asthma, the plague, and wishing for a cure

For the first time in two-plus years, I didn’t complete a 12 of 12. I only took six pictures. I was sick, and at the lake, and nothing really happened. I tried, but they didn’t happen. I was thinking I could cheat and post a bunch of random pictures, but in reality, I feel like it’s not legit if I didn’t take them on the 12th.

And when I say sick on Saturday, I mean full-frontal cold sick. Like absolutely ridiculous. I’ve had bad colds before. I’ve had long-lasting colds before. And I’ve had these with asthma before, but nothing quite like Saturday was.  This is The Plague: Friday night was the Leg Cramp from Hell, thanks bronchodilators leeching all the potassium from my muscles, in which both the posterior and anterior muscles in my right calf cramped up simultaneously.  Saturday was the coughing spasms, a continuation from Friday but incredibly intense and body-wracking. I did two doses of the inhaler and three nebs on Saturday to try to keep the cough to a minimum, and I really can’t stand to think what they’d have been like without the nebs.  Sick with asthma? For me, this is it. It’s countless hits of inhalers and multiple daily breathing treatments. It’s coughing so hard my ears pop. The coughing and the nebs are probably what lead to how my voice sounds:

Because you know what I’ve noticed? It’s all about better treatments. All the research. Never mind that we don’t know what causes this stupid disease, we know the root of it [inflammation and constriction of the muscles surrounding the airways in the lungs] and all research seems to care about is treating it. I benefit every single day from this treatment, and I am so grateful. But when one is to speak of advances in asthma treatment, there have realistically been very few in the recent past. even in the last 20 years, the medications are still much the same as they were in the 80s and 90s, with perhaps some modifications in how we are able to administer or dose our medications.  I’m not saying maximizing treatment options isn’t important. This affects my day-to-day life.

But I really want to see somebody trying to figure out the cause of this disease. How to interfere with that and stop this disease from developing to begin with. And once that’s found, figure out how to reverse the process so that we can cure this thing. It’s not about scientifically bunk treatments like bronchial thermoplasty [because surely burning the inside tissues of the lungs down works to affect the muscle on the outside from constricting, which is the bulk of the significant problem aside from inflammation in more severe asthma], or about the inhalers, or whatever “miracle cure” herb you’re trying to shove down my throat. I’m not into that. I want someone to figure out the pathophysiology and cure me, dang it. I don’t mention the word cure often because it’s too big to even think about. But I want one.

And when better to express my wanting people to actually care about a cure for asthma than asthma awareness month?

Because somewhere along the line, we have to stop settling for “good enough” and start reaching for “gone forever”.

world asthma day 2012

First, there will be more road trip pictures eventually. But because I do things non-sequentially, we’re gonna roll on.

The mirror mantra for this week [because, dang it, I forgot to leave a mantra for the housekeeping staff in Watrous, SK last Monday]:

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The above mirror mantra may have to be a permanent addition to my bathroom, unless my mom gets rid of it like she has some other ones after a few weeks [she actually is responding rather positively to the mantras. Win!]. Once again, thanks to Jay for that piece of focus, and Dia for being my teammate in the crazy journey of asthma, perspective, #kinwin and keeping me accountable to it all.

Today is World Asthma Day.

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[Good picture there, right? #sarcasm. You get the deodorant and the ID bracelet and some med boxes.

Also the intended World Asthma Day tree tee I designed a couple years ago.]

My Facebook status, Facebook page status and earlier tweets today have been variations on this same theme:

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Okay, so I can’t go down on my own encouragement to kick ass and get active. Because “k-i-c-k-a-s-s, that’s the way we spell success”! [Thank you Giant by Matthew Good].

Really, the only ass I am kicking, or plan to kick, is my asthma’s [and my own].  I am pretty sure I picked something up on the road and am getting sick, because the three day mild sore throat has gone but turned into some increased sinus issues, dyspnea and coughing. Obviously the asthma finds the need to make itself known on World Asthma Day.

So what do I do? Well, my lungs feel like shit anyway, so might as well go take some meds and do a breathing treatment and give the neb an “eff you, asthma” finger for some perspective, strap the Garmin on it and ride that new bike, right?

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If the right answer today was to sit around because of the asthma . . . I’d rather be wrong. [The professionals would say I’m wrong. I’m not practicing what I preach either]. Come on, what is more appropriate than riding the bike called INSPIRE on World Asthma Day with the mantra of Being Intentional? Answer: not a lot.

So . . . I was intentional at kicking my own ass. Good enough, right? Also why is it not possible to not look like a total dork when protecting my brain? [The other part of my helmet is pink with flowers, but of course you can’t see the awesome half, right?].

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Representing for the Asthma Society of Canada.

So I got out there for my first bike ride in . . . years. [I am not very good at riding straight again yet. I can’t do sharp turns. Also when I met up with a lady with a stroller on the sidewalk I totally just pushed my bike along so as to not, you know, ride into them.]

Was it coughtastic and breathless? Yep. Will I pay for it later? Probably. Am I exhausted? Totally. Do I wanna go out there again? You bet.

Was it worth it? You know it.

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World Asthma Day or not, “We breathe it in, the highs and lows.” [Needle and Haystack Life, Switchfoot].

The goal? Do Good Things. Make a person or two think differently. Kick my own ass. And keep on doing it. And the disease? Kick it even harder.

Having chronic disease isn’t a choice. Perspective? It is. What I’m going to continue in regard to the asthma. I’ve made those choices:

Owning it. Being intentional.

“doctor, doctor, diagnose the shit outta me . . .”

*I wrote the bulk of this on Thursday, hence why it says “today” instead of “yesterday”. No, I’m not going to edit it. Have to write in the moment, yes?*

So it pisses me off a bit that the last two times I’ve had scheduled doctor’s appointments [aka supposedly healthy visits] I’ve been a) flaring or b) sick.  My last appointment I had some sort of weird exercise-induced flare going on that just wouldn’t give in; and today I have the cold that’s gunking up my lungs and keeping me knocked in the yellow zone.  The cold is what is likely responsible for the whole burnout issue the other day–being sleep deprived, not breathing well, and awake by yourself at 3 AM can do crazy shit to your emotions.  Did my blog rant thing, bounced the thoughts off Natasha, and I’m back to my usual badassmatic self.

Minus the whole exercise component.

Because the resolution of today’s doctor’s appointment?  NO exercise until I’m back to baseline, stay out of the cold as much as possible, and start prednisone if I backslide or feel like I’m not getting better, and then for good measure she totally chased all that with some form of “listen to your body” lecture.  That’s a new one.  So suddenly she’s done some form of 180 on not only giving me fluffy lectures but also trusting me with the decision to start prednisone?  Who are you and what did you do to my doctor?  My history with her on the subject of prednisone was before that I needed to physically go in to see her before starting it so that she could listen to me not wheeze and tell me to start anyway, which I would just procrastinate until I thought I was getting better [because prednisone sucks for everything else except making you breathe better, and by the point you actually want to go on it just to breathe again you don’t care about the insomnia, the hunger/nausea combo, the hyperness, and whatever personal side effects you get from the evil candy [I’m lucky that other than the hyperness thing, I don’t get the ridiculous mood swings].  But nope, instead of a lecture about the all the ridiculous things pred can do to your body, I got off with the list of “No exercise, stay out of the cold, start pred if you need to, listen to your body” lecture. WHAT?

I think this woman is starting to get me.

Okay, for real, the whole paying attention to your body thing isn’t actually fluffy at all, and I totally use it with people when we’re discussing the whole exercise thing.  Except you know, stuff like Oprah made it fluffy.  Anyway, so that front, I’m usually okay on–totally get that whole bit in lecture at least once a term, so being in kinesiology is good for that.  The whole bit gets a whole lot more important when you’re mixing chronic disease, like asthma, in there, and are focusing on maintaining some form of fitness routine.  [RELATED: On the whole note of paying attention to your body, unlike in May ’10 when I brewed a lung infection for over a week before going in, COMPLETE with fever that I had no idea I had.  HELLO, it was May. I thought it was just getting hotter out, I had no idea that it was actually just my body that was screwed up.  So yes, maybe that lecture was justified as she may have recollected the whole issue of me not knowing I had a fever. Way to be out of touch with your own body much? Sheesh.]

So now it is legit today, so now you can switch your brain to think of today as Friday.

Today, I didn’t make good on the whole no exercise/no cold air thing.  Like 24 hours out of the whole deal I effed it up. Yeah for badassery?  I met my friend Kelly for coffee. We always meet at Starbucks . . . so I went. Turns out we were meeting at the nearby Tim’s.  So I had to haul down the street, which is usually no biggie.  So maybe my doctor is right on that.  Because I entered the mall sounding like I had some sort of plague, and people kept looking at me when I coughed as I walked through the mall to meet Kelly while simultaneously digging through my pockets for my inhaler.  So yeah, managed to screw a variety of things up, but at least I got a grande non-fat no whip peppermint mocha out of the deal, right? [Despite the whole non-fat no whip part I should probably give those up until I can work out again [as they are totally 280 calories and 59 grams of carbs. But only 3g of fat.  Compare that with a REGULAR grande peppermint mocha at 400 calories, 15 grams of fat, 60 grams of carbs and 12 grams of protein, you’re at least saving yourself 12 grams of fat (and 120 calories). Hooray!]

I don’t know where I’m going with this anymore, since I just went on a Starbucks nutrition tangent and all.

That’s what happens when a blog post spans over two days and also I need to sleep. So instead of trying to be coherent, I’ll close with one of my favourite WheezyWaiter videos that happens to be on the subject of doctors, and write about the second half of the appointment tomorrow.

knowing when to step back: i could use a little break.

Along with knowing how hard you can push yourself, there’s also that fine line of knowing when to step back.

Throw chronic disease in the mix, and that line blurs even more.

For me, it’s evident that I don’t exercise when I’m not breathing at 80+% of my best peak flow [aka in my yellow zone]. Especially right now when I’m not even doing anything and am breathing in my yellow zone. Something earlier compelled me to attempt some push-ups. Because I’m a genius. Three of them and I was on the floor, and not in push-up fashion [granted right now I am doing modified push ups. But that is 1) better than no push ups and 2) another story for another day].

Oh right, and the whole mom quote of the day saying “Yeah, you don’t sound healthy when you cough.” Thanks, Mom. Thanks. [That said, I have a normal, baseline cough. It is not as brutal sounding or feeling as this sick cough is. Sick cough you can totally tell there’s rattly gross junk in there.

And it sucks. I’ve essentially gone from almost 30K last week to zero, which will remain zero unless I get better. I threw some bicep curls in tonight while printing an assignment because really, 3 x 10 with five-pounders = not terribly taxing on the lungs and at least I did something a little good. YES, if I’m just flaring mildly, I often do throw a workout in there. I probably shouldn’t but I do. I catch a cold though, and everything gets put on hold, because my lungs don’t take that well.

That’s what’s brutal. That I may actually end up backtracking having to take a week [or more] off of working out. I’m averaging about six hours of physical activity per week, probably about four or so of those in actual workouts, and the rest in commutes and stuff. I’m 21 kilometers behind where I was in October for November, which is something I definitely would have caught up with this week if I wasn’t sick. Thank goodness i’m not training for anything [training? What’s that?]

It’s brutal when I was so excited to tell my doctor on Thursday that I’m doing fantastic and exercising for like four hours a week and so on. And now I get to go in and tell her I’m burnt out on the asthma shit and can we please get me in and out as quickly as possible so I can go on with my life outside of my currently screwed up lungs.

Oh, Mom and Grandma, if you’re reading this, consider this your disclaimer on the fact that I’m about to give asthma The Finger in this picture and drop an f-bomb in the next paragraph:

Last night, today, THIS is how asthma makes me feel. Pissed off and exhausted and angry. Fuck asthma. Screw the nebs and the inhalers, the jitteriness, the coughing, and the not being able to clear this shit out of my lungs. I’m waking up several times a night, and have done so multiple nights this week, and then I have to be awake and think about how while this flare and this cold are temporary, this disease is forever. And how I will have to do this again at some point after I get better. And that’s something that’s hard to think about. It’s much easier to deal with when I feel okay and I can just not have to deal with thinking about it until I get sick or flare again. I realize I have no idea how I went through months at a time of feeling like shit without a burnout. I have no idea. The intensity of it increases and decreases, but this intensity is what some of my friends with asthma face every single day and then some [also, to break the seriousness for a moment here, totally starting a giving asthma the finger project over here on Facebook. Because it’s therapeutic].

Last night I was burning out on the asthma stuff hardcore; it was honestly the lowest I’ve felt in years about something in my own life. Today I started out rough but have been trying to step back in a different way; push it out of my head, focus on one doubled-over coughing spasm at a time, one inhaler or neb at a time, one breath at a time.

Yeah, I need a break from this. That’s not going to happen, and I’ve accepted that. I know I will get better from this, but I also know that it will happen again. Because you can never let your guard down — you can’t just stop the inhalers, the doctor’s appointments, the germs, the nebs, the medication-induced jitteriness and tachycardia, the frequent hand-washing, the thoughts of every little step involved in taking care of yourself. And you know what, this is my reality. Nobody gave me a choice in the matter of having to share my body with asthma, but I do have the choice in how I perceive it [own it] and how I fight it with every last thing I’ve got.

And if I can have even just one more little piece of control in this that is in my control and doesn’t come off of a prescription printout, I want that. I want to throw all the fight I have into this disease — not just for me, but for everybody. And being able to share that with everybody–that your healing, inside and out, your body and your heart, doesn’t have to come from a pharmacy. That little piece is a big piece of my life: exercise.

But for now, it’s nebs and Watch The Sky on repeat.

Trying to remind myself that: even if today was a good day wasn’t true for today, it can be true for tomorrow.

i’m lost at sea. the radio is jammin’ but they won’t find me. i swear it’s for the best, and then your frequency is pulling me in closer until i’m home. and i’ve been up for days, i finally lost my mind and then i lost my way, i’m blistered but i’m better, and i’m home

i will crawl, there’s things that aren’t worth giving up, i know. but i won’t let this get me, i will fight. you live the life you’re given with the storms outside — some days all i do is watch the sky.

this room’s too small, it’s only getting smaller, i’m against the wall. and slowly getting taller here in wonderland, this guilt feels so familiar and i’m home

i will crawl. there’s things that aren’t worth giving up, i know. but i won’t let this get me, i will fight. you live the life you’re given with the storms outside — some days all i do is watch the sky. some days all i do is watch the sky

i think i, i could use a little break. today was a good day. i think i, i could use a little break. but today was a good day. and it’s a deep sea in which i’m floating, still i seem to think that i must crawl. there’s things that aren’t worth giving up i know, when you can’t bear to carry me, i’ll fight. you live the life you’re given with the storms outside. some days all i do is watch the sky. today was a good day. today was a good day.

watch the sky, something corporate