asthma

“some days all i do is watch the sky”

• by kerri

Some days, my day looks like this

running

But my night can look like this

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Maybe it’s because I ran around filming a video. Or inhaled a bunch of smoke all day drifting around with the breeze. Or sat around a campfire at lunch. Or maybe there’s seemingly no reason at all.

For me, the asthma monster-under-the-bed, I am lucky, doesn’t come around often. Maybe once a month, maybe less than that.  Most of the time, unless I’m really sick, it lurks from inside me slowly–waking up and not realizing my lungs are the reason why, usually wandering to the bathroom and back before laying down to realize “Hey, I’m pretty short of breath over here.”

Sometimes a couple puffs of Ventolin is all it takes for me to drift back to sleep.  Other times like the other night, I slip into some sort of autopilot while feeling a heaviness settled in my lungs: two puffs, fifteen minutes. two puffs, fifteen minutes, two puffs, fifteen minutes. Last night, it was after round three, or six hits, I fell asleep again.

The next day, still, can look like this (…okay, a little tired I guess!)

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It’s a mind game. It’s thinking I’m fine and when I’m least on my guard, the previous day somehow grabs onto me and shakes me back into it–in one of the ways I least want to be inside it.

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

i think i, i could use a little break — but today was a good day.

watch the sky, something corporate

advocacy / asthma / badassmatics / guest posts

q&a with brandon vosika: shake well before use

• by kerri

Creative awareness: I am all about it.

Elisheva sent me a link to a Kickstarter project the other day. I have never backed a project so quickly in my life (I couldn’t remember my password, which caused issues but ALL BECAME WELL). To say that this project intrigued was an understatement. Essentially, I immediately was trying to figure out how to get in touch with the creator of this project so we could talk more about it.

Brandon Vosika is in the process of creating an art book called Shake Well Before Use: A Book of Paintings About Asthma. Each book will be professionally printed and then hand-bound by Brandon, resulting in a really special and unique compilation of original art focused on asthma.  Brandon and I are only a couple years apart in age, and I was stoked to find someone my age also pursuing asthma advocacy in a creative way. Within 12 hours of finding out about the Kickstarter, Brandon and I threw multiple e-mails back and forth, and put this Q&A post together so that more people can learn about his project.

Thanks, Brandon, for jumping on board with this!

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Shake Well Before Use – Art by Brandon Vosika.

Kerri: Hi Brandon, thanks for collaborating on this with me! So, because Shake Well is an art project, I guess we’d better start with the basics: when did you get involved in art? What started that part of the journey for you?
Brandon: I started painting very silly things about 8 or 9 years ago, in high school. From then to now I’ve taken several long and short hiatuses to record music or do other creative sorts of things like that but it’s always come back to painting. The start of this journey of my art came in a rather cliche way actually… I was quite sad and didn’t know what to do with myself. So I decided to start painting. This is the case with many people, I know. The only difference for me what they I never stopped and was able to grow and mature and my silly sad art grew and matured with me (thank god) because now I don’t find what I do sad anymore. Maybe a little silly still… I don’t know. I like my work.

KM: I love when things that start out of places of desperation truly come to be big markers of personal growth (growth is a big theme around here, too). The other component of Shake Well is obviously the asthma. How does asthma play into your life? What’s your asthma story?
BV: Well, I’ve had asthma for 22 years, I’m 24 years old now. My mom and dad separately tell me little horror stories about my wheezing and doing constant nebulizer treatments and having to go to the hospital and whatnot when I was a baby. I’m so glad they’re good parents! But yeah, it’s an every day thing for me.. I’ve always got an inhaler with me wherever I go. Thankfully I don’t have to use it all of the time but it is something that I need at least once a day. It’s Advair before I go to bed and depending on how I feel when I wake up, maybe in the morning. You learn to make allowances for yourself and learn what you need to do for your particular case. I have allergies as well so I take claritin, allegra or zyrtec most days. Vacuuming often, air purifier, keeping things clean, trying to be active but not to over do it (I have “sports induced” asthma) – that’s a big part of my life.
 

KM: I think there is a lot to be said about the balancing act that can be asthma and everyday life–and, I think

Our Lungs – Art by Brandon Vosika.

being a young adult only complicates things as per usual!  To connect the asthma to the art . . . What made you decide to create Shake Well Before Use?
BV: I decided to do the paintings about asthma after I had a bad attack and was forced to visit the ER. My week or so of recovery was a good time for the art to form. I realized that almost no one was making art about a disease I’ve had all my life and that over 300 million other people have around the world.. I decided to try and change that.

KM: That’s fantastic. It also alludes to something I often mention (do we share a brain and not know it? :)) in that “10% of the population has this disease . . . but where are they?”. Sometimes I feel like nobody is really doing anything about asthma–that’s why projects like Shake Well that literally paint asthma in a different light are so fantastic.
Aside from watercolour, what other mediums do you like using? Are you into any other types of art other than visual arts?
BV: Watercolor with pen or pencil is the medium I use the most but second to that would be mixed media collage. Using anything from sawed/sanded/painted wood to antique magazine or paper clippings to paint and ink. I also enjoy a little sculpting, recording music, writing and general crafting.
Film and music are two definite passions of mine. I work in a record/movie store for a day job. I love new stuff, older movies, strange film bits.. I wont go into it but cinema is gorgeous. Music is as well obviously. Nearly every young person these days seems to live for music though so that seems boring even if it is the case. I love music!
KM: Completely true on the music thing–I’ve definitely encountered that too! Of course, there’s a big difference between simply being “into” music, and being a musician and creating music! What other things do you enjoy doing in your spare time?
BV: As life goes by you find new things to spend your time doing. you leave the old behind and start with the new. It’s the things that are always with you that really matter, I think. I spend my time painting, appreciating film and music, hanging out with good friends and trying to travel a little. Oh and time is spent helping customers at work (where I also get to hang out with friends all day). KM: Sounds like a great way to live :]. I have a similar work situation in which work is almost as fun as not work! Wrapping up with a little philosophizing here, what’s your favourite quote?
BV: “Life is great. Without it, you’d be dead.” -From the movie Gummo.

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Images used with permission from Brandon.

Want to learn more about Brandon’s project and give him a hand? You can back his Kickstarter project for as little as $1, and receive cool incentives from $5–at as low as $20 you’ll receive a copy of the art book upon completion–I am very excited to receive mine!

Learn more about the project by visiting the Kickstarter page.

advocacy / asthma / badassmatics / friends / health + fitness / life

perspectives on asthma: it’s a six-letter catch-all

• by kerri

To wrap up Asthma Awareness Month, I thought it would be interesting to vlog a day with asthma to give an idea of what things can be like. Though I’ve been sharing guest posts from my friends with asthma, they capture the big picture but not the finer details of the day to day intricacies of living with a chronic disease.

Asthma, though, can look immensely different from day to day and from person to person. I am extremely thankful for the willingness of some of my friends to rise up and join me in sharing what a day in their lives with asthma looks like (and, on very short notice)–and of course, if anybody else wants to contribute, by all means, please fire a video off to me!

Super special thanks to Steve for getting a video off to me on really short notice!

Steve and I filmed these in an overlapping block of time, so we really had no idea what the other person was doing. However, our perspectives really overlap in certain parts of these videos, which just blew my mind. Steve has really severe asthma, but if you know any part of his story, you’ll know that he truly rolls with it, does what he has to, and lives a really vibrant and active life regardless of his asthma.

However, despite “asthma” sharing a common name, and Steve and I having common passions . . . you will see that Steve’s day is dramatically different from mine.

(By the way, I’m convinced Steve is a pro video blogger in disguise. And I think he needs to do this more often. Also, Steve, I like your hoodie.)

Asthma: it’s a six letter catch-all.

It can have a host of symptoms from coughing, to shortness of breath, to wheezing, to chest tightness.

It can be asymptomatic, or relatively mild, or severe enough to require treatment in the intensive care unit.

It can be treated with inhalers and nebs, pills and injections.

It can affect somebody for two minutes a year, or twenty four hours a day.

It can be anything but simple, and there is no such thing as typical.

But most importantly . . .

It can be owned,

it can be lived with

. . . and it can be thrived with.

badassmatics / guest posts / health + fitness / health advocacy / life

dia’s asthma story: square peg in a round hole

• by kerri

Despite the fact that my online friends and I often live thousands of kilometers apart, sometimes we are lucky enough to meet one another in person when the right series of events occurs. Back in the Fall of 2011, Dia (who I really hardly knew at the time!) happened to be in town for work . . . and then we clicked so much I ended up skipping Issues in Sport to continue hanging out with her in Second Cup due to the effects of #kinwin (kinesiologists: we get it).

On occasion, Dia blogs at Respiratory Situation. Today, I’m stealing her and she’s sharing her story here! (And, if you have any questions on the science-y things, I’m going to have to refer you to her!)

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A big thank you to Kerri for asking me to guest post on her blog

Happy Asthma Awareness Month everyone!

Here is a bit about my asthma story; I had what has been described as childhood asthma but the experts have debated that it might have really been some kind of bronchiolitis. I was asymptomatic for decades until I got a cold, which became pneumonia in 2008 and things were never the same. My family doc mentioned that my “asthma” was exacerbated and I remarked ”…but I have not had symptoms in decades” how can this be asthma?” That question began a journey of  tests, doctors, meds, more tests, more doctors ( world  renowned docs), 2 counties , different  meds, participating in  research, novel treatments, becoming a more informed patient and  developing an excellent working relationship with my doctors.

The heterogeneity of asthma

The asthma umbrella incorporates tons of different shapes, sizes, and abnormalities…etc. We are not all round, trying to fit into a round hole.   I know for sure that I am a SQUARE! My respirologist once told me that none of his patients were the same.  They all have variances from each other. This is one of the things that makes asthma so complex.  Some patients are coughers, wheezers, produce sputum and others don’t.  Some respond to certain kinds of treatment and others respond to something else. ( There are lots of journal articles on asthma phenotypes, endotypes and personalized medicine , you can also speak to your Respirologist about this topic.)

My “Square Peg was finally identified after wading through a sea of “ its just asthma, use your rescue inhaler and we don’t really have any ideas, why you are not getting better so, lets just keep you on prednisone.” Btw:   I am yet to be convinced of the wonderfulness of long term prednisone use, much to the chagrin of my Respirologist , even though we are trying everything to get me off that posion.

My Peg involves a significant eosinophilic component, mucous hyperseacretion and severe airway hyperresponsiveness. There are limited options for my specific abnormalities.  Name the inhaler, add on therapy and I have probably tried it.  I have also tried a few out of the box therapies with mixed success. It does get discouraging but you just have to keep pushing forward. This fall was the most ill that I have been in nearly 2 years and it was scary, but you get through it.

What to do as a “Square Peg”?

Arm yourself with knowledge, read everything you can, ask questions, be willing to try something different, participate in research, be pushy but also be respectful of your care team (they are people too and are often just as frustrated as you are), be an ACTIVE participant in your care. Keep pushing for better treatment, better awareness and find/develop a network of asthma peeps to help you through the journey.

A network of Asthma Peeps

There are times when asthma and lung disease suck beyond belief. When you don’t bounce back, despite all the treatment under the sun, when people don’t understand what you are doing, is the best you can with what you’ve got. Be responsible for yourself, change your perspective and be willing to try.

Remember that people are cheering for you to be successful (get better, push new limits…etc) I encourage you to find a group of people who understand (speak to your doc about speaking with a therapist who deals with chronic illness or directing you to a support group). There are also online communities that are awesome and you can meet some wonderful people (Like Kerri!) through them but you should be willing to be an active participant in that relationship.  Why not start a grassroots based support network?

To my support network and asthma/lung team, THANK YOU for everything.

You can find me at http://respiratorysituation.wordpress.com

Resources that I find helpful (Of course nothing can replace human contact!).

Badassmatics on Google+

PURR at FIRH , Pulmonary Research Registry 

Severe Asthma Research Program

http://www.amazon.com/Fishmans-Pulmonary-Diseases-Disorders-Set/dp/0071457399

http://www.ncbi.nlm.nih.gov/pubmed

The Asthma Society of Canada

asthma / guest posts

breanna’s asthma story: give and take

• by kerri

A couple months ago, I connected with Breanna through the Asthma Society of Canada’s Team Asthma Facebook page. Breanna has severe asthma, and is looking into bronchial thermoplasty as a potential treatment option–today, she’s sharing a bit of her asthma story here for asthma awareness month. Thanks Breanna!

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I am a 28 year old female and was diagnosed with mild asthma at the age of 19, to be honest never really thought much of it. I carried an inhaler when I remembered and used it as needed. In November of 2009 suddenly my asthma became severe. I realized that I had taken it for granted, started a controller inhaler and singulair. Unfortunately things didn’t improve and I started seeing specialist. I am currently on my third specialist, first one being an internalist and the last two being respirologists.

Every visit seemed to bring on new medication, new tests and frustrations. I went from going to emergency every 2 weeks to once a month and currently about every 6 weeks I have landed in emergency. I have been intubated, triedc-pap and many medications. Currently I am awaiting an appointment in Hamilton to see about possible bronchial thermoplasty. I have very atypical asthma, I cough continually and do not wheeze, however all tests point to asthma.

Asthma has taken so much from me, I am currently on disability from my job, it has taken some of my friends, some of the sports I played and activities I loved such as camping. However asthma has given me so much, I found out who will support me through all the frustrations and doctors appointment. It has also given me a new appreciation for those who strugglewith chronic illness.

I have made new friends and a new support system. As I am not working I am able to help friends out when I am feeling well and also slowly exercise to try to build up my lung tolerance. I am also able to take some university courses through distance education.

Asthma is a difficult disease it takes and gives and not many people understand the severity of the disease. On World Asthma Day I hope people take a chance to learn and educate themselves about the severity of the disease. It is even important to learn about triggers, I react strongly to scents, chemicals, smoke and weather changes. If you see me covering my mouth and hurrying away from where I am, please look at the amount of scent you are wearing.

Asthma is now a part of who I am but it does not rule my life.

–Breanna Harms