Moving along…

I saw my rheumatologist last week. I still don’t have an official diagnosis, but thankfully I DO have medication. I mentioned before that I’ve been on prednisone for a while now. Prednisone, while it treats inflammation, does not do anything to deal with the immune system malfunction that is CAUSING the inflammation. It also has a host of really lousy side effects – the hot flashes, emotional instability (including great anger – I think we’ve all heard of “‘roid rage”, and prednisone can definitely cause it!), weight gain, fat deposits that alter the shape of the body (usually rounding the abdomen greatly and adding a ‘hump’ of fat on the upper back), ‘moon face’ (the face getting all puffy and round), bone degradation, and all sorts of other fun things. The longer you’re on it, and the more you take, the greater your side effects. The original dose I was on did not seem to help, so my rheumatologist had approved doubling it. The week before I saw my rheumatologist, things were getting worse and worse. The on-call doctors at his practice increased my prednisone twice in response to my phone calls, which meant I was taking three times what he had prescribed when he started me on it. Lucky me, that was enough to trigger the ‘moon face’ effect. If you saw only my face, you would think I had doubled my weight – I have an enormous double-chin, and my face just LOOKS fat. I don’t think I’m a vain woman, but it was quite upsetting to see all the same.

My rheumatologist said that the latest two increases meant I was taking far too much, and lowered me down to twice my original dose.

He also started me on Plaquenil. It’s one of the first-line medications for rheumatoid arthritis, though it’s used in other rheumatological disorders. I suspect that at this point, the working theory is that I have seronegative rheumatoid arthritis. It’s a good match for my symptoms – I’m affected most in the small joints of the hands and feet, and in my spine, and that combination is not uncommon in RA. All of my blood tests other than indicators of inflammation and a very generalized indicator of autoimmune activity have come back normal, so whatever I have, I have the seronegative version of. At that point, it’s a clinical diagnosis, purely based on what the doctor sees in terms of my symptoms and how he thinks it fits together. It is entirely possible that at some point in the future, something will change and the blood tests will show precisely what’s going on. That happens for some people; for others, the blood tests are never conclusive.

So I’ve been on the new medication for just over a week. While apparently it has nasty gastrointestinal symptoms for some people, I have so far been spared that, despite my usual sensitivity to such things. I don’t wish to jinx anything, but the swelling in my fingers is already down slightly. I’m now back to normal, but I’m definitely slimmer. And the moon face effect seems to already be coming back down slightly.

Unfortunately, the muscular problems in my back are not succumbing to my efforts to help them. I did figure out that I seem to be exacerbating my troubles by using my iPad when I’m laying down. The worst of my muscular problems are between my shoulderblades at this point, and those muscles are working when I hold my hand up to type or navigate on the tablet. My physical therapist had some ideas about better positions to set myself up in, but then the tablet is far enough away that I can’t see what I’m doing! I think I may just have to accept that I can’t spend much time online until my back is doing better.

That’s really all that’s going on around here. I have projects that are just waiting for me to have my hands and back behaving at the same time – a hair clip I am repairing the finish on, a sweater that needs to be sewn together, and I’ve joined in a hair craft exchange for the holidays. So far, the only thing I’ve been able to do is knit, because neither my hands nor my back needs to be at its best for that – it doesn’t put as much pressure on my thumbs as sewing, and it doesn’t require sitting somewhere other than my couch the way other things I’d like to work on do.

I’m enjoying one of my classes, and the other two I’m just trying to keep my head above water. I’ve missed SO much class, the professors in those two classes would be well within their rights to refuse to let me take the exam, but it seems like both of them are willing to let me slide. Thank heavens. I don’t find the classes particularly useful for one of them – the cases are pretty self-explanatory – and while I do like the other class just fine, I think I just don’t get as much out of class as most people do anymore. I’ve been at this so long that I’ve gotten pretty decent at teasing out what’s important in decisions, I think. It’s funny, it’s much harder (to me, at least) to tease out what’s important given a set of facts than it is to tease out what’s important from a case. A case is all about principles, where a fact pattern is more like…matching recognition. You have to be able to pick out which pieces are like cases, and then apply the principles from the right cases. I hope that makes sense, I’m not certain I’m explaining in a way that makes sense to someone who doesn’t work in this field. It’s one of the reasons that there is talk about how useful law school really is. That, and unless you do a clinical of some kind, you learn very little about what the process actually looks like. Okay, someone comes into their office and gives you a bunch of facts…so what do you do then? What should this form or this request to the court or this motion or this filing look like? What order do you do things in? Who do you need to send things to, and how? And people are taught perilously little about how to bargain, which is often at the heart of legal work. Very few cases of any kind actually go to trial; most settle. And if you don’t know the very basics of how to bargain, how on earth are you going to get your client what they should get? I see this in exercises, where instead of giving an opening offer, someone will give a range of what they might accept. No, no, no, you start at the best end of your range and know in your head that you’re willing to accept less, and then see what their opening number is, and then both sides work towards a compromise, if possible. If you give them a range straight off, they’re going to START at your low end of acceptable and try to work you down from there. I never realized how much shopping at places where one haggles could be helpful professionally until I saw how very badly some people do at this sort of thing.

Anyhow, enough about school.

The fiance and I need to do something to insulate this place – the heat keeps cycling on, and admittedly it’s quite cold out tonight, but this is expensive. Unfortunately, we have electric forced air heat, which is terribly pricey. I don’t even want to think about what our heating costs are going to look like this winter. At least with my horrid prednisone hot flashes, we’re keeping the apartment relatively cool (64 degrees, where I normally am uncomfortable under 68 or 70), which I suppose is probably helping matters. I am realizing that the big bay window that I love in our living room is going to be a horrible heatsink all winter, because we can’t really put window film up to help keep it warmer. I guess we’ll just have to do all the other windows in the apartment, and get draft-blockers for the doors we rarely use (we have 3 outside doors – one to the ramp, one out of our kitchen, and one into the building), and just hope that helps keep us warmer in here. I definitely expected a place that was extensively rehabbed less than a decade ago to be better insulated! The worst part is that the room I need to be the coolest is the room that is consistently the warmest. I have the worst time with the heat flashes at night, so I like the bedroom cooler, but the heating system does not agree with me. So it’s sweaters and blankets in the living room for us. Ah well, at least we aren’t worrying about keeping guests comfortable, just us and the pooches.

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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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An intervention goes right!

I mentioned a while ago that I tried to talk to my boss about her use of the word ‘crazy’.

Well, Wednesday I had a chance to talk to another intern who had been using the word ‘lame’ when she got upset.  I very much like this other intern, so I was afraid of having this talk.  It’s harder for me to approach people who I like about problematic language.  Especially since the conversation with my boss…didn’t go off as planned.

It couldn’t’ve gone better.  I phrased it simply.  “Lame refers to having an ‘abnormal’ gait.  Like me.”

She was shocked to realize how hurtful her language was, and promised in the future to try to remove it from her language.

I thanked her.  Because that response?  That’s the response of a true ally.  I don’t expect people to get it right every time, to get it right from the start.  But when a person is presented with a choice of respecting or ignoring the word of a person from the minority group, I think that’s when you find out who your real allies are.

Fellow intern, you can count yourself as my ally.  I sure do.

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Service Dog (Day 7)

Friday, June 26: Day 7

He was so excited to see me today! He ran to the end of his leash and half jumped up, then spent a while snuffling at my hands and my legs, shoving his face against me and panting happily. While dogs pant when they are stressed, that doesn’t seem to be a habit of Hudson’s – he yawns, but when he’s panting, he seems to be happy.

We talked about yesterday, and I just about cried when I told them how different the public responded to me. I know that for people whose disabilities are invisible (like our two with seizures), it can be uncomfortable to have your disability become visibly manifested in having a service dog, but for me, it was so liberating to not have my disability be the focus of the majority of my interactions with strangers.

We did more obedience work today – heeling correctly, down-stays (where you have your dog lay down and stay there, even if you walk away), food refusal, so on. Then we talked about how dogs play together, and the best way to introduce strange dogs and figure out if it’s safe to have them play together. I thought to myself well, Hudson hasn’t had the chance to really play, so after class I’ll see if I can get someone else to stay and let our two dogs play!

We got all kinds of instructions on what to do this evening, when we go home. I felt bad for the poor dogs – they haven’t eaten for 24 hours, so that they can be switched over to their new foods if their new person is feeding something different (I’m not) and so that they’ll still eat their dinner even if they’re being fed the same thing.

Then there was a talk about the daily ‘well dog’ check we should be giving. Phew, I swear we check every part of the dog, nose to butt! Hudson was NOT keen on this.

Finally, we were done for the day. Ye gods these days are long. N and Claire stayed to play with Hudson and I. The two dogs know each other well, and as soon as we had them out of harness and off leash, the two took off running for all their doggy worth around the play yard! I think we were there for 20 minutes before we called it quits, and from all appearances they had a good time.

It was a little hard to convince Hudson to step on his bed – I had to lure him with a toy – but once he was on it, he didn’t want to get off! After a year of living in a kennel, it must have felt like a great luxury to him, and he heaved a huge sigh before he started nuzzling into it. He spent most of the rest of the evening curled up on it, and wasn’t much interested in the toys I’d brought for him. Oh well. I tried! His trainer says he likes these ones, so maybe he was just too nervous.

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Disability affects faith

I’ve been stewing and thinking about this piece for quite some time. It’s a complicated and very personal issue, so obviously, I do not speak for all PWDs. I am trying to give you an idea of how disability affects faith, because it most emphatically does! It affects not only your own faith, but the faith of people around you.

As an aside, I do not think I will mention what my own faith is, because it’s relatively unimportant in this discussion. If you’re really curious about it, please go ahead and ask. I use ‘higher power’ in this discussion to mean any higher power – god(s), god, goddess(es), spirits, angels, saints, some amorphous higher power, etc. It’s a shorthand, and used because I do not wish to prejudice this discussion in favor of one faith or another. For what it’s worth, I think all of these reactions are completely valid, and do not think one is ‘better’ than the others.

I’ve noticed that it seems like a higher proportion of PWDs are Buddhist than the general populace. I suspect this comes from the emphasis on inner life. Buddhism also teaches that life is suffering, which can be reduced by having this very rich inner life of contemplation and less focus on the world and all its trappings. It stands to reason to me – if you can release some of the desires to do activities or obtain things that you no longer can because of your disability, you will likely have greater peace and happiness!

Now, when we become disabled, there is a huge array of ways we deal with it regarding our faith.

Some of us leave, and never return, because our faith is shattered by this bad thing happening to us when we believe we are good people. In this group, there is often a sense of ‘why me?’ Some leave because a higher power that would do that is no higher power they wish to worship; some because they do not believe that this would have happened to them if a higher power existed. I see this one across every religion. Disability can have very ill affects on any relationship, and when your relationship with a higher power is one of trusting that higher power to keep you sheltered because of your faith in them, it can feel like a betrayal when that higher power does not appear to affect you. I feel like most people in this group, who walk away from their faith, do so because of anger or grief.

A variant on this theme is someone who leaves their faith for another. In light of a disability or other difficulty in life, people sometimes come to the conclusion that their prior beliefs cannot be right because the change in their life does not seem to fit within that belief system. I would not say that this is losing or abandoning faith, but merely changing perspective. Sometimes, people go through many faiths before settling on a new one. Some people spend a while not holding to any faith and then go to a new faith instead of their old one.

Some of us, myself included, don’t actually walk away from the faith per se…but are so emotionally affected by our disability that we have to take a break. In general, this is an approach that regards a disability as something that happened for no particular reason. For myself, the emotion that made me stop practicing was anger – I was too angry with everyone and everything to feel comfortable making any kind of contact with my higher power. I did not want to reach out to my higher power with a fist I could not unclench. After nearly two years of being disabled, I am finally approaching a point where I think I might be able to return to my former levels of practicing my faith. I have lived by its tenents this entire time, to be certain, but I have not been a person who practices.

Some of us find meaning in our disability. They see it as something that has happened for a reason – a lesson to themselves or others, a rebuke, a challenge to make them grow. I cannot recall seeing this attitude towards disability from anyone but Christians, though I have seen it in many different denominations of Christians. This type of view tends to make a person practice more frequently and more fervantly than they did before, and often leads to the person talking about this approach a great deal. I cannot tell you how many conversations with people who view their disability this way have included a reference to their disability being for a reason. As I am religiously a pretty private person, this tends to make me a little uncomfortable – this ‘witnessing’ all the time. I think sometimes that people are pushed to react this way, and I wonder sometimes how many of the people I hear fervantly proclaiming that it happened for a reason are really asking ‘why me?’ but cannot say it because they have recieved poor reactions from others when they speak that way. People who speak to a PWD and assure them that things happen for a reason can silence any kind of questioning, because if things happen for a (good) reason, then asking ‘why me?’ is questioning a judgement of the higher power and thus not to be done. Please, please consider this when speaking to someone with a disability. The pat reassurance that all things happen for a reason may comfort some, but for others it shuts down their own attempts to make sense of what has happened to them and silence the person who is actually experiencing the change in their life.

There are people who find that their view and approach to religion does not change. These tend to be people who have a great deal of acceptance towards their disability. There is less ‘why me’ and more ‘things happen’. I do not mean to imply that this is any better an approach than any other! They are simply different. Their outlook on the relationship between higher power and world has not changed significantly. It sometimes seems to me that this may be the path of least internal turmoil towards the higher power.

Relationships change for people when they become disabled. Some change smoothly and effortlessly – my relationship with my boyfriend has made this transition to where he must assist me more without any friction. Some become terrible anger and pain, to the point where they are abandoned, temporarily or permanently. Some suffer fits and starts – my relationship with my mother has been like this, where she accepts the physical side of my disability gracefully but has trouble with the change of perspective that comes with it.

I think that the relationship with a higher power is different only in that the other entity in that relationship doesn’t speak to us as clearly as a person can. It is only how we relate to the higher power that changes, not how it relates to us. In that way, it is both easier and more difficult to navigate. Easier because there are no hurtful comments, resentments, or slights on the part of the higher power; harder because we cannot just sit down with the higher power and hash everything out with the clarity one can with another person.

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Changing life

In a way, becoming disabled is like being a plant that has been viciously pruned back.  Because of how much is changed, you have to grow in new directions.  Well, that or you sit mulling over everything you’ve lost all day long, but that scenario doesn’t really get you anywhere.

In the past year and a half of being disabled, I’ve tried to find some new equalibrium.  I’ve found that just as hard as it sounds.  There have been big physical changes – crutches, bracing many of my joints, new medications.  There have also been lifestyle changes.  I don’t even try to do things in the morning anymore if I can help it – I know precisely how (un)successful that is.  I wake up at 10:00, but I often don’t get out of bed until 10:30 or 11:00, because I hurt too much until the morning medications kick in.  I’ve learned that I can’t do the same thing for hours at a time, but must break my life into blocks and take breaks to stretch, walk around, get more water, so on.  I take far fewer classes.  I have trimmed down my commitments.

In the end, that leaves a very different world.  I do more crafting than I used to, because I can do that even when my mind is too muddied to think.  Oh yes, the costs of this disability are more than the physical ones. 

Somewhere between the disability and the medications, I’ve lost a great deal of my ability to be mentally sharp.  I have to be ‘on’ for my classes, as I am a law student and law classes are rather infamously taught using the Socratic method (which can be humiliating when you aren’t at your best).  On bad days, just getting to class is a struggle.  Fortunately, I have had sympathetic professors; because I choose to participate more than anyone else in the class (by a longshot) when I am mentally on top of things, they leave me alone when I’m not.  I just have to remember to keep my mouth shut, which I am not very good at.

In the end, learning to live with a disability is learning how your body is willing to let you live life.  For me, it has meant slowing down drastically.  The wild bouncing-off-walls, always doing something Brilly that existed before…can’t anymore.  Everything has to be planned, oftentimes down to stupifying levels of detail.  I have had to let go of control of a great many things in my life.  Ask for and accept help when I would not have before.

It also means a lot more time by myself.  I was quite the social butterfly before I became disabled; I’ve become rather stuck in my house now.  In part because of this, I now have a great many plants.  If I’m going to be stuck inside, at least it can be pretty.

A piece of good news: I’ve been paired with a service dog.  This summer, Hudson will be joining me.  My boyfriend and I are also trying to figure out the logistics of attempting to move in together, while he finishes his PhD and teaches at a college almost 100 miles away.  I can’t be moved away from school, or I will miss a great many more classes than I already do, so he will have to slog all the way out there.  Thankfully, he is willing to do that; I’m not sure what we would do, otherwise.

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Changing Expectations

Perhaps the most difficult part of becoming disabled is the way it changes what you are capable of.

Before I became disabled, I was capable of a lot of things.  I was a camp counselor.  I backpacked around Europe.  I participated in a small local literacy drive.  I was a dancer.  I bartended.  I worked trade-shows, spending all day on my feet.  I made costumes, sometimes hand-sewn.  I was a swordfighter, and a fencer.  I can hardly begin to list all of the commitments I made.

Now…I am involved in one club, instead of the three or four I used to.  I have trouble even making it to just 2 courses, when I used to take 4-6 each semester.  Dinner often happens only because I have someone who comes in and helps me every evening.  I cannot wash the dishes, chop vegetables, vacuum, scrub anything, and the list goes on and on.  To be perfectly honest, on the worst days, I cannot so much as make it to the bathroom unassisted.

The change is…hard.  My body does not work correctly, and that is a hard thing to be confronted with at 25.  We expect that eventually, some day in the far distant future we’ll get old and arthritic, but we really expect our bodies to be basically functional until then.  We do not expect to be looking at purchasing a wheelchair at 25, particularly in lieu of some type of violent trauma like a car accident.

If you had asked me in the summer of 2007 what I was going to do when I got done with school, I would have told you that I was going to be a district attorney.  I wanted to work violent crimes.  I wanted to lock up people who hurt others, get them off the streets, make the world a safer place.

Instead, now I am faced with the fact that I will probably never be able to work a traditional job.  Certainly not in my chosen field – attorneys typically work 50+ hours per week.  Not happening here, where I have trouble making it to 4 1/2 hours of class (after I manage my doctors’ and physical therapists’ and occupational therapists’ appointments).

So then what do we do?  I know several other young, intelligent women who are severely disabled.  We are all, at this point, trying to figure out the answer: what are we going to do, now that we’re grown up and it didn’t go the way we thought?

We don’t want Social Security Disability.  We may find ourselves in a position of needing it, but I can’t begin to express how deeply we do not want it.  However, we often find ourselves with few options.  If you cannot guarantee that you will be well enough to make even a part-time job consistantly, no one wants to hire you.  The fact that you do great work when you are there is overshadowed by how often you can’t be there.  Tele-commuting doesn’t work if part of why you can’t be consistant will for example put you in bed – which my disability certainly will some days.

For me, the distant, faint hope is teaching at a college level.  I would love to be a law professor; I would be happy as a history or pre-law professor, I think.  Of course, given my health it would probably be as an adjunct professor, teaching one or two classes at most.

It is an enormous, and painful adjustment to make – from ‘I want to do something that I think is vitally important to society, which I think I would be very good at’ to ‘With my health being what it is, what can I do?’

When children are asked what they want to be when they grow up, no one says ‘I want to be disabled on Social Security!’

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How I became disabled

It occurs to me that in my first post, I made it sound as if my disability has been some kind of steady process.  This is, for better or for worse, not the case.

What was probably the first relatively major manifestation of my collagen problems showed up when I was 12.  I started tearing the fascia in the soles of my feet.  They called the condition plantar fasciitis because of the inflammation that resulted, but my tearing was exceptionally bad.  I’ve never heard of anyone with a case as bad as mine.  Fascia is the connective tissue that surrounds muscles, bones, and organs.  In the case of the plantar fascia, the part I was damaging, it is actually what supports the arch of your foot.

At any rate, I slowly did quite a bit of damage to joints in my teens and early twenties.  Through frequent sessions of physical therapy, I was able to enjoy some recovery from them – not the total recovery a normal person expects, but certainly regaining the use of my previously injured joints.  I was probably in low amounts of pain constantly; I learned to ignore my body pretty completely by the time I was 20 and had to re-learn to listen to it when I took a yoga class in college.  The yoga class without a doubt prevented a surgery on my shoulder (which would have likely had a poor outcome).  It also kept my joints in general relatively stable for a year, for which I am deeply grateful.

At any rate, things continued in much the same vein – injury, slow and incomplete recovery, continued low-grade nagging from previously injured joints – until August 2007.

I had been accepted into a law school across the country from where I grew up.  I had wanted to go far; I figured, this was the last time in my life when I was certain that all I had to worry about was me – no kids, no boyfriend/husband, no pets, not much furniture (all of which was left with my parents).

Three days before I left, I woke up stiff and sore in my hands and feet.  This scared me; it was not the first time this had happened.  The previous time had been after a severe viral infection – the doctors thought that my immune system had gone into overdrive and started attacking my joints, worst in the hands, but present in many of my joints.

The next day, all of me was sore.

The day after that, I went from sore to truely in pain.

Ever since that day, I have been in constant, unceasing, unremitting pain.  We have tried an enormous arsenal of medications, which at best make the pain bearable.  I have not had a day where I felt no pain since then.  A good day is when the pain is just background noise, present but possible to ignore.  A bad day, well, I don’t make it out of bed except to eat and use the bathroom, and I do my best to sleep as much as possible, because at least if I am asleep, I am not actively hurting.

We don’t really know what happened that August.  I have my suspicions – I believe I developed fibromyalgia.  Fibromyalgia is also known as ‘central sensitization’, which I believe to be a more accurate term.  In recent years, they have discovered that people who experience fibromyalgia actually have some slight differences in their brains, and in their nervous systems.  Fibromyalgia often happens after an illness or an injury – a result of too much pain that sets off the nervous system so badly that the nervous system begins recognizing other sensations as pain.  For me, vibrations are particularly painful.  It has also made me light and sound sensitive – flashing or intense lights will give me a headache, as will sounds above a certain volume or at certain pitches.

At any rate, the whatever-it-was in August 2007 is what actually made me become disabled.  It has continued to worsen, though we do not know why.  I have slowly lost my ability to keep up with ‘normal’ life.

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