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.

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

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

My friend Elisheva is now on her third guest post on blogs I’ve written in the past, and her second here on Kerri on the Prairies!  Elisheva and I connected several years ago because of our asthma, and I think she is my furthest-distance long distance friend, living in Jerusalem, Israel.  Aside from being able to talk about our asthma, I love how much I learn about not only Israel, but the rest of the world from knowing her, as well as simply seeing how she has progressed through a variety of different life stages in the three-and-a-half (or more?) years since we’ve known one another!  And a fun fact . . . Elisheva is also known for hosting World Asthma Day (WAD) parties, something I think is extremely cool–thanks for guest posting again, Elisheva!

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Kerri asked me to do a WAD themed guest post.  And I love Kerri’s blog, so how could I say no?

I first heard of WAD… uh… maybe 6-7 years ago from a friend who loves checking what  special day each day is – cuz every day is something if you check.  Said friend is asthmatic too (tho since she’s been an adult, it’s become much more mild and she only needs the occasional Ventolin – lucky!  Although she also has deathly food allergies – not so lucky.), so we organized a party.  And since then, every year we’ve had a party.  This friend had a baby a couple of months ago and I’ve been busy with my own stuff (I just got back from a week in the Czech Republic – Fun!), so I think this year won’t be that exciting – tho there will definitely be some sort of party!  You can read about the one from 2011here (from back when I blogged).  Was pretty rockin’.
 
So… WAD.  I love WAD.  I love this time of year because the weather is generally nice and there are a whole slew of Jewish and Israeli holidays that are my favorites and also there’s Eurovision and Britain’s Got Talent.  (I’m easy to please.)  But WAD is great because on that day, asthma isn’t something that makes me weird and different – it’s something that makes me special.  And while it’s supposed to be about awareness, I just celebrate it.  Get together with friends who have also been on inhalers their whole lives or most of their lives or only recently or not at all and eat food and play games.  I love food.  And games.  I still have to come up with one by Tuesday.  Hm…
 
I actually have a lot of asthmatics in my life.  I tend to attract them for some reason.  And I come from a family of crappy lung gened people.  My mom, my brothers, my aunt and several of my cousins are asthmatic too.  In terms of living with it and in terms of WAD, it’s all about how you look at it, I think.  I keep inviting my brothers to WAD.  Every year.  One (asthmatic since age 16 or so) lives in the US now, so he can’t come, but he likes the idea.  The other (asthmatic since birth) thinks it’s lame and that I’m weird and keeps asking me why he should celebrate his lung disease.  I tell him (and anyone else who asks) that’s it’s not celebrating the disease itself.  First off, I love parties.  Any opportunity for a party is great.  I also love WAD because it’s turning something negative about me and making it almost positive.  Hanging out with other people who know what it’s like and share my experiences and who can make fun of it with me.  And eat food.  And play games.  Yay WAD!
 
Kerri marked her fifth asthmaversary last week.  I have no clue when mine is — just that it was at some point during fifth or sixth grade.  In Jewish culture, all trees have the same birthday – 15 Shvat.  Doesn’t matter when in the year you planted your tree.  On that date, all trees become a year older.  I hear in some cultures it’s like that for people too.  So I figure WAD is as good a time as any to be a collective asthmaversary for people who have no clue when theirs is, eh?  And on my fake/alternative/replacement/tiny-chance-that-it’s-actually-real asthmaversary, I’m gonna get all reflective.  Cuz that’s what birthdays and anniversaries, etc are supposed to be for, right?  Reflecting.
 
I’ve always wondered how life would be if various factors were different.  What if I was born male?  What if I lived a hundred years ago?  What if I wasn’t Jewish/Israeli? (That’s a pretty open one.  Cuz then, what would I be instead?  There are a billion alternatives.)  For many of those I conclude that I just wouldn’t be me in those situations.  My identity is built so strongly into those details of my life that if they changed, my experiences and beliefs and outlook on the world would be so different, I just wouldn’t be me.  What if I wasn’t asthmatic?  Then provided the rest of my life was the same and that was the only difference, I’d definitely still be me.  In this alternate reality, no one in my family would be asthmatic (since I’d already seen plenty of asthma before my own diagnosis) and we wouldn’t have any other chronic thing instead.
 
Okay, let’s run with this.  If I wasn’t asthmatic:
 
  1. I’d likely smoke hookah/nargila socially. I drink socially.  And in the Middle East, drinking socially generally goes with sharing a hookah.  I personally love the smell of hookah and honestly believe that smoking one a few times a year really is fine – if you have healthy lungs.  I believe that cigarettes are disgusting.  But so is drinking all the time.  Every time I get a whiff of nargila, I tell whoever I’m with that if I wasn’t asthmatic, I’d definitely smoke one.  Then again, this is all theoretical being as I was diagnosed as asthmatic years before I was ever offered a smoke.
  2. I’d probably be more of a bum in terms of physical fitness. I exercise 1-3 times a week when many of my friends don’t exercise at all.  I occasionally use asthma as an excuse to get people to join me (“I have an incurable lung disease and pump drugs into my body to breathe normally and more to exercise.  And I still do _____.”)  But most of my friends have either brushed me off as crazy or tell me I do it BECAUSE of the incurable lung disease.  Because I feel the need to prove myself.  I think there’s some truth in that second group of people.
  3. I’d be less compassionate and understanding than I am now. That’s something my friends really like about me and tell me pretty often.  I have several friends who have more severe/debilitating/life altering diseases than I do, and I adapt to their needs and treat them as normal without thinking twice.  As healthy as I am – and I am lucky and am able to have my health under control and feel pretty normal a lot of the time – I do know what it’s like when walking down the hall to the bathroom feels like running a marathon.  And even on a day-to-day basis when I’m feeling fine, I know what it’s like to monitor your health and take meds when your friends don’t.  (I’d say I don’t take breathing and good health for granted, but I mostly do.  I’m spoiled by modern medicine.  Which is why whenever my breathing craps up for days or weeks and actually disables me in any way, I turn into a huge baby and feel sorry for myself, because I’m used to doing the treatments and actually having them work and feel betrayed.  But whatever.  I know what it’s like to not have your body do what you want it to do.  It sucks.)
  4. I probably wouldn’t have a primary care doctor. I hate going to the doctor so freaking much — It’s not normal.  So much that when I was a kid I had high blood pressure every time I got it checked and the doctor eventually sent me to have my heart checked out – it was fine.  Turns out I have perfect blood pressure and it only goes up around doctors.  Having lung issues for most of my life has made it necessary that I see a doctor occasionally – to keep tabs on my breathing and to make sure I have a steady stream of prescriptions coming my way, but I STILL can’t stand going.  Every time I have an appointment, I spend the entire 24 hours beforehand dreading it.  If I didn’t have something I need to keep going back for, I’d probably never go, and when I did, it would be to whoever happened to be there and could see me that day.  Which is what a lot of my “healthy” friends do.  Lung specialist?  Hah.  I hate that even more.  I only end up there every few years when my GP nags me that it’s been a while and I should really get pulmonary function testing done.
  5. I could probably run/swim/do any and all physical activity much better than I can now. Provided I worked at it as much as I do now.  I’ve given up believing I can run and swim like everyone else.  Zumba yes, but running and swimming are just too hard for me and will always continue to be hard.  I still do them, but I don’t think any amount of any asthma drug can get me on par with everyone else.  Perhaps if the water wasn’t chlorinated or if running had breaks…
  6. I could freaking clean my house properly without coughing and without extra drugs. Then again, I could do anything and everything without any inhalers at all.  Ever.  I can’t even imagine that.
  7. Also I wonder what long term effects asthma and its treatment have had on my body. As far as I know, I don’t have any permanent lung damage.  I wonder if my body would be any different if it didn’t have ~16 years of asthma drugs pumped into it.  A friend of mine is a massage therapist and last week she was working on me and pointed out that in most people (i.e. anyone she’s ever worked on before), she couldn’t feel their accessory breathing muscles in their neck – which are really only used when someone is struggling to breathe.  In me, they were totally buff.  So I guess I wouldn’t have those.
  8. I wouldn’t celebrate WAD and I wouldn’t be writing this. I wouldn’t know Kerri or anyone else I have met and become friends with because of having this in common with them.
I dunno.  I don’t think my life would be that hugely different.  As far as I’m concerned I lead a pretty normal life.  The things on this list aren’t that huge in the grand scheme of things, yet they define a significant part of who I am.  Being asthmatic, doing the right drugs at the right times, taking the precautions, going through the motions are so ingrained in me that I take them for granted.  Hence when people feel sorry for me, I can’t stand it, cuz my life doesn’t suck.  But if there was a cure in my lifetime, it would take some getting used to.  (Though wayyyy easier to get used to than if I woke up male or Mexican or in the 19th century…)   I mean it would be awesome.  But life with no inhalers?  No getting out of breath or coughing ever?  Hah, what?
Have a happy and healthy WAD, everyone 🙂

 

May is Asthma Awareness Month, and World Asthma Day is this coming Tuesday. This month, I am hoping to CHANGE as many perspectives on asthma as possible . . . by SHARING as many perspectives on asthma as possible!  I am blessed to have many people in my world sharing in the asthma journey with me, who are also willing to contribute their own stories over the coming month.

I am excited to introduce you to my friend Rona, an occupational therapist living in Chicago. Among the very first of my “online friends” I met offline, I was lucky to be able to meet her for dinner back in August 2011 during a whirlwind trip through the Windy City. Rona is such a sweet and compassionate person, and I am lucky to be able to share part of her story of HOPE today.  Thanks, Rona!

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I was diagnosed with severe persistent asthma in August of 2007 at the age of 52.  After a lifetime of seasonal environmental allergies, bronchitis, and pneumonia, my lungs never really were very happy.  I lived in three different areas of the United States, but ended up coming back to Midwest America for many reasons.  As it turned out, my lungs absolutely rejoiced here in Chicago, a large industrial city.  Living far from the industrial side of the city, the air is relatively clean here.

I went through all of the stages of anyone else with any chronic illness.  Denial that this could actually be happening to me progressing to truly accepting that I do.  I embrace the fact that it is part of me, but it does not define me.

If you should meet me, you might notice the effects of prednisone on my form, but other than that, you don’t see asthma.  Back in 2007, you may have.  This visual change, this lack of shortness of breath, is what has enabled me to move on with life.  Without saying, my less than loved rescue inhaler is an external hard drive for my lungs.  Always plugged into my pocket.

Armed with many drugs consumed and breathed daily, I still suffer with exacerbations every 2-4 months, depending on unintended exposures to my numerous triggers.  Still, those in-between moments are wonderful.  I never could have believed that I could have a full life and have severe asthma.  As I danced at both of my daughters’ weddings this last Fall, this is testament to my lungs playing a minor role in my life.  I write this to thank the doctors that nursed me back to health, regulated my recovery and always encouraged me to follow their multi-lined detailed “asthma action plans”.  I owe them my life, to be sure.

With this said, I know not all of us have the same quality of life. There are many worse and many better than I, however one thing is for certain:  Life goes on and each breath is hope for yet another one.  Let all of us take a moment to look forward and hope for a better tomorrow for the very young and the very old all suffering from asthma worldwide.

I’d like to take this opportunity to add my two cents as someone who has experienced asthma.  I, and so many others, know its impact on family, career, community, and the world.  It is time to continue to do more than limit exposure to the triggers.  What else can we do?  Looking to the researchers and the funders of this research to lead the way to the answers.  There are just too many suffering from this.  We need to look at education of both those bearing the burden and those in our communities who don’t understand, to take them and walk with them until they do.

Finally, I thank you “asthma” for joining me in my walk down my own path of life.  It’s been interesting, hasn’t it?  Although you took my furry pets, my dust-ridden stuffed animals, my spontaneity and many of my life’s choices, you have taught me persistence, and for that, I respect you.  Now leave me alone, will ya?  <3