I got an e-mail Monday about a secret flu shot clinic for employees of my health region, including Disability Support Providers (me). It was a ten minute walk from my house (where I got led into an Authorized Personnel Only room), convenient as I am also high risk because of my asthma. Also it is basically next door to 7-Eleven. And a lovely morning for a walk.
It is the first day of Fall, the people of the internet (aka my friends on Facebook) are telling me. It’s kind of hard to believe given I got back from beautiful California less than a week ago where it feels like summer and is generally pretty. Alas, my favourite season—Fall—is upon us, and I engaged in an (iced) pumpkin spice chai at Vancouver airport at probably ten-something PM on Monday night. (Pumpkin spice chai is amazing. I was getting ehhh about normal pumpkin spice lattes, honestly, and I am thrilled by pumpkin spice chai lattes.)
And is obligatory on the first day of Fall, listening to Come Winter by Daphne Loves Derby (on repeat), as has been my general habit since about 2014, if not earlier.
If you’ve got Apple Music, here’s a link to a slightly different EP version that I’m enjoying.
Fall is my favourite season not just because of pumpkin spice. I enjoy the cooler weather, the jeans-and-hoodies combo, the foray into toque-season (without the brutal cold associated with toque season), the fact that Goalball starts soon (and archery!), the fact that my lungs generally like Fall, and the fact that I get back to a bit more solid of a routine—for the lack of routine I generally have, even in the non-Summer months. Despite some of the worst moments of my life happening in the beginning portion of Fall (looking at you, 2013 and 2014, and even 2016), these have all come with resolution attached—“part of a change for better” (I Swear This Place is Haunted, A Skylit Drive)—or at least a piece of resolution that produced a change I can, at least now, feel positively about.
This year, again, fresh off a return from Stanford Medicine X, and subsequent #MedXHangover and ongoing recovery, I feel that sense of renewal, that sense of recharged passion and purpose for creating change, both in myself and in the world. It doesn’t hurt that I’ve got some other advocacy-related travel opportunities in the works (travel may exhaust people but it energizes me), or that I met so many amazing people last weekend at MedX. It doesn’t hurt that the people I met and the experience I had at IDEO for the Medicine X – IDEO Design Challenge re-inspired me to think differently, creatively, in terms of “How Might We”s and innovation and possibility and better. No, spending a glorious two days with one of my favourite people on earth, Stephen, in Santa Cruz to relax and recharge even prior to embarking on the Medicine X whirlwind of inspiration, that didn’t hurt either. Meeting a dozen Canadians at MedX reminded me that things are possible, change is possible, even in our slow-moving, lack-of-progress medical system (although I maintain Toronto is more receptive to change than Winnipeg/Manitoba/our ridiculous healthcare-killing Conservative Government is). I am ready to do more. Batteries recharged.
I am re-energized. Re-inspired. Thanks both to California, to the MedX Family, to friends, and to the crispness of Fall.
Well, I’m sure another pumpkin spice chai latte wouldn’t hurt, either.
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.
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.
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.
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).
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.
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).
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.