Complicated
A letter in the mail from McClinic.
My stomach seizes up. I slide my finger under the flap. I hesitate. They would call if it was bad news, right? Maybe I should wait til Pili gets home to open it. Do I want to open it in front of Pili if it's bad news? Or do I want to process it myself first?
Visions of my hectic day - the lunch I'm now snacking on before dinner, the cookies and chex mix I actually ate for lunch (quick glance at the side of the bag of cookies, quick estimate that happens with barely a nod to counting and calculating) - spin through my head. Without opening the letter, I think, yes, this is what you get. You get what you deserve. For not always, every moment of the day, putting the disease first or even second. For being normal.
I open the letter, unfold the paper. Biting my lip, tensing up for the blow. Scan down the page.
Your microalbumin was 2.0 . This result is considered: normal
Yes, this is what you get. You get what you deserve. For not always, every moment of the day, putting the disease first or even second. For being normal.
I don't know if this thought will be inspirational or terrifying for those of you in the OC whose children have diabetes. I hope it will be reassuring, because I can pretty much assure you that your children will not have AICs under 7 every day of their lives. And that that doesn't mean that their world is going to come crashing to a halt in a blind-limbless-incontinent mess.
In the comments over at Sandra's, Shannon wrote:
Have I been fortunate enough to avoid complications for twenty years so far? (knock on wood, don't notice me evil eye, keynahora, tut-tut-tut)
Yes.
Is that attributable to my never guessing at doses and testing ten times a day?
Um, no.
Right now, I'm striving for four or five times a day - and that's born again diabetic territory for me. So do I deserve complications?
...........................................
I guess what I'm trying to say is that, when you hear that someone doesn't have complications, you can't take on face value that they have done all they could to care for themselves properly. And on the flipside - when you hear of someone who has developed complications - you can't be sure that they didn't do everything possible to take care of themselves.
I can imagine that that's a pretty scary thought for the parent of a child with diabetes. All this work - this getting up in the middle of the night and calling at school and testing, testing, testing - might not make a difference.
That's not what I believe. The DCCT told us that it does make a difference.
But, it also means that maybe, it's okay to relax every once in a while.
And that no one deserves complications.
My stomach seizes up. I slide my finger under the flap. I hesitate. They would call if it was bad news, right? Maybe I should wait til Pili gets home to open it. Do I want to open it in front of Pili if it's bad news? Or do I want to process it myself first?
Visions of my hectic day - the lunch I'm now snacking on before dinner, the cookies and chex mix I actually ate for lunch (quick glance at the side of the bag of cookies, quick estimate that happens with barely a nod to counting and calculating) - spin through my head. Without opening the letter, I think, yes, this is what you get. You get what you deserve. For not always, every moment of the day, putting the disease first or even second. For being normal.
I open the letter, unfold the paper. Biting my lip, tensing up for the blow. Scan down the page.
Urine microalbumin or total protein: This is a test for early kidney damage due to diabetes. Normal levels are 30 mg/g of creatine or less. For this test to be significant, it must be consistenly above 30 on repeat testing... Microalbumin levels are also used to follow the rate of progression of kidney damage.
Your microalbumin was 2.0 . This result is considered: normal
Yes, this is what you get. You get what you deserve. For not always, every moment of the day, putting the disease first or even second. For being normal.
I don't know if this thought will be inspirational or terrifying for those of you in the OC whose children have diabetes. I hope it will be reassuring, because I can pretty much assure you that your children will not have AICs under 7 every day of their lives. And that that doesn't mean that their world is going to come crashing to a halt in a blind-limbless-incontinent mess.
In the comments over at Sandra's, Shannon wrote:
When you hear of complications, you can't take for face value that the individual did all they could to care for themselves properly. How often did they check themselves? Did they guess at doses or did they take care to calculate how much insulin they needed based on glucose numbers or carb counts?
It takes approximately 15-20 years for complications to show if they do at all.
There are a number of PWD's here who blog who have had diabetes for more than 15 yrs with Zero complications. They have tight control over their management. Do any of them have complications? No, they don't.
Have I been fortunate enough to avoid complications for twenty years so far? (knock on wood, don't notice me evil eye, keynahora, tut-tut-tut)
Yes.
Is that attributable to my never guessing at doses and testing ten times a day?
Um, no.
Right now, I'm striving for four or five times a day - and that's born again diabetic territory for me. So do I deserve complications?
...........................................
I guess what I'm trying to say is that, when you hear that someone doesn't have complications, you can't take on face value that they have done all they could to care for themselves properly. And on the flipside - when you hear of someone who has developed complications - you can't be sure that they didn't do everything possible to take care of themselves.
I can imagine that that's a pretty scary thought for the parent of a child with diabetes. All this work - this getting up in the middle of the night and calling at school and testing, testing, testing - might not make a difference.
That's not what I believe. The DCCT told us that it does make a difference.
But, it also means that maybe, it's okay to relax every once in a while.
And that no one deserves complications.
posted by art-sweet at 8:33 PM
8 Comments:
CONGRATS on normal kidney results. That's awesome.
Please don't beat yourself up for not testing a million times a day.
I've been type 1 for 28 years now. I was a kid at diagnosis. This was when urine testing was in vogue and I took one shot of regular and NPH for several years. That was what you did in the late '70s.
But today, I test up to 12 times a day and I'm on a pump that gives much better control than shots ever did.
Do I have complications? Well, yes, but I don't think of them as horrible. I see an eye doctor way more than most people to check for non-proliferative retinopathy. Never had laser, and my eyesight is better than my non-D husband, who is nearsighted. I take an ACE inhibitor because once I spilled a trace of protein in the urine, but never have since. I take a thyroid drug for an underactive thyroid.
But frankly, taking extra pills and seeing doctors more frequently doesn't bother me. If these are the extent of my complications, I'm thrilled.
In this age of blood meters and pumps and the soon to be continous glucose monitor, the tools are there to keep tighter sugar control than ever. I think it's the long-term high sugars, being at 300 for weeks, skipping insulin altogether, that leads to the serious complications. It's possible to avoid them with the tools out there today.
God, I'm wordy. Sorry for hijacking your space!
Thank you for this. Seriously. Thank you.
Way to go on the kidney thing.
The rest of it? Totally agree. No one deserves complications. Period.
First-- Congratulations on the normal test results! As I read this post, I found myself tensing
right along with with you for that awful blow.
And when I read your results, it brought tears.
Man, I'm tearing up just writing this... nuts, eh?
And yes, any time any of us reads of the complications of diabetes, parent or not, it's got to be scary. Knowing that sometimes what we do won't stop them from happening.
But you are right, that flipside does offer some comfort-- that we can't be perfect all of the time. And that's okay.
You see, I know with certainty that there will be times in my son's life (maybe in high school, maybe in college, possibly sometime in his adult years-- maybe all three) when he will likely rebel against this disease (or just plain get sick of it); when good control will fall by the wayside.
Will he deserve a complication should he develop one down the road?
Because he was human, and not some kind of perfect machine.
Because he just needed a break.
No.
It will upset, and frighten the hell out of me, but I will never blame him for anything this disease throws at him.
I too, struggle with trying to test at least 5 times a day and I also think I am a born-again-diabetic. When I think of complications I think I have made it this far (21 years!) without them by pure luck. There is no other good reason why I don't have them. My control is poor, my A1c's high and I have had more than a couple seizures due to low blood sugar. Rationally I know that it is not pure luck, but since I am so hard on myself I sometimes feel as if it is. No one deserves anything this disease throws at us, especially complications, but when I look at someone who has made the sacrifices and dilligintly taken care of themselves, and then I look myself, I can't help but think that I am the one who should end up with the complications if one of us had to.
Here's to no complications!
Did you interpret my comment as me saying that if you aren't strict with management that the person deserves complications? I apologize if my comment seemed that way (or were you just using it as a segway to the flip side of my statement...I can be dense when following someone's point)
It's hard for a parent to manage their child's diabetes, but I've often thought it to be near impossible to manage one's own diabetes.
My hat is forever off to those who have diabetes and manage it on their own no matter how disciplined or not they are.
Congrats on the great results :)
This was a great post. Not only for your description of the looming letter, as I have also had that- do I open it now, or wait feeling. But for addressing the complications issue. I could not agree with you more. My biggest fear in life is looking down at my own wake and hearing, “what a shame, if she only took better care of herself.” Silly, sure, but true.
I think of a book I've seen, something about how good do you have to be to get into Heaven. I often wonder the same thing in terms of dodging complications... We do the best we can, and that's all we can do, right?
Caren
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