hold your breath to breathe

learning, lungs and life — one breath at a time

moving on: the journey continues

When I started this blog late in 2008, I never imagined the journey that it would have led me on.  I’ve virtually met dozens of amazing people with asthma or who are parents of kids with asthma, some of whom have changed my life.  I’ve received hundreds of e-mails, had an opportunity to make videos focused on asthma and wellness [and get paid for it!], and exchanged thousands of tweets with the very people who made this blog worth writing.

As I’ve lived with asthma, I’ve learned with asthma.  And I’ve now reached a point where I’ve learned about as much as I can about my own lungs, reached a point where my asthma has improved enough that I don’t have to think about it constantly.  I’ve also reached a point where my asthma journey is becoming less about me as this blog began, and more about the community of people with asthma, who like me, are warriors against this disease day in and day out.

Reaching that point where I feel I need to reach more to people with and without asthma had me reconsidering exactly how I was blogging.  And the thing is, asthma, yes, is a part of my life.  But it intermingles with everything else in my life, too.  And I feel that that is how this story needs to be told.

So, my journey is moving on, moving forward.  Venture over to my new blog at kerriontheprairies.com and tag along as I continue this story — the story where my asthma is focused on only as a part of the story, not the whole story.

Thank you to everyone who has contributed to my asthma journey so far.  I have been so blessed by the encouragement, compassion and, most importantly, friendship over the last two and a half years.

Breathe easy and live out loud!

help maintain funding for US asthma research!

This morning, Steve began a petition to help maintain funding for asthma research in the US.

Logo1

Click on the picture above to learn more and sign to help move this issue forward!

i’ve ONLY been on a similar med regime to this for six-plus MONTHS . . .

So tonight I went and had a chat with my friendly local Shoppers Drug Mart pharmacist and refilled the necessary medications for heading off to camp [aka all of them].  I then called in again when I got home because I would rather not have to take all my med boxes to camp and just asked for them to put labels on all my inhalers individually.  Thanks Shoppers.  LY/MI.

So then five minutes later I get a call “Hi Kerri, this is Tracy at Shoppers.  Now, I was looking at your prescriptions” [that I have been on for, oh, six months?] “and realized that you’re on both Symbicort and Qvar.  Now, these medications work similarly and . . .”

“Yes.  I’m supposed to be on both of them.  We had my Symbicort way increased and my doctors figured that it was better to just bump up my steroid and be able to lower my Symbicort than it was to be on ridiculous amounts of Symbicort.”

“So you know they work similarly then?”

“Uh yeah.  My doctors weren’t satisfied with my level of control on JUST Symbicort, so we added Pulmicort and then swapped it to Qvar.  We got it, no biggie.”

 

Now, I just wonder.  Their computer system is supposed to make these matches about interactions immediately . . . How was this overlooked for so long?  Not that it’s a big deal in THIS case, but I wonder about others.

need to get back on track

I haven’t posted in two weeks.  Granted, I spent the majority of last week without proper WiFi, but I kind of suck.  I didn’t even post my 12 of 12 here last week, though it’s on my other blog.

It’s evident that this blog is taking a back seat.  I’m okay with that at this point, because I don’t want to be writing boring posts like this all the time about how I’m neglecting this blog.  If it’s run it’s course, it’s run it’s course.  This blog has played a big part in my asthma journey the last three and a half years, and I am grateful to everyone who has been a part of this story.  Something I thought I’d never keep up with, that nobody would ever read, has made me friends around the world.  I’ve been writing here for the better part of two and a half years, and has been a huge part of getting to where I am with my asthma, and with understanding how to live with my asthma.  It’s something that I think was necessary, but maybe no longer is.  It doesn’t feel, you know, releasing to post here anymore, more like I feel that I’m forcing it.  Writing’s always just happened for me, and to have to force it . . . no bueno, ya know?

I’m not saying goodbye here just yet.  I am reformulating what I’m doing with blogging in my head, and I like how it’s shaping up, but I just need the time, the patience, the resources to get it off the ground.  Stay tuned for that.

I haven’t had a legitimate workout in . . . effing forever.  I don’t know what to do about this, to be honest.  I need to go back to school and get on a routine that is not just work/weekend/work/weekend, etc. going on.  I miss school actually, with my motivating kinesiology classmates full of water bottles and gym bags and sweatpants.

I’m halfway through work.  It’ll be a quick two weeks till our work summer ends, then I’m off doing inclusion at camp for a week and then have a few weeks off before going back to school.  Not much new to say, really, but things are busy and I’m loving it.

 

Ridiculous.

#lwac 2 – work/school and asthma

Hi all!

Quick note that I’ll be moderating the second Living with Asthma Chat tomorrow on Twitter at 8 PM CT!

We’ll be discussing work/school and balancing that along with asthma.  Follow the hashtag #lwac [throw it in Twitter search or TweetDeck/TweetChat search and follow @LWAchat to join us!]

 

Speaking of work, I’m off to the water park tomorrow.  Once again, my first field trip of a daycare job is a water park.  Otherwise, I have 19 days of summer left at the daycare [we’re only open July!], followed by doing inclusion/one-on-one at CAMP, a week or three off, possibly another day camp with the same kiddo andddd a ROAD TRIP!  I’m lookin’ at you, Land of Payday Bars!]

Also, what sort of job do I have, right?  Colouring, water parks, an amusement park on Thursday, zoo and soccer skills day next week . . . We were supposed to do Fencing today, except the dude totally didn’t show up, so not impressed.

I was really being all “DUDE! What celebrates American independence more than, you know, giving Canadian children swords to battle one another with in celebration of America’s independence!”

Yeah, I hope that still happens this summer!  Kids wanted to duel me, I am SO in.

 

Also the cold is gone, though I’m still coughing a bit as per usual and I’m still a little stuffed up, so I have no idea.  I see the CSAN doctor the last week in July, and who knows what will happen.

 

Also work gave us whistles.  Meaning my coworkers and I get all in cahoots about it and all blow our whistles loudly at the same time and scare the crap outta the kids.  It’s good times.  (See also, my coworkers are awesome).

quick turnaround win

While I’m no means back to 100% yet, can I just say i am grateful that my allergist gave me an actual PLAN to follow when I’m sick?

My yellow zone plan has me increase my Symbicort to 2 puffs twice a day when I start getting sick.  Because of my whole flare caused by the oven cleaning incident on Monday, I increased the Symbicort even before starting to feel like my lungs were feeling this cold, which probably helped some.  Wednesday was when I started feeling like either I was having ridiculous allergies [not likely in my case] or getting sick, so I threw back an Aerius [antihistamine] after doing a breathing treatment and started throwing back Ventolin every four hours as per my plan and actually doing Atrovent four times a day as opposed to as-needed.

Which was to continue for the next 72 hours, so it did.  I started doing half nebs awhile ago [5 mg of Ventolin is effing ridiculous, and further proof that my primary doc maybe has no idea what she’s doing] so that was much more tolerable, so I was doing those morning and about an hour and a half before going to bed so that the jitteriness died down enough to let me sleep along with a Benadryl, partially to knock me out, which it didn’t used to do, partially to de-gunk my face or whatever.  WHAT?  I apparently don’t OWN cold medicine, okay?  I just throw allergy medicine at these virus-y things and it kind of works.

Anyway, yesterday morning I woke up with yet another peak flow in the 60s.  Even after throwing back all my meds, just walking around the grocery store made me feel fairly short of breath — like I’d just done a ridiculous workout — I had to tell my mom to slow down which was ridiculous. For real.  What is that?  But by the evening I was able to skip the bedtime neb and just take the inhaler, and woke up in the . . .

GREEN ZONE.

YEAAH!  Never mind I have been coughing all day, and never mind that I sang for 35 minutes in church and then spent the rest of the service coughing and hunched over and contemplating weaving through the aisle to the bathroom to go take my inhaler.  Never mind that.  I have only been coughing all day, which is better than other things.  I’ve basically still been taking my inhaler every four-ish hours today anyway, but I think I am having a quick turnaround win here.

So, yeah.  I work a full day Wednesday, 8-4.  So I very much hope that the coughing is mostly or ALL done by then.  You know.  Because it is tres annoying.

nebs and nutella time

So since late last week my coworker has been telling us she was pretty sure she had allergies [and that she was drugged and not responsible for her actions ;-)].

Monday was my encounter with the mother oven cleaning and filling the house with yuckiness, so that’s when I kinda started flaring.  Tuesday was better but still had some residual symptoms.  Yesterday was better than Monday, but I felt like I was having allergy symptoms and coughing more than usual.  Still didn’t think much of it.

Then my coworker dropped the bomb and said she was sick.  I diligently wash my hands two to four times a shift [which is two to three-and-a-half hours long] regardless because I don’t want to get sick.  She’s committed and basically refuses to take sick days.  But I mean, since I’m not the only one who’s sick, I’m gonna be going in today, too.

Oh and part of it may be that my mom was sick, too.

Anyways, guess it’s time for nebs and Nutella to knock this thing out, eh?  Increased my Symbicort back to 2 puffs twice a day on Monday, so that step’s done, so since I know it’s a cold now I’m onto Ventolin Q4.  Started the day [at 11 am] with a 68% PF and a neb and am feeling pretty okay now [my peak flow is up to 100%, so I should be breathin’ pretty easy].  Augh.

At least it should be over with by the time I start doing full-time on July 3rd, right?

Nutella = the cure.  Fo’ real.

connecting the dots.

The thing about living with asthma, or any other chronic illness, is that there’s really nobody to blame for anything.  It sucks, and it’s like playing dot-to-dot and having to connect things together to get the full picture except someone stopped numbering partway through and part of it makes sense and part of it still ends up looking like a mess no matter how hard you try to make sense of it all.

I’m lucky that for the first time in the last three years that my asthma has been taking a little more of a backseat.  Spring is usually fairly okay for me because I don’t have a lot of the associated allergy issues affecting my asthma, but things come up that just shoot all of the hard work in being compliant with my medicine and all that down completely.  With winter behind me for another five or so months and the Qvar in me, I’ve been doing pretty well — save for the continued EIA conundrum.  Either way, I’m excited about how far I’ve come.

Of course, things still trip me up when I don’t expect it.

I woke up feeling fine.  At about 10:30 my mom started cleaning the oven.  I was sitting in the kitchen and after she started told me I might want to move.  I was breathing fine, but moved downstairs to the living room — still fully open-air with the kitchen, but I thought things were okay.  So I moved down, and THEN started coughing.  And coughing.  Took my inhaler and finally moved down to the basement, which didn’t help reverse the damage that had already been done.

Long story short, the great weekend where I didn’t need my puffer at all?  Bam, gone.  I’m sure I’ve used more Ventolin today than I have in the last two weeks, having issues roping this one in.  Bumped up my Symbicort.  A kid at work caught onto my barely shaky hands again.

To say I’m frustrated is an understatement.  That one thing can trip me up for who knows how long (hopefully not very).

But even more, I hate that I lived so, so, so many days breathing exactly like this or worse not even a year ago.  I hate that there are no simple answers.  I hate that people don’t really see what living with asthma is is really like for so many people.

And I hate that there’s only so much I can do to change any of it.

But that doesn’t mean I stop trying to connect the dots between as many people as possible so that we can ignite change together.

gimme fuel, gimme fire, gimme that which i desire, ooh yeaah.

Metallica, anybody?

 

I went to the gym today, and it was awesome.  Treadmill warm-up, bike, elliptical, treadmill cool-down.  That plus my daily jaunts to the bus stop and et cetera burned 446ish calories.

It’s said that cardio workouts kick up your metabolism for 4-6 hours after a workout. At least, that’s what I learned in school.  So if my workout ended at noon . . .

why am I still

freaking.  starving.

at 11 pm?

 

Oh yeah, ’cause I don’t fuel properly at all.  Silly body, why do you need food?  [Also likely does not help that i left my water bottle in the bathroom after I worked out.]

So basically I have been eating non-stop since getting home from work at 5:30.  Before work I had a bagel and light cream cheese and iced coffee from Tim’s and a popsicle.  Had fruit snacks and cookies at work.  And water.

Got home, had cereal and a pear.  And then Doritos, because they were there.  And then ice cream.  [Yeah, I’m good at this.  I was trying for the fill-me-fast method which of course always doesn’t work].  Then I moved onto half of a Nutella sandwich.  Then cheese, then regular milk, then chocolate milk.

 

The good news is, is that I work at 7 tomorrow so I am going to bed and hoping that my body finally decides after six hours of eating that it’s not hungry anymore ;-).  Seriously, why did he not teach us about this being freaking starving post-workout thing in intro kinesiology and what to do about it? ;-)  Guess that’s why athletes can eat so much more than regular people.

Okay, off to bed before I eat the rest of the kitchen.

first asthma twitter chat june 21 8 PM CST– #lwac

I’ve expressed interest in starting an asthma chat on Twitter.
Simply, I’m calling this one Living With Asthma Chat, or LWAC.

I’m hoping to try one out next Tuesday, June 21st at 8-9 PM CST if there’s enough interest generated [we’ll say at least ten people].

Here’s what I need you to do to help me out:
-Make a Twitter account if you don’t already have one — https://twitter.com/?lang=en
–Please get familiar with Twitter before the chat. I can help you out via e-mail. You will need to know how to send “at replies” and use the #lwac hash tag. It’s not as scary as it sounds!

-Follow @LWAChat on Twitter at http://twitter.com/LWAChat
-I’ll be participating in the chat on my personal account at http://twitter.com/__kerri

DISCUSSION IDEAS
-Please submit discussion themes to lwachat@gmail.com or my personal e-mail address with the subject LWAC.

If you have specific discussion topics within these themes, please outline them in the e-mail.

EXAMPLE TOPIC: ASTHMA ADVOCACY
SPECIFIC TOPICS: 
~What has your experience been with your region’s official asthma advocacy organization?
~What would you like to see done differently in organization-facilitated advocacy?
~What has your personal involvement in asthma advocacy been like?
~Now that you’ve seen what others have been up to re: advocacy, what new ideas would you like to try?

I’d like to have four specific questions pertaining to the topic per session.

Much like the other chats I’ve been involved in, we’d begin with introductions at 8 PM CST for about five minutes, spend ten-ish minutes per topic, and then have some time for closing at the end, and be wrapped up by 9PM CST. [Sorry to our friends across the pond, feel free to get up early and join us ;)].

I’ve also set up a blog that may or may not be used to facilitate communication about chat topics. Feel free to check it out at http://lwachat.wordpress.com/ or just use the e-mail address[es] above.

PLEASE contact me ASAP via the SARP group, e-mail or the Breathinstephen asthma forums if you’re interested in participating, have questions or have ideas to contribute! 

Additionally, if this gets rolling, how often would you like these chats to occur? Weekly, biweekly, monthly?

Let me know your thoughts!

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