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While I often update my disclosures page without a whole post about it, this one needs attention called to it. Because, transparency.

Last week, I signed a contract with AstraZeneca Global, to participate in the Global Asthma Patient Partnership Program, after engaging in an initial webinar to get a feel for the experience, and receiving an invitation to join the Program for a year. I will receive financial compensation for my involvement on projects that I can opt-in-and-out of on a project by project basis. The initial webinar was also compensated by AstraZeneca.

I had hesitations. I thought long and hard. I asked questions about the contract. I deliberated alongside others in the same position; others aware of and sharing in the concerns I have about being involved as a patient with a pharmaceutical company. (You can also see this post from 2015 about going on a trip to Denver to learn about a GSK sponsored school asthma program on GSK’s tab, and my thoughts.)

AstraZeneca and its products are no longer a player in my own asthma management (I do have a Turdoza inhaler at home, although that’s a long story and is not actually one of my meds). I switched out Pulmicort for Qvar and then Symbicort for Zenhale close to five years ago. Had I been on AstraZeneca meds, this would actually be much harder, if that even makes sense, as their product(s) would be the ones keeping me healthy.

Do I think I am “partnering” with AstraZeneca? 

No, not exactly—more accurately I’d call it consulting. AstraZeneca can take or leave my feedback. I receive compensation either way. Just like I do and will write honestly, I’ll give them feedback honestly, too. Compensation won’t change that (unlike physician prescribing practices—see: Who Pays For the Pizza). I won’t be switching my meds out anytime soon. It’s likely that I won’t discuss AstraZeneca at all, which has been the case with GSK (considering I even get embargoed press releases since Denver).

Learn more about the AZ Patient Partnership Program by checking out the FAQ

Know that this is a trial run for me, too. I’m still getting a feel for this and how exactly I want to move forward. I can terminate my agreement at any time, but I am hoping that this is a positive experience—while it probably (almost certainly) won’t change how I see pharma, hopefully it changes how AstraZeneca sees asthma patients, which is maybe even more important.

Have questions? I cannot disclose anything discussed in the projects I consult on with AstraZeneca. (Nor, you know, their products/drugs, because I am not a doctor.) Otherwise, please let me know if you have questions or concerns and I will do my absolute best to address them.

Disclosure: As I have signed a contract with AstraZeneca, I provided this post for review by the Patient Engagement Director prior to publication (the only edits requested and made were referring to AstraZeneca by its full name). AstraZeneca did not ask me to write this post (rather, the opposite per the contract, although the Patient Engagement Director was encouraging). Transparency, however, is extremely important to me. I want you to know these things, so that we—as patients—can be more critical. 

Today my friend Sara asked me about my favourite asthma tracker app. If you’ve read my post, Technology, Self-Tracking and Asthma on Asthma.Net you’ll know that answer. (Disclosure: they pay me money but don’t influence my views, which is a sweet gig).

Pretend spoiler alert: I don’t like any asthma apps out there. (If you’re looking for one, though, read the article. I tried to look at a variety of aspects from price to what data was collected to design/user friendliness.)

So, with no coding skills what-so-ever, I set out to build my own solution. (I seem to do that.) I’m still working on it, and it’s far from perfect, but here’s what I’ve got so far. Keep in mind, I’ve got dozens of hours of trial and error behind this, and once I got it down, I used it (in the fragments created to that point) for maybe about six weeks before I hit a lapse, or burned out on it. I think, also, it will be easier (maybe not as effective, but easier) when I’m not at the cabin every weekend.

Element One: Google Forms/Google Sheets.
I started this whole thing off with a simple form for myself to fill out regarding my asthma symptoms (1-5 scale) and meds, trigger exposure, as well as my peak flow, FEV1, and oxygen saturation (cause why not?). I tried to tie symptom logging to taking my meds, as well as when I felt an increase in symptoms, so that it wasn’t biased by only reporting increased symptoms (which it still is, of course) and attaining a “baseline”. Unfortunately, I started this project when I was having a bit of a struggle with my asthma control (thanks a lot, rain and humidity).

I also used DO Button from IFTTT for a time to log my Ventolin use. Then I realized this was complicating things as I had to log each puff separately. This is where I began using QR codes.

Element Two: QR Codes.
I usually do not like QR Codes for whatever reason. I really would have preferred to use NFC tags, but, the iPhone 6 doesn’t feature a NFC tag reader like Android does (and whatever future iteration does, it’s ApplePay specific). So, QR Codes have to suffice.

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I created individual, colour coded (note the border) QR codes for each of my inhalers (and my Concerta bottle. And the nasal spray I realize I haven’t taken in forever). I made them small enough and simply attached these to my inhalers with tape (I had to scratch the shininess of the tape away but it worked okay after that, and after I learned not to put the codes on curves in the inhalers, which is difficult with Qvar). The QR codes link to individual Google Forms for each medication. I hit the corresponding button for the number of puffs taken (or, in the case of Concerta, one pill), and then hit submit.

My Ventolin (the blue inhaler above) you’ll notice has two QR codes attached. the one on the cap is for the Ventolin itself, the one on the side is for the symptom logging sheet. The peak flow meter has the link to the sheet to log PEF and FEV1. I also have the symptom barcode by my bed (where my peak flow meter usually lives and where I usually stand to take peak flows).

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It’s not perfect, but it’s kind of fun. And fun, in a twisted, nerdy sort of way is the motivator here. If it’s not nerdy fun, on my terms, it’s not happening. I log for myself, and my doctors don’t really pay much attention to my PEF/FEV1 results, nor do they ask I take them. Which I am okay with, since it lets me not get burned out on numbers.

I got Launch Center Pro for iOS for this reason, so I can swipe down from the Today(/Notifications) Panel and hit one button to launch NeoReader (my favourite of the free QR code scanner apps I’ve found), which I outfitted with a cute pink rocket ship icon thanks to Launch Center Pro. Because I have to make it fun, of course. What’s not fun about a pink rocket ship?

NeoReader also has a history option, so if I’m somewhere the code isn’t reading well (like the cabin), or the light is dim (sometimes with the tape the bright iPhone light doesn’t help) I can pop it open from history. Usually the code works and is faster, though. But, like all QR codes, sometimes it just doesn’t scan. I also had to cover the pharmacy provided barcodes with tape because often NeoReader tried to pick up the pharmacy barcodes instead of my QR code.

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I now have all of these QR codes importing data into different pages on the same Google Sheet.

Element Three: IFTTT.
For like, years now, I’ve had weather pushing itself to Google Drive for this reason. I also, I think, have humidity reports going there so I can correlate my asthma symptoms with humidity percentages and temperature.  

What I’d like to add.
A better summary of what I’d like to add next will be in an upcoming Asthma.Net post called “Quantified Asthma”. However, aside from NFC tags (which is kind of impossible unless I get my hands on an Android device—if anybody has one kicking around they want to send my way for Quantified Self purposes, let me know ;)), I’d like to be able to pull pollen counts automagically from somewhere but that looks impossible from Canada (I don’t have pollen/mold allergies per my testing, but it would be interesting to see if these have any impact on my breathing anyways, like particulate matter). 

Finding trends.
Like I said, I had a pretty crappy bout of breathing going on when I started this project. But, I’d like to grab a week or two a month where I log (since I can’t expect myself to do it all the time without burning out) so I can see differences between seasons. I used Datasense, Sheets and Excel to play with my data, but Datasense is hands down my favourite. I haven’t taken a single data analysis course, so, this aspect has got to be pretty user friendly for me, and, Datasense is a lifesaver for that. Thanks, Intel!

So, that’s it for now. 

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.

And I wore this shirt that I wear one day a year.

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.

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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.

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

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

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

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

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

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…