S.Y.D.C.M.S.

I'll tell you up front. This isn't an easy post to write. It's about imperfection.

I don't like imperfection. Not when it comes to my son's health. His future. 

Not when it's me who's been imperfect.

I've been thinking about this topic for a few days. And then I read my friend Wendy's post that hit just a a little too close to home. The post talks about diabetes complications, something I've been thinking a lot about lately. It's something non-D people don't think about much. They realize you need to worry about the low blood sugars, but the highs are bad too over a life-time. They can cause a host of problems including heart and blood vessel disease, neuropathy, kidney damage, diabetic retinopathy, damage to the feet and legs, osteoporosis, the list goes on. I once heard it described that every time your child has a  very high blood sugar it's like tiny microscopic shards of glass are flowing through his blood stream and causing damage to his organs. Now I don't know if that's really true or not, but that visual has stuck with me, and every single time. I see a number of about 300 or higher on his blood sugar meter, I feel a knot in my stomach. I sick feeling of worry, and guilt, and second guessing. What happened? What did we do wrong? Did I not give him enough insulin with his last meal? Is there a problem with his pump site? Is he getting sick? Did I miss a #$%@ bolus AGAIN!! Did he eat something and not tell me? I guess that last one is the worst because he's staring to feel it too. He'll see the number and say, "Now don't get mad, mom,"  or "You're not gonna like this,"  or "I didn't eat anything, I promise!"  So now I pushing that guilt and sick stomach on to him. He's 8. Just great.  

But here's the worst part. It's mostly my fault. I'm slipping up. There, now you know.

It's not intentional of course, but I'm just not on my A game. And how can I not be when those tiny little glass shards are traveling through my baby's blood stream?? But I've missed boluses. It happens. I don't really know why or how. It just does. It's dinner time. I figure out the carbs for his meal, I'm busy getting everyone what they need, I get him his plate, make sure he has checked his blood sugar. And then somehow, after all that, carbs counted and all, the bolus was never given! BG 511. OR, I did give it, but something went wrong with the pump and I didn't pay attention to the alarm, didn't hear it, and then didn't find out for another hour or two (or four) that he didn't get the full amount he should have. BG 378. Or how about those times when he takes a bath, and takes off his pump, and then comes out and eats dessert, and I dutifully have him check and bolus, only to find out later he never reconnected his pump. BG 450. 

Our diabetes online community (DOC) is such a huge network for support. A group to ask questions of, commiserate with, and just in general to feel like you're not alone. There are a couple of funny acronyms that we use that have meaning only to families with D. 

One is SWAG - Scientific Wild Ass Guess. 

You use that when you're trying to make your best guess on the carbs for something that's not easy to know like maybe a casserole or something homemade.  

Another is YDMV - Your Diabetes May Vary. 

It means each persons diabetes is different. One child may react to a specific insulin one way and another may react differently. One may have a hard time dealing with something like pizza while another may have no trouble with that but marshmallows cause their blood sugars to soar. YDMV.    

Well, I have a new one. I don't think it applies just to me. I know we all go through this from time to time. It's not a pretty one. I guess that's good because it doesn't stand for something pretty. 

SYDCMS - Sometimes Your Diabetes Care May Suck!!  

Mine definitely has lately.  Eleven BGs over 300 in the last 5 days. Six of those were over 400. Why is this happening? Not sure, but here are some guesses:

1. I haven't been keeping up with my logs. No logs means I can't see patterns and make    

    adjustments.

2. I haven't been sending in numbers to the endo like I used to. I don't think I need to do 

    this as often as I used to, but if I was having bad numbers, I would normally send them 

    in. See #1!

3.  We switched to a new infusion set - Orbit Micros. We are getting a lot of occlusion 

     alarms. I'm still trying to troubleshoot.

4. We just started a vial of Apidra to see how it works ??? 

5. I need to make some basal changes. See #1.

So, yes, imperfection. BIG TIME. And guilt. BIG TIME. And WORRY. BIG TIME. 

And just SYDCMS.   

BUT,  I know there is a flip side to this one and that is:

SYDCMR - Sometimes Your Diabetes Care May Rock!!  

I've seen lots of you there. You have inspired me many times before. And guess what, I've even been there myself now and then. So I know it's just a matter of jumping back on the wagon and getting it together again. D can just take a lot out of you. It gets you down, and gets OLD, and gets tiring! And it gets way too routine. I think that's a big part of the problem. It's easy to let things slip. I've let things slip. I've been imperfect. I know no one is.

But those glass shards . . . Ugggghhhhh!!!!

I hate my diabetes bag. There, I've said it. I'm sorry. It's one of those blue JDRF bags. We got it for free from the hospital I think. I so appreciate that they do that. It was invaluable to us as new D parents. They tried hard to make it a great bag, and yes, for the first year, it was pretty good. It had plenty of room to store things, several pockets. Even one in the back that was insulated. But now, after all this time, I really just can't stand that bag!

It's just so heavy. Do you realize what we have to carry in there? (I know some of you unfortunately do.)
Here's the list of what's in there right now:

 In the front pocket:
An empty test strip container full of my migraine pills
Another empty test strip container full of Jesse's migraine pills and allergy pills
A full test strip container for just in case we ever run out
4 Peter Piper Pizza ticket vouchers totaling 845 points (he's saving them up for something - not sure what.)
A tube of Extra Strength Tylenol
A pen and a pencil
A few Tampax
A tiny bottle of hand sanitizer
A small roll of medical tape (I have actually used this and a cut up baggie to hold EMLA in place when I was out of IV3000! Came in handy that day!)
A half-eaten bag of Skittles, a whole fun-size bag of Skittles, and a small Laffy Taffy
Josh's MP3 player
One tube of Blistex, one Carmex, and one some other weird lip balm
Josh's diabetes ID bracelet which he refuses to wear for long amounts of time because it's uncomfortable. (Need to get a new one!)
4 AA batteries for the pump.  (A bit of overkill huh?)
1 AAA battery for the meter remote (Underkill - yikes! Need to get another one.)
$1.75 in quarters (He's always asking for quarters for the machines in the stores)

In the main part of the bag:

1 Ziploc bag containing a crapload of bandaids (Would I say I have a plethora of bandaids? Yes, I would.), some IV Prep wipes, some alcohol wipes, and a couple of cough and cold strips.
1 Ziploc bag containing supplies for 3 site changes, some keytone test strips, a tube of EMLA cream, and a tube of Neosporin ointment
One sandwich bag that has various carb cheat sheets in it like for Mc Donalds, and other fast food places we go, or restaurants we frequent, also a one page sheet on what to do for low blood sugar if anyone else should need it in my absence
A Glucagon Emergency Kit
I sandwich bag full of Smarties, Skittles, Necco Wafers, etc. which may never get used because he doesn't like most of it! If we're desperate we have it I guess.
The little Calorie King book. Thinking about dumping that one. Never use it anymore but Jason does I think. I just use my phone now, and that damn little book is heavy!
2 juice boxes
About 10 used test strips hanging out at the bottom of the bag
1 travel pack of wipes
A small plastic container that holds about 8 crackers just for a low. If I don't keep them in there, they get crushed.
Another small platic container containing 7 syringes, a little tube of cake gel, some alcohol wipes, and some Laffy Taffy's (for some reason)

When we get ready to go out, I throw in there his blood sugar test kit with meter remote and (in the summer) my freezer insulated bag with the insulin in it. Right now I just get to throw the little insulin bottle in and go - yay!

 All of that adds up to HEAVINESS! Especially day in and day out.
 
And those damn straps. They won't stay on my shoulder. They're shaped weird. It's constantly slipping off my shoulder.

AND, it just looks frumpy. I don't need ONE. MORE. THING. making me look frumpy. I'm doing a fine job of that on my own thank you very much.

I think maybe there is a psychological thing with this bag too. Like the bag IS D. We are stuck with it. We can't go anywhere without it. We can't take the chance that we will be somewhere and he will have a low blood sugar and need to be checked or need his candy or juice. We can't be away from the insulin or shots just in case. What if we went into a bank and someone decided to rob it while we were there and held us all hostage? I know that's crazy but it could happen. We need that lifeline bag with us at all times. It HAS to go everywhere with us. EVERYWHERE. All the time.
FOREVER. You get the picture?

And sometimes I hate it so much that I just want someone else to bear the burden. Sometimes Jason is with me and he carries it then, but that's not often. But the worst is when I'm tired and I ask Josh to do it. "Can you get your bag?"  or  "Don't forget your bag."  And he does it. Every time. Without a complaint. Like he knows its his problem or something. His responsibility. And when I see him walking ahead of me with that heavy blue bag on his small back I feel so sick to my stomach because it should be me carrying that burden for him. He's carrying enough. And the guilt overwhelms me sometimes.

So yeah. I really hate that bag. I need a new solution. (That doesn't cost $100!)  Got any ideas?