I Can, Can I?

Happy diabetes blog week! The theme today is I Can.

I can go back and CHOOSE A WILD CARD if I feel incapable of listing abilities.

I can WORK THE GIZMOS and MATH THE FOOD.

I can FAKE IT: curling up and dying inside while making an almond flour pancake and calling people sugarlumps.

I can BELIEVE it’s the human condition that the feeling of being overwhelmed comes and goes and will certainly go away again at some point.

I can REMEMBER to not compare my insides with other people’s outsides. I can barely remember to do this one. (And I can not remember where I read this advice.)

I can PARTICIPATE in D-Blog Week and TrialNet simultaneously.

FullSizeRender

For the movie, we watched About a Boy.

Today, at Joslin…

Teplizumab CAN stop the progression of T1D in the siblings of children with the disease. Or at least it can and has in one of them. One of my ones.

T -15: 97 mg/dL (Fasting. Meh.)

T +60: 181 mg/dL (One hour after the drink. Borderline abnormal but irrelevant; no one cares about the 1 hour pp.)

T +120: 128 mg/dL (Two hours pp: totally normal. And this is the one that matters in this game.)

I can GIVE MEDICAL ADVICE: sign your children the fern up for this study!

IMG_3018

TrialNet memento. It includes several opportunities to quantify your use of margarine.

Actually, I don’t feel that strongly about it. Everything with TrialNet is complicated. Am I glad one of my kids is cured*? No. I feel terrible.

This drug is depriving my other child of probably/maybe exactly what he needs: his big brother, who’s totally together & good at everything, to get diabetes. That would be perrrrrfect.

I mean I know I can’t make one child get diabetes in order to keep the other one company, but I CAN turn almost anything in to a hideous snarl of emotions.

*For the time being, who knows how long it will last, etc.

I can't believe it's not margarine.

I can’t believe it’s not margarine. And wheat.

Read more I Can.

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13 responses to “I Can, Can I?

  1. Katy. You are so many good things and in particular an incredible manager of B’s T1D. Few people know of what you do. If they did they/we would know how blah they/we are compared to you. I hope you have more good days than hard days around this. You deserve it. Xoxo.

    Liked by 1 person

  2. Your situation is so unique. One child with Type 1 while mom and brother are trying not to (but destined to) join him. I have no advice but think you are a super mom and wish that I could come live at your house:-)

    Liked by 1 person

  3. I can’t pronounce Teplizumab, and I can’t find the motivation to try to cook the delicious meals and snacks you write about.

    But I can appreciate and enjoy reading everything you write, and I can respect everything you and your family go through, because it’s so raw and real and relatable (in parts). If Bigfoot Child Have Diabetes-The Sitcom, gets picked up next season by CBS, I’m definitely setting my DVR so I don’t miss an episode.

    Liked by 1 person

  4. Oh my goodness, you have a lot going on! How you hold it together — and blog about your journey — is admirable. My husband tried to sign up our boys for Trialnet at a JDRF conference on Saturday — our younger one was freaking out though –“I thought this was optional!” Unfortunately, the person who does the paperwork was in a session so we weren’t able to do it after all. My younger son has had some “signs” that could just be our imagination but with the recent conference on our minds, I did a blood sugar check on him at bedtime. 98 — whew. As I did it, I thought of you and others in a similar position. How you wrap your mind around this and cope? You have strength… I will follow through and get my boys enrolled. Knowledge is power (and anxiety provoking). Best wishes to you, Katy, during these limbo times!

    Liked by 1 person

  5. skchrisman

    To feel anguish over this complicated success has to be very difficult. Thank you for sharing yourself. You can. You are. I look forward to tomorrow’s post.

    Liked by 1 person

  6. Love “Math the Food!”

    Liked by 1 person

  7. Your Trialnet experience is so interesting… I can’t wait to hear more about it. But honestly, I have not done Trailnet for my two others. Mostly because they’re so little. I used to be of the mindset that if there is a train bearing down on me that I can’t avoid, I’d rather not know. But after reading about your experience I’m all for something that will help me to outrun it.

    Liked by 1 person

    • Welllll, they’d have a 50% chance of getting the miracle infusion IF they were found to be in the weird category of being on the verge of being diagnosed…a category they’re 99% likely not in anyway. Or maybe 99.999%.

      Like

  8. You can be someone I absolutely adore and admire and want to be like when I grow up. Except that I’m older than you, but you have accomplished so much more than me so I still will say “when I grow up” because you are much more grown up and together than I am!!

    Liked by 1 person

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