FFL 2013 Recap

Water slide: A++

The good

One angle on FFL2013: feeling of. Other angle could be: Bubs’s feeling re. Only for now able say what learn. Need sift through notes not lose any knowledge. List edifying kernels below.

Stuck bunch of random pictures in too.

Moira M’s Keynote

  • The things that scare you can be handled: the (giant, frosted) Cookie of Death
  • Surround yourself with people who give you confidence & say YES!
The bad

The bad

Tom K’s Keynote

  • He is sorry that people misunderstood him re Biohub, and in an unrelated incident someone painted a swastika on his car
  • He put together a lovely slideshow of D-kids doing all kinds of sports while the heart-in-throat Defying Gravity song from Wicked played, which made us sad, because we never really thought D-kids couldn’t do sports, and then toward the end of the slideshow it morphed into slides of D-people weddings, which made us sadder, because we’d never really thought of D-people as unmarriageable or of ourselves as needing reassurance in these regards

Positive Caregiving w. Dr. Jill

  • Fear/anger never change behavior
  • 97% of people diagnosed in last 5 years will have no complications at all period (based on review of Scandinavian epidemiology) (?)
  • You can’t hold someone accountable for behavior they exhibit w. BG < 70 because they are mentally impaired
  • Acknowledge that this is tough, exhausting, and sucks

Dr. Jill very nice eyeglasses.

And the ugly

And the ugly. You couldn’t do this worse if you tried.

CGM with Gary Scheiner

  • There are FDA-approved meters on the market less accurate than Dexcom G4; it would be folly to calibrate the Dex with one of these. He mentioned Verio IQ (and many others) as good-enough & currently available. He did not say “folly”
  • Dexcom is less accurate on Day 1 (+/- 16%); by Day 2 it is +/-9%
  • Lag time 10-15 minutes (i.e. screen displays BG from 10-15 minutes ago)
  • For a complex biochemical reason, CGM will display low BG for much longer than BG actually stays low
  • Balance benefit/nuisance of high-low alerts: start w. low threshold 80 (so can catch/act before severely low) and high threshold 300 (bc otherwise too annoying); work toward 80/180 slowly as/if tolerance for false alarms grows
  • He mentioned something about meter coding. Joe leaned over, looking somewhat ashen, to whisper Does our meter have a coating?
  • Sensors are like fine wine; they get better with age. The adhesive might irritate the skin, but the filament won’t cause trouble; leave the sensor in for as long as it keeps working. Can be 20-30 days
  • It is OK to cover the whole thing with Flexifix tape–no need to cut a hole–fine to plaster right over the sensor

(Bigfoot try cover over whole thing w. Flexifix @ home. Result is looks like yucky cod filet under Glad Press ‘n’ Seal wrap; makes transmitter sticky. Conclusion = not recommend.)

Social Media (Scott, Kerri, Jessica)

  • There was a hilarious woman in the front row. I learned later this was Tina (Christina?) from Stick With It Sugar
  • Another fun part was people describing adolescents seeking porn winding up at T1D Kid blogs: Sweet Girls (porn-free name: Candy Hearts Blog)/ The Perfect D’s Boobies post
  • Many unknown people @FFL think you will know who they are—>study in advance or embrace the role of rube
  • My favorite turn of phrase from the whole thing was “SEO from the heart,” so I wrote that down, but I don’t remember what it was regarding
  • I felt extra shitty about my child being mortified by my blog during this session and so I didn’t take many notes
  • Someone asked me if I was “Kathy” from Bigfoot Child and I said no, and I didn’t want to presume she meant me, because then she would have been like “Katy? Who? No. I was looking for a Kathy” and it would have been so deflating

    I can name each of these people by name (and some with first and last name) and by blog

    I can name each of these people by name (4 with first and last name, but 2 of those are Joe and me) and by blog.

Pumping Tips and Tricks Lorraine Anderson

  • Disconnecting, even for a quick shower, can lead to highs—remember the missed basal & tack that on before disconnecting/when reconnected
  • Make sure your homeowner’s insurance covers your pump (eg in case of theft from your beach bag) or have your agent add a rider (?) for $20/month (/year?) to cover it
  • Yell BINGO when IOB is same as correction bolus (<—Lorraine did not really say “yell BINGO,” but indicated this is cause for mild celebration)
  • If you use <35 units/day, fill your pump from a pen cartridge. Vials are too big; pens promise always-fresh insulin

Bigfoot totally gonna ask endo switch Rx to pens not vials. Freshness.

I learned so much

FFL Enthusiasm: I learned so much that I did moves like this.  Minus 90% for exercise amidst a long-term combo bolus for weird food that probably equaled out to just not bolusing or adjusting basal at all.

Glycemic Index w. Gary Scheiner

  • Fatty foods make us temporarily insulin resistant (“like having Type 2 on top of Type 1”), ergo pizza highs
  • Glycemic index measures how much of the food becomes BG within 2 hours of eating. Spaghetti’s GI = 37. That means 37% of its carbs will be BG within 2h; the other 63% will kick in later
  • Mixed meals: the GI gravitates toward what the bulk of the meal is. Eat the lowest GI part of the meal first; that will slow the rest of the carbs down (eg eat salad first)
  • If you haven’t eaten for a long time = speedier; if you are active right after eating = slower
  • Don’t go crazy with specifics. Just keep in mind in general what’s fast/slow/medium & use combo bolus to match your insulin action to your meal’s effects. A good place to start a combo bolus could be one-third up front and the remaining 2/3rds over 2 h
  • Read the New Glucose Revolution books by Jennie Brand-Miller
  • Grape juice is faster than other juices
  • Breakfast cereal is faster than jelly beans
  • Bread is the pits; sourdough & pumpernickel are slower than other breads (bc of acidity)
  • Fastest candies: Spree, Smarties, SweeTarts, Airheads, Nerds, Runts
  • Although fatty, french fries are fast: “It’s hard to slow down a potato”

Joe Solowiejczyk

  • “When they discovered Tab and Fresca, for me, that was like the discovery of insulin”
  • D-kids heal just as well as everybody else. Let them get cut and bruised
  • He uses the term “schlamozzels” in normal speech
  • “If the parents have their shit together the kids will be OK”
One of our many T-Slims

One of our many T-Slims. I also purchased nine jugs of Glucolift. That was a bit over the top. Chris Angell was wearing a Babar shirt.

Curious phrases overheard in hallway/at meals

  • Jersey Shore diabetics
  • Mannish vibe
  • Neck physique

Best pharma swag

  • Sucrets tin made to look like T-Slim pump, filled with Glucolift. We came home with six of these
  • Lenny the Lion stuffed animal with zip-open back. (For storage of Skittles?) I don’t really like the stuffed animal, I just liked watching Joe suffer through the Medtronic sales pitch
  • One company gave away zero carb sno-cones; no idea who. But fun! Thank you
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35 responses to “FFL 2013 Recap

  1. Linda

    As to Tom K’s bullet #2, agreed, sad and unnecessary. Never occurred to me as a younger D that any of those things were in any way heroic or off limits to me. Nor were they. Gary Sch,? Now I get why you LOVE him. Joe Solo: “If the parents have their shit together the kids will be OK” = TOO MUCH PRESSURE!! But, the kids WILL be Ok, anyway. Lastly, one cannot over-buy glucose tabs. Life goes on, and on. FFL sounds really intense! Thanks for sharing.

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  2. Carey

    Chock full of handy bits of information. Thanks! I’ll have to to make it down there one of these years. Sounds great. Sorry to see you had some rough sugars.

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  3. Great recap, Katy. I’ve never been myself and think at this moment I am happy to pick through the good bits of what others say about it in order to avoid the less tasty chunks. Our one local experience of this kind of community sharing/ commiserating/ hand holding wasn’t that helpful in terms of preparing us for managing diabetes according to our specific lifestyle, but it was good for walking around a room with other parents of cwd and recognize that look in their eye without ever saying a word.

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  4. I’m bummed that I got to go last year but missed it this year.
    GLUCOLIFT is the BOMB and Chris Angell is a wicked cool (and well dressed) guy!
    The Lenny Medtronic thing is ridiculous. that is all.

    I loved everything you wrote here. I loved that it was all in point form because this is the first post FFL blog post that I’ve read that I’ve actually gotten something from. SO THANK YOU for sharing!!

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    • Katy

      Thank you for being so nice to me.

      Most of the people I’ve read are in a phase of rhapsodizing about how awesome FFL was, and are as yet unable to say specific things because they are on this intense FFL high. I don’t think I caught that high. Maybe a whiff. I was all “there aren’t enough raw foods,” and “we have to avoid the princesses and mascots.” I think everyone else was like, “I’m finally home!” and “This is my tribe!” and things.

      An exception to the not saying anything specific: Briley’s expose of the (actually sweetened) unsweetened iced tea at inDpendence.

      Like

  5. Oh I love Dr. Jill. I think she might think I’m crazy, though, because I approached her mid-wine-buzz and told her that I wanted to fly her down to FL to be my personal therapist.

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  6. Fabulous recap, wish I could have been there. Hopefully next year! especially liked the part about the GI stuff. I really need to learn more about it!

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    • Katy

      I’m definitely going to read the books he recommended. But it seems like the main thing about GI index we can do without going insane with more #s is: eat a balanced meal and do a combo bolus.

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      • Did he give a rec for how long the combo bolus should be and what split? I try to master pizza with a combo bolus (never works, but I shall keep on trying!). I pre-bolus for most of my meals and that seems to work well.

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      • Katy

        I am pretty sure he said a good place to start would be 1/3rd up front, and then 2/3rds over 2 hours. But of course he clarified that we’d have to wiggle toward success depending on our bodies/the food from there. (And he has the 1/3rd part as a pre-bolus by 20-ish minutes.)

        I just reserved a bunch of the New Glucose Revolution books at the library. There are a ton.

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  7. Heather

    I’m interested in the advice on insuring the pump. I tried, but the insurance co. refused because it is a medical device. I guess I’ll keep trying.
    The Lenny the Lion thing was a hassle. Just give the stuff out like everybody else. If people are interested in your product, they will ask. I don’t mind one brief sales pitch, but having to go through 4 in a row is annoying.

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    • Katy

      Someone mentioned that (medical device problem) in the session. I am not knowledgeable about insurance so I got lost in the terminology—why isn’t it just like insuring my diamond tiaras?

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  8. Great recap! I would like to ask you to share what I could have done better with my talk — I feel badly that it seems to have felt so trite to you. Ugh! Input is most appreciated. I cared deeply about that talk and understood the chance I was given …. so how could it have been better so that it would have been something you had better takeaways from? In other words, what do you expect in a keynote like that?

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    • Katy

      Oh my gosh! Not trite at all! I loved the story of the giant cookie of death. I think I remembered that part as major (not trite to me!) because it struck a chord with me. I loved your talk last year too.

      The way you speak about D is very moving–in the most forward-looking, I Can Do This and My Child Can Do Anything way.

      I remember a gazillion other things you said as well—facing the cookie of death was just my favorite. For me, that was the…gestalt(?) of what I took away.

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  9. Such good info here – makes me want to go study up on glycemic index stuff now! It’s only taken me close to 20 years to even begin to understand how foods and insulin mix within my body to output what my blood sugar becomes. You are getting such a good handle on it already – Bubs will be a pro much sooner!!

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  10. “….which made us sad, because we never really thought D-kids couldn’t do sports, and then toward the end of the slideshow it morphed into slides of D-people weddings, which made us sadder, because we’d never really thought of D-people as unmarriageable or of ourselves as needing reassurance in these regards…”

    I am sorry that you took my slide show as being a sad. My attempt could not have been further from that attempt and so many came up to me during the conference and thanked me for the point I did attempt. It was by showing kids who DO LIVE every second of every day to the fullest with diabetes that we can all achieve that goal. It’s hard to ‘hit the mark’ with everyone, and everyone is at different stages in this diabetes journey at the conference.

    Many parents shared with me the feelings they have; it is those feelings I tried to address.

    Your writings have clearly shown how you understand this point better than most; others at the conference are not as strong and are still very new at trying to get back to living a full life.

    I welcome any advice you may have to help me achieve these goals better. Feel free to email me at tkarlya@drif.org

    Thanks,
    –Tom

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    • Katy

      Aw, I don’t have a speck of advice. I tried to imagine your slideshow with Olivia Newton-John’s “Let’s Get Physical” or Dr. Hollywood’s “Make You Sweat” — it still would have made me cry. But with your song selection (i.e. Defying Gravity), the tears were coursing down my face by the end! And I even enjoyed the crying. I didn’t mean to complain about the slideshow. I just felt…conflicted (?) about the idea of celebrating kids doing regular things, because our kids are *every so slightly maybe not even just barely* disabled.

      Like

  11. kelly2k

    I think Dr. Jill thinks were all a little bit off our rockers!
    Also. YOU ROCK & wish we’d had more time to spend together!

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  12. Loved your recap… Next year can you come to all the sessions I go to and take notes for me? I also remember the SEO thing but have no idea what it means or the context.

    I miss my brain.

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  13. Nice notes! Need to try taking notes next time … Or better yet … I can just read your blog 🙂

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  14. Oh Katy – where do I start with all the kuddos I want to give you for such a great recap.
    Moiras big cookie – Yes. Shit will scare us but we will get through it all by just saying yes. I like being part of the yes club. Man I wish I would have gone to Jills session – lets do it over so I can go. Gary’s always spot on and I want G4s for my kids. Thanks for the shout out – but Im not all that funny but also if it allowed you to find me Im thankful for my bigmouth. The blogging awesomeness in the social media session was incredible – to be in a room with you, Wendy, Christal, Lora, Shannon, Joanne, Moira, Kerri, Scott, Jessica and more was amazing. Glycemic Index stuff still hurts my head. Joe S is da bomb and while he does put a bit of pressure on parents I can’t help but think he is right much of the time although Ive had the great pleasure of meeting some adult pwd that kick dass but whose parents were less than supportive. Wish I had attended his session – I skipped it because I had heard him talk a number of times and thought I knew it all – clearly I don’t because Ive never heard him use the word schlamozzels – now I feel cheated. I had never heard SEO and I don’t have a clue what it stands for – sorry Im so not helpful. We ended up with 3 stuffed Lenny’s but we already have 3 mini Lennys and a big Lenny – thus Im mailing out mini Lennys to friends. For the record I did not sit through any sales pitches – the kids got them (probably snagged them when Medtronic people weren’t looking). Glucolift rocks as does Chris (and his dad). I brought home 4 – wish they were sold in stores.
    Fabulous recap and great responses to the comments. Of course Scully’s comment is causing me anxiety because Im not sure I can do as well as you and she said yours was the best.

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  15. On Moira’s keynote: after handling the frosted cookie of death, wash your hands before testing. Otherwise, the meter might suggest that the death is even more imminent.

    On Tom K’s keynote: I *have* thought those things. Who would want to marry someone with as much baggage as me? How can I play ice hockey AND pump insulin? Fortunately, a girl who stuck by me through two emergency-room-grade hypos answered the first. A YouTube video answered the second.

    On Dr. Jill: I’m scratching my head on how she drew a conclusion on what will happen EVER based on, at most, 5 years of data.

    On Gary Scheiner: It took Wil Dubois’s book to teach me the importance of accurate calibrations, and how we often blame the CGM when the calibration itself is the culprit.

    On Bigfoot: Cod filet under Glad Press ‘n’ Seal? What a visual!! I’ll never look at a Dexcom transmitter the same way again.

    On Social Media: I saw the name tags in the photos, with the leading “Chris-” missing. Now I’m not sure what to call her. I feel like I’ve been duped. (Also, a tip-of-the-hat to Kerri’s “disco boobs”. That phrase never gets old!)

    On Lorraine’s pump tips: I just realized this morning that my basal rate is as its highest in the morning — when I disconnect to shower. I actually read that note just after giving myself a missed-basal correction. I wish the pump could do that automatically. (And a pen cartridge? I average about 30 u/day, so it’s something to think of. But how can I think of freshness after that cod-filet remark?)

    On curious phrases: Yay for “Jersey Shore diabetics!” Anything Jersey or Jersey Shore related (except for the TV show by the same name) is awesome in my book.

    Thanks for the entertaining recap!!

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  16. Eileen

    Thanks for the recap. I look forward to hearing what you picked up. Have to get there next year. I saw Dr. Jill speak locally here in Chicago last year and she was great. A few things she said then stuck with me…mostly when she said that every time you test you are winning because you are taking control and doing something about the #. Swear, I teared up at that. She also spoke about teens/ going off to college. Even though my son is only 10, I found her fascinating. She had a very practical, real world approach.

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  17. Did I tell you enough how much I enjoyed playing basketball with Joe? Probably not – I really enjoyed playing basketball with Joe! 🙂

    And I’ll give you bonus points if you can name the FINGER on the lense in the pic with all of you awesome bloggers… Haha!

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  18. Pingback: Diabetes Thoughts and Notes | SurfaceFine

  19. Thank you so much for taking notes – I LOVE notes! Data good.
    And, setting aside statistical significance from 5 years of data, I still love the prediction about 97% of T1s dx’ed today not developing complications. Hard not to see a high and think, “There goes an eye.”
    Maybe we’ll make the haul from the west coast some year. Hey, isn’t there a Disney in CA somewhere?…

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  20. Pingback: {Type 1 Tuesday} 09.03.13

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