12 of 12 – august ’11!

On the 12th of each month, a bunch of bloggers from around the world take 12 pictures throughout the day.  Here are my pictures for August 12th, 2011!

8:33 am – bathroom. This is my new digital peak flow/FEV1 meter, it’s pretty sweet.  This thing basically shows how my silly asthmatic lungs are working at a given time.  It’s fancy.

See also — ziploc bags of junk I still haven’t unpacked from working at camp last week.

10:46 am – kitchen. Peanut butter and nutella sandwich.  Yes, for serious.  So yummy.  It’s like a Reese’s peanut butter cup in sandwich form.

11:53 am – the bay. This makeup counter was playing really weird techno/poppy music about makeup.  I was highly confused.  I kind of wish I took a video.

11:56 am – weird light things. Because yes, that is a location.  And yes these are lights.  They are known as the “weird light things” by the person in the next picture and I! :]

12:05 pm – downtown. OH MY GOODNESS!  IT IS BETHANY!!  Bethany writes a blog called Me With D, and we discovered awhile back that not only do we have the same ophthalmologist [and the same pedi ophthalmologist back in the day] we’re fairly often in rather close proximity to one another.  Anyway, it took several months but we finally met up on a 12 of 12 day!  Bethany is awesome — our wander was so much fun.  Except we kind of got distracted from taking pictures because of talking .

12:13 pm – memorial park. Wandering.  Taking pictures.  Feeling like tourists.  [We got slightly sprayed/misted by one of these fountains on our way back, it was awesome.]

12:27 pm – downtown. Oldschool prison. Creepy, but awesome.

12:50 pm – lawn at school. Ran into my cousin, Dean, as I texted him when Bethany and I split and he was at the hotdog cart nearby.  He is a nice cousin and bought me iced tea.

6:07 pm – kitchen. Dinner.  So good.

7:55 pm – shooters. Mini-golf!  My shoes are so match-y.

8:10 pm – shooters. HOLE IN ONE!

9:01 pm – perkins. Oh my goodness.  I have wanted this sundae for so long, but I always ended up at Perkins for actual meals and was too full after for dessert.  So awesome.

12 of 12 was created by Chad Darnell.  Check out his blog to see a list of all August 12 of 12s.  Thanks for allowing us to infiltrate your blog space for another year, Chad, and for dreaming up this great project!

world asthma day part two – my asthma story

A lot of things people learn about my asthma surprise them.  For the first, I was diagnosed as “maybe” having asthma three years ago on April 28th, 2008.  I was sixteen—that’s the first thing that shocks people.  I’d been experiencing symptoms since mid-February, which were diagnosed as bronchitis twice.

Did I mention I didn’t have a doctor?  That could be why I was diagnosed with bronchitis twice.  The first walk-in doctor at the end of February listened to my lungs for about 10 seconds and declared bronchitis and prescribed crappy antibiotics that made me sick [cephalexin], the second did a little more thorough examination and then also declared bronchitis, tossed some Advil and cough syrup samples at me along with a prescription for azithromycin.

So guess what?  It didn’t freaking go away.  I went back to second walk-in doctor who asked some more questions and said “It could be a mild asthma” [yes, a mild asthma. That could have just been his accent, though] and gave me three fills on a Ventolin inhaler [the blue inhaler that opens your airways within 5-10 minutes and lasts for about 4 hours], which I used three or four times a day for the next few months until I found my way into another doctor’s office in September with a quarter of an inhaler of Ventolin left in my possession.  I saw him, he seemed okay, his physical exam was a joke and he never even requested the PFTs (pulmonary function tests) he said he’d ordered.

Fortunately, my current primary care doctor’s office phoned around this time saying they were able to take me as a patient.  I started on control medicine [Flovent—an inhaler that works on inflammation in the lungs] and got more Ventolin on October 31st at my second appointment with my current primary doctor.  Two visits later, things were only a little better, so she added Singulair [an anti-leukotriene pill—leukotrienes are like really hardcore histamine, sort of] to my treatment.  In June ‘09, I was put on Symbicort instead of FloVent which helped a lot more—Symbicort has a long-acting bronchodilator, kinda like Ventolin, and lasts for 12 hours PLUS an inhaled corticosteroid like FloVent (Pulmicort).

In the last three years, we’ve changed my medications a lot.  Advair lasted three weeks and made me pretty sick.  I’ve been put on Atrovent, a different type of bronchodilator called an anticholinergic, that I take 2-4 times a day.  My allergist and I have now tried lowering my Symbicort dose by supplementing with additional Pulmicort and then taking me off the Pulmicort and adding Qvar, which is another inhaled corticosteroid.  The allergist and I also ditched Singulair completely, which is awesome.  It wasn’t helping, apparently.

I now take anywhere from 10 to over 22 hits off of different inhalers every day.  I have a nebulizer machine for when my lungs really start acting up.  And you know what?  Yeah, that shocks people too.  I still use my rescue inhaler more often than the asthma control guidelines say is acceptable. 

But, this just touches the surface of what some of my friends with asthma do to keep their breathing in check every day.

I have primarily non-allergic asthma, but I have a pulmonologist, an allergist and a second allergist and research study doctor behind me—as well as my primary doctor.  I’ve also been lucky enough to be in contact with rockstar respiratory therapists and the amazing Dr. Sally Wenzel at the University of Pittsburgh’s Severe Asthma Research Program.  [Seriously, how cool is it that she is like, THE BEST asthma doctor in the world and one of the most prominent researchers in asthma, yet she still answers e-mails from everyday people like me?

The medicine stuff only scratches the surface.  Asthma affects some of the decisions I make and how I do things.  I try my hardest not to affect WHAT I do, only HOW I do them!

For example, at this point, I still get really short of breath really quickly when I try to run.  It’s not that I’m in bad shape, it’s just that it freaks my lungs out.  One time I crashed on the bleachers after the 12 minute run in gym class and didn’t get to play ringette, it was lame.  So I walk—I try to walk fast.  I go to the gym.  I play hockey with my friends in the winter.  I work around it all with an inhaler in my pocket.  My friend Steve (or his superhero name Breathinstephen) has taught me a ton (if not most) of what I know not only about digging deeper into asthma and working out with asthma, but also educating and advocating for asthma awareness.

So what do I do?  I’m an Asthma Ambassador with the Asthma Society of Canada and talk to people where they’re at.  I tweet about asthma.  I teach asthma education classes to high school students a couple times a year (we watch Arthur. You know you wish you were there).  I wear my Team Asthma.ca shirt [heck yes. I love the ASC].  I try not to push people off when they ask about my medical bracelet (yes, I’m self-conscious about it).

And I tell my story, like I’m doing now.

One in ten Canadians have asthma.  Yet, there are still a lot of misconceptions.  Asthma is bigger than a blue inhaler.  But asthma should never, EVER stop you from reaching your goals, even if it changes how you achieve them.

world asthma day 2011

If there’s one day a year to recognize what we have contributed to both our online and offline communities of people living with asthma, it’s today.  If there’s one day to move toward what you want to see different, what you want to tell someone about asthma, to start a movement that continues throughout the year, it’s today.

And while the rest of the world may—may—see asthma highlighted in the media one day a year, those of us who live with asthma know that it can and for many of us IS, every single day.  We know that it involves more than the blue inhaler and more than seeing your doctor once in awhile.  This shit is every single day.

This coming year, I hope to be more and more involved in advocacy in my own community.  I hope to talk to more people, meet more people, I hope to share more.

This coming year, I hope that things change.  I hope that people realize that having ANY problems breathing is not okay.  I hope that more people realize that if we want anything TO change, WE have to be the change.  We can’t change how our lungs work, but we change and educate people on their perceptions of people with asthma of any kind – intermittent to severe.

I have friends on every part of the asthma spectrum—because nobody’s asthma is really the same, it should be considered a spectrum disease; that needs to be realized too. 

To depict this–my friend Elisheva is committed to managing her asthma and being active, and has reached a point in her life where she has basically mastered controlling her asthma on as-needed Symbicort and Ventolin.  She keeps on top of her asthma when it DOES flare up so that she doesn’t break her neb treatment free streak.  She’s also the master of the World Asthma Day party; gathering her friends with asthma at her home in Israel to have some fun on World Asthma Day (and she makes cool cakes!).

And on the opposite side of the spectrum, meet my friend Steve from California.  Steve works incredibly hard day-in and day-out to keep on top of his asthma.  He takes medication multiple times a day, is involved in advocacy and research studies, helps other asthma patients with his experience both as a patient himself and a Respiratory Therapist . . . and still continuously has asthma symptoms.  Does it stop him though?  Of course not.  Two weeks ago, Steve completed his third Boston Marathon.  And because asthma is a shitty, no-holds-barred disease, he’s spent the last week in the hospital because of his asthma.

And there are those of us somewhere in the middle.  Those of us who have very different stories, but still fight this stupid disease every day.  I take three or four medications specifically for my asthma every single day, amounting from anywhere from 12 to 20+ puffs of an inhaler every single day so that I feel okay.

What else can you do?

The easiest and MOST IMPORTANT thing you can do for World Asthma Day is to talk to somebody.  TELL them it’s World Asthma Day.  Share YOUR story.  Let them know that asthma is serious, that asthma awareness is important, and asthma is something we live with every single day.

Remember that WE can create change.  We may not all be researchers that can cure this disease someday, but we can support each other, share with each other, and advocate for each other.

#hawmc seven – one day.

I got off track.  Again.  Doing a blogging project during finals month is just silly I think.  I’m just gonna jump in when I can, I think.

To be honest, I don’t really have a “typical” day.  So I’m gonna try to do a typical-ish school day, since at least those have some sort of substance and sort-of structure.

7:05 am – Get up, put on glasses, stumble to bathroom, check peak flow, take Ventolin inhaler if I’m in the yellow zone.

7:10 – Get dressed.

7:20 – Take Atrovent, Symbicort and Qvar (usually in that order).  Brush hair between inhaler hits.  Brush teeth because that is important on inhaled steroids–and for other reasons .

8:00 – arrive at school, sit around and study, hopefully friends come visit me because it is boring if they don’t.

10:45 – MORNING SNACKYTIME.  Or what most people would call breakfast but it is not legit breakfast food usually. More like school cafeteria crap.

11:30 – class. [yes, this term was slacker Monday, Wednesday, Fridays, I only had one class]

12:20 pm – end class, bus home.

1:15 – Take atrovent if needed, eat lunch, check Twitter, deal with morning e-mails.

1:45 – Social media timez – twitter/fb/youtube or studyyy.

2:45 – Check peak flow, change for a walk, do a nebulizer treatment, stick earphones in ears, cellphone, iPod and inhaler in pocket and polish off hopefully at least 5K.

3:40 – Stretch.  Check post-walk peak flow.  Do a prophylactic neb treatment post-walk to head off any nasty delayed-flaring, tweet whilst doing said treatment, and plug the Garmin into the computer to synch it to GarminConnect and Dailymile.  I freaking love Dailymile, you should join me there.

3:50 – Probably realize the neb’s been spitting out nothing for five minutes and the treatment is done.  Take neb out of mouth, quit watching YouTube, pull out the textbooks or write a blog post.

4:00 – OMG SNACK TIME!

5:50 – Clear off table for DINNER.

6:00 — YAY DINNER!

7:00 – You can probably find me hanging out on Twitter for most of the evening.

7:30 – Evening Atrovent [if needed], Qvar and Symbicort.  Sucks to your ass-mar!  Maybe check my peak flow in here if I’m not lazy.

9:30 – I’ll probably be eating again around now.

9:35-11:15 – Hangin’ with my Twitter peeps.  I spend a lot of time on Twitter, yo.

11:15 — Check peak flow if don’t forget.  Take some Ventolin if it’s in the yellow, if I’m good to go I take some Atrovent to hopefully head off any nighttime lungy dips.  Go pee [you wanted details, Wego prompt, I spared you all the other times I went pee during the day], brush teeth and then it is . . .

11:30 – Inhaler by the bed . . . BEDTIME!

#hawmc five – ekphrasis is a funny word

Ekphrasis means writing about another at form.  So I’m supposed to yank something off of Flickr and write about it, basically.  [Yes I am late.  I had examness today so yesterday was spent cramming my brain full of motor development and other exercise-sciencey stuffs.]

I am supposed to write about this picture for 15 minutes and not edit it any.  So there is your disclaimer.

(image credit to hu, hanse on Flickr)

Air is simple.  Well, not in chemical matters is it simple.  It’s also not simple in regard to flying airplanes and doing the physics required to do such things.  But the way that we are supposed to interact with air is simple, and keeps us full of colour, brightness and life.

We bring the air into our bodies through a series of tubes.  These stand in the middle of the connection with our outer world and the colour that air is to bring us.

Sometimes, though, surrounding this beautiful interaction, as simple as it may be, darkness stands before the lightness, the wholeness and the colour.  This is when the once wide open tubes become smaller and more distant seeming, and it is hard to get the air where it needs to be.  It clouds thoughts and choices.  It tries to block what is ahead, and it tries to force change upon us.

We can change it.  We can change the closure, the grey, the darkness.  We can do our part to keep our lungs healthy so that we can experience the colour, the brightness, the flow of life around us.

And we can change this for other people by educating and advocating for lung health.  So that we can experience and breathe in colour without hesitation, that we can keep our lungs open.  That we can open the eyes to others to see what is in front of them in ten percent of the people around them.

Asthma is this reality.  Asthma is what causes me to realize that this world needs to change in many ways—to advocating, to sharing, to breathing life into those who need that extra nudge to become motivated advocates for themselves.  As much as asthma can take, it can also cause us to give more of ourselves—to be the colour amongst the darkness that this disease can become, to shine, and to remind ourselves that yes, we can do this . . . because if there is no darkness, there is no concept of light.  If there’s not negative, there is no concept of positive.  And if there is no grey, there is no concept of colour.

Lift your hands, reach . . . change your world. 

Breathe deep.

#hawmc four – wiki my asthma

Today’s HAWMC propmpt:

Revise your condition’s Wikipedia page.  Pretend you’re a Wikipedia writer – what sentence or paragraph should be included (in your opinion).  Has Wikipedia forgotten to include your condition?  Write a few quick facts and submit.

I think that because of the high prevalence of asthma, the Wikipedia page is fairly accurate and thorough. The only thing I would consider editing is this

While this is true, classification of severity needs to be done based on the most prevalent severity of asthma.  For instance, if someone has FEV1 variability of less than 20% (intermittent asthma), but have nighttime awakenings more than once a week, they should be placed in the “moderate persistent” category and treated as such.

For example, I typically do NOT experience nighttime symptoms that wake me up.  Yet, I do use my beta-2 agonist (rescue inhaler) daily on most days and have asthma symptoms daily.  This puts me into the moderate persistent category (which is also what my allergist has told me).

However, sub-categorization of severe asthma phenotypes are beginning to be researched—you can read about that here.

#hawmc three – not so secret

Hey world . . . asthma doesn’t just look like this:

It looks like this:

And . . . it looks like this, ten kilometers and 1:53:47 later:

#hawmc two – asthma awareness

I was really, really touched by the responses to my post about the DOC the other day—thank you so much to all who shared the post and commented either via the comments form or on Twitter.

Today, as I really don’t have much time to write a post and because it’s free write day, I’m going to link to my friend Steve’s asthma forums, in which we’re discussing the public’s perceptions of asthma.  If you have asthma, come weigh in.  If you don’t come read and offer us YOUR thoughts – what could WE do to help you learn more about asthma?

#hawmc one — questions

Getting started on WEGO Health’s Health Activist Writer’s Month challenge a little late, but better late than never!

Today is day eight.  The prompt is

Friday April 8
Write a poem (5-­15 lines) where every line is a health question.

Are you still coughing? . . . So when will it stop?
And how do you work out when it’s hard to breathe?
I thought asthma was easy, don’t you have that blue inhaler?
So why aren’t you okay yet? (Because for me the medicine works perfectly).
———
When will the questions stop, from them and from myself?

Why are things not good enough, not on one inhaler but four?
What am I doing wrong to be stuck at this place here?
And haven’t we done all these tests before?
What more are you looking for?

Is it clear that in more ways than one I’m fairly atypical?
And do you really want answers to all that you’re asking?
Do you (really) want to hear my story?
Or am I just being cynical?

sweet. | @asthmasociety

Representing for myself, over three million Canadians and the Asthma Society of Canada.  Thanks to Rob and the rest of the folks at the ASC for hooking me up with this sweet tech shirt.

You can bet I’m gonna race in this thing!