Today […yesterday, technically] is World Asthma Day. Much the same as at 12:05 AM, I have no riveting thoughts on this. I took my inhalers, I went to bed. I woke up, I took my inhalers, I went out. I took my inhalers before coaching, I came home, I went to the pharmacy and picked up more inhalers, and I’ll take medicine again before I go to bed.
A photo posted by kerri (@kerriontheprairies) onMay 3, 2016 at 8:28pm PDT
World Asthma Day? It’s gotten boring. Just like this disease. I feel like the organizers aren’t putting the effort in, even. The theme has been “You can control your asthma” for as long as I can remember. Guess what? That hasn’t changed much either.
Maybe people with asthma would think differently about choosing to manage their disease, if they were given something to think about. We need some fresh air, y’all. (Bad puns…)
Fortunately, I’ve got a fresh announcement to make up for that.
Asthma.net launched TODAY.
Way back, I signed a blogging contract with Health-Union, LLC, which oversees Asthma.net. They took their time getting their ducks in a row—which is, as a contractor, super nice because since starting to submit work to them, everything has been SUPER ON THE BALL. I honestly do not have enough good things to say about working with them!
Asthma.net stands for the same things that I do: writing for Health-Union, I retain all credit for my work, and I get to choose my post topics—but, I have people to fall back on if I’m stuck for topics. And yes, of course, they pay me. Not only that, though, but they treat patients like experts—who knows our world better than we do, right? Health-Union has been at this awhile—and it’s clear they’ve done the work to get their relationships right.
Please, check it out. I highly recommend checking out other contributors as well, but here’s where you can find my posts.
…By the way, I freaked right out when I saw one of my posts as a featured post earlier. Whaaaaat.
So, as I try (again) to write my patient story for our National Asthma Patient Alliance executive meeting in Toronto this weekend (again. I can only talk about myself so much… Said the blogger…), I’m reminded of the importance of our stories.
And I’m grateful that more and more organizations are seeing the importance of sharing patient stories in empowering patients, too.
Disclosure: I am provided per-piece compensation by Health-Union, LLC, for pieces I publish to Asthma.Net. Health-Union allows me full choice over what I contribute, as long as it falls within their guidelines (which are basically like, don’t be mean to people). I was not asked to write this post, nor was I ever asked to share Asthma.Net on social media.
I mean… If they googled me for all of 5 seconds they’d know I’d share anyways. But, they never asked me to.
My asthma is a third of my age this year. At least for 3 weeks, anyways. Eight years ago today, I was handed a prescription for Ventolin by a walk in clinic doctor, at my second appointment with him where I adamantly refused his answer that I had “bronchitis” again.
I mean, had I been the same as I am now, I would have told him “That’s bullshit, this isn’t bronchitis,” but I wasn’t that patient yet. Although those were my first steps to becoming her—refusing the “authority” of a doctor who was about to misdiagnose me yet again.
The reality is, advocates aren’t born of perfect situations—if care were perfect, we wouldn’t have anything to advocate for. But in order to be effective advocates, we have to believe that our experiences matter, and that our stories can bring change. Advocacy is about creating something positive of the negative: it’s not reminding everybody about the shit we’ve been through constantly, it’s not about wanting to only share the injustices we’ve experienced, advocacy is not about the negative.
Advocacy is not just about me.
Advocacy is about wanting real change for ourselves and other patients. It is about the choices we can make to make our own situations better. Advocacy is about using our stories for good—finding the positive in the negative (and all that other flowery bullshit sounding stuff that is, you know, actually true)—if you don’t push through the shit, you don’t grow.
I’ve learned a lot in eight years. I’ve been places I’d never thought I’d go, and met people I never would have otherwise. Many of those things have nothing to do with asthma, but, would they have happened otherwise? I’ll never know. Eight years later, I know a few more answers, but I’ve got a thousand more questions. So, I’ll keep packing up all the inhalers I take—none of which are really new, and if they are, they’re not novel—and hitting the road. I’ve got hope that something better will come, but I’m not going to wait around 5, 6, 7 decades for it—I’ve got things to do now.
Sorry, science. I don’t believe you’ll cure asthma in my lifetime. And yep, I know pharma doesn’t have any interest in curing me anyways.
Prove me wrong, I dare ya.
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…
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.)