Whose Diabetes Is This, Anyway?

The chronic disease tsunami is coming. The diabetes edpidemic is here. Government and health organisations all seem to be running around trying to improve chronic disease care. A lot of work is going into developing health systems and pathways and programs for people with chronic disease. Integration, prevention, health reform, hospital reform, the health sector is full of change and movement focused on chronic disease.

But I have a chronic disease, quite a serious one, and so far this year I have spent not one second receiving services of any kind from 'the health system'. My insulin is generously subsidised, thank you PBS, and my pharmacist takes my contribution of money with a smile. Pump supplies ditto. But otherwise it's me and my diabetes.

Last year, my eye doctor sent me a letter to say I was due for a check up - I almost fell over. You mean someone, somewhere out there is keeping a track of all the million things I need to do to keep on top of my diabetes? Well, one of those million things at least. How fabulous. The rest however is left to me to remember and juggle and arrange and coordinate and remember and do.

At my last endo appointment last year, I left her room and the receptionist had gone home. So I couldn't make another appointment. They sent me the bill. But noone has called to see if I need another appointment. I haven't called either, it's on the list, but keeps dropping down and off. I wonder if anyone will notice?

I have sore knees. It came about since I started doing my beloved yoga. (As I signed my name off at my second ever yoga class, the teacher asked me 'so how are your energy levels?' I looked blankly and thought she was completely mad and began plotting my escape but then each week I started feeling this spring in my step the day after each class, energy I suppose. But I digress...) Actually, I have a range of niggly health stuff. A skin thing that won't clear up, for mmm years now, contraception pills/plan that needs a revisit, overdue for a dentist check up and probably overdue for a pap smear too now I think about it. I read recently that women with diabetes are less likely to be up-to-date with their breast cancer screening - please tell me they didn't form a committee to work out why.

Last time I went to my (lovely, thorough, kind, respectful) GP, there was a more urgent issue which had taken me there. I did have that list of other niggles in my handbag but once I saw the waiting room (new mum stressed her baby wasnt breathing right, Sudanese refugee with 4 kids in tow) I decided to leave my list for another time.

If I was to draw up my own diabetes pathway, the things in my life that currently contribute to my health - after insulin, my pump and its supplies - would include yoga classes, my weekly fruit & vegie box delivery, my cat's purr and my husband's ear. (And my genes which which despite giving me Type 1 diabetes have also protected me from any serious complications, touch wood.)

Postcards from Europe

Two pairs of itchy feet appeared, the planning all came together, many lists ticked and crossed, and my husband and I were off to Germany for Christmas. Yippee! Here's a few postcard moments with a Type 1 D flavour.

The Food!
Northern Italy is a food lovers' dream. And my gorgeous friends who we stayed with are foodies (even by Italian standards) so we ate and drank the New Year in quite spectacularly. A huge snow dump on New Year's Eve in the little town of Erbezzo was spectacular, Venice in winter without the crowds was magical, Verona's ancient Arena (pictured right) mystical and romantic - but it is all about the food. And in this part of the world, food is all about carbohydrate in its many glorious forms.

Three local specialities of Verona, all incredibly delicious, held dear to everyone's hearts and able to be praised and discussed for a lifetime, are pandoro, recioto and peara'.

Pandoro you can encounter in Australia, the dryish, yellowy cake that comes in a box. Panettone is a variation with fruit through it but pandoro is the plain cake dusted with icing sugar, and all of it comes from Verona. It is given as a gift around Christmas so every household will be stocked aplenty and they eat it for breakfast and dessert (after any main meal, lunch and dinner if you like), as a snack, as you please. It is sweet. But let me tell you there cannot possibly be less than 90% sugar in this stuff given the off the charts sugars I had after breakfast our first day in Verona. I did bolus for it, I guestimated but learnt fast that I was waaaaay under. I don't remember going quite so high, so fast, for a long time. Pandoro is delicious, and to be considered a true lover of northern Italy one must love it (and have a favourite variety to which you are as committed as you are to your football team), but it tainted a whole day of my travels, which had to be spent coaxing that blood sugar back down, too far down, then up again.

Pandoro has been reluctantly added to 'The Coke List'- a select few items that I have decided are just not worth it. It was a sad day. I did however manage to protect my honourary Veronese citizenship by continuing to profess adoration of Paluani's red box pandoro whilst feigning post-Christmas weight loss obsession like every good Italian woman was doing that week as I declined.

Recioto is sweet, red, slightly sparkling wine served cold - direct from the window sill in a Venetian winter - after a meal. Delicious but when you take away the good bits it's really like drinking straight cordial. Through the roof again.

Finally, peara' - the magical mystery from Verona (happy snap at right). My host had recently been crowned the queen of peara' by her friends and as she prepared it for us she lovingly shared with me the recipe learnt from her mother. There were bread crumbs and chicken stock, lots of both, then pepper and a little bone marrow. Did I mention there were a lot of breadcrumbs? It is ugly but delicious: creamy, peppery, soul warming goodness. It is served as a sauce for 'bollito misto' - a selection of boiled meats, more sauce than meat, by a long way - then some more bread to wipe the plate clean of the precious sauce. And it is eaten through long, winding meals. More meat appears and is shared around eagerly until every last drop of peara' is wiped from the bubbling pot.

This is four hours of grazing through loaves of creamy bread. When do you bolus? And how much of that mound just served onto my plate by my passionate host (I am the guest, I must eat, and be served) is peara' in amongst the meat? Is that a piece of chicken or a mound of breadcrumbs? Would it be one icecream scoop worth or 5 in there? And now I must just eat, whilst a dozen Veronese watch and await my response to their treasured local dish. Mmmmmm...... I eat and I guestimate and I'm through the roof again. Before pandoro and recioto are served for dessert.

The Chilly Hypos
Wandering the streets of another frozen town, Mantova today, the wind whipping across the ancient piazza brought tears to my eyes - it cut through my heaviest pair of pants, the tights underneath and straight into my bones. It was cold. Even the locals said so. And I was shaking. An old familiar shaking unlike all these other things the cold was doing to my body that this Aussie girl felt very foreign. I was getting low. As I dug around in my bag for lollies that automatic audit ran through my head to ask why I was hypoing this time - food, exercise, period, none of the usual suspects seemed to jump out to explain.

Later that day, during the tour of the local castle, my mind wandered a little. I suppose the body burns energy like exercising to keep us warm when it's really cold? The hot weather hypo is well known to Aussies - is there a northern hemisphere version left out of the Aussie text books? Was this the reason I was having a few surprise hypos? Or is a casual meander through a pretty town still more exercise than I would normally do on a Tuesday morning checking emails at work?

Continuous monitor making friends and enemies
I was wearing a sensor for continuous monitoring a few days before I was due to fly out. I recalled some official guidelines somewhere which say not to use it on a plane and I tossed it up for a bit. In the frantic preparations (I literally ran out the door into the taxi!) I found myself in customs still hooked up and monitoring - so I was taking the sesnsor on the trip! As the guy across from me urgently Blackberry'd his way through to takeoff and the plane didn't explode, I left the tiny device on my hip to do its work.

It was a dream. (And we didn't crash.) I basically flatlined my sugars through the long trip: two flights- 13 hours, 9 hours, a 3-hour train and a bus and lots of waiting in between - almost two days' travelling. I could check my blood sugar at any moment, and in just a second, by pressing one button on my pump. We're young and fit and healthy but the long haul flights are still demanding. And a mile high is no place for crazy blood sugars. The sensor was a good friend.

The sensor lasted for a few days more but made itself an enemy in Germany. I rollercoastered my way through Christmas and thanks to the sensor was informed of my every blood glucose excursion with a piercing alarm. After a few glasses of red I can sleep like a dream so it was more often my husband who woke with a start to the ee-o-ee-o of my pump. If the alarm had been warning of impending disaster (as it sounds like if you don't hear the more polite earlier version, and are woken from a deep slumber) all would be fine - in fact delighted at the warning and opportunity to prevent an overnight hypo. However, the same series of alarms warn not only of falling sugars but slightly rising sugars, low battery, lost sensor and my favourite 'the signal is low so there is a chance we may lose connection between the sensor and the pump and not be able to give you results from the sensor for a few minutes'.

It is nice that the sensor is so concerned about its optimum functioning that it will call for assistance to ensure it is working completely effectively at all times - but I am on holiday and I want to sleep!!!!! I should explain that I was wearing this device last year when I had a major seizure hypo with the ambulance called. First major drama like that since I was a stupid first year Uni student 12 years earlier. The alarms on the sensor didn't go off that night. I still think continuous monitoring is fantastic but am realistic about what it can do. I don't rely on it and expect it to stop every hypo, so if I happen to roll over in a way that the sensor can't transmit 100% effectively to the pump for an hour while I sleep, I would rather be left to sleep than woken in a panic. It needs a chill out option to turn off the 'nice to know, not need to know' alarms. Especially while I'm on holiday.

Hypo Heaven
A couple of brilliant dyas in Hong Kong on the way home. A twenty minute ferry from Hong Kong Island had us amongst a thinner shade of smog on Kamma island for an hour's walk to where the guide book promised us seafood delicacies were aplenty. So after 5 weeks of unpredictable types of exercise traipsing around cities and eating at times and places unknown, this was planned, scheduled exercise. Easy, drop the basal rate, test before, yada yada you know the drill ..... the (tiny) diabetes part of me was kind of excited at the simplicity of it all.

Just 3 minutes into the walk, 15 minutes after a perfectly respectable BG result on the ferry, I am having a near out of body experience - echoey sounds in my ears, a mind skipping around all over the place, a concerted effort to put one foot in front of the other. I stop and test: 1.8. Where the ... did that come from?

And where the ... did THAT come from? In front of us at this very moment is a beach, with real sand, dappled sunshine, kids playing - and beside us on the path are vending machines selling ice cold sweet drinks. This is hypo heaven!

Thinking about Babies

Last year I got married. Last month was our first anniversary. We got the memo. Next comes babies, and picket fences, and mortgages.

We’re thinking about children. Not in the – ‘maybe we’ll have children sometime soon’ sense of thinking. But it feels like a top secret and intensive military exercise.

I have been advised, many times, that pregnancy for women with Type 1 Diabetes is very high risk, for both mother and baby. To minimise the risks, I need to get my blood glucose levels and other health basically equivalent to as if I had never had diabetes.

The blood glucose level targets that my endocrinologist has given me are levels that I have never come close to achieving in 25 years. I expect I will have to make some significant lifestyle changes, maybe cutting back to working part-time and cutting back all sorts of other things, to focus the necessary energies on achieving this level of health.

So I am thinking about having children.

I'm thinking that my career will likely stall before I even attempt to conceive. Given my medical history, achieving these non-diabetic blood glucose levels is more than likely to cause major hypos, serious low blood sugar episodes, with seizures where the ambulance is called to revive me. My doctor has highlighted that this is a significant risk. I wouldn’t be surprised if this occurs 3 or 4 times before I get the all clear to start trying for a baby.

I'm thinking that after 12 months of part-time work and focusing intensely on my diabetes control, it’s most likely I won’t meet the ideal targets my specialists have set, but I’ll get somewhat close, we will weigh up the risk to me and the possible baby, and possibly proceed.

Then we would be up to trying to conceive – the fun bit! But what if it takes 2 years , like it has for many of our friends? I continue working part-time to focus on my diabetes, passing up or being overlooked for job opportunities, as well as the regular major hypos with seizures and getting to know the local ambulance.

If I eventually fall pregnant, having not achieved the gold standard in diabetes control, we are gambling with significantly increased risks of still birth, macrosomia (large babies), pre-eclampsia and (most terrifiying of all) congenital malformations of the child causing it to have spina bifida or other devastating problems.

During the pregnancy, the early stage diabetic eye disease I have might not respond well to the pressure the pregnancy puts on the body. Like my friend Leni, will blood appear in my eyes as blood vessels at the back of my eye burst and threaten my vision, and pregnancy check-ups become interspersed with my eye doctor burning painful lasers into the back of my eye every week to try to stop the bleeding? Will the eye disease threaten my sight so I wake in the middle of the night in panic that I’ll never be able to see my baby?

So, that’s thinking about having a baby when you have Type 1 Diabetes. I'm still thinking.

And my gorgeous husband is gaining a cult following as 'the baby whisperer' by putting our friends' children to sleep at music festivals.


P.S. See Can I Have a Healthy Baby? for advice and information and pregnancy with diabetes, and Vanessa's brilliant blog about her experiences, The Sweetest Thing.

What if I never ... ?

What would life have been like if my immune system had not turned on my pancreas in 1983? I have been thinking about this a lot this week. Births, death and marriages all around, plus a 25th anniversary of D this year all making me ponder.

Would I have been disinterested and ignorant about health? Or would I have followed my family pedigree to the green lawns of Wimbledon?

Having some chapters of the medical textbooks infiltrate my brain since youth has proven most useful in my job which I love. An interest in health even helped me choose between the way-too-many career options before me as an overwhelmed teenager, saving my sanity and leading me to an exciting and fulfilling career. Even meeting my lovely husband could be credited to this diabetes-induced choice, at a stretch.

Sport and all of that never embraced me. I was "the musical one". Going shaky and faint every second time I ran anywhere probably didn't enthuse me to run faster and further. I know some kids with diabetes were discouraged from sport; that definitely wasn't the case for me but it wasn't easy with rudimentary and unreliable diabetes treatments, and I never got beyond the strawberries and cream at Wimbledon; thankfully some cousins who followed had more success. I have noticed over the years that many of the champion sports stars with diabetes were diagnosed mid career: Gary Hall Jnr, Dale Weightman, Steve Renouf, not lived a whole life with it. The violin was a lot easier, and exercise remains a major challenge full of guilt.

I was a pretty cautious kid. Totally missed the drugs thing, went looking for it a bit late. Some pretty major social embarassments thanks to diabetes malfunctions in my early teens were enough to put me off making it any more difficult to keep my cool in front of my boyfriend's friends. As friends these days reminisce on their teenage exploits I occasionally wish I'd had more fun - but I'm sure all the stories are exaggerated anyway.

There's a certain grit and determination, an odd sense of humour, an invaluable capacity to problem solve myself out of just about anything and anywhere. Helpful traits given to me by diabetes, or there already and saving my life given diabetes joined me too, or both? Certainly there are people from all walks of life that I would have never met but with whom I share a special malfunctioning connection, and who have enriched and widened my life in many wonderful ways.

I'm sure life would have been different without diabetes. But better? Who knows?

Vacuuming

I can't believe what I found doing the vacuuming today....



A half full box of insulin pump infusion sets - the cause of my recent misery and frustration. Perhaps I'll leave them there as the emergency stash for next time!

Pump Exile

I dragged myself out of bed and hesitated to collect up my pump dragging behind, then remembered it wasn't there. One less thing to worry about as I stumbled through to the kitchen in the dark, hunting for the jelly bean jar. But would I have been doing this if my pump had been there? Blood sugar had been good an hour before, off to bed and just getting to sleep as the heart starts pounding and brain slowly kicks in that sleep is not on the cards just yet.

A few weeks of illness and deadlines had seen the unpaid bills mount up and diabetes supplies whittled away, with re-ordering forgotten. All to be discovered as I pack for a weekend away, of course. My diabetes educator came to the rescue; we made a detour past the hospital on the way to Daylesford and picked up some more supplies. Unpacked and unwinding with the open fire blazing, I went to change my site and shattered the peace as I discovered the pump lines from the hospital didnt fit my pump. Lucky I had packed the pre-filled insulin pens my endo gave me, but what to do with them after seven, happily uninterrupted, years of pumping??

Injections. Some dodgy calculations and I have some doses. This is a novelty, for five seconds. The first day I ran high with the guestimate doses a bit conservative. By day 2 I was getting the hang of it. And remembering why injections are such a rudimentary, difficult way to manage the most complex self-managed medical condition in the books (quote unquote, my endo).

On a pump, deciding between 8 and 10 units for a meal bolus is a real decision, with real impacts. With needles, it is a joke. A dribble of 2 or more units is clearly left on the needle at one shot, leaks out of the hole after the next, or is lost to an air bubble - in public, out for lunch at one of those funky communal tables, it's one thing to pull up the shirt and sneak a needle under the table, it's another to wave the needle around to shoot out a few units before injecting.

The smell of insulin is a random observation, something I had forgotten about, a smell that mostly lives at home once a week for the site change but with needles seems to waft constantly.

Eating becomes a chore. A weekend away grazing through a lazy Sunday loses its shine when every mouthful calls for a needle. I remember all the forgotten, missed, delayed injections through my teens and on when life didn't stop for diabetes.

Diabetes Australia had no response to my increasingly frantic pleas for help to get some pump supplies pronto but a comment on Reality Check website has me flooded with offers of help from my network of friends with D. I am reunited with my pump a few hours later. Back to the twenty-first century, to a device that any modern girl with D deserves to carry on her hip.