Friday, March 6, 2009

I thought 90 was a feel good number

For Maddison right now, it isn't. At home and back in range, Maddison hasn't complained once about feeling low in the 90's. Scratch that....30min after breakfast this morning she said she felt low, she was 92. She started breakfast at 98, so I was just as worried as she was. I gave her 4 smarties to help her feel safe and sent her off to school with over 3 units active. That's what you call a well timed pre-bolus I guess. To Maddison it meant she was going to crash, and I'm sure being back to "good" numbers means she isn't used to what a 90 feels like. She did feel low, so an hour after school started she was in the nurses office insisting she was low or dropping fast. She was 98. By snack time 3 hours later she was 90. Maddison was frustrated, confused and angry that she felt low and wasn't. She told the nurse that she can't "concentrate" as she slammed her meter down in her office. The school nurse didn't call. She sent her to see the school counselor again instead.

I must say, our school counselor is a god sent. I can't imagine not having her there for Maddison's hard days. Although it is hard for most people to understand "WHY" Maddison feels low and isn't, our counselor always calls me to try and understand so she can help. She knows that Maddison isn't just trying to get out of class like so many other teachers assume when she complains of feeling low for the 5th time in a day. So, this morning the counselor called me at work to talk about Maddison's "sad" day. She said that Maddison was very angry at her meter in the nurses office earlier. She mentioned that Maddison just seemed so sad. She knows "sad" isn't typically how Maddison struts her stuff around school, she knows when things aren't going well for Maddison. So it was up to me to explain "why" Maddison is feeling so down. For me, it was an obvious, but for the outsider they assume she has "emotional" or "anger" issues as does the nurse every time we go through this.

I can honestly say that I am happy I have this nasty disease too. If I didn't I would probably be lost in understanding of why Maddison struggles so often. I wouldn't know what to say to help her some days. Of course as a parent we all feel our childs heartache. It's a good thing that I *really* understand how Maddison feels. I understand the "total" feeling. It isn't just a descriptive word, it is so many feelings all at once. The physical and emotional is just the obvious. Somehow Diabetes is so much more than this. The hidden feelings that are ever so silent always comes back from our sub-conscious mind and effect us when we are at our weakest, for Maddison the low feeling made her weak in spirit today. She was feeling TIRED of this Diabetes game.

Diabetes has been tough the last several weeks. I have been back to feeling totally defeated for not being able to get highs controlled. GUILT, for me has aways been a major issue, and today, I feel horribly guilty that it took me so long to get Maddison back in range, for now she feels low and isn't. I feel like a clueless Diabetes parent. After listening to the school counselor tell me of Maddison's sad day, I too, became overwhelmed with sadness. I felt like I was being smothered in emotions that were about to explode. On the long drive home I didn't cry. I'm trying to tell myself that Maddison's feelings will pass once she stays in range another day or two. I know another day or so will bring back the feel good in a 90. But, I hate how this makes her feel until then. Lows make you feel....more than just low. Maddison struggles in the classroom anyway, and today a "low" 90 blood sugar was all it took to cause her heartache.

I have always taught Maddison to insist to others when she KNOWS she is low or dropping. At home we can talk about why she is 90 with 3units active and will be okay. At home we can distract. We can give a few smarties to ease the weakness in her legs and confusion in her mind. At school she doesn't get the time she needs to "cope" with how she is feeling and why she feels low and isn't. At school the nurse has a protocol. We play it by my written instructions. There isn't any room or time in a school day to sit back and help Maddison feel safe. There isn't a mom who understands. Just the written protocol that Maddison doesn't understand. At school there isn't a mom to make a wiser decision based on pattern, described word or "that one time" that I didn't listen. Maddison knows this, and I think she struggles with trusting the nurse since I have always taught her to trust herself and her feelings. Of course this 90 range should be a feel good range. Right now for Maddison it isn't when she is at school....let me explain why.....

At home when Maddison is adjusting to being in range again she is fine. She doesn't have to sit at a desk and concentrate, take spelling tests and fight the feelings of wondering what her blood sugar is doing. At home Maddison knows I am here. She knows the difference between a true low and a feeling that is tricky. She normally waits out the feeling a few minutes to see if the strange feeling passes. At home Maddison is distracted by running around enjoying the sunshine, playing with her pets, enjoying her carefree style. Why is school causing us so much pain?

I think about how I feel when I am away from home and have a BAD low. I can say that a "not so low"-low actually feels alot worse sometimes because of fear. No one wants to be caught in a moment of weakness. Being away from home and wondering if this is the low that causes you to pass out makes you feel pretty darn uncomfortable. It often makes the low even more intense. Sometimes you want to hide so no one sees you, then you realize that being alone isn't the answer since you might need help. It is uncomfortable to be "out of it" when you are talking to a friend, a stranger at the store, a client at work. I imagine Maddison at school feeling this way, magnify that times a million for an 8yr old I would assume.

I picked Maddison up from school and we spent some time talking about her feeling today. She assured me that she was so angry and sad today because she couldn't concentrate. We talked about why the class missed morning recess, and that made her mad too. Then she told me on her lunch recess that a little girl she doesn't know poured sand in her hair. I asked her what she said to this devil child, and she said she told her to STOP and then the girl ran away. Then she told me she came back and did it again. She acted like it wasn't a big deal, but I can tell you it IS a big deal to me. I dont know what to I emailed the school counselor back for advice. Could Maddison really be dealing with something like this devil child all the time ON TOP of all the other crap she endures? I'm so heart broken. I'm waiting for a better time to talk about this with her. First, we need to have some fun. We are off to the park on a "nature walk"!!!


Scott K. Johnson said...

Ug. Poor thing.

Weak in spirit is a great description of what it can feel like. Just tired of dealing and wanting a break. Totally.

Jill said...

Awww I feel so bad for her :(

I struggle daily with not being able to fully understand how it feels when Kacey said she is high or low. I just spoke with her CDE today about it because Kacey has fought these highs all week and dealt with school on top of it and then today it hit her like a ton of bricks and she just surrendered to the damn D-Monster and who am I to force her to go to school feeling like that. Her CDE reassured me I made the right decision keeping her home and that way we could keep close eye on her numbers instead of stressing her even more and hitting the 400's. I've tried to compare this to the worst case of PMS that I could have. It's the closest thing I can come up with that would feel anything close to what she's feeling (uncontrollable mood swings, headache, tummy ache, hunger, achy, tired) I know it probably doesn't even come close and I know how I feel I can only imagine how hard it is on her little body.

We haven't had the outbursts at school yet but I'm sure we will eventually. The only thing we've had problems with is the concentration part. When Kacey is high/low her teacher says she can tell she feels funky and she zones out and doesn't pay attention to anything said. That leads to her not being able to complete assignments or doing them all wrong. I've tried to explain that this isnt Kaceys fault. We're still "new" to all of this and she's still getting new "symptoms" and it's not like her to fail tests and when she does then I told them that they need to see what her blood sugars were when she took them because it's not fair for her to have to test when she's high or low. I cant imagine how frustrating this must feel to the kids and they still cant put into words how they are feeling.

Anonymous said...

Now, I am very curious as to how to get BS to 90 and stay there a half hour after a meal? I imagine by drastically reducing the proper basal? We cannot do it. If she is at school she has to be 180 two hours postprandial because the insulin will continue to work for five hours (we hope we can switch to Apidra and that it can work well for her). 90 with 3 units on board, she would be on the floor in another half hour. At home we can get her to 160 two hours after but we will have to "feed the insulin" later. Please post how you manage this. Do you have cgms for backup?