Twins Always Take Care of Each Other!

Thursday, February 28, 2013

I Wish Diabetes Never...

In looking back over some photos I had taken, I came across this photo I took not so long ago. It was a spontaneous message written by my sweet little D-girl and I happened to catch the unfinished thought and snapped a picture because this picture really is worth a thousand words... and so much more!


Now, please, of course, forgive misspellings. She is only learning to write and spell words and put sentences together on her own. But for her to have put a sentence like this together - unprompted - speaks to the soul of every person out there living with T1D. 


We test blood sugar levels - many times a day
We correct blood sugar levels - high and low - many times a day
We count carbs - ALL OF THEM - all day, every day.
We are thankful for the technology we currently have to treat T1D 
We are anxious for better technology to make life even better!
We change CGM (continuous blood glucose monitor) sites - once a week
We change insulin pump sites - every two to three days (less if there is a problem with the site).
We order and organize our diabetes supplies - yep, it fills an entire shelf!
We spend many sleepless nights trying to regulate BG levels. 
We have also spent sleepless nights worrying about the unthinkable.
We carry a bag of supplies everywhere we go - everywhere!

...and you know what? This list barely scratches the surface of what it is like to live with T1D.

It is a lot for a 7-year-old. 
It was a lot for a 3-year-old but at that time I think it was a little easier to deal with for her. Because I truly believe it was easier because she didn't know any different and she believed us when we told her everything was OK. Now that she is 7 and can make some of those judgments for herself, she is most certainly realizing that she drew the short straw and that is heart-breaking for any parent. That being said, she is the strongest, bravest, and most positive person I think I have ever met. I admire her spirit and her determination to live her life to the fullest regardless of diabetes. She is amazing and I am proud of her. 

So, perhaps, to have a moment of reflection and wish that diabetes was never... I get it. I wish it never too. But she keeps on keepin' on and I will too because that is what we do. HOPE.


Wednesday, February 27, 2013

Pretty Things

It might seem silly to some, but sometimes you just need pretty things to brighten your spirits. 

Disclaimer: I am going to mention a few products in this blog entry. I do not work for these companies nor have I been contacted by these companies to endorse these products. Just sharing with y'all what we find we like to use :-)

There is no way around it. When you have T1D, you have a lot of STUFF. Meters, lancets, test strips, glucose tablets/gel/powder/candy (take your pick), syringes, insulin, pump supplies, hand sanitizer, anti-bacterial wipes, maybe a small protein snack... and the list goes on! 

Who says you can't be fashionable and functional? Especially for the little girls in our lives with T1D. 

This is our new insulin supply bag! Arrived today! It is a "31" organista bag. 

We are love, love, loving it! Cute, small and has plenty of compartments for all of the "STUFF!"

We were even able to get her initials monogrammed in hot pink letters on the front! NICE! 

Hey, when you are the mom of a little girl with T1D, you do what you can to make her feel special! Don't judge... you would do the same for your little girl :-) 



On to the next!

Now, first let me say - these bracelets are BEAUTIES... although getting all three in a picture without the colors clashing was proving a problem. So, trust me - they are simply beautiful!

We have one for all-seasons - that is the one at the bottom with her medical tag attached. 

One for Halloween. And, of course, you need one for Christmas! 

You can find these lovelies and MANY, MANY more at www.laurenshope.com! 

Now, the best part of this company is that you can order the medical bracelets as regular bracelets as well. Since we have twins, we were able to order the matching bracelets for both girls! One with a medical tag and one without! I LOVE IT! No one feels left out and they both have some pretty jewelry to wear... now what girl isn't going to love that?

In all seriousness, it has always been important to me to include her twin sister in her diabetes care. We are a family unit and we face this together. The bracelets are, in my opinion, a symbol of solidarity. A symbol of inclusion. And do you know what? I think we are in a good place. I think it is working out nicely for us. If you take a look at the picture at the top of the blog you can see that the girls are very close. 

And I will do my best to keep it that way. 
Thanks for reading! And remember, whether you have a girl or a boy with T1D... or even if you are an adult living with T1D, there is nothing wrong (in my opinion) with treating yourself to something special - whatever that means to you - because you certainly deserve it!!

Tuesday, February 26, 2013

Pretty Fantastic Day

Pretty Fantastic Day...Indeed!

Well, today has been a pretty exciting day for us!
An article was published in the local paper promoting a support group we started for Type 1 Diabetes. 

I had been talking about the need for this group for quite some time with my friends and while heading out to dinner with some very dear friends a couple of months back, a friend said to me, "you really need to make this happen." And you know sometimes you just need that mental head slap. You just need someone to say the words to wake you up to what has been staring you in the face for way too long and you just don't realize it. And it clicked! YES! It was time! 

Our Meg has been living with T1D for 4 years now and we feel pretty comfortable with where we are and our ability to deal with her illness. As comfortable as you can be. BUT, I need the interaction and I know there are others out there that need it too! I talk about it with everyone that will listen - so watch out if you end up next to me in line at the grocery store! There's got to be more people out there that also need this, right? So that is what we needed to do - start a support group! Build a network of T1D families here in our local community to share in the experience and lean on for support and advice. 

Since the story ran, we have added several new members to our local online support network and several people have personally reached out and expressed interest in the group!

It is ridiculously exciting to spend time with people who "get it!"



Monday, February 25, 2013

A Basket Full of Broken Hearts

This is our basket full of broken hearts. 

One year's worth. 
One year's worth of tears and fear and tension and anxiety.

The CGM (continuous blood glucose monitor) sensor collection.

We love you CGM. You give us such comfort in knowing our little T1D girl is safe because you are watching over her. 

BUT...apparently those little suckers hurt for her when they are applied. And it creates a good amount of tension around her on "sensor-changing-day." 

Bad enough that it has to be done but imagine having to be the person that continuously has to be the source of this pain for your child. Yeah, I know, I shouldn't heap that on myself. Diabetes is the source of the pain. But, I am the person that, sensor after sensor has to look into her tear-filled eyes and convince her to let me do it. She knows it is in her best interest but it doesn't make it any easier on "sensor-changing-day." 

But here we are one year later. Better for what we have accomplished and corrected in that year with all of this great data we have collected and we have hit an exciting milestone! 

After an entire year of sensor sites on the belly, we have graduated to our first site on the back of the arm!

And it came with it's fair share of anxiety and tears but we made it and guess what? We are kinda liking it! 

Sometimes you just have to leap, ya know?

Sunday, February 24, 2013

Oh, the little things...

Oh how we worry about the little things. They seem so simple, don't they? And little. Perhaps to others. But to a T1D parent they are the little things that we dwell on and worry about on a regular basis. 

I am not referring to BG levels. Those worries fall into their own special category and we can talk about those another time! 

These are all of the things that add up to that special brand of crazy that only a T1D parent can appreciate. (and I say that loosely, as there are I am sure other serious and long-term diseases that parents must deal with that come with their own special brand of crazy... but we T1D claim our own)

For example:
Fighting the overwhelming urge you have to NOT over-treat your child's low. This is your baby (no matter how old they are) and it breaks your heart when they are feeling terrible, crying those huge tears and begging for something to eat yet you have already appropriately treated their low and you KNOW in your mind that you/they must just ride out that feeling and the BG will come up. But your HEART tells you  that you want to make them feel better so you WANT to give them something more so that they FEEL BETTER!!!! STRESS. We never want our children to feel poorly. And here we are making these decisions that are in their best interest... but it doesn't make it any easier!

AND let's talk about the overnight lows. Yes, most thankful for CGM technology that now reaches to my nightstand so I can at any time wake up and without getting out of bed look at her BG readings and know if she is OK or not. When she is not, when she is low in the middle of the night, the challenge begins. I have a DEEP sleeper on my hands, so first of all, getting her to wake up is a task in itself, especially if she is low. Stumbling over to her room and not breaking my neck because I was just startled awake by an alarming CGM is an accomplishment. Next, trying to convince her to wake up and further convince her to eat a couple of glucose tablets is about as frustrating as it gets (trying to feed glucose tablets to a rag doll comes to mind). The entire sequence of events must be about the most absurd looking thing (if anyone could ever see it). But my real worry? What is that doing to her teeth? Nothing I can do about it - have to treat the low. But here she is chewing sugar tablets in the middle of the night... often (not often, often... but you know... more than any other kid without diabetes). STRESS.

Or here's a really good one...testing. Gotta do it. A lot. No way around it. But on those little fingers, you only have so much real estate and you use it up quickly. I hate to see callouses on those delicate little finger tips. Well, perhaps callous is a strong word but they sure are taking a beating. And yet my girl is a trooper. Since she was diagnosed at the age of 3, I don't think she has complained or winced once over the testing. So brave and strong. Doesn't mean as parents we have to like it. STRESS. You would think in this age of technology, they could come up with some amazing gadget that would be far less invasive to accurately test BG levels. 

This is only a fraction of the list of "little things" that a T1D parent worries about. But in the interest of not boring everyone, I tried to keep it brief :-)

Bottom line, as a mother of a little girl with T1D - I "obsess," I "worry"... you know, I just want to get it right.  But I don't let it show. For her I will always be strong. I share it with others so they understand. I believe the more awareness we create for T1D, the better off we will be. Perhaps the closer to a cure. HOPE. 


Thursday, February 21, 2013

Our Type 1 Story

So, here is our story...We just "celebrated" our 4 years with type 1 diabetes. 

They were 3 years old and we thought everything was going along well... or as well as can be for the chaos that comes along with twins!

Then we noticed she started not acting quite right. Saying she wasn't feeling well before bed. We weren't quite sure what to do at first - thinking maybe it was just your typical ploy to get out of going to bed. But very quickly picked up on the fact that it was accompanied by intense thirst. It doesn't start out that way - it just starts out as asking for a little more, and a little more. Until it become "out of the ordinary." Extended all day long.
Then there was the lethargy. After waking in the morning - she would want to lay on the sofa for about an hour and I thought to myself... "wow, that just isn't right. A kid of this age really should have more energy."

So, I mention it to my husband. All of these "out of the ordinary" behaviors. And say - "watch her" and see what you think. "Something isn't right." I just knew. And after watching, he agreed. Then after clearing that validation, I mention it to my mom and sister on a shopping trip with the kids. I say, "watch her, see what you think. This just isn't right." And they too agreed. So that afternoon I called the pediatrician.

I get the nurse who I proceed to spill this whole story to and she asks me kind of a funny question. She asks, "is she acting "sick?" and I say, "well, no - not SICK." And she says, "well, we don't really test them unless they are acting sick." and I was at a loss. I said, "no, really. There is something WRONG with this child. You NEED to test her and it must be now." And now that I reflect further on this, that whole question really disturbs me. How many people walk away at that time? How many people are satisfied with that answer and don't demand that their child get proper help or testing? Maybe she was in a hurry. Maybe.

But when the urine results came back - it was Valentines morning (2009) that I got the call from the doctor. Yep, I knew I was in for bad news when I got a call on a Saturday morning - a holiday - from the actual doctor. She said there was sugar spilling into the urine and they wanted a blood test. So, I, still not grasping the gravity of that news, said "OK, well, it is Saturday and most labs aren't open, right? Should we do this Monday morning?" and she said, "No, you must leave the house right now and go to the hospital and they will run the test for you." OK, a little abrupt and this got me moving.

Now, the hospital is a good 20-25 minutes from my house so until we got there, had the test and drove home. We were surprised that our phone rang about 15 minutes after we walked back in the door. The doctor again. "OK" she says, "her blood glucose level is 619. I need you to pack some things in a bag - enough for 3 days - and drive to the hospital."

And so it began. Our diabetes life. It took me about 3 minutes on the phone with the doctor for it to really sink in and then to realize that we would face this with courage and grace and with our heads held high. We would be open and honest with people. That I would be her diabetes partner - that I would live my life as if it were my diabetes - for it is me that sacrifices sleep, it is me that has mastered everything there is to learn (although I believe there is always room for improvement) about her equipment and new technologies, I have become our resident expert on Type 1 Diabetes. I would give the world if I could just take this away and carry the burden for her. But I can't, so instead, I will make it as great as I can for her. I will have a great attitude. I will expose her to great things. I will show her that she can accomplish anything anyway. We are in this together - our whole family.

We hope for a day when she can live without diabetes. I believe with my whole heart, that she will see that day in her lifetime. There is currently no cure for Type 1 Diabetes... but we have HOPE ♥