world asthma day 2016: hello, asthma.net

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. 

12 of 12: april 2016

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1:12 am | kitchen. Felt like making something around 11:45. Still making something.

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1:19 am | kitchen. And this is where I stop for the night. Pleasantly surprised with how the hair is coming. (I’m responding to the “draw a song” art journal prompt I saw online, using Feels Like Forever by Lacey Sturm.)

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2:00 am | bedroom. Tweet – “1:58 am seems like a good time to buy the @Smiling_Mind book right? Yup. Now to use the app and go to sleep.”
I did not end up using the app before I went to sleep, but I did almost also buy the November Project book… I restrained myself.

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10:17 am | Perkins. Sam and I went to Perkins to plan practice, because my Starbucks card reload failed during the upgrade to #Crybucks Rewards. Starbucks is refunding it, but why would I go to Starbucks with it not resolved? So, Perkins. And these delightful crepe things filled with strawberries and cream cheese.

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12:23 pm | Kitchen. I should really just start saying office instead of kitchen. I started the process of checking off many things from my to-do list with “file taxes”. As you may recall, they’ve been done since March 12… Submitted.

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3:39 pm | Kitchen. After filing my taxes and scheduling my tooth extraction (being a grown up is AWESOME. Like I wrote the other day, I’ve got a cavity in a wisdom tooth so it gets to get pulled out. Which is better than getting it filled, really.) I got a 20 minute dance workout on. Except I did it wrong and ended with a peak heart rate… Poor music choices (actually due to the song linked above)…
Anyways, yeah, I then did another grown up activity and did some work, which involved writing a blog post about why warming up and cooling down is important, and how despite having a degree in kinesiology I’m not smart sometimes.

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6:54 pm | Special O. Sometimes, we play games like Capture the Chicken that the parents are more intense about it than the kids (it does get the athletes stoked though..!). Yes, this guy is also my sport medicine doctor. 😉

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 9:31 pm | kitchen. 4 things checked off the month’s to-do list today.

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9:49 pm | kitchen. This is my buddy Guide Dog Murray, aka Steve’s guide dog. You should vote for him in the Guide Dogs for the Blind photo contest. He’s raised $25 so far, because he’s cute (and because humans are nice).

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11:00 pm | kitchen. I had a bath, and then put on clean socks… except I have no idea why there is red on this clean sock or what it is… Obviously I was like whatever and did not like, put other socks on or anything. Maybe it’s from that string anklet I’ve got on, but I’ve had that on for, like, months.

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11:34 pm | kitchen. Classic. Cookies and milk. (There was another cookie but you don’t expect me to, like, save them both to take a picture of, right?)

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12:38 am | kitchen. Technically no longer the 12th. But still within 24 hours and back to creating stuff. Because it’s like, therapeutic or something.

soundtracking 2015 – march through july.

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… 

12 of 12 – november 2015

I’m only a week late—here’s my 12 of 12 from November 12th, 2015!

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12:37 am – kitchen. Hello, reminder. Hello, November 12th. [I often ignore these alerts for HOURS…]

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10:29 am – bedroom. It’s getting to be that time of year… Mittens.

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11:23 am – bus. My buddy, Murray, Steve’s guide dog. Hard at work!

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12:11 pm – bronuts.
 Boston creme, aka Edgar? Yes, please!

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12:20 pm – bronuts. One of the bros brought Murray water :].

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12:28 pm – King Street. For my friend Riki: yes, Bronuts is wheelchair accessible!

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1:20 pm – mts centre. The boys (aka Steve and Gerry) and I went to Starbucks and it was very full, so we took our drinks and sat at the far end of the Tim Hortons in MTS Centre.

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3:30 pm – graham at donald. Waiting for my bus to go to work. This post with a graffiti-ed name tag was interesting to me.

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6:20 pm – respite. You mean you don’t make paper french fries at work?

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6:30 pm – respite. Apparently the five year old didn’t like some of my shading that got a bit out of control, so I made it better by making the offending french fry have ketchup on it. [I mean, also, when the little one found a freezie and we couldn’t find a second for the 5 year old, I convinced him that frozen bananas were the greatest thing ever… and won him over.]

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8:50 pm – kitchen. Went shopping on the way home. I’m doing NaNoJouMo (national nonstop [art] journal month], so, I have to give my inner [non-]artist some new tools.

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10:49 pm – kitchen. My first oil pastel creation in years. I think I had better pastels as a kid, actually…