Thursday, September 11, 2014


Chronic. Acute. Disabled. Disease. Life threatening. Lifetime. Pain.

I'm starting to get it.  I'm starting to understand.  Chronic pain was always something I felt could just be incorporated into your life with little change.  Acute to mean meant something serious.  But I get it.  Dealing with my herniated back has caused me to contemplate how I view these things.  It's helping me to empathize with my husband and son.  Every moment has to be done with awareness.  You have to plan and think about your movements or you will cause excruciating and debilitating pain.  From the simplest things like taking a walk or just getting up in the morning you have to decide to do it.  For my husband that means just getting out of a chair takes work.  For my Sugar Bear that means living each day.  We have to be here, be awake to keep him alive.  We have to use our sleep deprived brains and make them work.  We calculate carbs and hope we don't make mistakes.  A mistake could cost us something precious.  So we second guess and triple guess everything.  We check and check again.  Did we count too many carbs and give him too much insulin?  Too much insulin could result in a low that could cause seizures, brain damage, coma, and death.  Did we not count enough carbs and not give enough insulin?  This could result in highs that could lead to damaging his body, ketones, and DKA.  I question everything.  "Did I just give the evening insulin?  Did I use the right carb to insulin ratio?  Did we count the carbs properly?  Is he sleeping because he's tired or because of a low or high?"  Check to make sure he's breathing each and every morning.  So thankful to have him wake from slumber.  It's exhausting, challenging, scary, awful and at times beautiful.  The alternative I can't even contemplate.  Every shot saves his life.  Every blood sugar test makes it possible for him to have a happy, healthy, long life.  A life worth living.  But every day is a fight.  It's not manageable or controllable.  Everybody is different in how they react to stress, food, medicine.  Sugar Bear could eat the same thing at the same time every single day and have a different blood sugar each and every time.  Sometimes high, sometimes low, sometimes "perfect".  So we fight.  We live.  We are so grateful for insulin that let's us do this, because without it...well, I just can't go there.

We had our three month endo appointment two weeks ago.  I really thought his Ha1c was going to be higher based on the numbers in our logs.  Amazingly it was a tiny bit lower.  We talked about nutrition, exercise, eye appointments, flu shots, cgms, and ketone meters.  I want Sugar Bear to have a CGM even more than a pump but he's not ready.  And it is his disease.  His life.  We did get the blood ketone meter so now he won't have to pee on a stick.  We're getting ready for cold/flu season.  We have to be prepared.

Same day we had the endo appointment Sugar Bear had an ortho appointment.  It went well.  One of the dental assistants made a point of telling me she was donating to JDRF.  A stranger that Sugar Bear has affected.  We have a walk to raise more funds in October.  I hope my back can handle it.  We plan.
So we keep on walking.  We keep on working.  We take each moment step by step.  There is no alternative.  There is no day off.  There is no break.  We do it consciously. 

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