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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ADHD doesn’t define me, but it does help me understand who I am.

from What ADHD Feels Like to Me.

I’m stoked to finally share my first post on Understood’s “The Inside Track” blog! What ADHD Feels Like to Me shares a glimpse into my life with undiagnosed learning and attention issues, and what finally identifying my ADHD and learning issues means to me.

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The experience I’ve had working with the Understood team has been a brand new one to me. For the first time, I’ve worked with an editor—and, while he changed every ‘university’ to ‘college’ in this post, ‘cause America, he is beyond fun and the process has been awesome. (Hi, Andrew!).

Understood gets me.
I found the weekly #LDchat on Twitter run by Understood not long after my diagnosis. From that point forward, until I entered a contract agreement with Understood in September (and, let’s face it, even since then. Also, disclosures here), I would continually and politely remind the Understood team about the existence of adults with learning and attention issues.
Unlike so many groups, Understood listened. We threw some direct messages and e-mails around, and on September 1st, I signed my first contract with Understood (renewed January 1, 2016). While Andrew and I work together to rework and polish a piece to go live, honesty is as important to Understood as it is to me: everything I write on Understood reflects my experiences, feelings and opinions—Andrew made it clear that nothing would go up that I wasn’t 100% on. And, he’s been equally 100% solid on that.

What ADHD Feels Like to Me has been awhile in the making, but the process to get here has been awesome. I’m thankful for Understood: both for this opportunity to share my story with a bigger audience, and for what they offer parents of kids with learning and attention issues.


Disclosure: I receive compensation to blog for Understood.org (note: I would have done it for free but they offered me money). I am under no obligation to share these posts on Kerri on the Prairies or via social media. (But, you know, I like them, so why wouldn’t I?)

Back in February, I summarized the 2015 soundtrack so far. In reality, I didn’t add another new song until May—probably because other than travel, March was much a void, and in April I found more work and felt more of a semblance of normalcy—even just saying you have proper work plays into that—and as I’ll get into later, the stories for me happen in transition. I headed to Toronto at the end of April for goalball nationals, my first competitive coaching gig, and then returned in May for Clearing the Air. Then, it was off to Denver

My Disease – A Skylit Drive.

awaken to the eyes of glazed humor
the haze in my somber eyes it burns so cold,
the things you wish you could know

What I thought on those return flights from Toronto and Denver was this: Chronic disease sucks—the community that can arise from it, though, makes it better. If I didn’t have asthma, didn’t candidly share that experience, I’d be a much different person today—for better or worse. And, there’s humour in it that only “sick people” get, and a world that only we understand.

as he enters into the world,
as a ghost
the terror inflicted scrapes your bones
let him hold you close.

[Look… where… over there… fear me]
oh i see what you mean, step too close
see what i see—construct desire
the fine line between disease and what i need

it’s exactly what it seems
the horror i love, the evil that beats inside me:
it’s called my disease.

All of the above: it’s a blessing and a curse. I may have friends and adventures gained from having messed up lungs and other sorts of shenanigans going on in my body, but I still face the reality that everybody with chronic disease does every day. I don’t know what that day will bring, I don’t know what the next hour will bring. Even when my health is stable, there’s still the lurking thought of when will the stability end? It’s not encompassing, but it’s still there. The community of people, the friends I’ve made, makes that tolerable—but even in the good, the amazing, there’s still a kind of evil inside my body that I have to make a commitment everyday to coexist with so that I can continue to own it. A choice so that “evil” does not crawl into my mind and make me more cynical than I already may be somedays, and more importantly, keeps me seeing my circumstance for what it is, rather than what it could be tomorrow. I somehow got a reputation for positivity, and damn it, I’ll keep trying. While everything I chronicle here is the truth, like I said in 2013, there are still “stories I will never tell”, or I will never tell in as much detail as maybe they deserve–there are some stories I’d rather forget—even though I can’t.

The possibility to do good, why the travel opportunities existed to an extent, counterbalances some of that. But it doesn’t make the other stuff suck any less. 
 

Progress – MUTEMATH.

Progress was added to the soundtrack in about July, but really encapsulated April through August well. Work stuff started happening: I got a job with Tennis Manitoba (thanks for the recommendation, Sam!), as well as a more formal respite care provider position

pulling your confidence through
some courage is well overdue
i believe solely in all your promise
why waste a second in doubt
you could be helping out
keeping your head in the clear

I finally felt unstuck for a bit—looking for work is kind of depressing until stuff falls into place. Which can take forever.

[…] every moment of time’s just an answer to find
what you’re here for, what you breathe for
what you wake for, what you bleed for.

Certain things stick with you, no matter what, so every time I hear this song, I think of the above lyric, specifically “[…] just an answer to find […] what you bleed for”, and gently (usually) flash back to the whole situation of most of 2013, and, while maybe I haven’t figured out that whole effing scene, at least I can see how far I’ve come.

everyone’s counting on you
say for yourself what to do
life is a card that you lay down sometimes
to search for the best way of all
is finding the best way to fall
keeping your head in the clear

Sometimes I feel like I don’t know what direction I’m going. I wrote before that I was okay with this—now, I feel like I’m finding the best way to float, not necessarily to fall. Falling means taking risk, at least, means doing something—floating just seems passive. And I’ll admit it: some of the progress has been passive.

every moment of time’s just an answer to find
what you’re here for, what you breathe for
what you wake for, what you bleed for.
what you hope for, what you live for,
what you’re here for, what you breathe for
what you live for,
what you’re here for, what you bleed for
what you live for…

Every minute I’m given is another minute to figure it out; another moment to make a choice to be mindful of even the most passive of things… 

I know I have ADHD. I’ve worked at embracing that, at changing the way I perceive things about myself because of ADHD, at being more patient with myself because of it. I write about it enough here, and share about it enough elsewhere (like Twitter and Facebook), that I’m cool with people knowing that I have ADHD. But, back in 2013 when I had my psychoeducational assessment done, the tests came back inconclusive for ADHD. They gave me specific points to work off of at school: try certain study strategies, receive accommodations, and consider ADHD medication to see if they alleviated my symptoms. I did all of the above—and they all helped. So, I became more certain that I had ADHD. After several months on meds, I became positive. But, I hadn’t seen it on paper. Paper really changes nothing, I know ADHD is real, I know ADHD in me is real, but paper told me my tests were inconclusive. And I think I needed paper to tell me, inside, even after two years on meds, that inconclusive was no longer the case. So I can finally stop those doubts.

Once a year, I see my psychiatrist. Yesterday was that day. I got a new prescription for Concerta, and asked her to fill out a form enabling me to access support services for students with disabilities, as I plan to return to school in the Fall(-ish) and study web development. Because that’s a good combo with a degree in gym, yeah? I hand my doctor the form, and she fills it out as I stare at her doggy in the corner (her name is Haley and she is cute. I was very excited that my doctor had her in the office today!). I quietly take my phone off the table beside the leather chair I’m sitting in and take this picture. (Haley came to visit me in the waiting room, too.)

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I slide my phone back down, into my lap. Dr. G turns to ask me, “How severe would you say your symptoms are?”
“I thought that was a weird question–I really have no idea how to answer that.”
“Let’s see what psychology said.”
She flips through my chart, reads some pieces of my assessment to answer the question, and continues on with the form. We discuss my previous accommodations, she notes them down and asks me to review the form. Looks good (I realized last night that we forgot to note down the alternate format textbook accommodation, but that can be dealt with).

As I reviewed the form, though, I had to do a double-take.

Diagnosis: Attention Deficit Hyperactivity Disorder. DSM-V Diagnosis and classification number: 314.00. Retinopathy. Symptoms: inattentiveness, distractibility, some impulsivity, [arrow pointing down] vision. Severity checkboxes. Mild, moderate, and severe with an X beside. X beside permanent condition.

Because, her classification of my ADHD (314.00 on the DSM-V, or “Primarily Inattentive”) as “severe” is a lot different from “inconclusive” that I previously saw in writing.

i would but just can’t seem / to ignore what i can’t see.

—cause, let it happen.

As always, this doesn’t define me, but helps explain me. Like many ADHD-ers, I just felt different for much of my life: it explains the frustration, the self-doubt, the guilt that was associated with not being all people thought I should be, the huge shift I’ve felt in my world on meds, the issues I had in school, the issues I had/have at times interacting with people, the sensory overload, all the freaking feelings that sometimes just overwhelm me. ADHD helps explain that. Those things are all a part of me, and so is ADHD.

Now I know that yes, I fit solidly into this obscurely shaped non-box that is ADHD. I think, maybe, that just knowing that will help me move forward a bit more now. Accept my quirks, accept how they fit into this journey, and to roll with it, ‘cause I’ve seen it not only in me for myself, but on paper for myself.

It’s complicated to coexist peacefully with something that is so much a part of me, but simultaneously has dramatically impacted my life in perhaps not the most positive ways prior to my diagnosis. I can’t do anything about that, though, so I’ll continue to own this piece of circumstance—even if, for today, I can’t grasp the “severe” bit. Though it doesn’t really matter anyways—it’s all about how I choose to see what I’ll do with ADHD today.

i used to blame the circumstance: now i see it’s in my hands.

—effect, let it happen. 

This is what ADHD looks like.
Me.

But, I am far more than ADHD.
And I’ll embrace the good that has come with those four letters, too.

Two weeks ago, I went to Denver.
(By the time I’m getting this published, it’s been two weeks.) The time was packed, let me tell you. (I told my friend Sam everything I did when I was there and she was like “How long were you gone for?” and I was like “Left Monday morning, came back Tuesday night.” and she was like “…I thought you were gone for like, a few days with everything you did.” Nah, just didn’t sleep. Actually I did. A bit. More on that below.)

So, I’m gonna take you back to the GSK Asthma Summit. (And stuff. A lot of stuff.) [Previous post: my thoughts on GSK {/pharma} + patients].

Monday.
I woke up and saw this on my deck.

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Then I saw more snow at the airport.

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The snow probably came from Colorado.

Just putting that out there.

IMG_0448.JPGPeople tried to explain to me that I was not actually in the USA and Canada at the same time. I fail to understand how this works, because while the airport may think I am in the USA after I pass this door, I could jump back out the window and be in Canada. Because, there’s snow out there.

 

 

IMG_0450.JPGThen I got on a plane

 

 

 

 

 

 

 

On another point, my CLEARLY OVERSIZED BAG fit in the carry on sizer. Easily.

 

 

 

Then I got on a plane.

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and they sprayed my plane with green goo to de-ice. (Yes. Because we have to de-ice in May up in these parts. Thanks, Colorado.)

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 This dude is sleeping with his stuff in a very precarious position. The flight attendant seemed confused.

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And then I landed in this field that looked like a farm, and it turned out I was in Denver, so I met Dia by the giant statue of a potted plant (I expected it to be more giant, actually. It wasn’t worth photographing, I guess.) Dia is my Canadian asthma advocacy partner-in-crime, and the current Chair of the National Asthma Patient Alliance Executive. (And also she and I have seen each other every second Monday for the past six weeks and next Monday is going to break our streak.)

Dia and I took a cab downtown to the Hyatt Regency at Colorado Convention Centre where the American Thoracic Society conference was taking place (note: we didn’t get to go in, except once Dia tried to wander past the passes-only area. She was unsuccessful.)

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Dia and I met Dr. Dilini Vethanayagam, a respirologist from University of Alberta, Edmonton, who has special interest in severe asthma (and working with the Canadian Severe Asthma Network [CSAN]) almost as soon as we made it downtown. This is the thirty fourth floor lounge at the Hyatt, where Dilini took us to hang out—it’s always fantastic to finally meet someone in person after—at this point—a half dozen phone calls (or more?) and a few years worth of e-mails. Dia and I learned more about the state of the research study I’m working on with U of A, and where CSAN is at.

After meeting with Dilini, Dia and I headed over to the ATS Conference, or as far into it as we could get, anyways. Dia was in heaven as she picked up 20 pounds of respiratory journals to take home with her, and we visited the Canadian Lung Association table. You know, after Dia tried to sneak into the badge area…

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We also took a selfie at a selfie station to win a prize pack. (I think we didn’t win. I’m also unsure why I look more excited than Dia, because Dia is actually probably way more excited than me at this point because she has an armful of medical journals and she likes smart things…)IMG_0506.JPG

Wearing my Badassmatic shirt. Except I lost Dia’s challenge and didn’t get any pictures with asthma doctors with it on…

And then we got popcorn before meeting Dr. Sally Wenzel from University of Pittsburgh, and the Severe Asthma Research Program. (You might remember Sally from a previous asthma adventure to the World Congress of Asthma in Quebec City in 2012. We failed to get a picture with her, but it was great to be able chat with her before a presentation for 15 minutes!)

Now, enter my American asthma advocacy partner-in-crime, Steve (it took his cab an eon to get from the airport to the hotel, but he made it!)

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AND, his Boston Marathon racewalking partner-in-crime, Lis, whom I was also meeting for the first time… not that you’d be able to tell…

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…The first picture…

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Now, I’ve known Lis online for a good five years now, and in person she is every bit as energetic (to put it mildly) and passionate as I would have imagined (look, these words are failing to explain her adequately, so let’s just say she is this wild force of awesome, and you’ll have to meet her yourself!). We also met up with Sheila, another asthmatic in Denver (Lis was the odd one out—though she was initially misdiagnosed with asthma, and is since doing a LOT better since confirming she has vocal cord dysfunction! :].) Lis lead the way to Mellow Mushroom Pizza because Dia and I were kind of starving at this point and Steve liked the name (and so began my first of two pizzas in about 4 hours..!)

After food, Sheila, Steve, Dia and I grabbed the free bus back to the hotel, Dia and I got our stuff from storage at the Hyatt, and we parted ways with Sheila and headed to the hotel via Uber.

So, know what rocks about travelling with people with asthma?

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This—if you’re unfamiliar, the missing ingredient would be the nebulizer tubing, AKA the piece that connects the nebulizer to the compressor making it useful…

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Yeah, the three of us all travel with the same compressors/tubing… I headed across the hall to Dia’s room instead of upstairs to Steve’s. Really, I did not feel super terrible except elevation probably + fragrant people exposure + hotel under construction = kind of a perfect storm. I did another treatment the next morning, but upon landing back at home I was breathing easy again. Denver = weird. Which I was told to anticipate.

Then we went to dinner at Piatti and met the other two bloggers attending, Juan and Karen from GSK, and Samantha and Minyan from Golin, the PR company working with GSK. I rolled onto my second pizza of the day (margherita, and not just cheese ;)). And then Steve, sneaky friend that he is, made this happen…

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This was Monday. My birthday wasn’t until Thursday (oh, hey, I’m 24 now..!), so I was more than a little shocked/confused for a moment! So, Steve dropped the word because he wanted to buy a cake but then basically GSK stole his idea ;).

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How freaking beautiful is this cake?!

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Then we returned to the hotel, where I had to go get new room keys (because, no, I can’t just forget my room keys when I go to the pool with Goalball Steve [as opposed to California Steve] and Gerry in Toronto, I forget them in Denver, too. Fortunately I had ID this time. Steve, Dia and I went and hung out in my room after I got new keys, and when Steve and I walked in, I found this… (Well, it was in the bag at the time!)

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Yes, Ms. Lizzy (Lis) and Doc Boots strike again! Pineapple Fanta and Jarritos! (Complete with bubble wrap so I could get it back home in my then-checked backpack!) Lis knew it was my mission to get my hands on some Pineapple Fanta while in Denver, and… there it was, complete with puppy birthday card!  Steve got to work using some surface or another in the bathroom as a bottle opener, and Dia went to get ice (I am the lazy one who only tore the paper cups out of their plastic wrapping and poured the bottle of soda into cups ;).) Dia and Steve got into some scientific discussion about mast cells over Pineapple Fanta while I stared at the curtains (aka not the mountains. The hotel claimed mountain view but they were VERY FAR AWAY) cluelessly.

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Eventually we all went to bed (I did my bedtime reading from GSK with a side of GSK Ventolin): I sort of slept. Steve did not sleep. Dia actually slept. I sent Steve my sleep graph in an early morning text message.

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Tuesday.

Sometime around six I went and hung out in Steve’s room (note: Steve and I are polar opposites in the regard to Hotel Room TV. He always has his TV on. I never do. When I was in California, he was the one who turned my TV on, and I turned it off when he left). Dia decided to test out the 24-hour-Starbucks-theory (as she told us) and headed over to Starbucks nearby, after coming up to Steve’s room to pick up my phone with which she bought me hot chocolate. (…Yes, look, this is how awesome my friends are, and how lazy I am early in the morning. But mostly how awesome Dia is).

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Is it tag-team nebbing if you part ways to do treatments? 😉 I Instagrammed this picture with the caption “I get by with a little help from my friends—and their nebulizer tubing.” I usually only do treatments when I am tight enough for it to be really bothering me, but like the night previous, I was kind of not wanting to cough through dinner with GSK, nor did I want to sound more asthmatic than my usual cough during the event. Also, look, the things I do as a patient always come with a stupid side of asthma, and that is annoying, but a reminder that yeah this disease sucks but I get to do cool things because of it sometimes, and more-so because of the fact that I try not to complain about it and just live my life and coexist with my asthma.
Plus I always feel way better after even if I don’t think I reallyyyy need a treatment that much.
Plus also Dia made me laugh while taking this picture as she arrived at my room mid-treatment and probably yelled “housekeeping”. Steve also came [post-treatment] and did not yell housekeeping and just knocked like people sort of usually do. Then we went downstairs into the construction zone to get in the Ubers to go to Columbine Elementary School (for those wondering, no, this is not near Columbine High School), for the GSK Building Bridges for Asthma Care event.

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Here’s Steve and I being sleepy in the Uber SUV.
We are good shoulder sleeping heights for each other.

 (Photo Credit to Erin Guthrie/GSK)
 
Welcome to Columbine Elementary School

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With that, here are some slightly-dated demographics of the students at Columbine Elementary School to provide a bigger picture.
CES demos

Being mindful that I do not have a proficient understanding of the American public school system or its subprograms, I deferred the interpretation of this to my friend Kat. She explained that “92% of the families [in the area] make less than 185% of the federal poverty line; [about] $40K for a family of four,” and thus qualify for subsidized or free school lunches. (Note that in Canada we have no such national programs.) She continued to say that “In general, [with] that high of a percentage, it would be fair to categorize the neighbourhood as poor-to-working-class [living paycheck] to paycheck.” The schools the Building Bridges Program was run in had been referred to as inner city schools, and Kat’s explanation of the socioeconomic status relevant stat above helped clarify that to me.

I want to quote what Steve wrote before going any further:

So, do the big drug companies have a vested interest in helping these types of programs succeed and seeing the absenteeism rates drop? Would this type of program increase their inhaler sales? I seriously doubt it. Even the big bad drug companies do good things once and in a while and I think this is a perfect example of that.

This. And, like I said in my previous post linked above, I think it’s time we give pharma a lot more credit.

The Building Bridges program aims, in short, to decrease school absenteeism in kids with asthma—and through this, their parents are able to more consistently attend work. If we’re talking families that may already struggle financially, this becomes even more important. We’ll now break to a video. Because this is what they are doing:

This.

high five

This means that this little girl was in school on Tuesday.
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Didn’t take much more than saying “I have asthma, too” to get a smile and a high-five from Countess!
This means her mom (Qyanisha, in the video) is able to work regularly. It means she could take time off to attend this event without worrying about her daughter. It means that less children and families are living similar stories—it means the core aspect of a child’s life is able to flip from asthma to school, just like every other kid.
While I said I had wished there was a kid on the panel (and I’m happy I got to meet Countess!), we heard from a bunch of amazing medical providers working with the Building Bridges program. I’ve Storified the event, so you can scroll through. I have to say though, that Donna Sparks, RN, was my favourite speaker of the day—
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—I’ve nicknamed her Cheerleader Nurse Donna in my head.
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(We are purple under the stage lights?)
Another huge connection I hadn’t made previously, that Donna made (can I say again that this woman is awesome? Super Nurse Donna fan club, people): because these kids can be in school, they can stay in school. Donna underscored that if kids can stay in school, they can finish school—they can decrease their risk of becoming involved in crime by finishing school. I hadn’t thought of a link between asthma/absenteeism/deviance before: I just threw “asthma and crime” into Google Scholar: 34,200 results. Whether this is because inner-city areas seem to have higher rates of both asthma and crime, or because of issues pertaining to health care access, or because of algorithms, or actually because kids with asthma may miss more school and become frustrated and then turn to crime for psychosocial/socioeconomic reasons (or other cyclic things like that), is not super clear, of course, but here are some snippets (they are a bit long, so if you are not into academic reading, just read the first one and skip the bullets, okay? Don’t leave me hanging!)
  • The first concludes: “Evidence suggests an association between violent crime and childhood asthma prevalence in Chicago.” (Gupta et al., 2010)
  • Another:
    Results: […] Among African-American patients, age and residential crime rates were positively and negatively assicated with ICS [inhaled corticosteroid] adherence, respectively. Area crime remained a predictor of adherence in African american patients, even after adjusting for multiple measures of SES [socioeconomic status].
    Conclusions: This study suggests that an environmental stressor, area crime, provides additional predictive insight into ICS-adherent behaviour beyond typical SES factors.
     (Williams et al., 2007). (Note: Remember that ICS use is positively correlated with asthma control, and that non-adherence can negatively affect asthma outcomes. Also that these drugs are quite expensive, especially in places like the US).
  • And, yet another (also nothing the use of “may” doesn’t mean that this is untrue, it just means that, as an instructor once told me, that especially in health, research never really ‘proves’ anything, only suggests potentials—as per point #1 up there, and the most recent of the articles cited):

Increasingly, studies have begun to explore the effect of living in a violent environment, with a chronic pervasive atmosphere of fear and the perceived or real threat of violence, on health outcomes in population-based studies. Violence exposure may contribute to environmental demands that tax both the individual and the communities in which they live to impact the inner-city asthma burden. At the individual level, intervention strategies aimed to reduce violence exposure, to reduce stress, or to counsel victims or witnesses to violence may be complementary to more traditional asthma treatment in these populations. Change in policies that address the social, economic, and political factors that contribute to crime and violence in urban America may have broader impact. (Wright and Steinbach, 2001).

So, yes: this understanding/hypothesizing has gone back to at least 2001—and probably way before. Many programs in the US are working to this phenomenon, and I am happy that Building Bridges is among them—and, I hope it is able to expand to other schools. Because if one thing—asthma control, both in the sense of actual control of the disease and reclaiming the feelings of these kids that they can do anything… can lead to a ripple effect of good things.

The coolest thing about this event, I think, was that it was ensured that we got there early enough to meet the speakers, and that they so wanted to speak to the bloggers attending. That doesn’t happen at every event. The event organizers also had a fantastically sized gap between the end of the presentations and lunch that people started to mingle, and then carried on their discussions over lunch—an amazing transition, even if it was not planned! As soon as the event ended, I also got flagged down to meet Qyanisha and have a direct conversation with her about how the program has impacted her and her daughter—prior to connecting with five or so others just on my way up to my bag at the back of the room, I returned to this scene:

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Dia doing what she does best, asking great questions to Sheila—an asthma counsellor with Colorado Children’s Hospital—regarding parental buy-in to the Building Bridges program and how they deal with resistance to engagement and alternative therapy use—which is by educating without being forceful.

We flowed through chatting with a bunch of people in attendance, and then into the line for lunch and up to the tables on stage—I won’t lie, another huge highlight was spending lunch with the school nurses and asking their questions about blogging, while passing my phone over to show them my blog! How cool is that? I had to heckle Steve to make his way to the blogger debrief table because people were so interested in his awesomeness that they wouldn’t really let him escape ;).

Andrea (left-back), Katrina (right-back)
Dia, myself (duh :]), Stephen

Below, same, with Karen and Juan from GSK. 

Photo credit to GSK/Erin Guthrie on Photobucket.

The blogger roundtable was a great way to wrap up the morning with Juan and Karen. We basically had an open Q&A with them about what they can do better for patients (drug ads. make better drug ads, guys!), and other ways they can make the patient connection better. Can we go back to my post from prior to the event for a second? They. Are. Trying. Effort takes time. I realize that working in communications, Juan and Karen are just doing their jobs, but, people don’t get jobs that require high amounts of talking to other people if they don’t want to change things—that’s just kind of the way extroverts are. I’m really looking forward to seeing what comes next for the asthma community through pharma working towards bridging the gaps […no Building Bridges pun intended!] with patients and—I hope—implementing our suggestions, showing us progress, and not just letting the roundtable be a one-day, in-person thing.

Because whether we’re selfie-ing in an Uber…

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(Karen, Juan, myself, and Dia’s eye.)
Or trying to get our own Uber for the first time…

…Or laughing at this sign for whatever reason…

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…Navigating this security line with our plethora of medications and neb compressors…

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We have a lot of things that, together, we want to make better

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(or at least suck less?)

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“Not a doubt in my mind anymore, there’s a storm up ahead.
Hello hurricane [tornado?], you’re not enough. Hello hurricane, you can’t silence my love
I’ve got doors and windows boarded up, all your dead end fury’s not enough
you can’t silence my love. […] I’m a fighter, fighting for control—I’m a fighter, fighting my soul,
Every thing inside of me surrenders: you can’t silence my love.”
Hello Hurricane, Switchfoot.

(Asthma is kind of the storm—the kickass friends who dare to do something about it are the shelter.) 

Yet, we prove every damn time we’re together, that we’re about far more than asthma

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(Before, one by one, we departed—Steve, then Dia, then myself—
Denver International Airport) 

but most importantly: together or apart;
advocating purposefully or just living our lives that happen to include asthma…

We are still here. We sill want to share.

Disclosure: GlaxoSmithKline United States paid for/is reimbursing all costs associated with attending the GSK Asthma Summit, including roundtrip airfare to/from Denver, CO, hotel, ground transportation and meals [and phone expenses?! And for my checked bag after I got gifted Pineapple Fanta?!]. I was not required to blog or share on social media about the GSK Asthma Summit, nor do they pay me to do so (nor do they affect the content I produce in this post, or in the futureor the past, I guess.)