asthma / life

my prematurity story,

• by kerri

So, yes, I am a giant dork [if that wasn’t already COMPLETELY evident], and I geek out about things.  Long story short, Jay mentioned in his post that he was a premie, and I was a premie, and I geeked out,  and then we had a short how many weeks early discussion, since that is what that situation calls for . . . and now his mom has been checking out some other posts . . . how cool is that? [Yes that totally called for that many ‘ands’. Yes.]

Really, this definitely calls for one of these:  HI JAY’S MOM! [Totally reminds me of when I was in high school and people’s parents used to phone them and we’d yell “HI [so-and-so]’s MOM!” through the phone while they were trying to talk. Usually repeatedly.  In the case of my friend Amber’s mom, it was always “I LOVE YOU, AMBER’S MOM!”].

I realize at this point on the blog, too, I have yet to actually mention my prematurity.

NICU picture 2, Weighing 3 pounds. June '91

June ’91 – sometime within the month or so after I was born, weighing in at about 3 lbs, in NICU.

I was born 10 weeks early, weighing in at 2 lbs 13.5 oz. Like most premies, I had significant lung problems and episodes of apnea [stopped or incredibly slowed breathing] and required intubation twice [if I read the records right, they are kind of not fully legible], and had recurrent episodes of bradycardia [slow heartbeat], along with a heart murmur [which is still slightly present] and a severe patent ductus arteriosus — a congenital heart defect that causes abnormal blood flow to the lungs, and is common in premies because the whole physiology of gas exchange is different prenatal — that closed on its own, meaning that is a done deal.  I developed a staph infection, that caused sepsis [kind of like shock caused by an inflammatory immune response to the infection that affects the whole body… thank you Wikipedia] and joint problems (which lasted).  I also had diagnosed hearing loss [not an issue now] and cerebral hemmorage [common in premies . . . hey, I DO blame being a premie for making me weird, maybe this is an explanation! I also blame it for why I can’t do math.]

So that’s where I’ve come from, but how does it affect me now?

I could probably say that my prematurity doesn’t have that big of an effect of my life, simply because this is just how my body has always been, so I just don’t know any different.  That said, it has probably caused me to adapt in ways that I haven’t even recognized–though, I can share a few examples.

For instance, I always walk with people on my right side [and do this by habit, as one of my friends noticed when we were walking back to school one day in grade eleven], because I have extremely little vision in my left eye due to the retinopathy–glasses don’t help on that side, and all I can see are lights and shadows.  And, I really quite like seeing the people I am talking to!  My right eye is corrected with [very strong] glasses to be fairly normal, but not perfect. I think I have “floaters” in my vision field more often than I actually realize, because they have always been there [for example, I noticed them hardcore on Friday when I was out in the freshly fallen snow, because it was so freaking WHITE out there, but usually can ignore them pretty good].

Long story short, the thought is that my retinas were damaged because the blood vessels did not develop correctly, and thus became scarred [I am in school mode apparently, I have just used the world “thus”], and I am at increased risk for retinal detachment. Additional theory involves the fact that I was mechanically ventilated/on oxygen, which may have caused damage to my retinas (I think this is a pressure related thing, but don’t quote me on that).  I am currently evaluated by an ophthalmologist specializing in retinopathy on a yearly basis, and get to deal with the fun eye drops and that thing that beeps and measures intraoccular pressure. That is fun.*/sarcasm.  See also: this whole vision issue is very likely a contributor for why I don’t like playing sports involving balls potentially flying at my head or whatever, because I can’t see them half the time [okay, I don’t actually like playing sports in general. Except maybe, you know, hockey with people who are not super intense].  And I have not yet investigated whether it would affect my ability to get a drivers’ license, because I am not exactly interested (or perhaps I’m just not interested in them telling me no).

Regarding my joints, I think this has been the biggest of the remaining issues.  They do not cause me any pain [except the hip with insane overuse].  The joint issues only affect the right side of my body–my right hip, elbow and wrist are affected, but as far as I have realized [and compared with my left side], my ankle is fine.  Interestingly, I did not even notice my wrist was significantly less flexible than my left until a year or two ago [I can’t fully remember, but it may have been while I was studying types of movement for the biomechanics chapter of intro kin last year and doing all the examples while sitting in the public library.  See also: first paragraph].  As for my right hip, I am not sure the technical terms for it, but you know the whole sitting “criss-cross applesauce” bit? Can’t do that. Or certain yoga poses, if we want to make this applicable to my current life that does not involve any more criss cross applesauce.  If I remember correctly, that caused several awkward moments sitting on the floor in class/gym class growing up [“Sit with your legs crossed and hands in your lap.” “I CAN’T!” . . . yes.).  Thanks to the hip, my right leg is also shorter than my left leg, as my hips are not evenly aligned [lost points on my postural assessment during seniors lab last term on THAT, by the way].  As is likely fairly obvious, my left leg is much stronger than my right.  I also seem to have developed some kind of irregular curve in my spine due to this [also causing lost points on my postural assessment, dang it, and also questioning from my pulmonologist whether I had scoliosis.  I have not bothered to follow up on this.]

Prior to 2002, my right leg was 6.5 cm shorter than my left, and “corrected” by the addition of a lift to my right shoe, which was accompanied by kids constantly asking why I was wearing two different shoes [I have to give myself props here, I believe I was fairly patient explaining this 4,000 times to every single new person I met].  Additionally, I still walk with a slight limp (see also: reported by other people).  In 2002 [age 11], I had an operation done on my left knee to remove four growth plates and slow down the growth of my left leg to allow my right to “catch up” while I was finishing growing.  By 2004 [I think], I moved from the outer lift on my shoe to one that is inside my shoe [which now allows me to own multiple pairs of shoes and any shoes I want to pending they, you know, cover my entire foot], and therefore I typically only get the “You’re limping, are you hurt?” question now, and not very frequently.  Currently, the difference between my left and right legs is 2.5 cm.  I was followed by a pediatric orthopedic surgeon and x-rayed incredibly frequently, especially in the planning stages before my surgery, because it had to be timed so exactly to correlate with my growth to avoid the chance of the difference in lengths just switching out.  I believe I was discharged from his care when I was fifteen or so, and it was honestly a bit sentimental as he had followed me my entire life.  I remember him telling me “Well, Kerri, you were a very sick little girl, but you are doing fabulous”, and then freeing me. [He was awesome, by the way, he and my mom were basically on first-name basis and he made frequent-flyer jokes sometimes when I came into clinic, and often came through the back door to x-ray looking for us when I had appointments].

In turn, obviously the joint issues affect my athletic ability.  I run slow [and did so even before the asthma became an issue, although that may have been present longer than recognized], and definitely believe that because these anomalies have probably caused my muscles to adapt a bit differently, I definitely get tired easier [I often wonder how much the differences in range of motion affect the amount of energy required by my muscles in my legs, and in turn how this affects the asthma [can I take this moment, once again, to redirect to the first sentence, please].  I throw [and catch] left handed because that arm is stronger, so baseball is actually hilarious.  I golf and play hockey left handed [and by golf, at this point, I mean mini-golf. Though I keep saying I am going to try golfing, and also because since I joked so often about joining the golf team in high school, maybe I should actually try it. I have clubs, who wants to go?].  As for badminton and tennis, I think I am actually STILL confused which hand I play with.  [Due to all of the above, I am also fairly useless in volleyball as my arms don’t line up].  On a positive note, because my right arm does not straighten fully, when fully extended it is perfectly angled for an upper-block in self-defense type things.

Day to day, I think the biggest way my joint issues affect me is in putting socks on and tying my shoes. Seeing as these are obviously fairly critical activities, I’ve adapted for that.  Think about how you put your shoes on and imagine not being able to put your foot on the side of your opposite knee, and THEN when you think of just bending forward to put your shoes on, remember that one arm does not extend fully . . . and you will kind of understand what I mean . . . it is doubly tough with socks!  [I will fully admit tying shoes can still be tricky considering I am fairly impatient. I think the most frequent phrase my friend Tara said to me in high school was “Your shoe is untied AGAIN”, it got to the point where she just grabbed my leg and retied my shoes daily and finally got me in the habit of double-looping and double-knotting.  Simple things = big difference.]

Currently, my biggest day-to-day challenge is, of course, the asthma.  My care team has mixed feelings on how the prematurity may have affected my lungs, considering I didn’t develop asthma until I was sixteen.  My allergist has thoughts that there may be a correlation, whereas my primary care doctor and former pulmonologist did not. A respiratory therapist/asthma educator I saw a few years back believes that my asthma, or at least the way my lungs behave and PFTs look, is likely related to my prematurity [example: increased reactivity in my small airways].

At this point, the why doesn’t really matter as much as owning it does!  For me, owning it happens through understanding it, treating it, and doing my best at dealing with the stress that may come along with chronic disease effectively [stress = increased airway reactivity = not good!] and keeping my body healthy through regular exercise in spite of the exercise induced asthma, working at the nutrition thing [I’m definitely guilty about things like not eating till noon and sucking at eating the good stuff . . . for a vegetarian, I kind of suck at the vegetables aspect sometimes] and doing my absolute best to avoid picking up any gems [a challenge that involves lots of hand washing when I work with 55~ elementary school aged kids, as well as pre-schoolers, and too many incidents where I’ve seen university students walk out of the bathroom without washing their hands . . . and this guy] which can make my asthma much worse.

I currently take three control inhalers per day–an anti-inflammatory corticosteroid inhaler [Qvar] twice a day, a combination corticosteroid + long acting beta-2 agonist bronchodilator [Symbicort] twice a day, and an anti-cholinergic inhaler [Atrovent, which is another variety of bronchodilator that works differently than the beta-2 agonists].  This is in addition to my blue rescue (short acting beta-2 agonist bronchodilator) inhaler [aka Ventolin] as needed and before and after exercise, and Ventolin via nebulizer when I feel really bad [not too often unless I am sick, fortunately!].  It’s a lot, and that sucks, and it took so long to come to this combination that WORKS, but at this point, I DO feel healthy most of the time, which is something I couldn’t say for at least a year and a half after my diagnosis in 2008.  So whether that is linked to the prematurity, especially now that I have learned I have family history of asthma [my grandma was diagnosed at 75, and her dad had asthma], who knows, but it is the more significant of the things I deal with on a day-to-day basis.

It is a ton better than it was.  I remember all-too-frequent occasions in my first year of university fighting to make it through class, often half hunched over my desk, holding out till we were dismissed to go take my inhaler. I still have the odd class like that, but they are few and far between. (While I am very okay talking about my asthma when I feel fine, I really struggle with letting people see/know when I am not okay. The only times I can remember taking my inhaler in public are all exercise-induced things when I wanted to keep going [during races/that time I crapped out at the gym [I did not keep going that time, I think I freaked my friend out too much]/that time I was riding a half marathon on the stationary bike and I refused to quit before the 13.1 were done. I’d say about 98% of the time I do the inhaler in the bathroom to avoid people staring/freaking out].

Out of all of the above, the asthma is evidently what affects me most in terms of what I blog about and advocate for, because it wasn’t there fromt he get-go, and I’ve had to consciously adapt for it.  In the day-to-day, inhalers, spacers [AeroChambers] and peak flow meters clutter my bathroom [drives my mom crazy]. There’s pretty much a permanent inhaler bump from my Ventolin in my pocket, usually the right one [in case you cared to know].  Often, the other inhalers spread beyond being contained in the bathroom–I keep a Ventolin inhaler by my bed [because there is very little more annoying than having to wander around to find one on the rare occasions my asthma wakes me up at night . . . and not being able to find one is the worst!]–there is usually one in my backpack too, but that one seems to have been transplanted elsewhere [I really need to replace that one before lab starts and my classes move into the gym!]. If I go out for more than a few hours, the Atrovent usually tags along.

In exciting news . . . I am working at scheduling a trip to Pittsburgh in August to be a participant in a research study led by world-renowned pulmonologist Sally Wenzel called the Severe Asthma Research Program.  Though my asthma is tricky, it is not severe–I am wishing to join as a comparative participant and hoping to contribute so that 1) people don’t have to go through what I went through in trying to increase control over my asthma, 2) I can use my silly lungs for good and 3) HOPEFULLY learn some more about my own asthma!  More on that to come . . !

Back to the prematurity bit . . . it’s been one heck of a journey from the note in my NICU record stating “this baby is a sick baby”, to where I’m at now.  And even if it hasn’t been all positive, it definitely helps explain me, and helps me to see things differently . . . Who wants to be part of the norm, anyway?

advocacy / asthma / being a student / health + fitness / health advocacy / kinesiology / life

going and growing.

• by kerri

I have about a million and one thoughts flowing around in my brain, so bear with me!

—

What I lack in size, I hope I make up for in passion.

Maybe that kid was right–maybe I’m “too tiny to be twenty”. Sometimes I don’t feel twenty–I convince the kids of it daily, but sometimes I have a hard time convincing myself that I could possibly have a quarter of my life behind me already. Sometimes I think I should have more figured out. And sometimes I just feel small, whether that’s in a good way or a not so good way.

I just hope that I’m already making an impact for somebody out there that helps them grow.

—

I taught a grade eleven biology class about asthma today. It went well, but as always I forgot to say a few things I intended to. I’ve done this presentation several times and I tend to change it up at least a little every time based on what I’m feeling in regard to asthma and life. Today, to increase tangibility for NON-asthmatics I had a good section on exercise management beyond asthma and exercise. However, sometimes high schoolers are like talking to brick walls–I don’t blame em, I was (and am) totally not a speaking in class person. Overall, I hope the three students with asthma are maybe thinking a little differently about health management and asthma, and the 25 others are a little more aware of what people with asthma deal with. That said, it was their last day of classes before winter break, so some sluggishness was expected! As always, I’m hoping to keep improving this lecture and my OWN knowledge of asthma, physical activity and how it affects the adolescents I’m speaking to.

—

Speaking of holidays . . . Whoa, nutrition out the window. I have not been doing great in that regard since exams started up, but I have totally fallen off the track! Because at first it becomes “I’ll get back on track after exams” and turns to “Well, its the holidays! I can get back on after!”

Wrong mindset, brain. I had declared on Sunday after not only McDonalds but also Pancake House that I would reclaim some ground on nutrition over the week. That turned into pizza yesterday with Evan while Christmas shopping and pizza today with Dean; tacked on to all the chocolatey goodness that has been served up at work by my coworkers and our families AND the lovely chocolate “hedgehogs” that I received as a gift after teaching grade eleven biology this morning AND the bits of lovely deliciousness my mom keeps baking.
It also morphed into basically no exercise since Sunday. Granted, Sunday included both hockey AND the gym, freaking fabulous; and I suppose that hitting up three malls yesterday in five hours may count for a little . . . but I don’t think so!

To once again quote Jay in his seemingly infinite and entertaining wisdom, “Why are the holidays any different? Because the table’s longer and there are more people at it?”. Yeah, true story.

Not to mention that this has been going on since Sunday. And you know when “the holidays” start? Saturday. At the earliest. That is a week of pre-holiday slackery. Even if the holidays should be no different, which I fully agree with, starting the nutritional/fitness downslide when I was working at getting back on track is no bueno.

Tomorrow: I own you for fueling better. That is my choice, regardless of what deliciousness people give me.
Saturday, I own you for a pre-Christmas dinner workout.
Sunday is fair game for whatever happens and not to think too hard about it.
Monday, boxing day shopping is a sporting event; resume regular programming, and rock this.

I got this.

—

Returning to old schools makes me very aware of the impending future. Today, I headed over to my old high school after work (right next door), an hour before I needed to be there to speak. I dropped my stuff off in the very dark room and made my way through the halls looking for familiar faces and to repeatedly answer the same questions for teachers, people who have played huge roles in helping me to learn and grow into who I am . . . “What are you doing now?” and “What are you planning to do?”

Two and a half years ago I was sitting in those desks. University seemed so far off, the career part of the future even farther. Two and a half years ago I thought I knew who I was; in reality I was as confused as ever. Two and a half years ago I was one of those students contemplating the big world outside those walls.

It makes me see what I’ve gained. But it also makes me wonder what I will have gained in two and a half years from now. I left high school and thought I had a plan. Then my plan changed. My plan still changes minute to minute; other than “probably still in school” I have no idea where I’ll be in two and a half years from now . . . Less idea than I thought I had two and a half years ago.

That scariness is part of the journey. I’d be lying if I said I didn’t thrive on it; I’d be lying if I said it wasn’t scary. But every single day I get closer to that answer. Every single day I know more. Every single day, things happen in a way that affect how I see the world and how I make choices. Every single day, I change as the world changes.

Every single day brings me closer to that answer.

And I wouldn’t trade this crazy journey for anything.

There are even more GOOD THINGS to come.

asthma / health + fitness / kinesiology / work

fantastic friday

• by kerri

This is the best I’ve felt in weeks.

This morning, I woke up and grabbed my inhaler has a completely different meaning.  I woke up, realized how fantastic I was feeling, and reached up to grab my Ventolin to pre-medicate for my first workout in over two weeks, instead of reaching for my inhaler to take the edge off gunky morning lungs.  I kept it short and light, covering 5.66 km in 25 minutes–the last thing I want to do is start going too hard too fast and end up back where I was two weeks ago and get sidelined again (I’m doing a vlog series right now called Working up to Working Out, chronicling my journey back to kicking ass, so feel free to check that out).  And I feel even better afterwards.

Following that I checked the MyBlackboard thing to see if our research papers for Issues in Sport had been graded yet (surprise surprise, nope. They were due November 18th. This would not bug me so much if I had grades for more than one of four reflections for the class also), and the icon under Promotion and Adherence caught my eye.  Course wrap-up message and final exam grades.  Bring on the seconds worth of anticipation when you can’t get the page to load fast enough, right?

The final exam was yesterday and our (unofficial) exam marks are posted (this has me wondering if Jay slept at all or just motored through them), and scored 84% . . . and if all stays as is, will have officially earned my first A- in university!  Needless to say, I am stoked, and that combined with how I left my Physical Activity and Aging exam feeling so positive on Wednesday night . . . well, it’s awesome.

And with that, and being a ball of energy, I am off to work — today is “Santa Day”, so it will be full of pizza and presents and staying at work until 8:30!

But also full of feeling positive, so hooray!

asthma / health + fitness

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

• by kerri

*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.

asthma / badassmatics / health + fitness

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

• by kerri

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