This is a Story from California, but it’s not going to become part of the Stories from California. Asthma is the reason I went to California, asthma was a big part of the story in California, but I want California to remain about more than asthma. I want it to remain to be about the stories, the change and the people.  In the asthma story of the last four and a half years, it’s a significant event, but I wish with everything in me that I hadn’t had to deal with it in CA.

I’m still coming off of my post-California high two weeks later, which may have intensified after I started feeling better. As I am hopefully on the tail end of the recovery exactly two weeks after staring the prednisone, here’s the story of what the heck happened with my lungs in Cali.

It’s been a couple years since we sorted my inhalers out and finally found a really good balance of medications that keep my asthma in pretty decent control. I take three or four inhalers a day but am overall taking less medication than when I was taking less inhalers, can usually turn things around with a nebulizer treatment or two if my lungs get rough, and am really generally pretty good at predicting where my asthma’s going and how to spin it back on track rapidly. Viral infections, like in the majority of people with asthma, are by far my worst trigger, and I’m lucky in that I don’t deal with much in the way of associated allergies–my triggers are primarily intrinsic, meaning either things going on within my own body trigger it [like exercise or hormonal changes], or my symptoms are triggered by non-allergen things like chemicals, humidity and cold. Infections, as noted above, are also intrinsic triggers.

My first flight was pretty rough on the breathing. I attributed it to being in a cabin full of fragrance-y people [I’m pretty sensitive to fragrances] and a couple dogs [I am apparently mildly allergic to dogs, but I refuse to acknowledge this]. At 38,000 feet, one does not really have a ton of option to get away from what is around them, so I sufficed with being happy that i had a one-seat buffer between myself and my row-neighbour, turned towards the window, and used my inhaler a few times throughout the flight.

By the time I got to YVR, I was good to go, made a speedy jaunt through the airport, cleared customs and security, and found my gate with time to spare.  Then, too much time to spare because my flight got delayed an hour and a half because of fog at SFO.  I figured at this point that a combination of the plane environment and stress had triggered the flaring on the first flight, grabbed some Cinnabon, and eventually found myself in San Francisco feeling pretty good aside from the occasional [normal for me] coughing. All good.

Of course, it would have been too simple if things resolved there. It would have been too simple if the crazy flare would have happened when I was hanging out with Steve who would have been all over rocking his Respiratory Therapy skills on my respiratory situation [which he did an excellent job of doing by phone, however–so.happy I had him around, oh my goodness]. And it would have been too simple if I’d actually prepared properly for something to arise while I was in California. I brought my nebulizer and five vials of Ventolin because usually all it takes is one or two to kick anything I’ve got going on [I can neb every four hours if I’m sick, so realistically I should have packed more meds but really, I was convinced I’d be fine. Wrong.], and I forgot to bring the power cable to charge the neb compressor battery–a mistake I won’t make again any time soon. I hadn’t brought my peak flow meter, so I was flying on only how I perceived I was feeling/responding to the meds.  All the nights I was in California I slept off and on, totalling four or five hours a night because of how I was feeling and using my inhaler anywhere from two to five times a night. When I start having nocturnal symptoms and actually waking up because of my asthma is when I know I’m in a bit of trouble.

[Here’s the one where I give asthma The Finger again on Friday in Palo Alto . . . Yes, hi Mom. Just warning you.  There’s a similar picture from Saturday morning].

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On Friday morning, I finally woke up for real after several useless inhaler hits, and did a Ventolin/Atrovent breathing treatment. Boom, open lungs [thanks Steve!], good enough to walk to Stanford with Kim. Six hours later though, when the treatment wore off, the inhaler wasn’t cutting it again. I busted out everything in the arsenal in my backpack and even braved some Ventolin through the spacer [there is nothing better than being surrounded by a group of ePatients, by the way] and while it took the edge off, it wasn’t killing the cough or the tightness. My neb was back at the hotel and not exactly an option, and because of the lack of power cord I was wanting to [as I usually do] neb sparingly, which probably could not have been stupider seeing as my lungs were feeling worse than they have in the last two and a half years.  By afternoon snack/break time [snacks are plentiful at Medicine-X] I’d talked with Steve and Morgan [another respiratory therapist] and threw back 50 milligrams of prednisone. Thank God that my medical team spans beyond my official medical people. [I also begrudgingly took the shuttle back to the hotel knowing the walk would not be a smart idea.]

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As I’ve said before, prednisone is not something I like in the least. I fight it with everything in me, but at the point where I am three thousand kilometers from home, having the worst asthma exacerbation I’ve had in two and a half years [the last time I needed prednisone] and knowing I need to fly [and preferably be comfortable in the process] in two days, it was only with minor hesitance that I started taking the drug. My thought was I’d start at 50 mg, and instead of doing a straight-shot of 40 milligrams for 5 days like my prescription said [confessions, confessions], I’d start at 50 and rapidly taper off by 10 mg a day.

As stated in a previous post, having not taken prednisone in two and a half years [it was shortly after my nineteenth birthday when I brewed a respiratory infection for two weeks and didn’t realize–read: paying attention to my body fail], and that prednisone is notorious for crappy side effects, I had little idea of what I was getting myself into and what the steroids were going to do to my body. Whether it was starting off at 50 mg, the fact that I hadn’t taken it in 2.5 years or what I have no idea, but while my asthma turned around pretty significantly in 24 hours, the side effects hit me hard. On Saturday I was somewhat of a starving, thirsty, tearful mess because of the prednisone. But . . . I could breathe. In those moments, it felt worth it to be eating nearly everything in sight, worth it to be waking up to drink water [and thus go to the bathroom], and even worth it to be tearing up at every.freaking.thing. [By 72 hours later, I didn’t quite have the same feelings that breathing was worth it–maybe deep down.]

So, running on four- or five-hours of sleep at a busy conference with crazy asthma going on is not a recommended activity. I had a bunch of really beautiful people around me to help me through it emotionally. I honestly have no idea how I’d have gotten through the experience without them being there for me, especially having Carly there who knew first-hand how the prednisone side-effects go down made me feel so much better about the asthma/steroid stupidness.

Sunday after some craziness, steroid-induced hysteria and miscommunications, Steve got me back to the airport and I was feeling okay without a breathing treatment in me since I was responding to the inhalers again, so I figured I was on the up. I took 35 milligrams of prednisone in Vancouver airport with an iced coffee.

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I’m unsure iced coffee is a recommended prednisone vehicle, but whatever. Like I said, you do what you have to do to keep healthy when all the situations surrounding being healthy are so not there.  Is it obvious how exhausted I am at this point?

In Vancouver, my flight got delayed an hour and a half [this feels like the way there, I know]. My lungs were starting to act up again, I was tired, I hadn’t done a breathing treatment all day, and I had an exam to write the next day, and I just wanted to get home. At some point during the four-and-a-half hours I spent in Vancouver International Airport, I found myself in the entirely non-awesome situation of doing a breathing treatment in the bathroom.  Both prednisone and bathroom nebbing are pretty strong testaments to how shitty I was breathing, because really, usually I hesitate to use my inhalers in the bathroom, never mind the neb. I don’t think I truly realized how sick I was until a couple days after I was home.  With a neb treatment deep in my lungs, I felt a bit more human and ineffectively worked at some Darwin and had friendly conversation with Woman from Prince George and Man Going to Calgary who were also stuck in the airport since WestJet’s flight map system was down. I was also realizing that writing an exam the next morning was going to be bleak if I still couldn’t breathe properly and was still effed up from the prednisone. I wasn’t exactly giving my lungs a chance to get better aside from pushing them full of medicine, because I really had little choice at that point.

I tried to get some sleep on the flight home, but essentially ended up listening to Matthew Good the whole time and spacing out the window. Prednisone is a giant catch-22 in which you’re exhausted from whatever you’re taking it for, yet it keeps you wired [don’t blame the iced coffee, that stuff has no effect on me. See also: delicious.] and makes it hard to get any sort of legitimate rest so that your body can recover. What fun. Odette by Matthew Good got me through yet another long span of hours of asthma:

I look tired but I, I feel wired and my body hums like it’s coming undone.

By the time my flight landed at home at 12:30 AM, I was so burned out. All I wanted to do was go to bed, and at that point I couldn’t even predict how I’d feel the next day. If the steroids and the asthma weren’t in the picture, things would have looked very different. I’d have spent more time studying because I’d have been able to focus my energy on the exams ahead and not simply making it home.

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By 8:30 the next morning, I was an exhausted heap in the doctor’s office getting a quick assessment, told to keep doing what I was doing and taper off the steroids gradually down to 5 or 10 milligrams [which I had every intention of doing anyways]. My emotions were almost more screwed up than my lungs at this point [thank you prednisone for both], and I found myself somewhat tearfully accepting the instructions to go get a doctors’ note so I could go home and recover and not go to school and write an exam.  Monday I bumped back up to 40 mg of prednisone because I was feeling worse than I had on Sunday thanks to the crazy travel day, then tore it down for the rest of the week eager to get off of the shit.

At this point, it seemed like an unfair toss-up. I could not breathe well and feel like shit and function, or I could breathe well and feel like shit from the prednisone and not function. Breathing, obviously, won out, and with a lot of snacks and patience towards myself and the emotional side effects [read: randomly tearing up in social psychology, the cafeteria and the university bathroom? Yeah, did that.]. I had intended to to be at work last Tuesday, I was back this past Tuesday. I am now those statistics about missed work days due to asthma. In the last three years prior to this, I had missed two days of work because of asthma [or, being sick in general, made worse by the asthma]. This in part was due to the asthma, in part due to the steroid side-effects, and in part that prednisone screws up your immunity so catching anything would not be a good scene. I had intention to show up to anatomy lab on Wednesday and ended up sleeping through it at home. I then planned to go to anatomy lab on Thursday but I got the time wrong and showed up as lab was ending, not starting so I missed making-up the quiz because I was sleeping on the floor of the university.  I think after waking up from my 45-minute nap for the second day in a row on Thursday was when i really realized how sick I must have been and how much of a beating my body was getting from this crazy exacerbation.

Things turned around, but not as rapidly as I anticipated to be fully better–as I write this over a week later, I’m still not fully better.  Sunday I went to the driving range. I am not a golfer, I do not claim to be a golfer, and I think I have never set foot on a driving range before. The first few rounds of balls went fine, but after about ten shots I was getting short of breath just hitting four or five balls over the edge and needing to take a break. Definitely not normal for me and not expected.  Steve and Morgan told me that it was likely I’d have some rebounding following the steroids, and Steve reminded me it might be awhile before I could exert myself without getting short of breath [he is always right, I don’t know why I doubted him this time] and things could take longer than anticipated to fully get back to my normal. Still, getting out legitimately for the first time since coming home [read: the only place I’ve been other than the indoor driving range in the last week has been the airport, the doctor, and school] was awesome.  Because the prednisone is such a powerful anti-inflammatory and is still having an effect on me, the inhalers are working extremely well at this point, so I hope that things stay like this for awhile.  I’m not even close to being able to work out again, but I’m hoping I can start working up to it by the end of next week.  I had to reschedule two exams and a lab quiz, so I’ve now dealt with the insanity that is truly mixing the asthma thing with the school thing–usually I am pretty good at making them non-interactive, save for the time I had a slight respiratory situation in Teaching Games for Understanding.

There’s no moral to this story. I learned that I always need to prepare for the worst and hope for the best [the hard way], I learned that even when I think things are going to be fine that asthma, or any other chronic disease, can still be extremely unpredictable even when I think I am in good control. I learned that as much as I hate the prednisone, and as much as I hate it even more now, sometimes it is a necessary evil. I learned that just because I usually only need a couple nebs to turn something around doesn’t mean that is always the case, especially going somewhere I haven’t been before and being three thousand kilometers away from home and my asthma care team. I learned that as much as I hate them sometimes, the nebulizer and the prednisone are powerful tools in my arsenal–underscoring the importance of bringing them with me when I travel. I’ve carried prednisone when I travel for a couple years, but it’s never been necessary but I am so, so thankful I had it or else I would have been completely miserable.

And I learned that, including my friends and even my instructors and profs at school (two of whom who simply rescheduled my tests/quizzes without even looking at my doctors note) I have, as I’ve said before, a bunch of really awesome people in my life who will stand by me through the good and bad. Special thanks to Kim for being awesome, supportive and making me feel totally normal through it all, to Carly for sharing in the understanding of being “‘roided out”, to Morgan for her advice, my boss for being amazingly understanding about the whole thing [and turning the tides and basically telling me I needed to not come in last Friday] . . .  and finally, to Epic Steve for being my personal respiratory therapist while in California–I have no idea what I would have done without him checking in with me throughout the days I was at Stanford, helping me figure out what to do next, and sticking with me through the whole crazy experience.

And asthma or not . . . I wouldn’t trade that, wouldn’t trade those beautiful people, for the world.

RT actually stands for Rockstar Therapist–and other respiratory therapy lessons from a badassmatic’s perspective

Come visit me at the Respiratory Learning blog!  Jessica graciously asked me to share some patient perspective in her community of Respiratory Therapists and RT students, and it is a total honour to be able to share my story to the people in this amazing profession.  Thanks Jessica!

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I have the tendency to often say “____. That’s my favourite thing!” In reality, I have a lot of favourite things. Whereas many people enjoy the exploration and destination parts of travel, I enjoy the travel part of travel just as much. Airplanes. That’s my favourite thing! Airports. That’s my favourite thing! And . . . Helping to empower people with asthma. That’s my favourite thing! This weekend, many of my favourite things combined into an experience unlike any I have had the privilege and honour to be a part of, and helping to be a part of something that will hopefully grow bigger than we had ever dreamed, all with the hopes of creating a healthier country. Saturday kicked off the World Congress of Asthma, where the Asthma Society of Canada [ASC] chose to host the five-year meeting of the National Asthma Patient Alliance [NAPA] Executive Committee. I have been a part of this group for a little under a year, and being a part of the amazing things going on at the ASC has been amazing.

Early Saturday morning, my [amazing] aunt drove me to the airport at 4:30 AM to catch a flight to Toronto. From Toronto, we made the shorter jaunt to Quebec City, and began the immersion into the unique culture of Quebec City. I have never been to Europe, but the Old City of Quebec had an amazing vibe to it, and is what I imagine certain places in Europe might be like [I’ll make that conclusion once I get to Europe]. Following checking into the hotel, my travel companion and fellow NAPA exec member, Cathy, and I grabbed lunch on a patio, where a man playing the accordion stood across the corridor from us (and, while not very French, I ate some of the best pizza I have ever had).

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We wandered the Old City for awhile. Cathy is an avid traveller, and a teacher, so she was an excellent tour guide for my first venture into the province of Quebec. We climbed I-am-not-kidding twenty-six-or-something flights of stairs (there was some audible dyspnea going on. Two prairie-dwellers with asthma trekking up the hills and stairs in Quebec is definitely a sight to see, and we made more than a few jokes at our own expense!)

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(The Frontenac)

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A couple and their wedding photographers. I think we were in the background of a bunch of their pictures.

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And . . . the reason I am here:

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We returned to the hotel late-afternoon to retrieve our bags from the desk and move into our rooms. I had been telling people to come to Quebec with me, and in reality . . .

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. . . they could have! [The funny thing about this, is while I was super impressed to have a more asthma-friendly uncarpeted room, and that they are available, I actually woke up because of my asthma that night. Ultimate in irony being at an asthma conference and representing for the Asthma Society, right?]

We took some time to get ready after our epic stair-climbing/hill-trekking/Quebec exploring, and then headed to the World Congress on Asthma.

World Congress of Asthma ID tag

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We spent some time in the exhibit area, which was my favourite part about my time at the Congress.  It was very cool to be able to talk with some of the people who are on the teams creating products and medications that keep me healthy.

It’s funny, I kept super-enthusiastically walking up to these booths. One of them, NIOX, featured devices to measure FeNO [fractional exhaled nitric oxide, which is an indicator of airway inflammation] and I walked up, listened to her for about 30 seconds and said “Can you test my FeNO?”. I’m kind of excited about these sorts of things if you can’t tell [Mine was 8, which is fantastic, and means the inhaled steroids I’m taking are rocking at doing their job! Maybe I’m cured?].  The drawback to FeNO, is that the tests are expensive, and this is likely why I have never had a FeNO test done. The meter, which is exhaled into slowly for about ten seconds [complete with a visual prompt to blow a hot air balloon across a canyon without moving it outside the set of lines on a computer screen attached to the device, is $3000, and each testing mouthpiece is $15. However, they are attempting to get home FeNO testing accessible with this, or a similar, device, much as peak flow testing is currently used as a self-monitoring system. I suppose though, that before getting home FeNO accessible, there needs to be an increased focus on making FeNO testing accessible in clinic.  But really, how can you not love that happy little cloud in the FeNO machine?

After getting our FeNO tested, I scored a Canadian Network for Respiratory Care stainless steel water bottle from an unmanned booth (I wanted to talk to the CNRC people!), we headed out of the exhibit area to meet with the rest of the the group who was travelling on behalf of the Asthma Society of Canada. At this point, I was able to shake the hands and see the faces belonging to the names and voices on the couple of conference calls I’ve been able to make it to.

(Photo contributed by Noah at the Asthma Society of Canada)

In addition to meeting the other Executive Committee members, I also met some of the ASC staff for the first time, Rob Oliphant (ASC CEO), Noah and Darren. My highlight here was finally meeting Rob, who was my first contact at the ASC when he was working there as the NAPA coordinator, he was also the one who recruited me to the Executive at the end of last August. I also was stoked to meet Bill Swan (I believe I had a few twitter conversations with him in the past), our co-chair for the executive, and works in health economics. We also occasionally finished one another’s sentences at dinner.  After introductions, we headed into the opening lecture by Sharon Straus on Knowledge Translation.

Following the lectures, we returned to the exhibit hall for the reception where we all seem to have missed the food (for the drinking crowd, though, we still made the open bar. Like I said to Rob and a couple others, “I’m boring. Don’t drink, don’t smoke, don’t do drugs, don’t eat meat . . .”, which lead to Rob and I having a discussion about the overconsumption of meat products in the average North American lifestyle. Verdict: I’m probably healthier this way (and obviously so on the smoking and drugs bit ;)).

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I then had the coolest experience. I walked up to the Trudell Medical table to say hi and see what their current pitch was, if there was anything new in the product lineup, etc. Trudell is awesome, and a couple weeks ago they sent me a huge box of accessories for inhalers and AeroChambers that I can give to kids in the groups I speak to after I sent them an e-mail about how I strongly believe that they need to work on marketing to adolescents and young adults, because we are the population that are missing the boat on increasing our aerosol medication delivery by not using an AeroChamber [Fact: spacing devices can make the medication 110% more effective because of increased deposition within the lungs and not, for example, at the back of the throat.] Part of my e-mail included some blog links and a goofy request for a purple AeroChamber (they have pink, but not purple). So, the first thing I said was “I have the pink one!” and mentioned that Trudell had just sent me a box of accessory stuff, and both people at the table simultaneously said “You’re the purple AeroChamber girl!” I just kind of blinked and burst out laughing and told them I was. I felt freaking asthma-world famous!

After this, however, the woman got to the subject of “How Old Is Your AeroChamber?” Answer: too old. Realistically, I thought buying a new AeroChamber every year was kind of a scam by the spacer-making companies. In Canada, the AeroChamber with mouthpiece costs $35 a pop. For a plastic tube with a valve. It turns out, even if you wash it weekly like you are supposed to (truth: I don’t know the last time I washed my AeroChamber. Gross.) She magically extracted me another pink AeroChamber from under the table. I chatted with them awhile longer, and then asked if I could have a new blue one, too, which she also magically extracted from under the table for me. As depicted to the right, the pink AeroChamber is marketed towards kids–obviously this did not stop me from buying my previous pink one. Like I’ve said before, if I have to live with an incurable disease, I might as well make it a little bit more fun where I can.  My chat with the Trudell people saved me/Pharmacare $70.  Thanks Trudell!  (I’m still waiting to hear back from them if they’d like me to partner with them on increasing marketing and thus product use and thus increased medication delivery in adolescents and young adults as proposed alongside my purple AeroChamber request in my e-mail to them! :])

Okay, so after the Trudell people knew who I was, I saw the Air Quality Health Index people, talked to the folks at Alvesco who didn’t yet have any samples, and got a maple sugar candy from a booth across the exhibit hall. That is the absolute sweetest thing I had ever eaten. I definitely have a sweet tooth, but I had to contemplate between toughing out the sweetness or going to gracefully find a garbage (option 1 won, and I spent the next five mintues standing with the group by the Merck table trying to look sane while this candy probably singlehandedly destroyed my teeth. The candy was good for about the first minute, but then I just couldn’t take it anymore!).

We left the reception and paraded down the street to the diner where I had investigated the menu previously and practiced how to order vegetarian ravioli en Francais. It turned out we walked in and they asked if we wanted French or English menus, and proceeded to speak to us in English (unless we could speak French, which Erika did!) And then it turned out I got fondue [which was not bread to be dipped in cheese as anticipated, but actually like a square mozzarella stick with three types of cheese in it. Still excellent, however.  I chased the cheese and salad [which they threw in unexpectedly] with what Le Conchon Dingue boasted was The Best Sugar Pie in Town. I am unsure as I have had no other sugar pie in Quebec City, but it was awesome.  We had some great conversation around the table, however, Jason (who works with my mom) e-mailed me all the French I would need to know in 30 hours, except I couldn’t access it till I got home since the hotel WiFi chose to quit on me and I didn’t feel like dealing with it. I really could have used the information on how to ask for a fork a little bit earlier (which he legit included, this thing is awesome), since Rob dropped his and Bill didn’t get one for dessert! :] Instead, they just had to ask in English.

 

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Sunday morning, I got up bright and early at five-something and packed up my stuff, tried to find the meeting room, and checked my stuff at the desk and checked out of the hotel. I wandered across the street and up the hill to the Hilton to meet Dr. Sally Wenzel at 7 AM. Sally is a researcher with the Severe Asthma Research Program in Pittsburgh, and is one of the most renowned and respected pulmonologists in the world. We took to the streets and wandered until we found an open coffee shop/bakery, and had a great talk for over an hour. This was definitely the coolest experience of the trip [well, that and the Trudell people knowing who I was]. Sally has not only a ridiculous knowledge of the inner workings of asthma but also a deep understanding of the social/emotional aspects of this disease and how it not only affects our lungs (and the rest of our bodies), but sometimes the rest of our lives, too. Her understanding of this disease from all perspectives is amazing considering she doesn’t have asthma and doesn’t know what it feels like. However, despite the fact that she is so, so full of knowledge and working so hard to make things better for people with asthma, she also is so down-to-earth and sweet that even though I was sitting there talking with an extremely well known and respected research doctor, I totally just felt like I was out with one of my friends (except, my conversation with Sally was about asthma and smart things ;)).  After we finished coffee, I had to head back to the hotel for the day’s meetings and she had to head to the Congress . . . but not before we tried to get some random people in the Old City to get a picture of us!

Sally: Pardon? Pardon?

Girl in group: Um, we don’t speak French?

Me: Oh, neither do we.

Coffee with Sally was an awesome experience, and I am so, so honoured to have been able to meet with her while we were both in Quebec and to see her energy and passion for helping those of us who have asthma in person!

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When I arrived back at the hotel, everybody was gathered in the conference room waiting for breakfast. I skipped the eggs, gave the bacon to Darren from the ASC after his bacon-enthusiast-esque comments, and had some potatoes and toast [yay starches?] and fruit. After we ate, we set to work discussing the first five years of the existence of the National Asthma Patient Alliance, then where we’re headed, how to engage more people in the asthma community, and ultimately, how to encourage Canadians with asthma to live active, healthy lives.  A lot of the meeting was full of brainstorming, and as new programs and initiatives unveil, I will definitely begin sharing those thoughts. Right now it is really just a big jumble of thoughts and questions that need to be hashed out–but a LOT of really good ideas on both raising the profile of the ASC and NAPA to the people who need us, as well as engaging people with the ASC.  The Team Asthma.ca shirt Sally is holding in the above picture is an initiative to encourage people with asthma to become more physically active, and a lot of our discussion revolved around expanding the program beyond running and beyond those who are already physically active. This in itself is one of my passions, but to determine an intervention of that sort is definitely a time-consuming process. By no means is it impossible, but, like any other large-scale outreach project, requires funding and time.  I’d also like to shout to Rob who began the Team Asthma program while he was working at the ASC, because it is definitely my favourite NAPA program.

We were also joined by Antje Fink-Wagner from the Global Asthma and Allergy Patient Platform and learned about the work GAAPP does, including some very cool sport programs that partner developing and developed countries, help them grow healthier through sport, AND educate on asthma.

At this point in the picture, I had gotten cold so you can’t see my nice clothes as they are hiding under the hoodie. I can’t remember what we were talking about here. Photo credit goes to Noah from the ASC, and I totally stole it off their Twitter.

For a quick rundown, our sessions were as follows: NAPA at 5 – where were we going, and where did we get? Education and Advocacy – what are we doing well and what could we change? Increaseing Engagement – growing the National Asthma Patient Alliance through memberships to NAPA, Team Asthma.ca and Asthma Ambassadors, and how to make these programs more accessible, as well as advocate-friendly delivery methods/materials. Moving Forward – plans for the next 5 years.

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(Rob and I. Note the kickass black tape. It is fairly evident the ASC is doing good things with money and not using a lot of it to keep signs attached to walls :])

Even though I am on this committee, it was amazing to hear all of the ideas people had used for advocating within pre-existing programs, like Ambassadors. Honestly, I was a part of the Ambassador pilot, but I had never thought of setting up a NAPA booth at different appropriate venues, like health fairs for example [truth: I didn’t know health fairs actually existed]. And what opened my eyes is that if I as a member of the executive am not thinking of these things at a higher level of involvement with the ASC, it is doubtful that an Ambassadors volunteer is thinking of them when they (like every other volunteer) have this thing called life. We discussed how advocacy opportunities have to be designed to allow the volunteer to have as much or little involvement as they can incorporate into their life, and how to go about this.

(Photo contributed by Noah at the Asthma Society of Canada)

The NAPA meeting brought up a ton of stories, thoughts, and advocacy ideas. It was awesome to be a part of that thought process, and see all of the Good Things that will be conjured up over the next five years. It is an amazing thing to be a part of this group, being representatives for the three million Canadians who live with asthma, and the family, friends and employers of these individuals who are affected by asthma.

After wrapping up the meeting, Cathy, Debbie and I went and wandered the Old City again for a bit.

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I bought a t-shirt [the only thing I bought in Quebec!] and ate some mango sorbet seeing as EVERYBODY was wandering the streets with gelato. I was not disappointed! :]

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My time in Quebec was whirlwind. Within an hour of buying this gelato, I’d consumed it, returned to the hotel, grabbed a taxi, and was at the airport.

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In Jean Lesage Airport, we ran into Keith from the executive committee (who is a respiratory therapy student! I <3 RTs!), whose plane to Montreal had been delayed. We switched our flight to the one he was on since we were ready to go (they run about a thousand flights between Quebec City and Montreal every day, so consequently, they are not full).

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Upon arrival in Montreal, we tried to switch our next flight with no luck. Win some/lose some. We instead wandered around trying to find legit food but settled for Tim Horton’s (so Canadian of us!). Cathy and I were finally split up for seats for our last flight. Being awake since 5 AM, I tried to sleep with no luck (my inflatable pillow was in my backpack that my plane neighbour had nicely stowed in the overhead bin for me. Read: I am short and I couldn’t get to it even if I tried). However, the looking-asleep with my earphones in meant the flight attendant didn’t offer me any more flight beverages, which was good as I was trying to avoid any more airplane apple juice. Three glasses in two days is quite enough, thanks AirCanada.  I essentially pretended to sleep/watched the flight map on TV all the way home. Who needs a movie when you can see the flight map?

I met so many amazing people and had a ton of awesome experiences while in Quebec. I came home feeling so full of good things and the desire to do so much more to engage people with asthma to keep reaching out to one another. To think that I was only there for 33 hours blows my mind, because I feel like I packed about a week’s worth of experiences into the 45 hours I was out of my hometown. Quebec was a place that i really didn’t have a ton of desire to visit before I went, but now that I have been, I definitely want to go back with more time to explore and feel the vibe of the city.  I had an amazing time, and feel both blessed and honoured to be a part of this amazing group of people who are doing serious good things.

Disclosure: Through sponsorship from Merck, the Asthma Society of Canada covered all of my expenses for the World Congress on Asthma and National Asthma Patient Alliance meetings in Quebec City, including ground transportation, meals, conference registration, accommodation and airfare. I am a member of the ASC’s NAPA Executive Committee, but am under no obligation to blog about my involvement with the ASC.

If you would like to help the Asthma Society of Canada be able to deliver the programs we began to formulate this weekend, as well as current and future ventures, please consider making a donation.

For the first time in two-plus years, I didn’t complete a 12 of 12. I only took six pictures. I was sick, and at the lake, and nothing really happened. I tried, but they didn’t happen. I was thinking I could cheat and post a bunch of random pictures, but in reality, I feel like it’s not legit if I didn’t take them on the 12th.

And when I say sick on Saturday, I mean full-frontal cold sick. Like absolutely ridiculous. I’ve had bad colds before. I’ve had long-lasting colds before. And I’ve had these with asthma before, but nothing quite like Saturday was.  This is The Plague: Friday night was the Leg Cramp from Hell, thanks bronchodilators leeching all the potassium from my muscles, in which both the posterior and anterior muscles in my right calf cramped up simultaneously.  Saturday was the coughing spasms, a continuation from Friday but incredibly intense and body-wracking. I did two doses of the inhaler and three nebs on Saturday to try to keep the cough to a minimum, and I really can’t stand to think what they’d have been like without the nebs.  Sick with asthma? For me, this is it. It’s countless hits of inhalers and multiple daily breathing treatments. It’s coughing so hard my ears pop. The coughing and the nebs are probably what lead to how my voice sounds:

Because you know what I’ve noticed? It’s all about better treatments. All the research. Never mind that we don’t know what causes this stupid disease, we know the root of it [inflammation and constriction of the muscles surrounding the airways in the lungs] and all research seems to care about is treating it. I benefit every single day from this treatment, and I am so grateful. But when one is to speak of advances in asthma treatment, there have realistically been very few in the recent past. even in the last 20 years, the medications are still much the same as they were in the 80s and 90s, with perhaps some modifications in how we are able to administer or dose our medications.  I’m not saying maximizing treatment options isn’t important. This affects my day-to-day life.

But I really want to see somebody trying to figure out the cause of this disease. How to interfere with that and stop this disease from developing to begin with. And once that’s found, figure out how to reverse the process so that we can cure this thing. It’s not about scientifically bunk treatments like bronchial thermoplasty [because surely burning the inside tissues of the lungs down works to affect the muscle on the outside from constricting, which is the bulk of the significant problem aside from inflammation in more severe asthma], or about the inhalers, or whatever “miracle cure” herb you’re trying to shove down my throat. I’m not into that. I want someone to figure out the pathophysiology and cure me, dang it. I don’t mention the word cure often because it’s too big to even think about. But I want one.

And when better to express my wanting people to actually care about a cure for asthma than asthma awareness month?

Because somewhere along the line, we have to stop settling for “good enough” and start reaching for “gone forever”.

First, there will be more road trip pictures eventually. But because I do things non-sequentially, we’re gonna roll on.

The mirror mantra for this week [because, dang it, I forgot to leave a mantra for the housekeeping staff in Watrous, SK last Monday]:

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The above mirror mantra may have to be a permanent addition to my bathroom, unless my mom gets rid of it like she has some other ones after a few weeks [she actually is responding rather positively to the mantras. Win!]. Once again, thanks to Jay for that piece of focus, and Dia for being my teammate in the crazy journey of asthma, perspective, #kinwin and keeping me accountable to it all.

Today is World Asthma Day.

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[Good picture there, right? #sarcasm. You get the deodorant and the ID bracelet and some med boxes.

Also the intended World Asthma Day tree tee I designed a couple years ago.]

My Facebook status, Facebook page status and earlier tweets today have been variations on this same theme:

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Okay, so I can’t go down on my own encouragement to kick ass and get active. Because “k-i-c-k-a-s-s, that’s the way we spell success”! [Thank you Giant by Matthew Good].

Really, the only ass I am kicking, or plan to kick, is my asthma’s [and my own].  I am pretty sure I picked something up on the road and am getting sick, because the three day mild sore throat has gone but turned into some increased sinus issues, dyspnea and coughing. Obviously the asthma finds the need to make itself known on World Asthma Day.

So what do I do? Well, my lungs feel like shit anyway, so might as well go take some meds and do a breathing treatment and give the neb an “eff you, asthma” finger for some perspective, strap the Garmin on it and ride that new bike, right?

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If the right answer today was to sit around because of the asthma . . . I’d rather be wrong. [The professionals would say I’m wrong. I’m not practicing what I preach either]. Come on, what is more appropriate than riding the bike called INSPIRE on World Asthma Day with the mantra of Being Intentional? Answer: not a lot.

So . . . I was intentional at kicking my own ass. Good enough, right? Also why is it not possible to not look like a total dork when protecting my brain? [The other part of my helmet is pink with flowers, but of course you can’t see the awesome half, right?].

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Representing for the Asthma Society of Canada.

So I got out there for my first bike ride in . . . years. [I am not very good at riding straight again yet. I can’t do sharp turns. Also when I met up with a lady with a stroller on the sidewalk I totally just pushed my bike along so as to not, you know, ride into them.]

Was it coughtastic and breathless? Yep. Will I pay for it later? Probably. Am I exhausted? Totally. Do I wanna go out there again? You bet.

Was it worth it? You know it.

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World Asthma Day or not, “We breathe it in, the highs and lows.” [Needle and Haystack Life, Switchfoot].

The goal? Do Good Things. Make a person or two think differently. Kick my own ass. And keep on doing it. And the disease? Kick it even harder.

Having chronic disease isn’t a choice. Perspective? It is. What I’m going to continue in regard to the asthma. I’ve made those choices:

Owning it. Being intentional.