D-Blog Week - Share and Don't Share

Share and Don't Share

Grace and I share mostly everything with Grace's endo. Our endo is a breath of fresh air in an otherwise heady jungle of numbers and basals and boluses. She strides into the exam room and immediately starts chatting with Grace about her outfit, her hair, school, camp, her best friends, everything under the sun. And it's TRUE. She cares so much about Grace and her kids in her practice. She truly wants to know how they are doing. And the best part? She doesn't ever ask how the diabetes is going until she has about 10 minutes of dialogue under her belt. See, makes you want to hug her, right?! I do, a lot.

After we get down to business of looking at the logbook (yes, I still log every BG, every bolus, every temp basal and every little thing I do in this D business. It's what works for me to figure it all out) and looking at her pump and her Dex. She asks me how she can help me. Let me tell you again - she asks me how she can help me. The first time she said it, I started yammering on and on about how I couldn't get the lows fixed after the high, you know, the rollercoaster effect. She said 'Let me help you with that' and proceeded to teach me some invaluable tricks of the trade. Up until that point, no one had ever asked how they could help me. Once you ask, I am all for getting help. She's that kind of gal, she asks.

I there something I don't share, that I hope Grace's endo sees nonetheless. Well, I hope she sees how hard we try, day in and day out, to do the dance with the D. I think she does, and maybe next time, when she asks me how she can help me, I might just say... 'You know, one of the ways you can help me is to see how hard we work at this. That it's not easy, not for a minute, so I hope you always know that we come in here every three months having tried our hardest.'

I think when she hears that, she might be the one giving me a hug.

Diabetes Blog Week is up and coming!

Yeah! Diabetes Blog Week!
I will be participating. Head on over to Karen Graffeo's blog, Bitter Sweet, to sign up.

See you starting Monday!






Here are the topics for the week:


Share and Don’t Share - Monday 5/13
Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?  (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

We, The Undersigned - Tuesday 5/14
Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change? (Thanks to Briley of inDpendence for this topic suggestion.)

Memories - Wednesday 5/15
Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. (Thanks to Jasmine of Silver-Lined for this topic suggestion.)

Accomplishments Big and Small -Thursday 5/16
We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.). (Thanks to Hilary of Rainie and Me for this topic suggestion.)

Freaky Friday - Friday 5/17
Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? (Thanks to Jane of Jane K. Dickinson, RN, PhD, CDE and Bob of T Minus Two for this topic suggestion.)

Diabetes Art - Saturday 5/18
This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!

 Spread the Love - Sunday 5/19
As another Diabetes Blog Week draws to a close, let’s reflect on some of the great bloggers we’ve found this week. Give some love to three blog posts you’ve read and loved during Diabetes Blog Week, and tell us why they’re worth reading. Or share three blogs you’ve found this week that are new to you. (Thanks to Pearlsa of A Girl's Reflections for inspiring this topic.)

Dream Diabetes Device Wildcard
Back by popular demand, let's revisit this prompt from last year! Tell us what your fantasy diabetes device would be? Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc. The sky is the limit – what would you love to see?

Diabetes Wild Kingdom Wildcard
What is the ideal diabetes service animal? Think beyond the obvious and be creative in explaining why your choice is a good one. For example, maybe a seal would make a good service animal - it flaps its flippers and barks every time you get a good blood sugar reading! (Thanks to Tristan of Based on a True Story for this topic suggestion.)

The Sugars

It's been three years that Grace has been on the OmniPod insulin pump. Three years of it and we haven't looked back.

I love you sincerely, Insulet, but if you don't get your you-know-what together soon and get us the NEW PDM and NEW Pods that everyone who 'cut the cord' get, you are gonna deal with one angry D-Mama. Don't say I didn't warn you.

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Grace had her annual eye check up today with dear old Dr. Nelson. I love the guy and we have been seeing him annually for four years. He's one of the best in the whole city for pediatric ophthalmology. One of the very best. But, he's old school.

Our conversation went something like this:

'Hi Grace, how are you doing? Are your sugars under control? How are your sugars?'

'OK I guess. Yes. They are under control.'

Dear Dr. Nelson proceeds with the whole exam. Smiling and looking into her eyes the whole time. He is kind. And smart. And good.

My mother always told me to look for the people in your life with kind eyes.
Dr. Nelson has kind eyes.

'Grace, your eyes look great. No diabetic damage, your retinas look wonderful. Keep those sugars under control now, you hear me!'

I smile at him. I don't have the heart or the nerve or the wherewithal to correct him or even change what he is saying. He is saying it because he cares about her. He is saying it the way he knows how. He is doing the best he can.

'Thanks Dr. Nelson, see you in a year.'

'Great seeing you Grace, remember about the sugars!'

Waiting on Insulet and the new OmniPod

Grace has been using the OmniPod pump for three years this April. Three years. Three years ago do you know what I heard - that smaller Pods and a new PDM were on their way. As in, a few months until they cleared the FDA and they would be in our hands.

Grace was even in the clinical trials for children with Type 1, on the new PDM. I held the new Pod in my hands, played with the PDM, was trained on it by a CDE OmniPod representative from Texas who was flown to Philadelphia to help conduct the FDA trials. That was TWO YEARS AGO.

And what pisses me off even more is that the NEW customers to Insulet - the ones who have 'cut the cord' are the first ones to get the new system and Pods. We have been more than loyal, outspoken advocates of Insulet and OmniPod for three years.

You know when I may get the new system for Grace? Good question. Insulet can not tell me. As in, when I call, they have no idea when I will be given the new system. No timeline. No date in the future. Nothing. Hmmmm. I'm not a business person, but something stinks about this.

My good friend Lorraine Sisto, who's son Caleb is also Type 1, and who blogs at This is Caleb, wrote a piece stating her feeling about it all.

Head on over there and read what she has to say.
She's been waiting SIX years for this.
Go ahead, ask her when she is getting her new system for Caleb.
Go ahead, ask.

http://thisiscaleb.com/2013/03/31/six-years-of-waiting-omnipod/

Not wanting to

'I don't want to. I just don't WANT TO.'

Those were the words that Grace said to me when I mentioned that it was Pod change time. She was about to 'expire' in a few hours, and I didn't want to do a middle of the night Pod change.

'I understand, you don't want to. But we have to. It's already started. I deactivated the other Pod, so it has to come off and a new one on.'

'I DON'T want to. I just don't want to do it.'

And instead of me stating again why she has to do it, why she must do it, why it isn't negotiable and why it doesn't matter, in the end, that she doesn't want to, but she just has to... I hug her.

I hug her hard and whisper in her ear.

'I hear you honey. I hear you. You don't want to do this anymore.'

And she cries and says 'Yeah.'

I try and say all the right things - I try to understand what it must be like to do this every three days, to wait for the 'shunk' of the cannula into the skin, to have this damn Pod hanging off me every bloody second of every day, to bolus for every thing she eats, for all the finger pricks and the blood and well, all of it.

I can try to understand, but I don't REALLY understand.

But I do understand that it must be hard. I have done some very hard things in my life for a very long time and I do understand the feeling of things being so hard that you don't know how you are gonna get up and do it one more damn day. That I do understand, in spades.

I tell her our mantra, that we don't have to like it, but we just have to do it. And I will be there to hold her hand, help her through it, and move on, so we can do the great things in life.

I tell her that.
And I also tell her that I understand hard.

Blue hair, baby!

Grace has wanted blue ends of her hair, well, forever. OK, maybe not forever like we know it, but foreeeeeeeeeever in her 10 year old mind. Which is like 110 years to you and me.

I said yes, and frankly, without a moment's hesitation. It's her hair and frankly, it's only hair. Hair grows. Hair can be cut at any moment. It's a color, that's all.

Last night was the night. She had to go blonde on the tips before she got dyed blue.

And she loved every minute of it.

I present to you, in the spirit of the blue circle, Grace goes blue.

Relying on Dex

Whoa... I have not posted in HOW long? Wowsa. Well, life keeps you busy, is all I will use as an excuse.

Dexom, how we love thee. There have been less sleepless nights thanks to you. Less finger pricking. Less having that low settle in for a good long spell. Less highs that last and last and last, cause we can ward it off with you, Dex.

One thing is, which I really hate to say is, Grace relies on it a little too much I think. Yes, I know it's a pain in the you-know-what to test when Dex is screaming 70 with a down arrow. I am completely aware of the others who may look at someone who is about to prick their finger and draw blood, though I am not the one they are staring at. I fully realize the complications that arise when peer after peer asks you 'What is that?' 'What are you doing?' 'OMG, you are really bleeding!' It sucks.

Seeing Dexcom read an 82 with a slightly southeast arrow, fearing you are heading towards a low, is call for a granola bar, no?! In her mind it is. And it results in a 234 BG merely two hours later. Cause I don't think she really was 82, I think she had just eaten, and Dexom was a little off. I think she was in the low 100s. Then add in an un-dosed-for 17g granola bar, and BAM, you got yourself a 234 BG.

Problem is, this isn't the first time she has done this. It's been about 3 times now in the last few months, the fear that Dex rings in at 80, the worry about a low, the treatment and then, the rebound high. I get it, the worry about the low. I get it, the trust in Dex and not the testing. And still I converse with her about a different way of approaching it. Might you test, honey? What do you think about testing, sweetie?

I absorb my daughter's eye roll as I suggest that she might think about testing next time this situation arises - the Dexcom ringing in with a 'supposed low' but no other earthly reason for a low, and the need to confirm or deny it's existence with a finger prick.

The eye roll says the treatment of the granola bar was just fine Mom. I saw where I was headed and I stopped it. So what I got a 234. I adjusted.

And I have to remember that my gal is learning, she is doing it herself and it's hers, not mine.
And that she did just fine.