Archive for April, 2010

Inadvertent humor

We all have them. Those things we say, those things we do, that just end up unintentionally funny.

Now, for this first one, you have to understand a few things. First, ‘lame’ is a disability-related pejorative I decided a while ago to excise from my vocabulary. Second, ‘lame’ is probably my father’s favorite pejorative, so one I grew up hearing whenever he didn’t like something or thought someone was behaving stupidly. Third, the boyfriend never says the word ‘lame’ – it just isn’t part of his day-to-day vocabulary.

So this evening, we were talking about something, and without thinking, I exclaimed, ‘That’s so lame!’ I froze as I realized what I said. Damn it damn it damn it, I did it AGAIN. As I froze, the boyfriend started cracking up, and I couldn’t help but join in. I KNOW this word is problematic. It’s actually very high on my most-hated-word list. And yet, time after time, I catch myself saying it. (I suppose I should be glad that I almost always catch myself. The boyfriend is good enough to point out to me when I don’t notice.)

This gets funnier because since I’ve known the boyfriend, I’ve made a concerted effort to swear less. I’m not very good at it. But you see, he rarely swears, and his parents just DON’T swear (and his parents are very religious, so ‘damn’ and ‘hell’ are not said as well), so I figure it’s for the best that I learn not to. Not to mention the fact that it’s inadvisable professionally. Now, what do you suppose I do when I realize I’ve said ‘lame’ as a pejorative? I start swearing. *FACEPALM* Sometimes, you can’t win for trying, and just have to admit that you fuck up. Er. Screw up. Um. No, wait. Mess up. Yes. That’s what I meant. Not ‘fuck up’, because I’m trying not to swear. Shit, this is hard. Agh! Damn it, I swore again! And now I’ve said ‘damn’. *HEADDESK*

The other moment of inadvertent hilarity was, likewise, entirely my fault. Poor Hudson’s ear infections haven’t gone away, so he’s now on an oral antibiotic as well as being treated with an ear cleaner and an in-ear antibiotic. The in-ear antibiotic has to be shaken. Because I’ve been sick, dizzy, and generally feeling like hell due to MY ear infections, the boyfriend has been doing Hudson’s ear treatments.

Tonight, the final night of his 3rd round of ear treatments, the boyfriend washed out Hudson’s ears, and went to put the in-ear antibiotic in. I noticed he didn’t shake it, so I said ‘Ah-ah,” trying to stop him from applying it. Unfortunately, that’s also the exact same sound I use to correct Hudson. Hudson was leaning away from the boyfriend, so the boyfriend assumed (quite reasonably) that I was correcting the dog for something and kept moving towards putting the antibiotic in Hudson’s ear!


In my rather dazed and muzzywitted state, I had to manage to come up with actual real words to explain to the boyfriend that he needed to stop. I somehow found them, thankfully, so Hudson’s ointment got shaken before it was applied, but it was a very near thing.

Yeah, we both had a good laugh over that, too.

Ah well, at least we can prove we’ve still got senses of humor.


Read Full Post »

I have to admit, when it comes to exam time, I have spectacularly horrid luck. I mean really, really bad.

My first year, my roommate was going nuts on me during my fall exams. I got food poisoning during the spring exam season.

My second year, I sprained my back during the fall exam season. Despite a SUPER flexible dean of students who worked with me a lot, I was only able to take 1/2 of my exams.

That spring, I wound up over-extended due to MAD migraines and had to drop a class about halfway through.

This fall, things were…relatively peaceful during exam time, if you ignore the major migraine I had the night before my Trial Advocacy ‘final trial.’

And now we’re back to spring. As of going to the doctor’s today, I officially have a sinus infection and a double ear infection. Gee,
wow, just what I always wanted.

I was supposed to be taking an exam tomorrow, but right now a stiff wind could knock me over (literally), and campus is a windy place. I’ll be taking my exam on Monday, which will put it a little closer to the Friday exam than I’d like, but what’re you going to do?

I joked with the exam coordinator that I had to be the most unlucky law student they’ve ever had. He said they were giving out a grand prize. Hah, if they give a prize for THAT, I’ve got to be in the running!

…ah, if only I got official recognition for all of the unrelated SHIT I’ve gone through trying to get through law school…

Read Full Post »

Blogging Against Disablism Day, May 1st 2010

On May 1, I’ll be joining in on Blogging Against Disableism Day 2010.

Please, join in! Write about how ableism affects your life, write about the idea of ableism, write about your thoughts on the artificial border between 'ablebodied' folks and people with disabilities, anything you can add to the conversation.

The only way to defeat ableism is to take a stand against it. Join me and many fantastic bloggers in working on breaking down this barrier.

Also, May is EDS Awareness month! I'll write a special post for that, and I would very much appreciate it if you would link in your journals so that we can increase the knowledge people have of this rare illness. If it were not for people online providing me information about EDS, I probably would have never been diagnosed. Let's spread the word!

Read Full Post »

Tonight, for our final class of the semester, our professor (who is Chinese) took us to a Chinese restaurant in Chinatown.

Hudson and I took the El there, which the dog was decidedly against. I think I’ve mentioned before that he does not like anything bigger than a car and mechanical, and especially not train-like objects. He especially does not like getting on at an above-ground station. He was panting with anxiety when we stood on the platform, and spent the entire journey popping up at every stop in the hopes that we could get off NOW.

Anyhow, so we eventually got there, and we settle in and eat. The professor invited several attorneys to come join us, so we could pick their brains about working in the field they worked in. It was a very congenial (and delicious!) dinner.

The boyfriend came to pick me up afterwards. He’d’ve taken me there to begin with, except that he was at a dinner for graduating grad students at his school.

As we were walking to the car, we walked past some of those lion statues you see outside of some restaurants. Hudson came to a halt, terrified enough of the statue that he was cringing, his belly almost touching the pavement. I walked closer to the statue, letting him stay at the end of the leash, and started praising him and encouraging him. I got NOWHERE.

Then, I had a moment of inspiration. I started petting and praising the statue.

Hudson got over his fear of the statue in record time. Suddenly, it was just interesting! He sniffed it enthusiastically, and I praised and petted him generously.

The boyfriend looked at the numerous statues we still had to walk by, and said, “It’s going to be a long walk!”

Hudson, however, had gotten over his fear and was just fine. He wanted to sniff each of the statues, but there was no more fear.

I guess I just have to convince him that everything is a good dog, and he’ll be okay?

Read Full Post »

So, between a friend and my boyfriend, I’ve had a pretty good ‘duh’ moment.

I mentioned before that because of the way my insurance is handling things, I’ve had to go on a pain medication patch twice as strong as what I was on before. Now, these patches look a little bit like the clear plastic nicotine patches for someone trying to quit smoking.

So my friend today asked, why don’t I cut a quarter of it off, so that I’m only going up in dose by half as much?

Wow, thought I. This is an incredibly simple fix.

When I mentioned this to my boyfriend, he asked why I couldn’t just cut the patch in half and apply half of one every 2 days – effectively doing the same as what my doctors and I had originally wanted to do.

Oh. Well. DUH. Why on earth not?! We’ll have to test it out and see how it works, but as long as the glue doesn’t develop a problem if it’s opened but not applied until 2 days later, this is a perfect solution. I get the level of the drug I actually need, so that the pain is minimized but I’m not dopey, and I get to change the patch often enough that it doesn’t wear off before my next patch change.

So, the insurance may not be helpful, but a little bit of ingenuity and I’ll be getting what we wanted all along. Yay for ingenuity!

Read Full Post »

I try not to talk politics on this blog, because it’s really about the experience of living with a disability like mine and a service dog. However, a combination of the recent health care reform bill to pass and my experience dealing with health insurance companies has pushed me to post.

I’m talking about exactly one part of the bill, and I’m not opening the floor here to debating the whole thing.

One of the things that the new bill insists on is that every person must have health insurance. For people within 400% of the poverty line – which would include about 1/2 of households in the US, I believe – the government will provide a subsidy towards paying those health insurance premiums.

Now here’s the problem: we’ve created a system where taxpayer dollars will go indirectly into health care. They’ll be paid to health insurance companies. Now, what’s the purpose of a health insurance company? Well, it’s the same as any other company – to make a profit by providing a service. That means they want to maximize what they’re being paid and minimize what they’re paying out.

In short, the health insurance companies want to make sure that the least services possible are paid for while they get the highest premiums possible.

I think, in the end, it may have been more fiscally effective to expand either medicaid or medicare coverage and reform the process of medicaid and medicare than to throw all this money at health insurance companies. Set up something administered by people who aren’t making a profit off of the money the federal government is paying out.

Health insurance companies force doctors and patients to make choices that are less than ideal for their health because they’re less expensive.

I’ve just been forced through such a choice. My primary source of pain relief is a fentanyl patch that is applied every 72 hours. Fentanyl is an opioid, so it’s a drug that you expect to eventually develop a tolerance to and require a higher dose for effective relief.

Now, one of the problems with the fentanyl patch is that it theoretically lasts for 72 hours, but in practice wears off a fair amount quicker than that. In my case, it slowly starts being less effective around 48 hours, but comes to the point where it is noticibly (painfully!) less effective around 60 hours in.

My doctor wanted me to switch to using the same dose, but changing the patch every 48 hours. This would mean that instead of using 10 patches a month, I’d use 15.

The insurance company denied the greater number.

Because of that, my doctor has had to change my dosage. I’m now on twice as much fentanyl as I was before. This is emphatically not a good thing. When you take opioids long term, you do it with the understanding that they will slowly lose effectiveness, and you’ll need to increase the dosage. However, the body can only take so much opioid safely. You really don’t want to increase dosages until it’s absolutely necessary.

And so, my health insurance has made my doctor choose a less-than-optimal path for me. Why? Because the optimal path is more expensive. My insurance will pay for ER visits, and MRIs and other expensive tests, but they will not pay $80/month more for my medications, even though it is what my doctor believes is best.

Thus, there are 2 parts to what is wrong with leaving public health care in the hands of health insurance companies, both having to do with profit. First, health insurance companies will try to avoid paying for treatments, tests, and medications because the more things they can deny payment for, the greater their profits. Second, health insurance companies dictate treatment choices, and doctors are forced to obey even when it is counter to what they believe is best for their patients.

I think the better option would have been to create single-payer health care for those under a certain percentage of the poverty line. That would mean sending the same number of tax dollars into a system that does not make a profit, meaning one fewer group of people who are paid out of the same dollars. And if no one is making a profit, more money can actually go to treating patients.

Read Full Post »

Here’s one of those nasty secrets about having a disability that you don’t really understand until you royally screw it up: balancing a career and a disability is very, very hard.

It’s something I’ve struggled with personally, and something I’ve watched friends and acquaintances struggle with. Part of the trouble is that the world outside tends to have an all-or-nothing perspective on work: either you can or you can’t work full time, you can or you can’t ‘hack it’, you’re part of the workforce or you’re some bum on disability. It’s a pretty damn unflattering look at us, very ableist, and something that puts a great many people in the netherworld of not working and not being on disability.

Here’s the truth: a lot of us who are disabled can’t work a traditional, in the office, 40+ hour work-week. Some of us could do the hours no problem if we could work some portion of them from home. Some of us need some kind of accomodation, for example being able to lay down or recline comfortably, and then we’d be able to work those hours. Some of us can’t work that many hours. Some of us could work the hours if we had flex-time scheduling and could work when our bodies let us (doubly so if we had that flex-time scheduling from home).

Where does that put us? For many of us, it puts us out of work. Your average employer is deeply ableist and doesn’t believe that a person who needs accomodations for their disability will be able to contribute adequately. They don’t want to make accomodations for us, because they have this odd idea that if they change anything for me, they’ll have to change it for every Tom, Dick and Harry who ask for it. They want me to prove that I’m good enough, in a trial where I’ll be under scrutiny every minute and where my mistakes will be weighed more heavily than an able-bodied person’s. Perhaps hardest of all, often you have to ‘prove yourself’ before you can get your accomodation – unfair and illegal, but something we see distressingly often. Or at least, it’s illegal if you can get a doctor to say you need the accomodation – a whole other problem that I’ll address in a later edition.

Sometimes our accomodations are small. Having our hours scheduled in a particular manner. Not having work and training on the same day. Not being stationed in a smoking area. Written rather than verbal instructions. Space to do medication injections. A binder shoved under our feet to prevent low back strain.

Find me a law firm that will give me a recliner for my office chair, with a wireless mouse/keyboard combo and a screen that can be moved into position, and you’ll have one shocked Kali. You’ll also have a woman who can work. A woman with a damn good instinct for trial practice, according to a trial professor, and a heap of passion for the kind of work she wants to do. Yeah, I’ll still need some flex-time – it’s physically impossible for me to make it in to an office before 9:00 and that’s just how it is. But having that kind of chance…well, it’s something we don’t get very often.

Instead, we end up in positions like my friend B. Not long after B started working for her current employer, she was told that it wouldn’t be a problem that she needed to work from home sometimes, not to mention occasionally taking off for doctor’s visits, which she’d make up for later. The face her employer initially showed her was a disability friendly company that would work with her. Instead, B is finding that when she says she’s going to work from home, her boss harasses her. She catches hell about missing time at work, even though she takes home piles of work on the weekends. B is so run around and overworked that she is barely able to take care of herself, and she’s really running herself into the ground trying to keep up. Because of this non-disability-friendly treatment, she has had to quit for her health. Her boss justifies it by pointing out that they’re a small company and don’t have people to take up the slack, but the thing is that they’ve more or less broken promises to her. There’s some question about whether B could work fulltime even with accomodations; I won’t pretend like it’s just the way her office treats her. And the job is a more-than-fulltime job for an AB. The thing is this – she doesn’t really get a chance because her employer plays ball on paper but makes her life hard in reality.

It’s not always bad. Some employers really do work with us. My friend Miss Waxie, who works for a university, gets time off for her doctor’s appointments, and is allowed to borrow an office when she needs to inject her medications. She also has a boss who watches for fatigue and tells her to take off. Her co-workers give her written notes instead of verbal requests, because her memory requires it. (You can find Ms Waxie at http://www.acomiclifeindeed.wordpress.com)

Likewise, my friend M, who works in travel, has been able to negotiate work-arounds for her, though she had to prove herself first. Once she had ‘proven’ herself to her superiors, she was able to make sure she wasn’t scheduled for training and work on the same day. She keeps more at her desk than most of her co-workers, though she does get a little flack about needing to keep her desk clean. She does things in the way that is most efficient, even if it isn’t quite the same way policy or the rest of the office does it.

But negotiated arrangements aren’t always safe. G has asthma. She worked as a host in a restaurant at a resort. There were 2 positions for hosts inside the restaurant, and one just outside. The restaurant was non-smoking, but right outside of the restaurant was an open-air bar, where people did quite a bit of smoking. During the winter months, it was okay, because the prevailing winds blew the smoke away. But as it warmed up, the smoke got blown in, and G started having asthma attacks. She went to the manager, who said that G would no longer rotate to the outside posts, much to the annoyance of the other hosts. The other hosts harassed her in front of a supervisor, who did nothing about it and in fact thought they were justified in harassing her. A few months down the road, the other hosts hounded the manager into forcing her outside. G ended up having to quit the job. She probably could have fought the resort, but since the problem hinged on the behavior of a manager, she had really lost faith in her employer caring about her.

Here’s the other thing – it’s not always about our jobs working with us (or not), it’s also about us working with ourselves. My first year of law school, I was determined to go to school full time. I wanted to carry a full course load like everyone else, making no accomodation for myself! I did nothing but go to school and go home, eat and sleep. I was miserable, with a brand spanking new disability I hadn’t figured out yet and a load of classmates and professors who didn’t understand. I’d always carried a full or overload course load in my academic career, so I couldn’t admit at first that I could no longer do that. In the end, it took one professor failing me for missing too many classes and the dean of students kindly but firmly encouraging me to drop down to a part-time load to get me to see reason. And at that, it was a very traumatized, upset ‘seeing reason’. I don’t know what I would have done if they hadn’t stepped in; no, that’s not true, I know what I would have done – I would have kept driving myself into the ground harder and harder until I broke.

This entry is brought to you by something that happened recently – I made a good career choice, but a foolish health choice. I got a part-time job working for a judge this summer. I’ve worked for her in the past, so I know her office is pretty laid back. I also know I can tell her I’m working 3 days a week, and won’t be pushed past that. Now, for my physical and mental health, I know I should have taken the summer off. I’ve been plagued by severe migraines and wierd maybe-they-were-seizures. I’ve had dislocation problems, and probably need to get the majority of my braces replaced. I’ve been learning to live with a service dog, which is actually a lot of work (mentally and physically). Taking the time off would have been a much wiser choice. But for my career health, it’s much better that I not take the summer off. The legal world does not look kindly on summers where you neither take classes nor work. So…I work. For better or for worse. At least I know, up front, what I’m heading into.

Read Full Post »

On courage

This is mostly a follow-up on ‘What it Takes’.

One of the things I talked about is the idea that continuing towards our dreams is courageous. It’s something that we who have disabilities tend to think isn’t true, and as I mulled over the responses people made, I finally started trying to put together a better explanation of this.

It’s not so much that continuing to have a life, to work towards our dreams isn’t courageous. I suppose, depending on your definition of courage, it may very well be.

But that’s not the only thing that motivates us to act this way. In fact, I think sometimes this choice is less about courage and more about fear.

Fear that we will lose our selves if we lose the direction we’ve been headed.
Fear that we will be worth less, intrinsically or comparatively, if we stop.
Fear that we will lose something even bigger than dreams – our ability to dream, our happiness, the people we love.
Fear that if we stop, we will never get started again.
Fear that it will be different.

To be completely and utterly honest, I think that fear pushes me more often than courage does. I have lost so many pieces of my old self to disability that I am afraid to lose more. So many old dreams, old passions, old hobbies. So many old wants, old abilities, old certainties. I do worry about what people think of me, and how my extended family will treat me if I stop trying to work or go to school. I worry about getting isolated, losing friends and acquaintances, not meeting new people. I worry about becoming a bitter shut-in who does nothing with her life. I am terrified of being worthless or useless.

Perhaps, from the outside, my struggle to continue looks like courage. It often doesn’t feel much like it from the inside.

Read Full Post »

Every spring, my service dog organization does this great fundraiser. Here’s the way it works: if I can meet my fundraising goal, Hudson gets a whole day off. Not only does Hudson not have to get dressed in his harness and help, we’re going to do some fun activities for him. His day off will be on a weekend in June, we haven’t planned more specific than that yet

Hudson will get to sleep in! This might sound silly to you, but my goof of a partner is a real lazy boy who doesn’t want to get up until he reeeeeally has to. He likes his bed, he likes his sleep, and he doesn’t want to get up until there’s something fun to do.

Next, he’ll get some of the very much loved wet food on his breakfast. He normally only gets wet food when we’re training and he’s not willing to try (or we’re working on something he’s afraid of). To just be given some for breakfast will be a HUGE treat. It’s probably his very favorite thing to eat.

We’re going to have a picnic, and invite lots of people. Of all the things Hudson wishes he could do in his everyday life, I think he most wishes he could meet and play with all the people around him. On his day off, Hudson will finally get to sniff and greet and be petted by everyone who comes to his picnic.

We’ll bring out his pool and fill it up so Hudson can have fun splashing around and biting and snuffling water.

Hudson will get some dogsicles! They’re special popsicles made for dogs, and the pups go crazy over them. It’ll be Hudson’s first time he’s ever gotten them, so I’m sure he’ll be real excited (especially given how much he likes ice cubes!)

So here’s the deal: we need to raise $400 by June 1 for Hudson to get this day off. All money goes directly to the service dog organization that Hudson came from. If you would like to donate, email me at brilliantmindbrokenbody @ gmail . com with your mailing address so I can send you a fundraising envelope. Please, boost the signal (that is, post links to this on your own journals and websites).

Hudson says thanks in advance!

Read Full Post »