Blue for me – Blue for you…

 

My mission is obviously, and clearly to spread awareness about Type 1 Diabetes..

 

how it impacts our lives – share our truth living with this disease.

warn of the symptoms to eliminate misdiagnosis and tragedy.

help people understand why a cure is needed for us and so many others and to EDUCATE

 

As we did last year – we have “gone BLUE” to help raise awareness for Type 1 during National Diabetes Awareness Month..

 

 

 

It is such a fun and simple concept that draws attention to the disease and has people asking questions..

WE WANT the questions – because then we can give the answers ..

 

 

ANYONE can join in to help raise awareness… almost everyone knows that in October everything turns pink for breast cancer.. We support the ones we know and love that are living with it – beaten it or lost their lives to it..

 

Lets all join together to let everyone know that in NOVEMBER – we turn BLUE for Diabetes..

Pretty much everyone knows SOMEONE who has been or is affected by Diabetes..

 

We specifically choose to educate about Type 1 because we live it every.single.day.. 

But ALL types of Diabetes need awareness – most of the public doesn’t even realize that there ARE different types.. It takes everyone coming together to change that!

 

 

if you aren’t brave enough to color your hair – paint your nails!

change your profile picture on social media

wear blue – wear a Diabetes Awareness shirt designed by us

share a blog post, facebook post or whatever…. but please do something!

 

 

 

 

 

The incidence of Diabetes is on the rise – if you don’t personally know anyone affected right now

– chances are you probably will in the future..

November is National Diabetes Awareness Month

November 14th – is WORLD Diabetes Day ..

 

If you don’t go Blue for me – go Blue for you!

 

 

 

 

 

OUR turn in the Spotlight

 

No one thinks it will happen to them..

 

No one expects their child to be diagnosed with a life threatening, incurable chronic disease.

 

but it can happen and it does ..

It happened to us – without warning and we now live a completely different life than we ever thought we would.

 

one with endless needles, carb counting, blood sugar monitoring and insulin

one with stereotyping, ignorance, bullying, finger pointing and stigma

 

November is our turn in the spotlight.

Our month to raise awareness for Diabetes

and to educate the world.

 

To show the public what the realities of Type 1 Diabetes really are.

Our chance to be seen and heard on a large scale and help stop the daily bullying the T1D community receives.

 

THIS is what Type 1 Diabetes looks like ..

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..

 

 

the life we live is NOT a joke…

Beware – there is a slight rant ahead … ok, maybe a long one… 😜

 

I am

SO SICK AND TIRED OF DIABETES

BEING ONE BIG TAGLINE …

 

DIABETES IS NOT A JOKE…

 

 

Earlier today I saw an oooey gooey cookie lasagne recipe on my news feed…

the second comment was in relation to “diabetes” on a plate..

I decided to scroll through and count the comments people posted about diabetes and stopped counting at 33 .. I saw THIRTY THREE comments in less than 30 seconds that made some mention of getting diabetes in relation to eating the cookie lasagne creation…

THIS is the stereotyping we are up against.. 
THIS is why Type 1 Diabetes is so misunderstood and the public doesn’t understand how serious of a disease it is….

This is why our kids face stereotyping day in and day out. why people question “should you be eating that?” exactly why people are shameful about taking care of their diabetes in public – type 1 OR type 2 …

Because “Diabetes” is treated like one big JOKE.. Diabetes is not a joke – whether type 1 OR type 2.. It has serious health implications and the shaming really needs to stop..

it is a DISEASE that KILLS people on a DAILY BASIS..

 

I will NEVER understand why something that causes

heart disease – kidney failure – blindness,  amputations and DEATH

is FUNNY..

 

The main cause of my blog is to raise awareness of Type 1 Diabetes… Type 1 is an autoimmune disease that has ZERO ZERO ZERO to do with an unhealthy lifestyle or eating an ooey gooey cookie lasagne.. In FACT – we don’t want to stop Eden from being able to enjoy treats such as these – she is a kid and we don’t want her to be made to feel any different that she already is..

 

BUT – the fact is – NOT ALL TYPE 2 Diabetics can reverse their diabetes or GOT IT from eating too much sugar either?

 

Am I steaming MAD ?

You bet…. today, I am just over it.. I’m sure there are many of you who might think I need to take a chill pill and relax – it’s “just a joke” .. well, that “joke” can KILL MY CHILD.. that “joke” means that people don’t take the disease seriously.. means that people brush it off as no big deal, means that they don’t donate for research …

 

 

just for a moment – lets compare breast cancer and diabetes – just because they are on the graphic together above..

I guarantee most of us have been touched in our lives from someone who was diagnosed with breast cancer – survived it – or died from it. Did you support that person – donate $$ to the cause – wish for a cure??

 

Did you laugh about their diagnosis??

my bet – NO

Because the world understands that cancer is no laughing matter – yet DIABETES as a whole, KILLS MORE PEOPLE EVERY YEAR – and diabetics are LAUGHED AT

 

The life we live every single day

is NOT A JOKE and is NOT FUNNY..

 

Everyone really needs to band together and start correcting people who are Diabetes shaming – IT IS BULLYING and it is NOT FUNNY…

 

There are so many anti-bullying movements out there.. maybe the DOC should raise their voices and start one for people with Diabetes?

 

 

 

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.

 

what if….?? EMERGENCY strikes

 

As parents we pretty much always see worst case scenarios flash through our brains and try to eliminate disaster before it strikes…

It’s engrained in our thinking to protect our children – from anything and anyone who could cause them harm.

We pad edges of coffee tables and fireplace hearths, we puts gates on stairs, child locks on drawers and toilet seats when they are young… you name it we want to do anything and everything in our power to protect our children from an accident or god forbid worse…

As they get older – they get warnings when rough housing that “someone is going to get hurt” – we want to protect them from cyberbullies, we check ingredients, buy organic, wear mouth guards to protect their teeth – you name it…

 

We do what we can to protect them, shield them, prepare them to make smart choices, advocate for themselves, for their friends and be good members of society… 

 

D parents need to go so much further than that ..

We need to teach our children to keep themselves ALIVE, healthy and thriving..

We have to educate our children – teachers, coaches, family and friends…

 

We teach our kids about blood sugar numbers, high / low symptoms and how to treat them – how to calculate insulin dosages and inject themselves with it. How to adjust for exercise or stress and to carry supplies with them anywhere and everywhere they go – because WHAT IF ?? 

We HAVE to be PREPARED for the worst case scenario because it can and does happen…. Type 1 Diabetes is unpredictable – but you know what – SO IS LIFE….  You never know when an emergency might strike such as a HARD LOCKDOWN at school… meaning your kid is stranded where they are with zero communication and only what they have with them to survive.. 

Today the D community got a wake up call … I got a wake up call… unfortunately this is the day and age we live in – it happens and it is ONE MORE THING we need to be prepared for.. that I need to prepare Eden for just in case…

Here is the story as it unfolded, that I have been given permission from the mother to share – I am so grateful that everything turned out OK and I am sharing in an effort to help further educate .. A lockdown can turn into a very dangerous situation for our D kids – and it isn’t just because there is a crazy maniac on the loose…

This story will protect and save lives in the future – and I will be having Eden carry glucagon with her from here on out.

 

Initial post in T1D Support group this morning…. HUNDREDS of us were waiting, offering support and watching for updates… 

 

 

 

 

another D mom posted this picture as a piece of advice for other parents..

what is it? you might ask…

starburst – starburst, taped to the bottom of a desk in case of a hard lockdown during school hours..

Eden has supplies in every classroom – but it never dawned on me that she might be stuck UNDER her desk unable to move for hours on end in a hard lockdown scenario…

 

 

 

HOURS LATER we get this update…. 

 

SCARY?!?!

Our school medical plan states that in an emergency situation Eden will be taken care of… In a HARD LOCKDOWN this cannot happen…..

Her 12 year old son is clearly a CRAZY AMAZING KID …… and his parents deserve major kudos too… they were PREPARED – they PREPARED HIM –  and the most impressive thing – he was only diagnosed 7 months ago…

 

 

 

 

fighting to live – literally…

 

Last night is a night I won’t forget for a while..

A very typical Sunday night for us. A busy weekend of basketball tournaments followed by 2.5 hrs of skills clinic in the evening.

It was a GREAT weekend of basketball – we were all pretty happy and maybe a little bit too cocky – telling D to “take that!

WOOHOO – Way to go Teams!

 

 

Yeah – guess D didn’t like that very much… 😔

6 games of basketball in 2 days is a LOT of hard work and exercise for anyone – let alone trying to manage Type 1 Diabetes and the effect it has on Eden’s body.

 

But we do it – and we do it often

Because she LOVES basketball and T1D shouldn’t stop her from doing ANYTHING…

 

4 of the games were on Saturday – 3 were back to back – with little to zero break in between games – I brought extra sugar thinking her blood sugar would run low – but of course adrenaline took care of that and she ran high all afternoon..

Totally expecting a crash on Saturday night – I changed basal rates so she would get less insulin before going to bed and she ate a late night snack with ZERO insulin to help keep her blood sugar up and stable..

Well, the crash never happened on Saturday night as expected??? 

In fact, her blood sugar remained high and never dropped below 200 – waking up high on Sunday too..

I was too over cautious every time I checked on her overnight to give her extra insulin because I was SURE the crash was coming..

but it didn’t….

Until LAST night…

Her Dex transmitter came out of her arm right before we were leaving the house for her evening basketball clinic. I INSISTED that we re-insert before we left because it takes 2 full hours to “warm up” and calibrate – so we are completely blind to what her blood sugars are doing for 2 hours (except by doing a finger prick)

testing during clinic and she was great – perfectly in range..

After practice – as usual – her blood sugar was high due to adrenaline

Eden was going to eat something when she got home – so gave herself insulin and was going to come home, eat and not dose for the food she ate.

 

great plan – but it didn’t really work out..

 

 

You can see where she tested and calibrated (2 red dots) in the car on the way home from basketball clinic..

She came down slowly and then I could tell she was starting to tank at 9.15pm right before she went to bed..

She had a juice – I turned down the basal rates to limit how much insulin she would get for the next 2 hours and waited..

That wait literally turned into all night long as her blood sugar refused to rise

 

Every time I tried to wake her to eat or drink something she became more and more combative. 😢

 

She was flailing arms, screaming at me and telling me to go away, clenching her mouth shut and down right REFUSING to eat or drink.. She was not herself – she was not fully awake, had her eyes closed the entire time and has never behaved this way and to this extent before

It went on for hours…… and hours and hours…

She would take a little juice here and little glucose gel there but it was NOT easy – she wanted NOTHING to do with it..

Her blood sugar would start to rise and then slam right back down again..

 

 

I was absolutely beside myself.. scared, mad, exhausted and about ready to scream for D-dad to forcibly hold her down so we could get sugar into her mouth..

I had the Glucagon film reel playing in my head – ready to use it – thinking there might be no other option

At about 1.30am it looked like I could finally go to bed and close my eyes – I set my alarm for 2 hours later and woke up to her being in the RED zone AGAIN…

 

OMG… 

We have had MANY very stubborn low blood sugars lately and I have NO IDEA why… nothing has changed and I have lowered her overnight insulin rates.

This is part of Type 1 Diabetes that people DO NOT SEE… DO NOT UNDERSTAND..

It is so scary and dangerous.. I was literally fighting with Eden to keep her alive last night..

She slept though every single beeping alarm of her Dexcom to warn her – if she had started to crash after I had gone to sleep – I wouldn’t have checked on her for 2 hours… that could have been 2 hours TOO LATE…

Eden woke up tired, with her blood sugar in range and with absolutely NO RECOLLECTION of what had transpired and went to school just like it was any other day.. looking and acting perfectly healthy and normal

The Type 1 Diabetic life is beyond normal – but it is OUR normal

It matters…

Some days Type 1 Diabetes really pushes me to the edge..

 

The outermost limits of my sanity – frustration – exhaustion and worry

 

I really can’t even describe in words what a pain in the butt this disease is to live with day after day after day and the deep impact it has on my life.

 

today has been one of those What the Heck kinda Diabetes days..

one that made me really think and ponder

 

I haven’t been keeping up with my blogging anywhere near as much as I would like to

trust me – I still have a lot to say on this darn disease

 

 

• Some days it is just hard to write
• Some days I desperately want to write – to vent – to complain – but know it doesn’t really do much good and don’t want to come across as permanently negative
• Some days I want to brag because of the smallest, littlest accomplishment we might have had – or scream from the rooftops at how proud I am of Eden
• Some days I feel like I am just MAD – mad at her and the blasé attitude she has about her management or mad at myself for being so hard on her
• Some days I wonder if writing is really even worth it and whether I should even bother – is it even making a difference?

 

As her mother – I want Eden to live in the here and now – I want her to be a kid and have fun and freedom and not feel limited by her disease or have a care in the world…

but she does…

She has a disease than requires vigilance and maintenance CONSTANTLY.

It’s hard to not constantly nag and ask questions to ensure that the correct things are being done to maintain her health.

What she does now has immediate consequences as well as consequences that can affect her entire future in terms of complications.

It’s hard telling my perspective as a mother of an almost teen T1D without sometimes wanting to throw her under the bus out of pure frustration. I have to remind myself she is a kid – a great kid – doing the best she can.

Normal teen attitude and behaviors mixed with a life threatening and complex chronic illness test me every single day in ways I never could have possibly imagined. Putting that into words the general public might understand is difficult.

 

 

Some days it makes me want to run away and hide and just give up.

But I can’t and she can’t..

We are stuck here in this crazy roller coaster of a life and doing the absolute best we can and I have to remind myself of the purpose of writing in the first place.

• to educate people
• to help people understand our life
• to shed some light on the disease that is Type 1 Diabetes
• to let others who might be in the same boat feel like they are not alone

 

 

almost every day this week I have been approached either in person or contacted online by someone who has read and been touched by me sharing our story.. not once, not twice, but at least 5 times – just this week…

sharing their own personal stories – expressing their amazement at what we deal with and showing a true desire to know and learn more about Type 1 Diabetes.

 

I guess that means what I am doing is working.

 

it gives me hope – it makes me want to continue sharing – even if it might be less often than the past

people are learning and do care and I am honored and humbled that they have reached out to me. 💙💙

 

please keep reading –

please keep commenting and sharing so that we can continue to educate the public one person at a time.

it matters and it is making a difference… 

 

the good, the bad and the ugly..

 

In the D world – it pretty much all boils down to blood sugar numbers

 

good = in range 

bad = low

ugly = way high 

 

On the Dex graph

 

white – in range – you are AWESOME !

yellow – HIGH – warning, warning – need insulin!

red – LOW – danger! need sugar NOW!

 

we have certainly had our fair share of ALL of the above lately

I have tweaked and tweaked insulin settings and gotten them to be pretty darn good at certain times of the day.

 

problem is – that was for a “normal” day

but what the heck is normal anyway? in this case  – a non-school, spring break kinda day.

 

In the D world – even if you kept the exact same schedule and ate the exact same foods every day for a week you would get different results..

now that we are in the second week of our back to school routine it appears my tweaking may have gone a little too far

 

 

– or she exerted herself more than usual in PE today

– or had a smaller mid-morning snack

– or the 6 basketball games and 2.5hrs of clinic over the weekend finally caught up with her

– or the sky is blue 😉

 

oh – but on the plus side – I was a big girl D-mom and resisted the GIANT torturous urge to call the school as I watched her redline it during the school day.. letting her take control and do her thing.

 

IT WAS HARD

she survived.

I survived.

but I’m ready for a glass of wine…

Oh boy… what a way to start the day

 

This is what you get when you “rage” bolus in the wee hours of the morning… a guilt producing, scary low blood sugar reading that you, the parent caused. 😢

 

 

Multiple, multiple times every single day we make medical decisions that affect Eden’s life.

We do the very best we can to act like her non-functioning pancreas but we make mistakes, we are not perfect and Type 1 Diabetes is unpredictable and stupid.

 

the backstory…

Last night Eden had basketball practice – as typical LATELY – her blood sugar starts off fine and then adrenaline kicks in and she skyrockets mid practice. I have experimented with giving her extra insulin before practice to counterbalance the high that is coming – but that in itself is very risky. Exercise typically causes a DROP in blood sugar, so additional insulin upfront could have BAD consequences. Adrenaline highs usually correct themselves over a period of hours after her body recovers and her blood sugar levels out.

I say USUALLY…

Because over the past few months, everything that we had become accustomed to her body doing has changed. Her body is changing and so are her insulin needs and how it reacts.

 

We change Eden’s insulin pump site every 2-3 days.

We fill the reservoir in the pump that holds the insulin with 2-3 days worth of insulin. (mind you she doesn’t use the same amount daily) The insulin only stays stable for that length of time due to body and outside temperatures and we also need to rotate the location of the cannula under her skin. The longer the cannula stays under the skin in one place, the poorer the adsorption, the greater risk for bacteria entering her body and the development of scar tissue. The longer the insulin stays in the reservoir, the more it breaks down and is less effective in controlling her blood sugars.

Eden does not particularly like having her site changed. Honestly, I really can’t blame her – its a big needle that we have to insert into her body and I hate having to do it – but it is a necessary evil.

I mark on my calendar the 2 day mark and check in with her on how much insulin she has remaining so that she doesn’t run out, consider how stable her numbers are and go from there. Yesterday was day 3 and her site needed to be changed but she still had plenty of insulin left to get through the night after practice so I opted to put it off and do it in the morning – putting off inflicting pain on my child and wanting to use every precious drop of the liquid gold she had remaining in her pump.

 

8.40pm :

Her blood sugar after practice was high – not unusual – and not as high as it has been getting

 

 

A fairly typical reading of late – she gave herself a correction dose of insulin to bring it down and I watched Dex closely over the next couple of hours.

10.30pm:

Bedtime for me and Dex showed she had come down consistently – not too quickly – and leveled off in the 200’s.. I was totally happy with that knowing that she would continue to drop on her own.

12.00am:

What I did NOT expect was at her next check that her Dexcom reading would be WAY off  – showing a reading in the mid 200’s when a finger prick was actually 395 😒

YIKES…

SO – I give her another correction dose of insulin using her pump and stumble back to bed.

Restless – I continue to check Dex consistently over the next few hours – waiting for it to catch up and display an accurate blood sugar number. Dex still showing in the 200’s..

3.20am:

Get up again and do another finger prick… 302

UGH… another correction with her pump.

 

Back to bed – I fall asleep for 30 mins or so and it dawns on me… HER PUMP SITE IS NOT WORKING.

Fed up and exhausted – I get BACK OUT OF BED – head to the supply cupboard – get a syringe – go to the fridge and get the insulin. I draw out insulin for the correction I am convinced she just didn’t receive and an extra unit to make up for the basal insulin she wasn’t going to be getting..

I take the insulin and I inject it into her arm and head back to bed.

2 hours later and I am awoken by D-dad getting up and ready for work. I look at my wrist and it says Eden’s blood sugar is 85 with an arrow down… I thought to myself – well, it probably isn’t accurate – it has been off all night – fighting the need to get up.

5.45am:

Get out of bed AGAIN to test Eden.

Finger prick 85…

SPOT ON – COMPLETELY ACCURATE and MATCHING DEX

SAY WHAT ?!

Well, I guess my day has now officially started.. 85 is on the low end and thanks to Dex it shows, still dropping. Given the fact it is Spring Break and she will be in bed for a few more hours – too low for my liking..  Within minutes, my wrist is vibrating and she drops to 74 – head to her room – wake her up to eat some sugar. I watch and wait – she drops into the 60’s – head back to her room – wake her again and make her eat some more..

and that, my friends is how we ended up at a lovely blood sugar reading of 52 this morning.

Fed up with a blood sugar that would not come down, frustrated with an inaccurate reading from Dex that we rely heavily on and mad at myself that I didn’t just change her site before bed and just wanting to SLEEP.

I, her mother, gave her a dose of insulin that caused a dangerous low blood sugar..

To be fair – we will never actually know whether it was the exercise finally catching up with Eden or the dose of insulin I gave her that caused it. Her Dex could have been accurate the entire time and she could have had residue on her fingers causing an inaccurate finger prick. It could have been a combination of all of those things and/or her site could have been functioning just fine and we were only dealing with a stubborn high??

no way to know whether it was my fault or not… But I am her mother and I am in charge of keeping her ALIVE during the overnight hours.. the guilty feelings will ALWAYS creep in – even though we do the very best we can with what we have…

 

So – not only did I save my child’s life today – I could easily have taken it away..

It could have been MUCH worse and those thoughts will plague me today… a hard thing to swallow for sure but I cannot dwell on it too long.. 

It is our life – walking that tightrope every.single.day. and some days we fall off..

But we bounce back and do it all over again because we have no other choice.

THAT is the Type 1 Diabetes life.. 

 

WE NEED A CURE…