All too often we hear this question, as if people think that because our kids are on a pump or have a CGM, that magically makes controlling the blood sugar swings suddenly easier. I give friends a pass, since most of the time they are well meaning and truly want to know or understand...however, the more frustrating part is, I've heardthis question asked of me more times than not by (well meaning) DOCTORS.
Let that sink in for a second.
A week ago, I had taken Hannah in for a strep test. I wanted to make sure that her sore throatwasn't something that we could fix with an antibiotic,plus strep is super contagious so we like to know for sure if that's what we are dealing with, obvs. The pediatricians office we see has four or five doctors with kids who are type 1 diabetics; it's the main reason I started using this office. Most of the time we get placed with one of the doctors that have kids with diabetes, but every so often we get placed with one who doesn't. This night in particular, it happened to be a PA who doesn't have a child with diabetes, and out came that damn question.....
"Is it well controlled?"
Hannah just looked at me and I responded with a laugh. I've learned to answer with "her endocrinologist has us where we need to be" and leave it at that. This PA was fine with that, and even asked who her endo was, and when I told her, she knew who I was talking about. Cool. We moved on to the check up. Easy peasy lemon squeezy.
A couple years ago, right after Hannah's diagnosis, I took her into an after hours Instacare because she'd been sick and was dealing with high blood sugars, headaches, ketones, etc. I figured being safe was better than being sorry (always my motto) so in we went. The doctor saw in her chart she was a diabetic, asked THE question, and when I answered yes, she asked what her A1c was. Now, I was brand new to this and proudly said 7.4, which I had been praised for at her endo appointment just weeks before that. As a pediatric patient, 8 years old at the time, and still in the "honeymoon" phase of the disease, her endo was more than happy with that A1c because it meant we had good control without the terrifying lows that oftentimes happen with the younger kids.
To my horror, that doctor looked at me and wrinkled her nose in distaste at my response. Immediately I felt guilt wash over me...shame...I was doing a terrible job. As quickly as the shame was there, it was gone and was quickly replaced by rage. I glared at her. I vowed that this would be the first and last time I would allow a regular MD to have any ounce of an opinion where Hannah's diabetes was concerned. Going forward I would never share her A1c unless it was justly warranted.
As a parent who spends her every waking minute trying to ensure her daughter's organs are healthy, stressing over every single high blood sugar, and knowing the consequences that could come with lax control, I KNOW the importance of the A1c and what it means when it's too high for too long. I don't need guilt trips by doctors who only know what they briefly covered in medical school. They aren't specialists in the field of endocrinology, much less pediatric endocrinology.
I've gotten quite the thick skin since that day in that Instacare. I have no issue now telling a doctor it's none of their business, and, I've got a great pediatric endocrinologist to back me up, too.
CAUSE AND AFFECT
So many factors contribute to blood sugar control. It's such a mind fuck having to be my daughter's pancreas. We do the best we can, and some days we fail miserably. I feel defeated, Hannah feels defeated, and we want to give up...but we don't.
Some examples of things that affect Hannah's blood sugars are:
Full moons (this is not a joke)
Since we started using the CGM, it's been interesting watching certain trends. Today, for example this happened...
Notice around 10 a.m. there was a sudden spike? Around 11 a.m. Hannah's teacher texted me, letting me know that Hannah was struggling with some emotions, so she was letting her have some space. I texted Hannah to see what was going on, quickly determined that she was basically having a panic attack in the school bathroom, and told her I was coming to get her.
The spike in her adrenaline or just the emotions themselves sent her high, but as soon as she had stopped shaking and was with me, she came back down slowly.
How could I control that?
There is no controlling type 1 diabetes. We could do the same thing every single day and have different results every single day. Nothing is certain with this disease, and that's been really hard for me to grasp. I like having control, or feeling like I have control, and diabetes looks at me and laughs in my face when I get too cocky and think I've got this.
Wanna know my advice? Just support your loved ones who are dealing with this disease. Love them, try hard not to judge, and offer help in the form of booze, chocolate, coffee, and hugs. We are all doing the best we can with the shitty situation we've been dealt. If we snap at you, just chalk it up to sheer exhaustion and frustration, because trust me, we spend a LOT of time being both of those things. Our kids are forced to grow up, and we are forced to watch from the sidelines as they work their way through the challenges of this disease. It's a helpless feeling, and I hate it.