Tuesday, February 21, 2012

How am I doing? Not great

I've been wanting to write this entry, but have been hesitating. 
I'm afraid it will make me look weak, and well, I feel weak enough on my own, I don't really need the confirmation from others.
However, when I changed the name of my blog, I promised to keep things real.  I promised to let that weakness show through. 
So, here we go. 
This is one of the hardest things I've ever had to do.  This whole diabetes thing, I mean.
It is so so hard.
The thing is, I know that no one understands that.  Unless you've been where we are, you have no clue.  People think diabetes can be controlled with diet and exercise.  And while that's true in type 2 diabetes, it is not true in type 1.  I know I said it in my last post, but no amount of exercise...no perfect diet...nothing we do will make her not dependent on insulin.  Her body doesn't make it. 
Her body has decided that it would be fun to destroy her pancreas.  I'm having such a hard time with this.  I don't understand it.
CHD makes more sense to me than this.  I mean, the fact that a heart ever forms normally is the thing I don't understand.  It's so involved.  It makes sense that it doesn't form perfectly every single time.
But this....I don't understand this.  How does it happen that one day your body just up and decides to start attacking itself??  I don't understand!
And the fact that I don't understand is making it so hard for me to cope with this.  Maybe cope is the wrong word.  I mean, we get through, we do what we have to do.  We check blood glucose levels all through the day and night.  We inject our daughter with insulin at least 4-5 times a day.  We count carbs.  We watch her behavior, trying to determine if her glucose is going too high or too low. 
We do these things, we get through, day by day.  What I'm talking about it coping emotionally.
I am having an incredibly hard time dealing with the fact that this isn't going away.  Ever.  Sure, there's talk of finding a cure, but who knows when that will be.  Right now we know it's not going anywhere.  This will be my sweet, sweet child's reality, forever. 
How does one accept that?  How does one deal with that knowledge?  Other than just doing what we do?
But yeah, it is so hard.
Days like today, I just want to curl up in bed and never leave.  Try to wake up from this nightmare.
After dealing with a day of low sugars all day yesterday, she woke up wanting daddy.  Well, daddy wasn't here.  She had a huge meltdown, didn't want me to check her sugar, didn't want to eat, just wanted daddy.  Finally, I was able to convince her that she would feel better if she ate.  And she did. 
I go crazy trying to figure out why her BG (blood glucose) levels do what they do.  For no rhyme or reason they will shoot too high, or drop really low.  I don't understand any of it.  Honestly, I'm a pretty smart cookie, but this disease has me so confused.  I hate the feeling. I  need to understand these different things.  And yet, I have a dear friend whose daughter has type 1 as well, who has been holding my hand through this, and who keeps telling me that there really is no reason for anything this disease does.  She says the sooner I accept that, the sooner I will stop going nuts.  It's in my nature to want an explanation though! 
So yeah, I'm having a hard time dealing with this.  I know, in time, it will get better.  Right now, it sucks.  Right now, I can't even say the words, "Emily has diabetes" out loud without breaking down. 
I guess if all this makes me weak, then it is what it is.  I feel completely weak and broken right now.
I just wish my girl would get better, and I know she won't.  That's the most helpless feeling in all the world.

1 comment:

Denise said...

While these feelings do not ever go away, they do become farther and farther apart. You may cry/be frustrated/angry/etc. just about every minute now, but soon it will only be once a day, then maybe once a week, and soon, it will only be occasionally. Diabetes is hard, very hard. There is no control and no one understands it unless they are living it. It is exhausting, the numbers...carb counting, bg levels, insulin ratios. There is so much to factor in, exercise, stress, illness, growth spurts. You will learn that just when you think you understand it, diabetes will throw you for a loop. But knowing all this will help you because it is not what YOU are doing. We can only do our best. Right now your daughter is in her honeymoon, which means that sometimes her pancreas works. that makes for more crazy numbers since you can't predict it. Anyhow, hang in there. If you need anything, let me know.

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