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.

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,

And so it begins … insulin = life

My post the other day showed all of the medical supplies needed for D life..

 

Quite obviously the MOST important one is INSULIN..

 

Without administering insulin – Eden would NOT be alive..

 

Today I found these… 😢😢

 

Eden’s first insulin orders upon diagnosis the day our lives changed forever..

 

 

and….

 

her first food/meal diary where we tracked ALL the food she put in her mouth and calculated the insulin she needed to stay alive.

 

 

This was our FIRST DAY HOME from hospital where we needed to sink or swim – learning to measure, measure, measure and double check every single calculation before drawing up insulin and injecting it into our precious daughter. Any mistake could end her life – using the same thing that sustains it.

 

Finding these today brought me right back..

right back to those first few days of diagnosis and how incredibly scared and overwhelmed we were.

D parents everywhere are being sent home from the hospital with newly diagnosed children scared out of their wits..

Brains fried and overloaded with important life saving information.

Hands trembling whilst drawing up insulin to keep their children alive and hearts broken – shattered…

 

Type 1 Diabetes is a SERIOUS,

life threatening, incurable, auto-immune disease..

 

WE NEED A CURE

Endo Day – good news / bad news…

Eden had her endo (endocrinologist) appointment today – for those of you who haven’t read my posts about this before – it is our 3-4 monthly specialist doctors visit.

Eden has blood drawn for various tests prior to her appointment – at the very least to monitor her thyroid function and her A1C – which tells us her average blood sugar for the past 3 months.

 

Bad news – Her thyroid function is getting worse 😡

image found on Pinterest

 

Every visit over the past year we have been increasing her dosages – he seemed a little concerned as to why they were so bad.. We have had problems in the past with Eden skipping her pills – she says she has been taking them (not fake taking them and putting in the garbage) but now I am questioning it.. I don’t want to accuse her – but the doctor seemed a little puzzled and downright curious as to how Eden wasn’t extremely exhausted and fatigued all the time and why they were so terrible.

So… we will up her dosage yet again – monitor the pill taking very closely and try to make it a little more pleasant for her.. weird that she barely complains about all the needles she is poked and prodded with every day, but can’t manage a little pill…

 

Good news – Her A1C – did go down! from 8.7 to 8.2 – YAY!! 😃

 

basically her average blood sugar over the past 3 months was around 200..

not absolutely horrible – but still NOT GREAT by any means – I honestly thought we were doing much better than that.. boo..

 At least it went in the right direction this time.. DOWN!

 

He wants to make quite a few changes to her insulin pump settings and therefore insulin dosages – all of which I am not 100% confident with.. I need to adsorb the information and review them closely before making any changes..

Back to school tomorrow means our routine will completely change – he based his changes on the past 2 weeks which were FULL of activity and blood sugar numbers kept slightly elevated on purpose. And of course some crashing lows too which we tried very hard to avoid.. pretty tough with 6-8 hours of exercise in one day!

Once we get through the rest of this week and my head is a little clearer I will reevaluate.. I HATE making lots of changes at once, but need to trust in the fact that he knows what he is doing!

 

TOMORROW is another story all together.. First day of Middle School for my baby …

This momma has lots of things on her mind that is for sure..

Smiling outside – Crying inside …

 

Today I feel SO many mixed emotions..

 

It is the 4th of July – here in the USA – a day that marks independence, freedom and bravery.

 

It is the day our entire family has always used to celebrate Ally’s birthday together (she was 14 yesterday! )

 

 

It is also the anniversary of Eden’s Type 1 Diabetes diagnosis

It is Eden’s 4 year Diaversary today..

 

 

 

4 years ago today our life and world was changed forever

 

• 4 years of thousands of finger pricks to check blood sugar 
• 4 years of Eden needing a drug 24 hours a day to keep her alive
• 4 years of thousand of needles and injections – seemingly endless blood draws and doctors visits 
• 4 years of worry, tears, sleepless nights and the real fear that your child may not wake up
• 4 years living the roller coaster of emotions that IS Type 1 Diabetes

 

 

It also marks 4 years of Eden and our family living our life regardless of Type 1 Diabetes.

 

Maybe it is no coincidence that the 4th of July is her Diaversary date ?

 

Today we will celebrate our 4 years with Type 1 Diabetes and the fact that Eden is growing in independence – feeling a bit of freedom and no doubt her remarkable bravery living with this disease.

 

A very bitter sweet day where I will be celebrating on the outside but quietly crying on the inside.. I want more than anything for Eden and our family to be rid of this disease

 

Just as the USA gained freedom on this day – I would more than anything like freedom from T1D

 

Image found on FB

 

We NEED A CURE ….

 

 

Shame in a Name ??

 

A little refresher for those who have not been following my Blog for very long…

 

Type 1 Diabetes is an AUTO IMMUNE Disease

and is in no way, shape or form caused due to a lack of exercise, poor eating habits or obesity.

 

Due to the fact that is has “diabetes” in its name – those with T1D are often judged because of the what their illness is called. I do not EVER want Eden to feel ashamed of her disease because of its name….

 

Type 1 Diabetes is an invisible disease – you CANNOT tell by looking at a person that they have Type 1 Diabetes. Although diagnosis is most commonly in school aged children – it is also possible in babies, toddlers, teenagers AND adults. People DIE due to mis-diagnosis – LEARN the symptoms!

 

ANYONE can get Type 1 Diabetes

and there is NOTHING that can be done to prevent it.

 

The ONLY treatment for Type 1 Diabetes is INSULIN and I repeat it is only a TREATMENT – not a cure.

 

Type 1 Diabetes entails a lifelong requirement of fine tuning insulin needs, balancing blood sugar levels, counting carbohydrates and finger pricks… every.single.day.

 

I have caught myself recently telling people that Eden has a medical condition – instead of using the word “diabetes”. Sometimes it just seems easier, rather than getting the – But she LOOKS so good – or normal – or the blank stare and uncomfortable silence. I feel terribly guilty about this because it is my job as her parent to advocate for her and other Type 1 Diabetics..

 

WE NEED A CURE and I need to keep spreading the word

so the public understands…

 

would love it if you could all help me…