I Held Hope in My Hands, Part 2 (the one with Anna, her Awesome Abs and the APP Trial)

April 9, 2013By 9 Comments
Anna -- who is amaze balls personified!

Anna — who is amaze balls personified!

Last week I shared how I HELD HOPE IN MY HANDS, and to be honest with you, I’m still kind of buzzing with a totally feeling of – to go all Guilana Rancic on you – amaze-balls. I honestly mean it when I say that while I’d truly been in on the discussion and idea of APP since nearly the ground floor, it wasn’t until I saw it in action on Anna that it truly clicked for me.

So today, an update. Anna and I spoke last night at length about her feelings at this point, and you need to hear what she has to say. Because it totally continues to inspire me.

On Monday morning, after a week of being attached to two pumps, a CGM, an IV and a full-time nurse; after having to have her finger pricked every two hours and not see the results, after being poked and prodded and questioned and discussed nearly non-stop, it was time for Anna to disconnect the devices, hand them over to the research team, and go back to a somewhat normal life; the life she’s known nearly all her life. (I should add after a week of totally exposing herself to the world, including photos of her abs with lots of machines attached to them and being totally cool about that). He reaction to being done with all that hard work?

Not wanting it to end.

“I almost cried when I had to give it back,” she said. “It was literally like the last day of (diabetes) camp. You know, you go to camp and you somewhat hand your diabetes over to someone else (counselors and staff). At first you are not sure you trust them but after a day or two, you just kind of kick back and let them do it for you. And it feels so good. Then it’s time to go and you just want to hold on. It took me a day to trust this, but once I did: I didn’t want to let it go.”

Because, she said, on the “bionic pancreas” as some are calling it now, Anna felt something she has absolutely no memory of, since she was diagnosed with Type 1 diabetes at six years old:

What it’s like to live free of the weight T1D places on a person both physically and emotionally every single minute of every single day. So while she was attached to a lot of stuff and had to put up with a lot (high five to Anna the hero coming in a bit!), the four day she spent with basically a flat line blood sugar in the 80’s (in the 80s!!) was among the most remarkable things she’s felt in her lifetime.

“I would wear 10 sites in my body if it meant the emotional toll of diabetes was stripped away from me like it was last week,” she said. “I would give up every asset I have to buy that thing tomorrow.”

And guys? I’ve known Anna a long time. Like so many who have had to grow up with something extra like T1D in her life, she’s joyful and strong, but she’s pragmatic. Not prone to hyperbole. Sensible and guarded about hope. She lived through the era of huge meters that took 120 seconds to count down. She was given the “promise of a cure in 10 years,” only to see that time pass and more decades pass. She’s laughed at the silly “new devices” that came and went (anyone remember that round “dex meter” that spit out strips from a wheel? Like that was going to change anything?) And here she sits: blown away by what the future could very well hold for her – and for everyone with T1D.

Because while she realized how amazing it felt while she was on the bionic pancreas (READ ALL HER BLOG UPDATES ON THE WEEK HERE), experiencing things like running three miles on a treadmill with barely a bump in her blood glucose, and chowing down at brunch (in a perfect nod to all that is right, joined by three of her closest Clara Barton Camp buddies) and still not seeing her blood glucose change much, it was after it was gone that she realized the true impact.

Because that first morning back to being Anna who manages her T1D so well, her blood sugars went back to messing with her. As she fought a 282 and all the familiar thoughts came back (Is it the site location? Is my tubing clogged? Is it stress? Are my basals right? Did I count the carbs wrong? Is it a new moon? Should I have chosen a different sock color?? ARRGGHHHH!), she realized this:

“While I was in the trial, the trouble-shooting went away. Completely away. And because of that, (listen to what she says here carefully folks: this is really something to grasp) I had no guilt. I had no shame. I was forced to give all that up to technology. And man, it worked and it felt good.”

 Guilt. Shame. Frustration. My friends; THESE are the complications of diabetes that few consider. These are the effects that crush soul of some and challenge the mental health of others. These are the complications we can CURE and cure soon. I know, a smart pump or APP or bionic pancreas or whatever you want to call it with bring people with T1D better physical health. If we can create a tool that keeps most people’s a1c’s below even 7, we are probably looking at world where kidney transplants, blindness and other such things are of the past.

But even if all it ABSOLUTELY does is remove that guilt, that shame, that anger, that frustration from lives …. I’m so completely, completely in.

 

 Anna’s brave journey has helped me with that. Anna admits she’s not a fan of technology. She didn’t even go on a pump until her college years, and even then was dragged into it. And the first day or so, after decades of watching over her own health on a constant basis, she had trouble trusting. But just like those camp counselors who won her over each summer, she grew to completely trust the system. And it didn’t let her down.

Now, Anna feels completely inspired to do even more than she already does for the diabetes world and research world.

“I have renewed motivation to make sure people know this really is something in sight; this really is something that works and can make life better,” she said. “I lived it and I can tell you: this removes 80 percent of what diabetes does to a person. And it’s coming.”

She went on to think ahead to when she can have it for real.

“The way I feel now with a high blood sugar I cannot explain or figure out? The droopy eyes, icky feeling you get when you are there? The frustration? The guilt and anger that yeah, Anna, you did something wrong again? I didn’t feel that even once for five days. I cannot wait until that goes away forever.”

Neither can I, Anna. Neither can I.

Stay tuned to GLU for more updates from Anna and more information on the program.

The hope I held in my hands.

I think if I picked up and touched it one more time Anna was going to throttle me. But here it is: HOPE that you can TOUCH!

Filed in: AdvocacyAPPAPP trialbionic pancreascool new diabetes toolscurefeaturedFundraisingglucose meterInspirationJDRFKids CanMassachusetts General HospitalMasschusetts General HospitalResearch Tags:

Comments (9)

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  1. Lori Schur says:

    It is amazing how universal the feelings are of all those living with type 1 and those that love them. As a mom of a 12 yr old with t1 I am so grateful to Anna for all she is doing and am more determined than ever to raise funds for JDRF to put this device into the hands of all type 1′s! Thank you for sharing this story!

  2. Pat says:

    I am so thankful that Anna let’s you share her story & her own words. They really hit home. When I think about myself & all the other T1D parents that dread our endo appts because of the A1C & how we feel graded & like Anna said “guilty or shame”. My daughter is feeling it now too for the first time in over 9 years, at the young age of 10 she’s already worrying about her A1C. Should a 10 year old have to worry? So I love hearing the stories of hope. thank you so much.

  3. Anna Booth says:

    “I would wear 10 sites in my body if it meant the emotional toll of diabetes was stripped away from me like it was last week,” she said. “I would give up every asset I have to buy that thing tomorrow.” READING THIS brought tears to my eyes- it’s my hearts desire for our 12yr old son…And for Anna, for all T1′s. Thank you for writing and reaching all of us, MOIRA!

  4. Michelle L. says:

    Hi, Moira! We have been following Anna’s journey through her blog on GLU. We are raising money for Dr. Damiano and the project that Anna just took part in. If anyone is interested in learning more about it, we have info at http://www.emmasdream.com

  5. Anna says:

    it brings tears to MY eyes to think how many people I have been able to touch just by sharing this. How could I NOT share? I’ve never seen anything like this-all the research thus far has involved pigs, mice, dogs, big deal. I mean i love my big fluffly golden retriever to pieces, but stop teasing us! this isn’t a tease-I wore it, and it worked!

  6. Jackie says:

    Thank you for this important, inspiring story. My son is 16 and I worry about what that guilt and shame are doing, all bottled up inside him. I know it’s there. My son expressed an interest in being part of Dr. Damiano’s study after meeting him at Friends for Life. Does anyone know if they are including teens at this point?

    • Moira says:

      not at this point — it’s 21 and older for the outside the hospital study. But check in with them for some in hospital study info for now! stay tuned too — this is progressing quickly.

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