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.

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.

 

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

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…

My human guinea pig …

We had our Endo (specialist doctor) appointment on Tuesday – a day that we really do not look forward to.

I went into the appointment with a list of questions, comments and concerns – MANY more than usual – and the fear that I would let my frayed emotions get the better of me.

We have had SO MANY issues with T1D lately and it has been ridiculously, frustratingly, HARD. I hate the feeling of trying to explain how/why Eden’s blood sugars have been so high and whacked out. Thankfully her Dr. is amazing, kind and incredibly supportive and encouraging.

 

The thing is, I’m kind of off the hook.

I can only do so much with her D care and management and SHE needs to do the rest. 

BUT, I’m kind of also ON the hook too because I’m her parent and it’s my job to ensure she is safe and healthy. 

 

Eden is not at the point of being able to completely self-manage. Among other things, I keep track of site change days, insulin levels in her pump, CGM sensor changes and inserting the devices into her body. Eden does not make any changes to the insulin dosages that are programmed into her pump either.

I do that. 

The only way to do that is to track trends and consistently ask questions of Eden to determine whether changes might even need to be made. Increasing the amount of insulin Eden gets is not a thing to mess around with – I take it very seriously and do my darndest to fine tune things to the best of my ability.

Eden gets a steady stream of insulin (called basal insulin) 24hours a day – as well as needing insulin for meals or high blood sugar (those rates vary too). Her basal insulin requirements vary dramatically depending upon the time of day. Currently she has NINE basal rate settings programmed into her pump that I tweak up/down and change the time around. An hour here or there makes a difference – and getting those settings just right is a near impossible feat lately.

 

The only true way to test whether Eden is getting the correct amount of basal insulin is to do basal rate testing – which requires her NOT to eat or exercise – so we can see if her blood sugar rates remain steady over whatever period of time we are analyzing. For the past 4 days we have not allowed Eden to have a snack in the morning at school so I can get a better idea of what is happening with her blood sugars. Thank goodness I can monitor from afar with the use of Dex and Nightscout – or she would be needing to test her blood sugar every 30-60 minutes.

The gradual changes I made over the last few weeks have not been working. The doctor helped with some suggestions which I applied but they still weren’t making ANY difference. This morning, being completely fed up, I decided to go super aggressive on the changes and told Eden ONE more day of no snack..

Well – that didn’t work..

Eden’s blood sugar went low at the tail end of PE today (hopefully not from my changes) so she needed to treat herself with some fast acting sugar. PE is another story all together – never the same level of exercise 2 days in a row – so very hard to manage.

 

I watched from a distance as her blood sugar slowly crept from low, to in-range and then higher and higher and higher, into crazy high ONCE AGAIN.

 

I now have no idea whether she over treated the low and that contributed to the rising blood sugar levels or my aggressive basal rate changes were NO WHERE near aggressive enough??

The reality – my poor kid is really nothing short of my human guinea pig.

Every day we are taking our best guess with the information we have and giving her medication that can kill her based on those guesses…

no snack again tomorrow for my girl as we try to figure out the mystery and exactly WHICH basal rate I need to change by a little or a lot.. pretty sure we need an overhaul for other settings too – but basal rates is the place to start.

Type 1 Diabetes seriously has a mind of it’s own – it makes absolutely NO SENSE some days and changes the rules whenever the heck it wants to. There is ALWAYS something to keep us on our toes – D never rests and lately seems to be getting the last laugh.

 

WE NEED A CURE

what comfort zone?

A little known fact about me – I hate politics…

ANYTHING to do with politics, government going on around me and I tune out. 

completely.

Should I care – probably..  but it goes back to my high school days (a LONG time ago) ..

short version of events and how I remember it going down. In high school I wanted to either be a doctor or a lawyer. There were prerequisite classes that needed to be done to set me up for entry into university. My school counsellor was of the opinion that I should go into politics and put me into that class and not what I actually wanted to do. I HATED it. I REALLY wanted out – but was not given that option.. It turned me against school and eventually lead me to dropping out of high school.

Yup – I have a rebellious streak and it has lead me into a lifelong dislike for ANYTHING related to politics or government.

SO – when I was asked by our local JDRF Chapter to write a letter to our local Congressman so that the JDRF Government Chair could take it to Washington DC in March – I have to admit I was totally put out of my comfort zone. My first gut reaction was UGH. I just saw the word Government and I went UGH.

Silly – I know… but it was my natural first gut instinct.

Of course, I sucked it up and wrote the letter…

I would do pretty much anything to help find a cure to Type 1 Diabetes for Eden – although I don’t think you will see me personally in Washington DC anytime soon..

 

below is my letter.. will it make a difference – I really don’t know..?

but I am certainly willing to give it a try.

I love her THAT much .. 💖

 

Dear Congressman …..,

Currently, my biggest hope, dream and wish for the future is a cure for Type 1 Diabetes (T1D). 

Why? 

Because our life changed forever almost 5 years ago when my daughter Eden (7) was diagnosed with this incurable, sometimes life threatening, misunderstood, auto immune disease.

Why contact you?

Because you have more power than I do to create change and help fight for funding for research to find that cure – and I need your help. Eden needs your help.

Our story is becoming one that I hear all too often. Another child being diagnosed with T1D and being thrown into the world of fear, heartache and anguish as we are forced to act as one of our child’s internal organs to keep them alive 24hrs a day 7 days a week 365 days a year. One wrong calculation can mean the death of your child – now that is immense pressure!

Type 1 Diabetes is an auto immune disease that causes our children to be insulin dependent for LIFE. Living with T1D is a very difficult balancing act as we juggle the physical and emotional burdens that it imposes. There currently is NO CURE and although insulin treatment allows Eden to live – it is only possible by her being subjected to 8-12 finger pricks a day to test her blood sugar, accounting for every single item of food that she eats and trying to maintain blood sugar levels when everything she does makes a difference. A blood sugar too low is immediately dangerous and too high puts her at risk for long term complications creating a very difficult balancing act.

Eden wears an insulin pump that infuses insulin into her body 24 hours a day and a CGM (continuous glucose monitor) to help manage her T1D – but these require insertion via big needles every 3 and 7 days respectively. They are only tools – medical devices – which help sustain her life. Without insulin – Eden will DIE. What we really need and want is a biological CURE so that Eden and all the other people living with Type 1 Diabetes can live a life without needles, being attached to medical devices or having to consider T1D in every single decision they make in their day. 

Eden is now at the age (almost 13) where she is needing and wanting to try to manage her disease on her own. It is also a very delicate age where she is trying to find herself, fit in with her peers and doesn’t want to be different. That alone is hard as a pre-teen, let alone factoring in wearing 2 medical devices attached to your body and having to make medical decisions that keep you alive all day long. Decisions that she will never get a break from – EVER.

As her mother, it is incredibly exhausting, frustrating and sometimes scary as I try to teach her about managing a complicated disease where one wrong move can cause death, but also giving her the freedom to live her life without fear and hovering. As Eden grows older the burdens will entirely be on her shoulders – right now I try to ease the burden as much as possible. I wake multiple times during the night to test her blood sugar, I keep an extensive medical plan in place at her school to ensure she is safe, I advocate for her wellbeing and education with teachers and coaches, the costs drain our bank account, I spend hours on the phone with insurance companies, keep track of blood draws, doctors appointments, her prescriptions and of insertion days (for medical devices) and I also inflict the pain on my daughter to keep her alive. 

The general population does not understand what living a life with Type 1 Diabetes is truly like. It is a daily roller coaster ride of emotions that we cannot escape. Eden does not let T1D hold her back and we will not allow it to determine what she can and cannot do with her life. We attack this disease as a family and do what needs to be done to allow her to live as good a life as possible. Eden is an amazing daughter, friend, sister, student, athlete and T1D advocate and my biggest hero.

The T1D life is not easy – but for the most part we make it look easy – because right now, we have no other choice than to live with it.

I hope you will join me in my mission, my dream, to help educate the world and find Eden a cure for Type 1 Diabetes. Help me to educate and fight for the funding that is so desperately needed. Not only will a cure make a difference in our lives – but in the lives of future generations that may be diagnosed today, tomorrow or next year. 

Thank you in advance for your support.

Sincerely Yours,

She should…

 

The last few weeks have been kinda crazy around here…

Basketball season is well and truly in full swing – meaning that pretty much every single afternoon / evening / weekend is filled with basketball of some sort.. ❤️🏀

What does that mean..?

Well in Type 1 Diabetes land it means unpredictable and increasingly HARD to manage blood sugars.

more worry and less sleep for us D-parents

 

You should all know by now that LOW blood sugars are and can be extremely dangerous if not treated promptly.

Some days all it takes is a little boost of sugar to raise Eden’s blood sugar to a safe level. Other days it takes a LOT and I mean a LOT of sugar to raise her blood sugar and keep it there without falling again.

Exercise and Type 1 Diabetes is a weird beast.

 

A lot of exercise causes a cumulative and delayed low reaction.. We don’t know WHEN this might happen although through experience we have gained a fair bit of knowledge on how Eden’s body USUALLY reacts.

 

We had quite a few challenges to face this past weekend.

Eden had SEVEN basketball games within 2 days  – FIVE games in one day

 

That is a LOT of exercise and it requires us all to be on our toes, thinking about D the entire time..

Something we DID NOT expect was for Eden’s blood sugar to crash seemingly for NO REASON – just before her FIRST game.

It started gradually – then she started dropping at a faster and faster rate during pre-game warm ups – with double arrows down showing on our wrists thanks to Dexcom and Nightscout. (something we would never have known without Dex)

We yelled out for her to EAT – she still had a LOT of active insulin working in her body from the breakfast she ate just before we left the house. She didn’t test her blood sugar – just grabbed a handful of fruit pieces, gave us a thumbs up and ran back onto the court.

Her blood sugar continued to drop over the next 10 minutes – we yell for her to EAT again

At this point – D-dad and I think that she may have wrapped the sensor on her arm too tightly – compression of the Dexcom sensor can cause FALSE low readings.. It made sense – she started dropping right after she wrapped her arm for the game.

 

We relax a little bit and signal for her to test her blood sugar before she takes the court.

What she tells us sends D-dad and I into complete PANIC MODE.

Her blood sugar was 60

 

LOW – DANGEROUSLY LOW – to be exercising – and that low after already consuming a lot of sugar ?!?!

Even LOWER than what we were seeing on our wrists – HOLY CRAP – I check her pump and see she still has TOO MUCH insulin active to consider it safe to take the court.

 

Before we can even react – she is on the court ready for tip off. The game starts.

D-dad and I are a barrel of nerves – watching her – watching our wrists

 

Thankfully we have a time out within the first few minutes – we signal for her to EAT MORE

Back to the game – she air balls 3 shots – NOT usual for her – she is NOT playing like herself and D-dad and I are worried..

REALLY WORRIED. 

D-dad starts to get up from the bleachers to have coach pull her from the game. Something we have never done – but were worried enough to contemplate doing it.

We decide to hold off as she continues to give us the thumbs up that she is OK. When blood sugars are moving so quickly – it can take Dex up to 20 minutes to catch up to real time blood sugar levels and display accurate numbers. She has had a sh*tload of fast acting carbs so I give her the benefit of the doubt and hope she is in tune with her body.

End of the 1st Quarter – she tests her blood sugar and it is headed UP – Phew – finally headed in the right direction. Back to the court and Eden playing much more like herself. That helps us to relax and enjoy the remainder of the game and even teach some of the parents on the bench a little bit about Type 1 Diabetes.

The best comment – “Eden has Diabetes?” – “We had no idea.”

Eden has gained a lot of respect over the years for her basketball skills. From parents, coaches and players alike. It has taken some time – but she has earned it.

• A GIRL – playing on the top boys team in her age group.
• A GIRL – who happens to be the leading scorer for her team for the last 2 tournaments.
• A GIRL – whose nickname is “The Dagger” because she nails 3-point shots in critical moments of the game.
• A GIRL – who referees come up to after the game asking her name
• A GIRL – who happens to have Type 1 Diabetes

 

We have to plan and account for T1D in every decision we make – especially related to basketball.

Sometimes plans just don’t work out and you have to go with the flow – hoping that T1D cooperates so that the show can go on.

Playing SO MANY basketball games this past weekend was a HUGE undertaking and challenge. 

Much more than anyone could possibly understand unless they lived the T1D life.

 

Not only does Eden battle the physical tiredness of being so active – but we deal with the emotional exhaustion from constantly being “on” and trying to be one step ahead of D.

I don’t necessarily want all of Eden’s team mates or the parents to know she has T1D – but seriously – it just makes her all that more badass on the basketball court because not only does she play her heart out each and every game – she literally juggles her life.

Type 1 Diabetes may constantly have us on the edge of our seats and dealing with it become our normal, but every time I pause and think about it. REALLY think about what T1D life entails and the struggles it poses – I think that the world should know.

 

I wonder what they would all think if they knew just what it takes to keep her alive every.single.day.?

Would she get a whole new level of respect?

She should… 

She is an amazing kid – basketball player – fighter – T1D warrior  – with so much strength and resilience

Because T1D life is not easy – Basketball with T1D is not easy – Eden just makes it look easy 

I guess we will see …

So all of you who read regularly know that basketball is a huge part of our lives.

Eden lives and breathes basketball 🏀❤️

 

Over the years she has had many different coaches – this always makes it difficult for me as to whether or not to even bring up the big “D” word. Some of them have been basically kids themselves – and I didn’t feel the need to put that on their shoulders – especially since I am always there.

 

They would see her test her blood sugar – some would question Eden – some wouldn’t.

I just learned fairly recently that Eden told one of them a few years ago that she had diabetes – but not the “fat kind”. 

out of the mouths of babes – hey – at least she told him 😳

 

anyway – the coach of her current team has known Eden for many years. He has worked on and off with her but not necessarily on a consistent basis. He knows she has Type 1 Diabetes – he recently joined and supported us when we were doing the JDRF Walk to Cure Diabetes in October. He actually missed a tournament game to support our family.. 💙

 

Last night was the first time he actually noticed that Eden has not “right”. She had missed practice on Monday night – something we NEVER do. If there is practice – we are pretty much ALWAYS there, and then some.. Missing practice was D related and he knew that so maybe it was on his radar? He was actually concerned enough to ask Eden if she was OK and to call out to me during practice to make sure she was alright.

 

She was – but she wasn’t.

Her blood sugar was high – very high.

 

• she was moving in slow motion
• she had a dazed look on her face
• she was not reacting to the ball or following instructions well
• she totally airballed a 3 pointer

 

After practice he called me – he reached out and I was so thankful.

He wanted to know and understand more so he could help.

To know that there will be another set of eyes watching out – helping Eden to put her health first is going to be a wonderful thing.

 

There is SO much to know and learn – what to say when you have to start at the beginning? 

 

this was my attempt

 

 

Type 1 Diabetes doesn’t and shouldn’t limit Eden – but it DOES very clearly affect her ability to perform at the best of her ability when her blood sugars are out of whack. Unfortunately that is more often than not lately. Even more unfortunately is the fact that Eden THINKS she is totally fine when she clearly is NOT.

 

I’m hoping the fact coach noticed – means that she will WANT to take more care and responsibility.

Diabetes or not – poor performace will see more bench time and less court time. 💔🏀

you would think that would be a pretty big motivator..

 

I guess we will see

 

 

 

Where to go from here …. ?

 

Eden has had a sleepover at a friends house ONCE since diagnosis, and it really wasn’t even a “friend”. It was the little girl next door, Eden was still a fairly new diagnosis and her blood sugar levels were pretty stable.

She is a 12 year old girl –

and has had ONE sleepover in over 4.5 years.

 

Girls like sleepovers but Eden always misses out.

We don’t WANT her to miss out – but it has always just been too hard – too stressful – and we didn’t have the support needed from kids parents. We obviously NEED to know that she will be safe.

 

Nighttime can pose some of the most unpredictable blood sugar moments… and be scary. And that is when you deal with it day-in and day-out like we do. I can’t imagine how a parent might feel when they might not have even heard of Type 1 Diabetes.

 

Eden is a pretty even-keeled kid. VERY easy going and usually just goes with the flow. She has always understood the sleepover thing and it never really bothered her too much until just this past weekend.

She is starting to get a close-knit group of friends. Friends who are getting together more and more often – and you guessed it – having sleepovers. Last weekend Eden was invited (at 4pm that day) for a sleepover. Unfortunately we said “no”.

She was upset – VERY upset..

She said it was NOT FAIR and I have to completely agree… it wasn’t fair.

Type 1 Diabetes isn’t fair.

 

It just wasn’t that cut and dry – I couldn’t just drop her off at a friends house in a couple of hours, where a parent really didn’t know what they were getting themselves into. It was going to take time – and be a gradual process. Even WITH Dex and Nightscout and us being able to monitor her remotely – there is so much more to it than that.

We all agreed that we would work towards a sleepover. That meant Eden doing the right thing – monitoring herself – checking her blood sugar, treating lows appropriately and dosing insulin as needed. Those things should be pretty routine by now – but when in the presence of friends – she can be very easily distracted and doesn’t want to have to stop what she is doing for her D management.

Those basic things are the first line of importance – then comes the night time management.

Eden herself doesn’t even realize how often we set our alarms to check on her during the night. She can sleep through finger pricks, even though some nights I have to use force and strength to find a hand that is wedged under her body when sleeping. She sometimes doesn’t remember being awoken to drink a juice or eat something when low.

We decided we would try having Eden set alarms on her phone to check on herself during the night. All she needed to do was look at her Dex – if the numbers were within certain parameters she wouldn’t have to do anything. Otherwise she would need to treat accordingly.

• First night – she didn’t set her alarms properly
• Second night – still not set properly

(good thing d-mom and d-dad were still on the job!)

 

Yesterday I commented to her that she shouldn’t be expected to do that during the week anyway. She needs her sleep for school – we could try over the weekend.

Last night I set my alarm for 12am – midnight..

The usual first time that I check on her.

Turning off the alarm, I rolled back over and looked at my Pebble watch – she was 98 and steady …

 

hmm… a little too low for sleeping – but I decided to let it ride for a little while as she quite often rises a little on her own and re-set my alarm for 30 minutes. In the meantime – the dog came in to our room and was whining. I tried to ignore it, but got up after a few minutes to let him out potty. While up I decided I may as well check Eden’s blood sugar.

Before I headed to her room, approximately 8 minutes after my alarm went off, I glanced down at my wrist and it now said 86

I got to Eden’s end of the house and could hear her alarm blaring.

She must not have turned it off. Her phone said 12.08 – it had been alarming loudly for 8 minutes. Her radio was also playing and she was dead to the world. SOUND ASLEEP.

Finger prick = 65

oh crap

I was NOT expecting to see that. Usually if Dex is off – it is off in the opposite direction..

Go to the kitchen to grab a juice.. She is EXTREMELY hard to wake up and does not want to drink.. It takes me a good few minutes to get her to down the majority of the juice box.

How do I not stress about a sleepover when THIS happened last night?

There was NO apparent reason for her blood sugar to have dropped this low. I was very excited and celebrating at bedtime – because she was 130 and stable ..

 

 

Now she was 65 and sleeping like a ROCK – through an alarm that was blaring. At what point would a low blood sugar wake her up? WOULD it wake her up? To date – she has NEVER woken on her own with a low blood sugar. I certainly don’t want to test the theory and not treat and see what happens..

I know we have to make the sleepover thing happen.. We HAVE to find a way..

Type 1 Diabetes cannot hold her back from doing things.. but last night was a PERFECT example of WHY sleepovers worry me so much.

SO – where to go from here??