Rant

I was recently talking with my best friend about all the stress of the holiday season.  We also discussed both having a year of "firsts".  She's having a year of firsts without her father, who passed away in February.  My firsts are diabetic related.

Diabetes has become my life.  It is something that is on my mind always.  I either take a look at how many carbohydrates are in food; look at the CGM app on my phone to see what Trey's sugars are; plan out what different food choices I can make depending on what Trey's sugar is; how many carb snack he can have for how high or low he is running; knowing where his kit is; looking at the calendar to see what days we change out his sites; etc.  It's hourly ... Sometimes many times an hour.  It's in the middle of the night, when I roll over and grab my phone to check his Dexcom.  It's always ... Always on my mind.  I don't expect anyone who is a non D parent to understand, and I'm not searching for sympathy, I'm simply saying this disease is a jackass.

A very good friend of mine recently sent me a photograph she found of a little boy, sitting naked (backwards) on a rock staring out into the ocean off of Hawaii.  He had a Dexcom CGM on his arm.  I smiled, then my heart broke a little bit.  I know that mother's agony.  I replied to my friend, thanking her for sending it to me and then started ranting ... I hate diabetes.  I love the technology that diabetics have now, but I pray for a cure.  I hate that insurance companies don't think they need to cover things such as a pump or a CGM.  I hate that the cost of insulin has skyrocketed to an astronomical amount that some families cannot afford.  The damn world is so un-fucking-educated about diabetes and it pisses me off.  Sorry for such language ... But it's so true.

Today I read the obits in the local newspaper and I see a person in their low 30's who passed.  Intrigued I read the entire obit, even though I did not know the person.  Then I see ... "Diaganosed at age 16 with diabetes" and I felt like I was going to puke.  It does not say that the young man passed from his diabetes, but it still makes my heart hurt.

Today Trey came home from school with sugars in the 90's and an arrow down on the CGM.  He has a sugar free Popsicle.  He continues to decline, now in the 70's, so a 'real' Popsicle is had.  Current sugar 1 hour after the Popsicle is 182 with an arrow up.  The first Popsicle had 0 carbs.  The second Popsicle had 8 carbs - 5 of which were sugar.  Over 100 "points" up in an hour from 8 carbs.  Maddening. I hate diabetes.

I hate waking my child up at 4am to do a finger poke and force him to drink some Fairlife chocolate milk.  I hate seeing his sugar go over 300 when he's at school because his morning was too packed full of exercise and it didn't agree with him.  I hate having to tell him "no, you can't have the bun" when he wants a hotdog at the Wings game.  I hate that he is too embarrassed at school lunch to have his nurse administer his insulin in the gym, that he wants to make it a private affair where the other kids can't see because he doesn't want to answer questions.  I hate feeling like my husband and I cannot go out for a simple supper date without our children because there is no one that really knows how to take care of Trey's needs.  I don't even want to ask someone to watch him, because truthfully it's a lot for a person to understand even though Trey basically knows the in's and outs of the disease and pump himself.  He has great self control.  As I said before, I hate that insurance companies don't want to cover the CGM as they don't find it medically necessary to manage the disease.  Thank God our insurance did cover it, but it's so very wrong for them to think it's not a NEED.

End of Rant