Tuesday, December 13, 2005

diabetes sucks...

I've been so frustrated the last few days that I can't hardly see straight.

Last week we got a letter from Lullah's endocrinologist with her lab results. Her HgA1C was 9.6%. It's a test that measures a persons average blood sugar for the last 3 months. Her blood sugars are NOT in control. The results for the last 3 visits (we go every 3 months) have been about the same, in the 9% range. The target goal is 7% or less.

The thing is, I'm pretty sure she isn't taking her insulin like she's supposed to. I think she randomly chooses her doses. She takes minimum of 4 shots a day. Her morning dose is an intermediate acting insulin(NPH) mixed with a sliding dose of a fast acting insulin(Humalog). She takes a sliding dose of the fast acting insulin at lunch and supper. She takes a long acting insulin(Lantus) at bedtime. She's supposed to decide the sliding dose based on the number of carbs she's going to eat. I think she's shorting the dose. In addition, she isn't taking the amount the MD prescribed for her am NPH or the evening Lantus dose.

It's been a long time since I've felt this helpless. She has to be the one responsible for her diabetes care, but she's not doing well. If I take over, she's going to end up resenting me for it. Also, I can't be the one to take care of her everywhere she goes. She's not 8 anymore.

I talked to her Friday night about the serious consequences of not getting her levels in control. Blindness, kidney failure (ending up on dialysis), amputation, heart disease. We've talked about it before, but not in depth because we didn't want to instill fear or hopelessness in her. But the reality of diabetes is that if you don't take care of it, you WILL end up with some really serious health problems. There's no maybe.

For a 15 year old, I guess those things seem like scary bedtime stories. But, for me the monster waiting in the dark is very real.

Mike thinks she's in denial. That she's trying to maintain some semblance of normalcy. If she does just what she's supposed to do and doesn't think about diabetes then, she's just like all the other kids. He's probably right. I also think she's afraid of her blood sugar getting low and acting foolish or having a seizure in front of everyone. Which also goes back to wanting to be normal.

I am so afraid and helpless right now that I feel like I can't breathe. I HATE DIABETES!!!!!!!!! I am being irrational, I know. This is a manageable disease and things could always be worse, but I'm so pissed about the whole mess.

I hate the bruises on Lullah's stomach from the shots, I hate that there isn't a cookie in my house, I hate the tiny specks on Lullah's fingers from the fingersticks, I hate the box of insulin in my refrigerator, I hate that every purse we buy Lullah needs pockets for her damn meter, I hate that food is a major topic of discussion at least once a day at my house, I hate the bottle of used syringes in my kitchen, I hate the look that people get on their face when the find out she has diabetes, I hate the food police that question her when she's eating something they think she shouldn't. I hate it. I just do.

And I don't know what to do.

2 comments:

MamaKBear said...

Oh, Kim! I really don't know what to say. As a Mom, I feel your anger and frustration. Diabetes sucks, I know. My Dad was diagnosed with diabetes a couple years ago, and I worry about him. My FIL was also diagnosed with diabetes about five years ago, and I've seen the complications of the disease. (He has a lot of problems with his feet.)

I can understand how Lullah must feel too...15 years old, diabetes is probably the last thing she wants to give her time to, but I hope you can get her to understand how important it is to get it under control.

In the mean time, try to be positive! Don't let it get you down.

Big hugs to you!

Hillbilly Mom said...

I can't presume to understand how she feels. I have a general idea, but mine was not nearly so serious. I had gestational diabetes twice. I didn't have to take medication, but tested 4 times a day. I didn't want anyone at work (the unemployment office) to know, because people are funny about knowing your blood is out in the open. I tested in the bathroom on my break.

I think you are right about her wanting to seem like the other kids, and not let it get too low. I've been around enough kids to know how they all want to be alike. The ADD kids don't want others to know they take medicine after lunch, either.

I kept mine in tight control the first time, but the second it was hard to manage. It got too low, never too high. In the mornings, it would sometimes be in the 60s, not the 85 that it was with the first pregnancy.

The worst part was that sugar test with the second pregnancy. It was the 4-hour test. I left to go back to work, and stopped for gas. I could not concentrate. I didn't know what I was supposed to do next. I thought maybe I just needed some lunch, so I got some potato wedges. That didn't help much. It was late in the evening after supper before I started feeling normal again. A few days later, I met with a dietician to go over the test results, and the little graph showed that my sugar had gotten way too low during the last half hour of that test. I can't remember exactly. It seems like it was in the 40s, but I don't know. That may be way off and mean I should have been dead. But whatever it was, I was mad that the lab people at the hospital didn't tell me that I better have some sugar before driving back home. Hey, it was the same hospital that let me wake up during surgery. Go figure!