re-energized: Fall, California, #MedX, and the possibility of “how might we”

It is the first day of Fall, the people of the internet (aka my friends on Facebook) are telling me. It’s kind of hard to believe given I got back from beautiful California less than a week ago where it feels like summer and is generally pretty. Alas, my favourite season—Fall—is upon us, and I engaged in an (iced) pumpkin spice chai at Vancouver airport at probably ten-something PM on Monday night.  (Pumpkin spice chai is amazing. I was getting ehhh about normal pumpkin spice lattes, honestly, and I am thrilled by pumpkin spice chai lattes.)

And is obligatory on the first day of Fall, listening to Come Winter by Daphne Loves Derby (on repeat), as has been my general habit since about 2014, if not earlier.

If you’ve got Apple Music, here’s a link to a slightly different EP version that I’m enjoying.

Fall is my favourite season not just because of pumpkin spice. I enjoy the cooler weather, the jeans-and-hoodies combo, the foray into toque-season (without the brutal cold associated with toque season), the fact that Goalball starts soon (and archery!), the fact that my lungs generally like Fall, and the fact that I get back to a bit more solid of a routine—for the lack of routine I generally have, even in the non-Summer months. Despite some of the worst moments of my life happening in the beginning portion of Fall (looking at you, 2013 and 2014, and even 2016), these have all come with resolution attached—“part of a change for better” (I Swear This Place is Haunted, A Skylit Drive)—or at least a piece of resolution that produced a change I can, at least now, feel positively about.

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This year, again, fresh off a return from Stanford Medicine X, and subsequent #MedXHangover and ongoing recovery, I feel that sense of renewal, that sense of recharged passion and purpose for creating change, both in myself and in the world. It doesn’t hurt that I’ve got some other advocacy-related travel opportunities in the works (travel may exhaust people but it energizes me), or that I met so many amazing people last weekend at MedX. It doesn’t hurt that the people I met and the experience I had at IDEO for the Medicine X – IDEO Design Challenge re-inspired me to think differently, creatively, in terms of “How Might We”s and innovation and possibility and better. No, spending a glorious two days with one of my favourite people on earth, Stephen, in Santa Cruz to relax and recharge even prior to embarking on the Medicine X whirlwind of inspiration, that didn’t hurt either. Meeting a dozen Canadians at MedX reminded me that things are possible, change is possible, even in our slow-moving, lack-of-progress medical system (although I maintain Toronto is more receptive to change than Winnipeg/Manitoba/our ridiculous healthcare-killing Conservative Government is). I am ready to do more. Batteries recharged.

I am re-energized. Re-inspired. Thanks both to California, to the MedX Family, to friends, and to the crispness of Fall.

Well, I’m sure another pumpkin spice chai latte wouldn’t hurt, either.

slingshot saturday: ten links from around the web.

In one way or another, I’ll be using Saturdays to look back—whether it’s on goals I’ve made and progress towards them, recapturing the past month, on music that I’ve been digging, anything goes.
 
Today’s Slingshot Saturday will take us back to some links from the past week. [It was the week we all started having to write 2015 on stuff, so good links were both easy AND difficult to find].
  • The Massive Fitness Trend That’s Not Actually Healthy At All. Thanks to the real-talk of Greatist for this gem on “the militarization of fitness” and why it’s not a good thing. (That’s right… Let’s ALL embrace not puking at the gym… Lactic acid craziness does not go hand in hand with a good workout, resolutionists.)
  • Real-world doctors fact check Dr. Oz, and the results aren’t pretty. Yes, those of us immersed into this scene could have told you this years ago about the fairytale land Oz is living in (and The Doctors)—I just hope this information is adequately getting to the general public.
    You know how you’re not supposed to believe everything you read on the internet? That goes for TV, too—even more-so, maybe.
     
  • About that mom who’s not bragging about her kid. As a young adult with learning and attention issues, parts of this article definitely resonated with me: while I struggle sometimes with not being as proficient with a variety of things as I’d like—both now and in the past—this article really hit home for me about maybe what my mom was thinking in certain conversations with people at times, especially when I was in university. That’s right, if anything, this can intensify after high-school graduation.
     
  • A Step Forward. A blog post by my friend Mike at My Diabetic Heart that is definitely worth reading if you have or care for someone with chronic disease: it’s hard to be perfect, and sometimes it’s the outward-seeming smallest steps that can get us back to focusing on better.
  • Jeremy Kyle: Who Stole my iPhone. Much like Maury Povich is to America, Jeremy Kyle is really just a far more amusing [to me] version, except from England. My friend Simi and I watch Jeremy Kyle via YouTube late-ish at night (for me) and early in the morning (for her in England, thus her knowledge on Jeremy Kyle). Related: “Which of my children stole my bingo winnings?”

Enjoy the rest of the weekend!

tour de good things: medicine x 2014

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 :].

stanford #medx: from your couch!

Stanford Medicine X is “a medical conference for everyone”.

Everyone includes a lot of patients—including myself, and people like my friends Kim and Carly [and many others!] who also attended #medx in 2012 and will be back this year.

Cherise, Kim, Chris and I in 2012!

More importantly right now… everyone includes YOU—or, anybody who is chilling at home on their couch, or at their kitchen table, or anywhere there is internet, thanks to the Medicine-X Global Access Program! Through the Global Access Program you can join the main stage fun of Medicine X, check out how technology is evolving and changing healthcare, and how that is becoming more and more accessible to both patients and care providers*. Med-X is taking place from September 5th through 7th [with workshops happening before as well].  And, it’s free! [I know right?! Free is my favourite price, too]  If you’ve never attended a conference virtually before, Carly is a master: she has even written an amazing virtual conference attendance how-to guide to help make the most of your experience.

Remember: Medicine-X… is for everyone. Everyone who participates in Medicine X — whether in person or online — is there for similar reasons: We believe our stories can make a difference; we recognize the potential technology has to improve healthcare—to improve patient outcomes; to change the way we think of–and manage–our own stories that involve chronic disease or another circumstance that has caused us to more deeply invest in healthcare; in changing our own outcomes and interactions within our care. And we all believe that we can be part of a bigger story, where the patient truly becomes the centre of care—not the system.

I guarantee Twitter will be on fire, so if you’re watching from home [or work… Not that I’m encouraging that :].], ensure you jump on that before the conference if you’re unfamiliar. [My soon-to-be-roommate, Karen, even tweeted last year in both Spanish and English—clearly she is magic. She’s also a sport psychologist and also has asthma, so we were totally meant to be roommates and I’m beyond excited to meet her.] And, while I could tell you what I’m excited for on the main stage, we might be here all day: so check out the program here and get stoked yourself!

Curious? Check it out. Register. [Remember, it’s free.]

And if you have questions, ask away below, or on twitter at #medx—we’ll help you out.

 

*Access to technology among providers in the Western world probably varies much on your geography/medical system. Just because it’s available, doesn’t mean that—for example—iPads are popping up in Canadian hospitals. Here in Winnipeg, electronic charting is sometimes either a) a new thing, or b) not even happening yet.  Which is among reasons why having international input and attendance at these conferences is so important: we can’t improve care through technology we don’t have access to—and, beyond financial constraints, knowledge of value in application is the other huge barrier to integrating technology to improve patient care, or improve the lives of all people. Knowing what I know, I shouldn’t have been shocked when my new-ish gynaecologist, Alaa, pulled up my pathology report on his computer at my first appointment. And I should probably stop being so shocked when I find someone I know wearing a Fitbit or using MyFitnessPal. And, for those of you Canadians who are in this boat with me, don’t worry: there are a handful of Canadians in the crowd, and we’ll do our best to get our voices out there, too.

guest post! – uncovering crohn’s disease: carly’s story.

In September at Medicine-X, I was blessed with the opportunity to meet many ePatients who I’d been in contact with online over the years. One of these beautiful people was Carly, a Masters of Business Administration student from Virginia.  The coolest thing about meeting people “from the internet” in person for the first time is that it already feels like you know one another, you go in for that first hug, and then you talk and hit it off like you’ve known each other forever.  Carly also provided me a ton of support, even if she didn’t know it, throughout the whole respiratory situation/prednisone ordeal, because she knows first-hand just how miserable it can be.

Carly lives with Crohn’s disease, an inflammatory bowel condition that can wreak a lot of havoc on a person’s digestive system, with treatments that can ease but not cure symptom flare-ups at the cost of a lot of side effects throughout the rest of the body.  Today, she’ll be sharing a bit of what Crohn’s is, and how you can be supportive to a friend living with IBD.

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December 1 through 7 is Crohn’s and Colitis Awareness Week. Crohn’s disease and ulcerative colitis (UC) are the two diseases that are also referred to as IBD (inflammatory bowel disease). IBS (irritable bowel syndrome) is not the same as IBD and is in fact a different condition. Combined, 1.4 million Americans suffered from these diseases, although the numbers may be much higher because in some cases it can take years for individuals to be diagnosed. Crohn’s and UC are autoimmune diseases that generally attack the digestive system, although many patients have joint pain, depression, anxiety and other symptoms as well. Crohn’s disease can affect the entire digestive tract, from mouth to rectum, while UC affects the colon only. These diseases typically involve chronic inflammation of the intestine (or other digestive area) and can be very painful. The treatments range from steroids (commonly Prednisone) to newer biologics just as Humira or Remicade. Patients may undergo surgery to remove highly inflamed parts of their digestive system, or even their entire colon. Surgery is not a “cure” though and can present its own problems, such as an ostomy, nutrition problems, or fecal incontinence. Most people with IBD are diagnosed in their teens, but children and older adults can also develop the disease. There is currently no cure for Crohn’s or UC.

Carly

Do you know someone with IBD? Here are some tips for being a supportive friend:

  • Like many other autoimmune diseases, IBD can cause fatigue and pain. Your friend may need to cancel plans, often at the last minute. Be understanding and above all, don’t take it personally. Keep inviting her to events, she’ll hang out whenever possible.
  • People with IBD may have varying dietary needs. This can be different for each person and can change depending on how active their disease is at the moment. Don’t be offended if your friend doesn’t eat something you prepare. If you are inviting them over for dinner or out to eat, take an opportunity to ask gently if they have any preferences or foods they absolutely cannot have. Don’t assume that the diet they were on a year ago is the same one they are currently on. Don’t be offended if the friend doesn’t want to do an eating-based event, they may be on a liquid diet or IV-feedings to rest their intestines.
  • Your friend with IBD is probably on medication that compromises his immune system. If you, or someone in your household is sick please let your friend know before you hang out. They may choose to wait until you are no longer contagious. It can be much harder for people on immune-suppressing medication to fight off illness like the cold or a flu and they’ve probably used up all their sick leave on IBD-stuff anyway.
  • A person with IBD is a person first. If you knew your friend before they got sick, remember they are still the same person. They may be more depressed from time to time, but they still have the same general personality and interests. If your friend can’t make it out to the movies, maybe hang out with them at home and watch Netflix. If your friend isn’t up for a visit, be sure to send emails and texts to let them know what you’ve been up to. Your friend does not want to feel left out or like a person who is only a medical specimen.

 

For more information about IBD check out CCFA (http://online.ccfa.org/site/PageNavigator/AdvocacyPage.html) and Crohnology (http://crohnology.com/blog/5-crohns-colitis-awareness-week).

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Thanks Carly!

Carly is a graphic designer, student, health advocate, Medicine-X ePatient, and bunny lover. Throughout the week, she’ll be blogging about life with Crohn’s at ChroniCarly, so please check out her posts to explore more about what living with Crohn’s can really be like.  You can also find her on Twitter at @CarlyRM and @ChroniCarly.

Also, Carly . . . when are we going to Chicago? :]