Saturday, August 27, 2005

Up Again

It's 3:05 a.m. and I can't sleep. Joseph was high about two hours ago (247), and Ryan gave him a correction. I just checked him again, and he's 198.

Is this the way it's always gonna be? Night after night.

How is he going to deal with this on his own? It just paralyzes me sometimes. This fear of the future. The unending checks. I can do this. Ryan and I both can. But eventually, this will be his responsibility. To keep checking, correcting, checking, correcting...

I don't know. I'm just tired. And feeling kind of burned out.

This whole thing is just nuts. Why did this have to happen? Why him?

Joseph starts school again on Thursday. Already I'm worrying about his ride on the bus-- worrying that he might go low, and no one will notice. How will his new classmates react when they learn he has diabetes?

I'm just sick of it. Sick of this whole damnable disease.

It seems every day there is some horrible bit of news about a diabetes-related complication. Last night, Joseph was reading Diabetes & You, a magazine we picked up this week at a JDRF meeting. On the cover was a photo of a group of kids and the title, "Kids Speak Out." Sounded pretty good. But inside - among other horrors - Joseph found an advertisement for foot gel that pictured an insignificant looking foot wound-- a small cut, really. The ad's copy read "If you have diabetes, even a foot wound this small should be cause for alarm." And in bold blue letters, "If not properly treated, a diabetic foot wound can lead to amputation." Christ.

I don't want him thinking about ANY of that. He's just a kid. He doesn't need to go to bed in fear of losing one of his feet. It's wrong. This is so wrong.

Joseph is smart. He's a kind, sweet, funny, sometimes temperamental kid. Oh, and he's got the tenacity of a pit bull.

He doesn't deserve this.

No one does.

9 comments:

terrilynn said...

You're so right about that. It's hard, and it never seems to get easier, and if it does you can't enjoy it because you're waiting for the other shoe to drop.

Have y'all looked into any support-group situations in your area? We aren't faithful members of ours but I do keep in touch with some of the other mothers, and it's helpful when I'm so exhausted and sick of it to have someone to talk to who truly gets it. Liam hasn't felt the need for that yet, but it's been really good for me.

Jamie said...

Sandra - I came across your blog through Martha O'Connor's, via the Childrenwithdiabetes.com website. My daughter, 19 months old, was just diagnosed with Type 1 last month - you're not alone. I too worry about EVERYTHING. While she is still in the honeymoon phase of the disease, I worry constantly about her future - I'm so scared for the honeymoon phase to end and reality to kick in full force - I'm so scared for complications and her catching a cold or getting sick TOTALLY freaks me out!

It is going to be hard - there's no doubt about that - for you, me and our children - but I am trying to think of all the positives - and my goal is to teach her to take good care of herself and she'll live a long and healthy life ... (maybe I'm deluding myself?) - I just don't want this stinkin' disease to get in the way of anything she wants to do in life. Stay strong - you're a great Mom!

Sandra Miller said...

Terrilynn,

Thanks. Yes, I do go to a support group-- it meets once a month, and it really does help. It's just that sometimes, the relentlessness of the disease and its management gets to me. Usually if I'm sleep-deprived-- which, unfortunately, is what I was when last I posted.

Jamie,

Thanks so much for the kind words. I'm afraid you read my blog during one of my "lows." I'm usually more confident in our ability to handle all of this. It's just that every so often I need to let out some pent-up frustration.

And, I'm so sorry to hear of your daughter's diagnosis, but as you already know, this is not the end for her. I agree that she (and my son) will live a long, healthy life. Yes, there will be some work to do, but you can handle it, and so can she.

Take care, and let me know when you get your own blog up and running-- I would love to link it to mine. I think you'll find, as I have, that this blogging community is incredibly supportive.

carol said...

What is your son's latest A1C number? My daughter was dx in Feb. at age 8 and I am alternately frustrated and scared when I read your posts. Frustrated because I feel like you are being crazy about the "number". There are no bad numbers, just numbers. If your son's A1C is moving toward goal, maybe you can let go for a little while. Test at midnight, if you must, then adjust and see where he is at breakfast. And you and your husband: go to sleep. I get scared because maybe I'm too laid back. (my daughter's A1C: 17 at dx, 9.5 at 1st 1/4, 7.5 2d 1/4, 7.5 3d 1/4(this mo.) that said: you must do what you must do. and keep doing it, and keep doing it ... :)

Jamie said...

http://olsenfamily04.blogspot.com/

Sandra - here is the link to our blog. I whine alot on there LOL - it seems to be my sounding board though and I feel better after getting everything "out".

Jamie

Sandra Miller said...

Carol,

Joseph's A1c at diagnosis (one year ago) was 10.6. His last A1c (3 mos ago) was 7.5. Three months before that (when he was still on shots), it was 6.6!
His endo felt that hormones from a growth spurt, coupled with his first 2 months pumping, were behind the rise in his A1c.

I understand what you are saying about there being no "bad" numbers, but it's not the numbers I am being so crazy about, but rather, what those numbers do to him. Highs are miserable for Joseph. He becomes incredibly emotional and angry when his sugars rise (and this is BEFORE the meter tells him he's high). His personality is dramatically affected by blood sugar extremes.

In addition, while late night checks might seem unnecessary, we feel they are extremely so. You see, when Joseph has sustained highs overnight he always wets the bed. Always. And he absolutely hates when that happens. (see my "Home from Camp..." post)
He has to deal with enough just managing his diabetes. If we know that we can prevent him from wetting the bed with late night corrections/basal adjustments, then we will do them.

In addition to these highs, he's had a number of late-night lows that have been pretty scary as well.

One might think that we need to get a better handle on his basal rates/boluses. I would certainly make that assumption. Well, because he is honeymooning, his pancreas seems to be kicking in big time some nights, and not at all on others. We've given him the same food, same number of carbs, same time of night, with same activity level during the day, and have had widely varying numbers overnight.

I've discussed all of this with his endocrinologist, and she agrees with our approach.

That said, every child is different. What works (or at times, seems to barely work) for us may be way out of the question or even unnecessary for someone else...

Carol, I am so sorry for any frustration or fear my posts may have caused you. It is certainly unintended. Always keep in mind that only YOU know what is right for your daughter. Anything you read here is based upon our experience with our son.

Phew! Just realized how incredibly long-winded this response has gotten... sorry for that too :)

Take care,
Sandra

Martha O'Connor said...

Hi Sandra,
I know, I know, I know, I know. {{{hugs}}} You are strong, Ryan is strong, and Joseph is strong, strong, STRONG. I'm in a "low" (to borrow a D term) myself so that's the most encouraging thing I can say to you... I KNOW. I also know, from living a year with this disease, it will get better. IT WILL. XOX

Martha O'Connor said...

PS... If you don't already know this tip, it may help you get some sleep (maybe!) The 7-4-1 rule. After 1 hour, 70% of the insulin you gave remains in his system. 2 hours later, 40% remains. 3 hours later, 10% remains.. and you can most likely get some zzzzs without experiencing any significant drop in bg.

Anonymous said...

Sandra,
thanks for your response. you are so right about every person being different. my daughter's response to highs and lows is crankiness. and i can totally, totally relate to your superior desire to avoid the bed wetting. you are a great mom.
a tale to tell: last night as i was putting my daughter to bed after first half-day of fourth grade she said: you know, i started third grade without diabetes and then i was diagnosed. what if they find the cure so even though i'm starting fourth with diabetes i won't have it at the end of the year?
(ah. breaks your heart.)
so i said i don't think the cure will come that fast and maybe she'll be the one to find the cure. oh, no. says she. i can't wait that long!
none of us can.
take care.