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Archive for May, 2013

Talking Travel with Lauren’s Hope.

I’m very happy to be guest posting over at the Lauren’s Hope blog today, about the importance of wearing medical alert jewelry while traveling.

“My job brings me on the road (and in the air) at least a few times a month, and for most of my business trips, I’m traveling by myself.  This is a mixed blessing, because while I’d love to have my family with me when I’m away from home, doing the toddler-on-the-plane entertainment shuffle can be maddening.  And when I travel, type 1 diabetes travels with me.  (It refuses to be left at home.)”

The thing I’m most excited about is that the crew at Lauren’s Hope is doing a Free Stuff Friday giveaway of some diabetes-specific and travel-friendly medical alert jewelry – you just need to leave a comment with your travel tip over at the Lauren’s Hope blog, and they’ll select three winners for some very handy bracelets.  (And this is not a ‘ladies only’ contest – they’re unisex bracelets, so men, get your travel tips ready.)

Here’s the obligatory contest rules information:  Enter to win* one of the products shown in my guest post by commenting on it with your own travel and safety tips! They can be anything from packing ideas to finding a local ER when you don’t speak the language. Remember to list the product you’d like to win. Full product descriptions are listed at the bottom of this page, and the three winners will be announced both on the Lauren’s Hope Facebook page and on the Lauren’s Hope blog tomorrow, Saturday, June 1st.

*Winners will be chosen at random. Please click here for full contest rules and regulations.

Happy (hot as hell) weekend, and I’m looking forward to seeing the travel tips!

Link Circus.

My email inbox is swollen with resources and links and stuff to share, so I’m plunking it all down here before I forget.  Yes, that’s my system:

  • I’ve been following Kelly Close’s experience on the artificial pancreas with great interest, and you can, too, by checking out her Twitter feed.  The photos and video are amazing.

  • (And if you sign up to receive the diaTribe newsletter, you’ll be eligible for a free ebook about Targeting a Cure.  Details here!)
  • Gorgeous post from Melissa at Sweetly-Voiced:  “To people with diabetes, the word complication is code for “quietly life-shattering.” It’s a code word for failure.”
  • There’s a new article in JDRF Countdown about What T1D Teaches, about the lessons we learn from diabetes.  “What you learn overall, as a person with T1D or as a loved one who cares for someone with T1D, touches so many aspects of your life other than the food on your plate or the insulin in your syringe. Living with T1D, in any capacity, gives a perspective and insight that doesn’t live within the box of T1D.”  which contributions from some lovely folks in the DOC, like Meri, Pete, Leeanne, Samantha, Kelley, Kate, and Sean.   (And this is my favorite quote, possibly ever:  “Screw this, I’m eating cake!”)
  • I can’t unsee it.
  • Californians debate over who can administer an insulin injection at school goes before the CA high courts.  As someone who was in grade school before 504 plans came into play, I’m amazed at what it takes to manage the complexity of diabetes in today’s school system.
  • “But for crying out loud, if you throw me in a race with 1,000 other people and I’m clad in sunglasses and a hat and essentially draped in anonymity and more-or-less looking like everyone else about to make a run for it?  I’ll break out in hives, riddled with fear and panic.”  More about my fear of public exercising over at Animas.
  • Non-diabetes related, and ripped from The Bloggess, but I had to share this comic because it scared the pants off me.  It’s safe for work, but might make you scream.
  • Are you app-happy?  (Or are you an apphole?)  Talking about some of the apps that I actually use, over at The DX.
  • I think what strikes me most about this video of a teddy bear surgery is the voice of the narrator.  He seems to feel every bit of the pain of the teddy bear, and at the same time, he doesn’t care in the slightest.  Totally memorizing.
  • 10,000 views equals out to  $10,000 donation to the Diabetes Hands Foundation – can you help?  Sharing the link is awesome, but watching it a few times on your own is even awesomer (<– mangled English), so get on that.
  • “I think for me, the hardest thing about diabetes is that there are no days off.”  Short but poignant birthday post from my dear friend Karen.

I’m off to forever delete that animated .gif cartoon thing from my brain, because since I’ve watched it, I haven’t slept.  Or at least not properly.

Summiting the Everglades.

Seb is a patient man, as well as an elite athlete.  And in August, he and I will be co-hosting the Greatest Awards Show in Diabetes as part of next North American Conference on Diabetes and Exercise, hosted by the incredible team at Insulindependence.

For more on how to enter to win the 2013 Athletic Achievement Award, check out the details here.  And if you are wondering, “Can I still submit, even though my achievements aren’t that ‘extreme,‘” don’t fret.  There’s an FAQ page you can read through for even more details.

But, for the record, you don’t have to summit Everest to be eligible.  Or the Everglades (which would be a bit easier to summit, I’d imagine – watch the video for the joke).  You don’t have to be participating in elite races or trot your little self across the Sahara desert in order to consider your athleticism an achievement.  Celebrating diabetes and exercise isn’t a right limited only to people who cross the finish lines first, or even at all.

Celebrating diabetes and exercise is about being inclusive and recognizing that our lives, our health, and our community as a whole are better for keeping our bodies moving. So get up.  Go run around a little bit.  And consider submitting a video TODAY, showing everyone how diabetes doesn’t have to be a conduit to chaos, but can be a catalyst for healthy change.

Turn your 5K into 5K.  :)

Take Good Care of Me.

Hi, Sara(aaah)!

Early Bird art, circa April 2013. The Hello Kitty period.

“I’m going to draw a picture of Grandpa.”

“Okay, so where do you start?”

She put her finger to her lips, pondering.  “How about … a head!  With two eyes!  And a nose with nostrils.  And some cheeks.”

Birdy pressed her pen against the paper, painstakingly drawing a circle for the head, and then two eyes, and a nose.  Her attention to detail shows me how much of the world she draws in through her eyes.

“So then … a neck?”  She draws a nice, loooong neck.  (Her people sometimes look like the kin of giraffes.)  “And then some shoulders and a necklace?”

“Does Grandpa wear a necklace?”

“No …” She thinks again.  “He wears a watch.  And then … hmmm … what else he has on his body?”

“Well, people have lots of the same body parts.  Two eyes, two ears, nostrils, teeth, a neck.  Look at mommy’s body – what do I have that Grandpa also has?”

She surveyed my body closely.  “We already has the eyes.  And the nose.  Oh, knees!!”  Pressing the pen to her notebook with satisfaction, some knees were added to her drawing.  “But not a Dexcom.  You have a Dexcom.  You has one but I don’t have one. Or Grandpa doesn’t have one.  You have it.”

“True.  But what does it do?”

“It goes ‘BEEEEEP!’ when you need glupose tabs or if you need some insuwin.”

“Right.  It helps me do my job.  Because what’s my job?”

“To take good care of me,” she says, concentrating hard as she gave Grandpa a second nose.

 

Hard to Capture.

With Twitter as the medium, there’s only so much that can be captured with only 140 characters at your disposal, especially when there are always so many juggling balls aloft.  Since it’s mostly intrinsic, these thought processes, I forget what parts are unfamiliar to people who aren’t living with diabetes.  After looking back at the Storify-version of my #dayofdiabetes experience, there’s so much there, but at the same time, there’s so much missing.

How can I explain how hard my family has worked to make sure we have insurance coverage?  And how the guilt of 16u of insulin left in my pump sometimes forces me to change the infusion set that’s in my skin in order to squeeze out the last of the insulin from a cartridge before changing that part out?  Insulin pump site changes aren’t always done “in full,” with the cartridge and cannula changed simultaneously.  There have been years in the last two-plus decades where we’ve paid nothing for insulin, and then pockets where we’ve paid the full cost.  Knowing how swiftly things would go bad if I didn’t have access to insulin is humbling.

Or the guilt that comes with this kind of mistake.  I very rarely forget to bolus for the food I’m eating, but that day, the toddler wolfed down her lunch and then was ready to bolt outside and play, and as I was cleaning up the neglected turkey and cheese sandwich, I polished off the second half of it.  And then promptly forgot to bolus.  “Frustrated” doesn’t really begin to touch the rage and guilt that sets in at this point.  I hate that there is so much about diabetes that remains out of my control, but when I can pinpoint exactly where my day went off track and it’s the result of something I forgot to do?  I have a hard time with that.  The guilt that ends up folded into so many parts of the diabetes decision making process can be intense, and relentless.  “I’m high because I was stupid and forgot to bolus for something that clearly carried a pile of carbs.”  If it were anyone but me, I’d tell them to just correct the blood sugar and try to move past the guilt part – “There’s no point in feeling guilty!  That just adds to feeling rotten.  Correct and move on.  Keep trying your best.” – but I’m not able to take my own advice.

It’s not simply guilt that’s hard to capture; sometimes it’s hard to really explain why a moment might make me so freaking proud.  Like the fact that a gross high blood sugar derailed me for a couple hours, but I still made exercise part of my day.  Exercise used to be something I actively (ha?) avoided, but slogging my way to the gym even though I felt crummy, and then leaving feeling better, and empowered, and more in control makes me feel proud.  It’s not a big deal, and it’s not a victory that anyone else would notice, but it was a good moment for me.

Same with graphs like this.  I have worked hard to make sure my overnight basals are solid, and that I’m able (for the most part) to go to sleep at an in-range blood sugar and wake up in the same in-range ballpark.  This isn’t an accident -  this is a most intentional moment.  It’s hard to capture why a Dexcom graph that’s between the lines matters so much because it seems like it’s the result of a block of time “without incident.”  It’s hard to explain how much work goes into keeping these moments as incident-free as I can manage.

A day with diabetes looks a certain way, all tucked into Twitter with a neat little hashtag.  But it’s hard to capture what we really do every day, as PWDs or caregivers.  Outside of this DOC-bubble, people wouldn’t understand high-fiving over a blood sugar result of 180 mg/dL (but did they know you were 230 mg/dL an hour earlier?).  Or why a person with diabetes would eat sugar tablets (but did they know your blood sugar was 34 mg/dL?).  Or why a “sugar-free” pie still requires carb counting and insulin (“But it’s sugar-free!”).

Participating in #dayofdiabetes was eye-opening for me, because I realized I didn’t have enough API to handle updating Twitter as much as I needed to, to account for all the times diabetes crossed my mind throughout the day.  And then again, I realized how many times diabetes crosses my mind for simply an instant, letting me continue forward in a day that, in reality, wasn’t owned by diabetes in the slightest.

A #dayofdiabetes.

There’s not much of an option for a day without diabetes, but sometimes the friends and acquaintances I’ve made through social media aren’t as acutely aware of the food math and thought process behind each insulin dose decision, so I’m jumping on the #dayofdiabetes bandwagon. Chris Snider at A Consequence of Hypoglycemia took up the challenge of “live-tweeting” a day with diabetes, and then Storify’d it, giving readers a 24hr glimpse into a full day with T1D.  I loved reading his Tweets, and after following Cherise’s go a few days later, I wanted to join in the storytelling.

I took this concept for a spin back in 2007, when I tried on my first CGM (the Dexcom STS, which was only cleared to work for three days and wasn’t waterproof, so you had to slap this giant plastic bag-type shower patch over it so you could clean yourself).  There have been some “all day diabetes” Twitterers – didn’t Bernard do it on World Diabetes Day one year? – but this new iteration will hopefully inspire other PWDs and people with different health conditions to share their story.   (My first Tweet ever was about the Dexcom sensor – does participating in #dayofdiabetes mean my social media matrix may fold into itself today?)

I started my live-Tweeting journey this morning, and I’ll be working straight through to tomorrow morning.  Hopefully it will be boring as can be, with numbers sorting themselves out all happily between 80 and 120 mg/dL, but even a day of in-range numbers comes as the result of a lot of work, and a lot of little, nit-picky diabetes management moments.  I definitely don’t log every diabetes-related physical and mental task throughout the day, but for the sake of the experiment, today I will.

A day of diabetes, running live through Twitter for the day.  If you want to follow along for the day, I’m at @sixuntilme.  If you’re interested in telling your story for a day, adopt the #dayofdiabetes hashtag as though it were a sweet, adorable, lumbering puppy scampering towards you on impossibly uncoordinated legs.  And if you want to take a look at Chris or Cherise’s live-Tweet sessions, pop over to the Day of Diabetes Tumblr account for a snapshot view.

How to Have Sex with an Insulin Pump.

Don’t.  For the love of god, do not have sex with your insulin pump.  It’s an expensive insulin delivery device, and it’s not to be trifled with.

But if the Google search you made was to find out how to have sex with the insulin pump in the vicinity, then that’s a whole different take.  Because that topic comes up a lot in the women’s discussion groups that I’ve taken part in, and it was a particularly hot topic at the Diabetes Sisters conference earlier this month.  The same sorts of questions come up every time, from new pumpers and people considering adding a diabetes device to their management plan:

“How do you deal with wearing a device when you’re trying to be, like, naked?”
“Do you disconnect during intimacy?”
“Does it get in the way, physically?”
“Does it get in the way, emotionally?”

(And, for the record, I love that these questions get asked.  And the best part is, they’re asked in rooms full of women who have either met for the first time that day or haven’t even formally met yet.  Diabetes, for all its chaos, does bring a certain level of discussion comfort and camaraderie, and I love that.  Love.)

Insulin pump = sexy time?

“How do you deal with wearing a device when you’re trying to be, like, naked?”

This was a tough hurdle for me, because I went so long without wearing any devices.  Diagnosed as a kid and not pumping until 2004 or CGM’ing until 2006, I spent a big part of my diabetes life without any external “symptoms,” so to speak.  Initially, I needed to be comfortable with my device(s) before I could expect anyone else to be, and that did take some time.  But I like the “no big deal” philosophy to these moments.  If I give the impression that these devices aren’t a big deal and should be taken as a small part of the bigger whole, then I hope my partner will follow suit.  For the most part, wearing a pump and a CGM isn’t something I feel self-conscious about, but being honest, there are days when I want to rip them both off and throw them across the room in pursuit of feeling truly ‘naked.’  I don’t like having these artificial bits and pieces stuck to me all the time, but I try to keep tabs on the bigger picture, which is my overall health.  Sounds cheesy, but it’s the truth.

“Do you disconnect during intimacy?”

Personally, I do.  I don’t like having anything connected to me during those moments, because it becomes a distraction.  I like feeling like diabetes is a back burner issue in the bedroom, or at least as much of one as I manage.  When I first started pumping, disconnecting felt awkward because I didn’t know how to make it feel sexy (“Oh, let me just slip out of my medical device and into something more comfortable,” never had the right tone to it.) and it took me out of the mood a little bit.  But once I was comfortable pumping, in all capacities, I was comfortable with this part, too.  Disconnecting is kind of like my “mating call” now, which is a bit strange but also ‘no big deal.’

“Does it get in the way, physically?

Not for me, because I’m already disconnecting.  And I take care to keep my devices as out-of-the-way as I can manage, keeping infusion sets on the back of my hip and sensors on my thighs, leaving my abdomen feeling “normal.”  Sometimes it gets in the way in the initial moments, like when it’s being disconnected and I’m trying to figure out where to stash it for the time being (bedside table? under a pillow? on the floor? It’s a tough device, but I’m not willing to throw a six thousand dollar medical device onto the floor with reckless abandon.), but for the most part, once it’s disconnected, I forget about it.  The trouble is sometimes remembering to reconnect afterwards.  Some women set the alarm on their pump to remind them, but I’m not even close to that organized.  Others set reminders on their phone.  I’ve never gone to bed without reconnecting, so I’m going to pretend that I will always remember?

“Does it get in the way, emotionally?”

Yes, at least enough so that I can’t outright say no.  Can’t lie – not being able to be completely naked (sans pump site and CGM transmitter, for me) is a weird feeling, and I always feel like I need to give Chris a head’s up as to where my devices are currently connected.  “Be careful of the site on my right arm,” or “My sensor is on the left,” sort of directions feel anti-intimacy, for me.  But that’s where the relationship with my husband comes into play – he makes me feel like diabetes is something we can openly discuss, so it makes device topography easier to disclose, knowing he’s not creeped out by this stuff.  The emotions about this sort of thing ebb and flow, just like emotions about diabetes in general, but it’s most important for me to be able to talk about it with Chris.  Being part of a team that allows for the emotional highs and lows helps keep devices from getting in the way, mentally.

You can have sex with your insulin pump … by your side.  Or on the bedside table.  Intimacy with diabetes requires a little forethought in addition to the foreplay (terrible pun), but it can be done.  Just don’t shag your actual pump, or you could end up with a different set of issues entirely.

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