Tuesday, July 22, 2014

CWD 2014 ... Aha! Moment

Here is my crazy-T1-mom confession ...  It’s not the lows that scare me and keep me up at night it’s the highs! 

I can’t even count the number of times I have been told stories about so-and-so’s great-aunt who lost her toes because she had diabetes.  Granted she had Type 2 diabetes … but, I figure, she probably was diagnosed later in life, in her 50s, and lived with it for maybe 20 years before she started suffering from complications.  20 years!  That’s not very long really.  Ben was diagnosed when he was 6!  (I don’t even want to do the math here.)

So when Ben’s blood sugar is over 200 I go a little bonkers.  And his BG is over 200 a lot!  Every time I see a BG over 200, I start imagining all that extra glucose floating around his body, banging up against his eyeballs, kidneys and toes.  And as I watch those stubborn highs continue to stay high, I think crazy thoughts like, “Is this stupid high taking away another day of his life?”  Seriously, a 300 or a 400 can send me over the edge.  I start obsessing about his basals, carb ratios, and sensitivity factors.

Now here is the thing, I have been told often, “Our kids diagnosed today with T1 can live a long healthy life.”  I have been told, “If you manage the disease well there is no reason to fear acute complications.”

But how can that be true?   Every time someone made that statement it felt like a lie.  It just didn’t make sense to me.  The logic didn’t fit.  High blood sugars whether caused by Type 1 or Type 2 are bad, really bad.  I had to be missing something …

Then came the 2014 Children’s with Diabetes conference.   And that is where I had my Aha moment!

I believe it was on Friday of conference week, I was attending one of the last sessions, and honestly I don’t totally remember what the main topic was, but somewhere near the beginning of the hour one of the presenters said, “Your kids diagnosed today with T1 can live a long healthy life.”

And I thought to myself, “Yeah, right … Liar!”

I am pretty sure, I just thought it, and didn’t say it out loud … because then he explained, “Just so you know, your kids do not have to suffer the same complications your friend’s grandmother with Type 2 suffered.”

Now he had my attention … he continued to explain (and I will paraphrase here) …

When you are diagnosed with Type 1 diabetes, your pancreas was working, chugging along and then all of a sudden it stops.  You can live a few months or so like this, but eventually you make your way to the doctor and get the diagnosis, “You have Type 1 diabetes.”  Now with Type 2 diabetes, the diagnosis isn’t quite so abrupt, it’s much more of a gradual decline.  And that decline can happen over years and years, and it can be measured decades!  And during those decades your blood sugars are rising and sadly causing damage.

Aha!  It’s the pre-diabetes I was missing!

This all seemed to make sense now.  I could put all the logic pieces back into place.  There is no conspiracy of liars.  Ben really might be OK.  Next time I saw Ben’s BG cross that 200 line … I don’t have to freak out!  We need to just keeping fighting the good fight … a fight that suddenly seemed fairer.  Us, manned with our fancy technology, conferences, textbooks, and doctors, might just be able to help Ben live a long and happy life despite his diabetes.

Deep breath

Exhale

The presenter dropped this nugget of wisdom and then quickly moved on to his real presentation (which I still can’t remember) but I did quietly think to myself, “Thank you.”

4 comments:

  1. Wow, I had never heard of it like this before - but yes, it makes so much sense. Maybe I'll stop hating my own highs so much now too (although I fear it's much to ingrained in me at this point).

    #dblogcheck

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  2. Lots of kudos just being a great mom of a kid wioth diabetes! I've been a t1d for 42+ years, and I'm suire my diabetes kept my mom up at night as well! Back in the 70s of course, we didn't manage our diabetes as well as today. We didn't test very often, and I'm sure my blood sugar was high a lot! I'm 53 now and in great shape. Riding my bike 100+ miles/week and doing well.

    I say this simply to affirm you and the job you are doing as a dmom, but I think you can relax a little as well.

    BTW, my story and tribute to my mom is on my blog here: http://michaelcmack.com/2014/06/27/tribute-to-a-diabetes-hero/. I think all dmoms are heroes!

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  3. Wow, that's a great explanation! Growing up, the doctors always told my parents to fear the lows, so I always hovered in the 200's (at least from my recollection) and I'm going on 20+ years with T1D and so far no complications (knocking on wood currently). I think as long as you treat the highs in a reasonable amount of time and don't hover there for days/weeks things will be fine!

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  4. I suppose in the grand scheme of things, we do have it a little bit better because our diagnosis is rather binary. Pancreas working? Yes/No. Diagnosis complete! #Check #DayLate

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