What I wish you knew about T1D…Diabetes Blog Week 2012

I have already blogged about this topic http://s782639264.onlinehome.us/?p=298 on my own, but seeing as there is so much that I wish you would know about living with Type 1 diabetes, that I am going to write another one today.

1. Diabetes is always on my mind, yet is it never on my mind.


Let me explain.

When you and I are having a conversation about the new salad restaurant that opened in our town, I am listening. I am following along, thinking about what kind of salad I would get if we decided to go to lunch one day…and then I hear an ambulance…As I live only 2 blocks to school my thoughts immediately jump to figuring out where the siren is going (towards the school?) and if my son could have dropped so low that they were forced to give glucagon and call 911. So, yeah, I was in the salad restaurant conversation, but in a heart beat I am out of it.

2. Diabetes is the absolute last thing when I think about my son, yet it’s the first.


Let me explain.

When I see my son, I see a gorgeous, intelligent, funny, lanky, bike riding 8 year old. I see a kid that makes me smile and cringe at least 100 times a day. I see a great big brother and an annoying big brother. I see a kid that loves his waffles with chocolate chips for breakfast.

Then I see diabetes. When I see a bike riding 8 year old riding a bit too slow, I wonder if he is going low. When I see an annoying big brother just getting a bit too much, I wonder if he is going high. When I see a kid that loves waffles turn his nose up at them, I wonder if he has ketones that are making his belly hurt.

3. Diabetes is the first thing that pops in my mind, but the last thing I would ever say.


Let me explain.

My son is a dreamer. He is brilliant. He has all these plans for when he gets older that he is going to fly out into Space as well as explore the deepest depths of the oceans. He talks about climbing mountains and backpacking across Europe. He wants to travel across the US in an RV for one summer (ok, that’s my idea too).

When he talks about these things with immense excitement I think about his diabetes care, where he will get insulin while backpacking. I wonder how he will keep his insulin cold while travelling to Space. I am concerned what will he do if he goes low while scuba diving in Belize.

When he talks about these things I say it will be awesome, honey. I say that sounds exciting, I can’t wait for you to do it. I say you are going to have an awesome time.

Diabetes is here and it’s here to stay. I do my best to keep it out of my thoughts, my mind and my spoken word. We know it’s here, we know we have to deal with it, but we don’t have to give it center stage.

Fantasy Diabetes Device…Diabetes Blog Week 2012

Definition of FANTASY

: the power or process of creating especially unrealistic or improbable mental images in response to psychological need <an object of fantasy>; also : a mental image or a series of mental images (as a daydream) so created
Unfortunately I do not believe there will be a cure in my son’s lifetime. So my gut reaction answer has to be a cure.
But out of respect for Diabetes Blog Week I will give thought to a fantasy diabetes device that I would appreciate for my son.
I would love a blood glucose monitor that would work without pricking his 8 year old skin. His fingers are showing the wear and tear of checking over 10 times a day for almost 5 years. For you math buffs out there, that’s over 18,000 blood glucose checks that my son has had to endure.
I have seen tattoo glucose monitors in the news, and infrared devices that read through the skin, but unfortunately none of these are accurate enough for dosing of insulin (and not to mention years away from FDA approval).
With the advent of the insulin pump, and site changes taking place every three days, it is blood glucose checks that are the most intrusive in my son’s life.
It would be glorious to be able to check my son’s glucose in mid-soccer ball kick just by running a wand near his finger (or forehead or whatever).
This post is hard for me to write. I am a realist. I am an “it is what it is” kind of gal. I do not allow myself the luxury the daydreaming about fantasy diabetes devices for fear that I might begin to resent what is out there for us.

One Thing to Improve…Diabetes Blog Week 2012

Well, my house could be cleaner…that’s certainly one thing I could improve. Oh wait, you mean one thing I could improve about my approach towards diabetes.

Some days I could do every single thing better. Some days there is not one thing I could have improved, it was that kind of lucky day you get once and while. Diabetes is tricky like that. One day you are on top of the world how you kicked D’s butt that whole day, and then the very next day you feel down in the dumps because no matter what you do, it isn’t right.

I did ask my son before he left for school this morning, “What is the one thing mama could do better when it comes to caring for diabetes?” He said, “What do you mean?” I explained the blog ‘contest’ to him and said I have to write about something that I could do better when it comes to diabetes, like testing you better, or something. He though for a minute and then he replied, “Nothing.” While I don’t believe him, I do know my heart swelled 10X it’s size after hearing that.

My son was diagnosed 5 years ago. From day 1 I was on my own. I faxed my numbers for 2 weeks straight and no one responded. Yes, when I would get them on the phone after waiting 3 days for them to call back then I had to fax a whole set of numbers, and then again, no response. It went on like this until I found www.type1parents.org where they became my sounding board. Everything I learned about diabetes I learned from Think Like A Pancreas by Gary Scheiner and Type 1 Parents. I would read about something in Think Like A Pancreas then bounce it off the members of T1P and then I would gather all that together and use it in my own decision making process for my son’s care.

Fast forward to 4 endo appointments a year for 4 years, so for 16 endo appointments my endo gave me advice regarding my son’s care that would have literally killed him. Taking basals that were .8 and asking for me to make them .4 even though the numbers looked awesome, just because .8 seemed to much for a 4 year old. He had never heard of that so therefore it must be wrong. 16 endo appointments came and went and NOT ONCE did I stick with the changes that the endo made on my son’s pump. NOT ONCE did I leave there feeling confident the changes were going to work. Therein lies my problem, the one thing I’d like to improve, I do not accept advice on numbers very well.

Up until a year ago I had no reason to trust my endo to help me make the right changes. Even his own CDE would say to me, “You’re not going to make those changes, are you?” Clearly showing her exasperation with the nonsense the endo was feeding me.

Now that we have a new endo, I am slowly learning to accept the few changes that he asks to make on my son’s pump. Of course I have to agree to them, and we discuss any concerns that I have, but it has taken me almost 5 years to accept that some changes made by an endo are good and helpful and should be at least attempted.

It’s a good thing to work towards, a good thing to improve, every one deserves a second set of eyes when checking over numbers. Hopefully after 5 years I finally have someone that can help me grow in this area. Help me help my son.