THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Thursday, March 24, 2011

It Happened.


And it caught me completely off guard.

I mean...I knew we'd talk about this one day...but I didn't expect to be last night.

The adhesive on Sugar's Dexcom sensor (a.k.a her continuous glucose monitor) was wearing out.  I was looking at it before bed, and trying to decide if it would make it through another night.

Out of the blue she said that it was bothering her...and then she started to cry.

Spring is in full swing here and summer is coming fast.  The long sleeved wardrobe has been packed away, and the drawers are full of bright colors, spring dresses, and short sleeved clothes.  She began wearing Dexcom in December (under long sleeves), and we've found her arm to be the most accurate placement for the sensor.

Can you see where this is going?

"MOMMY...they keep asking what Dexcom is, and I just don't know what to say."
"They were laughing at me."
"It beeped during class and disturbed everyone.  I was so embarrassed."

Oh, my heart ached.

Her tears were so big.

And then it was me who just didn't know what to say.  All I could do was hold her and tell her that we'll figure it out.

We agreed that she'd keep it in until morning so I could double check the basal changes I had been tweaking for the past few nights.

Then we took it out this morning.

And I don't know when we'll be putting it in again.

If technology enhances her life, I'll go to the ends of the earth to make it accessible to her and learn whatever I have to learn to manage it.

But if it becomes a burden....

Then I guess I won't.

P.S.  You can read a heartwarming follow up HERE.
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35 comments:

  1. Oh, sweet Sugar!!!! :( I hate that D often gives our kids unwanted, and sometimes cruel, attention. I just want to wrap my arms around Sugar and hug her!!!

    Have you tried Dex on her upper thigh, which would be covered by shorts, dresses, skirts, etc? We've had good luck with thigh sites. Arms are better, but thighs seem to be fine, too.

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  2. It IS ultimately up to them. You are a good mother for letting her decide when and where.

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  3. Sending love, Wendy. I'm so sorry for Sugar AND for you. ((HUGS))

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  4. My heart is breaking. For her... for you. I think one of the hardest parts of being a D Mama is the helplessness you feel when D reduces your child to tears. Especially because our kids are SO STRONG. When it makes them break... when it affects them so much that they cry big tears, its the worst feeling in the world. Sugar Boy also wears his CGMS on his arm... and now that long sleeves have made their exit I know that he had gotten questions about it. This is one instance where I thankful that he is so young... he is not "wise" enough yet to be embarrased about it. (((((HUGS))))) to you and Sugar.

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  5. Oh Wendy :( I had an "It happened" moment this past week too. Josh asked me if people die from having Diabetes. After I talked to him a bout it I asked him why he had asked that out of the blue. He said "I just needed to know." :( So sad for our kids. So much for them to have to bear. Sugar is so lucky to have you for a mom.

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  6. What a shame. Is it worth asking her teacher to have a class about health and explain that some people need things so they can stay healthy, if your daughter was able and happy to take part it might clear the air.

    Kids can be so mean.

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  7. Oh no! My heart is breaking for he and you....especially since I know exactly (well sort of) what you're going through right now. About 3 weeks ago at dance Charlotte came out seemingly okay, but got very upset in the car on the way home and told me she refuses to have "arm sites" anymore for her pump. We'd jut moved them there due to some skin issues with her "hips" and tummy sites. A little girl innocently (I think) asked her what it was and if she'd had surgery...I'm pretty certain the child was just concerned, but it really embarrased Charlotte :(
    So I've started trying to avoid arm sites for dance day...but that didn't work out this week. I know this is hard and am a little concerned since we'll be starting her Dexcom trial next week. ((((((HUGS)))))) to you and Sugar...I hope we can figure out something that works for them and us.

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  8. Is it sad that I wanna go beat those kids that picked on her?? I know they're young and don't realize what they're really doing, but it shouldn't come down to her not being able to use the best that she can to manage her health. So sorry you guys are going through this.
    I know the readings aren't as accurate, but can she put the sensor in her upper thigh? Or even on her lower back? Maybe give it one last try somewhere else and if it really still bothers her, let her take a break. ((((HUGS)))) to the both of you!!!!

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  9. So hard. Have you seen these arm bands, used to cover omnipods or CGM sensors - http://www.bands4life.net/ - it mat make life a little easier. Best wishes Amanda

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  10. I'm feeling Bernard's plan, I wonder if she got to introduce the system to her classmates if they'd understand better and be more sensitive. If she wanted to of course.
    I know Camden doesn't want a cgm and would probably 'accidentally' lose it if the alarm went off at school... His pump went off once in school and he panicked thinking the teacher would think it was a phone and try to take it away, drawing attention to the 'machinery'. Luckily nothing happened, but he didn't even want his pump after that.

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  11. I think it did help when I read the book I made to Joe's class and they "understood" Dexter better. (((HUGS))) to you and Sugar Wendy! AND...I am with you...if it is bothering her, it isn't worth it right now.

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  12. I'm 21, and have been using the dexcom since last sep. (which was long sleeve weather for me). Since I've started busting out my short sleeves, I've had some interesting comments (not mean, but I've experienced a much more consistent stream of questioning). Just annoying, sometimes. The big thing though has been the site physically bothering me. My sleeves seemed to "support" the sensor, keeping the adhesive stuck and comfy longer. I've also started using my thighs (all over sides and some spots creeping towards the front or back a bit). I sometimes get slightly inaccurate readings in the first 24-36 hrs of the sensor, but never anything horribly incorrect. Best of luck to you and your sweet daughter- wish kids were not so mean :(

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  13. Ohhh poor babe...you are such a good mom for not trying to have all the answers but just being there for her and helping her through it...she will get through it and so will you because are both amazing people. Sending hugs your way.

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  14. First I agree with Sarah I wanna smack those kids.

    Second you my friend are an awesome mom, for allowing it to be her choice, I believe later in life she will remember that and thank you.

    Ok I know its different with girls vs boys, but when the kids asked J he said he was a robot and it gave him superpowers ;)

    I dont know if that helps, but I am thinking of you both. Love you!

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  15. Man I would want to smack those kids for picking on her. Especially if it was Lovebug. Good for you for letting her choose. So far we haven't had any issues with Lovebug wearing it. When people ask her about it she just tells them it's her Dexie and leaves it at that, like it's no big deal. You could always try her behind too. But I agree, no use in pushing it if it is a burden to her. ((Hugs)) to you both!

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  16. I agree with Reyna, it may help to talk to the class. Speaking from "Adult" experience, there will ALWAYS be RUDE, MEAN, AND JUST PLAIN STUPID PEOPLE! I am a 30 year old that has to explain my Pumpsley, and Dexter to people all the time.I had to do an in service so my residents would realize that I was capable of driving safely, and that I wasn't dying.

    I was at the salon and some lady was talking about the tubing she saw poking out of my pocket, and my Deter sensor on my arm. She was literally teasing me! Laughing and mocking me! I finally got so mad, I felt like crying. In the middle of getting my hair done, I turned around in the chair and said "I CAN hear you talking about me. I have T1 Diabetes, and it's an insulin pump for insulin. I can take medicine for my disease, but they haven't found anything for rude and spiteful!"

    Yeah, that was like a three year old comeback, but after 3 girls started clapping, and another one gave me a high 5, I felt good. I've got to the point where I just flaunt it. It does hurt sometimes, but it's more important to be proud of yourself, and that means T1 and all!

    So I say Go LOVEBUG! We think you are awesome!

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  17. Yep. Been there with Maddie. Im sorry, I know how your heart felt at that very moment. :(

    I agree technology is a great thing, but so are insulin pumps alone Maddison says. Wise she is, very wise in her young age.

    We use Maddison's upper arm (cant even see it with short sleeves) and we get the best numbers there....her BUM works good too, even though I know it isnt suggested. Maybe keeping it out of sight would help if you really want to stay with it?

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  18. I don't look forward to this with Isaac...however lately he has been saying "It's Ethan's turn for a site." Ummm...well it doesn't work that way buddy. These are the parts that are truly so tough for me. I do wonder if an educational but fun presentation like Reyna's book idea might help as a "retired" teacher I know that often kids just pick on what they don't understand.
    have a great day.

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  19. Wow - Wendy I was expecting that! Big tears rolling here! I'm so sorry that someone/anyone made her feel bad/sad. I dread the day it happens here. I already tense up when kids ask when Nate is wearing - it is a hard to explain to young children. :(

    You are such a great mom for letting her choose. Big hugs to you and Sugar!

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  20. Aw that is sad, I hate that our kids have to be so tough at such young ages. We don't have any kind of CGM yet, but our girl gets questions about her pump/tubing all the time. She has all kinds of crazy answers, sometimes she just tells them the truth about it, sometimes she tells them "it's nothing" or "its none of your business" and her sister always tells people it's a cell phone, LOL Hugs for you and Sugar from me and Korky

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  21. Oh poor, poor sugar!! That is just heartbreaking.

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  22. Oh, she is just the prettiest thing, Wendy! One of the absolute best things about insulin pumps and CGMs.....they're not set in stone. You can go back and forth between them, depending on what's best for her and what makes her most comfortable. Absolutely nothing wrong with taking a break from Dex! Give her a great big hug from the DOC!

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  23. Oh my I was so sad when I read this.. Please let her know that we are all cheering for her.. It is sad that the kids behaved this way. I am in awe of you being able to let go and let her choose. I know it will be a big adjustment to you too not having dex. Just know we are thinking of you

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  24. You are an awesome mom Wendy! I have a friend here whose daughter was dx at 14ish months old and is now 7 and decided that she needed a break form all devices, pump and CGM. She loves the freedom of the kids not bugging her about her pump and feels brave giving herself shots. She never had the opportunity becuase she has been pumping since she was 2.5. It has been difficult for my friend I can tell, but she just keeps encouraging her girl. I am in awe of you both as you just let go and let them do what they need to for themselves. I hope that I would have as much grace if Bekah decided the same.

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  25. Oh, it hurts, doesn't it? I hate that....

    Sweets asked to NOT put her pump on her arm anymore. So both are on her tush. *sigh*. It IS h body.

    Hugs to you, sweet friend! And hugs to Sugar.

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  26. This breaks my heart but I like Alexis's "superpower" approach. A break is probably a good idea, I know I've taken them a time or two and it does rejuvenate. Heck, I'm 34 years old and when mine beeps during a meeting, I get a little embarrassed and often adults are no better than kids, so I totally get that part. Hugs to both of you!!

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  27. I am sorry. Olivia has had hers poked by one girl but for the most part her whole class has been with her since she was 4 so she doesn't get many questions. She has told people hers works like an ipod and we slip her ipod in her TOOSweet pack. Our little secret. I used to put bandaid brand tough strip h shaped bandaids over her sensor. Then take a sharpie and turn her sensor into a turtle or crazy creature. Kids thought it was cool and forgot about sensor. Hugs and best wishes to you. You are doing the right thing.- Kim

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  28. Our teen also refuses to wear it.... just doesn't like wearing two sites, though she claims it does not hurt at all. To avoid the beeping problem in class, which mortifies her, we put all low alarms on vibrate and put the high alarm up to 280, so basically it would not warn her as much as it should. Dex will still beep if 50, of course, but you want it to! We asked her to glance at the Receiver more often to see where she was. Dex was worn on the tush, so it was completely covered. Basically, she does not like the "extra reminder" Dex gives her; does not like the extra time and effort she feels she has to put into diabetes wearing Dex; she wants to forget about it between checks. See if your DD will wear it on the tush, try modifying the alarms for her and maybe she will be able to adapt. We are still hoping to slap the Dex back on her at some point. Oh, and she hated carrying the extra Receiver; that was a big issue for her. WHEN will Dex integrate? I do applaud you for taking into account your daughter's feelings about wearing Dex; it's her body. Hoping you can convince her to try the tush..

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  29. I'm so sorry...it is heart breaking to see them struggle with all of the d-crap. Bless her cute little heart! That is how I feel about the CGM...if she isn't ready for it then I'm not pushing it, because she is the one who has to deal with it.

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  30. Oh gosh-don't you hate it when other kids mess with their health? It's tough. My daughter won't wear her pump on her arm for the same reason. We don't have a CGM, so I can't imagine having it, getting used to it, then NOT. I'm so sorry.

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  31. oh, ive read your last post first. this is just heart breaking... :( kids definately dont want to be perceived to be different. she sure is beautiful!

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  32. I'm really late reading this, but my heart aches for Sugar that she was feeling so sad. I'm glad that I can read this now, AFTER I read about you visiting her class and teaching them all about Dex. Ally has these same emotions and I hate it too! She tells me that she is so tired of them asking if her pump is a cell phone. Doesn't seem like a big deal to us...just tell 'em it's your pump! But to her it is EVERYTHING! Hugs to Sugar!!

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  33. Oh, my heart, too, is breaking. I know this is an older post, but I'm just now reading it--I love your blog! I know how it is to hate what your child has to go through and want to take away all the tears.

    Hugs to you and Sugar~

    Marcie
    :)

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.