a year ago today

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.

asthma awareness month: google hangout q&a livestream

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.

short stories: if you make a mistake, press star

I have too much to write that requires a lot of thought, and not enough time to write it all out. I’m rounding up guest bloggers to help me out, but while that solidifies, here’s a new series called Short Stories.

Short Stories will be quick anecdotes from my life in a given moment. No greater purpose, just random moments that may [or may not] be of interest.


If you make a mistake, press star

As I managed to break online prescription refills from Shoppers Drug Mart, I use the automated phone service instead.

(Yes, don’t ask me how I managed to break the online service. And the app. Or why I can get Concerta cheaper at Target.)

I have three medications on my counter needing to be refilled relatively soon: Qvar, Atrovent and Concerta, all neatly labeled with their respective “7 digit Rx number located in the left hand corner of your prescription label”.

I also have a pack of hormone pills with 3 active pills remaining [because I back-to-back those F’ers—since I don’t want to be on them but am for medical reasons, obviously I will use this to my advantage], but no respective label. I “press 1” as I walk to the kitchen to find a receipt with my history to grab the number. Punch it in.

“To request another refill, press 1. To hear when your refill will be ready and confirm your order, press 2.”

Press 1.

“Please enter the 7 digit Rx number located in the left [I DID NOT NEED TO PRESS 1!!!]. If you make a mistake, press star.”

I am pretty sure pressing star will not help me.

Glance down, next on the list– “Zenhale 200/5 – Ref: 1”: Input number.

Press 2.

 

I don’t need the Zenhale for 27 days. But hey, at least when they tell me it’ll take a week to get in despite promising they’d stock it, I won’t have to revert back to my backup stash of Symbicort I have now for this purpose.

It makes sense if you have chronic disease!

a tallygear custom: clip-on inhaler case!

I often sport products made by the awesome Ms. Donna Annese, the creator of Tallygear. Regardless of what kind of small items you’re needing to carry around with you, if Donna doesn’t have something to suit your needs on her site, she’ll think something up as quickly as you can ask for it! Donna launched Tallygear–named after her daughter, Tally–after creating the original Tummietote band: a fun way for Tally, who has type 1 diabetes, to carry her insulin pump and other necessities, but also allowing a lot of freedom. The tummietote band is comfortable, flexible, and most importantly, attached to me. For kids, but also other (disorganized?) adults like myself, the fact that I’m not putting my bag down anywhere means that I’m not forgetting it anywhere.

Unless I need a backpack, thanks to Donna, I basically never have to carry a bag anymore—for quick trips out of the house or workouts, I can stash my inhaler, keys, debit card(s), phone and whatever else into a tummietote band or belt and roll. For longer ventures, like field trips at work or if I need a bit more stuff with me, I LOVE the medical supply tote (formerly called the Hipster Pack)—I can fit multiple inhalers, an aerochamber, and several other small items inside, and barely notice it. To add to the fun, I also have several “super cool” headbands, and medical ID wristbands also made by Donna.

Several months ago (as you can tell, my blogging has been scarce—I intended to write this months ago!), Donna made the Dexcom G4 case. I commented on one of her posts that I’d love to see something similar to toss an inhaler (you know, for days where I need even less storage than the tummietote!) . . . and, she made it happen! I picked some fabric, and my wish was her command—I found not only a brightly coloured clip-on inhaler case, but a black one, in my mailbox a few weeks later

 

I love this thing. I usually keep it attached to a belt loop (however, tutus also have nifty little ribbon loops inside supposedly for hanging, but also likely useful for clipping-ness—in the above picture, I’m wearing black jeans under the tutu, and though you can’t see the belt loops, it’s attached to my jeans). The tutu method, however, also allows for the case to be attached and hidden underneath. In addition to my Ventolin inhaler, I usually have a bus ticket inside (or, I did until I got an iPhone, which is more convenient for storing bus tickets in the case of than the BlackBerry was), and occasionally a stray Concerta if I’m going to be out at noon when I take my midday dose). I also usually have a house key clipped to the carabiner (because that is mostly the only key in my life other than my work key). Contrary to the above picture, at this point I usually have it clipped at my side, and in that position I barely notice it.

Mostly, though? Regardless of the colour, it’s surprisingly inconspicuous! I work with kids, and either they’ve just learned that’s probably my inhaler, or they just don’t really notice it.

I’m banking on inconspicuous, though. Those kids LOVE my neon squares Hipster Pack—and I’ve even had random kids I don’t know tell me how cool it is. Well, girls anyways. I’d probably have to get some t-rexes or something* going on for the boys to exit their own little world. (*I just racked my mind for three minutes and can’t seem to determine what boys are into at present. Previous seasons it has been Deadmau5 and LMFAO and Minecraft, but I am apparently no longer with it.)

Thanks, Donna!  If you haven’t already, check out Tallygear to discover more fun ways to store your stuff—if you don’t see it, dream it up and get in touch with Donna—she’s amazing, and she’ll make it happen!

 

Disclosure: I received the inhaler cases, as well as other Tallygear products in the past from Donna for free. I was under no obligation to blog about the products, or provide a positive review. There’s a reason I keep going back, people: her stuff is quality, and I need more colours and designs! :]

haika clothing: justin’s asthma awareness story

Today, I’m happy to share a piece from Justin Castillo, founder of Haika Clothing Company. If you’ve spent some time here, you’ll know I’m a big fan of t-shirts, and even more-so when there’s a story behind the shirt. Today, a true testament to put in the Badassmatics file, Justin shares how he got started, how he refuses to let asthma hold him back from living an active life, and hopes the message within his clothing will help others with asthma live the same through provoking thought and healthier lifestyle choices (though, I can’t say I’d condone his act of leaving his rescue inhaler at home–keep that shit with ya, people, it’s important!).  Thanks, Justin!

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It all started in March 2013. 9 long months ago, but for me seemed to go by in a blink of an eye. I was reading an issue of Entrepreneur Magazine and learning about all these companies starting from nothing and seeing where they were headed. I thought to myself, “Why can’t I think of something?” I kept seeing all these clothing companies that would donate or give back to organizations and charities such as breast cancer, autism, the fight against hunger, etc. These are all great causes, don’t get me wrong, but it seemed like everyone was helping the same cause. Also, the shirts these companies would offer, just didn’t fit my style. All they would sell were message tees. For me, I like to wear active/streetwear clothes that fits the surf & skate demographic. My “Ah Ha” moment came when I realized why don’t I create a something that supports a cause I am passionate about and offers t-shirts that fits my sense of style. Thus, Haika was born!
Why asthma you ask? I have had it since childhood, so it made perfect sense. I searched all over the internet and couldn’t find a anyone that supported asthma, in terms of a clothing company. So, I combined my two passions: helping those with asthma, and, creating a clothing line that fits my sense of style. Instead of creating message tees, I wanted to create something where the message was already in the brand. Don’t let asthma take control of you. You must take control of it! I want people to do what they love, and not let anything get in the way of that. Whether is it asthma or not.
I’ve played competitive sports, such as baseball and football, throughout my whole life. Of course there were times where I would induce an asthma attack, but I didn’t want that to be an excuse of why I couldn’t continue to participate. I felt that those experiences made me stronger physically and, more importantly, mentally. In some sort of weird & twisted way, i’m glad to have asthma. In a sense of not to take things for granted.
I took it a step further and incorporated a more healthier style of living by exercising and eating properly. I found out that this has dramatically decreased the use of my inhaler and asthma attacks, as well as increasing my energy level. All I want to do now is get out and enjoy the outdoors. I still take my preventative inhaler two times twice a day, but I can leave the home comfortably without my fast acting inhaler. To know that you have it that well managed and under control is a big step and confidence builder for anyone who has asthma.
From idea to reality, I want to see Haika as a company and project, grow not only throughout the U.S, but worldwide. With help of awesome people like Kerri and Stephen we can spread this message and help millions of people with asthma by supporting research and study efforts. With each purchase, $5 is donated to an asthma organization or charity in our customers community. That way they can have a direct impact and feel great about what they are doing! Visit haikaclothing.com for more information.

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Beyond a potential conversation-starter, 20% of your purchase of a Haika Clothing t-shirt will go towards an asthma-related non-profit organization. If you’re working in the best interests of people with asthma and are interested in partnering with Justin, drop him an e-mail!