Honeymoon schmoneymoon

IMG_1094When Caleb was diagnosed, we were told he would have to wait at least six months for an insulin pump.  We were told insurance would not cover it until we could show that injections weren’t working. I have since heard that some doctors will not prescribe a pump until a year after diagnosis because they prefer their patients not start until the honeymoon is over.

The good news is, Caleb did not have to wait to start pumping.  He had his first Pod on about 3 months after diagnosis.  The not so good news is that the first year and a half of pumping was a struggle.  Well, diabetes is always a challenge.  We still struggle. But for that first year and a half, stress and confusion were abundant.

I attribute this to a few factors:

(1) achieving tight control of a diabetic’s blood sugar is plain and simply hard and I was new at it,

(2) there is little in life that I haven’t been able to conquer that I really wanted to and for a long time I believed I could achieve consistently good BGs simply by putting in time and effort,

(3) using only fast acting insulin is a very different and more sensitive therapy than one with a longer acting insulin which seems to soak up  some of the “extra” variables, and

(4) we were managing insulin dosing with an erratic, fickle pancreas that produced some level of insulin without rhyme or reason and without notice, aka: the honeymoon.

Caleb’s honeymoon and its subsequent deterioration has never been medically tested. However, over time, I saw gradual changes in two areas.  His overall dosing would creep up and plateau and creep up and plateau.  Each time it flattened out, I would say, “Okay, the honeymoon is over”, only to be proven wrong and go through it all over again.  The other thing that changed was the reaction Caleb’s BG had to various foods. Every once in a while a food that never before posed any issue would cause erratic blood sugar readings. When first diagnosed, there were no problem foods at all.  Even pasta and pizza were just like everything else.  Pasta was the first to cause problems.  Then gradually pizza and chinese food joined the mix.  I would get the dosing down for them, only for it to change.  Then anything processed or fried started to wreak havoc.  Chicken fingers and fries became cursed foods.  Later ice cream and others.

Nights were by far the hardest with which to deal.  Between the hours of 8PM and midnight, Caleb’s insulin dosing was anyone’s guess.  We would go through periods of dinners of protein and veggies for weeks in order to figure out his basal pattern, to no avail.  His insulin needs would go up, up, up then down, down down. Up and down; high and low.  I had different spreadsheets for his basals, his carbs, his BGs.  I tracked his corrections and treatments.  I mapped his dosing and BGs by hour for any “challenging” food every time he ate it.  I even had a legend detailing various foods and their dosing “exceptions”.  I am a finance person.  I am accustomed to trends and analyses.  If I analyzed this long enough, and in enough detail, I would solve this puzzle. Or so I thought.

Then, when I thought it could not get any worse or more erratic, the bottom fell out.  Over just a few months, his basal TDD went from three units to six and then eight.  The breakfasts of oatmeal or Costco bagels that had been such friendly alternatives were now added to “the list” of foods.  All the rules had changed and things had to be relearned.  It was like going through diagnosis or pump start all over again.

Initially, each time Caleb took what I call another “step” out of the honeymoon, I would feel sad.  I would think his pancreas had completely failed and I mourned for it.  Of course, I was always wrong, and it would take another, albeit smaller, gasp for life and peter on.  We went through this so many times, that by the time it did go completely kaput, nearly two years after diagnosis, I was relieved.  With so many variables to manage when caring for someone living with diabetes, I was happy that the unpredictabilities a schizophrenic pancreas pose were no longer among them.

So perhaps, for some, it is wise to wait a year after diagnosis before pumping.  However, despite the grief I believe it posed for us, I am still pleased with our decision to start pumping quickly and would do it all over again.