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Archive for November, 2009

Questions

I’m heading into my 2-week long exam period here. In light of that, I know I’m likely to be a little slower than usual on coming up with original material to write about.

Because of that, I’m opening the floor for questions. Want to know more about living with EDS? About me or Hudson? About working with a service dog? About becoming disabled in your 20s? About law school? …about anything else you think is relevant that I might know about?

ASK AWAY!

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His day, my day

One of the things they don’t tell you when you’re looking to partner with a service dog is how much your dog’s bad days will affect you.

In a way, your service dog becomes a part of you. Any person who works with a mobility aid – a cane, a wheelchair, crutches, a walker – can tell you that this is true of your mobility aids, as well. They’re both an extention of yourself and something that has great effect on you. When your mobility aid gets damaged, or doesn’t handle well in the weather, or isn’t suited to the ground surface, you suffer. There’s a period of adjustment with any new aid, where you have to figure out how it fits into you physically and emotionally.

All of that is true with a service dog as well, with a huge addition: your service dog is a thinking, feeling being. That fact makes the relationship enormously more complex. A cane doesn’t feed off my emotions, but Hudson does. A cane doesn’t get bored, but Hudson does. A cane doesn’t want to learn new things, but Hudson needs to.

A cane also doesn’t have bad days. Hudson does. He has days when he just doesn’t feel like it. When he wants to sniff and chase, not do service skills. When he doesn’t want to get out of bed, much less into his harness and working. When he’s feeling skittish and scared. When he’s hyper. When he’s sad. As I said, Hudson is a thinking, feeling being.

At first glance, I’m sure it seems like a small thing. Okay, so the dog is grumpy. So what?

Let me tell you what my day is like when Hudson is having a really bad day, super nervous and hyper:

I get out of bed, and we start our ‘good morning’ routine. It’s always kind of goofy and playful. Hudson doesn’t like getting out of bed, but once he’s up, he’s a silly dog indeed. Well, when he’s hyper, he can get a little too rough. Sometimes that means he’ll catch me with his teeth. Others, he’ll slam into my legs or hit me hard enough with his tail to bruise me.

That may not seem like much, but it can be to me. It can mean aching for the next hour or two, or even having a kneecap or shoulder pulled out of place. If Hudson does get rough enough to hurt me, I have to stop the goofy good morning routine, which is almost worse. I don’t wake up well, so this playful wake-up is as much for me as for him, and having to forgo it is…dissappointing.

I get dressed. When Hudson is really in an excited mood, he insists on sniffing my clothing before or as I put it on. It can throw me off balance as I try not to kick him while putting my pants on! So far, there haven’t been any actual injuries, but it’s been close a few times.

We go into the bathroom. When he’s raring to go, it can be a little hard to get him to hold still long enough to help me sit down on the toilet and get back off of it. He’ll be sniffing at the door, ears perked up, wanting to go go go and not being thrilled with being in the little bitty bathroom.

We head downstairs. I’ve gotten into the habit of sending him downstairs in front of me, because if he starts behind or next to me, sometimes he rushes past me and I’ve nearly fallen from that.

I send him outside into the back yard to do his business. Instead of heading to his box and going, he wanders around the yard sniffing. *sigh* Hopefully, this isn’t a day I’m running late, because if it is I’ll have to try harder to get him into the box and going. Even if it’s not a day I’m in a rush, I have to stand there in the doorway, with the door open, so it’s rather cold. The passageway leading to the door is narrow enough that I couldn’t put a chair there to wait for him, even if I thought that would help.

I eat my breakfast, and go to feed him his. He’s excited, so he doesn’t want to pick up his bowl, he wants to play with it. It takes more standing and more coaxing out of me to get him to pick up his bowl and hand it to me.

He eats, and then we go to get him dressed. Except he’s all wound up, so he doesn’t want to get dressed and makes that quite clear. I have to clip his leash on and hold him in place to get him into his harness, which means he’s pulling against my shoulder, my hand, my back.

Let’s say we’re headed off to a doctor’s appointment today. My doctor is downtown, where parking is lousy and it’s always busy. Hudson is happy to get in the car, and ride around, and get out, but once we’re there, oh, he’s NERVOUS.

He tugs me this way and that, rushes me a bit, which hurts. My shoulder, my hand, my back…it hurts. And this slows things down, because I have to keep stopping and correcting him, making him walk at my pace, try to get him centered on me instead of the Oh! Exciting! World! around him.

This is when it feels like I’m walking with a 2 year old. Aaah the bus is scary! Ohmygod what’s down that grate? I don’t like puddles! Yikes that bag crinkled at me! I want to sniff this thing now! Ohno that thing moved when I stepped on it! The door is going to get me! Everything is exciting, interesting, or scary. Everything makes him react, from going down almost onto his belly in fear to look down into the grate (which yanks his support out from under my hand) to leaping over puddles (which yanks me forward in a lurch).

We get to my doctor’s office, and he flops himself as close to the middle of the floor as he can. I try to get him to come under my chair. He’s not having it. Because I gave him the command, I have to make him follow through, so I have to pull on his pinch collar until he finally relents and puts his hindquarters under my chair. I’m tired enough from fighting him that I count that as a victory, even though I know he could get about 2/3 of himself under there if he’d just obey the command.

He’s still trying to sniff everything and everyone. When my boyfriend leaves to feed the meter, Hudson stares after him. I try to get Hudson’s attention, but he keeps breaking from what he’s doing to look down the hallway where the boyfriend went.

He finally calms down somewhat in the exam room. He flops in an awkward spot, and jumps up when the door opens, but he’s doing enough better that I don’t try to correct him too hard, just a verbal reminder that he’s supposed to be down. He tries to sniff the doctor, and then finally subsides.

We finish up with the doctor and head out. Hudson is very excited to see the boyfriend, and pulls on me to try to snuffle at him. I tell Hudson to leave him alone, and we head towards the elevator.

Despite the fact that Hudson rides elevators every day at school, today he has decided that they are scary and trying to get him, so he doesn’t want to go in. Every time the doors open, he tries to start walking out. Fortunately, we are only on the third floor, so it’s just one false start today.

Back out onto the street we go, and once again he’s tugging me every which-way, for all the reasons I mentioned before. Scary! Sniff! Let’s go! Not going there! Oh look!

We get back to the car, and I’m exhausted. It’s hard on me when he’s so twitchy, because I have to spend so much energy trying to get him to be properly supportive and responsive, and it takes so much out of me to be pulled on. I hurt. I want to go home and lie down.

So that’s what happens. We go home, and I go upstairs and lay down in my bed. He walks around the bedroom a bit, and stands near the door, listening for sounds of my boyfriend moving around in the house. Hoping to get out. Finally, he settles down right in front of the door with a disgruntled sigh. I call him to me, and he comes near enough to just barely brush against my outstretched hand before he turns around and flops on the ground, clearly sulking.

He sulks most of the rest of the evening, because he wants to Do! Something! and I have work, or I don’t feel well and need to stay laying down, or I just want to read and relax after the very trying expedition to the doctor’s.

So that’s one kind of really bad day for us – one where neither of us is happy and we’re probably feeding off of each other. His bad days are my bad days; my bad days are his. Yes, he gives much more support emotionally and physically than a cane does, but unlike a cane, he has days where he just can’t or won’t.

I’d love to pretend we had this perfect partnership where things always went right. For the most part, things really are pretty damn awesome, though Hudson does spend a fair amount of time being bored because I’m working. But that’s part of being a service dog, and in being a service dog he has the one thing I think he needs most – he’s never alone.

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So, I had a teaching moment yesterday. It probably would’ve gone better if I hadn’t had a searing headache from the EEG, but nonetheless, I saw an opportunity and I figured I might as well take it.

I was at a hospital, having an EEG done, and afterwards I was wiped out with a severe headache, so I opted to call a cab rather than take public transit home. As I was waiting in the lobby for the cab to arrive, as the weather was unpleasant, I noticed a group of student nurses gathering. They had taken over one wall of the lobby, chatting about this and that, and I found myself thinking…this is a teaching moment.

I didn’t offer to talk to them about dealing with complex patients, or patients with rare illnesses like my own. No, I offered to talk to them about how to handle a service dog team…and how not to screw it up!

I know I’ve mentioned in my first piece on service dog etiquette that many people make all kinds of errors in dealing with a service dog team, but it surprised me how many of them I face in hospitals and doctor’s offices.

The doctor who always stoops to say hello to my dog before he talks to me. (If he wasn’t a hard to replace doctor, I’d have a talk with him about it, but he’s of a specialty where I can’t afford to alienate my doctor)

The nurses who tell me that the dog is just fine where he is, and then struggle to straddle him or reach equipment across him, making all three of us uncomfortable.

The doctors I’m seeing for completely unrelated specialties who ask me what purpose the dog serves.

I told them, one of the worst things you can do to me the patient is start asking me about my dog instead of asking about me. Once you’re through with your questions about me, I might humor a few about the dog, but that is getting a little off base and a little personal.

I talked about the wide range of things that serve as distractions for a dog. Most people just think petting the dog is bad, but I’ve had a nurse try even that! (What made me especially mad was that it was a sneak-pet as he walked by me in a hallway, and then told me not to bite his head off when I said ‘Please don’t!’) More often, it’s subtler distractions that medical professionals – just like everyone else – are guilty of. I pointed out to them, my patches on my dog don’t just say ‘don’t pet’ – they say ‘don’t pet or distract’ and I told them that distracting him is in a very real way endangering me.

I also told them hey, I’ve got a sense of humor about him most of the time. When you live with a service dog, you kind of have to! Everyone wants to know, everyone wants to ask, and a great many people want to share their stories or tell you how handsome your dog is.

I mentioned that it’s easier on all of us if you tell me if the dog is in the way – it’s really easy to move him, but it’ll make him and I both nervous if you reach around or over him awkwardly, and it’ll make your job harder.

And then their instructor asked what I thought was a good question. He pointed out that I had a service dog, not a seeing eye dog, and asked if I could explain what a service dog does for a person, since they probably weren’t familiar. So I talked about Hudson in particular and service dogs in general, and then excused myself as my cab had just arrived.

It probably wasn’t the best talk I could’ve given. However, it was kind of spur of the moment, and I had a monster of a headache, so all things considered I think I did okay. I know that to many people, seeing a service dog out in the ‘real world’ can be exciting, but I hope I’ve reminded them to treat their patients as humans first, patients next, and not as curiousities!

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Nnn.

I have class in 4 hours. I’m to present the opening argument for a very complicated case, which means I need to come up with a theme, a feel, an idea about why this case should go the way I think it should.

It’s hard. It’s the most complicated piece of work we’ve seen all semester. I don’t know which of the witness’s statements to believe. I don’t know who the gun belongs to, or whether the bar owner was handling bets illegally in his bar.

And worst yet, my brain just won’t…start. It feels like I’m sitting in a car, turning the key and hearing the starter going but the engine just won’t catch and turn over. Again and again and again and…nothing. No spark. No roar into life. No flash of inspiration, of understanding. No ideas. Nothing.

I’ve spent far too many hours stuck in this mire since the maybe-seizure things started. It’s counterproductive, frustrating, and there’s not really anything I can do about it. I’m stuck with this brain that won’t go, wandering through this gelatinous fog of un-thinking, un-reasoning, un-being.

Of all the things you can do to me, taking away my ability to really THINK has to be the most painful for me. I’m used to living in this ache-ridden, fragile body, and the pain is something you cope with, but my mind…oh gods, don’t take my mind. It is bad enough to be a thinking mind imprisoned in a broken body. To be a dull and confused brain inside a broken body is entirely too cruel.

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Well, I had the first maybe-absence-seizure in class yesterday.

The professor was talking, I was taking notes, and suddenly the professor was talking about some different facet on a different slide about the same general subject. Mid-sentence, as far as I remembered.

Which I’m sure isn’t right. That professor tends to be pretty coherent and organized, and she goes through her slides in order. The fact that it wasn’t the same slide in her Powerpoint is what decided me that yes, I really must have lost time. Again.

Blah.

This has just been a rough week. I’ve now had either 2 or 3 migraines (depending on whether you count a migraine returning circa 6 hours later as a second migraine) and 2 absence seizures since Thursday.

I am, at this point, seriously considering taking a medical withdrawal for this semester. This is not the first time I’ve been pushed to that point. Having accepted that it may be necessary has been kind of liberating; I’m not panicking about the reading that isn’t getting done because I can’t concentrate well enough to make sense of it. I just haven’t made the actual decision to pull the plug on this semester yet.

Oh bother, I just realized I haven’t told you guys about the appointment with the neurologist Friday.

There unfortunately isn’t much to report. They aren’t sure what it is. Maybe it’s absence seizures, but they don’t quite fit the profile – most of them are much too long. Maybe it’s some form of structural problem in the brain, but my MRI a little less than a year ago is clean. There’s some potential for it to be a problem with a blood vessel, the possibility of which becomes far more likely when you consider that I have family history of brain aneurysms. They’ll be doing a MRA – that is, a magnetic resonance angiogram, a map of the blood vessels. I’m also to have an EEG done, but they aren’t terribly hopeful about catching the activity as these things are only happening about twice a week.

The nuisance here is that I am not allowed to drive until we know what is going on, and they won’t have me back for 3 months. So here I am, stuck without being able to use my car, as my northern city slides into late fall and winter. I miss the temperate southern climes I grew up in, where frost was the worst you could expect on the coldest of mornings.

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