"We called him Tortoise because he taught us."

 A promise is a promise - it's tortoise time.  One of our family rituals, is playing Hide and Seek with 5 of the 6 reptile members of our family.  Well, just Seek really.  They are incredibly good at "disappearing", sometimes only letting us find them after a few days.  I love how when they know they have been found, they simply stop, completely still, and retract their heads into their shells.  It's the "if I can't see you, you can't see me" defense mechanism that a lot of species, especially humans, employ.

This is Olaf

  Speedy keeping safe

So - some introductions:  Thadeus (who strictly speaking is a Thadea) grew up in Andrew's childhood household, and has been part of the family longer than I have.  She is a gentle soul, a bit of a leader, confident and comfortable in her own shell.  Speedy was rescued by my sister when he was so very tiny.  A dog had damaged his shell in several places and so he is more vulnerable and
exposed.  He hides a lot, and is skittish, and is only just now venturing further into his fynbos buffet garden.  Tolstoy - you have already met - and Olaf are the babies of the group, and heart meltingly gorgeous.  Tostoy is the tiniest, and the friendliest of them all.  Olaf is the best hider of the group. And then there are Bruin and Brown.  These two were rescued from a boutique hotel that was closing, and rehoused with us by American friends who were staying there and concerned for their well being.  Bruin is an easy going, get-on-with-everyone type.  Brown is not.  He is so aggressive that we have had to give him a separate patch of garden away from the others.  Every now and then we try to integrate him back into society, but his physical aggression is nasty, and he tries to hurt the others.  He hisses at us, and clearly had an unhappy childhoood.

TD once had to wear a tortoise for a week. Before technology had become so sophisticated and accessible- way back in 2017- TD's endocrinologist was worried that some hypoglycemic events (low glucose) were being missed and this could put TD's life in danger.  So she attached a "tortoise" to TD (her terminology, not ours).  This was a closed system Continuous Glucose Monitor, meaning it gathered and stored glucose information in the sensor, but was only read by the endo at the end of the trial period .  She could study the data, together with a food and activity diary, and give feedback.  These days, technology has moved so fast that the CGM gives immediate feedback, and TD can adjust her insulin accordingly. The 2017 device was called a tortoise because of it's shape.(and to make it less scary to children....)  And maybe because of the slowness of getting data.

I know tortoises are thought of as slow animals, but in my experience, if they want to, they can rumble over rough terrain at quite at pace.  Aesop's fable of the hare and the tortoise has the slow and determined tortoise plodding on to win over the overconfident faster competitor.  Consistent effort leads to winning the race is the supposed moral of the story.  But life isn't a race to be won, is it.  And we are not competing with anyone.  Diabetes has taught me that there are times to be slow and methodical, and there are times when speed is essential.  Yet again, it is all about balance and context, I suppose.

If you want a fix of gorgeousness, we can organise a Zoom meeting between you and a tortoise....although for most of the meeting you may just be staring at some fynbos, until a tortoise appears.  Trust me, it's not a bad way to spend an afternoon.

Thadeus

 

 

 

 

 

 

 

 

The MiaoMiao

TD is sitting on the edge of the bed, holding a clove of garlic as if warding off evil spirits or fleas, and we are discussing this blog.  I initially was going to tell you all about the MiaoMiao, but she thinks it is too soon.  So she was suggesting other topics :  the garden, Andrew and my 30th wedding anniversary,  tortoises, our mother/daughter relationship, the weird dreams we had last night, arum lilies and water systems of plants.  Meanwhile Andrew is bringing freshly baked cheese biscuits for us to sample  - they are delicious - and I realize that there is beauty in the mundane.

So - the MiaoMiao.  This strangely named device is new to our household, so maybe TD is right - it is a bit soon to write about it, but I will give you some background.  TD uses the Libre Monitoring System for measuring glucose, and it has changed her life.  It replaces the 12+ finger prick tests she had to do for all those years (can you imagine inflicting that sort of pain on your child day after day, year after year with no possible holiday to let her fingers recover?) The Libre is a sensor that is placed on her upper arm and has a filament that sits 5 mm beneath the skin to measure interstitial fluid.  It needs no calibration (finger pricking) - unless something major is going on, and it reads the glucose every 5 minutes and can be read via a hand held scanner.  The sensor gets replaced every two weeks. Sounds good, doesn't it!

 Libre sensor and reader    

 

     But the thing the Libre does not do, is alert TD (or us) if she is in danger.  And not to hammer home the point, but all type 1s live with the daily danger of losing consciousness and going into a coma.  Hyper vigilance is key to good management and safety, but I am sure you can imagine how exhausting that can be over a sustained period. 

Introducing the MiaoMiao.  This device sits on top of the Libre sensor and has a Bluetooth connection to any smart phone.  Several apps have been developed which interpret the data that is conveyed from the Libre through the MiaoMiao and onto the phone.  And it sends out alarms when the glucose is too high or too low. 

The MiaoMiao sits on top of the Libre Sensor

We are still figuring out all the processes  and best usage.  One of its strong points is that it can be used as much or as little as liked; TD is using a sweatband to hold it in place, so that she can take it off  and put it on with no fuss. Andrew and I have been routinely checking TD's glucose at around 2am, and an alarm system will allow us to sleep longer and respond to emergencies.

Not yet, of course.  We still need to learn how trustworthy the device is, because complacency is not an option.  There have been a few hiccoughs - The Libre readings (which we trust) and the MiaoMiao readings have not always correlated - sometimes being wildly different. 

TD is happy to try this new tech.  She was delighted with how small the device is, and the ease of use.  She does not want us, as parents, to have constant access to her glucose numbers, so the app is on her phone only.  We respect that.  

It is early days.  We are holding thumbs this will be a great success and that technology will do some of the hyper vigilance for us.

And the idea of writing about tortoises is growing on me, so to whet your appetite for the next blog, here is a picture of Tolstoy for you: 

Tolstoy the tiny tortoise

 

 

 

 

Holidays, henna and poetry

 Last week, TD and I were discussing some of our favourite sayings and/or quotes. One of mine is the first line of a poem by Gerard Manley Hopkins : " The world is charged with grandeur of God."  I love the energy and responsibility that single word, "charge" gives.  We have just returned from a 5 day break in one of the most beautiful places in the world.  Sedgefield is a sleepy village along the East coast of South Africa, and has been a second home to my family for all of my life.  I think Manley's poetry is fitting for such a splendid place.

Sedgefield reflections

As children, my siblings and I would stroll down to the lagoon, fetch firewood from the surrounding wooded areas to makes fires, pump our own water out of the ground, and read by paraffin lights once the sun had gone down.  These were simple holidays, where the important stuff was the rhythm of light and darkness, high and low tide, and using resources with care.  All of this has been replaced, many years ago, with municipal services of electricity and water, shopping centres and huge expansion.  Beautiful places attract crowds.  And yet, for me, the delight of Sedgefield is the nostalgia of a different, alternative type of life.

This short holiday was even more meaningful, as R is here for a few weeks from the UK.  The four of us have not all been at Sedgefield together for a very long time.  We spent many hours on the stoep, playing variants on the game Bananagram, eating simple, delicious food, reading and chatting.  We went to the beach and swam in the sea water gently rolling into the lagoon. We shopped at the farmers' market and walked every day.  It is a poetic sort of place.

Andrew got poetic too, in the form of henna art on TD's arm.  Henna is a perfect medium for trying out body art, as it fades and disappears within two weeks, leaving space for new ideas or back to school regulation art-free arms.

Andrew is very good at this sort of thing and asked TD what she would like have drawn on her this holiday. She chose a full arm design to feature her CGM.  Technology can be body art too, and TD wanted to embrace her uniqueness.  So the centre of a flower is her CGM censor, with petals radiating out from it.  That is sort of how diabetes management works - the glucose number is at the centre of everything, and all other treatments and management radiate from that number.

Too high? - add more insulin.  Too low? - give more glucose.  Too stressed? - work on calmness.  Too tired? - sleep. This was the holiday of LO appearing on the sensor reader - TD went so low several times it didn't register on her CGM at all. This means her glucose number was below 2.2. This is not safe.   The rest of TD's arm has other important information about her in henna: where she lives, her name in code, a "this way up" arrow and other such vital details.  For good measure, Andrew added a traditional anchor and a "I love Mom." and of course, it goes without saying, a dragon. 

Instead of hiding the CGM, TD decided to celebrate it.  Diabetes (or any illness) does not need to be covered up.  The pancreas is not going to heal itself, so she might as well deal with the fact that she will forever need to monitor her glucose and celebrate that technology can help her.

TD's quote last week was "How lucky am I to have something that makes saying goodbye so hard."  This was written by A.A. Milne and said by Winnie the Pooh.  It is smart choice of wisdom for a 16 year old to cherish.  I think that is how we all felt when we left Sedgefield on Monday to come home to do the Christmas preparations.

It's a nostalgic time of year for me, and as we round the corner into the last week of 2019, I intend looking for poetry in every undusted corner of my thoughts, every smile, and in all the kindness that is dispensed at this time of year, so that 2020 starts with a sense of gratitude. And may we all be charged with the grandeur that is around us.

Hello World

Well.....it's been a while.  When I sit down to write, something whispers in my ear that I should be doing something else.  Procrastination is an art, if properly done, and needs practice to perfect.  I am getting there.  In the meantime, TD has become my Digital Media Manager and has signed me up for Facebook.  Who would have thought I would ever venture willingly into such a public space.  To be honest, it is not under my name, but I can use it as a vehicle for telling the world  about a little cottage industry I am dabbling in, so there are no personal revelations about our household.  No, I do all of that here, in this blog. (😏) TD is somewhat of a pro at this social media stuff,  and takes very nice photos to add to the presentation. Arty.  Different.  Creative. Expressive.

It is exam time again, so TD has removed herself from Instagram for the duration of the study period. (and she does not do Facebook.)  She needs to sleep.  Digital distractions are time consuming, so I am pleased that she made the decision to limit them, and concentrate on what needs to be done.

Not to overemphasize this whole sleep thing, but it really is getting to crunch time.  Like eating and expecting your pancreas to compensate for your carb intake, we often take sleeping for granted as an expected working body function.  T1 is vicious: it not only restricts your sugar intake, it also restricts your sleep patterns.  It is not safe for TD to sleep 8 or 9 straight hours without testing her glucose level.  My alarm is set for 2am every morning.  Things are easier with the CGM (Continuous Glucose Monitor) as TD does not have to do a blood test.  It is a quick swipe of her arm, and hopefully she doesn't even wake up.  If things are wobbly, I check her again at 3.  And then I make a judgement call if it is safe to leave her until the next reading that Andrew does at 5.45.  Most nights are fine, but the few nights when we pick up lows remind us that we cannot get complacent. It is a matter of life and death.

 This Sunday the cashier at the local Spar generously gave us a pensioners' discount when we went to buy ice creams after a wander/bike ride around the neighbourhood.  Clearly we look a bit older than we actually are . And when you are a teenager that might be considered a compliment, but at my stage of life it signifies a certain need to schedule more sleep :)

The year is winding down.  Soon we will all be able to exhale, get into holiday mode and allow ourselves the space to rejuvenate.  And sleep of course.

But let's not get ahead of ourselves.  There is plenty to do now.  TD needs to update the Facebook page, I need to find some more creativity. We all have projects to complete. We need to be Arty.  Different.  Creative. Expressive.

Strength to you all, as we gallop towards the Busy Season.  May you be sure footed, and stride over the hurdles with ease.


 

My windswept look at the last craft market! If you want a closer look the Facebook page is called Reflections Glass Pendants

Snow White and the 7 Diabetic Dwarfs

TD recently wrote a play about the damaged characters in the fairy tales that we tell our children:  Pinocchio the compulsive liar, Goldilocks with her sense of entitlement, Rumpelstiltskin who has anger management issues...and a few more.  It had a clever setting - a group therapy session - and a good take-home message:  should we still be telling very young children about these dubious characters, or should we rather affirm good morals of real life heroes?

She did not include Snow White as one of her characters, but I think the story deserves some of our attention.  How about Snow White and the Seven Diabetic Dwarfs.

They are, in no particular order:

Sleepy:  A character that needs no introduction to any one in this day and age.  Life is frantic, full of things to do, people to see, YouTube videos to watch... Who can honestly say they consistently get their recommended 8 hours of shut eye? People with T1, and their families, often get less sleep than most - blood sugars need to be tested during the night.  It is easier now that TD wears the CGM (Continuous Glucose Monitor) because at 2am all I have to do is hold the sensor to her arm and check she is "in the zone" (see previous post), correct if low, ignore if a little high, and waddle back to bed to sleep a bit more.  Before the CGM days, TD had to wake up, prick her finger, do the blood test and then proceed with the next steps. CGM for the win!

Grumpy:  Following straight on from Sleepy, we have Grumpy.  It can be hard to function optimally on disturbed sleep, and grumpiness is often a by product of tiredness. 

Dopey:  This is another effect that Sleepy has on us. If it has been a long night, I sometimes walk round in a fug of forgetfulness. I know there is stuff to remember, but I just can't figure out what it is I am forgetting.  The extra testing kit?  Buying more Super Cs? Changing the needles on the pens?  Luckily most of that has become habit now, and the things I forget are less important...like where I left my glasses or how many cups of tea I have consumed...

Sneezy:  Do you also sneeze when you are tired?  It seems to be quite common.  TD takes Allergex nightly to alleviate the symptons....if she forgets, her eyes water, her throat itches and she sneezes.

Bashful:  There are only a few situations where TD prefers not to inject insulin in public spaces.  Mostly she has this Bashful thing under control.  Of course, dresses, dungarees and other clothing that make injecting into the stomach for fast acting insulin impossible, are a problem, and TD excuses herself to inject.  (Never inject through clothing, in case micro fibres are pushed under the skin, leading to possible infection....)

Doc:  Every T1 family's favourite of the Dwarfs.  It is so important to have a good medical team to partner with.  TD has great people on her help list : the endocrinologist is great, the GP is wonderful and most other medical practitioners are kind and understanding.  Quite frankly, if they are not, it is time to move on.  Trust is a huge Doc issue.  We have been very fortunate in the people who help TD.

Happy: Sometimes the challenges are overwhelming, but it is important to allow ourselves to be Happy.  Not all the time, obviously.  Adversity is a great teacher, but happiness is a state that I need around me.  I am happy to be able to share my life with the people I love.  I am not happy that TD has diabetes, but I am happy that she is TD, and that seems to include diabetes, so that is just how we roll.

Fairy tales are flawed.  Snow White is not a particularly positive role model for children today.  I reread the story to refresh the details in my mind, and the whole beauty fixation/role of females/ being saved by a handsome prince  sticks in the throat a lot.  But, seeing as we are all flawed too, perhaps it is important to retell these tales to our children and embrace the notion of happy ever after.  Stories give us a chance to explore villains and heroes, right and wrong, real and fantastic.  The 7 dwarfs are an odd bunch, but rather relatable don't you think!

The Seven Diabetic Dwarfs

Epic Fail

If something stops working completely, that is a clear indication that something is wrong or it is broken.  But if something still functions, but gives incorrect data that looks feasible and correct, that is an epic fail. That is what happened last week with TD's Continuous Glucose Monitor (CGM), and I was not best pleased with that piece of technology.

Late Wednesday night/ early hours of Thursday morning, the CGM graph line looked astoundingly impressive.  The number were in the perfect zone (5 -6) and the line was steady, flat and consistent.  But then things took a dip for the worse, and TD's glucose plummeted to the 3s, then 2s  (so the graph told us later...) and finally when Andrew did the 6am reading, the display just said "LOW" i.e. no positive number at all.  That means that TD's glucose level was so low that she should have been unconscious or dead.  But she said she was feeling fine.  Talking is definitely a sign of being undead, so that was reassuring for us.  She ate Super Cs, and then she tested using the old fashioned way - by pricking her finger and testing the blood sample.  This reading said her glucose level was 12 - a little high, no doubt from those Super Cs.  We compared that reading to the new techno CGM.  It came up with 2.6.  You can see the problem - this is misinformation at its worst.  The sensor in her arm continued giving false readings all day, until TD decided to rip it out, as it was causing more worry than it was worth.  (And it is worth quite a lot - each sensor, which is supposed to last two weeks, costs just shy of R1K).

Symptoms of a severe glucose low (hypoglycemia)

We waited until the usual switch over day - Saturday - to replace the sensor, and touch wood, it seems to be working fine.  When it read 2.3 today at lunch time, TD really was horribly low, shaking, unable to function and felt awful.  It really was an emergency.

Sometimes I think we rely on technology too much.  TD's reason for delaying the use of technology and the CGM was so that she could learn to listen to her body more. And that has served her well.  She knew she wasn't low on Wednesday when the meter told her she was, and she knew today that she was in trouble, and for that I am very grateful.

It shook me up a bit.  We have to trust this technology to know what TD's body is doing, so malfunctions confuse me and knock confidence levels.  I needed to keep an eye on TD last Thursday - I didn't trust the universe at all that day.  It was a school free day (exams) so she and I had a quiet day here.

I wonder about my own life at times.  I need to function optimally - not display false readings of situations or misjudge which direction things are going.  Writing has become my old fashioned way of checking myself.  It is like fitting a working sensor. And new technology allows me to connect with a community.  Your reading my blog encourages me, and I thank you.

Fuzzy lines

Ed Sheeran toured South Africa last month.  TD and friends, being star struck fans, had booked tickets last July to see him live in Cape Town.  She (and Andrew) enjoyed the evening very much.  I mention this only because we had double booked the date.  TD was meant to see her (still wonderful) endocrinologist on the same evening as the concert. Dr M agreed that it would be more difficult for Ed to change his dates to suit TD, so she graciously rescheduled the appointment.

I find some doctors intimidating.  But Dr M is gentle, kind, compassionate and an intuitive listener (as well as being an expert in her field).  Despite this, sometimes my heart feels a bit heavy as we troop into her office.  TD's glucose numbers, as you will have gathered from recent posts, have been on the high side. Visits to the endocrinologist are about every three months, and the Hb1c test (that measures the average glucose levels over a three month period) is used as a benchmark of sorts as to how well the diabetes has been handled in between visits.  At the end of 2018, before the CGM, it was 7.5 - significantly higher than the golden standard of 5.6 to 6.6.  This time it had crept up to 7.9. To be honest I thought it would be higher, but this is still damagingly high.  There is no judgement regarding this number.  I know that. And yet....   And yet I feel I should have done more to help TD with the diabetes control.  Of course, the number is a tool to see how the sugars are being handled and to work out systems to achieve and maintain better control.

Tresiba Insulin pen

Dr M suggested we change the type of long acting insulin.  Not all insulins are made equal, and continuing research is providing better formulations of insulin.  The one the endo suggested is called Tresiba, and it is meant to be the most effective for steadying the glucose line.  It sounded  just like what TD needs.  It is also more tolerant of fuzzy times - it is given only once every 24 hours, and if that stretches to 27 hours that is fine too.

You know what this means!  TD, Andrew and I sat wide eyed and open- mouthed thinking about the possibility of sleeping later than the usual 5.45 am that has been our pattern these past 4 years.  Think of weekends and holidays!  Think of a morning lie in!

Of course, the main reason for changing is that it should help to stabilize TD's glucose numbers.  The roller coaster Ups and Downs impact her everyday life in a way that most people cannot comprehend. Here's hoping Tresiba is a great leveler.

Fuzzy clouds.....because why not!!

I called this post fuzzy lines because another thing our visits to the doctor emphasize is that, although it is definitely TD 's diabetes and her need to handle it, we, as her parents are partners with her in her health and happiness.  So the lines become fuzzy.  Diabetes is part of all our lives.  We have always tried, and continue to try, to give TD as much independence as is safe and as much privacy as is possible.  The boundaries between children and parents are sometimes rather blurry - we want to hold them close and let them fly all at the same time.  Those blurry lines contain so many pixels of infinity, so many shadows of experience.  And the squiggly shape of those fuzzy lines is a complete circle of  love.

I will let you know how the new insulin works.....after my Saturday lie-in.

Odds and Ends

Today is one of those odd days, after the festivities have ended,  the new year hasn't quite begun and we have said another goodbye to R after his short Christmas holiday. Things feel a bit hollow and tired.  The tired bit may well be because we packed a lot into our time together as a family.  We went to a couple of shows, a movie, an archery day, ate far too much, shared time and laughter with family and friends and generally feasted well.  The nagging sadness of not having Mom around to share all this is hard to get used to.

There are other moments of thoughtfulness during this traditionally "happy season".  TD's T1 diagnosis was 4 years ago, just before Christmas on the 22 December.  Each year it seems to stop me short, both in gratitude that she is OK, and sadness that she has to deal with diabetes forever.  This year on the 22 December we were at the theatre, watching the most magical musical - Matilda.  It is a wonderful production (do yourself a favour and get tickets if you can !!)  Based on the Roald Dahl story, the young Matilda is enveloped in love and support by her teacher, Jenny Honey.  One of Miss Honey's songs is about having the courage to face up to people and situations that are difficult and unpalatable (She sings "Just knock on the door, Jenny" when she needs to confront the head, Ms Trunchbull, and is too scared to enter the office.)  I think that might be a good motto to start the new year with - just knock on the door.  It's a start, and often what's behind the door is not as bad as the anticipation of setting things in motion.

I think this is how TD feels about the CGM.  She has been wearing the Continuous Glucose Monitor for three weeks now.  The sensors last two weeks each, so although the endocrinologist showed us how to "click" the sensor into her the first time, the switch over was a little nerve wracking.  But it really is quite easy.  It comes in a kit with a sort of stamp or punch which pushes the filament into the interstitial fluid.  It sits on her upper arm, and -here's the best bit- it needs no calibration, so TD has not had to do a finger prick blood glucose test in three weeks.  That alone feels like a huge liberation.  She holds a reader up to the sensor and immediately can see not only her current glucose level, but also the patterns emerging from all the data AND the reader indicates if her sugars are going up, down (or are stable) and how quickly.  Seeing the trends is the big plus so that we can work out what works best for TD.  This is a door I am glad we knocked on.

The Libre Freestyle CGM in action!

So the year ends, and for me it has been an odd one.  The good bit about feeling that things are a bit hollow at the moment, is the potential to fill that hollow gap with whatever we choose.  I think making happy memories makes the most sense - everything else is fleeting and transient.

And with philosophical thought I will end my odd year and wish you all a very happy, memory creating 2019.

Footsteps

A sandy beach is the perfect place for gentle footsteps.  For a change of pace, I decided to take TD and her friend off to a beach.  We had to collect some pottery we had painted a few weeks before, so it seemed liked an excellent opportunity to go for a stroll on Hout Bay beach.  The girls raced to the water's edge, revelled in dipping their toes in the water, managed to persuade me to join them in a long jump game, and made "snow balls" from wet sand.  I went with no agenda, but found myself relaxing into my own pace and just enjoying my surroundings.  My Mom always liked a walk on the beach "to blow away the cobwebs."  I understand what she meant - the sound of the waves, the breeze, the feel of the sand and the wide open spaces are excellent antidotes for a busy mind.

When TD and her friend decided to climb some sand dunes, I opted out, and left them to it.  I sat and watched them from a distance, next to the nearby lagoon.  There was a flock of seagulls on the other side of the water.  Near them was a mass of something I couldn't quite make out....until I saw some movement.  The mass was a huddle of chicks, being watched over by the gulls nearby. Every now and then, one of the chicks would tentatively walk to the water's edge.  A few tried out their wings on short flights, and a couple tried to catch a fish. (one managed, but the fish was large and the bird dropped it!)

I was fascinated.  I spent a long time watching and wondering if the birds felt exhilaration at learning new skills (or feel anything at all).  I wondered if they used logic to figure out that flying into the wind is difficult, and the best course of action is to stop trying and glide with the air current (or is it built in instinct...) .I  enjoyed letting my mind float aimlessly.  It felt like a freedom to sit and watch properly for a while and not rush off. The whole scenario just seemed poetic to me.

I was, of course, keeping an eye on the girls too.  They were rolling down the dunes, burying their legs in sand, chatting and laughing.  Like the senior gulls, I was close enough to make sure of their safety, and far enough away to let them do their own thing.

Knowing how far away to sit as a parent is a bit of a skill.  Sometimes we need to hover closely and other times we need to let our children fly alone, even against the wind.  TD is tentatively dipping her toes into new waters, by trying out a CGM. (Continuous Glucose Monitor).  She has always been reluctant to use wearable technology, so last Saturday's appointment with the endocrinologist is a flight of freedom for her.  But as it is early days, I will write about that another time.

In the meantime, it is that time of year when we seem to endlessly plod through the shopping malls  and other (symbolically) hard paths.  Be gentle on yourself, and if you can, find a beach to enjoy soft footsteps and sand between your toes.

Magical Science

The Science fiction author, Arthur C Clarke famously wrote :"Any sufficiently advanced technology is indistinguishable from magic." I think I know what he meant.  There is a specific blood test that - magically/ scientifically - can give a measure of the average blood glucose level during the last three months. The science part is that it measures how much glucose binds to the red blood cells, and red blood cells circulate around your body for about three months.  The magic part is that you can prick your finger, take a blood sample and three minutes later a magic box prints the information for you on a sticker.  This is called the HbA1c test.

TD visits her endocrinologist about every three months and this is one of the tests and checks that keep her safe.  People like me who are lucky enough to have a functioning pancreas, should have a three month average of  of blood glucose of between 4.5 -6.5 mmol/l. And that is a yardstick for diabetic control too.  But it is not that simple.  TD's last HbA1c result was 6.6.  This is good - it means that high sugars are not doing long term damage to kidneys, eyes and nerves.  But the endocrinologist was a bit nervous, as some of TD's daily readings had been quite high (exams, feeling ill, teenage hormones - the usual culprits of high sugars!!), so where were the lows to give such a satisfactory average?  Because TD is not wearing a CGM, we only have the information from her finger prick tests to work from - all the times inbetween are a blank page.  Undetected lows are a problem.  They are scary.  Could TD be going low in the middle of the night, and if so - how low is she going?  We need to know.

The options were either to wear a CGM for a few weeks, or for us parents to do the 2am tests for a while.  TD chose the latter.  So far, so good - no middle of the night lows (a 5.6 last night which meant she could have nighttime chocolate to see her through to morning...).  But this method of testing does not give the full picture.  For that, TD will have to let go of her fear and dislike of technology and wear a monitor for a while.  

Science and magic is not such a strange combination.  I think one sparks the other, creating an environment where imagination triumphs.  We need both in our lives - solid facts to ground us and tell us our boundaries, and a little magic to enable us to dream of different futures and keep us company on the 2am shifts.  



PS: Arthur C Clarke also said  "The only way to discover the limits of the possible is to go beyond them into the impossible".  Doesn't that sound like a T1 journey?

Tech and the teenager

TD's (Teenage Daughter if you haven't been introduced yet) wonderful endocrinologist wanted more detailed analysis of TD's glucose levels and fitted a CGM (Continuous Glucose Monitor) on her for ten days.  TD has strong opinions about many things including, but not limited to, politics, music, sexism, gender labels, religion and CGMs.  She strongly disliked wearing the device and tried to explain why to me.  I think I got the gist of it.  She says it feels as though it makes her less human, more machine.  It has something to do with technology ruling her life.  (This from a teenager with a hearty interest in Pintrest, Whatsapp and YouTube on a tablet and smartphone....)  But she agreed to wear the device.  Strangely, far from reassuring me that her glucose levels were being constantly monitored, I felt more anxious: FOMO in the World of Diabetes.  Perhaps I felt the need to constantly check the device because it was a new and novel tech for us.  It makes so much sense to have a CGM, and probably, an insulin pump.  For some people, this is the best way of dealing with diabetes. Some people prefer manual injections and testing.  It takes economic privilege to try all the new technology available - none of it comes cheap, and medical aids seem more than a bit reluctant to cough up.  (Unless your experience is different - I would love to hear about it...)

I think TD might come round to the new neater, easier to use CGM that the endo has suggested.  I am hoping so, to give her fingertips a chance to recover from the ten or so tests she currently does daily.  TD has set some rules - she wants to have control of the reader, so that she can see what her body is doing before others know.  It is the same rule we apply to manual testing, and makes complete sense to me.  TD needs to be in control of her own health, and this small rule puts boundaries in place :  It is her body and her glucose number.  Respect, TD.