A year ago today

I surfaced at work after being gone for over a week because I couldn’t move. I’d been getting sicker and sicker for months and I couldn’t keep up anymore.

I went back to school to start Spring term, and right before class got a call from my doctor’s office telling me I needed to go to the ER because my hemoglobin was 54.

Today marks a year since my first blood transfusion of 2013—three units from amazing donors that kept me alive, to be followed by another seven in the next four months.

it’s been a bombs and guns and fire kind of season
oh, i need a reason for all of my bleeding tonight.
i’m going to break it out, i’m going to make a scene if i’m right

Day before I got sent to the ER. Note that there’s basically no colour in my face/lips. [I felt like I had energy, but in reality my body probably had just adjusted to being super depleted of hemoglobin that I was able to sit up again.]

A year ago yesterday.

 

World Asthma Day 2013 [May 7th] 365 days ago today.

About 36 hours later, after three units of blood and a bunch of saline.

(And the friggen Lasix. I still don’t understand this combination of saline and Lasix.)

Yesterday.

let the revival rattle me
and open my eyes
it’s so good.
revival, the rocket summer

And today—365 days later.

World Asthma Day 2014. Wearing the same t-shirt I got my mom to bring to the hospital before heading to work early in the morning.

Donald, Mike, Sam and I gave out over a hundred Asthma Society of Canada resources for World Asthma Day.

…Then went to Wal-Mart with the intention of playing Marco Polo. Because that’s badass, right?

I thought about where I was this time last year today—purposefully at some times, fleetingly at others.

Thankful that it won’t be every year that these two days are the same day so I can reflect on each for its own reason. Thankful for the people who choose to spend their time with me—the people who stick by me.

Simply: thankful I’m still alive.

May is Asthma Awareness Month–and this coming Tuesday is World Asthma Day.  After spending a couple days together in the SF Bay Area last week, Steve and I got our networks to send out some questions, and did a very unstructured Q&A videocast to hopefully get some light shed on asthma, our thoughts, and hopefully teach some people a few new things about this disease.

To wrap up Asthma Awareness Month, I thought it would be interesting to vlog a day with asthma to give an idea of what things can be like. Though I’ve been sharing guest posts from my friends with asthma, they capture the big picture but not the finer details of the day to day intricacies of living with a chronic disease.

Asthma, though, can look immensely different from day to day and from person to person. I am extremely thankful for the willingness of some of my friends to rise up and join me in sharing what a day in their lives with asthma looks like (and, on very short notice)–and of course, if anybody else wants to contribute, by all means, please fire a video off to me!

Super special thanks to Steve for getting a video off to me on really short notice!

Steve and I filmed these in an overlapping block of time, so we really had no idea what the other person was doing. However, our perspectives really overlap in certain parts of these videos, which just blew my mind. Steve has really severe asthma, but if you know any part of his story, you’ll know that he truly rolls with it, does what he has to, and lives a really vibrant and active life regardless of his asthma.

However, despite “asthma” sharing a common name, and Steve and I having common passions . . . you will see that Steve’s day is dramatically different from mine.

(By the way, I’m convinced Steve is a pro video blogger in disguise. And I think he needs to do this more often. Also, Steve, I like your hoodie.)

Asthma: it’s a six letter catch-all.

It can have a host of symptoms from coughing, to shortness of breath, to wheezing, to chest tightness.

It can be asymptomatic, or relatively mild, or severe enough to require treatment in the intensive care unit.

It can be treated with inhalers and nebs, pills and injections.

It can affect somebody for two minutes a year, or twenty four hours a day.

It can be anything but simple, and there is no such thing as typical.

But most importantly . . .

It can be owned,

it can be lived with

. . . and it can be thrived with.

Through this magic thing called the Internet, I’ve had the joy of being able to meet a plethora of amazing people, a number which amplified massively in the last few months. Over the last week, I got to spend 9 hours with one of my favourite people on the planet. My friend Steve–also known as Epic Steve or Breathin’ Stephen–was in Winnipeg en route up north to embark on a wicked adventure: a polar bear tour in Churchill, Manitoba [had I figured early enough that I probably would have been able to cram this in with school, I would have totally gone with him!].  His blog post is absolutely incredible–lots of amazing pictures and video clips, and while he’s still in the process of adding to it, it is a must read.

I barely gave Steve time to step out into the cold before I showed up at his hotel on Monday afternoon, where we immediately began talking non-stop and trekked outside to get him a little more oriented to the Land of Canada–at this point, he took a picture of a snow pile, which totally cracked me up–I suppose that is a task that a Californian has to do on his first trip to Canada. We wandered while weighing out our food options and ended up getting on a bus, and then getting off at the Subway [which, turns out is probably the sketchiest Subway in the city from what I was told later. Ah, Winnipeg.]

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Unlike me, Steve can actually properly tie a scarf. Seriously, look how well he pulls off being a Canadian, right down to the name Stephen Gaudet! :]

As Steve has said before “We couldn’t be more different, but it seems to work.” And, that it does! We’ve both got a ridiculous amount of energy, and despite all the “different”, have so much more in common than I think we’d even realized when we connected through our blogs three-and-a-half years ago. We headed back to his hotel and talked non-stop for another couple hours about everything under the sun. (To underscore our combined inability to stop talking, my grandparents picked me up and we walked into the lobby and my grandma greeted us with “All I can hear from down the hall is jabber jabber jabber jabber jabber! Hello Stephen!”  See also: my grandma is awesome.)  Oh, also he stopped and made fun of me every time I said “out” or “about”, and then I tried to figure out what makes how Canadians say them so amusing to non-Canadians and I still have no freaking Idea, eh?

I met Steve downtown at the bus stop the next morning after he had apparently hit it off with the bus driver who hailed from England, and got a guided tour of the bus route and chatted it up about Churchill (the travel experiences this man has are full of amazing, I tell you).

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Photo credit to Steve.

His Picasa caption says “Partners in Crime”. This dude and I are out to change the world.  I think this is my new favourite picture of us–actually the Twin Peaks one still wins I think. Because awesome.

My mom picked us up and drove us to the train station [and thus finally met Steve after all of my talking!] where we proceeded to be touristy and take pictures.

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At this point, I was getting more and more tempted to just get on that train–forget packing and whatnot!  After we checked Steve’s bags, we went to The Forks, which is essentially the only thing to do in Winnipeg [okay, maybe the zoo, except not so much in November].

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I think this lead to this picture.

Like a kid in a candy . . . Oh wait, it was a candy store. Using Canadian money and all that. [Did you note that the $5 bills have hockey players on them? We don’t miss a beat, eh?]

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[I just noticed the big open barrel of Jelly Bellies. I’m not sure of my feelings on the open-ness of it all ;)]

About this time a) Steve told me we had to leave the market so he’d stop buying things, and b) my grandma chased us down because she made Steve cookies for the train (see also: my grandma is awesome.)  Then we went to play in Explore Manitoba Centre.

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Except if we were in the snow, you don’t get much more Manitoba than this.  We’re like an MTS commercial.

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He’s getting amped, while I’m taking pictures of him taking pictures again.

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[If you change your focus from the bear to his shoes, I would like to bring to your attention that as we were galavanting through the snow on Monday night he was making fun of the fact that I was wearing running shoes. Ahem, rockstar?]

Okay, time to get goofy:

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I think it was at exactly this point that it was determined that Steve and I need to travel together, because it would be pure amazing. And out of control all the time. :] Can you guess who’s idea this was?

Okay back to the snow!

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[Photo credit to Steve]

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After this point we simmered down (a bit, I’m unsure either of us ever simmer down too much), and went and hung out in the train station and talked for probably another hour before his train left. Even all these hours adding up are never enough time! And, trust me, Steve, I know you made that comment about how I’m always playing hooky whenever I see you, but I’m pretty sure I learned more, and more useful things, hanging out with you then I would have being at school.

Here’s a blurry BlackBerry photo in the legit train waiting area:

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Steve: Why do you look so pale and I look like I have a tan?

Me: Because you’re from California, and I’m from . . . here.

And from there [after we people-watched for awhile and talked non-stop as has become our pattern] he went off to the Great[er] White[r] North!

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[Also it has just occurred to me that I need to fix the situation that I do not own a plaid scarf. Whoa.]

On Sunday, I met up with Steve at his hotel to see him off at the airport [and my grandma sent more cookies–Steve makes friends everywhere, as evidenced by his Churchill adventure post!] at 8:30 (on the dot!). He gave me a sneak peek at some of the beautiful polar bear video footage, and told me about the awesome experience of his flight back to Winnipeg, and more Churchill stories.  After awhile we headed over to the airport, where the United people were not at their desk and thus had to feel the wrath of my tweeting :]

Hey @united. Get some people at your counter at YWG, you're breaking into coffee time.

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The @united people have arrived but they're not actually doing anything. Only one open kiosk and somebody went for a bathroom break.

(The United people were all kind of milling about and not being productive at the time of the last tweet. We got all stoked that somebody was coming, and as if she sensed our excitement decided she was going to fake us out and left to pee before she started actually working. False hope!)

As Steve learned, I am also unable to navigate my own airport [okay in reality I think he learned I am not really able to navigate much of anywhere, like when I made a wrong turn getting from the train station to the Forks Market. Honestly, they are across the parking lot]. And we found the Starbucks too late. Oh well, guess we’ll have to caffeinate the Starbucks way next time! However, had we found the Starbucks we would have a) spent more money and b) not had Steve’s first Tim Horton’s experience, so there is that. :]

We spent some time, to steal Steve’s phrase from his blog post, “plotting out our next adventure” over coffee, which will surely be wild if our last two adventures have been any indication!  Except, eventually we’ll have to take on a new geographic area for both of us :]. And . . . before we knew it we were sitting on the floor outside security where Steve was filling out a Customs card and I was pimping his inhaler with checkered duct tape [Hey, MTV — pimp my inhaler? You dig?] and he headed off back to the US.

Also, please tell Steve that he does not look stoned in this picture :].

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An unlikely pair? You know it. We may have a plethora of differences, but we also totally click, and sometimes it still blows my mind, even after spending 14.5 hours with Steve in the last couple months (after ‘knowing’ him three years!). As I’ve said before “We became friends because of asthma, we stayed friends because of awesome.” and that certainly holds true here.  Steve has helped me navigate a myraid of situations, sparked me into new things [have I mentioned here that the fact that I actually get some degree of physical activity, have done some races, and therefore became a kinesiology major is in part his fault? Because it is. If that doesn’t say good influence, I don’t know what does!], has ultimately taught me basically all the smart things I know about asthma (and, might I add, basically figured out how to try getting my asthma into control from 3,000 kilometers away). . . and in the process of all that goodness, we’ve had hundreds of good talks (also a lot of ridiculous!) and both good and not-so-good experiences along the way. And, certainly with the friendship we have now, all that, all that has lead to these crazy shared experiences, cannot be “coincidence”. (Well, I don’t believe in coincidence, but that’s beside the point).

Steve, it was awesome seeing you again. Let’s figure out a way to get our paths to cross again soon, yes? I think we’ve got some world-changing trouble to make. Or, you know, simply a lot of good times to have!  (And ice cream, coffee related drinks, touristy picture taking and YouTube travel documentaries!)

Now the rest of you, if you haven’t yet, go read about the bears on Steve’s blog!

Last weekend, I hung out with a really special group of people. My friend Mike, blogging at My Diabetic Heart, asked me to guest blog awhile back, and we pinpointed that my MDH guest post would be an awesome place to write about some of my thoughts about hanging with a few of the amazing people of the Diabetes Online Community, or DOC.

Head on over to check out my guest post – Feeling the Love of the DOC.

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That is one fiiiine looking crew!

Back row left to right: Kim, Dana, Chris and Sarah

Front row: Liz, me, Cherise, Debra and Christina

Photo credit: Christina