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What They Should Know – Diabetes Blog Week Day 5

Diabetes Blog Week – Day 5

Our instructions:  “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.

Oh boy.  This topic immediately caused a nasty rant in my brain.  So much so that I had to put it aside and come back to it later, which means I didn’t get it posted yesterday on Day 5 of Diabetes Blog Week.

I don’t think the misinformation about Type 1 diabetes bothered me quite as much when it was just my husband.  After all, he’s an adult.  He can defend himself.  He can tell people to go climb a tree when they direct a ridiculous comment towards him.  But now, there’s a child involved.  And let me tell you, I can feel the steam coming out of my ears when someone says something stupid to him.  (i.e., random lady in store who says “maybe if he eats more healthy, diabetes will go away…”)

I know.  I shouldn’t expect every person to perfectly understand diabetes.  But that’s the thing, I don’t.  I just kindly wish people would keep their mouths shut when they don’t know what they are talking about.

I’m good if you want to ask questions.  That’s cool.  That means you want more information.  That means you care to learn.

I’m not good with inaccuracies stated as facts.

I guess if I had to choose one thing for people to understand, it would be that high and low blood sugar numbers are normal.  They can’t completely be avoided.  Their presence doesn’t mean mismanagement or poor care.

There are many factors that impact blood sugar.  Exercise may bring it down, but in some cases could bring it up.  Stress can bring it up.  Wrong carb count on restaurant website can lead to a major low.  Even if you perfectly count carbs and manage insulin intake, the resulting blood sugar may not be perfect.

I consider diabetes to be a “do the best you can” disease.  It will never go exactly as planned, but hopefully over time, there will be mostly good results and less of the bad stuff.

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Fantasy Diabetes Device – Diabetes Blog Week Day 4

Diabetes Blog Week – Day 4

Our instructions:  Tell us what your Fantasy Diabetes Device would be?  Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc.  The sky is the limit – what would you love to see?

I’m not going to be creative here.  I would really like it if my child and husband didn’t have to bleed so much.  My diabetes dream device would be a non-invasive method for checking blood sugar accurately.  Even better, it updates continuously.  No action required on your part to get the info.

I can’t lie.  The Medtronic CGM felt like a miracle when my son started on it.  However, the needle is better described as a harpoon.  I loathe stabbing my kid with it, numbing cream aside.  Once it is in, we can usually forget about it for 6 days.   But still,  I find the insertion very traumatic.  (kiddo doesn’t complain, but it really disturbs me personally).  Also, the transmitter is huge, so my husband won’t even wear his.  He cannot get past that part, even with all of the info it provides.

On a positive note, the CGM is pretty darn accurate, despite what you will read about Medtronic vs. Dexcom (note:  we have no means to compare against the Dex, because we’ve never used it).  It has saved us so many times from a low.  It definitely knows what direction blood sugar is moving and how fast.

So for now, I’ll take it and be happy about it.  In my dreams though, knowing blood sugar numbers involves no blood, no stabbing and is dead on right!

One Thing to Improve – Diabetes Blog Week Day 3

Diabetes Blog Week Day 3

Our instructions:  Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at.  Today let’s look at the flip-side.  We probably all have one thing we could try to do better.  Why not make today the day we start working on it.  No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!

This one was easy for me to pick.  One thing I would like to do better is help my guys dose their insulin BEFORE eating.  We do try to do this, but it is REALLY REALLY hard.  Partly because it requires planning.  Mostly because it is almost impossible to convince a hungry  person he should wait 10-15 minutes after calculating carbs and dosing insulin to eat.

When the little guy was diagnosed, we were given these instructions:

1.  Check blood sugar

2.  Dose insulin for food based on carb count, including any correction dose for high sugar

3.  Take the first two numbers of the blood sugar reading.  This is how many minutes after taking insulin you should wait to eat your food.  (for example, if blood sugar is 130, you would take insulin and then wait 13 minutes to eat)

The reason for doing this is that insulin takes 30-90 minutes to get working and even reach its peak in your system.  Taking the insulin before eating avoids blood sugar spikes after your meal or snack.  Ultimately, doing just this one thing can  help lower the A1C result, a definite goal for us.

Sounds great.  Simple to calculate.  Easy to recognize the benefit.  Difficult to implement in real life.  Especially with a kiddo who’s convinced he is “starving” and is watching his brother and sister scarf down their food while he waits.

So, this is what I’d like to improve for us.   I know with a little work we can get much better at this.

I’d really love to hear how this goes for others.  I’m sure we aren’t the only families struggling with this issue.

One Great Thing – Diabetes Blog Week Day 2

Day two of  Diabetes Blog Week.

Our Instructions:   “Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”.  But today it’s time to give ourselves some much deserved credit.  Tell us about just one diabetes thing you (or your loved one) does spectacularly!  Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes.  Nothing is too big or too small to celebrate doing well!”

Oh boy, isn’t the “hard on ourselves” part true?  Maybe it is a personality thing, but I doubt it.  I’m sure we all beat ourselves up when things don’t go perfectly.  But when I really stopped to think about it, there are some things my guys do amazingly well.

To start with, my son is awesomely brave.  At the endo office last week, we were filling out a research study questionnaire and it asked how often he felt stress as a result of having diabetes.  He shrugged his shoulders and chose “rarely” like it was no sweat off his back.  Now that’s one brave little boy.

Also, he works very hard to be self-sufficient with his own care.  It helps that he’s super-responsible and mature to begin with.  He checks his own sugar, weighs his own food (sometimes), knows how to read the carb count and serving size on a package of food, calibrates his CGM sensor and inputs carb count and correction boluses into his pump.  Cool stuff when you consider he’s only 9.  At his own request, he was even giving himself occasional insulin injections before he went on the pump.  (Yes, of course we oversee all of this activity).   This is great because first, it allows him to feel some control over these crappy circumstances.  Second, it has enabled him to do things that are normal for his age.  For example, go to “kids night out” at the rec center or stay overnight at a good friend’s house (I’m so blessed with a parent who is willing to text with me non-stop info about blood sugar numbers and carb intake).

My husband is skilled at estimating carb counts when we adventure into the unknown world of restaurants, carnival food, family get-togethers and the like.  After 16 years with diabetes, he just has this uncanny gut feeling.  Its funny, because I’m always frantically looking carb counts up on an iPhone app or the Calorie King book and if we are not in sync with our estimations, then I seriously reconsider what I was going to give my son.   His years of experience are usually right.

I most admire my husband’s positive attitude.  I guess I’m a bit of a hypochondriac complainer.  If I get a headache or I’m tired, I definitely let it be known.  If I had diabetes, I imagine myself to be quite the whiner.  With all of the ups and downs diabetes creates, it is really rare that you will every hear my husband say he doesn’t feel good.  He could have 350 blood sugar and still wrestle with the kids or tackle a project.

Oh..and my husband is also really good at using low blood sugar as an opportunity to eat something yummy.  (Sorry honey, I had to throw that in there..hehehehehe!!)

How Many Sets Can A Wood Chuck Change if a Wood Chuck Could Change Sets?

I was thinking today about insulin pump set changes.

We have to change infusion sets every 2-3 days.  ( “we” really means “I”…..hehe).

As fate would have it, both my guys started on one aligned schedule, but that only lasted a couple of weeks.  A kinked cannula or unexplained high blood sugars means an immediate set change, completely screwing up my carefully mapped out plan.

One day, I decided to calculate how this all adds up.

10 set changes per month for each super handsome guy = 20 insulin pump set changes per month.

That’s insane!

Now add the CGM sensor change for my little guy on 5 of those 20 days.  (Extra big needle so we push the limit and he wears each sensor for 6 days instead of 3).

Good thing I have this stuff mastered.  The insulin pump has nothing on us.

P.S.:

This week, I’ll be participating in the 3rd annual Diabetes Blog Week.  That means diabetes bloggers around the world will be blogging on a set topic each day of the week.  More information can be found here:  http://www.bittersweetdiabetes.com/2012/05/third-annual-diabetes-blog-week.html

Happy Reading!

Pump Fail

420…well, that’s fun.  (initiate instant mommy failure feeling)

We started out okay.

6am 114   (whooo hoo!!)

9am 235 (normal post-breakfast spike we cannot manage to overcome)

11:30am 165  (ok, I’ll take it)

1:45pm 306   (WHAT??!!??)   correction bolus

3:45pm 233 (well, at least it’s coming down)  correction bolus + snack bolus,  painfully wait 23 minutes before eating snack

5:30pm 420 (panic…breathe…retest in hopes of sugary fingers)…374  (darn, fingers not too sugary)    correction bolus

6:30pm 364   (panic again….injection with syringe…..change pump set after kiddo confesses pump dropped and yanked cord TWICE today while at school)

Hate having to change the pump set when I just did it yesterday   (ARRGGHH!)  …. but thank the lucky stars for numbing cream.

Now we wait….(mentally accepting neurotic mommy tendency that will drive me to check BS every 2-3 hours overnight…YAWN…zzzzz)

First “Almost-Perfect” Day

My little guy has been on the pump since January of this year.   So far, the experience has been great.  I will admit, I was a little overwhelmed when we went through the training.  So much information at once, sometimes with scary warnings…

“Don’t disconnect this way”

“No roller coasters”

“Watch out when going through airport security and riding on a plane”

“No cold insulin and watch those air bubbles”

etc., etc., etc.

It helped to know that hubby would be trying out the pump also, so they could go through it together.   Now, after several months, we have the hang of it and I can change a pump set in no time flat.

While the overall pump process was great, getting the settings right has been a rough road for my son.  Activity at school is so varied, one day he would be high, the next low.  The school calls me up to three times a day after he checks his sugar before morning snack, before lunch and before coming home on the bus.  Every day has been an adventure.  The worst part of it all was knowing what he was going through.  It may seem like fun to get out of class, but it stinks to miss lunch with your friends or to be just plain different.

But FINALLY, we had an (almost) perfect day.

Wake up:  116

Before morning snack:  124

Before lunch:  109

Before coming home on bus:  176

I’ll take it!  I felt like throwing a party.  Hooray!