Tuesday, October 23, 2012

Feeling like a failure

There, I said it. And I know what the comments will be:
Penny, you are so not a failure.
You are doing such a good job.
You are doing the best you can.

And on other days, I might agree. But today, tonight, I feel like a complete and utter failure as a pancreas for my daughter.

The last six weeks have been nothing short of awful with blood sugars. She is high, then she is low, she is sailing on a smooth course, then BAM, she shoots down like a rock. She shoots over 350 and stays there for hours while I throw what seems like water on her highs. We treat a low and she shoots high. She gets stubborn lows and hangs in the 50s for an hour. She is high one day, low the next and I haven't changed one damn thing. She eats the same foods from one day to the next and her numbers are no where near each other on those days.

I feel like I want to throw something out the freaking window.

I feel frustrated, because with all these highs and lows, she misses class time. She is with the nurse treating the low, adjusting the high, and she misses class. Class that she loves.

She got her report card and it showed a damn near gifted child, who is so far above the other kids that she scored percentages that are near what the guidelines are for exiting 5th grade. In October. And I think, damn, just think what she might do if she was in class all the other time?!

And she broke down tonight and cried about it all. How she wishes she didn't miss any class, and she wishes that she could just have a day of good numbers. And I told her all the right things  - that it will all be OK, that we will get on the right path soon, that Mommy will once again sit with the basals and corrections and ratios and adjust it all, so that tomorrow honey, no lows or highs.

And I feel like I lied to her. Cause tomorrow is gonna be one great big sucky rewind of today.
And the day after that. And after that.
On and on and on.

Cause I feel like I am lost and I cannot find my way back. That I am lost in numbers and ratios and counts and adjusting. Just completely lost. My head swims with the numbers and the damn, freaky graphs on her CGM, which look like mountains and hills and glaciers. Yeah, they aren't supposed to look like that, are they? They do. Every damn day for the last three weeks.

I feel guilty cause I am the programmer of the pump. She's 10, she doesn't do that yet. I control the almighty insulin. And the lows make me feel like shit. And they make her feel like shit. And the highs have me angry. And they make her angry.

I'm the puppeteer of a pump.

And I keep it all from her. And I tell her it's OK.
I feel like I am lying.


Erin said...

You're right about my comment, because I'm about to say YOU ARE NOT A FAILURE.

I'm not a D-mom, but I had one - I was diagnosed when I was 4. And honestly, the story you're telling about your daughter's numbers is just like mine. My blood sugars were constantly all over the place. I got the easy part of the job, though, because I didn't worry about it. I left that unenviable task for my parents.

I obviously took over the worrying when I got older, but even now, I don't carry one ounce of blame against my parents. They did the best they could, just like I do the best I can now, and you're doing the best you can. You have to forgive yourself and know that you're doing what you need to do. I think your daughter is luck to have you.

Colleen said...

There is no ryhme, no reason. Dx'd later in life, I said to my husband tonight, "I don't know how the kids deal with this. After a way high afternoon that dropped to a way low evening, who knows why/how this is going on?"
We all do the best we can...

Sara said...

Predictable comment -

There is no way a pump and a person (any person!) can replace a human organ! You are doing your best and your daughter knows that!

Anonymous said...

She's 10. You are starting the most intense roller-coaster ride of your life.. prepuberty, puberty and early teen years. The most difficult period in which to manage Type 1 (assuming she was not diagnosed as a baby/toddler). You will see that the extreme growth hormones during this time period will indeed make insulin appear as if it is water. You may have to double and occasionally triple her dose from dinner thru 3am many a night. After which her insulin needs drop back to normal. So it's an intense and scary time. Even your endo will not prepare you for it or even acknowledge such swings are possible. Put on the coffee pot, hit the temp basal button up 200 percent and test every hour and a half. Thank God she is wearing cgms. On nights you cannot be very aggressive, you have no choice but to play it safer and she may be high those nights. You cannot know how strong the growth hormones will be kicking in each particular night. You cannot know when the growth hormones will cease and she will again need less insulin. So play it two hours at a time for as long as you can each night but only if you are sure you can stay awake. You will get through this. We all do. And, yes, there is light at the end of the tunnel. Our DD is now close to 16 and there is NO comparison as far as D management goes. Swings during the period, ovulation and sometimes just swings in general but no comparison to years 11 thru 14. You are not a failure. But gear up for the four years of hell before she stops growing (about two years after her period starts). You will find your way. But is is HARD! Unbelieveably so. Don't blame yourself. It is what it is.

Joanne said...

All I can say is I feel you... Same story over here. Elise swung between 47 and 474 yesterday, and I just feel like I am failing horribly. No discernable pattern, so how am I supposed to make changes?

But we are our own worst enemy, aren't we? As I read this I thought, "she's doing the best she can! She's not a failure, she amazing for caring so much and doing what she can with the tools she has."

My question is, why can't we extend ourselves the same grace we do for other d-mamas?

Sara said it best, we are not meant to replace a human organ... We just aren't.

Unknown said...

First off the "predictable" comment: Penny, you are doing the best you can. YOU are not failing anyone, no how, no way, anytime of any day. You are my "go to" gal when it comes to settings/recommendations etc.

Now the "same-same" comment: I totally know how you feel. I've been there...and I am sure I will go there many, many, many, many more times during my gig as Joe's pancreas. It is a challenging/difficult/unpredictable task that we perform. Very few people understand that.

Chin up girl. Keep plugging away. You did not lie to Grace...you will find the right basals/ratios/corrections for her body and where it is at right now. As you and I know, it will take time...nothing is "immediately" fixed when tweaking pump settings. Tweak/study/repeat...and know I am right alongside you (here in VT) doing the same thing. WE.CAN.DO.THIS.

LOVE YOU!!!!!!!!!!!!!!!!!!!

Anonymous said...

I am so right there with you. I told my husband this morning that I feel like I'm doing a horrible job. My 10 year old started on the pump 3 weeks ago and I'm still testing her SEVERAL times a night because I just can't get it right. Hours of highs were traded for hours of lows last night.

I also feel like shit when she feels like shit. She cried the last 3 times we've done an inset change. She wants me to know how she feels but she's very aware that I simply don't.

I feel like I lie to myself as much as I lie to her because I try to convince myself that everything is going to be ok and I'm just not sure it's going to be.

Anonymous said...

Penny, you ARE doing a great job! Diabetes can be a beast during the "best" of times....throw in puberty hormones and you see the dark underbelly lurking there. My daughter is 13 and we are riding the wild bucking bronco of blood sugars here too. This too shall pass...eventually! In the meantime I know it is so difficult to see your child upset (same here in our house)...trust that a stretch of bad days will be followed by a few good ones (like Grace's sleepover success!) and you will both get a chance to breathe easier.

Scott K. Johnson said...

"Penny, you are so not a failure.
You are doing such a good job.
You are doing the best you can."

And ditto what everyone else has said too.