I spent the [double long] weekend in Minneapolis. I tried to write a Facebook status update on Sunday about it. It kept turning into a blog post it was so long. Now it’s Thursday and I’m trying to recreate what I had (except that’s impossible, and also I saved it somewhere and think my phone ate it.
Anyways. After a super chill day at camp on Friday (my wish was granted: I got such a chill camper on Friday. He was awesome. He and I hung out in the bean bag chair filled tent for a bit and both discovered we were going to Minneapolis for the weekend, so we talked about what we were going to do there, and he told me these crazy stories from dreams he’s had, and then our morning activity never showed up so he basically played soccer for two hours. Then after lunch (pizza!) some coaches needed to stay back to clean up while the kids and coaches went to the pool/splash pad… I agreed to stay back, and after 45 minutes camp was disassembled, loaded into a couple vehicles, and the kids memory books were assembled. That left… an hour and a half to hang out with the other coaches and camp director and eat freezies. For real.), I left camp early to hit the road to Monticello, MN with my aunt and grandma. The border people are pretty okay with the answer of because Dean is going to school/working in America for the summer, they get tired of us quick and let us keep driving :).
Minion Twinkies? Yes, please! [I also bought Banana Creme Pie ones. With Minions. Because obviously.]
The next day, we drove to Minneapolis. Eventually, Dean let us into the building (he had to pay with a check [not cheque] for our guest apartment!), and then we went for a drive to the park.
Because I like subjecting people to my ADHD sometimes, here’s a picture from back at the apartment. BAGEL WEDNESDAY! Which is not the same as FREE BAGEL FRIDAY from WheezyWaiter videos of old.
Back to “real time”.
We went to Breugger Bagels and then back to the park to stand on a boat for a couple hours. It was hot out but there were photogenic things so it was fun. (Are things photogenic or just people?)
And here are a bunch of out-of-order pictures from the riverboat tour.
I took about one decent picture indoors. Then we went outside so that’s the last one with glare.
Our boat had a crown. Minnesota Queen. (Also, yes, it was the Mississippi River, and yes, there at one point was a Mississippi Queen tour, or maybe there is. And no, they did not play Mississippi Queen by Mountain on there.
Dean was disappointed. Obviously.
But then we made faces inside a lock as our boat rose. I didn’t intend to look quite that ridiculous, and I probably intended to at least be looking at the camera.
This is an interesting tree.
Bridge graffiti interests me.
Here’s a landslide. Weird, eh?
We went to Punch Pizza for dinner later that day. I love that place. If you’re in Minneapolis, I highly encourage you to check it out. Also another thing I learned about the next day, is WHIRLYBALL. Yes, that sounds ridiculously fun, even without knowing that it is basically lacrosse in bumper cars. My friend Heather told me about it at lunch at Houlihan’s. Also, when Heather (and her service pup Becca, who gave me a hello shoulder nudge when I got in the car!) picked me up, Heather surprised me with E. L. Fudge cookies! (There was a brief period of time where they disappeared from Dean’s Target, and this worried him. Heather went on a mission, and sent me a picture one day. And sure enough… provided me with E. L. Fudge cookies of my very own! :D).
Heather, Scott and I have made it a tradition to get together if at all possible when I’m in the area (they are AWESOME and I highly appreciate this!). This time, we had to sandwich it in between Scott playing basketball in the morning, and Heather having art class in the afternoon. BUT, it totally worked… mostly! 🙂 Scott and Heather ended up tag-teaming a bit, because basketball was super awesome—so, unfortunately, they had minimal hang-out time with the three of us, but I got lots of hang out time with each of them :). Scott drove me back to the apartment where I hung out briefly and then we went to Cupcake on University. (Obviously I love that place, and think you should go there too, if you’re in the area.)
When we got back, my aunt continued preparing dinner at the apartment—risotto, garlic mashed potatoes, salad, and chicken wings for the meat eaters—a proper-ish home-cooked meal for Dean and his roommate Derek (…and us, of course). We also went and played frisbee on the lawn of the architecture building briefly. Derek is better than I, but we both aren’t great at catching. Also, it’s hard to catch when Derek repeatedly threw the frisbee six feet higher than me. ;))
The next morning, Dean stopped by at 6:30 AM to say goodbye before he went to work (concerning bridges, actually). My aunt took a trip to Breugger Bagels again (because they kept giving us surveys where you got three free bagels?!) for bagels and cream cheese, and then we packed up and hit the road…
…by way of Albertville outlet malls, a Target for lunch (if you’re a smarty like Gerry, no, there is not a dining area in Target!), a Dollar General in Barnesville, Fargo’s West Acres Mall…
and on to Grand Forks for Erbert and Gerbert for dinner (yes, I’m having pb&j and broccoli and cheese soup!)
…plus I still had a cupcake and a half to eat…
…and some shopping.
Oh, and the hotel pool at the Expressway in Grand Forks was awesome. Not only was it asthma-friently salt water, we think, it also had pretty coloured lights in it! And a basketball hoop in the pool!
And that’s about it, so we went home. (Or that’s about it because we went home. Whatever.)
I still want to play Whirlyball, obviously. It’s on my list for next time. 😉
Airports and airplanes are among my favourite things. Once those six-flights-in-six-weeks culminate, if someone wants to fly me away again, I’m down.
YWG -> YYZ -> YWG -> YYZ -> YWG -> DEN.
[…Denver yet to happen. Next Monday.]
First was Senior Goalball Nationals April 17-19th. We didn’t win any games, but, I heard from another coach that he hadn’t seen Manitoba score seven goals in a game for about seven years, so, I feel okay about that! Plus Steve, Gerry and I got free stuff at the new Yorkdale Shopping Centre Starbucks (they’re left of me in the picture, #1 and #9, respectively), met Dia for coffee, went to the CN Tower, Purdy’s chocolate, and the Lego Store!
(Thanks to Jamie for snapping this picture when she and Larry came out to check out the games!)
Then less than two weeks after I’d returned, I was back on a 5:15 flight out to Toronto last Sunday morning. The official purpose of the trip was to attend an all-day meeting of the National Asthma Patient Alliance Executive Committee on Monday, the Clearing the Air Conference Gala Monday evening, and the Asthma Society of Canada’s 2nd annual World Asthma Day conference on Tuesday—World Asthma Day.
Hello, Toronto! (Again!)
My flight arrived 25 minutes early—it was really only the beginning of Transit Nirvana: I checked my phone upon arriving at the Terminal 3 bus stop, and the bus would be there in 3 minutes. I got off the bus at Kipling Station and after a moment of confusion with an out-of-order track, I was on my way to Jane. From there, I’d planned to walk to Humbercrest United Church, but, because of Transit Nirvana, the appropriate bus was sitting outside, so, a transfer it was. Beautiful.
This picture was my “I’m almost there!!!” text to Jess (below!), who I connected with on Twitter a few years ago. Getting in to Toronto at 8:30 AM on a Sunday meant it only made sense to go to church (…for the first time in two years :]).
(Getting into Toronto at 8:30 also meant that I was awake at 3:06 AM, thus the evident tiredness here!
Selfie credit to Jessica!)
Listening to the choir warm up before the service! I may have also had Live’s “The Distance” going through my head here:
i’ve been to pretty buildings / all in search of You / i have lit all the candles, sat in all the pews
[…] oh, the distance makes me uncomfortable / guess it’s natural to feel this way / let’s hold out for something sweeter: spread these wings and fly.
I’d discovered while exploring where the church was that my grandma’s friend Alice lived nearby. After the service (interestingly, Jess spoke on John 15, which we’d explored one weekend at a youth leader’s retreat a few years ago—read: five years ago. How did THAT happen?), I met up with Alice at a coffee shop nearby for a couple of hours.
(Got this picture in the mail from Alice 05/15!)
I reconvened with Jess after her meetings finished to go for lunch and do a drive through High Park to see if the cherry blossoms were out yet. The park was busy, but I felt super lucky to see the cherry blossoms—a few days on either side and I may not have been able to!)
Jess dropped me off at a subway station, and while I almost got on the train going in the wrong direction (despite her telling me to go the opposite way!), I made another Transit Nirvana-esque transfer at Bloor-Yonge Station to college… and then proceeded to walk past the hotel and almost back to the station I’d transferred at. Hey, I figure I’d done pretty good up till that point—thanks Google Maps!
Shortly after arriving at the Courtyard Marriott downtown, I texted Stacey, a NAPA executive member from BC who had also arrived on Sunday. We connected in the lobby, went to the Second Cup in the hotel, and then went on a walk around downtown, including finding a Loblaw grocery store, and then returning to the Second Cup to buy dinner.
(We got lost a bit, but that just means more Fitbit steps!)
The sole purpose of my ice bucket was to house my berries—my chocolate milk couldn’t even stay in there so I just hoped it had enough preservatives in it ;). I was mostly unimpressed that Gerry wasn’t there to get ice for me ;).
I woke up at 7:29 Eastern (6:29 Central—clearly I was tired as I went to bed at what my body would have interpreted as 10:06 PM, and I crashed into sleep rapidly according to SleepCycle), and got ready for the day. Did I mention the weird layout of my room? Yeah.)
I went on a journey for a plain collared shirt in white or black several days before going to Toronto. I found one such shirt and the small was too big, so I had to resort to getting a Winnipeg Jets golf shirt. Represent! I got business casual down ;).
I got a text from Sue saying she had arrived at the hotel after an early flight from New Brunswick, and headed down to the Second Cup to meet her before my meeting with Erika and Vibhas. I am also that person who gave everyone the keys to my hotel room—Dia actually went up there to work, even! At one point, Erika and Dia had both of my keys and I had none, which was kind of amusing. Erika, Vibhas and I discussed the Asthma in Schools subcommittee meeting later that afternoon, and I thought it was awesome that we had some input from Sue as well, as she was taking part in the Strategic Planning discussion, so my hope was that she could use some of our previous struggles to help influence that discussion!
We started our National Asthma Patient Alliance Executive meeting at 11:30. Dia, as Chair, was keeping things rolling as you can see below.
From this point, I think the best way I can summarize the bulk of the asthma/National Asthma Patient Alliance/advocacy/World Asthma Day related content is through tweets—real talk in “real time”. I’ve embedded a selection [a hefty selection!] below, and then will return with added commentary (I’ve embedded some commentary through Storify, also!)
(Be sure to click through on “Read next page” to see the last few gala posts, and tweets from the Clearing the Air summit!)
I set up #ClearAir15 on Symplur to give us a sense of how things were going Twitter-wise (no, Noah, I did not just set that up to bug you about my insane amount of tweeting, although that was a nice side-bonus—ADHD lends itself well to live-tweeting mostly), and because I like graphs and things (so does Rob, I learned). I am not really sure whether I expected more or fewer people tweeting (I am, after all, MedX biased, which is the craziest tweeting conference evah).
Seems about right.
Sorry, Noah (tweeting as @AsthmaSociety). Final stats say Erika and I out-tweeted you :]. Putting the e in ePatients.
(Of course, the ASC account came out ahead in Top 10 by Impressions. Also, I am glad to see more people tweeting at both Glen Murray and the Asthma Society than me, because that only makes sense.)
My favourite session of the day was Dr. Sarah Henderson’s breakout session on extreme summers and respiratory health. What I found most interesting about this, outside of the graph included above that compared Ventolin dispensed to levels of specific particulate matter in the air (mind-blowing to see that they were able to very much trend peaks in Ventolin dispenses at British Columbia pharmacies [and thus, likely, use of rescue medicine] at the same time as particulate matter from forest fire smoke), and how extreme heat + allergens + forest fires [particulate matter] = higher incidence of respiratory issues—I will say the most interesting part to me was not all of the above, but that Dr. Henderson actually dragged illicit drug use into the frame, noting that not only is use of street drugs a potential cause of death, but the way cocaine use alters the body’s response to heat means that cocaine users are even more likely to die during extreme heat than they might be in the same circumstances but in cooler weather. (Oh, I also got to introduce Sarah AND MENTION PENGUINS. Dr. Henderson is a cool lady.)
My Twitter slowdown came when money and politics were being discussed. I was not only lost, but disappointed when instead of using the policy discussion for good, it came to a political showdown that did not just highlight the good, it began slamming the Tories—yes, I’m really left-wing myself, but a health conference is certainly not the place to alienate those who may not be.
And that is when Jess and I chose to take selfies instead of repeatedly slamming our heads into the table whilst trying not to breathe in too deeply around the woman who decided it was a good idea to drown herself in perfume before attending an asthma event? (Okay, maybe I was irritated by more than one force…). Anyways, moving back to the positives.
The final session of the day was a patient panel, including two NAPA executive members, Erika and Chantale. This discussion generated a lot of good questions, and I really just wished that the patient perspective was not included last. I think it was a good way to finish the conference, however, I think the patient perspective needed to be woven in throughout the day, not just at the end (by which point many attendees had left, as well). Once again, maybe a “MedicineX sets a precedent for me” thing, but, if we ever hope to see a world where patients are truly engaged in a conversation, and not just—whether legitimately or unintentionally seen as—an afterthought, this needs to happen: we may all be an n=1, but we are why change needs to happen.
Jess and I following the conference—photo credit to Rob.
Rob and I (Rob actually recruited me to the exec when he was working for the ASC.
We tried to recreate a picture from Quebec in 2012, when we were both the students taking all the pens from the conference room right before he started law school. And now I’ve also graduated and he is an almost-lawyer!)
Photo credit to Jess.
But, until then, until the change does happen and through that process, I’ll have many amazing friends to share the journey with. Before she pointed me in the direction of a train (look, I only stayed on going the wrong way for one stop!) Jess and I discussed the day over margherita pizzas (thanks, Jess!).
$3.50 iced tea from Pearson and airplane shirt? Check. (After wandering out of the secure area to not-find Sue because I was not allowed in concourse D? Yeah, check.)
…and, of course, looking back with there realization that if we did not recognize that we are the ones who will help guide change being created, if we didn’t have this stupid disease, we wouldn’t have been sitting at the same table in Toronto for a second time in three days digging through all the topics that we did :). The conversation, the people, and the steps towards change—however small—are what matter.
Disclosure: The Asthma Society of Canada, via its funding partners (pharma), covered the cost of airfare, one night of hotel, gala and conference admission, and some meals, for National Asthma Patient Alliance Executive Committee members to attend the NAPA meetings and Clearing the Air conference in Toronto. I was not asked to write this post, nor obligated to provide a positive review (as you can tell, probably).
All tweets cited above as my own are completely that, including mentions of my engagement with both NAPA as present Vice Chair, and the Canadian Severe Asthma Network, as Patient Lead, are based on my own desires to identify [within] these roles/groups. I receive no added benefit in doing so, I just think they’re good people[/things].
1) Taken some pictures and forgotten to blog them. [I did a 12 of 12, even.]
Assiniboine Park Zoo
2) Got another job that I still can’t start because for-good-reasons-red-tape.
4) Read books. I’m trying to read 75 books this year (Overdrive + library access = awesome). Currently reading The Psychopath Whisperer by Kent A. Kiehl. (And The Art of Non Conformity and I’m Only Being Honest still. And a bunch of other things. I thought I liked paper books better than eBooks but I seem to get through eBooks more quickly, whereas Jeremy Kyle above just gets to keep hanging out.
5) Went to Minneapolis.
Saw my cousin Dean.
Saw his team’s concrete canoe. Ate cookies and pretzels in outlet malls.
Spent a couple nights on an air mattress in a hotel room, ‘cause that’s how we roll.
Finally went to the cupcake place on University (I think it’s just called Cupcake.)
Ate this cupcake at 9 AM:
Slept in the car. Ate an unacceptable amount of junk food.
And shared this crazy massive bowl of mac & cheese with my friend Scott when we went for dinner with Heather. (Scott called it a trough. Also it dominated us.)
6) Watched The Jeremy Kyle Show. Damn ridiculous British TV that is actually amusing. More amusing than Maury for sure.
In August/September, I ventured from Winnipeg to Minneapolis to San Francisco, to the East Bay, to Santa Cruz and Davis, California . . . to simply start the journey that lead me to the campus of Stanford University. I already wrote about the people—so, here are more of the good things. . . and a chance to meet the people and hear their voices and stories, and how technology and social media, engaged patients and engaged providers are changing the realities of medicine, and more importantly, improving patient care outcomes.
Disclosure: Stanford University, Stanford Medicine and Stanford Anesthesia, as well as their partners (including the Kadry Foundation, Eli Lilly, and Boeringher Ingelheim) covered part of my costs to attend Stanford Medicine-X, including part of my airfare, one night of hotel, and a significant portion of my conference fees. As a recipient of an ePatient Scholarship in the Engagement/Producer track, I was required to produce a blog post, video, etc. to share the stories of Medicine X—but, let’s face it, I would have done so anyways :].
The Tour de Good Things was a way i could summate the crazy journey I took to culminate August and begin September—both on an extremely high note. It has been nearly impossible to come down from the high that begun prior to Medicine X 2014 at Stanford University [disclosure], especially since the journey encompassed 7,227 kilometres (or about that). The last Thursday in August, I got into a car with a 60L hiking backpack of necessities and a drawstring backpack of medications, my only “prepared” travel document being my passport, and left home for 12 days. I arrived back into Winnipeg by plane last Monday after a red eye flight via Minneapolis—my initial destination.
There are many posts in here waiting to be written, and a video to come. But as many, many others have summated, the power, the magic, the amazing of Medicine X is in the people: This is a theme that would cover the entirety of the Tour de Good Things.
This kid (my cousin, Dean) headed down to University of Minnesota to start becoming an engineer of the probably civil variety, not the train variety [though, train engineers are probably also very civil]. So thanks to him I got a really long ride to the airport.
I also had grilled cheese and an awesome conversation on the parallels of asthma and T1 diabetes with these lovelies, Scott and Heather.
SFO. All over the East Bay. Santa Cruz. Davis.
My awesome aunt, Linda, and my grandma dropped me off at MSP after a 4.5 day drive to the airport […okay, the airport truly is only 8 hours from home. Not that that’s close.] and a four hour flight, I hit ground at SFO and was swept up into my “Cali-bestie” Steve’s truck, where (after picking up pizza), I FINALLY got to meet his long time partner and now husband, Doug (finally. On my third visit to the Bay Area—third time’s the charm, right? Doug is, of course, to a tee of how Steve describes him, and a total sweetheart just like Steve). We headed to Santa Cruz the next day, and San Jose where I finally got to meet his mom, Claire, his sister Sheree, and Sheree’s husband, Dan, who had us over for lunch on Monday.
The next day we headed over to Davis to get Steve’s new bass set up by a cool dude named Harrison.
Steve drove me out to SF on Wednesday [because he is the best] to ensure I made my connection with my friend Carly (whom I met at MedX in 2012!) at the Twitter building. Carly’s friend Samantha was [at the time] working for Twitter, and had invited Carly for lunch—and opened up the invitation to any of Carly’s friends who wanted to come, too, which was beyond awesome :). (Samantha on the left, Carly—our link!—in the middle :].) Thanks, ladies!
Carly and I made a brief stop in Japantown after lunch and our tour around Twitter with Samantha, and then headed for Palo Alto. Not long after arriving, we had a spontaneous MedX ePatient gathering by the pool—meeting, and reuniting, with a lot of kickass ePatients—friends.
Carly and I (left, of course), [fellow Canadian!] Annette, Liza, Meredith, Dee, Marie (from Ireland!) and Michael (from England!) at the Sheraton. (Thanks to the Sheraton team member who ran out to take this shot for us!)
The next day, the fun really got started when Dr. Larry Chu [the beyond awesome MedX Conference Director!] introduced us to the Selfie Stick [here’s a professional picture (source) of Leslie, Emily, Karen, Rachel [TEAM CANADA!], myself, and Nikki selfie-ing with a selfie-stick on pre-conference workshop day!]
Of course, Ryan had to give it a go once we hit MedX full-stride—he had to make himself short for me so that a) I could adequately put my arm around his shoulders, and b) because he is too tall and was blocking the world medicine :).
No selfie stick for Brett and I, though (…everybody is SO TALL). He yelled “Oh hey, it’s Kerri!” in the corner right by the selfie station, and then we hugged, and I was like “okay we need to selfie so we don’t forget!” :]
We don’t always selfie in front of the selfie wall—sometimes we selfie in front of the gold badge door. Not only was Devon, below, a hit among the crowd at MedX, I was super excited to find another lunger on the scene [I mean, asthmatics DO hide everywhere, but… they hide].
Devon spoke on a panel about “the non-smartphone patient”, and has COPD. And, though he seemed adamantly against it before I showed him everybody tweeting his quotes, I did get him signed up on Twitter!
My super sweet roomie, Karen, and behind us, her poster presentation on the metaphorical dance that is chronic illness. Karen is a sport psychologist from Mexico and is generally amazing, so we never had a shortage of fun things to talk about :).
And on the subject of roommates, my 2012 roomie, Kim, and I—clearly in the club, and not at a medical conference. #ClubMedX
And, Miss Zoe Chu. While puppy, and not people, she lovingly made MedX granola for me and we had selfie times, so she clearly belongs on this list :].
And, Jerry from Eli Lilly, who was in the elevator on Thursday morning before Partnering for Health when a bunch of ePatients yelled my name and hugged me as I got on the elevator. Except we didn’t know we were supposed to know each other yet, and then he sat down beside me at Partnering for Health and identified us as the people from the elevator and said he was wondering if we were Medicine X people. Because I am all class, I was like “Yeah, we were the people yelling and hugging in the elevator—did you feel left out?! Do you need a hug!?”—he accepted this crazy Canadian’s hug, so we are clearly meant to be friends. Also, he’s awesome. And broke into a presentation during Partnering for Health when all the patients were very confused on Twitter.
Sarah—one of the awesome ePatient advisors—with her CANADIAN SCARF, Rachel and I, after the closing ceremony of Medicine X.
And below, Britt (on the ePatient advisory team), Marvin—who is super sweet and I didn’t get to connect with nearly enough! :)—Rachel and I.
And, my own ePatient advisor and friend from 2012, Chris (he’s laughing about attempting to hug me with the giant hiking backpack on)—just before Joe (below!), Marie and I headed to the airport (where I almost lost my phone and Joe totally provided an amazing Joe-hug to alleviate my stress, and told me how I could get the Delta people to bring it to me to avoid having to go back through security, since I’d left it at the check-in kiosk).
These people—and ALL the people I met and interacted with at MedX
(I can’t even source those photos anymore :])
—are not the entirety of the story of Medicine X: but they are the part that matters most. As are the people that preceded my arrival for Medicine X to my own part of the journey, and the people who engaged in #MedX via Twitter: WE belong here.
(Photo of photo cred to Joe Riffe)
And here isn’t always a place: often, it’s a state.
And I love each and every one of you, and I hope our stories continue to connect in a way that makes a difference: Remember to not lose sight of where you were—where we were—hold on to that feeling.