November 9th D-blog day

6 Things I Want People to Know About Diabetes:

1.  Diabetes isn’t controlled, it is managed.  People who have diabetes can be under control, but their diabetes is managed…never controlled.  You can’t control this disease you can only manage it. 

2.  Diabetes is not better or worse than cancer.  Cancer kills, diabetes kills.  Cancer hurts, diabetes hurts.  Cancer has long-term effects on people emotionally and physically.  Diabetes has long-term effects on people emotionally and physically.  There are treatments for both cancer and diabetes.  Cancer can go into remission, or be removed permanently…or it will kill the individual.  Diabetes can not go into remission, or be removed permanently, but it can kill an individual (and does).  I would not wish cancer OR  diabetes on anyone…I would not suggest one is better than the other either. 

3.  My daughter is 4.  She was diagnosed at 3 years old with Type 1 diabetes.  She received no less than 5 shots a day and 10 finger pokes a day for the first 4 months of her diagnosis.  At 5 months diagnosed she was able to wear an insulin pump and continuous glucose monitor (CGM) to manage her insulin delivery and better track and manage her blood glucose levels.  She is 3 feet 5 inches tall.  She weighs 42 lbs.  She has a plastic “pod” stuck to her body 24 hours a day, 7 days a week.  She has a plastic sensor stuck to her butt 24 hours a day, 7 days a week.  She carries a monitor about the size of a large blackberry that she is responsible for carrying with her at all times.  If it is lost, replacement is $400.00 the first time, $600.00 the second time…we’ve lost one to the swimming pool Gods.   Ellie has not yet complained one time about having these devices stuck all over her body, or hanging on her body to date.  She gets a new pod every 3 days and she gets a new CGM sensor on her butt every 7 days…if she doesn’t cry with the insertion of these two devices it’s because she had to really, really try not to.  The insertion of the pod canula is a small sting, the insertion of the CGM sensor is like sticking a metal McDonalds straw 1/2 an inch into your skin.  I know this information because I have tried both devices on myself before I put them on her for the first time.

4.  Refer to number 3.  Just because Ellie is only 4 does not mean that she “doesn’t know any different”.  Ellie absolutely knows she is different from the other kids around her.  She knows that she will be different for the rest of her life.  She knows that other kids just eat when and what they want without having to tell their mom to inject insulin.  She knows that they don’t have to leave school in the middle of class because of their number.  She knows that they don’t have to have a finger poke before they go running for the playground.  She knows she has diabetes, specifically Type 1 diabetes.  She is not adapting to it without some pain, disappointment, and frustration along the way.  Even I, her mother, have uttered that I was glad that IF she had to develop Type 1 in her lifetime that it was when she was young so she wouldn’t have a “before diabetes”.  I have since realized that I was ignorant and that statement is false.  Ellie suffers the loss of freedom and the pain (emotional and physically) of this chronic disease as if she’s known the difference all along. 

5.  To date there is no one on THIS EARTH that can say what causes Type 1 diabetes.  That statement SHOULD eliminate all THOSE questions.  Genetics you say?  What isn’t genetic?  Isn’t genetics the root of all things living?  Type 1 right now is like The Happening (movie by M. Night Shyamalan), some people develop it and some don’t…genetics or not…there is no known cause. 

6.  I do not have diabetes, my daughter does.  Therefore I will now let her tell you what she wants everyone to know about Type 1 diabetes.

Mom:  What do you want everyone to know about Type 1 diabetes? 

Ellie:  Ummm, I don’t know what to say. (I wait a little and tell her there is no wrong answer) 

Ellie:  I think it’s a big job.

Mom:  What else do you think?

Ellie: I think that it’s very complicated because it’s a big, big responsibility. 

Mom: What else do you think?

Ellie: Diabetes is very complicated because…you gotta change your pod when you have to because the sensor should be changed at 4 days and the pod should be changed at 3 days…

Mom: Anything else?

Ellie: Yes, well…we go low with 2 numbers that’s ok because we can drink juice, or eat or cookies and when you go high then you have to have insulin, right mommy? (I said yes) and when you are right in the middle you can just go on…why are you smiling mommy?  (I said because you are sooooo smart my biggest girl!) 

Mom: One more thing that you might want people to know?

Ellie: Yea, (sigh) Dogs sometimes have it and sometimes cats do too, everyone has it!  

And that my bloggy buddies is the greatest end to a list of thoughts I have ever witnessed!  She is beyond her years I think! 

Happy D Blogging day and I look forward to reading everyones 6 things!!! 

Love to all,

Sara and Ellie Lee


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8 Responses to November 9th D-blog day

  1. Reyna says:

    She is wonderfully smart. My Joe didn’t have such eloquence when I asked him about things he wanted to share…LOL…MEN!!!

    I really liked your #1…so trur…managed yes, controlled never!

    Great list. Thank you for educating and advocating!!! I love you for it and so much more.

  2. Reyna says:

    ahhh…that was supposed to be “true” – I guess I had too much wine – LOL.

  3. shannon says:

    Oh man your list was wonderfully informative but her responses really take the cake! It’s so bittersweet to see or hear them behaving more grown-up than their ages sometimes.

    We go in for our CGM start next week and I’m a bit nervous that the size of the CGM inserter (McDonald’s straw? REALLY?) is gonna be too much for L. *fingers crossed*

    • Oh Oh Oh!!! Ok, yea it is going to hurt if you are getting the Dexcom. But Ellie has less reaction now then she use to. I hate to say out loud that it’s worth it…but it is!? I have no knowledge of the other CGM’s and how they insert. It’s just a big needle to get the sensor wire in. I do it in Ellie’s butt only at this point, but I’ve seen them in arms and I put one on my belly to see what it was going to feel like. It’s like getting a big shot. The pain stops pretty quick…I would definaltely (if your getting Dexcom) let her know that it’s going to be a bit uncomfortable…I bribed Ellie with all sorts of things the first few times. She changes the sensor now with just a little bit of ta-do…a little ritual of sorts that involves a lot of talk and holding hands a certain way, etc. The info is nice (not perfect) but very nice! Get the book called Beyond Fingersticks by William Lee Dubois, it’s a quick read and it helps you get through figuring out what the CGM can really do!

  4. Meri says:

    She IS beyond her years! What a smartie cutie pa tootie! Give her a hug from the D Mama’s in your computer!

  5. Misty says:

    Aw..I always love hearing it straight from the mouths of these sweet babes! So many times they say it better than we do!

  6. Wendy says:

    Love that child. LOVE DOGS AND CATS!!!!! OMGsh…to be 4 again 🙂

    But no 4 year old should have to keep track of how many days between pod and CGM changes.

    Sweet, sweet child.

    We’re doing every thing we can to make it stop. Hang in there…

  7. Meri says:

    Just received your comment. ((HUGS)) My prayers are with your family sweet friend. Please reach out to me if there is anything I can do for you. I’m a great listener, and take a good yelling at if you need the release. ourdiabeticlife (at) yahoo (dot) com

    Much love to you!

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