Saturday, May 30, 2020

How is an Insulin Pump like a Pandemic?

So I'm a fairly new to type 1 diabetes parent.  My son was diagnosed at age 10 less than six months ago.  I'm also an educator during a global pandemic that has closed schools across my country.  I've been working / teaching from home since March 13th and it is now May 30th.  Our county is on a stay home stay safe order and while other parts of our state are moving to slightly fewer restrictions, my county didn't meet the minimum criteria for that yet.  Certainly, I'm not an expert at any of these things but I have come to an understanding with my own emotions at least.

It seems there are a lot of powerful feelings related to the pandemic and the resulting recommendations.  There is fear, loneliness, anger, regret, resentment and the whole gamut.  I had a conversation with a friend who said she'd just rather die than keep living with all these restrictions.  She said it was "no kind of life".  

I talk to educators and parents every day.  They are tired, they are frustrated, they are done.  They want life to go back to normal.  Kids back in school, economy open, going to work, coming home, enjoying their time off, going out on the town and all that comes with a healthy world.  

Many want to blame someone, to point a finger at another person and say "you are doing this to me and it isn't fair."  To feel that this situation is being forced upon them (which it is) but they want a person to be responsible.  I understand.  If a person, or government, or conspiracy, or whatever were behind this then it can be changed, channeled, fixed.  I have a lot of empathy for their feelings and their struggle. They want someone they can call and tell that they need X,Y,Z for their quality of life. They've tried to be good and follow the rules but they don't want to wait anymore.  

On a separate and yet related note.  We've been waiting for our son to be approved for an insulin pump by meeting all the requirements of the insurance company which included being six months post-diagnosis.  That means we should be able to get started on pump therapy in June. We've been working with our medical team and the pump company to check off all our requirements.  There were concerns about the inability to attend training during the pandemic and how could we meet those requirements at a time like this but these issues have been resolved and creative ways have been found to meet those.  We thought we had things set up and ready to go and have been quietly marking the days off in our minds to a time when our son's quality of life & diabetes management would be improved as he moved from multiple daily injections to insulin pump therapy.

About three weeks ago, I got a phone call from the insulin pump representative.  The insurance company has suspended new prescriptions until the next update on the pump we've been working towards.  We were planning to get a pump at the beginning of June and instead we may have to wait until the end of July or beginning of August to get started on the pump.  

I felt all my feelings about this.  Anger, resentment, sorrow, and exhaustion.  I want to be angry at someone.  I want someone to blame so I can call that person up and tell them how important this thing is to me and my family.  How it will make our quality of life so much better.  How we've been struggling and waiting for this to make it better.  We've tried to be good and follow the rules and we don't want to wait anymore.

So How is an Insulin Pump like a Pandemic?

Maybe you already know what I'm about to say here.  The pandemic SUCKS! Waiting for an insulin pump SUCKS!  Yes that is true on both counts but it isn't the only way these two things are alike.  The insurance company won't let us have an insulin pump!  The government won't let us live our lives! I hear these statements more as demands in my head as I read them back.  These aren't really the truth of the situation on either count.  Does it change if we ask them as questions...Why won't the insurance company give me an insulin pump?  Why won't the government relieve the restrictions?

If I assume BEST INTENT then the answers are the same.  Waiting SUCKS but it is necessary for the greater good. I'm not knowledgeable enough to make all the decisions because I can't be knowledgeable in everything.  I have to rely on experts. What has the greatest positive affect on me may not be best for the majority.  I have to rely on the systems and structures that are part of my country; things I've had a vote in. Are all the elected officials people I chose?  NOPE but I have faith that the system will keep the greater good going.  Maybe I'm naive.  I know an individual person can be selfish, I'm proof of that all on my own.  These people, in these positions, are working under a set of guidelines meant to account for the most positive outcome for the majority.  

We have leaders on purpose whose job is to work towards a greater good.  My medical providers and the insurance company are also working towards a greater good.  In order to work towards a common good that supports a majority then...


I've talked this over with some of my very close friends and we all come to the same conclusion.  We don't always get what we want right now, in this moment, even though we may be good and deserving and doing all the right things because we live in a society and a community.  This is HOW I support my community.  Vote, work, try, live, laugh, love, accept, empathize, and assume best intent.

Again, I know it seems naive. I know not every human in a position of power is putting the greater good in the forefront of their mind/actions.  I know the insurance company has a bottom line.  I choose to believe most PEOPLE are good and I choose to believe that those in positions to work for the good of society will do so.

If our leaders threw open our world today and it was too soon the losses would weigh on all of us for the rest of our lives.  

If the insurance company ignored their policy and it had a negative impact on an already compromised group's health we would hold them accountable.

Our community will eventually move forward with a lessening of restrictions and my hope is that it will be well timed and the cost won't outweigh the benefit. My son will get on insulin pump therapy and my hope is that the cost won't outweigh the benefit.

I'll wait.  I'll do what I can.  I'll check my privilege and entitlement and trust in the best intentions of those who are meant to advocate for the welfare of the whole community.  I don't really have a choice in this waiting or how long it will take but I always have a choice.  I can choose to make it miserable and filled with anger and resentment or I can choose to make it a moment of grace, patience, love, and acceptance.  In a life that may last 100 years, this time will seem but a moment when I'm looking back.  I'd like that moment to be one I'm proud of.

I appreciate my life in all of its highs and lows. 

Monday, May 25, 2020

Insecure CGM

"I think it's just insecure mom."

This is what my son tells me as his dexcom asks for calibration, again.  What a crack-up he is.  He has the greatest attitude about all of this.  When we got our diagnosis in December we knew right away that we wanted to take advantage of the option to have a continuous glucose monitor but we had to wait 30 days.  It actually took quite a bit longer than that to get everything situated with our insurance company but thankfully we worked it all out.  

I'm frequently amazed at how quickly we humans can get accustomed to new situations.  We haven't even been handling type 1 diabetes for 6 months yet but it has fit itself into our routines and our lives and I have to make a conscious effort now to recall how things were before (most of the time).  Sometimes I do feel frustrated by the inconvenience of it all but then I remember that my child gets to live a full and productive life and that wasn't always the case for people with diabetes so I quite my whining.  

So we've been using the dexcom for several months now and are on our seventh session.  This time though our dexcom was struggling for some reason.  It started as soon as the session warm up ended and the alert went off asking for a calibration.  My son and I looked at each other in confusion.  We do sometimes calibrate it on the first day because we find it reads low for him and we don't like to treat a low when he is certain he isn't low.  So we shrugged and giggled a bit about how it was just anticipating what we were going to do anyway and we calibrated.  No big deal.  

Ten minutes later my son is back out with another calibration alert.  Hmmm. Okay, we calibrate again and the dex and finger stick are reading within 10 of each other so I put it out of my mind.  For about an hour and he's back out.  That first day I got so frustrated with it which is silly.  The G5 required calibration but we'd come into CGM with the G6 and have never known anything else.  It doesn't require a calibration unless symptoms aren't matching the reading but suddenly we're doing finger pokes all day which is what I wanted to avoid by getting a CGM.  I even looked for a way to turn off the calibration alert but nope, can't find it, have to ignore it or do the calibration.  I do NOT want to teach my son to ignore alerts so we calibrated over and over again.  The numbers were always pretty close; nothing of concern. 

The next day it asked for a couple of calibrations and I reached out to an online community regarding this.  Many other people said sometimes they get a faulty sensor or their dexcom doesn't read well when the child isn't drinking enough.  We haven't been on the sensor long enough to have any extra supplies.  As a matter of fact, they will be sending us our next 3 month supply when we are on our LAST DAY of my existing supply (and due to insurance I can't get this any faster?). So I didn't want to change the sensor early.  Finally by day four it had fallen into a pattern of wanting calibration once a day at around bedtime.  By day 7, as I was putting my son to bed only to make him get up and wash his hands and poke his finger, I said "sorry about this dexcom." 

My bright, intelligent, and funny 11-year-old responded "I think it is just insecure mom."  

I giggled and said "What do you mean?"

"You know.  Oh no, what if I'm not the right number? Maybe I better check? Fingers crossed.  Hopefully I'm good?  Am I, am I?  Okay, I'm good.  or am I?"

Funny kid.  Thankfully this sensor session ended and we put on a new one.  It has been three days and hasn't once asked for a calibration.

Wednesday, May 6, 2020

Birthday Diabetes!

Nighttime Highs & Lows

This is my son's first birthday with type 1 diabetes.  He is still sleeping this morning while I have been up for two hours sipping coffee.  Incidentally, I was also up for two hours last night but I wasn't sipping coffee then.

I am so thankful we have the Dexcom continuous glucose monitor that lets me "follow" his blood sugar on my phone.  I can crawl into my bed each night and know that I don't have to check on him because my phone will let me know if something isn't right.  I said I don't HAVE to, I find that I do stand outside his room peeking in at him several nights a week.  Having a newly diagnosed type 1 is like getting a new baby - you pretty much are fiddling with the child every few hours and when things are finally settled and good you watch them sleep.

Well last night the thing that wasn't right was he started running high.  This is a pretty rare nighttime occurrence for him; low is the usual play.  I don't know if his insulin just wasn't covering correctly, or maybe we didn't get a good injection spot but it was like we hadn't given him insulin at all for his bedtime snack.  Up and up he went.  I have my phone set to alert when he is over 180 for 30 minutes although that isn't a number that concerns me much these days.  Half hour later he was over 200 and half hour after that he was over 250 and still arrow pointing up.  I did peek into his room and he was very rosy cheeked, all his covers were kicked to the foot of the bed, and his fan was aimed right at him...poor guy!

Since we don't have an insulin pump yet or an intelligent insulin pen we have to wait 3 hours before giving more insulin to avoid the "stacked insulin" low.  But I did wake him last night and deliver an extra insulin injection to get those numbers back in range.  Not a great sleeping night for me but thankfully the extra injection did the trick and he was back in range about forty minutes after I gave it.  Then I slept poorly for a while worrying that he would be low next but he held a steady line for the rest of the night.

The night before last I was up for two hours too.  That was a more typical event for us, the dex woke me at about 11:30 pm with a low alert.  I woke him up and gave him 15g of carbs in the form of apple juice.  Then I waited and watched and waited some more.  It was about 12:15 when his levels started coming back up; I knew they would so I avoided the urge to give another 15g when things didn't turn around right away.  It is funny how much we've changed our management since those first few nights home.  Originally I would give 15g, wait 15 minutes, and give more carbs if his numbers hadn't turned but what we've found by looking at our data over the past few months is that he takes a long time to digest.  So if we follow the 15/15 at night we end up taking him from a low to the upper 300s about 75 minutes later.  We have to be a little more patient which is hard when your phone is beeping and the number is just sitting in the low range and you are a worried parent. 

Happy Birthday & Celebrating = Food?

As I was saying, my son is turning 11 today!  Such an exciting time for him.  He is having a quarantine birthday since our state is still on "stay home, stay safe" orders.  No friends over, no going to the trampoline zone, nope, nope, nope.  He'll get a quarantine birthday story & maybe I'll get him a t-shirt about it. Stores here have been closed for weeks and shipping from online options is delayed but we have our fingers crossed as his gift says it will arrive today (after being delayed 3x). 

Since N's diagnosis I have become VERY AWARE that we use food as a celebration in our family.  I knew this before but it is very apparent now that our celebrations and joyous times are often tied to sweets and foods.  I've been struggling with this over the past five months as we've gotten more accustomed to life with type 1 diabetes.  Cupcakes, cookies, brownies, root beer floats, french fries, chicken nuggets, fast food, eating out, bread, rolls, biscuits, yep - we like food rewards in our family.  Makes us happy but for one member of our family it doesn't always make him feel good.  Today we will try to balance our food-based celebrating with other ways of celebrating.  We've done this with some success at each celebration since our December diagnosis.  I'm sure as the years roll by we'll be less and less food driven and create new norms but this year it has been difficult to figure out what to substitute in for our previous habits.  

Today we are going to have home-made air-fryer mozzarella sticks and veggies for dinner to keep our carb count low so we can add in a cupcake or two.  We have to get creative due to Covid-19 anyway so we are adding chalk highlights to our hair for fun and if the weather cooperates we'll be doing some tie-dye in our backyard!  Here's hoping this birthday is memorable for being unique and fun!

(At bedtime my son says "today was great! wasn't it mom?" Yes it was)