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.

fitting into the past

I think I wrote this about three years ago.

Fits.

hold up your hands / hold down your heart / you open your mouth, it tears us apart / throwing the pieces, they’re falling faster / we’re getting closer to a disaster . . .

broken thoughts and mended words / where did you go?

it’s about time we crash, we’re bursting into flames / and i’m sick of playing your stupid mind games / there’s so much out there to discover before we die / and i’m not wasting my time here / listening to your stupid lies / i’m ready for the break down / it’s time for us to crash.

closing my eyes / cause i won’t listen to your anger / or what you’re missing / so sick of your words / words you’re throwing up. / like a bitterness when wasted time is up

i’m not meant to be here / so i’m not gonna stay . . .

On the road tomorrow to Monday.

the beautiful letdown

A couple years ago, my friend called my other friend and invited us to his youth group.  Now, I love youth groups, but this is one I’d never been interested in going to.

Megachurch.  Youth building.  It has a food court.  Indoor basketball.  I know, sounds awesome right?  I am slightly a contradiction.  I have nothing against these things on principle, but they also were exactly why I was against going–said youth building cost two million dollars.  Which, you know, could have fed and clothed and medicated and sheltered a lot of people, near and far.  God does not need to be sold to youth with cool video games and bonfires outside of garage door walls.

Yes, money is what fuels us in many respects.  It’s a rough concept—empowering and demeaning depending on who is the possessor of the money, and how much money they are the possessor of.

And that night, as one friend and I sat in a church where we couldn’t even find the guy who invited us in the throngs of people, where nobody reached out to us, where nobody reached us, where we were asked if we wanted to purchase various things, where the material things of the world took precedence over the God that the youth had just listened to a pastor discuss.

The beautiful letdown.  I still want, and at the time I still wanted, a church that’s full of realism.  People who have been the victimized, the distraught, the depressed, the desperate.  The desperation that has ultimately allowed them to experience healing, the desperation led them to the people they are now—these are the people I feel I can identify with most.  Because they are not trying to be what they’re not, only what God wants them to be. 

Who are we, letting society decide our coolness, attractivenss, who is to be idolized, by random unknown standards?  Who are we, using these things to divide ourselves further than this great big world has already divided us?

Walls . . . breakdown.

It was a beautiful letdown / When I crashed and burned / when I found myself alone, unknown and hurt / It was a beautiful letdown / the day I knew / all the riches this world had to offer me / would never do. / in a world full of bitter pain and bitter doubts / I was trying so hard to fit in, fit in / until I found out / that I don’t belong here / I will carry a cross and a song where I don’t belong

It was a beautiful letdown / when You found me here / yeah for once in that rare blue moon I see everything clear / I’ll be a beautiful letdown / that’s what I’ll forever be / and though it may cost my soul / I’ll sing for free / we’re still chasing our tails / and the rising sun / and our dark water planet’s spinning a race where no one wins and no one’s one

See I don’t belong here / I will carry a cross and a song where I don’t belong / I don’t belong here / I’m gonna set sight and set sail for the kingdom come, Your kingdom come! / Won’t You let me down / Let my foolish pride forever let me down

Easy living / you’re not much like the name / easy dying, hey you look just about the same / won’t you please take me off your list / easy living please / come on and let me down

We are a beautiful letdown / painfully uncool / the church of the dropouts, and losers and sinners and failures and the fools / what a beautiful letdown / are we salt in the wound? / and let us sing one true tune

I don’t belong here / no I don’t belong here / nah, I don’t belong here / feels like I don’t belong here / won’t you let me down, come on and let me down, you always let me down, I’m so glad that i’m let down, come on and let me down / cause I don’t belong here, come on and let me down

The Beautiful Letdown, Switchfoot

This song went through my head all night.  Because I didn’t belong there.  In the small sense, I did not belong at that church.  My church now?  It’s so full of love.  It’s in debt, but it’s full of passion.  Full of prayer and tears and hope and big, big love for each other, and most importantly, big big love for Christ.

But after sitting at that table in silence with my friend thinking about it . . . I don’t belong here in this world either.  There are greater things beyond it when the journey here is done.

what i’ve overcome

what i've overcome

The thing I dig so much about this song is that it isn’t preachy in any way.  Because Fireflight is a Christian band, and I’m a Christian, I read it in the Christian context.  But it doesn’t need to be interpreted that way.  The Someone saving us, could be anything—a Higher Power, a significant other, a friend, who saves us from ourselves . . .

I know for me, the Someone saving me, though, is God.  God came into my life at a point where I still didn’t actually believe He existed, but I was ready, so ready, to give up and just quit life.  He continues, day after day, to not let me fall into the same traps of desperation, but to continue to seek out happiness, love and LIFE.  Our passions keep us breathing, believing.  My passion . . . Jesus.

Before I had Him, though . . . I was depressed.  Bullying and the delayed by two and a half years realization that one of your best friends really has died, out of nowhere so it seemed, and really generally just feeling crappy about yourself does that.  I spent the summer of ‘05 in a dark place, and either numb or really down.  I felt defeated, and I felt like there really was no purpose to being here . . . I remember questioning my grade seven social studies teacher on the meaning of life if we’ were all just gonna die anyways . . . that was before the depression stuff really kicked in.  I was curious, but maybe it was a lead.  Because really, what is the point if we’re all just going to die?  I thought that.  I thought death was the answer.

That’s why we need passion.  A reason to change this world while we’re here, and something to keep on living for.

But I overcame that lifelessness inside me.  I opened up my heart to feel again, feel things other than desperation. 

Because the desperate spot?  It was filled with Jesus.

These things, though, the things I’ve done in the past—the depressed stuff, the eating-issue stuff, the mistakes . . . have all shaped who I am.  They have no impact on the way the world perceives me now unless I speak of them, but they’ve changed me.  But in a bigger way, God has changed me.  He gives me second, third, fourth, fifth chances.  He lets me make mistakes, He lets me fall, so He can say “Okay, so what have you learned?”

God has used these things in my past, to break me and build me stronger.