Most of the frustrations stems from Princess, Not Princess herself, but her diabetes. You see, Lovebug's diabetes has always been pretty easy to "control". I felt like I figured things out with her pretty quickly. Princesses, not so much. (although you would think it would be a piece of cake since this was the second go round. WRONG.) Princess's diabetes matches her personality. Feisty. Diabetes and Princess is a lot like extreme bungee jumping. It scares the crap out of me. High, high, high has always bee the mantra when it comes to her diabetes, yet in a yo yo kinda of way. Low for her is 200...I rejoice when I see it. (how sad is that!?) We rarely see ( real) lows with her, unlike Lovebug who has lows much more then I care to mention.
Needless to say in the almost 2 years since Princess was diagnosed, I have never once felt like I had a good handle on anything related to her diabetes. Not at all. I thought after 6 months or so we would have things down and I would have a handle on it, but that wasn't the case. I felt like I had no idea what I was doing. Her a1c showed it too because it steadily stayed around 9.4 It dipped down to 8.9 once. It was like nothing I did would work for her and it was incredibly frustrating.
After her last endocrinologist appointment the end of November, another A1c up at 9.5 and lots of basal changes that weren't working. I was seriously feed up. I couldn't take anymore. I decided I was going to make some drastic changes. (I'll leave the details for another post) After trying (a lot)different things and pretty much makng my daughter a test dummy, we have come up with some solutions that seem to be working. That being said, I feel like I can breathe (a little) for the first time since her diagnosis. (it's been almost 2 years here) It is a HUGE sigh of relief that I haven't totally let go of yet but I am really optimistic! I might even be doing a little happy dance...
6 comments:
I also feel your frustration. I think it's the holidays. Relatives saying, she still has to have 4 shots a day? Hello? I feel like nobody will ever get it! If anyone cared wouldn't they learn a little about type 1 for cripes sake. I have my "she doesn't make insulin/it's an autoimmune disease" speech down pat and it falls on dead ears. Tired of talking, I want a damn cure.
HUGS! I feel ya... Elise USED to be so predictable and easy to manage, but the last three or so months have been awful. So much so that can't blog about it either. Her BG is all over the place.
It helps to know that I not alone in my frustration, even though it feels that way. Hope things continue to get better for you.
Sending you hugs heather and happy to hear things are looking up and your optimistic !! :)
My son is also like Princess. He is acting lately like he doesn't have diabetes. He will not test or bolus on his own. I know what you mean when you write that it scares you:(
I feel like that too sometimes. Blogging makes me think about it more than I want to sometimes
Glad Tim shared your post on FB. I love how honest and heart felt it is. Its odd how people think the second diagnosis would be easier. It isn't easier and it doesn't matter that we "know" what we are doing. Every cwd/pwd is different. While my daughter is easier to manage even though she was the second diagnosed the anger I still feel (nearly 3 years later) is more. The only thing easier about the second dxd is that I knew what to watch for and my daughter was never in the danger that my son was in 2 years earlier. At this point we are venturing into the hormonal teen years for my daughter and shit is getting crazy. Luckily she still tests and doses and hasn't tried to lie about numbers like many teens do. I am so glad that the last few changes have resulted in better numbers for Princess. I hope they continue to improve. Regardless of the numbers you are doing it right and I think it is wonderful that you and Tim make such a great team. Hoping 2013 brings you many moments of love and laughter and well behaved diabetes.
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