making sense out of nonsense

Type 1 Diabetes some days makes absolutely NO SENSE whatsoever…

 

yet – we try to make sense of it anyway – try to put the puzzle pieces together and make good decisions with the information we have..

 

SO MANY things done throughout Eden’s day require a decision – either from her – or from me – in relation to her D management…

 

Eden is of course on the front lines and I am watching from the sidelines – she doesn’t look at the big picture – she often doesn’t even always look at the immediate future or implications that her decisions are making..

 

We have had a VERY ROUGH few days .. unexplained highs, unexplained lows and pretty much a huge roller coaster of blood sugars that just do not want to be managed… her lows have required copius amounts of sugar to bring her up and treating the highs have just brought her crashing back down…

 

24 hour time period of blood sugar craziness

 

It has been very hard to know exactly what to do… The thing is we can do the same thing every day and never get the same result so it is VERY difficult. Trying to teach her, give input and instruction based on previous experiences is ongoing and an every day thing and she doesn’t always want to hear it. Eden is impulsive and quick to push buttons without thinking it through.. and sometimes pushing those buttons (ie: giving herself insulin) can have HUGE consequences…

 

case and point – this happened this morning.. 

 

5.57 am – D-dad was up and tested her just before my alarm went off at 6am.

• BLOOD SUGAR – 89
• YAY – pretty darn good!

 

I got up and was about to jump in the shower when I noticed on my Pebble that her blood sugar was dropping.. I watched and waited a few minutes before heading to her room.

 

6.20am

• BLOOD SUGAR – 61
• grab some fruit pieces – have her eat them and try to get her up for the day

 

 

6.47am 

• try for the 4th time to get her out of bed – tell her she needs to test again BEFORE she gets in the shower
• BLOOD SUGAR – 189

 

 

SAY WHAT ?!?!?!

 

Now EXPERIENCE and thinking about that number – I KNOW that it is very unlikely that her blood sugar jumped that much in 27 minutes.. I ask her to WASH HER HANDS and re-test..

 

She argues with me –  and yells at me ” MOM – I am not low !!! … ”

I stand my ground and she washes her hands and re-tests…

 

6.48am

• BLOOD SUGAR – 48
• yup … just what I thought…

 

 

 

This is not about WHO was right – Because we have to make sense out of nonsense so often and because I was paying close attention – I KNEW that 189 just could not be right..

It also goes to show that this oversight could have had a TERRIBLE OUTCOME..

 

 

A blood sugar of 48 is pretty darn LOW…

• She did NOT feel low… 
• She was about to give herself insulin…
• She was about to go jump in the shower…
• Hot water speeds up the rate of adsorption …

 

NOT GOOD… 

 

If I was not standing RIGHT THERE and she gave herself insulin (by the quick press of a button) when she was actually only 48 – and THEN jumped in the shower ?!?! The fact her blood sugar was still dropping – she would have been in trouble FAST and more than likely started to pass out in the shower.. HOLY MOLY – this is the stuff my nightmares are made of…

 

 

Insulin gives her life every single day –

but it could also take it away in the blink of an eye..

 

 

no rhyme. no reason. T1D life.

let me preface this post by saying…

 

this is not a poor me sob story… just telling it like it is.

this is the life we live dealing with this disease. it is meant to educate the public on the Type 1 Diabetes life. 

this is what people don’t see or understand. 

maybe if more people see it – they will realize just why we so desperately need and want a cure. yesterday.

 

Parallel Universe ..

 

On Saturday something VERY strange happened…

It felt like we were in a parallel universe or we were being pranked.

 

Eden’s blood sugars were in PERFECT range the ENTIRE overnight hours on Friday

(even after a birthday party and pizza) and almost the ENTIRE next day?!?!

 

• I guess that is what happens when you are in the car for hours – are trapped together and can monitor exactly what she is eating and dosing…
• I guess it means we are onto something with her insulin settings and I don’t need to make the changes I thought I did

 

We had done an experiment last week so we could try to pinpoint the issues with her spiking blood sugars at school. Eden usually makes and packs her own lunch for school and I don’t always know what she is eating. We needed to know WHY she was spiking so drastically so I wanted her to eat the same snack in the morning to see if there was a pattern. On day 3 – we were still seeing ridiculous spikes, so we switched the snack. On day 4 – different snack – same problem. Time to make some changes…

 

Thankfully – Being pranked on Saturday also meant that the truth came out and she is spiking so high at school because she “might” be forgetting to give herself insulin.. 

 

Today is Monday – it is a holiday so she is home from school and I know exactly what she has eaten.

Guess what – PERFECT – IN RANGE blood sugars.. ***

hmmm….

extremely frustrating but satisfying at the same time 

 

It is now glaringly obvious that forgetfulness is the issue… You would think it would be an ingrained habit by now.

• test your blood sugar
• count your carbs
• give yourself insulin
• THEN put the food in your mouth

 

When surrounded by distractions – in the classroom – with friends, it is obvious she needs some gentle reminding.. Every now and then, forgetting insulin really isn’t that big a deal and completely understandable. A habit of NOT giving insulin is a problem and something we need to nip in the bud.

 

Now the question…. 

• Set an alarm reminder on her pump? 
• Set an alarm on her phone?
• Set an alarm on her new Pebble watch?
• Text her a reminder?  that she will now SEE on her watch and not miss because her phone is on silent?

 

I really don’t want to be that nagging mother – but I’m pretty sure, that the lack of giving herself insulin – or giving it to herself 30 minutes later (after she remembers that she forgot) is probably contributing to the LOWS she is consistently having in the afternoons at basketball practice…

Decision made – Alarm on Pebble

Need to tackle one issue at a time and I believe this is the place to start..

 

*** CASE AND POINT ***

Eden just had friends come over – her blood sugar has been PERFECT all day. I notice it rising, rising and rising…

I find her, in her bedroom – eating a stash of chocolate rocks from Christmas with her friends (that I didn’t even know she had). I question her and she DID NOT give herself insulin…. ?! Wearing her Pebble – getting the same warning vibrations I am getting – but still too distracted to give herself insulin. Obviously the above plan will ONLY work when eating at planned, scheduled times. OMG – these teen years are going to send me crazy – shoot me now …  😩

 

 

** Also, for those of you that were curious – Eden’s Pebble watch arrived and was set up just in time for her to attend a birthday party on her own Friday night. (as posted on the Facebook Page) I had to step in and contact her a few times because her blood sugar was dropping rapidly and I wanted to be sure she was paying attention. I knew she was running around and exercising and it could become a problem quickly. She handled herself well and we even celebrated a “perfect” 100 together when we pulled in the garage after the party 💯

What a Doozie …

 

WOW – yesterday was quite the day..

A day you would typically reserve for a Monday ..

As you know – I was expecting Eden’s insulin pump to arrive by 10am yesterday. 

 

Yeah – didn’t quite go as planned….

 

6.45 am – First thing I did when I got up was check the shipping status – everything was on track and I stayed home to be able to greet the delivery driver.

8.45 am – I checked the status again and there was a notation that was NOT there earlier in the morning, that severe weather had delayed delivery. It was SUPER foggy yesterday morning, so I was not the least bit surprised – It just meant it would be to our house after the promised 10am time. OK – I can deal with that..

9.30 am – Another hour or so ticks by and I check the status again – I was happy to see that the package was at least now in California and relatively close by (maybe a 45 min drive away)

12.30pm –  Another couple of hours or so ticks by and I check the status again

 

This time it now indicates the package is EVEN CLOSER to our house..

I’m so happy, but then I see another notation that WAS NOT THERE earlier…

 

Due to weather it has been rescheduled for the

NEXT BUSINESS DAY…

 

NOOOOOOOOOOO..

 

 

Seriously, the package was SO CLOSE – but I was going to have to wait until tomorrow?

NO – this could not be happening… 

 

I decide to go to UPS website and see what could be done about it.. I found out I would be able to pull the package from scheduled delivery and pick up at will call .. YAY ..

 

• Tried to do it online – made it all the way through the steps and I got an error. awesome
• Tried to do online chat – was having trouble getting a connection.
• Tried a different browser – said online chat was not available
• Went back to original browser and finally got connected with a customer service rep.

I explained the scenario – said it was extremely important medical device and needed it ASAP. Could they please put in the request for me to pick up at will call since I was unable to do so online.

Yup – sure…

took forever – not sure she really knew what she was doing

after it was all done – the request was submitted to pull the item from transport and she decides to tell me that it will be ready to pickup at will call THE NEXT DAY..

WHAT ?!?! Are you kidding me…

I had said on MULTIPLE occasions that the reason I needed it ASAP was because I didn’t want to wait until the NEXT DAY..

I politely, but very firmly,  informed her that she should have said it takes that long to organize will call pick up BEFORE she submitted the request. good grief! She KNEW I was wanting to pick up the item ASAP.. I understand weather delays – I was not upset it was delayed. I was upset that she didn’t advise me it would be better for the package to just be delivered as scheduled.

 

Meanwhile – whilst chatting with UPS online – I had been simultaneously watching Eden’s blood sugar climb and climb and climb into dangerous double arrows up HIGH again.

Can you say STRESS… ?!

It was approaching lunch time at school – Eden and I usually text back and forth – but of course, today,  she left her phone at home. She had impressed me that morning by calling from the teachers office after PE to let me know. (and her BS number) YAY Eden..

12.55 pm – Trying to sort things out with UPS – the rep assured me she would contact the facility directly and CANCEL the will call pick up that we had just requested.. ugh.

I was watching the clock and trying to finish up as quickly as possible so I could get to the school to give Eden an insulin shot. I closed my computer, grabbed insulin out of the fridge, a couple of alcohol wipes and syringes and ran out to the car.

D-dad and I had made the decision the evening before, that since Eden’s new insulin pump was to be arriving by 10am – that she would continue to wear the one she currently had until the new one arrived.

 

Yes, Medtronic had told us to discontinue using it

Yes, they HAVE to tell us that for liability reasons

Yes, it was unlikely there was a problem with the pump – they were replacing anyway

Yes, we will probably get some flack from readers for our decision

BUT – it was the decision we made – and now we were living with it.

 

If we were not able to closely and remotely monitor Eden’s blood sugar with Dex and Nightscout we would most surely have come to a different conclusion. But we didn’t – and it was for a number of reasons.

SO –

mother guilt was now creeping into the equation..

no new pump – probably no new pump until the next day – sky high numbers – wearing a pump that guilt was telling me maybe she shouldn’t be wearing.

I NEEDED to have her take the pump off

I NEEDED to give her insulin with a syringe in case the pump was not giving her insulin

 

Thanks to UPS – I was about 2 minutes too late.

I might just go crazy…

WOW – having the addition of new technology has certainly been an eye opener…

Last night I actually got a pretty good night sleep – even though I was on D duty..

 

why?

 

Because I could set my alarm – and then look at my wrist to check Eden’s blood sugar – WITHOUT the need to get up, walk to her room and prick her finger!!!  I still had interrupted sleep as I did that multiple times – but it was super easy because her blood sugar numbers were steady..

 

SO steady in fact – that I was celebrating this morning..

 

 

Well – CLEARLY – I celebrated too early …  and D wanted to get the last laugh..

 

This is what happened later this morning.. ?!?!

 

WTH ?!

 

 

 

 

 

• First day at school with the new set up
• First time having to call the school and get her to do something about her out of control blood sugars

 

Eden is clearly not acting on the alarms that are repeatedly alerting her to a problem.

 

UGH… It is AGONIZING to watch it happening

and not be able to do anything about it ?!?!

 

 

Not sure which was worse – being in the dark all these years – or being in the light and feeling even more helpless..

 

I might just go crazy watching her body self destruct today… 😦

 

And so it continues…

 

D is not our friend lately… not that it ever really IS our friend – but some days it is easier to live with D than others..

We are STILL trying to figure out why Eden is SO high at school by lunch. Her numbers were pretty good and steady all weekend – the routine was a little different – but not THAT different.. I even had her test more often in the late morning to see when the rise was starting – and of course it didn’t start.

BAM – back to school – back to high numbers?!?!

Not only are we dealing with that complete and utter puzzle –

 

Last night was sleepless –

dealing with blood sugar numbers in the 400’s

ALL NIGHT LONG..

 

Excuse the french 🙂

 

I changed her insulin pump site yesterday afternoon when she got home from school – after the XC party mess.. She ate some of her treats – ate her dinner and her blood sugar was 224 when I had her check at 8pm. I wasn’t surprised – the treats were total swag guesses.. so it wasn’t too bad a number given that fact.

 

Upon going to bed just after 9pm she asked if I wanted to have her test again…

I said NO – I would check her later.. 

She had corrected the 224 with insulin and I didn’t see the need for ANOTHER finger prick

hmm… hindsight 20/20 on that one..

 

Later came around and she was 446 ..

yup – you read that right – 446

Seriously?!?!

 

My thoughts – either she snuck something to eat or she was having a delayed spike from dinner..

 

She was sound asleep – I find her pump and give her a correction dose of insulin… 3 units.. that is a LOT of insulin for her – especially in the middle of the night.

I go back to bed – can’t sleep.. keep thinking to myself – CRAP – I should have cleaned her finger and re-tested.

What if she had sugar on her finger and I just gave her a bucket load of insulin she doesn’t need ?!

 

bad mother moment – but some times it is VERY hard to think straight when you are half asleep.

 

I get up ..

Clean finger – check again.. so much for not giving her the extra finger prick earlier…

457

Phew – but DARN IT!

 

an hour later – 349 

ok – coming down – that’s good..

 

2 hours after that – 422

good lord – WTH…

check for ketones – another finger prick.. we are in the clear

 

at this point in time (4.30am ) I am convinced that her newly inserted site is not functioning

Sleepy thoughts… Do I correct with her pump again – or go get a syringe and give her insulin manually?

I should REALLY change her site then and there – but it is such an invasion of her body that I don’t like to do that in the middle of the night.. getting her in the correct position whilst she is asleep is impossible and she fights me. I could wake her – but I have done so much poking and prodding already she really needs to sleep if she has ANY chance of getting up for school in the morning.

 

I decide to try another correction via pump and go back to bed. once again – half asleep decision

6am – I stumble back into her room and check her again.

442 

good morning!

time to wake up Eden…

Here, let me jab this huge needle into your belly –

that’s always a nice way to start your day!

 

New site – 1 hour later and she was down to 322

more changes to her morning insulin settings and fingers crossed she doesn’t steadily climb back to the horrible 300’s by lunch

 

another night in the life of living with D..

I wonder what the rest of the day will have in store??

 

hopefully a nap.

WE NEED A CURE

Nerves AND exercise – not a good mix…

 

Eden has been back playing her beloved basketball for one week now after her broken thumb..

Last night she attended a girls only clinic (she plays on a boys team) and was one of the older more experienced girls there.

Coach knows her well and put her through her paces – sometimes making her do many more reps than the other girls. Fine by me – sometimes she needs to be pushed and I am always happy when the coaches recognize that and don’t let her coast.

Something else happened too – he asked her to lead some of the ball handling exercises. And by that I mean stand in the center of a large circle of girls, demonstrate and call out the exercises.

 

NOT really big deal..

Except for the fact that Eden does NOT like to be the center of attention – all eyes were on her…

 

What does that mean?

She was nervous – Nerves drive blood sugar numbers UP.

• First blood sugar check – slightly elevated – she got a small correction of insulin
• Second check – even more elevated – not unusual due to adrenaline.

I decided not to give any additional insulin because I was worried she might drop too low with 1 hour left to go

 

After : 1.5 hours of drills and ball handling and 1 hour of scrimmage play.

 

RESULT …

 

right after session ended

correction given – still climbing

 

oh boy…

that is by far the HIGHEST

she has EVER been after basketball…

nerves and adrenaline

were a not her friend last night…

 

For those of you who are unaware – a blood sugar range within 80-180 is acceptable. 

Eden’s ideal target blood sugar is 110-120 – anything outside of these parameters and we need to adjust her insulin dosages.

 

She was almost FIVE TIMES higher than she should have been…

 

Even more difficult –

• Knowing that she NEEDS insulin immediately to bring the blood sugar level down.
• But ALSO knowing that once her body settles down so will her blood sugar levels.
• Being basically bed time – knowing what to do so she doesn’t bottom out and crash in the middle of the night.

 

By some MIRACLE –

I managed to get the balancing act right last night.

 

After giving her HALF the insulin usually required to bring her down from such a high blood sugar – I actually also reduced her basal (background insulin infused 24hrs a day via her pump) for most of the overnight hours.

Seems like an oxymoron to GIVE her insulin but also TAKE AWAY insulin but it worked..

 

A few over night finger prick checks and insulin tweaks later

This is what we saw this morning..

 

 

Hallelujah!

BIG D win…

not sure I will ever be able to repeat it mind you

– but happy to celebrate this little victory. 😄

Gobsmacked … wishing I said more

 

Today our family went to a farmers market…

Strolling amongst the stalls I catch a glimpse of a sign with a picture of a blood sugar meter.

 

It takes me a minute to register what I am seeing –

As I turn to walk away I decide to go back and take a closer look. 

 

There were THREE large poster boards with information relating to “diabetes” – blood sugar testing – AIC, healthy eating, exercise, etc, etc, etc.

 

NO WHERE was there a mention of Type 1 OR Type 2 Diabetes.

 

As I was looking at them from a distance, a gentleman approached me and asked me if I would like my BLOOD SUGAR TESTED.

NOT what I was expecting to come out of his mouth..?!

Turns out they were doing free health screenings (blood sugar testing), trying to educate people about diabetes and the PREVENTION of diabetes –  TYPE 2 DIABETES….

BUT – there was NO MENTION whatsoever about Type 2 Diabetes on any of the information they were displaying..

 

I kindly declined to have my blood sugar tested and explained that my daughter was a Type 1 Diabetic. I then kindly asked him WHY there was no mention of Type 2 Diabetes..

 

his response.. 

People don’t know the difference and it confuses them?!?!?!

OMG – SERIOUSLY ?!?!

THAT IS EXACTLY

why you should be TELLING people!

 

It took everything within me to remain cool, calm and collected and not make a scene embarrassing Eden and my family as I explained to him that is precisely the reason WHY the public NEEDS to be educated..

The sad truth –

A HUGE missed opportunity. Educators taking the easy way out instead of helping to clear up the confusion and misunderstandings that plague the community.. Further compounding WHY many people think that Eden’s Type 1 Diabetes can be reversed with diet and exercise.

 

I wish I wasn’t so gobsmacked – there was so much I wanted to say but I didn’t..

I sure hope he took to heart what I did actually manage to get out of my mouth and change the way he educated future visitors to the booth.

Unfortunately,  I walked away wishing I had said more…

Does ANYONE like chores… ?

 

Just trying to give all the non-D peeps something to relate to…

 

Think of a chore – a monotonous, thankless chore that is your childs’ responsibility to complete

 

For instance – folding the laundry.

• Trying to get them to embrace the laundry like it isn’t such a terrible, bad thing.
• Trying to teach them how to do it properly without hovering or nagging them to do it.
• Trying to teach them to WANT to do it and do a good job because it matters.

 

NOW – think about them needing to do that chore multiple times a day. 

BECAUSE THEIR LIFE DEPENDS ON IT TO STAY ALIVE

 

This can relate to checking blood sugar, counting carbs and dosing insulin.. Something that needs to be done out of necessity and becomes meshed into your daily routine….

BUT

• It also becomes a CHORE for your child.
• A CHORE that we try not to nag them to do.
• A CHORE that if they don’t do can have immediate or long term health consequences.
• A CHORE that requires important decisions and can be life threatening

A CHORE that is not actually done – you are not done

– you are NEVER going to be done

 

image found on Pinterest

Type 1 Diabetes requires discipline –

a series of chores that need to be completed –

whether you feel like it or not.

To stay safe, healthy and ALIVE.

every.single.day.

 

Next time you do a chore that you don’t like doing…

or nag your child to complete a chore that they don’t want to do.

Next time you procrastinate and decide – oh, I’ll just to it later… because you can

 

Think of us…

Think of Eden and all other Type 1 Diabetics that need to do countless chores because they HAVE TO…

 

Understand WHY it can get exhausting and draining knowing that the chores need to be done FOREVER..

WHY we deserve to be FREE from the monotony of finger pricks, insulin, carb counting, ketones, highs, lows and feeling misunderstood.

 

WE NEED A CURE…

Tracking the Chaos…

 

Eden’s blood sugars the last few days have been GREAT.. actually really, really great!

I have yet to add a few to the log – but LOOK at this – This right here represents a GREAT week for us!

 

 

Our life in a nutshell..

NUMBERS…

Lot and Lots of numbers – and trying to figure out patterns and the why’s and hows..

Mostly the reason for such a great week  – NO PE, or exercise AT ALL..

I KNOW – exercise is a good thing – but it often makes things very difficult for us numbers wise.

 

The 300’s you see on Monday were due to a non-active PE session with extra carbs on board to account for exercise that didn’t actually happen..

yup – 10gm of extra carbs with zero insulin

EQUALS

an email to teachers, hours of high blood sugars, extra insulin,

a trip to the office to test for ketones, multiple phones calls and finger pricks.. 

 

Would have been handy at the time to KNOW that there was no activity in PE – but hey.. Eden didn’t think about it at the time, nor did it even cross her mind that she would need to dose for the extra carbs.

The other up/down roller coaster numbers we don’t really KNOW why.. it just happens.. and IS

 

 

 

The above picture is the week before.. a total mess of scribbled notes and the chaos that was..

 

Unfortunately I anticipate the return of the chaotic mess tonight

back to PE, XCountry AND basketball …  all in one day..

 

this ought to be interesting..