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After 36 years of type 1 diabetes (#T1D), the last year or 2 have been tougher than usual. Patterns shifting bit by bit, my old tricks not working so well anymore, hypo unawareness getting worse, lows coming out of nowhere, increasing fear of travel, fear of driving, less energy.
I started using versions of this slide at the start of my talks earlier this year. The unpredictability had started to bleed into my talks. (“Hey, this isn’t a pager, it’s a medical device. It might beep. I might need to check it. I’m not being rude. I can’t turn it off. Sorry.”) A slide with photos: a small girl colouring, a test tube urine testing book, a woman with a sensor in her arm, a meme with
I developed a new side effect of low blood sugar: deep despair that lingers for hours. It’s about as fun as it sounds, sweeping in for a leisurely stay on the heels of brutally disruptive out-of-nowhere lows. I already hated hypos enough.
I cried in an endo appointment. First time in 36 years. I didn’t cry when I was a child and the endo was concerned about how my home life was affecting my health, asking me probing questions that made me feel so very alone.
I didn’t cry when I was pregnant with my first child, and the endo told me, “You know, I had another patient like you once. Smart, well-controlled. She came in for an appointment on Tuesday and everything was fine. Thursday, her baby was dead.”
(That was Anne Kenshole at Women’s College Hospital in Toronto. I held my tears back until I made it to the bathroom in that old building on Grosvenor. I heard she was a good doctor to the people who asked fewer questions. She’s retired now.)
I watched the DIY artificial pancreas movement with interest for years. I dabbled a little, but only went so far. I was always lacking either equipment, time, or motivation to significantly change what I was doing. But I thought it was fantastic & said so.
Then I started to struggle. So bit by bit, I finally got my stuff together and got the required equipment together to build Loop for myself. Then, after putting it off for months, I decided to make the time one Sunday.
I’ve lived a lot of changes in T1D management in 36 years. I’m not quite so senior & accomplished that I had to boil glass needles on the stove, but I started as a kid with beef and pork insulin, test tubes and urine testing tablets.
I loved my wooden test tube stand my dad made for me with a drill press and scraps of wood. It sat on the bathroom counter, and it helped me test for glucose and ketones without getting quite so much pee on my little kid hands.
Home blood testing changed my life a little, analogue insulins changed it a lot, my 1st insulin pump gave me much more energy, continuous glucose monitoring gave me much more security. Now DIY closed looping has totally transformed my life for the better. loopkit.github.io/loopdocs/faqs/…
I was 94% in range last week, SD 1.4 mmol/L. When I’m tired in the morning, it’s likely because I was working late, not dealing with T1D. I’m able to be more active, more focused, less anxious. I’m starting to feel like myself again. I've started tackling side projects again.
I did a backcountry hike with my husband & 13yo this summer--a loop, as luck would have it. The hike had history for me and my husband, and was a good summer to do something with our eldest, but it was hard and I got sick. Loop mostly just … handled it.
DIY looping is not perfect. I’ve had glitches--some technical, some user error. It’s still a lot of work, but most of the work happens on my schedule, not T1D’s schedule. After a lifetime of T1D running the show, especially the last couple of years, that is just amazing to me.
And I feel kind of guilty to be so over the moon right now when I know others are out there struggling. Among other issues, there are people struggling to access insulin. INSULIN, FFS. It’s unconscionable and immoral. The world needs #insulin4all. t1international.com
Access to insulin should be the very bare minimum and never, ever in question. Insulin is just the start.
People with T1D, especially women and those diagnosed at younger ages, have shortened life expectancy. In a recent study, the group I’m in (women diagnosed before age 10) had the worst outcomes: life expectancy shortened by 18 years. thelancet.com/journals/lance…
One of the most impactful things I’ve ever heard from a conference speaker came from @KateFarnsworth at the @_DiabetesAction workshop in May: “We don’t have to settle for the status quo.” It applies in so many ways and in so many contexts.
This particular suite of transformative tools came together because people decided #WeAreNotWaiting for medical device companies. They were unwilling to settle for the status quo. nightscoutfoundation.org
Parents of T1D kids, people with T1D, spouses, others worked hard to find ways to build things, then shared their findings with the T1D community for free. Community members built on each other’s work & shared the results for free. Community members support new users, for free.
It’s such a beautiful example of what communities can do, together. Thank you forever to every person who has ever played a role in these efforts. Chapeau.
(N.B. Chapeau is a French expression that sort of loosely translates as 'I tip my hat to you.' It conveys admiration, respect, and sometimes thanks, all in one word.)
This thread is getting some (very mild) buzz in the medical community so I’m adding more tweets to offer a list of leaders you might consider following. These are people I know of who’ve played major roles in making systems possible & usable. There may be others I missed, sorry!
@danamlewis @KateFarnsworth @kdisimone @scottleibrand @ps2 @kozakmilos @howardlook @loudnate @bewestisdoing @WeAreNotWaiting (I just took my own advice, as I was previously only following Dana and Kate)
Also, if you care about people with T1D and can afford to do so, consider donating to @t1international @NightscoutFound. These are T1D community-run orgs. I personally have a small automatic monthly donation to T1international. I recommend.
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