Holy shit. I just got the print outs from the CGMS that O wore a couple of weeks ago. It sucks ass.
7/6
Average BG - 195
Range - 162 - 236
Duration high - 65%
Duration in limits - 35%
7/7
Average BG - 254
Range - 190 - 362
Duration high - 100%
7/8
Average BG - 227
Range - 133 - 345
Duration high - 80%
Duration in limits - 20%
7/9
Average BG - 198
Range - 140 - 255
Duration high - 69%
Duration in range - 31%
I have all these graphs that I can't really make heads or tails of right now. The duration high/in range numbers are confusing because it doesn't look like she was ever in range, really. The CDE is supposed to be calling me to discuss the results, but man, those are some shitty, shitty numbers.
I hate this. I feel so overwhelmed by it sometimes that I just want to go cry. We both try so hard - we check 10 - 15 times a day. We correct. We adjust basal rates. We're in contact with Joslin. I'm not slacking off. So why the fuck can't I get it right? Why do I feel like the world's biggest failure? I feel like I'm hammering nails with feather, for all the good I'm doing.
All that sticky blood, sitting there in her system, doing what it does, slowly damaging things. All the visions of kidney problems and eye problems and nerve problems that all these highs could be causing. It goes around and around the groove in my brain incessantly. It makes me nuts. It worries me sick.
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11 comments:
Oh Julia, it's not you. It's the current inadequacy of all the tools and bells and whistles out there (and yes, this includes pumps, human insulin, whiz-bang blood meters and yes, the continuous glucose monitors) to mimic, exactly, what a normal functioning pancreas does.
This is why insulin is not a cure, and this is why getting to the root of the diabetes problem should be every researcher's goal.
Don't blame yourself. Your doctor will likely have some suggestions on how to avoid highs (a different insulin ratio? lower basal rates to prevent going too low several hours after a meal, specific recommendations about certain foods, etc.) But honestly, we're all just doing the best we can with the tools we've got.
Adding to the it's not you brigade:
O. is on the verge of puberty. Hello, fucked up blood sugars beyond comprehension. Hello, high one day, low the next. Hello no rhyme or reason to the whole damn thing.
Also: lots of us out there in diabeticland who have/have had equally not so great sugars and are twenty or thirty years down the line not dead/blind/on dialysis.
Not to imply that you shouldn't try, but that periods of crappy control do not necessarily equal death sentence.
It's important to give yourself and O. credit for trying, even if it doesn't seem like it's doing a lot of good.
Big hugs to you, O. and the whole family!
I know so very little about diabetes that I can't be of any help, except to say that you're doing the best you can and maybe you just have inadequate tools. Research, man. Hopefully research will catch up to need and SOON!
Big hug.
Lyrecha - yeah, I know. It just makes me feel inadequate, given that I'm doing so much, but not getting any results.
Art - Verge of puberty? She's in it with both feet, up to and including the oh-so-fun teenage PMS mood swings. Oy. I know that there are lots of you out there with no problems, I think it's just the crap shoot of the whole thing, you know? You just don't know what's going to happen. And I realize that I borrow trouble like a sailor drinks rum, but I can't seem to help it. So I worry incessantly. It's just what I do.
Andrea - thanks. The tools do suck. Hopefully they will get better, or better yet, they'll find a damned cure.
Just a message of support from someone who isn't dead, blind, hobbling or on dialysis and has more than twenty-one years living with diabetes.
You can't be perfect all the time, in fact I truly believe the stress of trying is worse for the body than falling a little short of optimal numbers. I certainly have been out of range at least as often as in it.
I do think it's worse for you than it is for O. I know it was for my Mama. I could tell when she was stressed about it. She'd start loudly protesting at the cafe staff if they didn't have skim milk for our coffee for instance. She was worrried that the fat in milk would harden up my arteries. I just wanted to die of embarrassment.
So don't blame yourself, just hug yourself and your daughter. The numbers will come down again and, we have to trust, eventually there will be a fix for us.
It's the ESTROGEN surges. Puberty is like menopause in reverse; huge surges and swells of hormones. Lovely.
I bet her triglycerides are off the chart. Have you ever heard of the Ron Rosedale diet? My dad is doing that now, and he's really on a better track. It's HARD; I won't fib about that. NO CARBS for 21 days. As in, low glycemic vegetables, meat from sea or grass-fed sources (no grain-fed beef) and NO FRUIT OR SUGARS OF ANY KIND. It turns one into a fat burner v. a sugar burner. I'll be going on the diet starting when the boys go back to school. I'll let you know how it goes.After the 21 days, you can add small bits of certain carbos back in.
And -- you are NOT failing in any way! Give yourself a huge pat on the back for doing so much. It's her hormones that are playing havoc right now. You cannot do what science has not yet invented, as someone else said. I can't believe you're able to do so much.
Is she having periods yet? On the last half of her cycle, she should be easier to manage since progesterone will kick in if she is ovulating. Day 11-12, when ovulation is getting ready to happen (or 16 days before the start of her next period - impossible to figure with irregular cycles), will be her highest Estrogen day. When she starts to have regular periods, her E2 won't be so nuts, and you'll be able to track her high days.
You are doing a fabulous job. You really are.
Honestly, Julia, what everyone else said. The puberty, the not-as-adequate-as-the-real-thing tools, and just that this disease sometimes does what it wants to - in spite of our very best efforts to control it - make dealing with it a real fucking bitch.
The fact that you used the CGM, the fact that you're working with the docs and CDEs, the fact that you've got all of us to share the frustration with are all of what matters.
I'm just about 25 years in now, I'm still whole. Complicated in many other ways - but whole.
I'm thinking of you and O as you muscle through this new trying period.
ox, N
Dude,
You're doing all THERE IS TO DO. If you were shooting O up with Karo's Corn Syrup, THEN you could rightly feel like a failure. (Or worse!)
But from my cousins who have diabetes, puberty is an utter spin-cycle ride.
In fact, you're doing better than 90% of moms out here.
-J.
Julia,
Yes. I know.
Reading this post makes me petrified to think of what we might see if Joseph were to wear a CGMS.
You are doing a wonderful job, but every other parent of an adolescent I've come across has told me the same thing (including you, woman). Puberty sucks. Insulin resistance goes up. Blood sugars become erratic...
Cold comfort, I know.
Hang in there-- and please know we're all here if you need to unload.
(Btw, thanks for being there for me last week)
Oh, my friend, don't beat yourself up for this. You are doing the best you can, and from what I hear, your best is damn good.
This is a variation of what I told Sandra (mainly because I don't have the desire to cut-and-paste). What's important is that O gets into good habits regarding diabetes now rather than worrying too much about a high A1C during puberty. It frustrated my husband's parents to no end that his were in the 8's and 9's and there just wasn't anything they could do about it (and as a surgeon and a nurse, it was even more frustrating) other than doing the best they could. However, I think it was key that the A1C's were fairly stable - even if a bit high. Anyways, he learned how to manage his diabetes and developed the good habits and by the middle of college, things settled down with the hormones. And nope, no complications!
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