Auto-Correct

TrialNet day. Joslin.

Bigfoot LIFT study. Jack Anti-CD3 study. Both oral glucose tolerance test (OGTT).

(TrialNet Season One: episode 1 here, episode 2 here.)

0 minutes (fasting)

For entertainment, we half-watched The Jerk (HE HATES THESE CANS!) and half-watched Sea Pig.

For entertainment, we had The Jerk (HE HATES THESE CANS!) and the Sea Pig.

Jack 92

Bigfoot 103

NURSE: that’s kind of on the high side but pretty much where you were before; not that high really

***

1 hour p. OGTT official fruit punch

Jack 242

NURSE: that’s pretty high, but that’s not really the number we’re looking at; it’s the one at the two-hour mark that really means something

Bigfoot 95 (OMG! It worked; it really worked! Mental happy dance. Maybe it was the combination of gluten-free and KM60, all of the avocados…the fancy salt!)

BIGFOOT: Ninety-five?!?!?!

NURSE: No, one ninety-five (195)

BIGFOOT: Oh, ONE ninety-five. Okay

NURSE: That’s kind of high, but usually after the one hour mark we’ll see you sort of plateau or drop down a bit

***

2 hours p. OGTT OFP

204, is that good? No, it's technically diabeetus, but you'd have to do it twice. (Face.)

206.

Jack 206 

Bigfoot 276 Nurse disbelief/265 Nurse resigned, Bigfoot disbelief/Bigfoot self-administer Verio IQ (close eyes, third time charm) 293. Pffffft.

That’s that. Done. Walk 7 minutes Joslin—>Chipotle (It lunchtime; Bigfoot not wish repeat last time, i.e. attempted drive home sans eat, felt hypo/pull car over/sweaty-shaky/coffee milkshake drama.)

Chipotle. Begin order normal low carb bowl: lettuce, chicken, avocado, medium salsa. Add also black beans, corn (for carbs.)

I thought "I guess I feel oogy because that's a pretty fast drop in fifteen minutes. I better dig into this beans and corn carbfest."

“I guess I feel oogy because that’s a pretty fast drop in fifteen minutes. I better dig into this beans and corn carbfest which will surely give me a boost.”

Before eat, feel little bit oogy. Test. 106.

Half hour later, head back Joslin parking garage. Shaky, sweaty, ask Jack stop walking, test. 66. See Panera, suggest giant cookies; Jack consent.

Eat oatmeal raisin cookie part, feel sick, texture all wrong in mouth; sweet but same time nonfood. Raisins oddly small. Oats oddly…flake-ish, like substance ogre might cough up, phlegmy bits stuck in ogre-beard. Nauseated shaky sweaty, stomach so full lettuce/chicken/beans/ohhhh…continue walk.

Of course I felt well enough to take this picture.

Of COURSE I felt well enough to take this picture.

Feel worse. Feel like mmmmm wouldn’t it be nice to sit down in the snow? Maybe even face down in the snow, just for a little while? And Jack could go sit with those people in that bus stop shelter if he gets cold. Mmmm. Wouldn’t it be nice if this newspaper box were made of a melty soft Creamsicle material, and I could sort of stick my face into it and it would sort go up my nose and down my throat and in my mouth and get in my eyebrows and be all orange-creamy? Then think: you’re being weird. Then test: 50. Then: no, it should be made of melting frozen butterscotch pudding.

BIGFOOT: Jack, I’m low

JACK: Are you ok?

BIGFOOT: I’ll be ok

JACK: What should I do if you pass out? (<–always thinking!)

BIGFOOT: Just tell any of these people. We are right by a bunch of hospitals. I think that brick thing is a hospital. They’re probably all doctors. Tell them I need juice. Ask a person in scrubs, maybe. I won’t faint. Maybe I should eat more. Let’s not do a thing where you feel like you have to be the parent. That’s supposed to be really bad for kids

JACK: Okay…Mom?

Root through bag. Find Kind bar–nuts, dried fruit. Probably not recommended hypo treatment. Ugh. Ack. Too much texture in mouth. Feel each shard individually, grinding around on tongue, walk/eat/walk/eat. How persons ever swallow masticated Kind bar? Rubble. Put too much in at once. Entire bar? Could be wood chips/cardboard, but sweet. Jack pat Bigfoot back. Mom? Are you okay?

BIGFOOT: I think so. I can’t remember which way to walk. Let’s just walk in a straight line, or go around a block. I’m sorry

JACK: I think you have the opposite of diabetes. Should we go back and tell the TrialNet people? You made too much insulin

BIGFOOT: I guess I did. Bad timing though

JACK: No offense? But it’s like your pancreas is drunk. Or just really unreliable

Remaining portion day, feel weird. Start drive home, then stop. Pull over The Street parking lot. It necessary hypo recovery, or simply sudden keen interest browse Container Store? 137. Really sick, or could bad feeling be imagination? Something off. Maybe drink help. Buy Diet Coke. Terrible. Then Container Store. Jack patiently admire every fancy Post-it note, every dog biscuit tin, Russel + Hazel binder systems. I never knew so many things could be considered containers! Then acquire hot, milky tea. Tea weak, all wrong, not feel better. 197. Then drive. Then stop again. Choose cold drink again. Still not taste right. Not feel right in self. Can’t get to right feeling.

IMG_880945-minute drive take approx. 3.5 hours. Finally home. 100.

Gobsmacked. Not only not better, but instead worse. WTH going on in there?

And so much wonder real hypo person. How schoolchildren ever able learn, take test, brain all scrambled up, order of: can’t find parking garage straight line/one block away or decide hot or cold drink or determine if actually sick or just container-shoppy?

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32 responses to “Auto-Correct

  1. Oh. Oh. Oh. No.
    I don’t remember my first hypo, but I felt very panicky just reading this. You captured my head very well at 50.
    Something says to me that you’ll need Glucolift tabs in your purse.

    Like

  2. Larry Here

    Horrifying. Trying to decide if I should show this to my 6 year old T1 daughter. It’s powerful, and I wonder how it compares to her experience. Sigh. Love the blog. Dang.

    Like

  3. Katie Idler

    I have no words really.. Just feelings. Phone is not smart enough yet to deliver feelings 😦
    ::Double-sigh::
    Please put something in your purse for your “unreliable pancreas”; and give yourself a hug from me.

    Like

  4. I want this crap to stop. I want the world to reverse on its axis and rewind. I want superman to swoop down and save the day.
    This – these words – this is how I am certain my boy felt but could never articulate. Never share. Im thankful right now he didn’t have all your words. I think I wouldn’t have been able to hear it all. I would have just broke. I would have broke into a million pieces like I am now reading your words sobbing like a baby, wanting so badly to take you in my arms and rock you, stoke your hair and hug you so tight while I hum Every Little Thing IS Gonna Be Alright. I want to do the same for my boy.
    I get your posts in my email. My blasted email. I don’t get to all my favorite blogs each day, each week or even each month. Life is crazy as shit and time slips away. Still I get some of my favorites in my email. I was going to bed. I was setting alarms. Then I remembered I was waiting on an email. A different email. But there was your post and the damn cans. I love the Jerk and I love you so I thought ok I would read about the cans even though my eyes were closing.
    My eyes stopped closing because tears were in the way. I finished reading and in my head I replied. I said all this and more and thought Ill respond tomorrow. But no dice. I couldn’t wait. I wanted to run to you and just love you, love Jack.
    This response probably isn’t the right way to respond. Maybe just offer hugs. But hugs don’t seem strong enough. Not tonight. Not for you. Not that you are not strong. You’re one of the strongest.
    I don’t think I can express all my thoughts. I don’t have the words.
    I love you. I love Jack. I hate diabetes. Im sorry.
    Im also sure you got this and your boys are lucky they’ve got you.

    Like

    • Katy

      thanks for staying up late to read! i love the love, but i don’t feel that bad for us and so i don’t think i’m really being “strong” or anything like that yet. and i love THE JERK too.

      Like

  5. this sounds utterly awful and I guess something a lot of us go through on a daily basis. I don’t even really know what to take from this… what the hell happened?

    Like

    • Katy

      i should just say again that i only had this because of the laboratory’s glucose drink—that’s the hell happening. i know i’m lucky i don’t have to be like this all of the time. the one-day sample was plenty.

      Like

  6. So I see Tina beat me to it here. That’s good, because this story sounds a lot like one she told recently. You two should hook up. (No, I didn’t actually read any of the comments yet…and I didn’t mean “hook-up” in “that” way!)

    I’ve gotta tell you — these OGTT tests seem so primitive. They should just slap on a Dexcom; maybe not to help diagnose, but to help the person understand what’s happening, and what JUST happened, and what’s ABOUT TO happen (maybe get some research out of it, too). Sending you off into the wilderness seems like a poor decision, in hindsight. You’re one of the smart and educated ones when it comes to this. What if you didn’t understand?

    Yes, my ramblings in the last two paragraphs are my way of dancing around the thing I really want to say, which is this: I so wish this wasn’t happening to you.

    Like

    • Katy

      oh my gosh! i agree about the OGTT being primitive. it’s like beating someone up and then seeing how long it takes them to heal, but you stop watching them long before they even heal…? i don’t think i should do any more OGTTs. we can predict with near-certainty that i will fail every one of them, i don’t think anyone is really learning anything from that.

      also, since i have only ever done an OGTT with another person who is high(ish) at the end, i am convinced NO ONE can conquer that test.

      Like

  7. This is so perfect as to what I feel during a low. Down to the bizarre thoughts about lying in the snow and creamsicle newspaper boxes. And I would bet that your rest of the day generally-garbage feeling is that which we scientifically know as a low hangover; it’s also described pretty spot-on.

    Like

  8. Linda

    Oh Man. Ohhhh. Now you know for reals. And these were “Medical Doctors” who tiddlywinked you onto the bg rollercoaster and sent you and your child out onto the street with no juice?? Make sure they hear about it. Grrrrr. Does this mean both (all three) of you are diabetes bound? I am so so sorry.

    Like

    • Katy

      I don’t think they think someone would be low after an OGTT. I think is, not unprecedented, but weird and rare. Aren’t I supposed to have allegedly damaged/inefficient B-cells or B-cells under attack? I wrote to tell them what happened. Maybe there is a different study for anomalies like your friend me.

      Like

  9. Last night in the darkness of our bedroom as we fell asleep, I told Tom all about how special you are and your boys and that this shouldn’t be happening to you.

    Like

    • Katy

      You’re too kind. We deserve it every bit as much as you do. (By that I mean we all deserve it zero. And wouldn’t it have been awful if KM60 cured me? Instant social pariah.)

      Like

  10. well. ain’t that some sh!t. (ain’t that some sh!t)

    i mean, thank you for putting into such evocative words what it feels like to be low.i appresh the insight. i bet when my kid reads this she’ll be all OH MY GOD THAT’S IT EXACTLY. or similar.

    was jack making the maroney face on purpose? it is perfection.

    i’m glad the joslin vhs library provided such a great distraction before all hell broke loose.

    Like

  11. I love your blog. And I love you. Even though I don’t really “know” you in the real sense of knowing someone, I feel like I know you. And I hope you are at FFL 2014 so I can really know-know you.

    So is Jack going to have a second OGTT? I am too chicken to put Livie through a second one, so I just run her blood once a year and do random checks as needed. I not brave like Bigfoot.

    Like

    • Katy

      I think the next thing is to get the official numbers from TrialNet in…Miami? Wherever they send the tubes of blood. The numbers we got were just from a standard meter/strips.

      Like

  12. Wow … WTF? … so sorry that happened … though so cool you’re son was their concerned and looking out for you … sweet really

    Like

  13. Oh crap – I’ve been away from blogs for so long, and I was deeply hoping that the last glimpse I had on your blog of Bigfoot’s impending T1D was wrong. I just decided I must’ve misunderstood the words. I’m so sorry that Bigfoot also have diabetes. Bigfoot need Hollywood agent for to license life story. Sending best possible thoughts to Bigfoot and amazing family.

    Like

  14. WHAT A FUCKING NIGHTMARE!

    Like

  15. Oh my goodness. I am so sorry. I am glad you didn’t sit in the snow, but I wish this could’ve gone better for you! I’ve walked into the eye part and said “I need juice” even though that’s not where my appointment was and they got it immediately. They will absolutely help you next time. Although, let’s hope there is no next time.

    Like

  16. And THAT’s why OGTT aren’t used in typical circumstances to confirm diabetes (anymore). A1c, antibodies, we just have much better ways of testing.

    I’ve had a few pregnant friends have that reaction to their OGTT. I wonder if it is something similar to reactive hypoglycemia that causes a reaction like that. OMG! SUGAR! RELEASE ALL THE INSULIN!

    Intrigued to hear the official results when you get them.

    Like

  17. Katy, for whatever it’s worth, I think of you guys often (way more often than I’m able to drive-by comment).

    Lows are something that nobody can understand until they’ve had them, and it just sucks that you understand now. It just sucks. The way they can cripple the one thing you need to get out of them safely (brain) is so unfair, and it’s impossible to describe (though you did a damn good job here…).

    Like

  18. Pingback: Special Retentive | Bigfoot Child Have Diabetes

  19. Pingback: TrialNet (Argo) | Bigfoot Child Have Diabetes

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