May is Asthma Awareness Month–and this coming Tuesday is World Asthma Day. After spending a couple days together in the SF Bay Area last week, Steve and I got our networks to send out some questions, and did a very unstructured Q&A videocast to hopefully get some light shed on asthma, our thoughts, and hopefully teach some people a few new things about this disease.
asthma
I have too much to write that requires a lot of thought, and not enough time to write it all out. I’m rounding up guest bloggers to help me out, but while that solidifies, here’s a new series called Short Stories.
Short Stories will be quick anecdotes from my life in a given moment. No greater purpose, just random moments that may [or may not] be of interest.
If you make a mistake, press star
As I managed to break online prescription refills from Shoppers Drug Mart, I use the automated phone service instead.
(Yes, don’t ask me how I managed to break the online service. And the app. Or why I can get Concerta cheaper at Target.)
I have three medications on my counter needing to be refilled relatively soon: Qvar, Atrovent and Concerta, all neatly labeled with their respective “7 digit Rx number located in the left hand corner of your prescription label”.
I also have a pack of hormone pills with 3 active pills remaining [because I back-to-back those F’ers—since I don’t want to be on them but am for medical reasons, obviously I will use this to my advantage], but no respective label. I “press 1” as I walk to the kitchen to find a receipt with my history to grab the number. Punch it in.
“To request another refill, press 1. To hear when your refill will be ready and confirm your order, press 2.”
Press 1.
“Please enter the 7 digit Rx number located in the left [I DID NOT NEED TO PRESS 1!!!]. If you make a mistake, press star.”
I am pretty sure pressing star will not help me.
Glance down, next on the list– “Zenhale 200/5 – Ref: 1”: Input number.
Press 2.
I don’t need the Zenhale for 27 days. But hey, at least when they tell me it’ll take a week to get in despite promising they’d stock it, I won’t have to revert back to my backup stash of Symbicort I have now for this purpose.
It makes sense if you have chronic disease!
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! :]
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!
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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!
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.