Dear Coach …. please keep my kid alive

It’s that time of year again…

Basketball season 💗🏀😳

 

I have a LOVE/HATE relationship with it… mostly LOVE…

I LOVE the game – and even more so, I LOVE watching my girl play the game, do what she does best and loves with all her heart.

 

But – I HATE it because it causes me stress .. lots of stress

 

This year is the first year Eden will play basketball for her school – she has played other sports – but basketball is just different.. it impacts her body differently and I KNOW my child will NOT stop, take a break, check her blood sugar or sit out for one minute if she doesn’t have to, because she loves the game so much.

 

Eden had her first official “tryout/practice” yesterday.. I made all the previous arrangements with the school to be sure the new coach would be sufficiently glucagon trained for a Type 1 Diabetes emergency – which was done right before the session.

At the end of practice I approached him and introduced myself and said I was “Eden’s mom” …

his response – WHICH one is Eden?

Yup – slight internal FREAK OUT from me.. In my head – you mean, the emergency training you just had and the kid you just learned has a life threatening condition and are supposed to ensure is SAFE and you don’t even KNOW WHO SHE IS ?!?!

 

Calm down – momma bear.. calm down…

 

Resume conversation – question him on glucagon training to ensure it took place – get a very off hand – “oh yea, the insulin thing” response..  I’m sure I had a look of pure horror on my face ..

 

I honestly can’t even remember exactly how the conversation went from there – I probably rambled – he had a deer in headlights look – and I handed him my cell phone number and email address and said I would send him additional information and guidelines that needed to be followed..

 

Yes – Eden is in Middle School and for the most part can manage the majority of her T1D care.. I’m SURE I sounded like an over bearing, over protective momma – BUT – exercise is a different animal all together – basketball is different – AND I KNOW MY KID…  and I am entrusting a COMPLETE stranger – who clearly knows nothing about her medical condition – or even what she looks like to keep her SAFE..

 

… insert major stress here … 😳

 

Type 1 Diabetes is SO unpredictable… you just NEVER know what will happen especially when exercising..

 

prime example – last night..

 

Eden has her first real “coaching job” – she was asked to be assistant coach to a 3rd/4th grade rec team.. SO EXCITING! She insisted that I didn’t need to stay and I could drop her off because she wouldn’t technically be exercising… I did think about it, but being her first time I wanted to see her in action! 😃

We had an early dinner and on the way there her blood sugar was trending low and she still had a LOT of active insulin that would lower it further… It was a fairly heavy dinner and I was pretty confident that her blood sugar would rise substantially to counteract the insulin and told her she needed to keep her insulin pump ON (she usually takes off for basketball) and did not give her any additional sugar..

As practice begins, her blood sugar starts to drop and hover at a pretty low level – within less than 30 minutes we were pulling her from the court – giving her glucose gel and taking her pump off so she wouldn’t get any additional insulin… (her Dex read BELOW 55) Because we were alerted by her CGM and watching what was happening disaster was averted. Her blood sugar was falling rapidly and Eden had NO CLUE her blood sugar was tanking…

This is what makes me SO NERVOUS – and she wasn’t even “exercising”…

 

fast forward to this morning and my “dear coach – please keep my kid alive” email below…

overboard? maybe …

necessary? I certainly think so..

I tried to keep it as concise and to the point as necessary – unless you live the T1D life – you just DO NOT realize how serious this can get and HOW QUICKLY it can get there… He needs to know it is serious .. and not just a blasé – “oh yea, the insulin thing”.

 

Yes – I need to find the strength to let go and have Eden take the reins – but as I said before – I KNOW MY KID… She has put her life in jeopardy one TOO MANY times when left in control in the past.. She is just not there yet and neither am I.

 

As discussed – below is some additional info in relation to Eden’s Type 1 Diabetes…

I am unsure exactly what Nurse XXX covered besides what to do in an emergency situation – obviously we need / want to prevent it ever getting that serious!

Type 1 Diabetes is an incurable AUTOIMMUNE condition – where her body attacked and destroyed the insulin producing cells in her pancreas. Not to be confused with Type 2 – nothing she did or didn’t do caused it and it is not due to a lack of exercise or poor eating habits. A healthy pancreas automatically secretes the appropriate amount of insulin and balances/maintains a healthy blood glucose level. Eden’s body DOES NOT produce any insulin naturally so we need to give it externally and monitor her blood sugar extremely closely 24 HOURS A DAY – EVERY DAY..

Eden wears an insulin pump to infuse her insulin and will take it off for basketball, she also wears a CGM (continuous glucose monitor) on her arm which takes a blood sugar reading every 5 minutes.

Basically a “perfect” healthy range for Eden’s blood sugar is around 100-120 .. to get it to this level and keep it there is VERY difficult and a daily struggle.

HIGH blood sugar = requires insulin
LOW blood sugar = requires sugar

Anything below 70-80 is considered “low” and bordering dangerous for basketball – exercise will usually cause her blood sugar to drop further so she needs instant sugar to bring it up to a safer level (juice / glucose tabs / fruit gummies in the box I gave you) anything lower than 70 and she should technically sit out for a few minutes and then re-test her blood sugar to be sure it is coming back up. Usually she is able to eat something quickly and get right back at it but she DOES NOT always feel her blood sugar dropping and it can happen very rapidly when exercising even if she starts at a “perfect” blood sugar level. Low blood sugar is much more immediately dangerous than high as her brain and body need the sugar to function and survive and it can be immediately life threatening. She could collapse, have a seizure and pass out if too low – thus the glucagon training you had. Her fast acting sugar and glucagon need to be readily accessible at all times.

We prefer her to be in the high 100’s for basketball – that gives her a good cushion in case she drops. Starting there – not always so easy. On the flip side – if she is 300 or over – she CANNOT participate until her blood sugar levels start to come down.

Eden will be responsible for checking her blood sugar prior to practice and notifying me. I will have her communicate that number to you – please text me – so that we can cross check and know she is good to participate.

The problem with starting to exercise when her blood sugar is elevated (250s or higher) is that it usually just continues to rise as her body then feels it is under “stress”. It isn’t immediately dangerous – but she does require insulin to bring blood sugar back into range and you may notice changes in her behavior. Unfortunately high blood sugar causes slow reaction times, a dazed, spacey look and the inability to focus. She is not being disrespectful if not following instructions – she literally cannot process what is being said and it is completely out of her control.
Eden is an extremely athletic kid and has been playing competitive basketball for many years. Type 1 Diabetes does NOT hold her back but it does require constant and diligent management. We are working really hard to try to get Eden to take responsibility for her health – but it is an extremely hard balance to maintain – and even harder when playing basketball because she DOES NOT feel blood sugar changes when she is exercising and does not want to leave the court or be a disruption.

Technically she should check her blood sugar and/or the reading on her CGM device (I attached picture so you know what I am talking about) every 30 minutes. Even keeping this device on the bench would be great – easier for her to check (and yourself if so inclined) and know where her levels are. Thankfully we have wonderful technology that enables us to also view her CGM reading remotely so we can monitor her from afar – but technology is technology and it does not always function or we lose connection.

 

Let me know if you have any questions or concerns ..

Communication will be key to keep Eden safe and ultimately have a great basketball season!

I understand that the 8th grade coach was also glucagon trained – I will have Mr XXX give him this additional information for reference also.

Please be sure to notify me if you are going to be absent from practice so we can ensure Eden will be in safe hands.

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!

 

 

 

 

 

Bacon to the rescue – just another Monday living with Type 1 Diabetes…

 

I picked Eden up from school today and it was instant “grumpy” ..

she got in – glanced down and saw the lab paperwork in the center console and knew we were headed to get blood work.

“oh, great, blood work – really?!” ..

yup – sorry kid..

 

I asked her to check her blood sugar – the usual first thing she does as soon as she gets home from school

her response – “oh yeah – my site came out” as she shows me the end of the tubing that SHOULD be attached to her body and infusing the insulin she needs to SURVIVE..

 

huh, well that explains why her blood sugar would be in the 400’s ?!

 

I keep driving until there is a safe place to pull over and get a new infusion set out of her D bag – the kit she carries with her everywhere – and now not only is she going to get blood work, but I am having to jab her with a giant needle on the side of the road..

grumpy silence the entire drive to the lab ..

 

Once there, I WANTED to take pictures (just of her arm mind you) for the benefit of Diabetes Awareness Month, but in her current mood she was having absolutely nothing of it..

 

Blood work completed – USUALLY afterwards she gets a “treat” … maybe a Starbucks or ice cream or something small – just because getting blood work every few months is not something she enjoys but will be a part of her life forever.. in the early years it was probably a bribe and the tradition stuck.

BUT – given the fact that her blood sugar WAS NOT coming down – and the anxiety from the blood draw had actually sent it UP higher there was no possibility of a treat.. 😕

 

As a Type 1 Diabetic SHE CAN eat anything and everything…

the difference is whether or not it is a good idea.

 

At this point in time – I had to say NO.. it was much more important to get her blood sugar back in range first.

 

so now Eden had endured –

• a new site inserted on the side of the road
• bloodwork – 4 vials of blood drawn and a tech who “clicked the thing” as she said – and hurt her
• me saying NO to the treat that she usually gets afterwards
• and being STARVING and not able to eat until her blood sugar comes down a little bit.

 

 

Another example of the stuff people don’t see or realize goes on behind the scenes .. every.single.day.

and aside from being grumpy and me getting the silent treatment for an hour or so- SHE DID NOT COMPLAIN

 

 

A few hours later – her blood sugar is improving and she asked me to make her some bacon..

how could I refuse… ??

BACON TO THE RESCUE ..

Bacon requires no insulin, does not cause an immediate spike in blood sugar and is the stand in “treat” for today – at least it brought a smile to her face

 

just another Monday living with Type 1 Diabetes…

 

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?

 

 

 

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

Technology Dance…

Technology is our best friend – until it isn’t…

We are SO reliant on technology to keep Eden alive, safe and healthy that when it isn’t functioning it just adds stress.

People have so many electronic gadgets in their regular day to day lives – but add in Type 1 Diabetes and we have a LOT more gadgets that do very important things!

here is the BASIC rundown of what we rely on daily

• Insulin Pump – yeah – quite obviously the top of the list – this baby literally keeps Eden ALIVE

• Blood Glucose Meter – wirelessly transmits her blood sugar value to her pump

• Dexcom CGM (continuous glucose monitor) – this is a 2 part piece of equipment.
  • sensor – inserted into her arm (or other body part) that transmits blood sugar reading to receiver
  • receiver – that displays the data in number and graph form

• Nightscout Rig – this is Eden’s setup for enabling D-dad and I to remotely view the Dexcom data
  • consists of a phone and a Dexcom receiver – hooked together with a cable – that must be within 20-30 feet of Eden’s body (the sensor in her body) to be able to transmit data

• Pebble Smartwatch – Eden’s Nightscout Rig – transmits data to the “cloud” – which we pull down with our personal cell phones and then use bluetooth technology to pair with the Pebble so we can then see the data

 

amazed yet?

As I mentioned – very basic rundown on the Nightscout process which was a complicated multi-step process to set up…

These gadgets take batteries and specific cables, need to be charged regularly and Dexcom needs to be calibrated with a blood sugar reading every 12 hours to help maintain accuracy.

We have gotten into somewhat of a routine where we have 2 Rig phones so that we can have one charging and one in use at all times and 2 Dexcom receivers so we can have one attached to the Rig and one for Eden to use and refer to throughout the day.

We try to calibrate in the morning before school and at night before bed – but you aren’t supposed to calibrate unless your blood sugar is stable (not rising or falling) – which is not always easy

We have a backup of batteries and cables up the wazoo – some gadgets warn when the battery is getting low – some things just stop working (blood glucose meter)

For the Nightscout Rig to transmit we also have to rely on phone/wifi/internet connection..

The past 3 days this carefully orchestrated technology “dance” has failed us – a number of things have gone wrong and it takes time to figure it out – time when Eden is at school that is hard for her to give…. 

 

Tuesday – she was high after PE but her blood sugar check and Dex were not accurate and in sync. Eden’s blood sugar was reading high pretty much ALL day – I lost data connection and stopped receiving data just after lunch and she was 320..  next thing I know she is texting me right before track practice – an hour later and she was only 62.. not good.. and I couldn’t see what was happening..

what does that mean?

D-mom drives to the school, sits in the car and observes track practice from a distance – her coach is nervous about the whole D thing and takes it very seriously (YAY coach!) but he thinks I am monitoring remotely and will alert him before anything becomes an issue. I can’t tell if there is going to be an issue – don’t want to freak him out by sending him a text message so I sit there – just in case.

 

 

Wednesday – Rig stopped transmitting data 1 hour into school day and we did NOT have data for well over 6 hours. Do I need to see Eden’s blood sugar every minute of every day? NO – but it is VERY helpful and in the instance of the afternoon before would have given a warning that she was dropping too quickly. This day she was high, high, high… She had a track meet straight after school and I was very concerned as to whether or not she should even run – whether I needed to replace her pump site – whether she had ketones or if I needed to come give her a shot…

 

 

 

 

Thursday – today… 

in the middle of PE class I receive a text that the Dex sensor came out of her arm… DANG IT… so we will have no data AT ALL – AGAIN – all day today..

 

 

they say things happen in 3’s, right?

 

so grateful for technology and the devices we have – but not too happy with it right now!

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…