On Sunday, I sat a table in Perkins in Minneapolis with my friends Scott and Heather, engaged in the flow of conversation over grilled cheese sandwiches—the usual flow of topics with a few twists: exercise, coaching (in the life-coaching sense!), and diabetes. In the past, I’ve had conversations with my friend Bethany in which mid-sentence in a Starbucks [or elsewhere] she’s kind of stopped and said “Are you getting this?” to which I just nodded and said “Yep, keep going.”

“It’s just so crazy you know all this stuff about diabetes and you don’t even have it!” She replied.

A few years ago, I found myself surrounded within the Diabetes Online Community [or DOC]. And since then, I’ve learned a lot about what life with diabetes—no matter what type—can look like. Because not everybody with type 1 has the experience as another type 1. Not everyone with type 2 has the same experience as somebody else with type 2. And, mixing elements of both T1 and T2 are those with LADA—or type 1.5, and their stories will look extremely variable, too.

As Scott and Heather discussed Nightscout/CGM in the Cloud (how very smart/techy people with diabetes or caring for people with diabetes have managed to connect their Dexcom continuous glucose monitors through smartphones to upload their glucose data to the cloud, and from there, can load data remotely—ie. a parent can watch their child’s blood sugar levels from their desk while the kid is at school, the data can be streamed to a Pebble smartwatch to allow less-conspicuous access to BG levels, or a variety of other possibilities to allow even more of a safety net than CGM currently provides).

(Graphic source: DiabetesMine)

Scott had given me the CGM in the Cloud tour in August (so I arrived at Dana’s DIYPS talk at Medicine-X I was a bit more clued in than I had been previously!), also over grilled cheese, and while I’d heard about the system over Facebook, it was even cooler to see in person as he slid his Dexcom over and handed me his Pebble to see it first-hand. Dexcom has only recently become available in Canada (both standalone and integrated with the Animas Vibe insulin pump), and I shared this with Heather and Scott… along with the slightly amusing fact that I constantly have Animas Vibe ads on the side of my Facebook page because of all of the diabetes talk that goes on within my Facebook feed.

The reason, though, that I have so many friends with diabetes is perhaps because of diabetes, but more because many people with diabetes care about something much larger than their own story: they care about making the story of others better. I joined a Diabetes Social Media Advocacy (#dsma) chat on Twitter one night several years ago (and several more after that) and people were really enthusiastic about my non-diabetic self joining the conversation because I wanted to learn. The DOC has, in turn, become my support. They were the people who were constantly reaching out when I was in the ER for blood transfusions, or are the ones who reach out when I say my asthma is sucking—just as I do when someone tweets an out-of-range blood sugar, or shoot an iMessage off to a friend just to check in when they’re struggling with their diabetes. They are a big, passionate and loving community, and that is because of the individuals that are a part of it: they see the bigger picture, and they want to make the bigger picture BETTER.

In my day to day life, yes, maybe diabetes is just a passing thought when one of my few local friends quickly checks their blood sugar or takes an injection at lunch—but it’s also knowing enough that I can provide a bit of empathy and humour. One day at dinner, a friend tried to check his blood sugar under the table and I just laughed and said “Hey, I know what you’re doing, it doesn’t bother me if you use the table, you know.” If asthma has taught me one thing, it’s that we all try to be stealthy with our disease management sometimes, and often it’s more for the sake of not being asked questions than it is we truly want to hide what we’re doing—later that night, though, the same friend did text me his BG (we were, after all, at Olive Garden :]), and I hope that my openness can be a layer of support for him if he ever wants it.

In living with any chronic disease, it’s about feeling like you have options (even if, maybe, they are pseudo-options because they are necessary): to choose who you talk to—because I don’t have diabetes, on occasion friends with diabetes will message me because I don’t have diabetes but have a very basic understanding of what they’re talking about; to change up your routine; to use different methods of treatment. Using a continuous glucose monitor is one of those options—because while the information can be extremely helpful, it’s also a constant reminder of where you’re at and can lead to data overload. Same with using an insulin pump for those who are insulin dependent: it increases flexibility in some ways versus injecting insulin, but it also means that 24/7 you are tethered to a small machine or have an insulin pod stuck to your body. Which leads to the choice aspect: my friend Bethany (above) has had T1D for over 30 years. The last time we had lunch, she pulled out an insulin pen and I was like “HEY. Since when are you not pumping?!” (She laughed and was like “Wow, it has awhile since we’ve seen each other, hasn’t it?!”)

Where am I going with all of this?

My friends with diabetes have no choice about having diabetes—they make the choice to do their best, to advocate, to change their world and the worlds of others with diabetes though support, technology innovation, and compassion. Diabetes is 24/7, in a far different nature than asthma is: with diabetes, the same hormone that is provided through injections or pumping, insulin, to save a person’s life can also be lethal—diabetes is a constant balancing act. It is psychologically invasive in a different way than my own chronic disease is. None of us have a choice, but we can learn how to best support one another. If I can provide the kind of support that says “Yes, I want you to be healthy. I want to support you as I can, as a person without diabetes—I’m here to accept where you’re at and listen. I want better things to be available. I care.this is what I want.

Read that last sentence over and simply take out the segment that reads “as a person without diabetes”—shouldn’t this be how we all interact with each other? By learning about where someone is at, and accepting them in that moment?

My friends with diabetes can DO THIS. They can manage their diabetes with the tools they have. And because they can DO this, the ins and outs of life with diabetes, I can certainly LEARN this: a few small lessons about their worlds that hopefully make them feel supported in the way we all want to be. Even if at some times that just looks like a non-diabetes conversation for a break, or having some snacks on hand and waiting out low blood sugars with my friends.

Because that’s the most important part: we are here for each other, because we’re friends.

To my friends with diabetes: Thank you for everything you’ve taught me—I owe you all a hug! :]

A few months back, Dia and I began collaborating with the staff at the Asthma Society of Canada [ASC] to build a new resource for patients in the form of educational webinars. As flu season begins to take hold (Flu shot? Check? I hope so!) we decided that the flu and how that whole situation can be far more complicated with asthma, and other chronic diseases, was a good topic for our first go at a webinar!

Prepare for flu season by joining NAPA and ASC’s webinar session on Influenza and Asthma! Thursday November 18th at 12:00pm EST.
Register today at http://bit.ly/ASCFluWebinar

Dr. Shelly McNeil (Dalhousie) is lined up among the presenters, and you can learn more—and register!—at the link above. I hope you’ll join us and engage in better managing your asthma, or helping to protect someone with this disease, during flu season!

In August/September, I ventured from Winnipeg to Minneapolis to San Francisco, to the East Bay, to Santa Cruz and Davis, California . . . to simply start the journey that lead me to the campus of Stanford University. I already wrote about the people—so, here are more of the good things. . . and a chance to meet the people and hear their voices and stories, and how technology and social media, engaged patients and engaged providers are changing the realities of medicine, and more importantly, improving patient care outcomes.

Disclosure: Stanford University, Stanford Medicine and Stanford Anesthesia, as well as their partners (including the Kadry Foundation, Eli Lilly, and Boeringher Ingelheim) covered part of my costs to attend Stanford Medicine-X, including part of my airfare, one night of hotel, and a significant portion of my conference fees. As a recipient of an ePatient Scholarship in the Engagement/Producer track, I was required to produce a blog post, video, etc. to share the stories of Medicine X—but, let’s face it, I would have done so anyways :].

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 :].

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.