Monday, December 15, 2014

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


Monday, October 6, 2014

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.



Friday, September 12, 2014

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.

Thursday, September 11, 2014

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.)

Wednesday, September 10, 2014

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.

Sunday, August 31, 2014

What Diabetes Awareness Month Feels Like to a PWD.

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












Wednesday, August 27, 2014

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.



Tuesday, August 26, 2014

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

Tuesday, August 19, 2014

"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.


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

Tuesday, August 5, 2014

#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.


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.