Heavy sedation feels like whoa

So, I had a procedure today to determine what’s going on with my GI.  The news is good; with some minor adjustments in diet and the addition of a medication that binds liquid, it should be totally managable.  I’ve been on that medication before with no side effects, so this is about 99% positive.  (The only real downside is that I’m going to have to pay a lot more attention to the way my GI reacts to things, and may have to be more careful about substances like caffeine)

But to get to the good news, I had to make it through the procedure.  They gave me a combination of an opiate (to minimize ‘discomfort’ and sedate somewhat) and versed (to borrow my doctor’s words, “to make you forget”).  I remember things clearly up until the second dose of versed…and then I woke up in the recovery area.  I’ve heard of people having all kinds of bad experiences on versed, but this is the second time I was dosed with it, and all things being equal, it wasn’t all that nasty for me.  (Though I did have a reaction to something the first time that had me throwing up for a couple of days, I think that may have been my oh-so-delicate system’s response to the physical stuff they were doing, not the drug.)  I apparently take rather a lot to be knocked out – two to four times the standard initial dose.

There was some minor stress and confusion today.  I didn’t think about the fact that I was going to be knocked out and someone else was needed to mind poor Hudson.  The fiance had headed out for a walk and I couldn’t get him on his cellphone.  For a while it looked like one of the nurses was going to hang on to Hudson in the room with me, which would have worked out okay.  I was really impressed that no one seemed upset or annoyed or difficult about Hudson, even though I’d managed to make quite an unexpected imposition.  Granted, this hospital has always been totally awesome about the service dog.*  Their only concern was making sure that everything was handled in a way that kept the pooch comfortable, and the nurses were willing to totally go out of their way to take care of us – they were great when I explained minimizing interaction with him for the benefit of our partnership, which I’ve found a lot of dog-friendly places have issue with, but not here.  In the end, though, my doctor was running so late that the particular nurse who had volunteered to hang on to Hudson was going to be off shift.  They discovered that my fiance was in the waiting room, though, so he was able to take Hudson. 

Poor fiance was worried that it might be like that instance last summer when the ER barred Hudson, but it was really just a case of trying to keep the stress on the dog the lowest.  At least if he was with the fiance, he was being left with someone familiar to him, and his second favorite person in the world.  Apparently Hudson periodically whined while I was away – poor pooch.  That seems to be his typical response, though.  He doesn’t like being away from me.  I think sometimes he worries about what might happen while he’s not there to watch over me.  The fiance occasionally petted him when he whined, and apparently Hudson took that as a sign that they were going to me, because he stood up looking at the door he’d gone through when the fiance took him back to the waiting room.

Anyhow, so everything went well.  We grabbed an early dinner and had a brief stop in a store I enjoy to get a treat for later.  We got home and…well, they warn you that you aren’t to drive or make major life or business decisions, and I can quite tell why.  I’ve felt kind of…floaty…ever since, and I think I got dosed with the medications about 5 1/2 hours ago.  My head is fuzzy, and it takes longer for things to make sense than usual.  And oh, the bed felt so good to lie down in.  I spent a few hours curled up in bed reading mostly because bed felt so GOOD.  Just comforting and the right temperature and soft and…nice.  (I’m spoiled and have very nice sheets and a thick memory foam topper, oh yes I do.  I love them very, very, very much.)

I’m definitely not entirely back to myself.  I’m…here, but I’m drugged.  Not in an entirely unpleasant way, but everything feels just a little bit surreal.

…I probably should have put off writing the IT guy about my request for a listserv for a project until tomorrow, but at least I had the fiance read it first.  Oh well.  Worst he can say is no, I guess, and then a friend of mine has said he’ll find someone to host it if the school won’t.

*Almost all of my doctors are at this hospital, and the worst thing anyone has ever said about him is either that he startled them or that he’s in the way and needs to move to a different spot in the room.  They are always friendly and positive about his presence, and never once has anyone suggested that I shouldn’t have him with me.  Today was no exception – everyone loved him and wanted to help and even listened when I explained the ‘can not pet or interact’ rules, much as they wanted to love on him.  The way the hospital staff have responded to Hudson is part of why I ❤ that hospital and have everything there, even though it’s halfway across town.  I go where I am welcomed, you know?  It also helps that they consistently treat me as a person, not just a medical question or a disability.  The way this hospital acts?  This is real access, this is real accomodation.  This is me being a person with dignity and rights and intelligence and value and individuality in their eyes.

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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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Disability services – hit or miss

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

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

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

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

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

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

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

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

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

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

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Sorry I’m so inconvenient

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

Like in one of my classes.

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

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

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

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

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

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

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

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

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

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

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Emergency fail

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Travel fail

I had a distinctly unpleasant experience today: I was discriminated against.

When you have a disability, you get used to a lot of the same kinds of discrimination: counters set too high, steps to get in that you can’t get over if you’re wheeled, restaurant owners telling you that you can’t bring your (dog, scooter, sometimes even wheelchair) in. It gets old fast, but you get used to it because it happens all the time.

It’s shocking, on the other hand, when you get it somewhere you don’t expect it. Somewhere it hasn’t happened to you before.

Yesterday, a taxi I called refused to transport Hudson and I.

I called the dispatch to get my cab and told them that I had a scooter that would break down and fit in the trunk. I didn’t mention the service dog because I’m under no obligation to do so.

The cab arrived 5 minutes late and knocked on the door of the house across the street, but I was watching for a cab to arrive so I saw him. I drove the scooter out, and I had Hudson with me.

The driver said, “You didn’t mention the dog when you called dispatch. You have to mention the dog.” I told him that I didn’t have to, because legally they had to transport service dogs. He repeated himself. Then he said he wasn’t the cab who was sent for me; they would be along in a few minutes. He got into his cab and drove off.

I’m sure all of you out there in cyberland have seen through what he said. Of course he was the cab sent for me! I live on a little tiny residential street. Cabs are rare here, and I end up calling them more often than anyone else on the street, because I have the most need of outside transportation.

Well, I wasn’t thinking at my best. It was first thing in a hectic morning for me, because my alarm hadn’t woken me and I’d overslept a whole hour and thus had barely gotten out the door at a near-acceptable time. So I waited almost 10 minutes, and then called the cab company to ask where my cab was.

They told me he was already there. So I told them about the driver who refused my service dog and drove off without me. They sounded pretty appalled and sent out a 2nd cab. That cabbie was at least nice and helpful.

I’m still shocked by the blatent discrimination. I’m waiting on a call back from the cab company’s manager to find out what they’re doing about the cabbie and decide whether I’m going to file a complaint only against the cabbie or if I’m going to file against the cabbie and the company. It mostly depends on how they respond to his wrong.

Fortunately, in the US, I have the Americans with Disabilities Act to make actions like that illegal and provide for legal recourse when they do happen. I can only imagine what it would be like in a country that didn’t have such laws in place.

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Disability Blog Carnival!

Welcome to the August edition of the Disability Blog Carnival! I’m very happy to be your host.

When I asked for submissions, I decided to make the theme ‘distance’. I think distance is an interesting concept because we use the same word to mean so many different things – the space between ideas, the space between here and there, the space between you and me, the space between us and them, the space passage of time creates, the difference between where we started and where we have gotten to, the space between understanding and not. Intentional spaces, ideological spaces, physical spaces, metaphorical spaces. It’s a word that I think sometimes encompasses much of the disability experience, because there always seem to be more distances we have to deal with.

Counter-Indicated: A visual representation of the distance between the various pieces of medical equipment I am supposed to be using; the buff colored wrist-brace with thumb immobilization can't be worn with the blue forearm crutches. The top of the left crutch and the bottom of the right crutch lean diagonally across the white canvas, trapping between them the buff wrist brace. Created by Kali, copyright 8/22/2010

Without any further ado, I bring you this month’s blog carnival.

From Maggie World, written by the ablebodied mother of a young woman with multiple disabilities, we have A Game of Inches. This post is about how physical distance, physical space can be incredibly important to creating and maintaining accessibility for someone in a wheelchair, using an accessible vehicle.

From Spaz Girl, a teenage girl with spasticity, we have The Importance of Crip Community. This post is about the importance of having a community out here, in ‘our’ space, where we are distanced from ‘their’ space. She talks about the way crip community helps us invision our futures, which are hard to see when all the role models we’re presented with are able-bodied.

From Lene at The Seated View, we have Bridging the Distance, a post about the way sometimes, people who do not have disabilities can expand their understanding and ‘get’ how important accessibility is through events in their own lives.

From Astrid at Astrid’s Journal, we have Then and Now: On Changing Abilities, and Why those Don’t Make Me Fake, a post about how changing over time does not necessarily mean increasing or decreasing disability. Sometimes, all it takes is a change in circumstances to create an apparent distance.

From Hand To Mouth, we have Assistive Technology and Accessing the Digital Divide. This post discusses the distance between how far accessible technology has come and how much technology most people actually have access to. How frustrating it is, to know that we have the ability to allow people to access the world in previously unprecedented ways, and yet we’re held back because the necessary tools aren’t spread widely enough. As the blog said, the bridge is so dear, so tenuous, as to be almost frightening to us on this side of the divide. How easily we could lose that access that we had to work so hard to obtain. And yet – and yet, does the chasm have to be so wide?

From Rightfully Deviant, we have The Community Imperative, a post about finding a crip community where you aren’t at a distance, a place where you and your disability just…fit. Just make sense. Don’t need to be justified.

From Amanda at Ballastexistenz, we have Distance Underthought, a unique post – a painting and an explanation of it that talk about distance and lack of distance where there is…understanding…among those of us on the other side. I don’t want to talk too much about this, because I very much liked her description of the ideas in the painting.

From Yasmin at Damn the Muse, we have So What Do You Have…, a post about a great interaction between her and her new neighbor/friend, that shows that we don’t have to be at a distance if people don’t treat us that way.

From In My Eyes: Life with Cerebral Palsy, we have From the Other Side of the Window, a post questioning film and life interpretations of kids with disabilities.

Finally, my own post. The Space Between is about the way the media creates greater distance between people with disabilities and people without disabilities using a handful of tropes that we see over and over and over. How much this distance could be closed, if the media would just let us tell our own stories in our own words!

Well, that’s it for this edition of the Disability Blog Carnival. I hope you’ve all enjoyed the ride! I sure have.

~Kali

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The Space Between

There is this space that exists between most people with disabilities and most people who don’t have them.

The trouble is, that space is mostly filled by media talk about disabilities, which create some very standard lines about what it means to have a disability. I think there are 6 basic lines of approach: person ‘overcomes’ their disability and triumphs; disability is So! Tragic!; caretakers for people with disability carry unbearable burdens and are angels if they carry it successfully; person with a disability is an angel (especially if they are mentally handicapped) nor “put here by god to teach a lesson”; person with a disability is cured (by hard work, by modern medicine, by non-Western medicine, by prayer, by meditation, by being positive, you take your pick); and people who do not have disabilities can imagine what it’s like to live with one.

But let’s break these down, shall we?

1) Person overcomes their disability.
Er, no. See, the thing is, a disability isn’t like a traditional horse handicap. Horse handicaps worked like this: the horse who was supposed to be the better racer had weights or distance added to try to even up the race. The goal of a handicapper was to get the horses to finish as close to the same time as possible. A photo-finish (that is, where the finish is so close a picture of the horses crossing the line must be examined to figure out who finished first) is the triumph of a handicapper.

We’re not like that. We aren’t carrying around some mystical extra weight to slow us down, nor are we running longer distances (most of the time – don’t get me started on how much longer accessible routes tend to be!). We’re just different. We do things differently. I don’t open jars with my bare hands, I have a tool that grips them and makes them easier to turn. I still get the jar open, just using a different method. I know of a number of people in wheelchairs, or people with dwarfism, who have lowered counters in their kitchen so that it’s accessible to them. I take the elevator instead of the stairs. Right now, with the newest knee injury, I get around on an electric scooter instead of on my feet. It’s just different.

If you want a handicap like the traditional horse handicaps, try looking at lack of accessibility! The number of stores you can’t get into on wheels, the ramps that are canted too steeply to be used safely, the way tilted sidewalks make it harder to move, the way handicapped accessible routes mean around the side or the back instead of up the front, the fact that we have to do better than our able-bodied counterparts to get the same jobs, and so on, then yeah, maybe we’re dealing with a handicap. It isn’t our bodies that make them, though. I’m not triumphing over my disability; if I’m triumphing over anything, it’s society’s views of me.

2) Disability is So! Tragic!
Let me say right off the top that while disability isn’t tragic, the process of becoming disabled (say, via a car accident) can be. It would probably be more accurate to say that it’s traumatic, though. It’s really damn hard to adjust to a new disability. That doesn’t make disability a tragic thing, though; that makes accepting new limitations and figuring out ways to deal with them hard, and it makes dealing with societal views of people with disability really tough to swallow.

I’m not saying that it isn’t hard to adjust. It is. Just like it’s hard to adjust to living in a new country when you haven’t learned the language and culture first. You have to figure out how the locals do things, you grieve for things you had in your old country but don’t have now, you have to figure out how to express yourself in different ways, and you have to break down all your old ideas about what that country and its people are like. So it is with disability.

If disability can be seen to be tragic at all, it is because of the way people with disabilities are treated. Social Security for disabled folks keeps them below the poverty line. Places aren’t accessible. Abuse happens to us at a higher rate because we’re seen as less-than. It’s harder to get, and keep a job because employers also think of us as lesser beings. There isn’t the kind of community support we need. Too many people think of accomodating people with disabilities as giving us special treatment. The Americans with Disabilities Act passed 20 years ago, but we are still not really equal in most people’s eyes.

The most tragic thing about disability is that because disability is viewed as tragic, murdering us is often excused or given a ridiculously light sentence.

3) Caretakers carry unbearable burdens and are angels if they do it successfully
Arrite, let me say first off – some 20% of people have a disability in my country; more in countries where there are things like landmines or severe environmental pollution that cause higher rates of disability. If taking care of us were some unbearable burden, then I think most of us would be homeless or suffering from terrible, chronic abuse – far more than actually are. Yeah, we have a higher rate of both of those than folks who are able-bodied, but it’s still only a fraction of the disabled community.

Now, I’m not saying that caretaking is easy. Even my easy-going, big-hearted boyfriend gets fed up with it occasionally – usually when it’s midnight and time for yet another late-night hospital trip. It is a lot of work, and the world as a whole does not give enough recognition for the hours our families and loved ones and employees put in. My aide isn’t paid even half what I think she’s worth. I think that family caretakers deserve a ton more respite care and financial support than they recieve. I think good caretakers are great people and should be respected for that…but I don’t think they’re angels. I think they have good and bad days just like the rest of us. I think they make choices and sacrifices like the rest of us, though those sacrifices are usually larger than the average. I think they’re human beings with a tough row to hoe.

Part of the reason I’m against calling them angels is that it says that only very few people can do it. And that’s not true! I think most people could be caretakers if adequate support were available. It also says that people who are caretakers don’t need support, which I think is even more untrue. People who are caretakers have more stress than the average person, so they need more support – family and friends who are willing to help and to talk, governmental support for respite care and aide hours, financial support to ease the cost of helping us.

The other part of the reason is that saying we’re an unbearable burden excuses abuse. People with disabilities are abused at a sickening rate. Why? Well, I think it’s a combination of a few things. First off, most abusers pick targets that are not as highly valued as they are – people with disabilities, children, women, and people who are trans*. Second, most caretakers do not have adequate support, especially in terms of respite care. Third, as a society, we have said that it’s excusable to abuse and kill people with disabilities because their lives are tragic and they’re huge burdens. It excuses teachers who abuse disabled pupils because “they aren’t trained to handle them”. It excuses aides and institution workers because “the work is just so stressful”. It excuses family caretakers because “they have to work so hard to take care of them”. It excuses murder because our lives are seen as having less value, especially if the person is mentally handicapped or has a terminal condition.

4) Person with a disability (especially mental handicaps) is an ‘angel’ or “put here by god to teach a lesson”

Wow. Yeah, that one just blows me away. The fact that someone is disabled doesn’t make them an angel, any more than a caretaker is an angel! I’ve witnessed plenty of kids with disabilities throwing tantrums. I know that living treated as a lesser being is enough to make yours truely rage pretty good sometimes. We aren’t angels any more than the next person. We don’t have some divinely kind and understanding souls, we’re just like you, but with a disability. And being of less than average intelligence doesn’t grant a serene disposition.

Now, for people who call all kids angels, I suppose I can sort of understand why they’d want to call kids with disabilities angels, but please consider that it may be construed that you think people with disabilities are angles and might just piss someone off!

The ‘here to teach a lesson’ bit is one that particularly riles me. I’m not your freakin’ lesson! I’m a person. Hey, once again, just like you, but with a disability. And perhaps a few less prejudices, if you see me as a lesson! If you treat me like a lesson, you’ll get one you deserve – that I have a temper! I am a person. I’m here for the same reason you are, whether you believe we’re all shaped in a creator’s image or whether you believe we’re just the most successful genetic mutation. People with disabilities aren’t put here by some greater being to teach patience, kindness, equality, or any other virtue you might associate with us. (though let me tell you, a great many of us would like to teach TRUE equality. In my experience, people who speak of someone with a disability demonstrating equality tend to mean that all souls are equal, not about equality in treatment, in housing, in funding, in hiring, or in any of the ways that people with disabilities are discriminated against) We are just people. We just exist. Same as you. Same as everyone else.

5) Person with disability is cured
Here’s a cold hard fact for you: most people with disabilities cannot be cured.

Hard work won’t cure a disability. It may teach you to cope with the disability in such a way that the disability is not obvious or is no longer difficult to deal with, but it doesn’t get rid of the actual disability. Even though I learned to spell by rote, I’m still mildly dyslexic. My spelling is far better than average because of the way I had to learn it, but I scramble things like phone numbers on a regular basis.

Contrary to the Zoloft commercial where the sad, depressed head bouncing around turns into a happy smiley head, medication doesn’t fix everything. It can help, but most of us don’t get fixed by a pill. And when you get to physical disabilities, the rate of ‘fixed by a pill’ or a surgery doesn’t get much higher. There aren’t many disabilities that can be fixed by surgery.

I believe in the power of healing energy and prayer and whatnot, but I don’t think they can make the body fix things that are impossible to fix. I think that if anything, they make the possible happen more effectively. The same for meditation and thinking positively. None of that will fix my genetic cartiledge defects, and to be frank I’ll get quite snippy if people start trying to push their prayer cure.

6) People without disabilities can imagine what it’s like to have a disability.

Um, no. No and no and no. First off, you can’t imagine what it’s like to have my disability because you can’t wrap your head around how pervasively it affects my life. It comes down to everything, even the way I hold my hands to type and brush my teeth, how I lay to sleep at night, what clothing I choose to wear. Secondly, you can’t imagine how I’ve adapted to it. When I busted my knee the first time, I hit the point where I could carry a tray and use crutches the first time within a couple of weeks. Humans are amazingly adaptable creatures – it is the greatest strength of our species. If I could learn something that required that much concentration and coordination that quickly, how much do you think we adapt to years of living with our disabilities?

If you sit in a wheelchair and push yourself around a bit, you’ll understand how much muscle you have to develop to easily push yourself around all day…but what most people will ‘learn’ is how hard it is to push yourself when you don’t have that muscle! (in all likelihood, they’ll have you sitting in the heavy hospital style wheelchairs that are really meant to be pushed by someone else instead of the low-backed, low sided, lightweight chairs that most people with disabilities use) Borrowing my forearm crutches may make your arms sore, but it only takes a couple of weeks on them to get used to it. Trying to wander around with blinding goggles or a blindfold on doesn’t teach you what it’s like for a blind person to navigate, it teaches you that you don’t know how to. I really, really hate those ‘disability’ demos that pop people into different kinds of adaptive equipment. All people really learn is that they don’t know how to use the equipment we live with, but they THINK they learn how hard disability is. And then they pity us. Yet more space that puts between us and them.

The space between people with disabilities and people without could easily be narrowed by real disability narratives – our stories, told by ourselves. How much better we might be understood with a few less ‘wheelchair bound’ narratives and a few more ‘wheelchair using’ stories! I wish that people could see Paralympic athletes as what they are – people who have trained and are at the peak of fitness and skill at their sport, instead of ‘poor crippled folks who have overcome their disabilities’. We overcome nothing but societal prejudice, and work WITH our bodies! One of the first things we have to learn is to stop fighting our disability and adapt to it. But your average journalist has never had to learn that, and doesn’t have the training to listen to us explain it. As long as our stories are told by people without disabilities, people who can’t really understand us, this gap will continue to be, and we – people with disabilities – will suffer for it.

(updated to add, whoops, I forgot point 4)

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Sex and Disability – mental

Right, so my first sex and disability post was about how sex works with my physical disability. As I’m sure many of you are aware, I don’t just have physical disabilities, I have mental illness, too. I’m bipolar. Specifically, I have bipolar II. That means that I don’t have ‘true’ mania, I have hypomania. Hypomania tends to manifest as this kind of overwhelming exhuberance, intense goal orientation, less need for sleep, bit thin-skinned, and…pushy.

Now, bipolar and sex is kind of bewildering because the way bipolarism interacts with sex depends in part on where in the cycle you are.

When I’m on an even keel, which is where I spend most of my time, I like sex. I love my boyfriend. So we have a pretty normal sex-life, other than all the fun my physical disabilities bring into it.

When I’m hypomanic, I don’t just like sex, I need it. I crave it. I want sex badly enough to ignore physical pain to get it. I also tend to want more physically intense sex – kinkier, more forceful, so on. Between the frequency I want it and the intensity I want, I tend to end up very, very sore. Which, if I’m still manic, isn’t enough to stop me from wanting more – it just means that when we’re done, I’m going to wince. I’ve had it get bad enough that I want to curl up in a ball around my aching crotch and whimper. This, unfortunately, makes the boyfriend feel really bad even though it’s entirely my fault that I ended up that way. I theoretically know that it’ll cause pain, I just don’t care. Er, at least, I don’t care until we’re done and the pain hits.

If I’m depressed, my relationship with sex gets more complicated. On the one hand, it makes me feel good, and I’m in need of feeling good. It also makes me feel loved and closer to the boyfriend. On the other hand, I have this great inertia that makes me not want to do anything, much less something that takes as much effort as sex. In general, that means that I settle for being almost clingy with my need to be cuddled – cuddling takes a lot less work than sex, and it still makes me feel loved and it feels good, though not as good as sex. I suspect that depression is part of why I so often fall asleep curled up around my boyfriend. I can’t sleep that way – sleeping is something that must be done very carefully, on a thick memoryfoam topper, wrapped around a body pillow just so, with my pillow pushed and pulled into the right shape. If I sleep curled up around my boyfriend, I wake aaaaching.

The depression is even more complicated than that, though, because of the way it makes me feel about myself. It makes me feel ugly and fat (in a bad way, not the usual ‘yeah, I’m fat, so?’), and utterly undesirable. The fact that my boyfriend thinks I’m the most desirable woman on the planet doesn’t even make a dent when I’m feeling like this. The space between myself as a sex object and the way I see myself when I’m depressed is so incredibly vast that I don’t have words to describe it.

That’s not to say that our sex life is always at one of these two poles – I’m not always wanting more than my body can handle or none at all. Most of the time, I’m neither manic nor depressed, so if my body is behaving, things are…normal. We’re a twenty-something couple that love each other. (haha, not for long, the boyfriend turns 30 this month!)

The thing is, when you combine the physical issues with the mental ones, our sex life gets…complicated. It’s nothing we can’t deal with, but that’s the thing – you have to deal with it. It’s something a non-disabled couple doesn’t have to worry about. Like everything else in my life, sex means figuring out how to do things in a way that works with me, not against me. Life is definitely more complicated when you’ve got a disability, and I’ve got a whole mess of them!

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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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