asthma / badassmatics

a tallygear custom: clip-on inhaler case!

• by kerri

I often sport products made by the awesome Ms. Donna Annese, the creator of Tallygear. Regardless of what kind of small items you’re needing to carry around with you, if Donna doesn’t have something to suit your needs on her site, she’ll think something up as quickly as you can ask for it! Donna launched Tallygear–named after her daughter, Tally–after creating the original Tummietote band: a fun way for Tally, who has type 1 diabetes, to carry her insulin pump and other necessities, but also allowing a lot of freedom. The tummietote band is comfortable, flexible, and most importantly, attached to me. For kids, but also other (disorganized?) adults like myself, the fact that I’m not putting my bag down anywhere means that I’m not forgetting it anywhere.

Unless I need a backpack, thanks to Donna, I basically never have to carry a bag anymore—for quick trips out of the house or workouts, I can stash my inhaler, keys, debit card(s), phone and whatever else into a tummietote band or belt and roll. For longer ventures, like field trips at work or if I need a bit more stuff with me, I LOVE the medical supply tote (formerly called the Hipster Pack)—I can fit multiple inhalers, an aerochamber, and several other small items inside, and barely notice it. To add to the fun, I also have several “super cool” headbands, and medical ID wristbands also made by Donna.

Several months ago (as you can tell, my blogging has been scarce—I intended to write this months ago!), Donna made the Dexcom G4 case. I commented on one of her posts that I’d love to see something similar to toss an inhaler (you know, for days where I need even less storage than the tummietote!) . . . and, she made it happen! I picked some fabric, and my wish was her command—I found not only a brightly coloured clip-on inhaler case, but a black one, in my mailbox a few weeks later

 

I love this thing. I usually keep it attached to a belt loop (however, tutus also have nifty little ribbon loops inside supposedly for hanging, but also likely useful for clipping-ness—in the above picture, I’m wearing black jeans under the tutu, and though you can’t see the belt loops, it’s attached to my jeans). The tutu method, however, also allows for the case to be attached and hidden underneath. In addition to my Ventolin inhaler, I usually have a bus ticket inside (or, I did until I got an iPhone, which is more convenient for storing bus tickets in the case of than the BlackBerry was), and occasionally a stray Concerta if I’m going to be out at noon when I take my midday dose). I also usually have a house key clipped to the carabiner (because that is mostly the only key in my life other than my work key). Contrary to the above picture, at this point I usually have it clipped at my side, and in that position I barely notice it.

Mostly, though? Regardless of the colour, it’s surprisingly inconspicuous! I work with kids, and either they’ve just learned that’s probably my inhaler, or they just don’t really notice it.

I’m banking on inconspicuous, though. Those kids LOVE my neon squares Hipster Pack—and I’ve even had random kids I don’t know tell me how cool it is. Well, girls anyways. I’d probably have to get some t-rexes or something* going on for the boys to exit their own little world. (*I just racked my mind for three minutes and can’t seem to determine what boys are into at present. Previous seasons it has been Deadmau5 and LMFAO and Minecraft, but I am apparently no longer with it.)

Thanks, Donna!  If you haven’t already, check out Tallygear to discover more fun ways to store your stuff—if you don’t see it, dream it up and get in touch with Donna—she’s amazing, and she’ll make it happen!

 

Disclosure: I received the inhaler cases, as well as other Tallygear products in the past from Donna for free. I was under no obligation to blog about the products, or provide a positive review. There’s a reason I keep going back, people: her stuff is quality, and I need more colours and designs! :]

advocacy / asthma / badassmatics / guest posts

haika clothing: justin’s asthma awareness story

• by kerri

Today, I’m happy to share a piece from Justin Castillo, founder of Haika Clothing Company. If you’ve spent some time here, you’ll know I’m a big fan of t-shirts, and even more-so when there’s a story behind the shirt. Today, a true testament to put in the Badassmatics file, Justin shares how he got started, how he refuses to let asthma hold him back from living an active life, and hopes the message within his clothing will help others with asthma live the same through provoking thought and healthier lifestyle choices (though, I can’t say I’d condone his act of leaving his rescue inhaler at home–keep that shit with ya, people, it’s important!).  Thanks, Justin!

———-

It all started in March 2013. 9 long months ago, but for me seemed to go by in a blink of an eye. I was reading an issue of Entrepreneur Magazine and learning about all these companies starting from nothing and seeing where they were headed. I thought to myself, “Why can’t I think of something?” I kept seeing all these clothing companies that would donate or give back to organizations and charities such as breast cancer, autism, the fight against hunger, etc. These are all great causes, don’t get me wrong, but it seemed like everyone was helping the same cause. Also, the shirts these companies would offer, just didn’t fit my style. All they would sell were message tees. For me, I like to wear active/streetwear clothes that fits the surf & skate demographic. My “Ah Ha” moment came when I realized why don’t I create a something that supports a cause I am passionate about and offers t-shirts that fits my sense of style. Thus, Haika was born!
Why asthma you ask? I have had it since childhood, so it made perfect sense. I searched all over the internet and couldn’t find a anyone that supported asthma, in terms of a clothing company. So, I combined my two passions: helping those with asthma, and, creating a clothing line that fits my sense of style. Instead of creating message tees, I wanted to create something where the message was already in the brand. Don’t let asthma take control of you. You must take control of it! I want people to do what they love, and not let anything get in the way of that. Whether is it asthma or not.
I’ve played competitive sports, such as baseball and football, throughout my whole life. Of course there were times where I would induce an asthma attack, but I didn’t want that to be an excuse of why I couldn’t continue to participate. I felt that those experiences made me stronger physically and, more importantly, mentally. In some sort of weird & twisted way, i’m glad to have asthma. In a sense of not to take things for granted.
I took it a step further and incorporated a more healthier style of living by exercising and eating properly. I found out that this has dramatically decreased the use of my inhaler and asthma attacks, as well as increasing my energy level. All I want to do now is get out and enjoy the outdoors. I still take my preventative inhaler two times twice a day, but I can leave the home comfortably without my fast acting inhaler. To know that you have it that well managed and under control is a big step and confidence builder for anyone who has asthma.
From idea to reality, I want to see Haika as a company and project, grow not only throughout the U.S, but worldwide. With help of awesome people like Kerri and Stephen we can spread this message and help millions of people with asthma by supporting research and study efforts. With each purchase, $5 is donated to an asthma organization or charity in our customers community. That way they can have a direct impact and feel great about what they are doing! Visit haikaclothing.com for more information.

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Beyond a potential conversation-starter, 20% of your purchase of a Haika Clothing t-shirt will go towards an asthma-related non-profit organization. If you’re working in the best interests of people with asthma and are interested in partnering with Justin, drop him an e-mail!

advocacy / asthma / health + fitness

making the invisible visible: 30 things. #iiwk13

• by kerri

I haven’t filled out the 30 Things About My Invisible Illness meme for a few years. [To be perfectly honest, and not to start any debates, but I actually am a bigger fan of the word disease than illness. But that’s another story–I feel like disease and illness are both states but illness often carries the connotation of “temporaryism”].

1. The illness I live with is: Asthma, anemia, uterine fibroids [and though not an illness, borderline ADHD]

2. I was diagnosed with it in the year: 2008 / 2012 / 2013 [/ 2013]

3. But I had symptoms since: 2008 / 2012 / 2012 [/ forever]

4. The biggest adjustment I’ve had to make is: Remembering to carry my meds with me.

5. Most people assume: That because the things I live with are common that they aren’t a big deal to live with.

6. The hardest part about mornings are: Making sure I have all the medical crap I need for the day organized [read: thrown haphazardly in my backpack]

7. My favorite medical TV show is: I don’t watch TV. But if I did, I still wouldn’t waste my time watching medical shit, I spend too much of my life dealing with it :].

8. A gadget I couldn’t live without is: Probably my iPod, not that it has anything to do with my asthma. [Though, it keeps the ADHD aspect of me organized :)]

9. The hardest part about nights are: Honestly? Remembering to actually go to bed at a proper time.

10. Each day I take __ pills & vitamins. (No comments, please) 7 pills–however, since my treatment doesn’t revolve around pills, I also take 3-4 inhalers and neb treatments as needed.

11. Regarding alternative treatments I: Am skeptical, outside of adjunctive exercise and balanced nutrition [something I need to practice more :)].

12. If I had to choose between an invisible illness or visible I would choose: Invisible.

13. Regarding working and career: I know that my asthma may change how I do things, but not limit what I choose to do! I’m very blessed to presently work in an amazing place with people who genuinely care about me–through a pretty bad asthma exacerbation last September, to like 3+ weeks (combined) off work through the spring and summer because of the anemia/blood transfusions/un-diagnosed fibroids causing me to bleed to death, my boss has never required me to submit a doctors’ note. How much my coworkers care is beyond amazing–we’re far more than coworkers :].

14. People would be surprised to know: I think there are a lot of things that people would be surprised to know about living with chronic disease, especially when you’re pretty young. I think it would surprise people that I very much work to hide my asthma symptoms in real life; I think it would surprise people to know how many [thousands of] times I’ve hidden in a bathroom to take my inhalers; I think it would surprise people to know how educated you have to be in this country to receive proper medical care.

15. The hardest thing to accept about my new reality has been: I’m not really sure this is a “new reality”. The reality is, I live my life with what’s thrown at me–and I think that’s what I’ve always done.

16. Something I never thought I could do with my illness that I did was: Really, I think I started tackling things after my asthma diagnosis that I never would have bothered with before. Simple things, but simple things that made me a better person. I think if anything, asthma made me more ambitious than ever feeling limited.

17. The commercials about my illness: Could not piss me off more. Take this drug and you’ll have perfect asthma control and frolic through the field of daisies with all of us in the Elusive Land of Perfect Control! I take three inhalers, 2-4 times per day, plus a rescue inhaler and nebs anywhere from zero to twelve times a day (on a bad day) and I still can’t run anywhere for very long.

18. Something I really miss doing since I was diagnosed is: Like I said, I live a much fuller life post-diagnosis. I can’t say that I miss living less ambitiously than I do now! So, I’ll go with breathing effortlessly.

19. It was really hard to have to give up: Once again, I say it all the time–“asthma may be a speed-bump but it’s never a road-block”. The only thing I really gave up was not having ridiculous lungs–and, I didn’t really have a choice in that, did I?

20. A new hobby I have taken up since my diagnosis is: Blogging, meeting people from the internet [ooh, dangerous! :)], exercise, and visiting my dear, dear friends at the pharmacy [kidding, dear God].

21. If I could have one day of feeling normal again I would: Feeling normal? I’m not sure I ever felt normal before I had all this weird stuff happening in my body–let’s be honest here, I’m rather strange :].

22. My illness has taught me: That I can choose how I define my own world.

23. Want to know a secret? One thing people say that gets under my skin is: “Oh, it’s ‘just’ asthma.” Yes, because BREATHING is not important AT ALL. “It’s all in your head.” Actually, it’s not–and I’ve got a copy of my methacholine challenge that proves that.

24. But I love it when people: Are aware of the realities of living with asthma, the variations of what “asthma” can mean and make an effort to be conscious of people with this disease.  Or… if they’re interested in discovering the above!

25. My favorite motto, scripture, quote that gets me through tough times is: I think there are a lot of them, but mostly they come in song form.

Watch the Sky – Something Corporate (“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 // […] i think i could use a little break [but today was a good day]”), has been a big one through long nights of asthma and ER visits for the anemia. From my ER visits this year, the picks were

Caves – Jack’s Mannequin (“no peace / just clicking machines / […] / i lay still, still i’m ready to fight […] / the walls are caving in / as far as i can see […] there’s no one here but me / beat my body like a rag doll […] windows leading to the past / think it’s time i broke some glass–get this history off my mind / […] everything’s a piece of everyone.“),

Diane the Skyscraper – Jack’s Mannequin (“but I don’t have the energy / so she plugs my machines back in […] / i’d be lying if i said this was my plan / but we are all in this together / see i’m trying but i just don’t understand / why i can’t predict the weather past the storm.”) and

I Swear This Place is Haunted – A Skylit Drive (“Is there something beyond science going on here? / in the dead of fear, fear / […] this is the last winter–part of a change for better / I’m moving forward now–turn all of this white, the creature at night / you said it would never find out where I rest my head at night.”.)

26. When someone is diagnosed I’d like to tell them: Do what you have to do, stay–or become–active, make good choices, ask a billion questions, and own this thing.

27. Something that has surprised me about living with an illness is: How much my perspective on just about everything has changed. For the better.

28. The nicest thing someone did for me when I wasn’t feeling well was: Hands down, Medicine-X last year was full of these things. People there, my fellow ePatients, understood my prednisone induced crazy. They asked the right questions and made me feel like I was supported and cared about. My friend Steve checked in a few times a day to make sure I was okay and kept offering to drive down the couple hours to Palo Alto if I needed anything. It was overwhelming, and I felt like shit, and I really could not have gotten sick in a better place as unfortunate as the situation was, because people there got it. People at home have a harder time comprehending it.

29. I’m involved with Invisible Illness Week because: Just because you can’t see it–doesn’t mean it’s not there. I usually look–or can look–totally healthy, even if I’m not.

30. The fact that you read this list makes me feel: Thankful. That one person at a time, you and I can change our own perspectives . . . to change somebody else’s.

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

IMG_1726.JPG

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!)

Photo+on+2013-06-30+at+11.07.jpg

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.