I don’t do the halloween costume thing particularly well, but I do love me some tutus.
[And thrifted Threadless tees for $3.99]
And where the inhaler is, nobody knows.
I don’t do the halloween costume thing particularly well, but I do love me some tutus.
[And thrifted Threadless tees for $3.99]
And where the inhaler is, nobody knows.
My friend Alanna asked me to share a bit on public perception and asthma on her blog, Life on T1. Alanna has Type 1 diabetes and lives in Nova Scotia [reppin for Canada!].
Of course, you know me . . . I had to spin it around a little bit!
Head on over to Alanna’s blog and check out what she appropriately titled “Every Breath Counts“!
My friend Mike started a thing called “Mirror Mantras”, where he posts a positive or motivating phrase on his bathroom mirror to keep him inspired throughout the week. Good ideas are worth stealing, and I certainly jumped on board the bandwagon. And then . . . derailed :] (the nice, academic-y word for derailing is lapsing :]).
Since my theme this week is getting things back on track, I added Mirror Mantras to the list (sorry, Mom, just when you’d gotten used to me cluttering the bathroom mirror with post-its I stopped, now that you’ve gotten used to it being un-cluttered, I’m back! And I snapped this picture yesterday, but didn’t get it up till today].
I’m feeling this one is appropriate given yesterday’s post:
And if you’re thinking “Hey, that’s familiar!” It’s cause I used it in May. Good mantras deserve to be recycled.
On that note, I did my first workout in a month today, which was obviously my first workout since getting sick in California. A very hard 25 minutes but I didn’t feel as bad as I thought I was going to feel (until about two hours later). But, even if I didn’t feel totally awesome after, my lungs have opened up as the evening has worn on and I’m feeling really good now. Regardless, I am very happy I got back on the bike, even if it was slow and short!
hello, good morning, how ya do? what makes your rising sun so new? i could use a fresh beginning, too . . . all of my regrets are nothing new.[…] i’m dying to breathe in these abundant skies.
hello, good morning, how ya been? yesterday left, my head kicked in. i never, never thought that i would fall like that, never knew that i could hurt this bad.
i’m learning to breathe, i’m learning to crawl […]
learning to breathe, switchfoot
I will be completely honest that I have been very much out of the groove since the beginning of September. At first, I blamed it on readjusting to the new routine of school. Then I was crazy busy, and blamed that. Then I went to California. And we all know what happened in California [and, unfortunatley, did not stay in California].
I’m not intending for this to be a bitchfest post. I’m intending it to be an accountability point. While it is one thing that two or three weeks ago, doing stairs was still really hard, I am slowly getting back to where I want to be. The fact that I haven’t been working out lately prior to the asthma exacerbation is nothing’s fault but my own. I am the one who makes those choices, and I have not been making those choices. So, it is going to be doubly hard to get back to doing what I know I need to be doing exercise-wise because I’ve probably already lost a fair amount of where I was at the beginning of September from simply not being intentional. Yes, I’ve been busy, and yes, recently I’ve been sick. The latter is a reason . . . the former is an excuse.
Since I lost my Fitbit [seriously. It was honestly super depressing when I discovered it was MIA. The people at Fitbit are awesome and are sending me a complimentary replacement], and am constantly in need of some kind of motivation, I joined MeYou Health’s Daily Challenge site–I’d love for you to join me! I receive simple challenges every day to motivate me towards just making one small choice that . . . when added up . . . can make a big difference. It also helps with that intentionality bit by asking a few questions to help evaluate your current wellness–I’m hovering at 80%, likely because of some nutrition and physical activity issues, and dipped down today because I have been feeling stressed this weekend (see also: Darwin paper). The questions are simple, but really make me realize how I am feeling about things, which is awesome.
I get things narrowed-down in a nice little screen like this, helping me to see what I need to work on. Emotional health dropped like 19 points I think just due to the stress factor. The physical health thing is quite obvious due to my state of physical activity and asthma lately.
The healthy behaviours bit, let us explore that a bit more:
Each domain can be outlined like this, giving some concrete ways of how to improve health in the determined area that might need some work. So, once again, this one is all about those little choices that add up . . . and the little choices that are dragging me down in some of the other domains adding up.
I know part of the exercise aversion is that I’m scared of two things, one being that I won’t feel good while doing it [which is basically a given at this point that it will be harder to breathe than usual] and two being that I’ll make myself sick again [which is, at this point, unlikely I would hope, but it comes with the package deal of having a wicked exacerbation, apparently]. The only way to crush those feelings though . . . is to try it.
Goals for the week:
i got my scars, i been to hell and back again. born for the blue skies, we’ll survive the rain. born for the sunrise, we’ll survive the pain.
we’re singing wait it’s not over now, we’ve been down but we’ve never been out . . .
we found a way out, the city takes everything it can. but outside the crowds, i can feel my lungs again. . .
dark horses, switchfoot
This is a Story from California, but it’s not going to become part of the Stories from California. Asthma is the reason I went to California, asthma was a big part of the story in California, but I want California to remain about more than asthma. I want it to remain to be about the stories, the change and the people. In the asthma story of the last four and a half years, it’s a significant event, but I wish with everything in me that I hadn’t had to deal with it in CA.
I’m still coming off of my post-California high two weeks later, which may have intensified after I started feeling better. As I am hopefully on the tail end of the recovery exactly two weeks after staring the prednisone, here’s the story of what the heck happened with my lungs in Cali.
It’s been a couple years since we sorted my inhalers out and finally found a really good balance of medications that keep my asthma in pretty decent control. I take three or four inhalers a day but am overall taking less medication than when I was taking less inhalers, can usually turn things around with a nebulizer treatment or two if my lungs get rough, and am really generally pretty good at predicting where my asthma’s going and how to spin it back on track rapidly. Viral infections, like in the majority of people with asthma, are by far my worst trigger, and I’m lucky in that I don’t deal with much in the way of associated allergies–my triggers are primarily intrinsic, meaning either things going on within my own body trigger it [like exercise or hormonal changes], or my symptoms are triggered by non-allergen things like chemicals, humidity and cold. Infections, as noted above, are also intrinsic triggers.
My first flight was pretty rough on the breathing. I attributed it to being in a cabin full of fragrance-y people [I’m pretty sensitive to fragrances] and a couple dogs [I am apparently mildly allergic to dogs, but I refuse to acknowledge this]. At 38,000 feet, one does not really have a ton of option to get away from what is around them, so I sufficed with being happy that i had a one-seat buffer between myself and my row-neighbour, turned towards the window, and used my inhaler a few times throughout the flight.
By the time I got to YVR, I was good to go, made a speedy jaunt through the airport, cleared customs and security, and found my gate with time to spare. Then, too much time to spare because my flight got delayed an hour and a half because of fog at SFO. I figured at this point that a combination of the plane environment and stress had triggered the flaring on the first flight, grabbed some Cinnabon, and eventually found myself in San Francisco feeling pretty good aside from the occasional [normal for me] coughing. All good.
Of course, it would have been too simple if things resolved there. It would have been too simple if the crazy flare would have happened when I was hanging out with Steve who would have been all over rocking his Respiratory Therapy skills on my respiratory situation [which he did an excellent job of doing by phone, however–so.happy I had him around, oh my goodness]. And it would have been too simple if I’d actually prepared properly for something to arise while I was in California. I brought my nebulizer and five vials of Ventolin because usually all it takes is one or two to kick anything I’ve got going on [I can neb every four hours if I’m sick, so realistically I should have packed more meds but really, I was convinced I’d be fine. Wrong.], and I forgot to bring the power cable to charge the neb compressor battery–a mistake I won’t make again any time soon. I hadn’t brought my peak flow meter, so I was flying on only how I perceived I was feeling/responding to the meds. All the nights I was in California I slept off and on, totalling four or five hours a night because of how I was feeling and using my inhaler anywhere from two to five times a night. When I start having nocturnal symptoms and actually waking up because of my asthma is when I know I’m in a bit of trouble.[Here’s the one where I give asthma The Finger again on Friday in Palo Alto . . . Yes, hi Mom. Just warning you. There’s a similar picture from Saturday morning].
On Friday morning, I finally woke up for real after several useless inhaler hits, and did a Ventolin/Atrovent breathing treatment. Boom, open lungs [thanks Steve!], good enough to walk to Stanford with Kim. Six hours later though, when the treatment wore off, the inhaler wasn’t cutting it again. I busted out everything in the arsenal in my backpack and even braved some Ventolin through the spacer [there is nothing better than being surrounded by a group of ePatients, by the way] and while it took the edge off, it wasn’t killing the cough or the tightness. My neb was back at the hotel and not exactly an option, and because of the lack of power cord I was wanting to [as I usually do] neb sparingly, which probably could not have been stupider seeing as my lungs were feeling worse than they have in the last two and a half years. By afternoon snack/break time [snacks are plentiful at Medicine-X] I’d talked with Steve and Morgan [another respiratory therapist] and threw back 50 milligrams of prednisone. Thank God that my medical team spans beyond my official medical people. [I also begrudgingly took the shuttle back to the hotel knowing the walk would not be a smart idea.]
As I’ve said before, prednisone is not something I like in the least. I fight it with everything in me, but at the point where I am three thousand kilometers from home, having the worst asthma exacerbation I’ve had in two and a half years [the last time I needed prednisone] and knowing I need to fly [and preferably be comfortable in the process] in two days, it was only with minor hesitance that I started taking the drug. My thought was I’d start at 50 mg, and instead of doing a straight-shot of 40 milligrams for 5 days like my prescription said [confessions, confessions], I’d start at 50 and rapidly taper off by 10 mg a day.
As stated in a previous post, having not taken prednisone in two and a half years [it was shortly after my nineteenth birthday when I brewed a respiratory infection for two weeks and didn’t realize–read: paying attention to my body fail], and that prednisone is notorious for crappy side effects, I had little idea of what I was getting myself into and what the steroids were going to do to my body. Whether it was starting off at 50 mg, the fact that I hadn’t taken it in 2.5 years or what I have no idea, but while my asthma turned around pretty significantly in 24 hours, the side effects hit me hard. On Saturday I was somewhat of a starving, thirsty, tearful mess because of the prednisone. But . . . I could breathe. In those moments, it felt worth it to be eating nearly everything in sight, worth it to be waking up to drink water [and thus go to the bathroom], and even worth it to be tearing up at every.freaking.thing. [By 72 hours later, I didn’t quite have the same feelings that breathing was worth it–maybe deep down.]
So, running on four- or five-hours of sleep at a busy conference with crazy asthma going on is not a recommended activity. I had a bunch of really beautiful people around me to help me through it emotionally. I honestly have no idea how I’d have gotten through the experience without them being there for me, especially having Carly there who knew first-hand how the prednisone side-effects go down made me feel so much better about the asthma/steroid stupidness.
Sunday after some craziness, steroid-induced hysteria and miscommunications, Steve got me back to the airport and I was feeling okay without a breathing treatment in me since I was responding to the inhalers again, so I figured I was on the up. I took 35 milligrams of prednisone in Vancouver airport with an iced coffee.
I’m unsure iced coffee is a recommended prednisone vehicle, but whatever. Like I said, you do what you have to do to keep healthy when all the situations surrounding being healthy are so not there. Is it obvious how exhausted I am at this point?
In Vancouver, my flight got delayed an hour and a half [this feels like the way there, I know]. My lungs were starting to act up again, I was tired, I hadn’t done a breathing treatment all day, and I had an exam to write the next day, and I just wanted to get home. At some point during the four-and-a-half hours I spent in Vancouver International Airport, I found myself in the entirely non-awesome situation of doing a breathing treatment in the bathroom. Both prednisone and bathroom nebbing are pretty strong testaments to how shitty I was breathing, because really, usually I hesitate to use my inhalers in the bathroom, never mind the neb. I don’t think I truly realized how sick I was until a couple days after I was home. With a neb treatment deep in my lungs, I felt a bit more human and ineffectively worked at some Darwin and had friendly conversation with Woman from Prince George and Man Going to Calgary who were also stuck in the airport since WestJet’s flight map system was down. I was also realizing that writing an exam the next morning was going to be bleak if I still couldn’t breathe properly and was still effed up from the prednisone. I wasn’t exactly giving my lungs a chance to get better aside from pushing them full of medicine, because I really had little choice at that point.
I tried to get some sleep on the flight home, but essentially ended up listening to Matthew Good the whole time and spacing out the window. Prednisone is a giant catch-22 in which you’re exhausted from whatever you’re taking it for, yet it keeps you wired [don’t blame the iced coffee, that stuff has no effect on me. See also: delicious.] and makes it hard to get any sort of legitimate rest so that your body can recover. What fun. Odette by Matthew Good got me through yet another long span of hours of asthma:
I look tired but I, I feel wired and my body hums like it’s coming undone.
By the time my flight landed at home at 12:30 AM, I was so burned out. All I wanted to do was go to bed, and at that point I couldn’t even predict how I’d feel the next day. If the steroids and the asthma weren’t in the picture, things would have looked very different. I’d have spent more time studying because I’d have been able to focus my energy on the exams ahead and not simply making it home.
By 8:30 the next morning, I was an exhausted heap in the doctor’s office getting a quick assessment, told to keep doing what I was doing and taper off the steroids gradually down to 5 or 10 milligrams [which I had every intention of doing anyways]. My emotions were almost more screwed up than my lungs at this point [thank you prednisone for both], and I found myself somewhat tearfully accepting the instructions to go get a doctors’ note so I could go home and recover and not go to school and write an exam. Monday I bumped back up to 40 mg of prednisone because I was feeling worse than I had on Sunday thanks to the crazy travel day, then tore it down for the rest of the week eager to get off of the shit.
At this point, it seemed like an unfair toss-up. I could not breathe well and feel like shit and function, or I could breathe well and feel like shit from the prednisone and not function. Breathing, obviously, won out, and with a lot of snacks and patience towards myself and the emotional side effects [read: randomly tearing up in social psychology, the cafeteria and the university bathroom? Yeah, did that.]. I had intended to to be at work last Tuesday, I was back this past Tuesday. I am now those statistics about missed work days due to asthma. In the last three years prior to this, I had missed two days of work because of asthma [or, being sick in general, made worse by the asthma]. This in part was due to the asthma, in part due to the steroid side-effects, and in part that prednisone screws up your immunity so catching anything would not be a good scene. I had intention to show up to anatomy lab on Wednesday and ended up sleeping through it at home. I then planned to go to anatomy lab on Thursday but I got the time wrong and showed up as lab was ending, not starting so I missed making-up the quiz because I was sleeping on the floor of the university. I think after waking up from my 45-minute nap for the second day in a row on Thursday was when i really realized how sick I must have been and how much of a beating my body was getting from this crazy exacerbation.
Things turned around, but not as rapidly as I anticipated to be fully better–as I write this over a week later, I’m still not fully better. Sunday I went to the driving range. I am not a golfer, I do not claim to be a golfer, and I think I have never set foot on a driving range before. The first few rounds of balls went fine, but after about ten shots I was getting short of breath just hitting four or five balls over the edge and needing to take a break. Definitely not normal for me and not expected. Steve and Morgan told me that it was likely I’d have some rebounding following the steroids, and Steve reminded me it might be awhile before I could exert myself without getting short of breath [he is always right, I don’t know why I doubted him this time] and things could take longer than anticipated to fully get back to my normal. Still, getting out legitimately for the first time since coming home [read: the only place I’ve been other than the indoor driving range in the last week has been the airport, the doctor, and school] was awesome. Because the prednisone is such a powerful anti-inflammatory and is still having an effect on me, the inhalers are working extremely well at this point, so I hope that things stay like this for awhile. I’m not even close to being able to work out again, but I’m hoping I can start working up to it by the end of next week. I had to reschedule two exams and a lab quiz, so I’ve now dealt with the insanity that is truly mixing the asthma thing with the school thing–usually I am pretty good at making them non-interactive, save for the time I had a slight respiratory situation in Teaching Games for Understanding.
There’s no moral to this story. I learned that I always need to prepare for the worst and hope for the best [the hard way], I learned that even when I think things are going to be fine that asthma, or any other chronic disease, can still be extremely unpredictable even when I think I am in good control. I learned that as much as I hate the prednisone, and as much as I hate it even more now, sometimes it is a necessary evil. I learned that just because I usually only need a couple nebs to turn something around doesn’t mean that is always the case, especially going somewhere I haven’t been before and being three thousand kilometers away from home and my asthma care team. I learned that as much as I hate them sometimes, the nebulizer and the prednisone are powerful tools in my arsenal–underscoring the importance of bringing them with me when I travel. I’ve carried prednisone when I travel for a couple years, but it’s never been necessary but I am so, so thankful I had it or else I would have been completely miserable.
And I learned that, including my friends and even my instructors and profs at school (two of whom who simply rescheduled my tests/quizzes without even looking at my doctors note) I have, as I’ve said before, a bunch of really awesome people in my life who will stand by me through the good and bad. Special thanks to Kim for being awesome, supportive and making me feel totally normal through it all, to Carly for sharing in the understanding of being “‘roided out”, to Morgan for her advice, my boss for being amazingly understanding about the whole thing [and turning the tides and basically telling me I needed to not come in last Friday] . . . and finally, to Epic Steve for being my personal respiratory therapist while in California–I have no idea what I would have done without him checking in with me throughout the days I was at Stanford, helping me figure out what to do next, and sticking with me through the whole crazy experience.
And asthma or not . . . I wouldn’t trade that, wouldn’t trade those beautiful people, for the world.