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.