For the geraniums....

The tree had to go.  Our beautiful, climbable, hammock-swinging tree had grown too large for our plot, and the roots were threatening to cause even more cracks in the house.  It was a sad, but not difficult, decision as we simply could not live with a beautiful tree but no home.  A few Saturdays ago, with the help of a wandering band of tree-fellers, we cut the tree down, and then cut it up.

Sunlight flooded into our lounge , and immediately lifted our spirits (and showed the dirt on the carpet). There is usually a bright side to even a sad decision, if we care to look for it.

In my head I envisioned a change in the garden lay-out.  Grass is SO before-drought these days, so we dug it up.  We have decided to make little gardens instead of one big patch of lawn, and to create a number of flower beds using the tree logs to border garden or wood chip paths.  It is hard work, digging, axing roots, laying paths, planting geraniums, planning where the tea mug stumps go.  In my mind I can see the future garden, but at the moment you will have to graciously use your imagination when you come to visit.

Changes require a certain amount of bravery - we can get (too) comfortable with things that are familiar, and change can show things in a different light. It is also a realization that things could work better. (The engineer husband always says "If it's not broke, don't fix it") I felt, and I think TD did too, that we needed to make some changes in her diabetes management.  The last few months have been difficult, glucose numbers wise.  We had, I think, built solid foundations for diabetes management over the past few years, but some encroaching issues were causing cracks.  Safe guarding TD's health is not as simple as uprooting a tree however -Oh I wish it were - so we needed to see where things are not working optimally and how we can redesign a system that helps create a calmer glucose experience for TD.

On my request, we have gone back to writing a food diary.  It helps.  Somehow recording the day's insulin shots and food intake along with any notable activities makes the process of glucose control more mindful.  TD has increased the basal (long acting) insulin dose - only by one unit, but that is how finicky glucose control is.  Her bolus (short acting) insulin at breakfast is taken 18 minutes before she eats.  Not 10, not 20 - 18 seems to be best.  You can see how much attention to detail your body wants you to take.

This all helps, but still does not eliminate the waves of highs and lows that TD surfs daily.  Some of her lows have been extreme lately.  Did you know that hot water can cause someone with diabetes to go low?  (The blood vessels dilate from the heat and cause insulin to be more rapidly absorbed than usual.) So taking insulin just before a lovely bath or hot shower can cause a hypoglycemic event.  Last weekend TD generously offered to have a rare and sacred bath, as the geraniums were looking a bit droopy and needed watering (we recycle of course!) She went low, and called me in to help.  As I wrapped a towel around her, fed her glucose and waited until it was possible to lift her out the bath, we both wished for a magic wand that would make this horrible disease go away. 

But in the absence of magic, we will look for shafts of sunlight, and embrace helpful changes.  Things may look a bit wild and unkempt at the moment, but just wait until next year when the fruits/flower of our labour will create a beautiful environment.  Well, That's the hope, anyway.  And if not - we can try again.

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.

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.

Happy birthday TD!

TD had a good day yesterday.  She was beaming and bubbly and full of what I call TDness, or essence of TD!  It was her birthday, and her school friends had decorated her satchel with streamers and ribbons.  Some had hand drawn beautiful cards.  Others had written the kindest messages.  She felt celebrated and loved.

Her TDness rubs off on others too.  On occasions, complete strangers have stopped us in shopping centres, to comment on her happiness and joy.  Her grade 11 sports coach told her that she had “a big smile, lots of friends and diabetes” after her last training session yesterday.  (Her school has a collective sense of humour which helps make it the fine institution it is.)

She is now 15 – well ensconced in her teenage years.  She is a giddy mixture of old world wisdom, youthful optimism and age appropriate cynicism.  She does come unstuck at times.  Sometimes she is just too tired to give the world her TDness, and she needs time to gather her thoughts and rest. Like all of us.  She was so tired on Monday evening that, by mistake, she injected the wrong insulin at bedtime.  Luckily she noticed that she was injecting Apidra (quick acting insulin used to balance the carb ratio at meal times) instead of Lantus ( the basal injection which runs in the background with a slow steady stream of insulin).  This is the first mixup in three years, but it is a scary one.  If she had not noticed, and gone to sleep, she would have gone way too low and…. I don’t even want to think what may have happened.  It was easy to remedy in this case – a glass of sugary drink and a slice of wholewheat bread (quick and slow release carbs respectively) and a blood test every couple of hours or so, and all was well.

We celebrated her birthday at her choice of restaurant last evening, and wandered around the Waterfront, reminding ourselves how beautiful Cape Town is, and how lucky we are to live here.  As usual we missed our son and thought of him while we were celebrating.  He sent her the biggest bunch of beautiful flowers.(Pictured)

Time marches on.  Fifteen years ago TD was new to the family, a delightful bundle of gurgles and perfection.  Nothing much has changed – she is still that delightful - but bigger-

bundle of gurgles and perfection and I am so grateful to have the chance to mother both my children. I acknowledge them as the greatest life teachers anyone could hope for.

(I know "perfection" seems like a heavy label and responsibility.  I don't expect perfection from my children. It's not about what they do - rather about who they are.  They are perfect at being themselves.)

Happy birthday, TD.  Wishing you all the happiness you give to others reflected straight back at you. Put on those new sunglasses – that reflection will be quite dazzling.

Ramblings after the storm

It is too hot for restful sleep some nights.  February is our hottest month, and with temperatures soaring up in the late 30s, the heat can be energy sapping.  There is a stillness in the air, and I long for rain. We Capetonians are in the midst of our worst drought ever recorded. We use no more than 50 litres of water a day each, and try to use less.  The fear of turning on a tap and finding no running water is real and constant.  So there are no long, cool showers, no cooling off under a garden sprinkler, no peaceful watering of gardens.  And there are definitely no baths.

TD and I both miss our baths.  For me, a bath is a bit of an occasion - my happy place where I allow my thoughts to wander while I soak out any tension in tired muscles.  Sometimes I read, other times I just enjoyed the liquid cocooning.  Either way, I come out of a bath rejuvenated and relaxed.

There have been all sorts of stresses in our environment lately  - not just the water crisis.  I grew up in a country that emphasized that the political is personal.  Everything that happens in government of a country affects each citizen.  There is no place to hide, no reason not to feel everything personally.

This past Tuesday there was a thunderstorm in Cape Town.  Bellowing, angry sounding thunder was followed by eye opening, sky illuminating lightning, and most wonderfully of all, rain.  It was the perfect setting for the political storm that was raging simultaneously.  We have been in a drought of good governance, and the country's resources and patience were as dry as our dams.  On Tuesday the President was blustering and angry, defiant with eye opening flashes of self pity and lack of insight.  We were waiting for him to resign, and then mercifully, like the rain breaking the drought, the next day he finally gave over power and the country could breathe again.  The future suddenly looks greener.  Renewal - of the land, the ground, the gardens and the government all seem possible.  There is hope.

Of course, the opposite is also true.  Not only is the political personal, but the personal is also political.  The way we conduct our lives is governed by the politics of where we live, the historical advantages or disadvantages, the current tolerance levels and availability and affordability of resources.

Diabetes (or HIV, or cancer or any other other challenge) is political too.  In 2006, the government issued a list of PMBs (Prescribed Minimum Benefits) which coerces medical aids to cover the costs of care and medication for the 250 listed medical conditions and 25 chronic illnesses.  So for families like us, who have a medical aid scheme that only covers hospitalization, it means that TD's diabetic care, her insulin and testing strips have to be paid for by the medical aid, regardless of the fact that we do not have full cover.  I am aware how fortunate we are to have that help, that we don't carry that burden that others do of how to afford treatment.

It had been a politically stressful week for our country.  The good part of most crises is that it brings people together. Collectively Capetonians are working to postpone Day Zero (when there is no more municipal water available) by using less and reusing every drop.  Collectively South Africans urged for change in leadership by having a political voice.  Imagine the power that could be unleashed if the world collectively used resources for medical research and kindness rather than consumerism and defence.

We are ever hopeful for a better future.  I am hoping for a wet wet winter.  I am longing for a deep soaking bath.  But if that is not to be, I could settle for world peace.

A photo that Andrew took of the gathering storm clouds on Tuesday.