s not an accessible building – there are stairs, a few up, a few down. By the time I get to my building, I’m feeling woozy from the heat and sore as all hell from the trip in.

I put out Hudson’s rug and get us both some water, then we settle down to work, him to doze on his rug, me to read motions and petitions and research them. He pops up when I get up to move around the office for things. I eat my lunch in the office.

Around 2, we head outside for his bathroom break. My office has been very nice about it, and the security guard in the corner nearest my office will let me back in so I don’t have to do the big treck around the whole building to get back. It rains here often, and so sometimes his bathroom break gets postponed while I wait for it to stop. We walk across the street, and then across again, so we’re catty-corner from where we started, at the small park. I have him do his business in a planter so that no one is going to end up stepping in or sitting in or so on his pee or any of his poop that I can’t clean up. He usually poops at this time of day, so I take one of my bags out of his harness packs, grumble to myself as I climb into the planter, and clean up after him.

We go back to work for another three hours, and then we get to travel home.

Because we’re travelling home at 5:00 every evening, the subway is PACKED, and the crowd presses in around Hudson, which he finds uncomfortable (and I can’t blame him). It’s harder to get people to give up their seats this time of day, and I often have to point at the sign that indicates these are reserved seats to make them move. The struggle to keep Hudson out of the aisle is harder now, because the crowd puts him a little more on edge, and more important, because the aisles are so crowded with people standing.

We finally get to my station, and I breathe a sigh of relief as we get off the blasted subway. Hudson is jerking and pulling like a fiend. We get on the elevator up to the crossing to the other side, where there is an elevator to the ground. Walking across that pedestrian overpass scares the hell out of Hudson – too much ‘down’, too easy to see through the chainlink fences, on both sides, so that even if we walk down the middle he can see down.

Elevator down, finally, and then we cross the street to the trolley platform. It’s just a little island in the middle of the road with a railing on one side – no seats, no shelter. On hot days, if our timing is bad, I’ve come very close to fainting here. I lean against the railing and wait. Hudson is still anxious, and having cars and trucks and motorcycles going by on both sides of us doesn’t help matters any. I’d really like to just zone out and wait for the trolley, because I’m feeling lousy by now, but I have to stay paying attention to him and soothing him. And of course, because we’re standing there, people often want to comment on how cute my dog is and ask what he does for me, yet again.

Finally the trolley is here. This stop gets a lot of people boarding ’cause it’s the intersection between the trolley and the subway. They rush on, but they tend to be polite about giving Hudson and I enough space to board. I try to get on early so the person I depose from the front-left seat will still be able to get another seat, and no one has ever given me the slightest bit of a hard time. People who I chit-chat with on the platform occasionally stand near me to help shelter Hudson, who inevitably has part of his body out in the aisle. I do appreciate that quite a bit – he’s been kicked twice on the trolley, and I worry that he’s going to start associating the trolley with being walked into. I have to keep watch for people exiting and entering, to make sure they don’t step on him, and try to stop them with voice and outstretched hand when it looks like they will. You’d probably be surprised by how often people don’t even register the voice and hand unless I push back pretty hard, which tends to hurt me.

We finally get to our stop. Hudson’s worked up, I’m worn out and ready to collapse, but there’s still 3 2/3 blocks to walk home. I swear, it feels like these are the longest blocks in existence, as the dog jerks and pulls and I’m tired and god it’s hot…

We get home. I want to collapse, but I take off Hudson’s gear and get him a drink and let him out to pee first. Sometimes I even remember to get a drink into myself. Then I stumble up the stairs to go lay down in the bedroom, because it has the best ratio of air conditioning power to space. I usually manage to get out of my work clothes before I collapse. I stay down until my boyfriend makes dinner, usually.

The rest of the day is pretty uneventful. Sometimes we watch a movie and I spin yarn, my newest and favorite passtime. Sometimes I feel too flattened for that, or it’s too hot and our underpowered airconditioner in the living room won’t cut it, so I stay curled up in bed and read. Usually, the boyfriend either goes on his computer or plays video games then, because I’m feeling crappy enough that I need to tune out the world and fall into a book.

On work days, I usually don’t recover enough for a rousing game of chase-the-dog-around-the-livingroom, which is the only athletic play I’ve managed to get Hudson interested in at home. Work days are, for me, travel – work – travel – rest – eat – watch tv or read – sleep. It seems positively dull spelled out like that, but, well, I suppose work days are a bit dull because I don’t have the energy for them to be anything but. Work takes everything I’ve got, and at my current job, I don’t have the set-up that would enable me to work 2 days in a row.

That is, I suppose, part of the story of life with my disability more than it is life with my service dog. You have to pick and choose what you’re able to do and in what order and how. Having my service dog makes my disability matter less in some ways, but the disability will never go away and no adaptive aid or assistant is going to change that.

So there you go. An average (work) day in the life of a woman with a disability and a service dog.

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