advocacy / asthma / health advocacy / life

owning asthma: seven years… and counting.

• by kerri

I was diagnosed with maybe-asthma seven years ago today.

Spoiler alert: I have asthma.

And basically all I did about it today was take my inhalers this morning, and wear shorts outside for the first time this year, and only realize it was my asthmaversary when I checked the date to write a post on Facebook commemorating my shorts-wearing. I then commented on my frustration that my inhaler flew out of my shorts pocket, because that seemed relevant to both points.

So mostly I did nothing about it. Except for whatever reason, much of my life at this point has been shaped by asthma. Not negatively, not positively, it just is. Just like it just is when I’m having a standard breathing day: not perfectly asymptomatic, not intrusive, a cough to remind me that my lungs are imperfect, and a couple hits of Ventolin before heading out to coach to hopefully keep things in check running around the gym… the gym I wouldn’t be running around in, probably, if I didn’t have asthma. Coming home to do the work and volunteer/advocacy things I definitely wouldn’t do if I didn’t have asthma. It just is, at least today, like any other thing: present, but not defining.

In seven years, I have not “grown out” of my asthma. But I’ve grown with it, grown through it. On Sunday, I’ll head back to Toronto for a National Asthma Patient Alliance Executive Committee meeting on Monday and the Asthma Society of Canada’s Clearing the Air Summit on Tuesday, World Asthma Day. My friend Elisheva, the epic World Asthma Day party thrower, is convinced I’m having the coolest World Asthma Day this year (I have to go buy glow sticks, because nothing says someone let you be Vice Chair of the National Asthma Patient Alliance like glow sticks…). And yet, for the appreciation I have of so many things that have weaved their way into my story because of asthma—and for many cool things that have occurred and many friends I have been blessed with—I have to blame/acknowledge this day seven years ago. The day where I was handed a prescription for an inhaler, and then an inhaler, and couldn’t get any of the medicine in my lungs without an AeroChamber (I’ve mastered that skill since); the day after that; the days, weeks, months, years that have followed, of learning to coexist and make life better with this disease that, even through the surprise good things it has provided, I still hate with everything in me and I know is not going anywhere.

Over the past several years, I’ve chosen to be engaged and own my asthma—just like I choose to own everything everything else. I can’t pretend it doesn’t exist, but I refuse to let it define me. I may engage in a lot of things because of asthma, I may find myself a lot of places because of asthma (c’mon, I can’t turn down a good travel perk for asthma-related good things—also have Denver coming up in May), but I engage in more things simply with it along for the ride. I still get burned out sometimes, but, I try to keep asthma in the back of my mind rather than the main focus. In advocacy, I am rarely thinking about my asthma, but rather the spectrum that this disease actually is—advocacy is not about me: advocacy is about something far bigger than I can even attempt to articulate at the end of the day. However, most importantly, I hope that the ripple-effect of advocacy and all the things I do, and my friends do, both because of and simply with asthma, are not for nothing. I hope the collective we are making progress.

I realize that I will probably have this disease for the rest of my life—so, I hope that the asthmaversaries keep coming for decades to come.
And maybe on asthmaversary eight I won’t forget until 5:26 PM and I’ll have a cupcake. Or cupcakes. And otherwise do nothing special, because any excuse to have a cupcake is good enough for me, even if it’s just another day of another year of living with asthma, instead of at war with it. I can’t be my own enemy, so I might as well be awesome instead. Even if I have to be awesome and breathless on occasion.

 

PS. Clearly I did not do Blog Every Day April. I barely blogged any day in April, never mind every day. Also I was unsuccessful at NaNoWriMo. I tried.

asthma / life / stuff bloggers do / work

disclosure update / new jobs! | Identity Doctor, Inc. & University of Alberta

• by kerri

My full disclosure statement can be found here, and is updated each time I undergo a change in partnerships, specifically/especially ones in which I have an online presence or may be of greater impact to individuals reading this blog (like how I disclose the heck out of asthma related things because every group is somehow intertwined and I am kind of heavily invested in that subject).

My Identity Doctor (/Identity Doctor, Inc.)
Community Outreach Coordinator 

As of yesterday (01/08/15), I re-entered an agreement with Jon at My Identity Doctor. This time, I’ll be doing some community engagement work for his online medical ID jewelry company (I’ve worked with Jon before, and you can find this on my disclosures page). The bulk of this position will include me researching and reaching out to potential MID partners—patient support communities, both online and off, whose members could benefit from wearing medical identification jewellery—and providing them discounts to help them encourage discussion [and action] among their members to protect their wellbeing by wearing medical identification. (If you’re now an intrigued community leader/moderator, or have questions or concerns about this, shoot me an e-mail.)

University of Alberta – Pulmonary Research Group
Research Associate 

Today (busy week!) I had a follow-up phone call solidifying an offer of a Research Assistant position with the University of Alberta’s Pulmonary Research Group. While there may be some overlap with my role as the Canadian Severe Asthma Network Patient Lead, I’m very excited that I will be (remotely) assisting with a variety of aspects of an asthma research study, as directed by the study’s Primary Investigator, Dr. Dilini Vethanayagam.

 

Here’s to new horizons! As always, any questions about these, or any of my partnerships, check out my disclosure statement first for the whole story, and drop me an e-mail if you still have curiosities for me to address.

asthma / badassmatics / Canada / health + fitness

cold avenger pro review

• by kerri

I subscribe to about 5 different things that are like Groupon or TeamBuy [so, yes, two of those, plus three or more]. One day, one of them was proclaiming its sale of cold weather face masks. Good idea, internet! My face can not freeze maybe and I can maybe proceed to not continue wrapping very long scarves around my face in a ridiculous fashion as I have been doing since circa Winter 2008.

Except, then I realized the problem with why I don’t wear such items and instead use scarves ridiculously is because they look kind of ridiculous and water just freezes to your face and then you end up cold anyways. My bigger issue is breathing in cold weather, and the issue with these masks is that I invariably end up fogging up my glasses or something and then can’t see, and can’t really get home or indoors or anywhere to be able to see without removing the scarf and then that does not solve my “cold air is among my worst asthma triggers” problem, right?

Enter ColdAvenger.

“If you can’t breathe, you can’t play.”

—ColdAvenger 

Okay yeah, that’s a hell of a slogan there, especially for this Canuck, right?
Then I read about the science behind the mask. Because, let’s be honest here… the black version of the mask looks kind of Darth-vader-esque, and as a 23-year-old-girl who frequently wears pink and purple outerwear, I’m not sure that Darth Vader is the look I’m going for.
Except I’m not into sounding like Vader, either, and we’ve already got enough Darth Vader asthma memes, right?
And so on.
Anyways, I reached out to the cool people at Cold Avenger, told them a bit of my story and offered to review on my blog, and they offered to send me out a media package to try out the Cold Avenger myself. Phil was awesome to deal with, friendly and personable, and—get this—I e-mailed my request in, and had a response within ten minutes. So, clearly their customer care isn’t lacking! Phil and I discussed what I intended to use the mask for, and he decided that the Cold Avenger Pro half mask was the better bet for me, “Just in case you start jumping out of planes with your new ability to breathe in cold weather.”
That’s what I’m talking about!

So, in avoidance of looking like Darth Vader (though very confident in my overall level of badassmatic!) I opted for the white “SnowHunter” version of the Cold Avenger Pro half mask, which arrived in my mailbox from Missoula, Montana little more than a week later.
Except it was still October then so clearly I did not yet need the mask […fortunately. I do live in Winnipeg, after all].
So I tried it out a few times last week once the hardcore chill hit, and damn, I am okay looking the part of a super hero/villain/whatever I am not up on my superheroes really for the way this thing works.
The science (more technical version here): Breathe in cold air to the mask. Cold air enters through vented part up front (which is adjustable—so if you need a higher level of ventilation to accommodate for increased respiratory rates due to activity, you can rock that, but if it’s super windy and too much air is being pushed in, you can make the gaps smaller/fewer and thus allow less air to be forced into the mask.) The very (flexible material) that protrudes out over the nose and mouth also catches the moisture/warmth of the air that gets exhaled, so that the next time air is inhaled, it mixes with some warm particles and… viola, no more breathing in crazy cold air!
A bit of a user-end primer on how the valve system works: if I’m doing something of low intensity, like walking to the bus except straight into a north wind, I’ve got the internal bit adjusted to let less air in at me because my respiratory rate isn’t that high and because more air is already being pushed into the mask. [Science, I tell you. Diffusion is where it’s at.] Keeps the air going into the body warmer and thus, the Cold Avenger team argues that it keeps you warmer by doing so—pretty cool, right?
So… Does it work?
 (Note: I’ve since found it is much better to run my earphones UNDER the mask. Also, on this 10 minute walk to the bus, ice crystals formed on my earphone wires just because of how it was hanging by the mask. Easily rectified by running the wires along the side of my face—and, proof of how cold it actually was outside?)
First thing’s first, you’ll see the gap where my earphone wire goes in on the right side—rectified, as stated above, but this was the culprit for the glasses fogging I experienced. The Cold Avenger, for ski goggle wearers and glasses wearers alike, comes with a nose wire so that it can be adjusted to seal more completely around the face.  This picture is from day 1 of Cold Avenger use. By day 2, I had the kinks worked out with the earphones and my hair and everything (the toque’s real use this day was actually because my hair kept sliding around outside the mask, and into my eyes/face and whatnot, so the toque’s sole purpose was actually keeping my hair back ;).
My asthma is really triggered by cold air (yes, I know, Canadian problems much?). Within five minutes of being outside in weather like it was on day 1 of using the Cold Avenger (-10*C, or -18*C with the windchill)—or even milder sometimes—I’m usually at the very least coughing, or feeling some degree of breathing discomfort. WITH the Cold Avenger? I didn’t cough at all until I got to the bus stop (8 minutes into being outside, walking fairly briskly). In fact, while the Cold Avenger people say [and I won’t dispute them, just an observation!] you’ll be warmer in the mask, I actually think I felt colder simply because I wasn’t hyperfocused on my breathing being crappy! So, hey, if I’m going to feel a bit colder because I can breathe!? I can deal with that, guys.
I’ve had a few friends ask (unprovoked even!) about the mask, and I’ve had nothing but good things to say—I mean, of course with the occasional joke included about being a superhero, how could I not?! I can’t wait to find some ice and try it out while skating or playing hockey outdoors with my friends, because if it can make those things more enjoyable, then I will be excited—and, as Phil discussed, if I find some planes to go winter skydiving out of, then hey, I’m ready for that, too! While I used to sometimes have to pre-medicate with Ventolin before even going outside briefly, I hope the Cold Avenger brings me back to a place where I can simply pre-medicate for exercise outdoors like normal instead of for simply going outdoors!
While I got this thing for free to review, now that I’ve tried it and experienced how it works with my asthma, I definitely think it would be worth shelling out the $60 for if you live in a place like I do where it’s cold for up to half the year and have cold induced asthma, or simply do a lot of activities outside and are looking for a solution that doesn’t restrict your ability to breathe or cause ice to form on your face like many alternatives (the crazy scarf wrap, for example) do. Plus, as you can see, I highly recommend upping your badass quotient and rocking some coordinating sunglasses with the Cold Avenger, too.
…Because I’d say that goes with the badassery of avenging, no?
Disclosure: I reached out to Phil at Cold Avenger who agreed to send out a mask and a kit containing information and stickers (!!!) for free for me to review. I offered to do the review in my initial message, but was under no obligation to provide a favourable review (but, they know their product, so clearly they knew they’d win me over :]). 
edit 5:34 pm 11/24/14: Kat pointed out that I meant diffusion and not osmosis up there. She is correct.
advocacy / asthma / badassmatics

find me at “anonymous asthma”!

• by kerri

Head on over to my friend Olivia’s blog to check out my guest post/interview from this weekend, where I share a bit about my asthma story and perspective on asthma, what I do with the Asthma Society of Canada/National Asthma Patient Alliance and the Canadian Severe Asthma Network, and living positively with asthma.

Olive lives with asthma and is involved with Asthma UK and shares her stories through her blog, as well as on Instagram. Thanks for having me share my thoughts, Olive!

advocacy / asthma / health + fitness / health advocacy

#ascNAPA webinar: flu and asthma

• by kerri

A few months back, Dia and I began collaborating with the staff at the Asthma Society of Canada [ASC] to build a new resource for patients in the form of educational webinars. As flu season begins to take hold (Flu shot? Check? I hope so!) we decided that the flu and how that whole situation can be far more complicated with asthma, and other chronic diseases, was a good topic for our first go at a webinar!

Prepare for flu season by joining NAPA and ASC’s webinar session on Influenza and Asthma! Thursday November 18th at 12:00pm EST.
Register today at 

Dr. Shelly McNeil (Dalhousie) is lined up among the presenters, and you can learn more—and register!—at the link above. I hope you’ll join us and engage in better managing your asthma, or helping to protect someone with this disease, during flu season!