interview with Debbie Spring, author of Breathing Soccer

One in ten Canadian kids has asthma—and a lot more than that have an affinity for soccer. Debbie Spring’s book Breathing Soccer (2008, Thistledown Press) focuses on both of these aspects in an approachable way that encourages kids to learn more about their asthma and find balance through developing an understanding of their disease, while not allowing asthma to hold them back. I received Breathing Soccer last week, and today had the chance to sit down to chat with Debbie about the book.

Breathing Soccer can be found on Amazon [Canada and USA], Chapters/Indigo, or directly from Thistledown Press.  Please continue the discussion by asking questions of Debbie [or I] below, and I’ll be sure to pass them on for her to respond to!

Disclosure: I received Breathing Soccer from Debbie for free after reaching out to her about the book; we agreed to conduct an interview following to my reading of Breathing Soccer–I was not required to provide a favourable review—I do certainly recommend the book, though :].

three drops.

I watched with anticipation as my finger was pricked with a lancet. A drop of blood appeared and was wiped away. Repeat. The third was sucked into a test strip, and a cotton ball affixed to my finger with a band-aid.

Three drops was all the blood Canadian Blood Services would allow me to give them yesterday. My hemoglobin didn’t stop them.

My heart rate did.

[Note that’s 120.0, not 1200.]

For whatever reason, after my ten-minute “time-out”, my heart rate was 112. There are no third tries and I was deferred for the day because of 12 points. The day I wanted to be able to donate blood more than anything. I have been looking forward to this for a year—and with two heart rate readings from the blood pressure machine, I was told I wouldn’t be able to donate.
There were a lot of hard things about 2013, a lot of disappointing things. I had to cancel a trip to California last June because I was sick, and even that is, in retrospect, far less disappointing than this. I was sick and while not going and visiting ERs instead was super disappointing, I know I would have been okay on that trip.
 
This, though? This was crushing. Immediately, I was in tears; the screening woman didn’t know what to do with me, and wasn’t too good about being sympathetic (not that it would have really helped). I took my ID from her, and booked it across the gym for my bag and through the front door. I faked a smile and waved at the kids from work outside after lunch, and did the 40 minute walk home.
 
I know my heart rate runs a little high. Whether it’s a byproduct of my meds, or the hell of 2013, or both and other factors, I know that. Usually it’s not quite that high, so chalk it up to some excitement. Nobody has ever expressed real concern over my number even when I’ve asked. And while, yes, I know I can donate another day and that there are rules for a reason, it will never be that day again. The anticipation of yesterday carried me through the bulk of the past year, from the trivial where every time I contemplated getting a tattoo, I pushed the thoughts away because it would screw up my eligibility, to the more important because that thought gave surviving 2013 more meaning: to go full circle in that “everything’s a piece of everyone”.
 
The last thing I want right now is that all of me is still within me. Yet it is.
 
Part of me wanted to try again today. One year and one day after—the revival. The other part couldn’t resign to the fact that I could be tossed twice in two days. Those outcomes, like many of last years, are not in my control—and I can’t deal with that right now.
 
So I return to, resort to, quantifying myself. With a pulse oximeter purchased using my Shoppers Optimum points—essentially free, yet another byproduct of chronic disease. Because, as always, I want to know why. I want to grab those variables and eradicate them so that I don’t get let down by nothing but my own body again.
 
 
 
And, maybe I can’t change this outcome either.
 
 
But, damn it, maybe I can.

the aftermath: B[e] positive. give HOPE.

One year ago today, I was in the emergency room receiving a blood transfusion.

A year ago Tuesday, I received my final blood transfusion of 2013, following surgery that [finally] removed the uterine fibroid that had repeatedly caused my hemoglobin [and blood volume] to drop, leading to the 10 units of red blood cells I received in 2013.

This coming Tuesday will be 365 days after I went from crashing in the emergency room, being taken to resuscitation for hypovolemic shock and rapidly being infused with IV fluids, and then into surgery. And it’s a day I am trying to reclaim as my own. Nearly to the hour of when I was taken to resuscitation, I will be once again on the donor end of the process for the second time in my life. And now I don’t just want, but need, to be on that other side again. To bring that hope full circle. To reconceptualize that surreal feeling of knowing the only reason you might live, is because someone who has no idea who you are or what potential there is for your life if you life—when you live—wants to be the difference between hope and the alternative. I need that day to no longer be about me, no longer to be about that I lived, but be reminded B-postive is far more than my blood type, it’s my nature—and because of these things, someone else will experience hope.

As difficult, as messed up as last April through September were, in many ways, it was nearly as hard as the after has been. And once I make that first blood donation, take that first step, I move forward into further reclaiming my life. The first year is a year of waiting—the aftermath is always about waiting. This time, there is less for me to wait for in anticipation. Unlike 2013, a year at risk of abandoning every plan because maybe my body had other ideas for which there was no plan, I was able to embrace 2014. I actually started embracing 2014 in December, when I finally started getting my head together following the aftermath of my five months of hell—which took two months in itself. I think this is probably a process that, though extremely variable in speed, is probably true for most blood recipients: whether you are receiving blood because of “pure” anemia, or cancer, or following a traumatic injury, or any other number of conditions, the aftermath is similar—we remain in limbo, waiting for a potential sign of recurrence, or adjusting to life as it continues on a totally different path than anticipated, yet we owe the fact that we are alive to a person or people we can usually not thank ourselves.

My limbo, is not knowing what’s going on inside my body: an impossibility without medical imaging. I had a follow-up pelvic ultrasound done in early July. I spent a bit over a week, part curious and part agonizing, about the results. I phoned Alaa’s office—Alaa, who had taken me as a patient when my own primary care doctor refused to refer me—and said it was okay for his staff to leave the results on my voicemail. They actually did. July 14: “Dr. Awadalla said it was an excellent report, only a tiny 1.2 centimetre fibroid noted—otherwise a very good report.” That small fibroid, dependent on its location, could be where this story started: or, it could stay that size for years, and remain totally innocent. I am now simply trying not to think about it and live my life—even more true now after phoning last week to figure out the plan. As I anticipated, I simply continue what I am doing. I am not going to get to come off of oral hormone treatment (the inappropriately titled, in my case, birth control pills) anytime soon—I could be on these pills at least another 20 years if nothing changes, and as backward as it seems, clearly I hope this is the case. Yet, if anything does change, I go in to see him right away (and I’m sure they will get me in right away—they called me twice last week to tell me what the plan was, and the second time was at 7:12 PM) and we discuss probably putting a hormone intrauterine device in (specifically, the Jaydess IUD) to, I assume, better target the hormones. So, some of the lingering anxiety has been eased, because I know that getting taken care of isn’t just a front anymore—I know Alaa cares, like all doctors should. The psychological aspects of much of my experience in 2013 is far more of a burden than the physical aspects are: doing what I can, having a team that engages with me as they can to address me as a whole person, is what makes the difference between using the (sometimes hidden) gifts contained in my transfusions, my team, my experiences… and wasting them.

And in this, also, is my hope. The hope that is only alive in me, because I made it through 2013, because of people. 

If you are an eligible blood donor, please consider donating blood with me on Tuesday, like my friend Heather (who is not even in the same country as I am, so no excuses :]), or any day soon. If you are not an eligible donor, consider volunteering at a nearby blood donor clinic for a few hours: you can still make a donor’s day by being that person to hold their hand through the needle insertion, or being the awesome person hanging out with the juice and cookies afterwards, or providing a financial donation to support the work that organizations like Canadian Blood Services, Hema-Quebec, and the American Red Cross do to help people… like me.

I’ll even buy you a cupcake next time I see you.

Since there are few other ways I can show my appreciation of your gift to others—because that gift is far beyond time or blood or money–

It’s hope.

Tour de Good Things: People. | #medx 2014

The Tour de Good Things was a way i could summate the crazy journey I took to culminate August and begin September—both on an extremely high note. It has been nearly impossible to come down from the high that begun prior to Medicine X 2014 at Stanford University [disclosure], especially since the journey encompassed 7,227 kilometres (or about that). The last Thursday in August, I got into a car with a 60L hiking backpack of necessities and a drawstring backpack of medications, my only “prepared” travel document being my passport, and left home for 12 days. I arrived back into Winnipeg by plane last Monday after a red eye flight via Minneapolis—my initial destination.

There are many posts in here waiting to be written, and a video to come. But as many, many others have summated, the power, the magic, the amazing of Medicine X is in the people: This is a theme that would cover the entirety of the Tour de Good Things.

Minneapolis.

This kid (my cousin, Dean) headed down to University of Minnesota to start becoming an engineer of the probably civil variety, not the train variety [though, train engineers are probably also very civil]. So thanks to him I got a really long ride to the airport.

I also had grilled cheese and an awesome conversation on the parallels of asthma and T1 diabetes with these lovelies, Scott and Heather.

SFO. All over the East Bay. Santa Cruz. Davis.

My awesome aunt, Linda, and my grandma dropped me off at MSP after a 4.5 day drive to the airport […okay, the airport truly is only 8 hours from home. Not that that’s close.] and a four hour flight, I hit ground at SFO and was swept up into my “Cali-bestie” Steve’s truck, where (after picking up pizza), I FINALLY got to meet his long time partner and now husband, Doug (finally. On my third visit to the Bay Area—third time’s the charm, right? Doug is, of course, to a tee of how Steve describes him, and a total sweetheart just like Steve). We headed to Santa Cruz the next day, and San Jose where I finally got to meet his mom, Claire, his sister Sheree, and Sheree’s husband, Dan, who had us over for lunch on Monday.

The next day we headed over to Davis to get Steve’s new bass set up by a cool dude named Harrison.

San Francisco.

Steve drove me out to SF on Wednesday [because he is the best] to ensure I made my connection with my friend Carly (whom I met at MedX in 2012!) at the Twitter building. Carly’s friend Samantha was [at the time] working for Twitter, and had invited Carly for lunch—and opened up the invitation to any of Carly’s friends who wanted to come, too, which was beyond awesome :). (Samantha on the left, Carly—our link!—in the middle :].) Thanks, ladies!

Carly and I made a brief stop in Japantown after lunch and our tour around Twitter with Samantha, and then headed for Palo Alto. Not long after arriving, we had a spontaneous MedX ePatient gathering by the pool—meeting, and reuniting, with a lot of kickass ePatients—friends.

Carly and I (left, of course), [fellow Canadian!] Annette, Liza, Meredith, Dee, Marie (from Ireland!) and Michael (from England!) at the Sheraton. (Thanks to the Sheraton team member who ran out to take this shot for us!)

The next day, the fun really got started when Dr. Larry Chu [the beyond awesome MedX Conference Director!] introduced us to the Selfie Stick [here’s a professional picture (source) of Leslie, Emily, Karen, Rachel [TEAM CANADA!], myself, and Nikki selfie-ing with a selfie-stick on pre-conference workshop day!]

Of course, Ryan had to give it a go once we hit MedX full-stride—he had to make himself short for me so that a) I could adequately put my arm around his shoulders, and b) because he is too tall and was blocking the world medicine :).

No selfie stick for Brett and I, though (…everybody is SO TALL). He yelled “Oh hey, it’s Kerri!” in the corner right by the selfie station, and then we hugged, and I was like “okay we need to selfie so we don’t forget!” :]

We don’t always selfie in front of the selfie wall—sometimes we selfie in front of the gold badge door. Not only was Devon, below, a hit among the crowd at MedX, I was super excited to find another lunger on the scene [I mean, asthmatics DO hide everywhere, but… they hide].

Devon spoke on a panel about “the non-smartphone patient”, and has COPD. And, though he seemed adamantly against it before I showed him everybody tweeting his quotes, I did get him signed up on Twitter!

My super sweet roomie, Karen, and behind us, her poster presentation on the metaphorical dance that is chronic illness. Karen is a sport psychologist from Mexico and is generally amazing, so we never had a shortage of fun things to talk about :).

And on the subject of roommates, my 2012 roomie, Kim, and I—clearly in the club, and not at a medical conference. #ClubMedX

And, Miss Zoe Chu. While puppy, and not people, she lovingly made MedX granola for me and we had selfie times, so she clearly belongs on this list :].

Joe from Eli Lilly’s Team of Good People and Awesomeness (aka Lilly Clinical Open Innovation) and I—we look less like a painting in person. Probably. 🙂

And, Jerry from Eli Lilly, who was in the elevator on Thursday morning before Partnering for Health when a bunch of ePatients yelled my name and hugged me as I got on the elevator. Except we didn’t know we were supposed to know each other yet, and then he sat down beside me at Partnering for Health and identified us as the people from the elevator and said he was wondering if we were Medicine X people. Because I am all class, I was like “Yeah, we were the people yelling and hugging in the elevator—did you feel left out?! Do you need a hug!?”—he accepted this crazy Canadian’s hug, so we are clearly meant to be friends. Also, he’s awesome. And broke into a presentation during Partnering for Health when all the patients were very confused on Twitter.

Alan, Britt, Leslie, myself and Julie (Photo grabbed from Britt via Facebook!)

Sarah—one of the awesome ePatient advisors—with her CANADIAN SCARF, Rachel and I, after the closing ceremony of Medicine X.

And below, Britt (on the ePatient advisory team), Marvin—who is super sweet and I didn’t get to connect with nearly enough! :)—Rachel and I. 

And, my own ePatient advisor and friend from 2012, Chris (he’s laughing about attempting to hug me with the giant hiking backpack on)—just before Joe (below!), Marie and I headed to the airport (where I almost lost my phone and Joe totally provided an amazing Joe-hug to alleviate my stress, and told me how I could get the Delta people to bring it to me to avoid having to go back through security, since I’d left it at the check-in kiosk). 

These people—and ALL the people I met and interacted with at MedX

(I can’t even source those photos anymore :])

—are not the entirety of the story of Medicine X: but they are the part that matters most. As are the people that preceded my arrival for Medicine X to my own part of the journey, and the people who engaged in #MedX via Twitter: WE belong here.

(Photo of photo cred to Joe Riffe)

And here isn’t always a place: often, it’s a state.

And I love each and every one of you, and I hope our stories continue to connect in a way that makes a difference: Remember to not lose sight of where you were—where we were—hold on to that feeling.

We’ll change the world together.