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

a year ago today

• by kerri

A year ago today

I surfaced at work after being gone for over a week because I couldn’t move. I’d been getting sicker and sicker for months and I couldn’t keep up anymore.

I went back to school to start Spring term, and right before class got a call from my doctor’s office telling me I needed to go to the ER because my hemoglobin was 54.

Today marks a year since my first blood transfusion of 2013—three units from amazing donors that kept me alive, to be followed by another seven in the next four months.

it’s been a bombs and guns and fire kind of season
oh, i need a reason for all of my bleeding tonight.
i’m going to break it out, i’m going to make a scene if i’m right

Day before I got sent to the ER. Note that there’s basically no colour in my face/lips. [I felt like I had energy, but in reality my body probably had just adjusted to being super depleted of hemoglobin that I was able to sit up again.]

A year ago yesterday.

 

World Asthma Day 2013 [May 7th] 365 days ago today.

About 36 hours later, after three units of blood and a bunch of saline.

(And the friggen Lasix. I still don’t understand this combination of saline and Lasix.)

Yesterday.

let the revival rattle me
and open my eyes
it’s so good.
revival, the rocket summer

And today—365 days later.

World Asthma Day 2014. Wearing the same t-shirt I got my mom to bring to the hospital before heading to work early in the morning.

Donald, Mike, Sam and I gave out over a hundred Asthma Society of Canada resources for World Asthma Day.

…Then went to Wal-Mart with the intention of playing Marco Polo. Because that’s badass, right?

I thought about where I was this time last year today—purposefully at some times, fleetingly at others.

Thankful that it won’t be every year that these two days are the same day so I can reflect on each for its own reason. Thankful for the people who choose to spend their time with me—the people who stick by me.

Simply: thankful I’m still alive.

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.

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.

———-

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 / health + fitness / wellness

“i’m moving forward now: the thought of a ghost brought me to life”

• by kerri

–i swear this place is haunted, a skylit drive.

It’s been four and a half weeks since I last blogged. Apparently losing a week of your life/near death experiences suck a lot more time out of life than just that one week.  For the record, I am staying more-or-less in-tact academically which is [very] surprising. I only needed to get one deadline pushed back, which was a deferral on my Sport in the Ancient World midterm. Six extra days to work through the things I missed meant I got a 78% on that test, which was much better than I’d anticipated even had I not gotten sick. I’m sitting at 100% in my Developmental Studies class (SERIOUSLY.) and got 63% on my Disability Studies paper (I am fully intending to argue that one).  As soon as I got back on my feet, I had to start drowning in school again. I had a full three days of all day work and nights till 3 AM on the two aforementioned papers that were the same week as the Sport in the Ancient World midterm was SUPPOSED to be (had my amazing instructor not granted my test deferral I’d have been screwed).

Other than academics, it’s been a hell of a few weeks. Two of the chaos producing things are so worth it: getting my Special Olympics season off the ground (six confirmed athletes, two unknowns, two coaches and five program volunteers: I need more athletes!) and planning a Team Asthma event for Sports Day in Canada. Things are fortunately falling into place but I now have five weeks to promote this event and get things off the ground. It never stops (thank God).  One of the two other chaotic things, however, was not anticipated and not a welcome situation, and I still have yet to figure it out.

I saw my primary care doctor two weeks after surgery. To say it sucked would be an understatement, and I am looking for a new doctor. To start, we discussed nothing much relevant to my post-surgical state–had I not been as angry as I was, I’m sure we wouldn’t have discussed it —at all. I went in and tried to stay civil, and asked about flu shots. Flu shots are civil topics of discussion. I then asked if she would refer me to Alaa, the doctor I saw at the hospital who did my surgery. Through the whole multitude of gynaecologic related shit, my gynaecologist had been very available and more than happy to see me any time I needed–what he wasn’t, was action driven. He also had the ability that is probably very helpful in dealing with pregnant ladies to make a person very calm (and perhaps he should reconsider a career in something like criminal negotiation because it’s near impossible to get mad at the man), which makes it a bit hard to get mad at a person. However, he also dismissed my questions regarding the fibroid, saying that it was small and shouldn’t be causing my problems. Considering under his care I received multiple blood transfusions, that in itself should be enough to warrant a referral elsewhere. It wasn’t, apparently. My primary care doctor refused to make the referral until she “receive[d] the pathology report indicating [I] need ongoing care,” but apparently I didn’t have to see my old gyn again if I “didn’t want to”.

This is where I lost it on her. “I don’t CARE what some report says, I WANT ongoing care. He was apathetic towards finding the root of the problem from the beginning, and even once it was evident refused to deal with it and book surgery until my mom called him. That’s not okay. This time I almost fucking died. I shouldn’t have to spend ten hours in the ER prior to going into hypovolemic shock less than two days after a blood transfusion, and require resuscitation before I get proper care. How is that acceptable? That’s absolute bullshit.”

That about ended the appointment. I can’t say she really responded to any of it, but it certainly didn’t get me a referral anyways. I briefly discussed the weird inspiratory pain I’d developed following surgery (I was betting and she agreed that it was just a muscle strain from coughing) and requested to go for a chest x-ray to rule out anything bizarre–honestly, she refused, and asked about pain killers at which point I lied and said I’d tried the go-tos (I’d really only tried Naproxen which did nothing), telling me “Take two extra strength tylenol every four hours for three or four days–if it still hurts, come back in and I’ll send you.” Seriously? Not going to happen. Why on earth would I OD on OTC pain meds for really minor pain?

I got a requisition for blood work, but I left without booking a follow-up appointment and hoping I never had to go back in there. I got a call the next day saying my hemoglobin was 93.  The downfall of chronic disease is I need asthma medicine to live–and I kind of need a dealer.

—–

Given the inability to secure a referral from my doctor, I called Alaa’s office myself the next day. I left a message not anticipating anything, explaining who I was, that I’d seen Alaa in the hospital and he did emergency surgery on me, that my primary doctor refused to make me a referral, and that I would really like to see him for ongoing care.

Two hours later I was shocked to see “DC OB/GYN” pop up on my caller ID, saying “Dr. Awadalla would be happy to see you for follow-up and ongoing gynae care.” I have an appointment on Tuesday.

I began the quest to find a new primary care doctor, which has been quite futile. I have a bit of a deadline of December 5th [when I apparently long ago booked a follow-up appointment] unless Alaa or my psychiatrist will refill my asthma meds for me (ADHD meds appointment with a side of bronchodilators?).

—–

Last week, after the appointment being pushed off for nearly a week, I saw my old gynaecologist. Ready to give the man shit except, damn, he’s too nice.

“So, they removed a fibroid, eh?” I told him he had certainly been informed of it.

However, he gets huge props for the fact that the second question of the appointment, which certainly made me soften a bit: “Is Dr. Awadalla taking over your care?” When I said yes, he replied “He’s a very good doctor.”

“Yeah, I really like him.”

At this point I had to start answering him in more than a few words. He, I swear to God, asked “Have I seen this ultrasound? Who ordered it?” I reiterated that he had seen the ultrasound as both myself AND my mom brought it to his attention. “A submucosal fibroid–in over thirty years of practice, I have never seen that type of fibroid in a young person–they’re rare.”

Then, he apologized.  He apologized more than once. If you are going to majorly fuck up despite being a kind and skilled person, there is no way you can fix that: a sincere apology, however? It’s as close as you can get sometimes. He told me once again “I’m sorry we put you through all of that”, and I could genuinely tell he did feel really bad about what had happened–what he had missed, what he had overlooked.

“I accept that. But the only reason I came in today was so that I know that you know exactly what happened: so that you realize a week after you told me I didn’t have to come back for six months I was in resuscitation for hypovolemic shock. It’s not okay: it may not be the typical, but it happened–I’m proof of that. So next time you have a young person in here, presenting like I did, please consider it. Because I don’t want anybody else going through the hell that I had to go through.”

With that, we left the room.  And I even said “thank you” on my way out.
I booked it down two flights of stairs, finally feeling free.
I dug my iPod out of my backpack, and scrolled through.
freedom is mine, and you know how i feel: it’s a new dawn, it’s a new day, it’s a new life for me . . . and i’m feelin’ good.
feeling good, nina simone [muse cover]
Shuffle, ever appropriate, interjected:

but i am the reason that i will stay alive […] every now and then, i think about you: it’s bringing me closer to closure–every now and then i know it’s over. […] take everything you need and move on. we are the answer to the broken breaking through–take everything from me: ’cause i’m not dying, no i’m not dying today.

the energy, audiovent

Because never again do I want to be where I was.

the thought of a ghost brought me to life.

I was that ghost.

I’m moving forward now.

i swear this place is haunted, a skylit drive

Here’s to moving forward.

Again.

Always.

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.