Monday, April 27, 2015

Demystifying the Quarterly Clinic Visit

Quarterly visits tend to be full with various meet and greets, exams and open dialogue.  Often, I refer to them as "ours", as much of the conversation continues to flow with me deeply entrenched.  Although, as the girls have gotten older, many of the questions have shifted from me directly to them.   Oldest daughter has most all of her answers at the tip of her tongue while youngest daughter still pauses and looks to me for confirmation.  It isn't that she doesn't know what to say, it is that she is still adjusting to talking directly to adults.

For this appointment, the questions were very simple and our biggest take-away was a reminder to make sure that the girls are wearing ID bracelets (or necklaces, etc.).  For the summer, I completely agree that it is a must, especially as the girls are in and out of the water for hours at a time.  We are adding that to our to-do list and hopefully, will be making that a much needed habit.

A few small adjustments to both girls basal and bolus ratios were needed this time.  Oddly, after years of insulin increases, oldest daughter has been contending with many more lows during the past three months.  While she is away from home much of the week, I was nervous about her handling them, even with Dexcom Share, so I over-compensated on her basal rates.  Between the Endo, oldest daughter and myself, we made a joint decision in adjusting a tiny bit back, for a happy medium.  As of Friday's appointment, we have had to do one juice box shortly after bed, so I am not fully sure if that change will stay.  However, part of what "we" do, is to make adjustments based on the evidence that we have on hand with oldest daughter's blood sugar logs.  With teenagers, it is fully expected that there will, at times, be evidence not accurately represented with her daily bgs.  Not to say that oldest daughter has done anything wrong, but undeniably, her body is still in hormonal limbo.  Figuring it out is much akin to shooting arrows in the dark.  Conversely, youngest daughter is now at the age where I joke that she must be drinking the insulin because there is never quite enough in her little body... hormones, hormones, hormones, they are EVERYWHERE!  We do the best that we can and keep adjusting as we go.

Other than that, there really wasn't anything to share.  We made our appointments for mid-summer and knowing how much our youngest is growing, also discussed the next set of blood draws to gage the effect on her thyroid.  That might be just as important as managing the ups and downs of blood sugars during this period of growth.

In an effort to keep it real, I am sharing our latest A1c numbers.  I do this in attempt to demystify the A1c and perhaps, to slightly devalue the overall concept that one number defines success or failure during a three-month window.  Truly, there should be no shame or blame when it comes to a clinic visit and for whatever reason, it seems that much of those feelings revolve around this one number, which is utterly silly.  Remember, you are SO MUCH MORE THAN THAT!

Without further ado...

Oldest daughter = 7.5
Youngest daughter = 7.9

For pics of what the A1c looks like within our clinic home, you can view me on Twitter @natsweetsisters or by clicking on this link:

If you have anything to add or share about clinic visits or your A1c, please feel free to comment below or to send me a message.  I am still gathering information on #C3N and #Teent1d to help revamp the processes for our A1c visits and would love to hear from you!

Tuesday, April 21, 2015

JDRF TypeOne Nation Summit: April 29, 2015 WDIV TV Appearance with Dr. Whitehouse and a Naturally Sweet Sisters Mom

Dr. Fred W. Whitehouse

Excited to share that I will be helping JDRF Michigan East Chapter and the talented Dr. Fred W. Whitehouse with promoting the 8th Annual JDRF TypeOne Nation Summit on Wednesday, April 29th on WDIV, Detroit, with a live television interview around 11:00 a.m., EST.  

If you do not know Dr. Whitehouse, I wanted to share a fantastic overview of this true T1D pioneer.
It is easy to forget the leaps and bounds we, as a society, have made in improving T1D care since the invention of insulin in 1922.  Dr. Whitehouse has lived through each of modern advancements and continues to advocate for patients around the world.  Dr. Whitehouse knows, despite the current improvements, we are not done until there is a cure for T1D.

Rather than re-writing history, I am including a link to an exceptional article written by Mike Hoskins, Diabetes Mine. 

We hope you can view the broadcast, but even more, we hope that you will be at the Summit on May 9th, 2015!  Be sure to register today!


For more on the JDRF TypeOne NationSummit 

(and if you are possibly worried about the drive, yes, it is totally worth it!)  

Registration Details...:
If you haven't registered for this FREE event, you can do so online at…/registration-open-for-jdrf-…/

TypeOne Nation Summit Program Details...
There are special events for ages 12-19 at our JDRF Teen Central as well as for kids ages 5-12 at our Kid's Camp. 
A continental breakfast and light lunch are provided - at no cost - as well as cutting edge information on treatments, better care and research.
I'm more than happy to help answer questions regarding the Summit, Kid's Camp and Teen Central - so feel free to send them my way. Thanks to the hardwork and ongoing planning efforts and talent of Senior Outreach Manager, Denise Pentescu and Michele De La Iglesia and all of the JDRF SE Michigan staff, especially Executive Director Kate Cahill Durak, and along with the multitudes of volunteers including the doctors, nurses and vendors on the Planning Committee, this has been the largest conference in the US. JDRF SE Michigan is making an impact in the lives of people living with T1d around the world!!

When you support JDRF, you are supporting the goal of improving lives on the way to a cure for type 1 Diabetes. Thank you from our family and everyone else out there! We appreciate it! heart emoticon

Wednesday, April 15, 2015

VIDEO ALERT!!!! Naturally Sweet Sisters: Medtronic 530G and Animas Ping Infusion Site Change for #dayofdiabetes

Last night, or was it this morning, I posted at midnight.

Here we are, just a bit before midnight yet again.

I haven't slept more than 5 hours and well, that is just what it is.  Really, this is the easy part.

Before the #dayofdiabetes ended, our very own Naturally Sweet Sisters came up with an idea of creating a simple (under 30 seconds) video to share an infusion set change.

It is disarmingly simple.

And charming.

Especially the proud grins at the end.

However, the smiles mask the obvious chronic health situation that we are in.

Those infusion set changes occur every 2-3 days, marking 150-180 days of their lives.

This doesn't include the other sharp needle poke from weekly to bi-weekly CGM sites, adding around 50 more jabs.

Nor does the video display the tremendous amount of finger sticks that my sweet girls endure throughout the day, totaling around 3,285 stainless steel lancet pricks in year.

Diabetes is painful

Most of all, unless you or someone living with you is attempting to manage those thousands of pokes, it is easy to forget.

Especially when they make it look like it is no big deal.

Remember, it is not.

We need a cure.

#dayofdiabetes #natsweetsisters  #curet1d

Midnight #dayofdiabetes

My day typically starts at midnight.

Wait, scratch that.  My day continues at midnight because I have yet to take a break from the previous day for sleep. 

Sometimes sleep comes early and sometimes it barely appears until the wee hours of the morning when another competent adult can take over.  

I don't dwell on the lack of sleep like I used to.  I have accepted the way things are.  It's been almost a decade now.  That's too long not to feel an acceptance of some kind.  With so many years of T1d care, the slippery slope towards adulthood seems to loom a bit closer with each passing season.  One day my girls will be off to college and well, no matter how messed up my sleep pattern is now, at least having the girls just a room away is better than miles or even hours away on a remote campus. 

Until this arrived a few months ago    

Here's my 'follower app' view using the Dexcom Share on my iPhone with a recovery notice at 11:05 p.m. from a lower blood sugar at 90mg/dl.  The number was so low that I didn't stop to take a picture until it after the danger had passed.  Currently, our youngest is sleeping with zero insulin entering her body.  I'm awake until it is safe to resume.

Conversely, that 210 mg/dl has been fairly consistent since dinner which is an indicator that if it happens again tomorrow night (because it happened the night before too!) that it might be working itself into a pattern that will require a boost of insulin prior to mealtime.  Of course, dinner tonight kind of mucks that thought up because we ate pizza.

There is nothing typical about a pizza dinner at our house.  The proof is in the picture.

And now, as I am wrapping up on this blog post, you can see the most recent screen shot of the Dexcom Share. With insulin delivery suspended for about 45 minutes (and with listening to  a multitude of reminder beeps to resume) I was finally able to quietly creep into our youngest daughter's bedroom and start her insulin drip.

At the same time, I also opted to give an additional unit of insulin to our oldest as her numbers barely budged.

Before you feel too much sympathy for me, please know that two special moments also occurred.

The first happened as I was initially 'catching' the low blood sugar.  Before I entered the bedroom, my oldest daughter was attending to her sister with a juice box in hand.  Hearing the noise, she instinctively got up to make sure her sister was alright.  Without a doubt, my girls are close.  Tender is the word that would describe tonight and quite often, is the way that they interact over T1d.  I am grateful for the connection that they share.

Later as I reached in to gently re-start the insulin delivery on my youngest daughter's pump, she reached out with her eyes closed to hug me and hold my arm.  I nuzzled her neck and hugged her back and for just a second, she was back to being a little baby in mama's arms, not an independent tween.  Those stolen moments come mostly when it is late like tonight.  I feel lucky to catch them and I am not sure I would even have the opportunity with out the circumstance of T1d.

#dayofdiabetes @natsweetsisters

Tuesday, April 14, 2015

4-5-15 Tweet, Blog, Shout #dayofdiabetes

I love the DOC.

This is exactly the kick in the pants that I needed to hop back on the Naturally Sweet Sisters keyboard:  #dayofdiabetes .

Thanks and the rest of the DOC for sharing an opportunity to spotlight the million reasons of why #curet1d is needed!

Until 4-5-15 tweet, blog and shout,  #dayofdiabetes  @natsweetsisters and

Sunday, April 5, 2015

Happy Easter!

Happy Easter from the Naturally Sweet Sisters!  

May your day be full of peace, love, joy and a hefty sprinkle of chocolate.  

And with a little luck, may all of us enjoy a day of in-range blood sugars.  

Happy Easter!