Video: Children Diagnosed With T1D Under 2 Years Old.

We interrupt this not actually scheduled blog break to tell you that there's a new group video today from the You Can Do This Project.

In case you need a reason to watch it, here are a few.

"We went in [to the pediatrician's office] and I told him that I thought my son had diabetes, and they told me that he did not - that children that young don't get diabetes. They checked him for strep and flu and both came back negative. They tried to send me home, telling me that he had just a virus and that the drainage was making him thirsty, but I knew there was something wrong."

"The doctor did a urine test [at her one year Well Child appointment] because she had a history of UTIs. Fortunately there wasn't any bacteria in her urine, but they did find sugar. The doctor thought this was an error, so they did a repeat test and again found sugar. There were really no symptoms."

"He had started breathing kind of funny, so my husband and I took him to the emergency room. We were told he had Bronchitis and he would get better. By Thursday of that week he was not able to stand on his own anymore, and he really could not stay awake. We took him to a children's hospital and he was finally correctly diagnosed with type 1 diabetes. His blood sugar was around 500." 



You'll hear from five parents whose children were diagnosed with type 1 diabetes before they turned two years old. My hope is that if you are already a parent of a young child with diabetes, you'll find some comfort in knowing you aren't alone. I hope the road seems less bumpy over time as your fellow travelers point you to the less turbulent parts of it. I hope that feeling of "me, too" relieves even the slightest bit of the anxiety, fear, and discouragement you may know.

My other hope is that conversations like this one help spread the word on what the symptoms of type 1 diabetes are. As these parents explain, babies can't tell you how they're feeling. It becomes very, very important to know the signs - it could save a child's life. If a child you know is experiencing any combination of the list below, please consult with a doctor immediately.

• excessive thirst
• frequent urination; soaked diapers
• drowsiness and lethargy
• increased appetite
• sudden weight loss
• fruity, sweet odor to breath
• heavy, labored breathing       from JDRF.org

A Minute.

Oh. Hey. Right. Blogging.

Things have been quiet around here (and by here, I mean "me on social media") lately, for a few reasons.

This is one:




Because when you say things on a stage that you had tucked away so deep inside yourself and had planned to just let collect dust; when you are so honest and earnest on that stage that moments after leaving it you have to escape the conference for a safe place to cry and shake and vibrate and then somehow collect yourself to finish out the day; when you invite the world into your head and your heart and know that it will live on the internet forever and ever...

you need a minute.

I'm taking several.

Exasperation Station.

Some days I really love my medical devices.

Can we talk about how terrifyingly Riddler-like that face is?

Today is not one of those days.

While my basal has been delivering just fine (I was shocked to see a mostly-straight line from overnight, hovering around 95), my bolusing ability has been stunted by some fault within my insulin pump's lineup. Ever since putting this cartridge in on Wedneday night, my pump has not been able to fully deliver a single bolus. Not of 10 units, not of 5 units, not of 2 units. No boluses.

WHY CAN'T YOU JUST WORK YOU EXPENSIVE LITTLE MACHINE.

I called Tandem's tech support, and their troubleshooting protocol asks me to disconnect at the leur lock to see if insulin is delivering before it gets to the tubing.

Here's the kicker: I see why they want to know this, but if I do this process I lose not only the 23 units of insulin in my tubing (I use the really long tubing), but also will have to prime all of those airbubbles that will be introduced into the tubing again, out. That's easily 53 units of insulin I'll be wasting, and I feel very uncomfortable with that thought. I don't like wasting such a precious resource. 53 units is more than a day's worth of insulin for a lot of people.

If the design of your medical device requires me to squander my limited supply of the only drug that can keep me alive, you may want to rethink that design.

So I guess I'll be over here injecting for each meal and snack until this cartridge runs out.

Hashtag first world problem.

UPDATE: According to the customer service rep I've been working with, Tandem Diabetes Care is sending me a new "goodwill" box of cartridges and a prepaid shipping label so I can mail back the faulty cartridge for "investigation purposes". Good on ya, Tandem. Let's hope these work.

Lightning Speed.

Just a wee little update on the wee little Rabbit:

Who in the span of a few days has become more "kid" than "baby", to my eyes.

(Also, please ignore all of the stuff on my kitchen counter. Cleaning hasn't been a priority.)

Medicine X 2014: People.

I spent four days on the Stanford University campus in Palo Alto, CA for the Medicine X conference, and what, now I'm just supposed to go back to "real life"?

Emotions, energy, and spirits ran as high as my blood sugar. The #MedXHangover is real.

Every conference. Every time.

So much to say, so little time to blog.

What stands out to me most, in this moment of reflection:

• The swift manner in which handshakes gave way to hugs
• A purposeful and welcome focus this year on mental health
• The epitome of a "powerful patient story", this Ignite talk from epatient and fellow T1D Erin Gilmer - seriously some of the most gut-wrenching three minutes of the conference, and she wasn't even there in person which speaks to how much weight her words had/have
• How grateful I was to see Scott Strange in the hallway immediately after I left the stage to bolt to a safe place to "come down", and for the huge bear hug he gave me before I erupted in tears
• My ah-may-zing roommate Carly, who is a large part of the reason I had such a positive experience
• Finally meeting super-human Susannah Fox in person
• Seeing our diabetes community represented so well in sessions like Dana's (and Scott's) #DIYPS and Doug's Databetes project
• How truly valuable the ePatient Advisory Board was to the ePatient delegates/scholars, and how generous they were with their time, their hearts, and their energy (to the point that I'm concerned that they all need a week-long debrief/spa vacation/nap to recover properly)

The common denominator that made this year's MedX so great? People. Their stories. The way "diabetes patient" and "arthritis patient" and "crohn's patient" all just became "patients" in one community. The way patients and physicians and students alike voiced their concerns, thoughts, questions, and visions. I saw so much respect; so much curiosity; so much drive.

I'm still processing it all, but this Just Talking podcast does a great job of capturing some ePatients' thoughts on the conference in a more crowdsourced kind of way.

What Diabetes Awareness Month Feels Like to a PWD.

Also answers to "American Diabetes Month", "National Diabetes Month", "National Diabetes Awareness Month", and "November".

Diabetes Stigma on Mashable.

When I think about what we can do to improve the psychosocial health of people living with diabetes it always comes back to this, for me: share your story. Even when it feels like you're saying the same things again and again, keep sharing. Keep talking. Keep showing. Keep living. Don't give up.

This is how we change the world for the better.

http://mashable.com/2014/08/27/diabetes-stigma/

Giveaway: N-Style ID.

UPDATED: Congratulations to the winner - April! This contest is now closed.


When I was a CWD (child with diabetes) in the late 80's/early 90's, I had two options: I could wear the clunky, thick, stretchy metal bracelet whose links always seemed to trap my arm hair (and then rip it out when the bracelet shifted on my wrist), or I could sport a large (to a child) medallion around my neck that announced by way of bright red caduceus: OH HAI I HAVE A MEDICAL CONDITION!

And when I was a CSWD (college student with diabetes) (that's not a real acronym), I wore no external indication of my diabetes whatsoever. This continued into adulthood until I attended the Friends For Life conference for the first time few years ago, where it seemed that so many of the people I'd befriended and respected in the diabetes online community were being the sort of responsible adult that I merely pretended I was - they wore ID bracelets! And there were stylish options! Alright, alright, fine, I'll get one.

Or make one! (A medical ID joins my insulin pump and Dexcom CGM as Things I Didn't Want To Wear But Then I Saw My Friends With Diabetes Wear Them So I Guess I'll Try It.)

I still have that original bracelet; the engraved nameplate often switched between bracelet options. I thought I'd be annoyed with making my diabetes "visible" by wearing medical jewelry, but I'm not. It actually feels nice to know there's a little bit of "here's what's up" hanging out on my wrist in case I get into a situation where I can't speak for myself. And while I once believed that wearing an insulin pump would serve as a pseudo-medical ID in case of an emergency, that isn't actually the case - an EMT will look for medical ID jewelry; they're not necessarily going to look for an insulin pump. (And what would that have told them, anyway? No name or medical condition specifics on that puppy!)

In the spirit of "I'm glad I started wearing medical IDs again", I'm looking to share the love. N-Style ID (whose founder has a daughter with T1D, and coincidentally the same company I bought that first "medical ID as an adult" bracelet from) contacted me, asking if they could send me one of their bracelets - but since my N-Style ID is working just fine I'd rather pass this gift onto one of you.

You can win one of the three designs I have pictured below ("Hoot", "Light Blue Rubber", or "Camo"):

There will be one winner, and your bracelet's ID plate will be engraved however you wish. Your bracelet will be shipped directly to you from N-Style ID.

Use the Rafflecopter widget below to enter this contest and make sure to leave a comment on this blog post answering the following questions: Do you normally wear medical ID jewelry? If so - what do you wear? If not - why not? Bonus entries may be earned by liking the N-Style ID Facebook page and following them on Twitter!

This contest will be be open for 48 hours; I will pick a winner Friday morning. This is not limited to U.S. residents - all are encouraged to enter.

GOOD LUCK!




a Rafflecopter giveaway

"Keep Going."

The minutiae of my diabetes life is looking pretty blurry lately - it's less "paying close attention" and more "auto-pilot".

I dipped my pinky toe into the CGM in the Cloud waters last week by downloading Chromadex, and thereby downloading (for the first time, at home) my Dexcom G4 CGM data onto my Macbook. It's hard to believe I'm doing well when those pie charts are predominantly lemon.

But, as a famous fish once said, I need to just keep swimming. It may not feel comfortable or look pretty or get me very far, but it's worth doing.

Or, another way: just keep going.








(You can find the photo set for these "Words of Hope" on the You Can Do This Project Facebook page.)

#MedX Global Access Program; Ignite Talk.

Chris was the reason I applied in 2012. I had never heard of Stanford's Medicine X conference before, nor had I known they were looking specifically for patients to attend their conference. "You should apply for this", he said - which baffled me. Me? Stanford? Medical conference? I wouldn't fit what they were looking for, surely. No, this was for someone else more official; more visible; more involved; more professional. Thank you, though.

The last possible date in the application period came and I realized that there was no harm in applying. I raced through the application. I was so certain that they would not pick me, but at least I could say I tried. No regrets.

But then, plot twist! I was selected for their ePatient program (and offered a scholarship that would cover the costs of my attendance, which was the only way I could attend, financially). My nerves on the flight there and throughout the first day were so intense that my whole body felt like one big vibrating lump because STANFORD and patients sitting in the front of the room and so many important people that I only knew through the internet and what am I doing here. I felt like an impostor. What am I doing here?

But then the conference began, and I increasingly began to understand.

image courtesy of Kerri

This conference that focused on "the intersection of medicine and emerging technologies" brought together every stakeholder in healthcare - but most especially, it brought together patients from a plethora of different conditions and communities. I felt so moved by the stories of my fellow patients; those ePatient Ignite talks were by far my favorite aspect of the conference.

And now, I get to return to Medicine X this fall (with limited scholarship help, this time) and deliver one of those talks myself. It may come to no surprise to you that the focus of my Ignite talk will center around the emotional impact of living with a chronic illness.

#MedX's Ignite! pt speakers: @chroniccurve @dudleyHUHS @JBBC @ProstheticMedic @Nisha_Pradhan @marvincalderon @JFreemanDaily @txtngmypancreas
— Stanford Medicine X (@StanfordMedX) July 7, 2014

You can check out the 2014 schedule here (and for those of you in the diabetes community, you'll be pleased to know that we are well represented on stage and in the ePatient program).

If you'd like to watch the conference but can't make the trip to Stanford's campus, you are in luck: you can virtually "attend" the conference by using the Global Access Program. It is free to use, but you have to register for it, so go do that.

Results: The Emotional Impact of Wearing an Insulin Pump.

A week ago, I asked those of you who wear one to tell me what you wish someone had told you about how insulin pumping affects you emotionally, and the responses were just as diverse, thorough, and sometimes surprising as I'd hoped they would be. Thank you, everyone!

Sifting through all of the responses, I noticed some common themes.

If you're thinking of trying an insulin pump, you might want to know that:

You may encounter misconceptions from others.

"I wish someone had warned me that I would [...] get frustrated with people assuming that I don't have to do anything anymore because the pump 'just does it.'" - Rachel

"I think it's a good idea to have a child practice answering 'What is that?' kinds of questions in a confident and concise manner. B. once overheard someone saying (about him) 'I HATE that kid. He thinks he's so great because they let him use an iPod during school.' One of B's friends told the hater it wasn't an iPod, but a medical thing. 'It's for his diabetes!' But since there's not always a nice friend around, some practice would be great!" - Katy

"While I don't think there has been a huge emotional impact on me directly related to wearing my pump, I would say that one thing I didn't consider was that I was making my invisible disease visible. I get a lot more questions about diabetes while wearing a pump than I do when I'm not wearing it or when it is not visible. I don't mind this though, as it is an opportunity to dispel myths and address people's curiosity." - Whiniest

"I always have people ask me what is that. Always seem to happen mid sentence of a conversation. "So we are going to shoot at this loca... what is that?" That can be very jarring and embarrassing if you don't want your diabetes to be announced. Preparing for that eventual discovery can be a good idea. That way your emotions are not shaken and you can have a witty comeback or little speech about what it is." - Jillian

Wearing an external medical device may take some getting used to.

"People should be prepared for the odd feelings - at first - of having something attached to their body ALL THE TIME, and that they will have to accommodate with clothing, etc. The benefits far outweigh this, and I pretty much forget it's there so it doesn't bother me any more, but it did take some getting used to!" - Anonymous

"I don't know about the emotional impact, but learning more about the practicality issues being attached to something 24/7 would have been helpful. (E.G - sleeping, how to wear dresses or clothes without pockets, intimacy, swimming, etc.)." - Jen

"The frustration of having to plan out your wardrobe for the week based off where your infusion set is. Also, being told how to spot a leak would be good." - Anonymous

"I'm not sure the emotional side of pump-wearing is different from any method of tight control. However, I do hate the weight & bulk, constantly shifting it according to an activity, and catching loose tubing on doorknobs, etc. OK, on second thought, there IS more stress. If it didn't provide more flexibility adjusting insulin to activity & better control in conjunction with CGM (also another stressor), I would return to the pen in a heartbeat." - Cat

"I've gone through pump hiatuses that are a direct result of just being burned out and frustrated with

the process of changing my infusion sites. The ordeal of having to switch sites, even when I don't want to, and sometimes hitting bad spots or wondering if it will hit a nerve or muscle (shudder)... I've taken breaks because it got to the point where I just couldn't do it anymore." - Mike H.

"I wish someone had warned me that I would be constantly concerned about my pump coming detached from me." - Rachel

You need to give it time.

"I would to tell someone considering a pump to know about the how difficult it can be to be patient and wait for the changes to kick in before saying I give up. It's not easy even though this little gizmo attached to us can make life easier sometimes it makes it harder." - Maria

"The pump is not magical. It won't cure all your problems and lower your a1c overnight. It takes work: basal and bolus rate adjusting, and is only as good as the time and effort you've put into programming it. (eek..is that mean?) I think we put such high expectations on a pump, and we get so excited that it'll make our lives all perfect. But it's still us trying to control numbers. Just with a little computer." - Holly

"Things that I would have liked to have known is that you don't have to deal with all of the advanced settings of the pump on Day 1, and some of them not ever, depending on how you choose to manage your life on insulin. I remember when I first went through orientation with the pump, I got really overwhelmed by the information overload and had to say, "Look, can we just set the basal rates and you show me how to do a single bolus and see insulin on board? And turn the alarm off? I'll figure out the rest later." And I did, in my own time, as I needed it. There are still features on my pump today that I don't use, and I've been pumping for... doing math on my fingers... 10 years? Holy cow. Anyway, it is good to know now that I can make the pump fit my diabetes style, and what works for me. And that's okay. Even if it doesn't necessarily take advantage of every feature on the device." - Martin

"Some stuff I had read made the transition seem like a breeze, and while I got to grips with the basics/general attachment thing pretty quickly, I reckon it was at least a full *year* before I really felt comfortable with my little android appendage and began to see what all the fuss was about in terms of improving BGs. Some of those first 12 months were not the easiest and I know I'm not the only one who has been tempted to lob my pump out of the window in the early days." - Mike K.

"I've only been pumping a little over 5 months after 3 yrs on MDI. I wasn't prepared for the lack of

sleep getting my night basals set and adjusting. Fast acting insulin as your basal acts differently than Lantus. It seems to take longer for high numbers to come down with all fast acting (YDMV) my first a1c was no different, [...] but I tend to be a little conservative with insulin because it is a little scary, I used to be afraid of it, now I say I have a healthy respect for it." - Debra

You might experience some "data overload".

"I think what was emotional for me was getting too obsessed about always checking numbers. When using a CGM with the pump, I found I was testing MORE because I wanted to be sure I could really trust it. I guess you eventually move past that." - Rachael

"After almost 20 years of injections I knew what that felt like, but early on with a pump I just had no idea whether this, that or the other thing 'felt right' or what to do about it if things were going a bit off kilter. How aggressively to correct... How long to leave it... When to wait and see... That would have been a lot more difficult if I'd not known it was coming as part of the package." - Mike K.

You might really dislike it - or, it might not bother you at all.

"It's okay to hate your pump some days because the pump clip is such a PIA." - Anonymous

"Less hugs from husband and kids , cause they're afraid of ripping out my site." - Anonymous

"I think it depends on your age. The transition was much easier for me because I was older (48). But... I think any kind of follow up with a new pumper (after a month, two months max), with answers tailored to that individual's circumstances, would be extremely helpful. Wish I had that." - Stephen

"Honestly, I was so excited to be off the 12-15 injections a day I was doing on MDI that my emotions upon getting the pump can be adequately described as 'OHEMGEE THIS IS AWESOOOOOMMMMMEEEEEEEEE!!' After coming off the pump for a few years due to losing my insurance and getting back on it after getting insurance again, my thoughts are still the same." - pavedsilverroads

"I resent when people tell me how I might feel, how I should feel, or how I should behave in response to a change in my life - especially when such things haven't happened yet! The stuff that goes through my head -- nobody knows it better than me, and nobody is qualified to predict how I might feel about a given circumstance. I don't think that emotional counseling, preparation, or whatever should be mandatory. Emotions are a sensitive issue, and if someone wants to discuss them or not discuss them, it should be their own choice, by their own initiation, and on their own terms." - Scott 

"[...] Getting a pump helped me become more open and comfortable with my diabetes." - Laddie

"It's okay to be frustrated with it. Just because it's new and shiny doesn't mean that you have to love it immediately. If you decide it's not for you after giving it a fair shot (and that changes from person to person and doc to doc), it's okay to go back to shots/pens/inhaling/whatever-delivery-method-you-prefer." - Maria

* * * * *

If you have any additional thoughts that weren't covered above - please leave them in the comments!

Wordless Wednesday: HBD, Rabbit.

So It Goes.

A reenactment:



Saturday morning, fasting:

CGM: HIGH

::mumbles profanities under breath; pulls out meter::

Meter: 528

::boluses::


Sunday morning, fasting:

CGM: 285

::grumbles; pulls out meter::

Meter: 265

::boluses::


Monday morning, fasting:

CGM: 312

::profanities again; pulls out meter::

Meter: 249

::boluses::


Tuesday morning, fasting:

CGM: 332

::dramatic groan; boluses off of CGM reading because this is now four mornings in a row; then pulls out meter::

Meter: 175

Dramatically looks at ceiling as she contains her rage

Review and Giveaway: aDorn Designs.

Update: this contest is now closed! Congratulations to the winner - Kristina!

Y'all know I love my diabetes accessories, and I will not admit de-tweet (groan, I know, sorry) even when a manufacturer discontinues a favorite. So where can one now look for a stylish, secure, coated-fabric case for their diabetes paraphernalia?

Oh, I know exactly where:

LeAnn from aDorn Designs just came out with a new diabetes bag called the "Elite Collection" clutch, and was kind enough to send me one for review earlier this summer. The condensed version is that while the interior could be improved slightly, this is a pretty solid bag that I plan to keep in my regular rotation. 

Huzzah:

• It has plenty of room for my Verio meter, vial of test strips, lancing device, Humalog pen and needles, and other random bits
• The outer material is ideal for meter bags: a coated cotton fabric that is unfazed by blood smears (seriously, love this fabric, can't say enough good things about it)
• Several interior zipper compartments of universal sizes, like so:

• Reasonable price point ($35)
• Exteriors that feel modern/stylish/incognito instead of medical/utilitarian/obvious

Could Be Huzzah Someday:

• While the clutch was rather lumpy-looking for the first day or so of having my stuff in it, the exterior eventually realized what was happening and chilled out - it's only super-lumptastic for the first day or so and then things stretch out (this is probably just a characteristic of the fabric and not a flaw in the making of the bag)
• Slightly bigger than what I'd personally want to use on a daily basis, but everyone has different tastes so this really should be more of a "heads up" than a not-so-good
• Let's make the interior fabric more stretchy, as to hug things a little better

If you'd like to claim one of these clutch bags for your very own, you are in luck! I am giving one away! You can pick from either of the designs shown above, and will need to respond to the eventual email I'll send you with a shipping address. Open to err'body, not just U.S. residents. You can earn up to two entries, using the Rafflecopter widget I have below: one entry for leaving a comment on this post that tells me why you want to win (and who you want to win for), and one entry for liking the aDorn Designs Facebook page.

a Rafflecopter giveaway

And if you'd like just to straight-up purchase one, LeAnn has kindly created a discount code for Texting My Pancreas readers that will deduct 15% off of your entire order: enter 15off at checkout. Go browse!

Disclosure: aDorn Designs sent me a free product for review, and to keep/use afterwards. I agreed to share whatever my thoughts would be here on TMP. I was not paid for this review and my opinions, thoughts, and photo text enhancements are, as always, solely my own.

The Emotions Of Insulin Pumping?

Update: you can find the results of this crowdsourcing post here.

Chris brought up an interesting point in his post earlier this week: when a person starts with their first insulin pump, there should be emotional training that happens along with the technical training you receive. In addition to learning how to set your basal rates and where the setting is for BEEP BOOP BEEP volumes, you should also get a heads up on how pumping insulin may impact how you feel, what other people might say to you, and things you wouldn't think about ahead of time but would be "good to know" as you head into the cyborg life.

You feel me?

If so, I'm asking for your input: if you have any experience involving using an insulin pump, what would you want someone considering one to know about the emotional side of using an insulin pump? Please leave your advice/anecdotes/sassy wisdom in the comments, and I'll compile them in another post. Thank you!

A "Fakebetes Challenge".

Do you know Michelle Litchman? She's a Utah-based nurse practitioner who is very active on social media and she does a lot of good work for people with diabetes. Among her many brilliant ideas lives the Fakebetes Challenge, where healthcare professionals pretend to "live with diabetes" for a week by taking saline injections, doing fingerpricks to check their bloodsugars, counting their carbohydrate intake, and corresponding via text message with a real-life diabetic.

A few weeks back, I was one of those real-life diabetics.

Michelle's rules of this challenge were as follows:

1. Kim will decide when the fakebetes challenge will start. Since no one gets to choose their diagnosis date, Whitney doesn't get a say in this.
2. The challenge will last 1 week.
3. Whitney will be expected to test her blood sugar before meals and at bedtime. There may be times when an additional blood test is needed in the event of hypoglycemia or hyperglycemia issues.
4. Whitney will be expected to take her saline injections as follows: 22 units of "long-acting" saline once daily, 1 unit for every 8 carbs plus a correction of 1 unit for every 30 points greater than 130 of "rapid-acting" saline. Adjusting insulin as needed for hypoglycemia, exercise, etc. Whitney is to notify Kim of what dose she took, how many carbs she ate, and if she is exercising.
5. Kim will be expected to feed Whitney blood sugars to work with. These may be real blood sugars she is actually experiencing, or made up. She may choose to decide to send Whitney different readings based on what Whitney is doing. Kim may also opt to send symptoms instead of glucose readings (ie. feeling shaky, sweaty, etc.) which should prompt Whitney to check her blood sugar.
6. Please connect so you can decide the best way to connect with each other. This may be by text, email, facebook IM, etc. Whatever works for you.

Whitney, who is a newly-minted RN, went through some of the mechanics of diabetes for one week - pricking her finger and checking her BG using a borrowed glucose meter; injecting herself with saline (in lieu of insulin); keeping a written log of everything she ate. We used my BG readings to determine her doses, while using her carb counts and exercise plans.

This week-long exercise gave me opportunities to bring up some of the quirks of my own life with diabetes - that even small amounts of exercise can cause significant drops in my BG; that I am extremely insulin-resistant while sleeping; that some foods contain what I refer to as "sneaky carbs".

I did my best to share some curve balls, and even I felt a little burnt out on diabetes management after a week of this constant communication. But there are some things that even a week of pretending to have diabetes can't really recreate, like:

• experiencing exactly 1.8 seconds of rage-filled panic after you pull your car into the parking garage at work because you think OH MY GOD I FORGOT MY INSULIN PUMP AT HOME but then realize OH MY GOD IT'S JUST IN MY OTHER POCKET 
• the hassle of remembering to keep all prescriptions filled on the first possible day so that you can build up a little bit of a cushion
• the gamble of not treating a BG of 74 when you know you're eating lunch in half an hour
• the agony of an "Er 5" while using one of your last test strips
• the labyrinth that is trying to figure out why you received a medical bill three years later
• wondering "what is true and what is foreign when everything is covered in the same gray dust"

I have great respect for any health care professional that voluntarily signs up for a challenge like this - even if it isn't a full (or, arguably, even a half) picture of what living with diabetes is really like, it's a glimpse that many of their peers do not have the chance (or desire) to experience. Whitney was so open to learning and asked great questions, and I hope she found our interactions worthwhile.

I would encourage future healthcare providers to take advantage of opportunities like this, and I hope that this type of make-believe helps to shape their future care with the empathy and understanding that their patients most certainly will need.

You can find Whitney's point of view on our Fakebetes Challenge today on Michelle Litchman's blog.

Pump In The Wild.

Hey hey, it's #dblogcheck day! Go leave a comment on every blog post you read in the diabetes community today - even if it's just a simple, "Check!". Read more about it on A Consequence of Hypoglycemia.

We were just killing some time; Aaron pushing the baby Rabbit in her stroller and me right beside, walking up and down the sidewalks of a local shopping area. I was too preoccupied with being uncomfortably hot and staring longingly at the window of the Fossil store (they used to make great cases to house diabetes gadgetry, but apparently no more), I suppose. But Aaron didn't miss a beat.

Real casual: "Hey, that guy has an insulin pump."

A dramatization

My eyes darted around a few seconds before they landed on a loop of clear plastic, happily bouncing in the breeze and moving briskly ahead of us. This gentleman had so many gadgets on his waistband (maybe he worked security somewhere?) that I didn't even see a pump, but that tubing couldn't be anything else.

I almost yelled, "SHOW ME YOUR PUMP", but then realized 1. he may have no idea what I'm referencing, and 2. I wouldn't (comfortably) be able to reciprocate as mine was clipped to my bra and okay maybe kind of an awkward way to introduce myself.

And so I said nothing.

There's really no moral to this story, except to point out that it seems my husband's pump sighting skills have now surpassed my own.

Things I Like.

• Miss Idaho and her prominently displayed insulin pump
• ViaCyte submitting their cell encapsulation device to FDA - which means if approved they'll proceed to human clinical trials (get moderately excited - still a long ways from being ready for market though)
• What Stuart Scott (and then Chris) had to say about his ongoing battle with cancer
• Watching so many CGMs be released into the cloud
• These dance instructions
• This song, all day, forever
• Brilliant people doing brilliant things
• New ways to accessorize medical devices
• This post from a diabetes patient about being the "them"
• People who have a good point, actually
• My daughter knowing how laptops are supposed to work, from watching Mom and Dad:

Happy weekend!

#MasterLab Debrief.

Many other people have already done a fantastic job of recounting what happened at the Diabetes Advocates "MasterLab" event a couple of weeks ago (video of the event is coming soon, I'm told): find a well-curated Storify of MasterLab tweets courtesy of diaTribe here and a thorough write-up at Diabetes Daily. I also dig this call to action from Christel.

And because everything was so well-documented by others who took more notes than me (which was actually everyone because I took zero notes and opted instead to just experience, engage with, and process it with the aid of a few tweets), I'm not going to try to do that. Instead, I'd like to tell you some of what I took away from the event.

(I want to emphasize, first, that I realize there are about 10,000 different things that need our attention when it comes to improving outcomes for people living with diabetes - but if we all pick one and work on that thing, we're moving the needle. And if more/all of us can also pick "speaking up to Congress", our united actions can have an impact on EVERYONE.)

#1: Our community needs unity and focus, now more than ever.

We, as a diabetes community, are a "sleeping giant" in advocacy. - Paul Madden #MasterLab
— Kim / Diabetes (@txtngmypancreas) July 2, 2014

We must stop judging ppl w/other types of #diabetes if we want the world 2stop judging everyone w/diabetes. #weareinthistogether #MasterLab
— Kelly / Diabetes (@diabetesalish) July 2, 2014

#2: If you're not angry, you're not paying attention.

Bummer of a slide, but this is why we need to mobilize. #MasterLab pic.twitter.com/EUxsdr75E8
— Kim / Diabetes (@txtngmypancreas) July 2, 2014

Let that anger move you to action, but let's take care to not unleash that anger on the very people whose help we need to affect change.

We need ALL people with diabetes as stakeholders AND the payers, insurance, pharma, govt, EVERYONE involved in the fight #masterlab
— Sara (@saraknic) July 2, 2014

#3: We need to get smart(er).

I've been spending more time wandering around the FDA's device regulation website lately, trying to educate myself more on how device regulation works, what things like 510k's are, and why some approvals take so much longer than others. I highly encourage you to do the same. If we want our concerns to be taken seriously by others, we need to know what we're talking about.

#4: Money speaks most loudly. Remember that as you frame your asks.

As we #advocate we have to keep in mind: "Ppl vote with their wallets if they don't have a loved one with #diabetes" #masterlab #cwdffl2014
— Heather Gabel (@HeatherGabel) July 2, 2014

To Congress: currently 60% of those on Medicare who have diabetes visit hospital > once/yr. End game: let's reduce that spending. #MasterLab
— Kim / Diabetes (@txtngmypancreas) July 2, 2014

Not covering an insulin pump for someone who needs it does not save money if they end up w/ hospital visits; complications. #MasterLab
— Kim / Diabetes (@txtngmypancreas) July 2, 2014

We need to emphasize where real costs are. Cheap, inaccurate meters don't save taxpayers $. Keeping ppl healthy; productive does. #MasterLab
— Kim / Diabetes (@txtngmypancreas) July 2, 2014

#5: We can learn a lot from advocates and activists in other health communities, especially HIV/AIDS.

Read the Back to Basics document; a roadmap for how activists changed the advocacy landscape in HIV/AIDS. Yes, it is 32 pages, and yes it is absolutely worth your time to read it.

YOU GUYS: If they could enact that kind of change with 30,000 patients, imagine what we could be doing with our 30 million.

#6: There has been no more perfect time to mobilize and act.

"5 people don't change the system, 500,000 do. You need masses and masses of people." @ManganielloHCM #CWDFFL14 #MasterLab #DOC #HCM
— Lauren Stanford (@Lauren_Stanford) July 2, 2014

@diabeteshf rocks. #diabetes parents are all potential. Time to unite to change the world. My honor to be present with these folks.
— Michael Manganiello (@ManganielloHCM) July 2, 2014

Get over to the Diabetes Action Hub, and let's get to work. Encourage your members of Congress to cosponsor the National Diabetes Clinical Care Commission Act if they haven't already - and THANK THEM if they have. (You can track the bill's progress through this site.) Send an email. Make a phone call. Compose a tweet.

I'm fired up; I'm ready; let's do this. Together.

Disclosure: Diabetes Hands Foundation, through the Diabetes Advocates program, covered the costs of my travel, conference registration, and lodging while at MasterLab and the Friends For Life conference through a scholarship I was awarded.

Suddenly, Bloggers.

The diabetes community is to hotel bars as Corgis are to the internet?

It may be a while before my brain unscrambles enough to write about FFL, so you'll have to put up with me posting the three photos I took at the conference in the meantime.

Jerry The Bear's Indiegogo Campaign.

Our friends at Jerry the Bear are launching an ambitious campaign today: to get a Jerry the Bear into the hands of every newly diagnosed child with T1D.

Go read about their Indiegogo campaign, and check out these video:







I love Jerry the Bear and I hope you'll considering helping them get a Jerry to every child living with type 1 diabetes.

If you have a child with type 1 diabetes, be among the first to get a bear by doing these things:

1. Create an Indiegogo account.
2. Use the share buttons below the video to share your referral link with your social network
3. If 10 people contribute to the campaign using your referral link, you will be among the first to receive Jerry the Bear.

Unpacking.

"I will help you, Mom. Let's unpack the rattles glucose tabs first."

The Friends For Life conference was great, but I really really really missed my kid.

Video Reboot.

Just a quick note to say that the You Can Do This Project has a new introduction video:





We hope you'll continue to share your story, and encourage others to do the same.

"How Are You Managing Your Diabetes"?

Are you asking what devices I use? A glucose meter, an insulin pump, and a continuous glucose monitor (CGM), mostly. Sometimes my phone joins the party. I know that the tools I use are not indicative of how "bad" my diabetes is, but I recognize that you may not know this.

Are you asking about medications? My insulin pump uses short-acting insulin (Humalog), if that's what you're wondering. I know that insulin is a scary medication to have to use, and I've had to reach a place of acceptance. I don't expect you to realize that on your own.

Or maybe you want to know my A1C, to give some indication of how "controlled" I am. That's what the measurement exists for, right? To be able to judge? I clocked in at 7.0 last week. Does that tell you everything that you want to know? I know that it won't, but I acknowledge that this is the easiest way for you to find an answer to what you think your question is.

It could be that you're wondering how many severe glycemic excursions I experience; how many times my postprandial readings fall outside of a specified range. Maybe you wonder what my fasting numbers look like. They may tell you something, but with the absence of context I know you won't be allowed to see the full picture.

Do I count every carbohydrate accurately? Do I bolus with precision and punctuality? Do I make smart food choices? Not all the time, no. But I strive to be kind to myself and realize that there is no "perfect" when it comes to diabetes.

Perhaps your curiosity lies in my abilities - do I feel up to the task? Do I wake up each morning motivated to do all of the things I must do to care for myself? Do I actually live when I live with chronic illness? Those are valid questions.

It is said that living with diabetes is a test of patience. This is true for more than one reason; while the disease itself tests me daily, the conversations and questions it inspires in my daily life allow me the privilege of practice: to not bristle at a sharp comment; to swallow the instinct to be defensive; to remind myself that someone's questions about my diabetes are always, always shaped by the experiences that person has had in their life and any misdirected hate has actually nothing to do with me; to practice kindness with both myself and with others. Each question is a chance to remind myself of our shared humanity and curiosity and to respect and (when warranted) educate those around me.

Part of what is so challenging about advocacy is the vulnerability required of those sharing their stories. Part of the reward, though, is that the process allows us to practice and become better human beings.

Too deep? I don't think so. We're getting better, and we're doing it together.

MasterLab / #CWDFFL14.

Next week is going to be one big blur of diabetes advocacy and emotions (and being without my kid for a whole week) (cue more emotions) so please leave a message kthanks BEEP.

By way of a scholarship* (immense gratitude as I wouldn't be able to attend either of these events without a scholarship's help), I'll be at the Diabetes Advocates MasterLab event and then the Children With Diabetes Friends For Life conference in Orlando, FL. And then because I really love a three-pronged challenge we will also be exhibiting the You Can Do This Project during FFL's exhibit hall hours.

MasterLab is on Wednesday. The exhibit hall also opens on Wednesday. Stress; I haz it.

Luckily I have some great friends and advisory team members who are more than willing to make this all work out. (Are we sure that beaker in the MasterLab logo isn't actually some sort of cocktail, because a few of us may be looking for one after trying to balance all of this.)

I'm really looking forward to the MasterLab as a way to figure how to move some things forward, and also because I'll get to meet so many of my favorite fellow advocates in-person, finally. There's a special magic that happens when we get a bunch of us into the same physical space.

In relation to exhibiting You Can Do This Project, I want to say a BIG THANK YOU (imagine me waving my arms around in an exaggerated fashion while saying that) to two organizations that helped me pay for the stuff we'll be giving away at the booth:

Like so

Thank you to Asante Solutions, makers of the Snap insulin pump, for paying for 1,500 You Can Do This Project bracelets to be given out to FFL attendees. You may recall that I did a four-week trial of their insulin pump last December. They'll be at this conference and offering free trials with their insulin pump there, too.

Thanks also go to Akibah Health for covering the costs of printing flyers and magnets (we're going to have magnets!!!) to hand out. They are developing a smartphone case all-in-one glucose meter, and will also be at FFL.

These are incredibly generous gestures, considering YCDTP is not a registered non-profit (we're a grassroots thing that dreams of being an official non-profit some day) and the only way you'd know they covered the bill for these is that I'm telling you right now. No co-branded anything. No signs of recognition at the booth. Just this blog mention/disclosure and my eternal gratitude to them for stepping up in a "we'll help where you need it and then just kind of back away and let you guys do your thing" kind of way.

Hell yeah.

It's also worth mentioning that CWD very generously "upgraded" us to a booth space (instead of the table location we started out with), so we'll be sprawling out in our 10x10 area, maxin' and relaxin' and actin' all cool. Thank you thank you thank you, Jeff and Laura.

It will be a crazy week that I'm crazy thankful to be having. Let the packing procrastination commence!

*The scholarship from DA covers the cost of my flights to and from the conference, the shuttle between the airport and hotel, conference registration, and the hotel room that Sar-Bear and I will be sharing (scholarship recipients were required to room together, as part of the whole deal - I'm used to that, anyway!). FFL just wouldn't be the same if Sara and I weren't sharing a room!

A Bad Habit.

When my endocrinologist downloads the data from my Dexcom receiver later today during my appointment, she's bound to notice quite a few gaps - like the one last night, where there will be no data from around 11:30 pm until I woke up this morning at 5:45 am.

You see, about a half hour before that I had clocked in at 80 mg/dL. I had no insulin on board and no food in my stomach, as dinner was hours before that. I hadn't gotten much exercise that day or the day before, so I felt reasonably comfortable taking the gamble of doing nothing about a reading that teetered right on the cusp of being "low".

The gamble of being 80 mg/dL at bedtime and not treating or temp basal ing or anything. #fingerscrossed #lowBGiscontextual
— Kim / Diabetes (@txtngmypancreas) June 17, 2014

Literally the only things I did in the next few minutes were brush my teeth, plug in my phone, and lay down. I tossed and turned though, and couldn't find a comfy position. And when I finally did?

BZZZ! BZZZ! BZZZ!

Where the hell did that 67 come from? And then the 55? Mild sleepiness transitions to anger: Ugh, GOD, I'm fine, stop freaking out.

Again: BZZZ BZZZ BZZZ BZZZ!

That's it; I'm done. You're done. 

Some might say, "TURN DOWN FOR WHAT". Lately, I too often say, "SHUTDOWN FOR SLEEP".




#AllTheSocialMediaChannels

It worked out in this instance, but there's never any guarantee - when I turn off my CGM receiver, I'm opting out of a safety net. In theory this shouldn't bother me, as I should be able to use technology in the ways it works for me (and opt out of it when it doesn't), but that all too often comes with a side order of guilt. When I'm forced to decide, "what's more important - sleep or safety?", all too often the need to sleep has been winning.

Joslin Diabetes, Dexcom, and "The Institute".

I just got this email (bold emphasis is mine):

BOSTON (June 10, 2014) – Joslin Diabetes Center today announced the introduction of the Joslin Institute for Technology Translation (the “Institute” or JITT), a new division of Joslin Diabetes Center that formalizes the delivery of Joslin’s clinical solutions to medical device and technology companies. In addition, it was announced that Dexcom, Inc., a San Diego-based maker of continuous glucose monitoring systems for patients and blood glucose monitoring systems for healthcare providers in hospital settings, has joined to become the first Founding Member of the JITT and is a member of the Institute’s Advisory Board. 

“Our goal in establishing the Joslin Institute for Technology Translation is to further the use and development of technology and medical devices to improve diabetes care, improve the lives of those living with diabetes and reduce health care costs,” said John L. Brooks III, President and CEO of Joslin Diabetes Center. “With Joslin’s expertise as the world's largest diabetes research and clinical care organization, the Institute is uniquely positioned to impact digital health by offering meaningful solutions to strengthen technology, and we are extremely pleased to have an organization of Dexcom’s caliber join us in this quest.” 

The mission of the Joslin Institute for Technology Translation will focus on four key areas: 

· Create and offer physician-designed, and patient-tested, decision support tools for improved solutions in glucose and insulin management;
· Be a powerful voice in moving digital health to improve diabetes care in a cost-effective approach – collaborating with numerous medical device and technology organizations;
· Create individualized, confidential collaborations with industry partners providing new solutions that advances the monitoring and treatment of diabetes via new technologies; and
· Pioneer innovative education and training programs that optimize decision-making processes and the adoption of best-in-class technologies for healthcare professionals and patients world-wide.

Mountains of jargon aside, this sounds like something to get excited about. Full press release found here.

Five Years.

Five years ago today, my insulin pump died and a photographer didn't show up. Oh, and I got to marry my best friend.

It was a full day.

It also taught me that one should never stuff an insulin pump under a pair of Spanx in 80+ degree heat while wearing a heavy satin gown. LEARN FROM MY MISTAKES, YOU GUYS.