Slopes

Curious and sad. Curious : sad ratio approx 3:1.

Dr. Lee

Dr. Lee’s

Saturday TCOYD Drs. Mary Lee + Steven Edelman individually present similar infographic re how T1D develops; Dr. Lee vis–à–vis TrialNet; Dr. Edelman, more generally.

Dr. Edelman's

Dr. Edelman’s

Think a lot about where assorted persons fit. Very interesting hear two talks re Type 1 happen s l o w l y. (Or quite often slowly.) Certain Bubs symptoms at least 1 year before diagnosis. So unfair! Parents blithely allow worse-worse-worse. Fast forward two years, parents know symptoms, and brother/mother benefit research study & KM60. Bubs already firmly planted @end of slope. Sorry.

Bigfoot attempt synthesize infographic w life. It Bigfoot version:

stars

Green star: where I think Jack is. Yellow star: where I think I am. Blue star: where I think TrialNet thinks Jack is. Pink star, where I think TrialNet thinks I am. White star: everyone agrees Bubs is here. Joe would be over to the left on the wooden table, drinking a latte with seven sugars and eating toast.

Meanwhile, end of one slope may be apex another. This week maybe Bubs begin descent Hashimoto slope too. If Hashislope exist. Bubs tired, only wants read/no play/not interested invite friends over or visit friends/pale/seems extra skinny (although symptom is extra fatty), actually said this sentence: I think I’ve lost my zest for life. Parents actually said this sentence: You can’t read anymore until you go outside for at least an hour. Bubs outside, walk slow laps around house, knock door, Has it been an hour? Can I read yet? Visit phlebotomy tomorrow, find out—anything? Difficult believe but maybe true: could be as simple as “Yup, this kid needs a Hashipill, and then he will be energetic and cheerful again.”

But also think notice vitiligo. Whiter patch shape of Martha’s Vineyard umbilical region.

And suddenly allergic (?) Inset 30 adhesive: tonight red flare-up in exact shape adhesive patch. Used to be just tiny pink dot mark previous cannula. Now distinct welt.

Also kid in trumpet class said, “Are you that kid who’s always like mommy, mommy, I need sugar?”

BIGFOOT: Oooh. I don’t like that. That would hurt my feelings

BUBS: I didn’t care. The kid’s an idiot and also very short

 

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13 responses to “Slopes

  1. Your kid is awesome. “The kid’s an idiot and also very short.” Sounds like how I describe idiots at work. I am so envious of Joe’s ability to drink sugar and eat carbs.

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  2. Amy

    There’s that similar graph in the pink panther book, only with ups and downs (labeled insults!) on the descent and yours is like an avalanche. You have me puzzling over it again, remembering things: 2 illnesses that stumped his doc, a few weeks when he was waking up starting to wet himself–all years before dx.

    Vitiligo? That’s the Michael Jackson thing, right? Our family doc used to say something like ‘Don’t go looking for zebras in the horse barn,’ if we worried. Then came the day she diagnosed our T1D. Haven’t heard her say it again.

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    • Katy

      I agree with that advice about not looking for zebras on a farm, and I guess I am looking for zebras, but I’m not entering an anxiety spiral. I’m just very curious.

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  3. I know those welts well. Bah. I hope it’s one-time thing, but if it re-appears & becomes an issue, hit me up. I have a whole slew of things you can try.

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  4. Linda

    When i got Graves, I was told that small percent react oppositely (?) to low/high thyroxin levels. When high they gain weight (SO hungry!!), when low they lose (I’m full. Leave me alone). That’s how I was too.

    Liked by 1 person

  5. Anonymous

    I love Bub’s reasoning…. kid definitely an idiot; glad he’s short, LOL. Our DD has had Hashimotos since a year after diagnosis… has been very easy to manage, a Synthroid pill a day. Not making light of it but so many Type 1s have thyroid problems, which is not surprising. Looks like you have your hands full with the Trial Net results; hope your other son and hubby, at least, are spared. So far there is no known way to prevent Type 1, even knowing the positive results of the test. Maybe that will change some day. It just seems as if knowing the results is very stressful. Not sure I would want to know in advance. You know the symptoms now and would notice immediately if another family member needed to be checked for it. Nothing you could have done for Bubs. Don’t feel bad.

    Liked by 1 person

  6. Pancreastic Mom

    My daughter was diagnosed with hypothyroid/Hashimoto’s one year after t1d diagnosis…went for her checkup and they called a week or so later with that shocker. I remember thinking “what’s going to be attacked next?” and then also, as the dr explained that hypothyroidism can make blood sugars harder to control and also described the way she was feeling perfectly, I thought, “oh, thank goodness all this can be fixed!”. I was thinking at the time “how will she ever make it in life…diabetes makes her feel horrible all the time!” when, apparently it was the low thyroid that was the main culprit. It took about 9 months to get the level right…going back every 6 weeks to check thyroid level until it was within a normal range. I think at first there was still some thyroid function, then as it slowly dwindled to nothing her dosage changed. Anyway, she is feeling much better. This is just a small blip on the radar of her daily care. I do wonder how it will affect her later as she gets older…but I try not to get bogged down with that:) There’s enough to concern ourselves with today.

    Liked by 1 person

  7. I have vitiligo. I also have severe sensitivity to adhesive that seems on again off again. Weird. Also, I hate short kids. When is Yale? You did decide to go, yes?

    Liked by 1 person

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