Friday, August 31, 2012

Insulin Break Dance.







Thanks go to Gina for the Photoshop assist, and also for humoring me when I asked if she could "put an insulin bottle on some cardboard, like it's breakdancing".

Tuesday, August 28, 2012

The Bright Side (Of Diabetes).

I was pretty crabby yesterday, so, like I do, I decided to turn it around by making a list of things to be happy about. Or, at least, things that can be considered "the bright side" of having diabetes.

Do any of these make YOUR list?


About those scarves: I bought those from Hanky Pancreas; they were not freebies, and no one asked me to mention them. They also aren't cheap (around $40 a pop), but for good reason - they are extremely well-made and cleverly designed. I am in love with mine.

Monday, August 27, 2012

Things To Love.

Even with all of the really big items on the "this is horrible" list of living with diabetes, there are a few things I relish.

One is the reaction I receive when using the iBGStar to check how the ol' blood is doing in environments like bars. When you're three sheets to the wind, things like glucose meters that attach to an iPhone will BLOW YOUR MIND OFF.

"What are you doing? ... wait. Wait, is that a meter? It's part of your phone? There's an app for that?!?"

Indeed, tipsy stranger. There is an app for that.

(Side note: the next time someone asks, I'm telling them that it tests my blood alcohol level and will be taking a mental video of their reaction for replay when I need something to giggle about later.)


One more thing to love: waking up to a between-the-lines graph after a night of beverages and dancing.

Yesssssss.

Friday, August 24, 2012

Diabetes Art Day.

It's coming! One month from today!


I've participated the last two years - found here and here. Will you join me again next month?

Ripped directly from diabetesartday.com:

Diabetes Art Day is a web-based initiative for the Diabetes Online Community to “tell a story” about life with diabetes though creative visual expression. It’s a way for us to tell our stories so we can connect and share with each other and with our loved ones. It’s a way to generate diabetes awareness outside of the DOC by sharing artwork on Facebook, Twitter, blogs and community websites. Diabetes Art Day is for people young and old with any type of diabetes and their families, so children, spouses, parents, siblings, or anyone who is affected by diabetes can participate. For this one day, you’re encouraged to break out of your linguistic comfort zone, bust out some art materials, and make a piece of artwork – painting, drawing, collage, sculpture, an installation piece, a mixed media something or other, or whatever you can imagine. Whether you have lots of experience making art or none at all, Diabetes Art Day is for you to show the world what it’s like to live with diabetes in that “a picture is worth 1000 words” kind of way.

On September 24th, create a piece of diabetes-related art and upload it to the Diabetes Art Day gallery (and your website, blog, Facebook page, Twitpic, whatever...)! Let's do this thing!

Wednesday, August 22, 2012

Dodge, Duck, Dip, Dive, and Dodge.

Diabetes sometimes feels a lot like dodgeball, except no one is wearing kneepads and you're trying to dodge glycemic excursions instead of a rubber ball to the face. Which, actually, isn't a bad metaphor for that feeling.


I'm glad you're all on my "team", especially on the days I'm not playing my best.

Tuesday, August 21, 2012

I Need That.


I know, I know... I said I was done talking about FFL. (I guess I never am?)

As I was cleaning out the photos stored on my phone last night, I found this gem that I had forgotten to share. It was a cheat sheet that each member of the staff at breakfast had stowed away in their clipboard so they'd know (by color of our bracelets) what our needs might be.

I want this for real life. What's the color bracelet that signifies, "Needs caffeine, less sass, and a decongestant that won't alter Dexcom results"?

Monday, August 20, 2012

Dexcom MacGyver.

When I noticed this:


I thought I'd try something new. So Billy:


and I went here:


to find some of this.



Wielding little more than some aluminum foil and a Q-Tip, I got to work.



As it turns out, eyelash glue lives a double life as a Dexcom adhesive repair tool. Roll the Q-Tip around in the gooeyness, swipe it under the flappy adhesive, and press down for several seconds. Then, and this is important*, don't move that area for a few minutes.


MACGYVER'D!

*Note: I actually found that this didn't work well (and I needed tape afterall) for where I had my Dexcom sensor, which was precariously close to my armpit. I think this would work well in a less high-traffic area (read: a leg or hip, or maybe just more to the outside of an arm), and also if I had kept my arm stationary for a few minutes to let the glue set, so I'll be trying this again. Someday.

Friday, August 17, 2012

You Can Do This: Joe Solo.

Last year was the first time I became aware of a guy named Joe Solo. (Actually his full last name is Solowiejczyk - much like my own name, it's often mispronounced.) My introduction came during the Friends For Life conference last year, and as it was my first time there, the whole thing was new to me. I didn't know that CWD gave out awards each year. I also didn't know why the room of 3,000 or so people suddenly rose to their feet during the banquet dinner one night, generating loud applause peppered with "Wooo!"s and whistles.

"Who is this? I don't even... but everyone else is clapping. Okay." And up I stood, clapping along with them, for this stranger on stage. It was later mentioned that he had marked 50 years with type 1 diabetes earlier that year, so okay, that's pretty cool, but still - I was perplexed. Why were my friends so in love with this guy?

Then I attended what I believe was called "Diabetes Burnout" - a session Joe led. Literally within the first minute of his opening remarks, it hit me. Oh. This guy. This guy speaks my language - including the bad words! I love this guy! And I got it. It happened again this year; I chose a session that ended up not being what I expected it to be, and taking the suggestion that was presented to us on day one of "if you're in a session and you don't dig it, it's okay to get up and leave and find one that suits you", a few friends and I headed to Joe's session. Within the first ten seconds of entering the room, I felt as though I had found "home".

It's not enough to tell you that he "gets it". I'm not sure it's enough to tell you that he might be one of my favorite PWDs to listen to; that the wisdom he drops will blow your mind, if you haven't heard it before; that he is what I think the epitome of the spirit behind You Can Do This is. He's not perfect, and he realizes that. He celebrates that. And you know what? If Joe can survive type 1 diabetes for 50+ years with the attitude and personality he continues to have - there's a lot of hope for the rest of us.


Wednesday, August 15, 2012

Simon Says "Temp Basal".

It occurs to me that when I'm able to successfully program a temp basal through my clothing, instead of having to pull out my insulin pump to look at the screen - and the sounds on my pump are disabled, which means I'm just counting button presses - it's a lot like beating this guy:


...and it makes me wish that Barney Stinson were a real person, as immediately afterwards I would meet him for a drink because HIGH FIVE WHAT IS UP.


Tuesday, August 14, 2012

That's Just... Love.

Saturday morning was an early one, as the alarm went off at 4:30 am. Why so early? It was JDRF Walk Day, yo!



With Jess' help, we brought the You Can Do This Project to some of the hundreds of families in attendance. We spoke with kids, parents, and adults alike. We met a mother whose son had been diagnosed just three weeks ago - they were there to meet other families, and to see what insulin pumps were all about. We watched the light click on behind people's eyes when we transitioned from "people are telling me about something" to "people who know" - as soon as I'd spot a pump on someone, I was quick to gesture to my own. All of a sudden, they were much more interested in what we were saying.



It was also fun, as it always is, to have a buddy with diabetes on your team. When an adult with type 1 mentioned how difficult it was for her to battle post-breakfast highs, Jess and I clicked on our Dexcom receivers and showed her that she wasn't alone. (Oh hi, 323 mg/dL.)

We also encountered a woman at our table who was just acting... funny. Her words weren't making much sense; her eyes darted all over the place. She spoke louder than necessary, even with the crowd. A Medtronic pump was clipped to her pocket. "I should really do [a] test, but I don't have my glucometer. Left it at home", she mumbled, and we got to work: Jess quickly offered, "Do you want to use mine?", and the lady readily accepted. While Jess lanced the lady's finger, I fumbled through my bag for glucose tabs.

A 44 mg/dL flashed on the screen. "Oh. 44. That's low", said the woman; acknowledging and then immediately dismissing the information. She picked up a marker and began writing on one of our marker boards.

"Hey... why don't you eat some glucose tabs first, okay?", one of us cheerfully suggested. I thrust a vial of tabs in front of her; the top popped open and ready to go. She stuffed two tabs in her mouth and chomped away; trying to make conversation at the same time.

"Oh! These are actually good! What kind are these?" (They were GlucoLift Wildberry - I still had a sleeve of them in my purse from FFL.) Just then, her daughter (or at least someone that age that knew her) walked up, and wanted to know where to order the tabs. (Amazon, yo.) I was still sifting through my purse, trying to find more glucose for her - a bag of fruit snacks. Down they went.

Whether she started feeling better or not, we weren't sure, but she was ready to take off. "Thank you so much, you guys. Thank you. I needed to test, and you even poked my finger for me. Thank you. That's just... love. You guys are so nice. Thank you."

That pretty well summed up the feeling all morning - love.


Friday, August 10, 2012

Chasing After The Car.

Did anyone else catch the premier of Matthew Perry's new TV comedy, "Go On", Wednesday night? If you didn't, here's the gist: Matthew plays an "irreverent but charming" sportscaster who has recently lost his wife in a car accident, and he's required by his employer to attend ten sessions of a support group designed to help him deal with that loss. The plot seems to revolve around the contrast of the support group leader's method of sharing feelings and talking through emotions, and Matthew's character's idiom: "Enough talk, just go DO something". The pilot finds him viewing the sessions as a waste of his time: he just wants to get back to, and on with, his life.

At his second session, he's paired up with a young man who brings out his phone. As he flips through some images on his phone, he tells Matthew about the Google Maps car with the camera on top of it, and how people sometimes follow this car and engage in some sort of antics. He shows images taken from the car of people in costumes; jumping, laughing, enjoying themselves. The young man then shares that this was something his brother showed him one day before he fell into a coma - the very loss he's there to deal with.

I'm telling you about this because of a moment at the end of the episode. We find the group assembled, with Matthew's character finally sharing something about his own personal loss. He abruptly stops, rises from his chair, and proclaims that they all need to go outside right then: it's the Google Maps car, and we suddenly find the group chasing after it with toy swords, funny hats, and plastic body armour. They're playful; they're laughing. You can almost see their respective weights lift off of their shoulders, even if just for those few moments. They are being juvenile, together, and the catharsis of that behavior shines through. They are able to shift that burden off of themselves, even if only for that minute.

I think that's why, when a group of us who have diabetes (or a very personal connection to it) get together, things get pretty silly. It's why we love memes. It's why we're often irreverent and why we need humor in the face of our own sorts of loss.

We're having our own "chase after the car" moments.

I've said it before, and I do mean it: levity is as essential to my health as insulin.

*Unrelated to this post, but still relevant to your interests, probably: head over to the You Can Do This Project site and watch the video published today. As many others who attended the Roche Social Media Summit can attest, Josh Bliel made quite an impact. Also, I'm pretty sure this is the first video contributed to YCDT by someone with no personal connection to diabetes - so there's that.

Thursday, August 9, 2012

Waiting For The Parachute.

 "So what do your lows feel like?"

It's a question I've been asked many times in the past 26 years. I've been asked this by nurses, doctors, family, friends, and strangers. While I don't think that my actual symptoms have changed that much, the words and images I use to describe them over time have.

As a child I associated hypoglycemia with feelings like "weak, shaky and tired". It was a very distinct feeling; one where I wanted to eat and eat and eat and then sleep until I felt better. I knew that feeling, but putting it in words was difficult. I used the words I had in my verbal arsenal. (A sentence which, as a child, would have been phrased "I used the words I knew." I love being a grown-up with a thesaurus.)

Fast forward to adulthood: descriptions and metaphors aplenty.

They come in stages, those lows. I might feel a little loopy, hyper, or energetic - which then transitions to feeling a bit like I'm swimming through the air around me. My body vibrates. As I continue to drop (and this ended up being my answer to the above question, the last time I was asked it), it begins to feel similar to being drunk, minus the fun part. In my mind, I know exactly what's going on and what I need to do, but I often can't get my body to follow through with those actions, or my mouth to form the words my mind intends. I'm lucky to get out a short, staccato sentence: "I need juice". My brain sounds the alarm, screaming "YOU NEED SUGAR RIGHT NOW!!!"; it pleads with me to go eat the kitchen, if only my motor skills would show up for duty.

I know what I need to do and say, but my physical self can't translate it.

And when my blood sugar continues to drop after I've already eaten what I need to? I imagine it's much like the freefall in skydiving, before you engage your parachute. It's a swift descent to a very hard landing, and you're doing everything you can to not reach full-scale panic mode. Adrenaline surges. My rational mind knows the chute will engage, but my primative self is scared out of its mind. Even my Dexcom CGM graph resembles that freefall, sometimes sending me deeper into panic. The tumbling seems to pick up speed with every passing second. I repeat to myself, "You're fine. You're fine. You're going to be fine."

And I know I will be fine - once that parachute catches some air.

Wednesday, August 8, 2012

LivingVertical.

On Tuesday morning - the finale of the Roche Social Media Summit - our group was given a chance to hear from the rock climbing, type 1 diabetes-having, and all-around inspiring Steve Richert. Together with his wife Stefanie, he founded LivingVertical - an organization that aims to "empower people with diabetes to overcome daily challenges" by showing what you can do (hat tip!) with diabetes. Project 365 is a self-imposed initiative that Steve and Stefanie signed on for - a documentary they're filming that requires Steve to climb every day for a year. It means that they quit their jobs, sold their home and most of their worldly belongings, and packed up their car to go live on the road while making the documentary.

Dude. Yeah.

Here's a snippet of Steve's talk, along with a bit of the Q&A session:




He was also nice enough to agree to film a You Can Do This video, and share some images and climbing footage to go along with it:



A little fundraising call-to-action was announced as well: Roche has gotten behind what he's doing and will be donating $1 to Steve's foundation, LivingVertical (up to $15,000) for every "like" that this video gets. Head to www.stevesmountain.com to find out more about Steve and his journey, and follow their blog at www.livingvertical.org.

Go Steve, go!



Tuesday, August 7, 2012

Semantics.

"Going for a ride" = exciting.


"Going for a ride" = exhausting.


Monday, August 6, 2012

Everything Is Amazing.

My time spent at the Roche Social Media Summit gave me a lot to think about.

Let me preface this by saying that I'm grateful to have been one of the thirty-ish people invited to attend. I didn't have to pay for any of my travel expenses to get there, for my hotel stay, for the food I ate while there, for the minor league baseball game that the majority of our group attended, or for any of the goodies in my swag bag. It makes me feel incredibly lucky to have the opportunity to do something like this, and I remember well how it feels to be on the outside of what can sometimes appear as a "party with my friends". I've been in a near-continuous state of amazement for the past two years that anyone cares to know what I think about anything.

Some of the discussions at the Summit had great benefit, both for Roche and for those members of the DOC. The speakers Roche brought in were phenomenal. The brainstorming we did produced some productive ideas - at this point, still just ideas. I hope they blossom into something more than just words.

Advocating, at its core, is about people. It's about relationships. It's about striving for better outcomes and health; for helping things to get better for us, and for others. People choose to advocate in ways that are comfortable and meaningful for them. They do what they can with what they have, and often strive for better than that. That's how it should be.

When I found the DOC in 2009, the "people getting invited to stuff " thing was already the norm. Relationships between influential patients and pharma companies had already begun to form. While these events (and who went to them) weren't what I was mainly concerned with (and still aren't), they were on my awareness radar.

What I've been grappling with lately, and what I hope you'll pause to consider along with me, is what I perceive to be a shift in priorities. I think it's good to have events that bring patients face-to-face with both each other, and with those whose business it is to provide the market with tools and options that can help patients manage their health. What makes me uncomfortable is how we do that., and it's a two-fold dilemma.

The first is how these events are handled. Was it lovely to be able to stay at what was probably one of the nicest hotels I've ever been in? Yes. Was it likely the best use of Roche's money? Perhaps not. What if we bare-bones this thing? What if we all stayed at a Holiday Inn and used the surplus to do some social good - donate it to a charity, pay for some sort of community-enhancing effort, funnel it into a patient assistance program? Would we still be able to accomplish something; would we still have those same conversations? I sure hope so.

I hope I'm not the only one that would go along with this idea.

The second part is less easy for me to articulate, but I'll try - with a hat tip to Louis C.K.


I want all of us in this community - and this includes me - to keep that phrase in mind.

"Everything is amazing, and nobody's happy".

I want us to remember this phrase when we worry that our blog hits, Twitter followers, or pageviews aren't "high enough".

I want us to remember this phrase when we are so ridiculously lucky to be at an event that so many thousands of others can't afford or weren't invited to, and choose to complain, in a space where so many of those thousands can see, about how bored we are.

I want us to remember this when we don't get the reaction from others that we think we deserve; when we become frustrated with technology; when we believe that the world owes us something simply because our lives and health are not in line with what we expected.

When we do these things as advocates, I hope we can check ourselves (before we wreck ourselves): does this go back to people, or is this just about me?

Do you know how lucky we are to be on this Earth, right here, right now? We have machines that can connect us, FOR FREE, to millions of people all over the world - and we can talk about whatever we choose. We have tiny computers that can fit in the palm of our hands, which by some combination of magic and science can tell us what our bodies are doing. We have insulin to keep us alive. We can consume tiny bits of medicine that help our bodies function. We can use a seat in the sky to get us anywhere in the world we want to go. We are here - NOW.

We have language and the means to use it to comfort, console, inspire, and enlighten each other. For as much as there is wrong in the world right now, there is so much right. There is so much good. And when we focus on each other - on what we can do to love and help others - we can become something much bigger. Much better.

We have each other.

I hope you remember how amazing that is.

Come Say Hi?

Again this year, I'll be working at a table at a JDRF Walk:

JDRF Walk, circa 2010

But this year marks something new - I'll be there to spread the word about You Can Do This. (!!!!!!)

It will look something like this, I'm sure.

I'll be at the Omaha JDRF Walk on August 11th (that's this Saturday - I know, short notice) - so if you're going to be there, please come say "Heeeeeeey!". Or just "Hi". Either one.

I'm looking forward to spreading the word on a local level, and I'm hoping to do that marker board thing again - this time with some snazzy new boards, since the ones used at Friends For Life were borrowed. (And these were clearance priced at Kohl's. I might have shrieked slightly when I saw them. What? IT'S WHAT I DO.)

HECK YES! PERFECT!
Will I see you there?

Friday, August 3, 2012

The World Needs More Dancing And Puppies.

As I climb my way out of the Stuff I Need To Catch Up On After Traveling Vortex, I've taken a bit of a writing breather here. I'll be back at it next week, but until then... semi-narcissistic bullet points.

  • You'll find a guest post from me about diabetes and social media over here.
  • I was able to record a couple of You Can Do This videos while at the Roche Social Media Summit this week, and when you combine those with the videos still left to share from FFL, my head explodes a little bit. Don't worry; I'll clean it up. (But seriously - the videos are awesome, and I'm excited to get them ready to share.)
  • Speaking of the Summit, I want to share a couple of things (at least) from what I experienced there - it was my first time attending, and I was grateful to be among so many good people doing good things. More on that next week.
  • My Verio meter seems to have gone missing. At what point do I put its picture on a milk carton? I can pay you in test strips... that I can't use, if I can't find the meter... 
  • Have you ever met a sport team mascot that could booty dance? I have.

  • I actually can't remember if I've mentioned this here yet, so forgive me if I'm repeating myself...
    a couple of months back, my friend Chris made me aware of a scholarship program for a conference I'd never heard of: Medicine X. It's an academic conference taking place this September, created and run by Stanford University (I KNOW RIGHT) and designed to address "the intersection of medicine and emerging technologies". I ended up being selected as one of the 35 e-patients who will be receiving scholarships to attend - which is way, way cool of them to work so hard to get the patient voice represented. This week, an e-book was released, introducing the e-patients that will be at the conference. (My section is essentially a rephrasing of my scholarship application.) I'm honored to be listed amongst such great company!
  • And lastly, the world finally has a 24-hour Corgi Cam. Happy Friday.

Wednesday, August 1, 2012

The Start.

I don't even know how to put into words what I'm feeling today.

Grateful, amazed, and determined are all I can come up with right now. So, so grateful above all else.

Thank for your continuing support of You Can Do This - things are just getting started, my friends.

http://www.diabeteshandsfoundation.org/2012/08/2012-dhf-seeds-recipients/