My asthma is a third of my age this year. At least for 3 weeks, anyways. Eight years ago today, I was handed a prescription for Ventolin by a walk in clinic doctor, at my second appointment with him where I adamantly refused his answer that I had “bronchitis” again.

http://i2.wp.com/farm2.staticflickr.com/1580/26429474300_9ed1a87011.jpg?resize=500%2C375&ssl=1I mean, had I been the same as I am now, I would have told him “That’s bullshit, this isn’t bronchitis,” but I wasn’t that patient yet. Although those were my first steps to becoming her—refusing the “authority” of a doctor who was about to misdiagnose me yet again.

The reality is, advocates aren’t born of perfect situations—if care were perfect, we wouldn’t have anything to advocate for. But in order to be effective advocates, we have to believe that our experiences matter, and that our stories can bring change. Advocacy is about creating something positive of the negative: it’s not reminding everybody about the shit we’ve been through constantly, it’s not about wanting to only share the injustices we’ve experienced, advocacy is not about the negative.
Advocacy is not just about me.

Advocacy is about wanting real change for ourselves and other patients. It is about the choices we can make to make our own situations better. Advocacy is about using our stories for good—finding the positive in the negative (and all that other flowery bullshit sounding stuff that is, you know, actually true)—if you don’t push through the shit, you don’t grow.

I’ve learned a lot in eight years. I’ve been places I’d never thought I’d go, and met people I never would have otherwise. Many of those things have nothing to do with asthma, but, would they have happened otherwise? I’ll never know. Eight years later, I know a few more answers, but I’ve got a thousand more questions. So, I’ll keep packing up all the inhalers I take—none of which are really new, and if they are, they’re not novel—and hitting the road. I’ve got hope that something better will come, but I’m not going to wait around 5, 6, 7 decades for it—I’ve got things to do now.

Sorry, science. I don’t believe you’ll cure asthma in my lifetime. And yep, I know pharma doesn’t have any interest in curing me anyways.
Prove me wrong, I dare ya.

Today is International Guide Dog Day! I’ve been working on this post for awhile (read: since October), but what better day to finish it and share?

Murray the service dog on his 3rd birthday

This is my buddy Murray, on his third birthday last July. I took this picture of him, a smiley-looking Black Lab in his brown leather Guide Dogs for the Blind harness sitting at a bus stop, before Murray and I were basically best friends—I’ll get to that in a minute.

Since before I started coaching goalball last October, I’ve spent a lot of time with my friends Stephen and Gerry, and their Guide Dog partners. I know better than anybody that dogs are cute and furry, and I’ve learned that they even more attractive to people when they’re working dogs and are as smart as they are adorable. As such, I’ve become that person who tells people “Please don’t pet his dog, he is working,” or informing the well meaning people who talk to Murray saying “I won’t pet him I know he’s working,” that talking to him or waving to him can be just as distracting as being touched. The guys don’t mind me doing this: they’ve both been at this for close to a decade—Gerry—or two—Steve, and I get it: it gets tiring. One thing I find never gets old, though, is hearing parents explain to their kids that Murray is a special puppy with important work to do, and that the kids are not allowed to pet him.

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Me with Steve and Murray a few weeks ago

Every person with a service dog will be different with whether or not they allow interaction with their pup while they are working—but if you really can’t resist your desire to pet the dog, ask first, and ask every time. Respect it if they say no: the dog, just like the handler, can have an off day too, where being touched may be more distracting than usual. The answer might always be no, or, it might vary—a crowded bus stop may be a no, as to not invite a parade of people, whereas if the dog is laying calmly under a restaurant table, it could be a yes (…that is, if anybody even notices the dog is there!).
And, just because someone with a guide dog is visually impaired does not mean they can’t tell when you’re petting their dog—after working with a dog for any length of time, handlers are super in tune with their dog’s movements and behaviours—they will usually be able to tell!

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Murray, who is from Guide Dogs for the Blind in San Rafael, CA, stops to say hello to a Canadian Guide Dog in the mall. (The Canadian yellow lab is a plastic donation collection receptacle!)

Working dogs in harnesses are smart and well behaved. They have important work to do. I get it: yup, for some reason, being in uniform makes the cute-factor for these pups go up about 1000% (don’t get me started on the rain jackets). It sounds ridiculous, but imagine if you went to work and all day dealt with: “Oh, a human! Here human, hi human!” all day long. You’d get distracted, too (and God, I hope nobody tries to pet you at work…). Praise and treats are how these puppies are rewarded for their hard work—working dogs are fed specific amounts at specific times of the day, and while some handlers will allow you to give a Milk Bone to their dog if they’re behaving well in a coffee shop, often the answer will be no. Just like petting or otherwise interacting with the dog: ask first. If you’d really like to give the pup a treat, you can always ask if the handler would like it to give the dog later—the dog will be just as happy with your gift when they’re not working!

The handler always sets the rules for working dogs. This enables them the authority they need to keep their service pup working hard and focused on their job—to keep both halves of the partnership safe.

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Here comes the confession, regarding my friendship with Murray.

I am a rule-breaker.
I am that person who talks to Murray and pets him when he is in harness—when he is working. The game changer is this:
I have permission. Each person with a service dog sets the rules differently about interaction with their dog—based on what is best for them and with how the dog can handle this. The way Murray responds to me is different than he responds to other people, because he has consistently been allowed to behave this way around me—he’s a smart puppy, after all. My points here are that:
a) Steve has chosen not to correct Murray for being a little silly around me or for his response to me, and
b) We are fully aware I am a potential distraction to Murray.
Murray is serious about his work—even when he’s heeling (walking on-leash on Steve’s left side, kind of like pseudo-working?) as I do the work as a sighted guide, Murray rarely does so much as look at me, and focuses on his work even though I am calling the shots. He’s still in harness, after all! We know Murray may be distracted by me—he is a dog, after all—so it is deliberate that I guide Steve 99% of the time when I am in Murray’s sight, to minimize most risks (I say most. I mean, I do on rare occasion bump Steve into an obstacle because I haven’t moved my arm back quick enough, or sometimes Steve does not listen when I say “two steps down” and miraculously does not get injured after flying down two steps… I do try to pause before descending now! Also the dog is smarter at being able to tell if branches are Steve’s height than I am.)
When I meet up with Steve and Murray (usually signalled by Murray starting to wiggle happily, wag his tail more forcefully, or pick up speed!), I will approach, say hi to Steve, give the wiggly, happy puppy a pat and a hello, usually let Murray give my hand a lick, and then I’ll move to Steve’s right (as the dogs are trained to heel on the left). Murray then ignores me when we’re walking, aside from when we have to do a u-turn and he’s forced to say hello (I presume he’s thinking “Human, I know where I am going, figure it out!” and shaking his puppy head.)

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Fair trade, I think. I occasionally use Murray as a pillow (below), for all the times he does the same to me (above).

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It’s been about 7 months now since Murray decided he and I should be besties. The running joke now is that I’m trying to steal Steve’s dog. Back in October, Murray got sneaky for the first time—he did a little Downward Dog-esque stretch, and moved toward the middle of the table that Steve and I were sitting across from each other at—nothing unusual, the dog likes his yoga. A few minutes later, though, he did it again… this time turning his whole body around to sit beside me, facing Steve.

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Laughing, I told Steve that his dog had ditched him to come sit with me. He reached down to of course not find his dog at his side, but rather a good foot away, beside me. I laughed when he tried to hand me the leash, and didn’t take it.

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Steve’s picture of Murray sneaking away to sit beside me, top, and below, my selfie with sneaky Murray.

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Just look at that face… He knows he’s up to something 😉

It became a pattern: Starbucks after goalball (picture below)—or any coffee shop, sitting on the gym floor before goalball (out of harness). As he learned Steve wasn’t going to correct him, he became less stealthy and would just stand up and turn himself around—Steve would just laugh and shake his head.

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It’s not like I let Murray get away with anything, either—nor had I even fed him a single treat when he started sneaking over to me. I love him to bits, and especially since we’ve bent the rules here, I’m just as strict on catching him doing things he shouldn’t and verbally correcting him with a “Murray, no”, or giving him a little tug on his collar if he goes after floor food, or licks his paws/boots/fur too much, or tries to sniff random people’s shoes (he has a bit of a foot/shoe fetish, that dog).

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Shoe fetish, however, does not mean Murray enjoys his boots. He tries to lose them often—probably so all the “Oh, look, that dog has boots!” people stop discussing his boots.

I’m lucky that I get to have guide dog friends (their owners are pretty okay too, I guess ;)). So, as much as I love Murray-face and as much as it’s obvious he loves me, he knows when he’s working and that I’m not going to let him get away with much besides choosing a different place under the table (or, licking my hand depending on the circumstances… there are just some places that it’s easier to let him slobber all over my hand versus trying to prevent him from sniffing/licking at every gross thing on the ground… Steve agrees!).

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Montreal in January. Nah, I don’t spoil this dog at all. Except I did make him move to the bottom/other side of the bed because, hey, that’s where I sleep.

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Someone looks comfy… Complete with a towel blanket and everything.

And, while Steve has yet to go on a trip without Murray and me since Murray and I have become buddies, he knows he’s got another puppy-sitter. Although, on our last few hotel stays, Murray has been my roommate—the first time, it was just easier with me rooming by myself and Steve being with two other guys, the second was just for fun, and the third was this past weekend in Quebec City—Gerry had his new guide dog, Brody, too, and though well-behaved, the two dogs get kind of silly…

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Murray crashed out on my hotel bed this past weekend. It took him a bit to decide hie did not, in fact, want the pillow.

By the way, Murray knows me as Small Fry, not Kerri (useful trick: Steve can ask Murray “Where’s Small Fry?” and he’ll come find me)… and he was perfectly happy to overtake Small Fry’s bed this weekend. (That’s what I get for, after learning Steve did not mind puppy going on the bed, opting to share my bed with a 75-pound Black Lab…)

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This, in Toronto, is when he actually chose a good spot and not the middle of the bed. Beggin bacon bribery may have occurred this past weekend when he decided he wanted the whole bed…

I mean, other than that, I don’t mind—he’s a pretty good excuse to spend 5 more minutes laying in bed in the morning, as when I give him any indication I’m awake and moving, Murray seems perfectly content to engage in a brief yoga pose with his front paws to my right and back paws to my left, and then end by resting on top of me…

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Murray sometimes decides that Small Fry is comfier than the bed. This often leads to me texting Steve to inform him that sorry, puppy will not let me get out of bed.

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All in a day’s work, right? If only he actually motivated me to do yoga with him…

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You think you’re going somewhere? You’re silly, Small Fry.  My paw will keep you here.

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That’s my story about my buddy Guide Dog Murray. (Your friends with service dogs, and service dog friends may vary.)

Want to read more about Murray? You can follow him on Twitter, @GuideDogMurray. And, as a thanks for reading all the way to the bottom… Here’s Burger Face (for a period of time around Halloween, Murray responded to “Burger Face”. Silly.)

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Okay yeah so remember how I had all those grand plans fifteen days ago? [Sixteen days ago if you’re really counting, because obviously I start writing all these blog posts at 11:45 pm on the day I meant to write them. Yup.]

Yeah, nope, not happening already. I’m realistic. (I wasn’t 16 days ago but whatever. Details.)

Nanowrimo? It started off strong. Like usual. Then I lost interest. Even though I liked my story. I think I lost interest anyways, maybe I just got distracted writing all the other things.

I changed my goal even earlier in the week at some point (I forgot to write that down, but maybe Sunday or something). And then I kind of plateaued…

nanowrimo

It looks like I’m way ahead of the curve for awhile, but that’s only cause I shifted my goal down. I was trying to do 2000 words a day instead of 1666 or whatever the regular goal is, to compensate for the 5 days I’ll be away this month. But yeah, nope…

I was pretty pleased when I hit the 10% marker on time, before I changed the goal number. That’s better than I’ve done previously, honestly.

So, lesson learned: the research is true—don’t try to do too many new things at once.

Especially when a lot of your work is writing already, maybe. 🙂

I try to track a lot of stuff, but I like that stuff to be as effortless as possible (I’m human, right?). The more stuff I track, the less likely I am to track a thing after a few days or a week, which means I really can’t do anything with that data. There are not a lot of things that will track themselves, however, thinking about this the other day, I became curious to do a bit of an inventory to see what kinds of things I am tracking basically automagically. (Magic, yes.)

Sleep.
For over 2 years (actually, well over 2 years, but I think some of my data got trapped in an old iPod or something before The Cloud was such a big thing), I’ve tapped the screen on my iPhone a few times to track my sleep—I use SleepCycle, and this same app acts as my alarm clock (and lets me use my own music—I actually initially bought it years ago because of that), so I have some motivation to set it. This is, aside from wearing my Fitbit, probably the most automated self-tracking actiivty that I do. So it’s not quite automagic… but it just about could be. (The Charge HR does have automatic sleep tracking though, as well, and I did use the sleep feature regularly on the One and Ultra).

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Graphs from SleepCycle. Above, time I went to bed over the last two-plus years. Below, the odd waves of different activity levels on my sleep quality…

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Activity.
I’ve been wearing a Fitbit since January 2012—first the Ultra, then the One, and now the Charge HR. This means, aside from the times that I’ve lost it or forgotten to wear it, I’ve been counting steps, calories burned, activity level, distance covered. Since May, I’ve got a near-continuous record of my heart rate—which is kind of ridiculous and I’m looking forward to someone getting that export heart rate thing figured out. And, since the invention of MobileTrack from Fitbit, even if my device dies on my wrist, I still accumulate a bit of data—though not as accurate as the thing attached to my body.
I also have a couple apps in my phone that serve this purpose. I’m not really sure why I haven’t deleted them yet, however.

Here’s also a little app called fit|line. It gives you all kinds of stats extracted from your Fitbit. It also says things like “You spend an average of 14 hours a day sedentary.” (Don’t worry. My Pebble Time is trying to put an end to that nonsense. Actually, I thought it would be like “You spend an average of 23 hours a day sedentary” so…)


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All time Fitbit stats from Fit|Line.
http://i0.wp.com/farm2.staticflickr.com/1673/25832612924_0b66f6916b.jpg?resize=281%2C500&ssl=1Slightly different view…

Here you’ll see where I lost my Fitbit, or forgot to wear it, or it died or whatever.
You can also fairly easily pick out the spot in 2013 when I was super sick and when I was no longer in school and no longer working outside of the house.

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Things I Set Up on IFTTT at Some Point And Forgot About.
Okay, let’s take a look.

  • If it rains, this gets sent to a spreadsheet in Google Drive. I was at some point going to trend this with peak flows and asthma symptoms but, ha, those don’t get logged automagically.
  • If humidity rises above 75% this gets added to a spreadsheet.
  • If I enter or exit a tennis club, these times are to be logged (a backup for logging my summer work hours).
  • This one doesn’t quite count because I have to manually check-in on Foursquare… SWARM. I have to check in on Swarm. (Damn these name changes, really.) but that does get sent to my Google Calendar. So if I forget when I went somewhere and I happened to check in on F—Swarm, then I can find out.
Computer Time.
I’ve been using RescueTime for quite awhile. So now I have all this data about how much time I spend doing what, and I really don’t do anything with that.
 
Similarly, I once installed Checky on my iPhone to see how many times I looked at my phone in a day, but it has to run in the background obviously, which then gets swiped closed.
Because once the guy at the Apple Store had to close all my apps and he told me he’d never seen that many apps open on a phone. And he works at the Apple Store. That’s pretty bad.
 
There are probably all kinds of other things, but that’s my rundown for 11:40 pm. I’ll add more here when I discover them. 

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1:12 am | kitchen. Felt like making something around 11:45. Still making something.

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1:19 am | kitchen. And this is where I stop for the night. Pleasantly surprised with how the hair is coming. (I’m responding to the “draw a song” art journal prompt I saw online, using Feels Like Forever by Lacey Sturm.)

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2:00 am | bedroom. Tweet – “1:58 am seems like a good time to buy the @Smiling_Mind book right? Yup. Now to use the app and go to sleep.”
I did not end up using the app before I went to sleep, but I did almost also buy the November Project book… I restrained myself.

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10:17 am | Perkins. Sam and I went to Perkins to plan practice, because my Starbucks card reload failed during the upgrade to #Crybucks Rewards. Starbucks is refunding it, but why would I go to Starbucks with it not resolved? So, Perkins. And these delightful crepe things filled with strawberries and cream cheese.

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12:23 pm | Kitchen. I should really just start saying office instead of kitchen. I started the process of checking off many things from my to-do list with “file taxes”. As you may recall, they’ve been done since March 12… Submitted.

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3:39 pm | Kitchen. After filing my taxes and scheduling my tooth extraction (being a grown up is AWESOME. Like I wrote the other day, I’ve got a cavity in a wisdom tooth so it gets to get pulled out. Which is better than getting it filled, really.) I got a 20 minute dance workout on. Except I did it wrong and ended with a peak heart rate… Poor music choices (actually due to the song linked above)…
Anyways, yeah, I then did another grown up activity and did some work, which involved writing a blog post about why warming up and cooling down is important, and how despite having a degree in kinesiology I’m not smart sometimes.

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6:54 pm | Special O. Sometimes, we play games like Capture the Chicken that the parents are more intense about it than the kids (it does get the athletes stoked though..!). Yes, this guy is also my sport medicine doctor. 😉

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 9:31 pm | kitchen. 4 things checked off the month’s to-do list today.

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9:49 pm | kitchen. This is my buddy Guide Dog Murray, aka Steve’s guide dog. You should vote for him in the Guide Dogs for the Blind photo contest. He’s raised $25 so far, because he’s cute (and because humans are nice).

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11:00 pm | kitchen. I had a bath, and then put on clean socks… except I have no idea why there is red on this clean sock or what it is… Obviously I was like whatever and did not like, put other socks on or anything. Maybe it’s from that string anklet I’ve got on, but I’ve had that on for, like, months.

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11:34 pm | kitchen. Classic. Cookies and milk. (There was another cookie but you don’t expect me to, like, save them both to take a picture of, right?)

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12:38 am | kitchen. Technically no longer the 12th. But still within 24 hours and back to creating stuff. Because it’s like, therapeutic or something.