Wednesday, July 23, 2014

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.


Tuesday, July 22, 2014

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.






Friday, July 18, 2014

Things I Like.





Happy weekend!


Monday, July 14, 2014

#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.



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



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.



#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.






#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.




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.



Wednesday, July 9, 2014

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.

Tuesday, July 8, 2014

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.

Monday, July 7, 2014

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.
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Monday, June 30, 2014

Video Reboot.

Related Posts Plugin for WordPress, Blogger...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.

Wednesday, June 25, 2014

"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.



Monday, June 23, 2014

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!