Twins Always Take Care of Each Other!

Friday, December 20, 2013

The Unexplained

As the parent of a type 1 diabetic, there are so many new things you learn:
-How to count carbs (and make accommodations for fat content)
-How to live on little to no sleep on a regular basis
-How to guess the carb content in the food that doesn't provide you with the carb content (UGH - no matter how many years you do this, it never gets easier in my opinion!)
-How to appreciate health and not take it for granted
-How to negotiate the health care and insurance system
...and so on.

What makes it difficult is the fact that no matter how much you know, no matter how much you "do it right," there are still times when things go wrong.

Let me first say that right now I am choosing to write because I could not be more thankful for a CGM (continuous blood glucose monitor) reading that looks like this:


But I could tell you that everything has been going well and I am an EXPERT and I deserve a big pat on the back. BUT, if I want to give you an honest glimpse into what life is really like in a type 1 diabetic household I have to show you the good and the bad. Well, the bad looks like this:
This is the exact same time on the CGM - just extended out to the 24-hour view. Not so pretty, is it? Fighting a lot of highs - then lows - then highs - then lows.                                                                                                                                           See that crazy nose dive in there around 6am? That one, though was my fault. Here is where I tell you about the "RAGE BOLUS." That is where a type 1 diabetic (or the parent of one) is fighting high after high after high and no matter how much insulin you dump on that high the number just doesn't seem to budge. Like I might as well be dosing water for how much good it was doing. So, with the frustration of continuous highs and the fog of a brain on no sleep I dumped a bit too much insulin and BAM! Well, that blood sugar finally came down alright!

                                                                                                                                                     
                                                                    
                                                                                                                                                                                                                                                                                                                           Now, we have been seeing this roller coaster for a couple of days now. Totally unexplained. And knowing that the problem is not with our insulin pump settings, I had tried other corrections - changing out her pod (insulin pump site). Made slight modifications to snacks to see if there was just a problem with fatty snacks before bedtime (such as ice cream). But nope, we were still seeing these issues. She has had a bit of a sinus issue this week but a minor cold normally will not have an impact like this on her blood sugar numbers. 

So, this morning we changed out her pod - again - this time with a brand new bottle of insulin. That the first picture is the view of what today looked like (since breakfast). So far, so good! I don't want to jinx it because I SWEAR sometimes that really does seem to make a difference! I am really hoping that it was the bottle of insulin because I know I could really use some sleep again sometime soon...and I know my D-girl's fingers could use a break from all of this testing!

Chances are I may not write again before the holidays so if I don't, please have a happy and safe holiday, from our family to yours!

Friday, December 13, 2013

We Have Grown and Gained So Much

A diagnosis of type 1 diabetes is devastating for every family that receives it. It is especially hard, in my humble opinion, when it is your child that is diagnosed. No matter which family member (and keep in mind there are some families that have more than one) is diagnosed with type 1 diabetes, it changes your family dynamic forever.

Meals are no longer simple.
Snacks are no longer simple.
Bedtime and sleeping schedules are no longer simple.
Vacations and vacation planning are no longer simple.
Holidays are no longer simple.
Play dates are no longer simple.
Sleep-overs are no longer simple.
Parties are no longer simple.
Meals eaten out are no longer simple...

And the list goes on and on and on.

And the psychological impact among siblings also becomes more complex.

Certainly the more experience you gain and the technology that is out there (if your insurance is willing to pay for it and if you can afford it) can make life a bit easier and add a layer of normalcy back into your life. But once you hear that diagnosis of T1D, things have changed forever.

Although today I choose to look at the bright side. 
Over the past several years we have met so many AMAZING people.
We have learned so many things.
We have opened our eyes to realize that there are so many others out there just like our family that feel the same way we do every day.
We have started a non-profit organization to bring together local T1D families and offer support and educational/informational services. Check out www.berkst1dconnection.org or www.facebook.com/BerksT1DConnection.
We have been creating a lot of great awareness in our community about type 1 diabetes and it is sure to only get better!

Today my daughter's pod (insulin pump) alarmed at school (which mean it shut down and discontinued giving insulin and required a change to a new pod). And for the first time, she flew solo and changed it by herself! I didn't drive to the school and do it for her! We have always encouraged her to be a part of her diabetes care and that she learn how to care for herself in case of an emergency and she would HAVE to do it on her own. And she takes ownership of it and today she did. I couldn't be more proud of how she handles her daily struggles and challenges. To know her, most people wouldn't even know there was something "special" about her.

While T1D may have thrown us a curve ball, we choose to swing at it every single time. In all fairness and honesty, I can't say that we are knocking it out of the ballpark everyday. That would be too broad of a statement and really, T1D doesn't allow for that kind of perfection. Sometimes we get a great hit, sometimes we strike and yes, sometimes we will have days where we knock that ball right out of the ballpark. But we take it as it comes and we live and we love and we appreciate what we DO have and we try to be thankful for the amazing things that type 1 diabetes has brought into our lives.