It’s been months, literally months since I’ve written here. Probably because I’m writing other places on the internet. So here I am, wrapping up May after I haven’t written since January 30th. I have half written posts around on adventures since then, and words that have been published elsewhere (aka asthma.net). And some things that’ll never see the internet, shitty circumstances where I was somewhat stabbed in the back where I’d trusted someone and then had to clean up a mess they made–which was even more mentally time consuming than physically time consuming (if that’s even a way to explain time, in a physical sense).
March, April, May even have involved airplanes and time invested and spent and wasted and given.
I’ve gotten really sucked into podcasts which take more time than I realize–and I am smarter if not necessarily better for it. I’m thinking of going back to school and taking, no word of a lie, political science, even though prior to six or so months ago I had no interest in politics although I’ve been strong on voting since I could vote. At the start of May I was in Ottawa for World Asthma Day, in April, I was in Palo Alto to present at Stanford Medicine X | ED, and in March, I was in St Louis, Chicago, Washington DC, Philadelphia and Toronto on a whirlwind adventure that happened t settle around two conferences.
Here are some (a lot, but only a sample) pictures.
[Also I can’t figure out what I’m doing so to see the flickr album if it doesn’t load, click here.]
Not to say there wasn’t more.
There surely was.
But without writing everything down–whether here or in a journal–I’m living through Facebook and instagram and Twitter and a camera, and being in the moment, but maybe not translating that into reconstructable memories as readily. And maybe that’s okay but I think maybe I want that to change too.
So here I am again. Back. Hopefully more intentionally. (Therapy.)
Because I’m getting closer–checking my Fitbit, logging nutrition with myfitnesspal (for five days now), and I actually rode the stationary bike the other day. Now I’m writing. Next is meditation.
Getting back to who I really am. And some (small bit of) routine.
It’s #BellLetsTalk Day, which here in Canada is the one day of the year that people—for better or worse, and sometimes to just bash Bell—stop to talk about mental health. I’m not getting into the Bell thing—it’s a thing.
What I am getting into is this country has taken the time to pause and reflect. This is awesome. I have seen so many of my friends on Facebook share their struggles and triumphs and stories of living with anxiety and depression; of going to therapy and of choosing to try medication. People who have dealt with these things since childhood, or who are navigating mental health concerns for the first time as adults. To all of you who have shared your stories—today or any other day—I am so proud of all of you. Thank you for being bold, embracing who YOU are, and sharing your journey: I hope that it makes people in your world see “mental illness” differently, and see you just the same, because you are. You are important and your story is important. Every damn day, not just today—the highs, the lows, your story is important. Every. Freaking. Day.
I am right here with you.
ADHD is a neurodevelopmental disorder, but one that is also considered by some—including the Canadian Mental Health Association—a mental illness. Like depression and anxiety, ADHD is caused by an imbalance of chemicals in the brain, specifically neurotransmitters.
And I’ll be honest, there are days that I can’t believe that. There are days that I see attention deficit disorder as a blessing or a gift or whatever cheesy, cliche thing people say and how could that be a mental illness? How could it be something that isn’t awesome? Days that I am on my A-game, that I have witty remarks that come out the right way, and that words just fly out onto the page in front of me, and days that my energy is exploding out of me in a way that actually feels good.
Except, more often, there’s the flip side to ADHD. The self-doubt, the feeling that I can’t do things right because I have failed to meet expectations so many times, the times I cannot focus enough to figure out the simplest of things—or even when I can focus, there is information my brain simply can’t process. There are the times that not only can I not understand why I am reacting to things the way I am, but also that it is a tidal wave: my feelings just crash over me and I can’t figure out how to just stop this and react how I know is “normal”. It helps—a bit—knowing that this is common for kids and adults with ADHD alike, that we legitimately feel things more intensely and for longer than other people do . But it only helps after the fact. There are the times I hyperfocus and fail to get anything done that I actually need done and only let myself down; others that I again feel like I’ve failed someone else. The words “I forgot,” or “I’m sorry,” are not less true when they come out of my mouth: I mean it. But I get it: it’s hard to accept, again, when you’ve heard it before, because it looks like carelessness. I don’t blame my ADHD—I blame myself, because ADHD and I coexist. I am not my diagnosis, but I cannot separate from it, either. ADHD isn’t just about academics: it’s about life. And it sucks when your failures or shortcomings are not for lack of trying, they are just because my brain is not wired that way.
But here’s the thing. It’s so much better than it was. It’s better knowing that there is a reason why some things are like they are. ADHD is not an excuse, but it is an explanation, if even just for myself sometimes. It’s better knowing how to figure out strategies that work rather than just feeling like I’m stupid. It’s better knowing that this is how I am wired, and that is okay.
My first appointment with my psychiatrist back in 2013, she did not say it but she clearly made a note that I appeared anxious. I started medication for ADHD the next day. When I met her again a month later, early in the appointment she commented that I seemed less anxious even just on a very low dose of Concerta, and asked if I had felt anxious before. I told her that I hadn’t, but that things just “felt better” inside me. It was hard to describe—she understood. Every appointment I have seen my psychiatrist she actually asks about side effects. She asks how things are going. She asks how my mood is. Every time. Because she knows the statistics.
Research states people with ADHD are at increased risk for mental health issues: nearly half of people will experience an anxiety disorder, well over a third will deal with a mood disorder like depression, and 15% will develop a substance-use disorder.  However, if ADHD is managed correctly, be it through whichever combination of exercise and therapy and medication and eating well-ish, these things can either be caught early and treated early—maybe even be prevented. Maybe.
I am fortunate, I do not currently have any co-existing mental health concerns. That doesn’t mean that it hasn’t, won’t or can’t happen.
ADHD medication doesn’t give a person with ADHD any special ability to concentrate. I probably still focus less well than most non-ADHDers on 72 mg of Concerta a day. I don’t know because I’ve never had a non-ADHD brain. But do I feel better? Yes. Even though all of the above that I still struggle with. Part of it is because of medicine, but part of it is simply knowing what I am working with, knowing that other people experience this, knowing other people get me.
We “talked”. Now, don’t shut up just because Bell does.
Because we need this conversation. And we need the conversation to go further: to ensure mental health care is easily accessible—and affordable—for all Canadians. To make therapy with high-quality therapists affordable and accessible*. To ensure that services are available on demand, when people need them—weeks, or months, or years later. As a Canadian, healthcare for your body comes with the package—its a right. But care for your brain? It’s still on the table. (Which is closer than it’s been for a long time.) Stories are important, but so is access to care.
We need this conversation because we need every Canadian to feel confident they can be supported when they choose to share what they are facing.
Because my diagnosis is NOT about whether or not you believe it exists or not. It exists.
And we are living, breathing, singing, dancing proof that WE EXIST.
*Affordable and accessible therapy, to me, means to make therapy that is not income dependent or not something that is dependent on (awesome) charitable organizations like Aulneau, or educational institutions like the University of Manitoba Psych Services Centre. I’m uninsured, and if I can’t afford insurance, I can’t afford a $150 an hour therapist: which doesn’t mean that I should (or in some cases can) just wait longer.
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.)
People 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.
Then 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.
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.)
This dude is sleeping with his stuff in a very precarious position. The flight attendant seemed confused.
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.)
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…
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…)
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!)
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…
…The first picture…
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?
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…
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…
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 ;).
How freaking beautiful is this cake?!
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!)
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.
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.
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).
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.
Here’s Steve and I being sleepy in the Uber SUV.
We are good shoulder sleeping heights for each other.
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 means that this little girl was in school on Tuesday.
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—
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:
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…
(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…
…Navigating this security line with our plethora of medications and neb compressors…
We have a lot of things that, together, we want to make better
(or at least suck less?)
“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
(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 future—or the past, I guess.)
Tomorrow, I jump back on a(n agonizingly tiny) plane, this time to Denver, Colorado (another new dot on my travel map!), for the GSK Asthma Summit (disclosure below).
I’ll be connecting with others who blog about asthma, and learning more about asthma management in schools and the impact of a GlaxoSmithKline-sponsored program being run in Colorado and Connecticut (note: I cannot spell Connecticut without spell check. I am not sure why). I am excited to learn a lot more about the Building Bridges program, and to hopefully learn how we can apply some of the strategies being used in this program to school asthma care here in Canada.
The asthma blogging (and advocacy in general) community is surprisingly small considering how widespread this disease is: 10% of Canadians and 8% of Americans live with asthma. Yet, I’ve often said that with commonality comes apathy: just like we don’t have crusaders against the common cold (…if you are a rhinovirus advocate, please forgive me?), we seem to be short on people creating a conversation, creating attentional rise, creating change for those living with asthma in a world where if you know 50 people, you probably know 5 people with asthma (…and I bet most people know way more than 50 people). I’m looking forward to reuniting with my friends Steve and Dia, of course, but I’m also excited to meet others who talk asthma in the online world—you’d think with there being few of us, we’d find each other easier, but that doesn’t seem to be the case. So, I appreciate GSK bringing the handful of us invited together for this event—GSK also ran a Lupus Summit last week, and I enjoyed reading the tweets from Tiffany and others with lupus who attended the event.
Here’s the deal (official disclosure, again, below): GSK US is paying for everything associated with the Summit and trip to Denver. I know that there are all kinds of perceptions around this—my own perception changed drastically after meeting Joe and Jerry from the Clinical Open Innovations team from Eli Lilly: Pharma creates these opportunities because there are people in these organizations who legitimately care about patients. The perception that it is us [patients] vs. them [pharma] needs to change. I won’t deny that for a time pharma likely was the cause of this (because like, “yes, we’d like to help you but this drug is $570,000,000 so pay us and stuff,” can be how it seems, and is perhaps to an extent, accurate), but there are people working for these companies now who are there because they realize that this ideology exists and they know that, for our wellbeing, that needs to be changed. Two weeks ago I met, again, Helene from GSK Canada, as well as people representing AstraZeneca and Boeringher Ingelheim. They sat in on our National Asthma Patient Alliance meetings, because they also responded to the ASC’s need for funding to make those meetings happen and get us all there from our varied map-dots across Canada. Similarly, GSK US didn’t just turn me away because I’m Canadian—I’m still jumping on a plane to Denver tomorrow, and Dia is, too, because they (hopefully.) realize that the only way to create solutions for patients… is to create them WITH patients.
Because it is not patients vs. pharma: it is not us vs. them: my conversations with Jerry and Joe proved that to me, as did speaking with Helene, as did my phone call with Juan from GSK US (as, I am sure, will meeting him and others at GSK tomorrow): we are, to snag the MedX workshop title, partnering for health. Even if the partnership is not perfect (and what partnership truly is?) at least they are trying, and at least patients are trying to meet that effort of stepping towards true partnership—which, in an ideal world, would be far more constant but remain unbiased. And with that, it needs to be understood that even if there were no trip involved, if any pharmaceutical company reached out to me for feedback, or to hear my story, or anything, I would be okay with that. The reality is, though, that the patient experience needs to be valued. Putting me (us) on a plane to spend all of 37 hours from wheels up to wheels down in transit and in Denver is a really good place to start in building relationships that actually mean something and can affect change without being sketchy. Then, hopefully, we can do more. I am not in any sort of formal partnership with GSK (or any other pharmaceutical company), and the thought still kind of feels sketchy, however, while diabetes tech companies do such events frequently (maybe or maybe not run by pharma), there’s a lot of uncharted territory in this in the asthma world. And I am willing to meet halfway and see how this goes: hopefully to create better strategies, better care, better things for people with asthma.
GSK is not making me do anything in return. I don’t have to blog or tweet a damn thing If I don’t want to (but I will. With complete honesty. Because that is even more important than, and within, partnership). As a patient, I realize that now, after many decades, pharma is trying to make the effort with us—even if it is trial and error, I am just happy they are trying while expecting transparency from the patients they engage (but as I always am).
It just so happens, however, that separated from my skin by a thin layer of fabric is a near-constant inhaler in the right pocket of my jeans, made by GlaxoSmithKline worldwide. Because, unlike the generic manufacturer, it seems GSK actually gives a shit that their inhaler doesn’t taste like mosquito repellant. It’s really about the small things sometimes.
Well, and about the big things, like valuing patient experiences. We’re all learning here, and I’m happy to be a part of that learning curve.
Disclosure: GlaxoSmithKline United States is paying/reimbursing all costs associated with attending the GSK Asthma Summit, including roundtrip airfare to/from Denver, CO, hotel, ground transportation and meals. (And they will apparently pay my Roam Like Home costs, which was beyond exciting—sidebar). I am 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).
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].