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.

Feedback, as promised. And Mothers' Day stuff

It is early days - 17 to be precise - so this feedback about how well the Tresiba is working, will be short.  We all love the longer dosage period.  There have been some (but by no means all) wonderfully even night glucose numbers.  TD is still running high.  Overall, I am hopeful, although I should probably lower my expectations.  Tresiba is not a magic wand, and all the usual suspects - logic, vigilance, calmness - need to come to the party. I will report back when there is more data....

....but in the meantime, I have been sunk into the thought bubble of mothering. (Again.)  This time is has been prompted by Mothers' Day which we celebrated on Sunday.  It was the first time in many years that I didn't cook a thank you lunch for my own mother.  Being motherless loomed large.

My own family treated me with wondrous indulgence and kindness.  Most soul feeding was the card with words I treasure from my two children.  TD organised the whole thing, as her brother is (still) overseas.  I read it and glowed from the inside.

For lunch, Andrew had decided on a trip down memory lane.  In our youth, we enjoyed getting take outs from a Greek restaurant in Sea Point and would eat watching the sea and avoiding the loudly demanding seagulls. The restaurant, Ari Souvlaki, is still in the same place.  There are such nice people in this world.  The owner showed his freshly baked trays of puddings, and asked me which I would like for a mothers' day treat. They both looked delicious.  I chose the milk tart pastry but he scooped one of each type into a container and handed them to me with the kindest smile.  Such generosity almost overwhelmed me.

Because that is really what mothering is all about I think: Generosity and the giving of oneself.  Mothering is not confined to biology, and there are many people who have mothered me in some form or other.  Many who have played (even if they don't know it) pivotal, key, life nurturing roles that I have relied on when I have needed extra courage. I appreciate you, even if it seems I sometimes take you for granted.

Mothers, I think, should be taken for granted.  Children should just be able to assume that  Mother is their backdrop and safety net.  It doesn't need thanks or acknowledgement or come with expectations.  My children owe me nothing - and I owe them the best I can offer.  That is how parenting works.  And that is why when my children do write lovely things to me in a Mother's Day card, I bubble inside and feel that all is right with the universe.

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.

Our Road Trip in numbers

Number of nights away: 6

I am not sure how long it takes to really unwind and relax.  Certainly this holiday felt like air rushing into our lungs after a somewhat frenzied and stressful period.  Going away is a good idea, as everything is different and new, and the mind can reset and refocus.

First night was in Swellendam

Number of mountain passes: 27

This may sound like an extraordinary high number, and it is.  This was the holiday of Passes and at times it seemed our whole world was a series a ups and downs.  Well, truthfully, it was.  And is.  If I were to create a diagram of the roads in linear form, the ups and downs would look similar to the graph of TD’s glucose numbers for that week.  Maybe there is even a correlation between high altitudes and high glucose readings.  I will do some research….

Number of glucose highs: 52

That's is almost twice as many highs as passes....and not good.  Long term highs cause damage to the body.  It is extraordinarily hard to keep stable glucose numbers on a travelling holiday.  Consistency is the key to good glucose control, (eating the same number of carbs, exercising the same amount etc so that insulin can be matched).  This road trip, the meals, travelling and excitement all contributed to higher than average levels.  It is a good thing it was just for a week.

Number of tyre changes: 3

Rough roads come with certain possibilities, including tyre damage.  Our first flat was on day 2 in the middle of nowhere (well actually on a single-track dirt road seldom travelled by anyone since the Voortrekkers ).  There were many farm gates to open and close, and TD stood in among a herd of bulls and told us the back right tyre was completely flat.  It was midday, very hot and the road had been long.  But there is no point in getting upset about something that had already happened. Andrew set to changing the tyre.  It was lunchtime, and no destination was in sight.  There was nothing to do but grab the bread and Nutella and jam from the boot, find the grapes and put together a make-shift lunch.  Diabetes is not a patient restaurant patron.  We always travel with food, because you never know….

 

The next tyre change was at the top of the Swartberg Pass.  TD raced off to climb rocks, as she always does when the car stopped long enough for her to jump out.  This time the tyre belonged to a young Belgium couple who looked rather forlorn about their rented car letting them down (literally).  So Andrew changed it for them while they looked on in wonder.  When we saw them off with a cheery wave, we were not that surprised they had burst a tyre, as they were driving way too fast and recklessly.  We assume they made it to Prince Albert safely.

TD disappeared to climb rocks...

The third tyre change was outside Carlitzdorp on the way home……

But that wasn’t the end of car troubles.  My sister was travelling with her family and the dog to their holiday when the clutch packed in.  Luckily we were in the area.  Cars can be needy machines.

Number of pairs of jeans worn by TD: 1

I woefully underpacked in my rush to get away.  TD did much better, and had an outfit for every occasion.  She had smart striped trousers for our restaurant outings, dungarees for dungarees days, but she chose - and it became a joke- from day 3 onwards - to wear her black jeans for at least some part of every day.  They were more like gray jeans by the time we got home....

Number of hours spent with wobbly legs: 2

A magnificent complete stack (when the stalactites and stalagmites touch)

During supper at a lovely restaurant, Nostalgia, in Oudshoorn, we were chatting about this road trip and plans for the rest of the week.  We had already done so many exciting things (the rest of this blog refers). That very day, we had been to the Cango caves – a magnificent 4km of geological wonder in the Swartberg mountains.   En route to the caves we saw a zip line adventure, and over supper, by candlelight because of the romance of load shedding, it seemed like a really good idea to give it a go.  And being the decisive people that we are, Andrew went online and booked right then and there.  So that gave me the whole night to fret about ziplining. The next day I was unsure if I would hold my nerve and actually do it. As we set off back to the Cango caves   TD and Andrew were both kind, encouraging and happy to let me work this out for myself.  And because of that, I found myself suited up and listening to the safety instructions.  What a rush.  The middle bit (i.e once you have let go of terra firma, and before you see the wall it looks you will slam into…) was an amazing, wonderful mid air feeling of freedom.  But I felt my legs shaking uncontrollably.  And they stayed that way for a good two hours, even with some medicinal carrot cake and tea.  The body has its own agenda, and we should respect that.

Highest Glucose reading: 22.2

TDs body’s reaction to the adrenalin rush of ziplining, was to release glucose into the blood stream.  This caused a soaring high of 22.2.   Diabetes can be a really good educator as to the effect of stress/excitement/strain on the body, in that the numbers are right there for the reading. My legs wobbled, her glucose soared. Andrew was unscathed.

Number of eccentric locals:1

One of the pleasures of travelling is meeting people on their home turf.  Our second flat tyre happened 11 kilometers outside Calitzdorp, and just outside an art studio on a small holding.  We were seasoned experts at the whole bust tyre things, so TD and I efficiently unpacked the suitcases from the boot, extracted the spare tyre and rolled it to Andrew who was winching up the car. We were parked on a dust road next to a rustic, wire covered wall.  The wire was Art, recycled from scrap.  The wall had a couple of pithy sayings on it.  One said "Look how far I have come in life to realize what is wrong with me.  Thanks to all the people who have helped" .  It made me sad that someone should consider themselves damaged, even if they were grateful to friends for helping them.  Just then, along came a man in a straw hat and his dog.  As his dog left his welcome scent on the wheel that Andrew was working on, and after this stranger had kindly offered us coffee, I asked him what the writing on the wall meant.  But he turned the question back on me and asked for my interpretation.  I sensitively and thoughtfully told him that it dismayed me that he thought he was damaged goods.  Boy, had I got it wrong!! It was, he said, a sarcastic, contemptuous comment to those people who find fault with others. Umm.  Quirky indeed.  And as he was not offended by my very wrong reading of his sign, he gallantly offered to show us his gallows. We followed him into his property (through a gate with the sign “Please ring the bell to avoid being mistaken for an intruder and shot.")  And there next to a gorgeous lake, in a beautiful mountain valley was what he described as his folly – a real gallows.  It was macabre and rather unsettling. And memorable. 

Number of memories: too many to count...

I haven't even started telling you about the Macadamia nut farm we stayed on, or how the frogs sat in the roses at Swellendam, or the crocheted tree decorations in Oudtshoon, or our geocaching adventures, or the wonderful waterfall we found.......

We breathed in deeply, sank into the beauty of the land and refreshed our souls.

 .

  

A Sharp Decline

We have just been to Hel and back.  There is only one way in – a treacherous, seemingly never-ending, winding road with dangerous corners and ledges that are too close for comfort, and there is only one way out – returning up that self same dangerous route.

We journeyed there for a few reasons.  The scenery was, apparently, breathtakingly beautiful and the destination promised to be an oasis of tranquillity.  We were lured with images of complete sanctity, and of a challenge to travel a road fuelled by adrenalin.

The road to De Hel is only 37 km long.  There is a sign post at the start informing travellers that the route will take over 2 hours to complete. 37 km – that seemed doable.  The road is a rough stone path with a river or two to cross.  We lurched from side to side, inching forward for what seemed forever.  Just as we hopefully crested another pass, hoping to see the river bed, more mountain ranges and winding roads snatched all hope that the journey would ever end.  It did of course, after many false hopes and some despair.

The final pass, called Eland’s Pass, was the most harrowing (and breathtaking) of all.  Sheer cliff faces with hairpin bends made for a rapid descent and a sharp decline.  At this point we were grateful not to meet any other vehicles – someone would have to give way, and there was no place to go.

We stayed in the valley overnight at a Cape Nature cottage.  It was a further 10 kilometres into the reserve, but the end was in sight.  A handful of cottages have been restored sympathetically to their 1800s construction.  It is hard to believe anyone would choose to live there (a couple of families still do).

Cape Nature had left a few books in the living area of the cottage.  One was the visitors’ book, which warned guests about the danger of baboons invading the house if they smell food.  Another was a coffee table type book that explored the Karoo region.  The page about De Hel said something like:- If you have the time to go to De Hel, rather use that time more wisely and go somewhere else!!!

The trek out of the valley was less daunting.  We left behind the cries of the baboons, the arguments the other family staying near us had in loud voices, and the desolate environment.  We were familiar with the route and could look forward to a village stayover that evening in a more comfortable place.

The whole adventure is a metaphor for me.  The road into dark places is uncomfortable and dangerous.  There is no warm welcome at the bottom, and the only way out is to travel back along the same track, clinging on to familiar markers and hope of gentler place to stay when we emerge.

The best, of course, is to take the guide book’s advice and use the time more wisely by going somewhere else, but that is not always possible.  Use the hiking rules if you find yourself embarking on this journey – never ever travel alone, always tell a friend where you are going, keep three points of contact with the ground at all times, and take some warm clothing. 

Winding road down into De Hel valley

I am glad I have seen De Hel.  We can tick it off the bucket list.  It was not kind to glucose numbers (which may have been elevated to start with because of a zip line adventure at the Cango Caves earlier that day…..).But we took some photos of the stunningly beautiful nature and have lived to tell the tale.

In the next blog I will tell you all the wonderful things we did on this road trip.  I just had to get this out of my system first.......!

TD's Birthday Bash

TD turned 16 in the middle of March.  And how grown up she is! As we always do, we asked her to decide the theme for her party, and this year she chose (and which 16 year old wouldn't) PIRATES.  She felt she had missed out on this theme when she was 6, so 16 was a good time to catch up.

This presented a bit of a challenge. Sixteen year olds require a little more than the usual sweet treasure hunt in the back garden and cardboard swords and parrots and rainbow jelly.  All party planning starts with a good breakfast:  Andrew and I choose a cafe, take reams of paper and a couple of pencils and plot out possible party activities.  Ideas tend to start on the grand scale, and thoughts of building a garden size Pirate ship, of firing cannons with real gunpowder, and walking the plank all seemed like good ideas.

Google disagreed.  Apparently gun powder is dangerous and not recommended for home use.  Giant ships take a lot of wood and a long time to build. Walking the plank may not seem like fun to young pirates.  We needed a second breakfast.

Andrew building the ship late at night....

We raced up to party day, fitting in family commitments, hectic work schedules and all the party prep.  But by 6pm on Friday, all was set and the Jolly Roger flags were hoisted.  TD has delightful friends (and a large number of them.)  They all entered into the spirit of the Great Piratical Rumbustification (thanks Margaret Mahy for a fabulous children's book with that title) with great enthusiasm.  We did shoot cannon (tennis) balls at a 2D Pirate ship.  The cannons were spring loaded, so no novice pirates were harmed in the shooting of them.

The main activity for the evening was making treasure chests.  This required a fair amount of preparation and huge dollops of bravery on our part.  Twenty five teenagers wielding hammers, aiming at small nails, using superglue, grinding off sharp nail points proved to be a loud festive occasion - a true Birthday Bash.  The results were astounding.  The treasure chests looked great, but that is not what I am referring to.  The result was a group of 16 year olds co-operating with each other, chatting as they worked, engaged in the moment and being creative.  The astounding result was a celebration of TD with a symphony of hammering.

Andrew and I needed more hands on deck for this activity.  It takes really great friends to arrive on a Friday evening, who don't mind crouching on the dining room floor and a lot of noise. They helped the learner pirates with the basics of carpentry - like which way round a nail goes, and how to remove a wonky tack, with making sure everyone got the right pieces at the right time, and with serving the pudding and answering the queries when our hands are full.  Me Hearties Kathleen, Natalie and Paul ye be fine buccaneers - thank you!

The treasure chest I made may look empty at the moment, but really it is filled with happiness and unseen treasures of thankfulness that we could celebrate TDs 16th birthday.

And diabetes?  It was there, but just for the evening we told it to Walk the Plank.


PS I realise that some of you may be a bit disappointed that diabetes is not the main focus of all my posts.  There is a reason for that.  But if you are looking for more information and some excellent blogs, please have a look at https://blog.feedspot.com/diabetes_blogs/

The Rabbit under the bed

Arriving late to a funeral is bad form.  Our timing was all off on Sunday, and we were running spectacularly late for a lunch in celebration of Andrew’s Aunt’s life.  The family are the kindest, gentlest, most welcoming people in the world, and they were not bothered by our tardiness at all.

One of the reasons (but not the only…) we were behind schedule was because TD had a low.  She plummeted from 3.5 (which is already low) to a staggering (literally) 2.3.  The Super Cs didn’t touch it, so she had a Chocolate Gu (a brand name for flavoured glucose).  Barely able to walk, she staggered to the car and we set off.  The effects of a low can last a long time – much longer than it takes for the glucose number to rise.  She was feeling off well into the afternoon.

There was a lot of emotion flowing at the luncheon.  Aunt Hazel had died surrounded by her family, in a home she loved, with a bunny under the bed. (It’s a free range rabbit I was told, and often naps on the bed in the afternoon sunshine.)  Andrew’s cousins and some of the grandchildren spoke of this remarkable lady who set out to enjoy every minute of her 92 years.  It was a profoundly simple and honest celebration.

Death is a difficult topic to broach on the best of days, and yet it shapes so much of our lives, and how we see ourselves.  Time becomes consciously precious, a limited resource.  A gift if you like.   

To be brutally honest, one of the consequences of a person with diabetes going too low is Death.  It does not happen to many people, but it does happen.  How do you not frighten a teenager with this thought while still imploring them to look after themselves?  Yes – teenagers die of many things – accidents, abuse, illness, the proverbial bus…. Diabetes just adds one more liability to the list.  I have told TD it will not happen on my watch, and I am determined to keep that promise.  And she will play her part in looking after herself and asking for help when she needs it.  You see, when she is low, her behaviour can be erratic – a mixture of utter fatigue, shakiness and silliness.  And at night when she is low, she is asleep and looks just the same as when she is not low and asleep. 

I imagine any parent cannot bear the thought of anything awful happening to their child.  I know I can’t.  And while I can live my life and carry on with daily routines, diabetes lurks under the surface of our family, like a monster under a child’s bed.

The fear of monsters is the fear of the unknown and dangerous.  If we can acknowledge our fears, and drag them out into the open, maybe the monsters will turn into something softer and more comforting.  When TD and I needed a little space at the celebration lunch, we went to talk to the rabbit under the bed.  I think looking for the rabbit instead of the monster might just be a calmer way of living.

 And to Hazel : your legendary zest for life is an inspiration.

Adulting

Well, there went January.  All of a sudden the year has truly and properly started.  TD's annual school band camp has come and gone, and she handles these times away with growing confidence.  I am getting a bit better too, and once she and I had set out a plan (SMS her glucose number to us at 6.30am, 9pm and 1.30am...) I felt, if not completely confident, more reassured that the weekend would be ok.

The view from our stoep at Wellington

Andrew and I decamped nearby in Wellington and caught up with our reading, chatting, knitting and relaxing, spending long lazy hours near the pool or admiring the calm surrounding. It was just what we needed. Especially the chatting.

Energy is still in short supply here, and on Monday the T-shirt slogan that became popular a few years ago, suddenly made sense :  "I can't Adult today." When I first saw it, I had to ask the kids what it meant and they patiently explained that the youth of today are quite happy to use nouns as verbs. I find a lot of grammar usage strange these days.  But it all made sense on Monday :  I could do with a patch where I don't have to shoulder quite so many responsibilities, where I can doodle pictures, play in the garden, nap in the afternoon and have frank discussions with other children about bugs and whose cat has the louder purr.

TD's year has started with gusto - her extramurals keep her busy everyday.  She is taking the academic year with the seriousness that grade 10 demands, and she is handling it all with grace and wonky sugar levels.  There are so many factors that affect her glucose number - tiredness and stress being two of the major ones.  But this is life -warts and all, so everyday we try to balance the scales of insulin and glucose.  Some days we triumph more than others.

This week the new Gucci campaign was launched.  It is called the Future is Fluid, and it features youngsters from around the world who are hoping to create a more tolerant society, particularly around gender issues.  If you know who you are looking for, you may spot TD in the background.
Here is a link: https://www.youtube.com/watch?v=nFUvLNL7E8Q.   I am beyond proud of TD and her desire to be part of a better world.

So I thought I would like to offer my campaign for a better world too.  I have decided that on those days that I "can't Adult"  I am going to change the definition of what it means to be an adult.

Andrew getting into the swing of Adulting

Who says care-free doodling, playing, napping and frank discussions are only for children.  I know I will be able to handle the hard stuff a whole lot better if I spend more time doing the playful stuff.  Keen to join me? - I am happy to share the box of crayons with you, and while we are colouring in outside the lines we can chat about the serious business of being an adult.  Or bugs and cats if you prefer!

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.

Another trip around the sun

Today is the 24^th anniversary of one of the most joyful and momentous occasions in my life.  At 6.34am on a Sunday morning, I became a mother. My life changed forever.  The person we celebrate today is a Gentle Man – kind, compassionate, thoughtful and wise.  He is also gorgeous and exceedingly astute and determined. I admire him greatly and love him totally.

I also miss him, as he lives abroad at the moment.  We do speak when we can, but that isn’t quite the same as the casual comment type conversations of everyday living together.

He was an adorable baby, and we had so much fun learning how to play together, with him being the teacher to us adults of what is important in life and how to delight in every achievement.  Baby babble became precious words.  Words became concepts.  Concepts became theories.  Today he is a PhD Pure Maths student.  (Not that I am suggesting a linear progression of those things – I believe some concepts and theories happen before words.  Words are just a way of communicating them!)

This is a photo of him teaching Andrew the crucial art of play.  They both look quite different now, particularly with regards to hair styles 😊

He, being the elder child, was of course the prototype.  I look back now and think of all the things I would do differently. TD probably benefits from some of the lessons we learnt from the trial and error approach all parenting involves.  Parenting is a huge learning curve and children are the most patient teachers.  From dependency to independence, it is a journey of interweaving stories, past and present colliding, infinity becoming a possibility.  Becoming a parent felt to me like slotting the crucial piece into a jigsaw puzzle – the world suddenly made sense. 

It is not unusual for moms to think their offspring are the best in the world.  But the thing is – my two really are. 

What a journey this has been and continues to be.  Thank you, R and TD - as inadequate as those words are.  I love you both infinity plus one.

Happy birthday. 

14 November and ice cream

 Mr Banting’s birthday has become International Diabetes Day.  This is, I assume, because of his life saving, Nobel prize winning co-discovery of Insulin and its therapeutic effects (in 1922 in case you are wondering. ) There were online offers to sign a birthday card to the (dead) man in order to break a world record and acknowledge him as the Champion of diabetes, but this kind of showmanship is not my cup of tea.   I would rather raise my cup to  the heroes  who deal daily with the weight of the diabetic diagnosis.

So we didn’t acknowledge World Diabetes day in our household, although I was made aware of it through the forums and a friend who was hosting tea for moms with T1 children.  We did go out for ice cream after supper (a very healthy meal if I say so myself….) in order to Celebrate Life.  Food can be a scary issue with a person with diabetes.  I was thinking yesterday, as I reached for a handful of peanuts and yet another cup of tea, that I can just eat when I feel peckish without wondering what it will do to my glucose levels or if  I need an injection.  It is a freedom I usually take for granted, as most people do.  But really it is a luxury.

It was also  Great Aunt Edna’s birthday yesterday, so we clinked ice cream cones and wished her health and happiness. TD and I chose Strawberry birthday Cake as one of  our flavours in honour of her special day.

While we are in the birthday mood, it was also Prince Charles’ birthday.  It was tempting to go back for seconds to wish his health too, but then I remembered some one else I know who has the same birthday. They would need toasting too! Luckily we decided moderation would be more sensible.  Ice cream eating is an insulin heavy activity, and anyway, more than one helping is difficult to stomach.  There can sometimes be too much of a good thing.

Happy birthday to all the 14 November people.  And Celebrate Life to all the rest of us.

Reflections in Glass

Sometimes I get itchy fingers (like itchy feet but with less expensive consequences!)  I need to make or create or do something tactile.  Sometimes it is because life can get a bit routine – work, cooking, cleaning, driving, mowing the lawn –all good in their own way, can seem a bit mundane at times.

We have a Wendy House in the garden – home to cutters, rakes, brooms, garden chairs – that sort of thing.  It is as old as our title deed and rather weathered.  Quaintly, a stubborn rose plant is growing up a side, through the house and poking some branches out the front. (No rose flowers in all the twenty years, but such determination I can’t cut away.  Besides it looks rustic.)  Parts of the shed are actually rotten – the wood needs replacing. And don’t look too carefully if you don’t want to see the little beetle holes.  It is a ramshackle shed.

A few years ago we screwed the windows shut after I found someone in the garden trying to get into the Wendy House.  What he wanted I will never know, because we both startled each other and he ran off.  So the windows no longer open, and the door is symbolically rotten.

What better place to put a stained glass window.

I love cutting glass and playing with the way light falls, reflects and gets absorbed by colours. So, that is my latest project and it gives me a lot of satisfaction.

And of course, time to think.  Sometimes those of us who feel that we are more than the sum of the functions we do, need a little sparkle added to our lives.  I am very conscious of the many comparisons that I can make between my Wendy House and my Wendy Self, what with some rotten bits, quaintly ramshackle and don’t even get me started on the whole intruder- in- the- garden- and- window scenario!  So spending some time on adding a completely unnecessary but creatively fun window into the Wendy Shed/Soul turned out to be not so unnecessary after all.  I needed to add a personal touch to a neglected space.

Parenting is hard work.  We all have challenges to face . Sometimes the challenges are  immediate or more intense than at other times.  Sometimes it is the long term just coping with everything that is thrown at us that seeps away the energy.  I love being a parent.  I love the creativity, problem solving, all consuming attention it requires.  I even love the difficult bits, the sleepness nights, the routine of it.  Because all of it, like the pieces of glass in a stained glass window, create a whole picture from fractured bits and pieces.  I added a few mirror pieces in the window too, just to remind myself to put some self reflection in the mix. 

The window has turned my ramshackle shed into an Eclectic Garden Storage Unit.  Nah not really. It is just my Wendy House.

Now serving number P326 at Counter 5.....

I am lucky in that I get lots of time for reflection, people-watching and day- dreaming.  All in queues.  I am a regular at the local pharmacy, as I have to pick up TD’s monthly supplies of insulin, needles, testing strips and allergy medication.  There are usually several other trips during the month to cater for the normal household medical needs and aches and pains. 

 

Government Prescribed Minimum Benefits (PMBs) means that our medical aid is co-erced into paying for TD’s two types of insulin, the glucose testing strips and needles. Strangely, they won’t pay for the Glucagen Hypokit for unconscious lows or ketone strips to test excessive highs, despite the fact that these could prevent hospitalization of TD, which would have a far greater cost to them than the preventative medications and tests.  But who am I to fathom the logic of the corporate insurance giants.

They pay for 200 testing strips a month.  That is usually sufficient, except at times like the past six weeks when the roller coaster of mostly highs has meant TD has needed to test many more times a day, and so she ran out before the refill date.

Medical Aid allows me to pick up stock 4 days before a full calendar month.  So I have learnt how to time my visits to maximise the benefits, I have learnt how to deal with repeat scripts, how long a script is valid, when re-authorisation is likely so that I don’t get caught out and the medicine can’t be issued.  That sort of thing.  I have also learnt to take a small cooler bag with an ice block for the insulins, to keep the cold chain intact.

But mostly I have learnt to be patient.  I go with the thought that everyone – pharmacists, medical aid reps, doctors, moms(!) are all doing their best .  Sometimes there are glitches in the system – medication is not available or they only have partial stock; the system won’t issue without the latest Hb1c confirmation; the pharmacy is having a slow day.  It used to make my heart sink.

So I decided to use the time as my “medicine”, to practise meaningful breathing (try it – deeply and consciously breathing has got me through more than one unhappy day!).  I suppose it is no co-incidence that someone needing medical attention is called a patient.  If Time is a great healer, the pharmacy is nothing short of a miracle centre.

It must be a tough gig dealing with sick people all day, because most of us are not at our social best when feeling under the weather.  So, although I can’t say I look forward to long waits at the pharmacy, I can take a philosophical view, and be grateful that there are life saving drugs and knowledgeable medical people available to help TD and keep her alive.  Sitting in a queue is

really a very small price to pay.

Wearing my heart on my sleeve

My heart is a fragile place at the moment, - it has been a bumpy week. Yesterday we dropped our son at the airport, waving him off to start the next chapter in his adventures. Saying goodbye to him at the airport is not uncommon – he has travelled a lot in the last ten years, and with such regularity that we joke that we have our own reserved parking bay at the parking garage. But yesterday’s goodbye seemed different. Perhaps it is because I am feeling a little vulnerable at the moment; perhaps because his stay at home was much needed family time; perhaps it’s because goodbyes have been especially difficult this year. He was sensitive enough to pick up on my reaction and apologised if his departure was going to blow the tissue budget for the month, and reassured us he will keep in touch and be back for a visit soon.

TD’s week has been bumpy too. On Tuesday her glucose numbers were dangerously high.  Her Whatsapps messages sounded as though she was distressed. Quite rightly too – Glucose numbers above 20 are scary. I gave her the usual advice (inject extra insulin and drink water, and test regularly.) It didn’t work. Instead of lowering the glucose number she went up. We checked with the endocrinologist that we were on the right track –she confirmed we were, and if the stubborn high didn’t go down and if TD had ketones in her blood, she would need to be hospitalised. I didn’t relay the second part of the message to TD, but she sussed out the situation accurately. Her next reading was still high, and I decided to fetch her from school. Her text  message read “Please don’t take me to hospital.” Followed by: “Promise.”

This was not a promise I could make – and I was heartsore to know that sometimes, as parents, we have to do the unwanted or unpopular to keep our children safe. TD has an immense fear of  hospitals, and as our last experience there was less than optimal, it is not a particularly welcome thought for me either. But the truth is, that if the glucose in the blood is too high, TD would need to be put on a drip.

At home, TD pumped more and more insulin into her system drank litres and litres of water and we watched a movie to relax. Ketones were 0.1 so we could breathe easier. It worked. She  was still high, but below 15, so not only did we avoid the hospital scenario, but she was also able to go back to school to see the student plays production. This was very important to her.

The rest of the week was a rollercoaster ride of glucose numbers.  She soared back to above the twenties and dipped into the low fours.  I am aware, again, how much she deals with on a daily basis, and how maturely she deals with it all.  We changed insulin vials, and eventually changed insulin type.    The schools are on a short break, and I am hoping this will give her body - and my heart - a chance to catch up and settle down to our usual patterns.  Deep breaths, sleep and lots of tea should do the trick!

But it is only September....

2017's attempt

 

2016's look

For the past few years, I have approached November with a bit of a sigh.  Andrew has taken on the challenge of Movember – growing a moustache to raise awareness and fundraising for prostate cancer.  The hairy upper lip is not my favourite look on him to be honest, and he hams it up by choosing outrageous styles which he cultivates with great care.  I count the 30 days and tolerate this hirsute project.  But this year, I will not sigh, because this year it is personal.

Andrew was diagnosed with prostate cancer in March.  It has thrown us all a bit, not least him.  I can write about it now, because in July he had surgery to remove the prostate and on Monday we got the good news that he is probably clear.  Sometimes, whilst enduring something awful, I find it easier just to shut up and bottle it all in.  When the crisis is looking less threatening I can articulate how it was – that is just the way I am.  The surgery went well – Andrew’s doctor is one of the few trained and skilled in robotic surgery for the prostatectomy.  So instead of a very long scar down his abdomen, he has five smaller wounds.  He was booked off work for four weeks and – for someone who uses every second of every day –  I was a little surprised and grateful that he slept for most of it. 

It is hard to describe what it feels like to watch a partner fall ill with a dread disease.  Lots of things spring to mind: Like all the dreams and unfulfilled projects that we really should have given more time to: Like what is really important in life and how important balance is;  Like are we practically equipped to deal with illness.

We had a policy – we would tackle whatever was thrown at us together.  So I go with to all the doctor’s and physiotherapist’s appointments, make notes and talk about all the possibilities with him.

There has been a lot of sadness this year, and a lot to cope with. 

This November I will embrace the month of the moustache with much more enthusiasm.  Andrew has been very good about spreading the word to all people who will listen – Men- get your annual PSA level checked.  Take your health seriously.  There is nothing embarrassing about body parts and functions.  Talk about things.

I am very grateful for the skill of the medical community in Cape Town.  Andrew’s next check up is in 6 weeks.  We are hoping the good news continues and we can breathe a little easier.  Both this cancer scare and TD’s diabetes have made me realize we shouldn’t take health for granted.  

Carpe diem, and all that…..