#wearenotwaiting

[diabetogenic]

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‘Why would you bet against the type 1 community?’ That was a question asked in a session at the ISPAD conference a couple years ago. It wasn’t someone with T1D drawing attention to the community. Instead, it was said by someone working in global health who had seen the remarkable efforts such as the #WeAreNotWaiting movement and grassroots, peer-led education initiatives in low-income…

[thediabeticsurvivor]

📟🚀 Say hi to the looper @1derfultype 💙😊 Great to see the new stickers for RileyLink made it to Paris 🇫🇷 #insulin #insulinpump #diabetestype1 #diabetestyp1 #rileylink #wearenotwaiting #loop #bolus #beyondtype1 #dexcom #diabeetus #jdrf #diabetestechnology #diabetestech #diabetesempowered #diabadass #diabetesstickers #omnipodder #omnipoddash #omnipodloop #omnipodart #omnipodsquad #omnipodinsulinpump #omnipod #loopdiabetes https://www.instagram.com/p/B3wdJzhBQBa/?igshid=vxl50ykh2dtw

[wee5macs]

Well, today is #worlddiabetesday2019 💙 This is Owen’s feeling about #diabetes today! 💙 Hey, at least his shirt is blue! Big time mama fail, we had no diabetes awareness shirts that fit 😳Samantha has a hand me down, though! C’mon, everyone! Show me your blue!💙💙💙💙 #ndam2019 #bantingsbirthday #weneedacure #wearenotwaiting #owenpatrick #mylittlediabadass #duckfiabetes #sleepdeprivedmama #nothanks #atleasthespolite #todaywewearblue #lovehim💙 #thisist1d #dlife (at Mount Zion, Illinois) https://www.instagram.com/p/B42Koy0Jmm_/?igshid=1rux6qyr4ciri

[mostlysignssomeportents]

Monopolists want to create human inkjet printers

Even if you don’t have diabetes, you can’t have missed that there’s something really terrible going on with how Americans with diabetes control their illness. Insulin — a century-old drug whose inventors refused any patents — has experienced double-digit, year-on-year price hikes (1123% between 2009–2017 alone!):

https://www.nbcnews.com/business/consumer/desperate-families-driven-black-market-insulin-n730026

Moreover, this is a uniquely American circumstance. In Canada, insulin remains affordable, which is why Americans — especially parents of kids with diabetes — form caravans and cross the northern border to buy insulin from Canadian pharmacies:

https://www.cbc.ca/news/canada/nova-scotia/americans-diabetes-cross-canada-border-insulin-1.5125988

It’s why Americans are starting to brew their own insulin:

https://openinsulin.org/

And it’s why California is getting into the insulin-manufacturing business:

https://khn.org/news/article/california-wants-to-slash-insulin-prices-by-becoming-a-drugmaker-can-it-succeed/

Why do Americans with diabetes go into debt to buy insulin? Why do they ration their insulin, risking comas or even death? In part, it’s the US government’s unwillingness to limit pharma price-gouging. But that can’t be disentangled from the monopolization of the insulin market, an orgy of mergers that allowed a small number of companies to corner the insulin market:

https://prospect.org/health/insulin-racket/

Medical technology is a favorite target of private equity rackets, who understand that when you can threaten your customers’ very lives, they’ll pay — and pay — and pay. That’s why one private equity ghoul celebrated the “golden age of older rectums” before embarking on a spree of colonoscopy monopolization:

https://armandalegshow.com/episode/golden-age-of-older-rectums/

More than one in ten Americans have diabetes. 96 million American adults are pre-diabetic. Diabetes disproportionately strikes racialized Americans, who have less political capital and can be abused with impunity. No wonder that the entire diabetes supply-chain has been targeted by medical profiteers.

https://www.diabetes.org/about-us/statistics/about-diabetes

Take dialysis: private equity firms have bought and merged nearly all the standalone dialysis clinics and transformed them into charnel houses, where production quotas and cost-cutting produces rampant infections among the undersupervised patients who rely on them. Meanwhile, prices have skyrocketed, and those profits have been mobilized to fight any attempt at regulation:

https://prospect.org/health/dialysis-duopoly-spends-big-protect-profits-california/

The monopolization of diabetes goes beyond dialysis and insulin — it also extends into blood sugar monitoring and insulin delivery — the self-monitored, self-administered part of the disease that diabetes patients have taken into their own hands.

In 2013, Dana Lewis worked with John Costik to refine the code he’d written to access the data from his son’s continuous glucose monitor (CGM); they teamed up with Ben West, who was reverse-engineering insulin pumps, and created a “closed loop” system that could automate insulin delivery.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6610599/

They called this OpenAPS, and called themselves loopers. Organizing under the hashtag #WeAreNotWaiting, loopers collaborated to refine these systems into a kind of artificial pancreas, one that took CGM readings, analyzed them with statistical tools to create individual insulin response profiles, and release appropriate insulin doses.

https://openaps.org/

The movement included a lot of techie people who either had diabetes or parented a young child with diabetes — my friend Sulka Haro, an accomplished technologist, was the first looper I knew, who was using OpenAPS to help his young child maintain safe insulin levels while at day-care.

But looping went beyond the tech world; diabetes is extremely common, and lots of people struggle to get their doses right (not least because it can be hard to think clearly when your insulin levels are out of whack). The looper community grew and grew — over the objections of the med-tech industry, who went to war against them.

These companies had a very weird anti-looping message. They claimed that loopers’ exploitation of the defects in their pumps and monitors was, itself, a security risk. Med-tech monopolists like Abbott abused copyright law to force Github to nuke the code that made looping possible:

https://www.diabettech.com/wearenotwaiting/patching-librelink-for-libre2-clearing-the-fud/

Now, it’s clear that med-tech companies have a security problem. Medtronic’s insulin pumps were insecure enough that security researchers demonstrated a proof-of-concept “universal remote for killing people” that exploited its defects:

https://pluralistic.net/2020/08/03/turnkey-authoritarianism/#minimed

But med-tech companies don’t just have a security problem — they have a problem with their security problem. Medtronic ignored bug reports until the “universal remote” was presented. Johnson and Johnson downplayed a potentially lethal software bug in their devices:

https://www.reuters.com/article/us-johnson-johnson-cyber-insulin-pumps-e-idUSKCN12411L

To the extent that med-tech companies are interested in addressing these amateurish (but incredibly dangerous) security defects in their products, their efforts are aimed almost entirely at shutting down loopers’ homebrew technology. Older tech is now prized for its usefulness to loopers:

https://www.theatlantic.com/science/archive/2019/04/looping-created-insulin-pump-underground-market/588091/

Why would med-tech companies be more worried about loopers than they are about people who hijack insulin pumps to harm or even kill people with diabetes? Because open looping systems are a threat to their monopoly plans — plans to create “vertically integrated ecosystems” that lock people with diabetes into buying proprietary insulin for proprietary pumps that connect to proprietary CGMs.

In other words, the market plan is to create an artificial pancreas that works like one of HPs awful inkjet printers — a device that is more concerned with extracting money from your bank account than it is with depositing ink on a page (or insulin in a vein):

https://twitter.com/dustin_driver/status/1534333475062329344

As with other parts of the diabetes supply chain, pumps, CGMs and the algorithms that turn them into a loop are all being sucked into a vortex of corporate mergers, as private equity companies seek to corner the market on your pancreas.

In an open letter to FDA officials, Joanne Milo, raises an alarm about one such merger: CGM giant Dexcom’s bid to buy out pump manufacturer Insulet.

https://thesavvydiabetic.com/open-letter-to-the-us-fda-from-the-savvy-diabetic-re-fda-interoperability-mandate-and-end-user-on-device-continuous-access-to-our-own-data/

As Milo writes, Dexcom CGMs are currently interoperable with a variety of pumps, including Tandem’s. Dexcom has a history of fighting attempts by people with diabetes to access their own data, and the company’s acquisition of a leading insulin pump company will only strengthen their efforts to lock CGM users out of their own devices.

That would be history repeating itself. The 2020 acquisition of Companion by Medtronic triggered an immediate lockdown of Companion’s InPen insulin delivery systems so they’d no longer with with Dexcom’s CGMs. If Dexcom’s acquisition is waved through, the US market will be controlled by three pump/CGM conglomerates. That will be a death-knell for all the pump companies that don’t have a CGM division.

More importantly than these firms’ commercial fortunes is the effect on people with diabetes. The ability of diabetes patients to mix-and-match a pump, a CGM, and an algorithm to moderate their interactions will go up in smoke. If your personal biology isn’t suited to the choices of three giant companies, you’re out of luck.

Milo points out that the baby formula shortage was caused by the monopolization of another key health market. What happens if the market for diabetes tech is gathered into three companies’ hands and they seek “efficiencies” by concentrating production into a few factories and consolidating their supply chains so they depend on just a few offshore suppliers?

That would also be history repeating. Private equity rollups concentrated nearly all production of medical saline drips into one company’s hands. That company closed all its factories save one, in Puerto Rico, where local authorities gifted them with favorable tax treatment. It was great for profits and shareholders, but terrible for America — Hurricane Maria created a months-long, deadly shortage in saline — that is, salty water in a plastic bag.

https://www.hsph.harvard.edu/news/hsph-in-the-news/hurricane-maria-u-s-iv-bag-shortage/

Milo calls on the FDA to “stop treating people with diabetes as ‘black hat’ hackers, forced to reverse-engineer access to their own CGM data.” She points to peer-reviewed studies on the safety and efficacy of community-based development of multi-vendor looping systems:

https://www.thelancet.com/journals/landia/article/PIIS2213-8587(21)00267-9/fulltext)

Though Milo addresses her remarks to the FDA, this is also an issue that Jonathan Kanter at the DoJ, Lina Khan at the FTC, and Tim Wu at the White House should have on their radars. The diabetes crisis is only partially medical — at this point, it primarily economic, a crisis of corporate profit-seeking over human lives.

Image: Cryteria (modified) https://commons.wikimedia.org/wiki/File:HAL9000.svg

CC BY 3.0: https://creativecommons.org/licenses/by/3.0/deed.en

Björn Heller (modfied) https://de.wikipedia.org/wiki/Datei:Wearing_pump.JPG

CC BY 2.0 (German) https://creativecommons.org/licenses/by-sa/2.0/de

[Image ID: A package of HP inkjet ink; it has been modified to incorporate the word- and logo-marks of Insulet and Dexcom. The image on the front of the box has been replaced with a man's bare stomach; the man is wearing an insulin pump. The sides of the box have been overlaid with a Matrix 'code waterfall' effect. The menacing red eye of HAL9000 from 2001: A Space Odyssey glares out of the box.]

[ultraevonne]

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A post shared by Evonne Gallardo (@muse1971)

#saturday We are in time. Don’t tell us 2 wait any longer. Use another excuse, use the truth, but don’t tell us 2 wait any longer. Big #saturdaymood #saturdayvibes #jamesbaldwin #change #stopwhitesupremacy #ancestralhealing #wearenotwaiting #repost @agirlhasnopresident I’ve been sent this video no less than 20 times in the last 48 hours. I watched it once and then I had to sit with it for a bit. I think it’s absolutely fair to be tired of waiting. James Baldwin died in 1987 so he didn’t even live to see us vote in a black president. It makes me ask the question, how long do you wait for things to change before you decide to take a by any means necessary approach? I think it’s a fair question. 🤷🏻‍♀️ #JamesBaldwin #HowMuchTime “How much time do you want, for your ‘progress’?” James Baldwin (at Los Angeles, California) https://www.instagram.com/p/B_-SthqA_Ys/?igshid=1h9ie90pbzm6k

[med20]

Dana Lewis has been a vocal proponent of the empowered patient movement and has assiduously chronicled her efforts in managing her Type 1 diabetes including building a better alarm for her continuous glucose monitor when traditional medtech manufacturers gave her unsatisfying answers.

On Friday, at the annual Stanford Medicine X conference at Stanford University in California that kicked off Friday and continues through the weekend, Lewis announced a new role for herself: the patient as principal investigator.

The study/project funded by Robert Wood Johnson Foundation is called”Learning to not wait: Opening pathways for discovery, research, and innovation in health and healthcare.” For the next 18 months, the project aims at studying data and innovation coming out of the diabetes community with a goal to eventually identify its needs and then create a resource framework that can help to scale such a community patient effort.

“This is significant because as patient I am the principal investigator of the project … and that project starts today,” Lewis declared to loud cheers and applause from the audience. ”

The genesis of the project occurred when Lewis was approached by Eric Hekler from Arizona State University at another conference who posed the tantalizing question to her: As a community, the diabetes patient group has achieved a lot — even a do-it-yourself-artificial-pancreas — but what more could be achieved if the community collaborated with researchers?

To that end, the project will have an on-call data science team that can answer thorny questions that may bubble up from the diabetes patient community who are DIY researchers in their own right. In a blog post, announcing the project Lewis points to some of these questions:

How does sensitivity change during growth spurts, during periods of inactivity, or when changing insulin types?

What are some of the most successful mealtime insulin dosing strategies? Etc.

The project will also allow patients to submit a research question and have that research be done.

[thediabeticsurvivor]

👋😊Say hi to Aaron ( @glucosenough ) with his #pancreascopilot building his @myomnipod DIY loop - #wearenotwaiting 🤘~ Thanks for rocking the PANCREAS Co-Pilot T-shirt ~ #dexcom #insulin #insulinpump #diabetestype1 #diabetestyp1 #rileylink #loop #bolus #beyondtype1 #dexcom #diabeetus #jdrf #diabetes https://www.instagram.com/p/B4Pd_WTBB-F/?igshid=16zbvxe17srb0

[wee5macs]

Happy 6th diaversary to my total diabadass! We love you, Owen Patrick! #hechosedinner #5guys #heatethewholething #t1dlookslikeme #t1dlife #hungryboy #myheart #diabadass #beyondtype1 #diaversary #sixyears #weneedacure #wearenotwaiting (at Five Guys) https://www.instagram.com/p/Bwnedw7lqbK/?utm_source=ig_tumblr_share&igshid=1uiafli46nj3n

[just4programmers]

Lighting up my DasKeyboard with Blood Sugar changes using my body's REST API

I've long blogged about the intersection of diabetes and technology. From the sad state of diabetes tech in 2012 to its recent promising resurgence, it's clear that we are not waiting.

If you're a Type 1 Diabetic using a CGM - a continuous glucose meter - you'll want to set up Nightscout so you can have a REST API for your sugar. The CGM checks my blood sugar every 5 minutes, it hops via BLE over to my phone and then to the cloud. You'll want your sugars stored in cloud storage that YOU control. CGM vendors have their own cloud, but we can easily bridge over to a MongoDB database.

I run Nightscout in Azure and my body has a REST API. I can do an HTTP GET like this:

/api/v1/entries.json?count=3

and get this

[ { _id: "5c6066d477b2a69a0a7810e5", sgv: 143, date: 1549821626000, dateString: "2019-02-10T18:00:26.000Z", trend: 4, direction: "Flat", device: "share2", type: "sgv" }, { _id: "5c6065a877b2a69a0a7801ce", sgv: 134, date: 1549821326000, dateString: "2019-02-10T17:55:26.000Z", trend: 4, direction: "Flat", device: "share2", type: "sgv" }, { _id: "5c60647b77b2a69a0a77f381", sgv: 130, date: 1549821026000, dateString: "2019-02-10T17:50:26.000Z", trend: 4, direction: "Flat", device: "share2", type: "sgv" } ]

I can change the URL from a .json to a .txt and get this

2019-02-10T18:00:26.000Z 1549821626000 143 Flat 2019-02-10T17:55:26.000Z 1549821326000 134 Flat 2019-02-10T17:50:26.000Z 1549821026000 130 Flat

The "flat" value at the end is part of an enum that can give me a generalized trend value. Diabetics need to manage our sugars at the least hour by house and sometimes minute by minute. As such it's super important that we have "glanceable displays." That means anything at all that gives me a sense (a sixth sense, if you will) of how I'm doing.

That might be:

Alexa, what's my blood sugar?

Adding sugar numbers and trends to your Git/PATH prompt in your shell

An Arduino with an LCD

A wall-mounted dakBoard Family Calendar in a shared space that also shows my blood sugar

I got a Das Keyboard 5Q recently - I first blogged about Das Keyboard in 2006! and noted that it's got it's own local REST API. I'm working on using their Das Keyboard Q software's Applet API to light up just the top row of keys in response to my blood sugar changing. It'll use their Node packages and JavaScript and run in the context of their software.

However, since the keyboard has a localhost REST API and so does my blood sugar, I busted out this silly little shell script. Add a cron job and my keyboard can turn from orange (low), to green, yellow, red (high) as my sugar changes. That provides a nice ambient notifier of how my sugars are doing. Someone on Twitter said "who looks at their keyboard?" I mean, OK, that's just silly. If my entire keyboard turns run I will notice it. Again, ambient. I could certainly add an alert and make a klaxon go off if you'd like.

This local keyboard API is meant to send a signal to a single zone or key, so it's hacky of me (and them, really) to make 100+ REST calls to color the whole keyboard. But, it's a localhost call and it's not that spendy. This will go away when I move to their new API. Here's a video of it working.

Got my keyboard keys changing color *when my blood sugar goes up!* @daskeyboard @NightscoutProj #WeAreNotWaiting #diabetes pic.twitter.com/DSBDcrO7RE

— Scott Hanselman (@shanselman) February 8, 2019

What are some other good ideas for ambient sugar alerts? An LCD strip around the monitor (bias lighting)? A Phillips Hue smart light?

Consider also that you could use the glanceable display idea for pulse, anxiety, blood pressure - anything in your body you could hook up to in real- or near-realtime.

Sponsor: Get the latest JetBrains Rider with Code Vision, Rename Project refactoring, and the Assembly Explorer. Improved support for C#, VB.NET, F#, TypeScript, and Angular is all included.

© 2018 Scott Hanselman. All rights reserved.

[hcsmca]

HCSM Resource

Patient-Driven Diabetes Technologies: Sentiment and Personas of the #WeAreNotWaiting and #OpenAPS Movements https://t.co/rfgANKjMAW #hcsmR pic.twitter.com/EqDh1wJb6C

— Symplur (@symplur) July 24, 2020

[diabetogenic]

#HackingHealth at #EASD2019

One of the many highlights for me at last week’s EASD meeting was the satellite event about DIYAPS. It was a Hacking Health event, co-organised by the OPEN Project consortium and promised to highlight the perspective of the #WeAreNotWaiting movement through the eyes of people with diabetes, researchers and clinicians.

It was standing room only, with the event having sold out a few days earlier.…

[thediabeticsurvivor]

Riley Link stickers 💪 💪 Thank you @1derfultype 🇫🇷💙😊 for this great diabetes tech pic. Ps: For those who don't know, the #RileyLink is a little device that helps your mobile and pump speak to each other. Creating a closed-loop 📟🚀⁠ ⁠ #insulin #insulinpump #diabetestype1 #diabetestyp1 #wearenotwaiting #loop #bolus #beyondtype1 #jdrf #dexcom #diabetestechnology #diabetestech #diabetesempowered #diabadass #diabetesstickers #jdrf #beyondtype1 #diabetesuk #diabetesempowered #diabeticdiabadass #insulinpump #medtronic #diabetescommunity #diabetestech #diabetesapp #diabetesmanagment — view on Instagram https://ift.tt/3gZIaJq

[maxihealth]

Worrying About Possible Recession Compels Health Consumers to Seek Less Care

Four in ten U.S. patients said the state of the economy changes how often they seek health care, according to a new study from TransUnion, the credit agency that operates in the health care finance space.

Nearly two-thirds of patients said that knowing their out-of-pocket expenses in advance of receiving health care services influenced the likelihood of their seeking care.

Given reports from mass media, business press and regional Federal Reserve press releases, the short-to-midterm economic outlook may be softening, which is the signal that TransUnion is receiving in this health consumer poll.

The other side of this personal health financing coin is that one in four patients said reports of a weakening economy compels them to seek care based on their current insurance coverage for care they may have postponed.

This latter point suggests that for these people, there may be concern that their current health insurance coverage could be limited or otherwise “shrink” based on next year’s potentially slimmed-down health plan. Smaller companies, in particular, are already fiscally-stressed in providing health insurance to employees which can eat into profit margins. Smaller companies are less likely to provide health insurance coverage to workers, we’ve seen year-after-year in the Kaiser Family Foundation studies on employer-sponsored health care.

Providers that serve up cost transparency to patients fare better in this scenario, TransUnion explains. Health care providers, physicians and hospitals both, face a growing challenge of patient payables piling up, or not being paid at all. In this study, TransUnion found that one-half of patients didn’t understand how much they owed providers. When provided a clear picture of that amount at the time of the health care service, two-thirds of patients were willing to make at least a partial payment, TransUnion learned.

   The likelihood of engaging with health care costs varies by age, as the third chart shows from the TransUnion data. While most people across age groups do some kind of research on medical costs, a greater percentage of the younger GenZ and Millennial cohorts do research — noting that two-thirds of Baby Boomers do, too. But older people, the Boomers, would be less likely to change their health care provider based on cost versus younger people, the chart clearly shows.

Health Populi’s Hot Points:  Patients are payors, I’ve adopted as a mantra these past few years in the growing era of the great financial risk-shift of the high-deductible, along with growing specialty drug costs. This is the underpinning theme of my book, HealthConsuming. 

 TransUnion found that the percent of patients with out-of-pocket costs between $501 to $1,000 grew from 39% in 2017 to 59% in 2018. This is a household financial challenge for American families, who save too little and take on too much debt as the chart from my book illustrates.

Health care costs are a pocketbook issue for families at all income levels in the U.S. We’re witnessing growing consumerism in health care, we riffed on our consumer health panel at Health 2.0 yesterday, across different consumer and patient groups: some parents are dealing with the price of EpiPens for their kids; people managing diabetes have insulin sticker-shock and some are dangerously self-rationing or bio-hacking solutions as part of the #WeAreNotWaiting movement. All of these engaged health consumers will place votes in the 2020 Elections with health care on their minds. My bet is on people taking on their mantle as health citizens.

The post Worrying About Possible Recession Compels Health Consumers to Seek Less Care appeared first on HealthPopuli.com.

Worrying About Possible Recession Compels Health Consumers to Seek Less Care posted first on https://carilloncitydental.blogspot.com

[wee5macs]

When you tell your T1 that they have to bolus for everything that they eat whilst trick or treating...So grateful for Nightscout, so I can keep an eye on him and he can still feel like a kid! #nightscout #nightscoutformedtronic #medtronic670g #wearenotwaiting #t1d #t1dlife #halloween2018 #justwaitingforthecrash #oy #owenpatrick #diabadass (at Weemacs HQ) https://www.instagram.com/p/Bpnl-l_FrOI/?utm_source=ig_tumblr_share&igshid=adoqc37ydc2c

[notsurehowtodayendsblog]

It Doesn't Get Easier

I’m really careful of what I say to newly diagnosed families. I try to do a lot of listening. I try to get them to give themselves permission to be sad, to mourn. I try to make space for them to ask questions, if they want to, but I offer no advice. I never tell them it gets easier, because it doesn’t. It doesn’t get easier, but you do get better at it.

Penny was diagnosed shortly after she turned three, and sitting here a few nights before her seventh birthday, it strikes me that she has now lived more of her life with Type 1 than without it. The things that were hard about managing Type 1 for a preschooler are not the same things that are hard for a nearly first grader, just as I am certain there will be a shift again at puberty (the hormones), entering high school (the schedules), young adulthood (the distance). Coupled with each of these new challenges I know she will encounter, I know I will also be confronted with another, the pain and fear of letting go. I have been Penny’s pancreas for nearly four years. By the time she assumes any meaningful portion of her own care, I anticipate I will have been at it for well over a decade. By the time she effectively fires me completely, it will have been closer to two decades.

I am not exaggerating when I say, I consider Penny’s insulin needs and blood sugar every six to sixty minutes, twenty-four hours a day. And I have gotten pretty good at it. I can guess a carb count like a boss, administer a shot at a red light, test blood sugar by the pool, change a pump site while she sleeps. I have done all the research. I know what’s available and what is coming as far as diabetes tech. I can restart a sensor without a warm up period. I’ve hot swapped a transmitter. The people who know what this means, will know that it is a very big deal. I have even, standing on the shoulders of giants and with the support of the remarkable DIY community , built a closed loop system that hacks the various med tech devices, pump and cgm, and gets us as close to an artificial pancreas as you can get (#wearenotwaiting). I have gotten better at it.

The part that has become heartbreakingly clear to me in the last four years, is that in the grand scheme of things, this will be her road to walk and she will inevitably walk it longer than I will, and someday, she will walk it without me. I have no doubt that she will tackle it with the same cheerful optimism and ferocious tenacity that she she attacks everything in her world with now. I will do my level best to handle the inevitable hand off with grace and respect, to make sure she has all the tools she needs to be successful, to make sure she knows she can always come home and have a type 1 vacation complete with while you sleep site changes and full blood sugar management, always. I’m not naive enough to imagine that there will not be stumbles and rough patches, and for those, I am relying on her resilience and our relationship. May she always know that she is greater than her highs and lows, and that there will always be at least two types of insulin in mom and dad’s fridge.

I still remember coming home and not knowing how to feed her. Jim went to the market and bought canned soup, because it had a clear carb count and it was similar to something she had eaten in the hospital. We put her to sleep in her own bed, and I still remember the relief I felt when Jim carried her into our room after the first midnight finger poke. The sound of the lancet woke her up and she went scrambling away from him, like a cat you are trying to put in a bathtub. She finally woke up enough to let him hold her to calm her, and he managed to get a reading on the meter, but she couldn’t settle back to sleep, so he scooped her up and brought her to our room. She has slept in our bed from around 2:00am to sunlight, ninety-eight percent of the nights since then, and I’d be lying if I didn’t admit that it has always flooded me with solace, feeling her between us, her breath slow and even. Even now several nights a week, she still stumbles half asleep to our bed, with her iPhone, Riley Link and pillow, dragging her blanket behind her.

That’s what I want to tell the newly diagnosed families, the parents of those tiny kiddos whose bodies have betrayed them, fresh from the hospital with the bags of orange tipped syringes and tiny glass bottles and no fucking clue how they are going to get through the night, much less the next two decades. You will get better at this. You will learn, because you have to. You will spend hours analyzing data, because you have to. You will build apps and learn to write code and fight with insurance companies and lose sleep, because you have to. And you will get better at this, because you have to, but that doesn’t make it any easier that first night, or the next, or the night before their seventh birthday, or the night before they leave for college. It doesn't get easier, but it’s worth it.

For the entire month of August, in honor of Penny’s birthday, we are fundraising for Beyond Type 1, a nonprofit dedicated to education, advocacy, and the search for a cure for Type 1 Diabetes. Please follow the link to contribute to Pennies for Penny, our annual coin drive, lemonade stand, rollerskating funraiser in celebration of another year of living well with Type 1.

(The link above for the fundraiser may not work. Please check back for fundraising details, or contact me at kate@notsurehowtodayends.com)