Thank You!

Diabetes Blog Week

Last one: As we wrap up another Diabetes Blog Week, let's share a few of our favorite things from the week. This can be anything from a #DBlogWeek post you loved, a fantastic new-to-you blog you found, a picture someone included in a post that spoke to you, or a comment left on your blog that made you smile.  Anything you liked is worth sharing! 

One highlight of D Blog Week for me was getting comments on my posts.

I love writing a post or two every week.  It's a good way to put the whole experience of caring for my daughter's diabetes in perspective for myself.  It helps me think through the particular issues we face, and to process emotions about them.  That's enough, and for just that I'd keep writing.

But I always hope someone is reading.  I hope someone is finding something to identify with, or something that will help.  Maybe my story will make someone laugh or, if needed, cry.  Maybe it will make a couple of people realize they're not alone.

I get scattered comments here and there, but the feedback this past week has been great. To all of you who commented on my, or anyone else's blog, thanks.  It's fun to know you're reading and thinking, and that you enjoyed the words you read!

While D Blog Week has been a particularly busy one for me,  I promise to return the favor slowly but surely over the next couple of weeks!

Saturday Snapshot

Diabetes Blog Week

We're in the process of cleaning out a house my grandparents had built in 1956.  My parents moved there in 1990.  My daughter was born in 2001 and diagnosed with diabetes in 2002.  We've all spent plenty of time in this family home.

This lancet was at the bottom of a hall closet, under a variety of other items, surrounded by a few years of dust.

Diabetes is as much a part of our family's historical fabric as my grandfather's tool box, which was next to it on the floor of this closet.

Want to see more picture-based posts for diabetes blog week?  Click here for the link list!

Sippy Cups

Diabetes Blog Week

Today's Diabetes Blog Week topic:  Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes.  Want more tips?  Click here!

Despite our attempts to keep it on the QT, most of my daughter's friends know that despite being 12 years old she sometimes drinks out of a sippy cup:

The lids are long gone, replaced by fun straws.  The spill-proof aspect is no longer (usually) the important part.  We keep them around for the numbers down the side.  They allow us to measure how many ounces of juice she is drinking when she is low.

On the go and at school, it's Elmo or Clifford juice boxes all the way.  But my daughter really likes orange juice, so when she's low at home, that's her preference.  Enter the sippy cup.  We can measure varying amounts based on her blood sugar number right into the cup she'll drink it from.

It's strange to still have sippy cups around, and will be stranger still when she takes them to college with her, but measuring juice quickly and accurately is great when we're in hurry to bring that blood sugar up.

A Note From Dexi

Diabetes Blog Week

Today's post is for the 'tell me a story' wildcard category for diabetes blog week. Write a short story personifying a diabetes tool you use on a daily basis.  A meter, syringe, pump, pill, etc.  Give it a personality and a name and let it speak through you.  What would it be happy about, upset about, mad about?  More stories from your favorite diabetes tools can be found here!

Hello There!

My name is Dexi.  I'm a 'continuous glucose monitoring system.'  Sounds boring, but I'm really terrific!

I'm a big help around here.  I keep track of the girl's blood sugar all the time and map it out on a graph for the people to look at.  They can ask me for a number anytime and I gladly share what I know.  If the numbers aren't so good - like they're too high or too low, I vibrate and sometimes I even beep.  This, they tell me, helps keep the girl safe and healthy.  I'm very important.

At first the people were really interested in every little thing I told them.  They pushed my buttons all the time, and exclaimed about my usefulness and said things like, 'what did we do before we got this?'

Now I don't get as much attention as I used to.  Sometimes, like after we've gone out to dinner, or if the girl is sleeping in a different bed, I get looked at a lot.  Usually, though, I get left in a bag or on the table for most of the day and night.  It's boring and I don't like it.

So, well...can you keep a secret? can't tell them, o.k.?

O.k.?  O.k.

Here's the thing.  The other night I did something just to get attention.

It had been a few nights since anyone had paid any attention to me at all once it was dark out.  It's really boring sitting on that bedside table all night by myself, keeping track of boring numbers. My alarmer was getting out of practice.  So I alarmed.

"LOW!"  "Under 70!"  "Bzzt.  Bzzt."  And guess what?  It worked!  The lady reached over and picked me up.  She carried me in to where the girl sleeps.  I got to see all the stuffed animals!  She used that thing she thinks is more reliable than I am.  "Never give insulin without using the meter first,' she always reminds the girl.

"132?"  She whispered it since the girl was sleeping but she whispered it mean-like and I think she glared at me.  She used the meter thing again.  "Yup.  134. Uggh..."  Then she pressed my buttons some more and I was supposed to agree that 133 was obviously the number the girl's blood sugar was.

"71," I replied.  Did she think I was going to admit what I'd done?  Then what might happen to me?  I'd get even less attention.  I eventually let myself creep up to the right number again, but not so quickly that they'd be on to me.

Usually I'm very good.  Really.  Sometimes the meter and I have exactly the same number.  You should see how happy they are then.  But if they start ignoring me again...well... I might have to take action.

What Brings Me Down

Diabetes Blog Week

Today's topic: May is Mental Health Month, so now seems like a great time to explore the emotional side of living with, or caring for, someone with diabetes.  What things can make dealing with diabetes an emotional issue for you and/or your loved one, and how do you cope?  More  posts on this topic can be found here!

What brings me down as a parent of a child with diabetes is when the disease impacts what my child can and cannot do.  With her cell phone, insulin pump, Dexcom and growing self-awareness, my daughter is now able to do most things other kids her age do.  But not always.

A couple of weeks ago, I wrote about having to say 'no' to an overnight birthday celebration at a friend's vacation home two hours away.  If you'd like to read the whole story, it's here.

Looking back on the post, it tells the story from start to finish.  It explains the logic of our decision and touches on the difficulty of making it.  Yet the emotions are not adequately conveyed.  I mentioned tears, but the whole thing was a real downer.

Reading the invitation?  Deflating.  Anxiety-producing.  Disappointing.  Saddening.

My daughter's reaction?  Like the stages of grief.  They were all there, though not necessarily in order:   denial, anger, bargaining, depression and acceptance.   Fortunately she moved through the whole thing in under an hour, but she was and still is deeply disappointed she can't be there.

How do we deal with it?  With this situation and others like it, we tend to combine two tactics to face the curve balls diabetes sends us.

One, I suppose, comes from our stoic New England and Pennsylvania Dutch roots. With this party invitation, as with other situations in the past, we didn't dwell on it. We had a little cry over the whole thing and unleashed a healthy tirade over diabetes' awfulness.  Then we had lunch.  What else was there to do?

The second is the fun part.  It's the 'when life gives you lemons, make lemonade' idea.  No, she can't go to the party, but we did arrange a fun sleepover at our house for the same night, and there's likely some mini-golf on tap for the weekend as well.  Is it as good as the original opportunity?  No.  But fun will be had, gosh-darnit.

Diabetes can be awful, painful, isolating and depressing.  It takes conscious effort every day to keep it from taking over our household.  Some days it takes everything we've got.

A Limerick

Diabetes Blog Week

There once was a girl with a meter.
They said diabetes would beat her.
She rose very tall
And said with some gall,
Fall?  I won't even teeter.

In The Grand Scheme of Things

Diabetes Blog Week

Welcome to Diabetes Blog Week 2014!  Today's topic is 'Change the World.' Let's kick off Diabetes Blog WEek by talking about the diabetes causes and issues that really get us fired up.

I've gotten involved in a variety of diabetes-related causes and issues over the years.  I've signed all kinds of petitions, written letters, shared concerns on facebook and twitter.  Our family participates in at least JDRF fundraiser 'for a cure' each year including occasionally volunteering at these events.  We have donated both money and supplies to other diabetes charities. Given the opportunity, I'll do whatever it takes to convince a parent of the importance of a 504 plan in conjunction with a good relationship with the administration and staff at school. At different times I feel 'fired up' about different issues.  But they all pale in comparison to what children with fewer resources than mine go through to live with diabetes.  

We have a plastic drawer full of fairly accurate test strips.  We wish they were more accuarate.

My daughter has an insulin pump, a continuous glucose monitoring system, several glucometers and a ketone meter.  We wish they'd all work together as an artificial pancreas.

We have insulin in our refrigerator and if we run low, a pharmacy a mile away from our house.  We're annoyed when we forget to call in the refill.

We drive to the endocrinologist's office three or four times per year where we receive excellent care from both the doctor and a full team of diabetes specialists.  The rush hour traffic on the drive home is frustrating.

We sometimes have to push for better understanding or communication from school, but my daughter is safe and happy there with a full-time school nurse and informed staff.

These day-to-day challanges of diabetes are real, but pale in comparison to what too many other children with diabetes live with each day.  Insulin For Life is an organization which provides diabetes supplies and care to children who otherwise would have none. None. Not strips which don't work as well as we'd like them to.  Not insulin they ran out of so they have to make a 6 a.m. run to CVS.  Not electronics they'd really like to replace with the newest model or the pink version.  Not doctors whose waiting rooms could really use free Wifi. None.  If there's a cause to rally around, basic care for children who have none at all seems to me the most important.

Could our lives with diabetes be better?  Always.  But in the grand scheme of things, we really, really can't complain.