Thursday, January 31, 2013

Things That Make Me Smile No. 14: Seeing a Koala in the Wild

Last night I re-read some of the posts filed under "Things That Make Me Smile" They brought back some lovely memories and made me smile all over again so to lighten the mood between posts about diabetes I thought I would resurrect this charming series. 

And so here is Things To Make Me Smile number 15: seeing a real live koala in the wild. 

What do koalas (wild ones) and buses have in common? Read on and ye shall learn. 

Back in November I went on a much deserved long-awaited girls weekend to Noosa. On our last morning we went for a walk in the national park and spotted this fella in the trees next to the car park. I tell you, the wait for that girls weekend was nothing compared to how long I'd waited to see this koala. 9 1/2 years! Every time I've visited Noosa National Park in that time I have scoured the tree tops looking for koalas. My parents came over and saw one on their first visit. And the same seemed to happen to all my friends - unless they visited the park with me. Map Man and the In-Laws went for a walk one day and came back full of koala tales. I couldn't understand it. But finally it happened. I was so excited. So obviously I ran back to the car to grab my camera.  Tricky things to photograph but eventually I got it in focus. 

6 weeks later I had a friend visiting from the UK, so obviously I took her to Noosa as it is in the rules that all visitors to the Sunshine Coast must see Australia Zoo, Eumundi markets, and Noosa or they're not allowed to leave. Not that I wanted her to leave but we were terrifyingly close to running out of Tetley tea bags and I was worried about the possible fall-out. So we had a nice walk, read our books, ate our lunch and took a dip in tea tree bay. And just as we got back to the car, there he was again! Seriously! Twice in 6 weeks! I was slightly less excited this time and couldn't be bothered to grab my camera - actually I don't think I even had it in the car. But it did make me smile to think that my lovely friend got to see a koala on her first trip to Noosa despite being with me. Hurrah! The curse is broken. (I'm a bit worried that there's no incentive for her to come back, especially as we also photographed our cheeky backyard kookaburras - but then, she didn't see any whales so I think we're good.)

So now you know what koalas and buses have in common. Wait 9 years just to see one and you still have to wait 6 weeks for the next one. And they like to sleep high up in gum trees.

Wednesday, January 30, 2013

Not today thanks, Diabetes, I can't really be bothered

Some days I really wish we didn't have diabetes in our lives. Some days I just accept it, don't even think about it and go about my business as if it was what we had always done. Some days I'm even almost thankful for the positive things it has brought to our lives: new friends, an amazing online (and offline) community and an enhanced knowledge of nutrition and healthy eating. But some days I really just wish it would go away and leave us alone. I just plain can't be bothered with it.
If only diabetes were knocked down as easily as these pink fairies.

I suppose it's the same with anything, right? You can be happily married and still have days when you think how nice it would be to be single and go home to an empty house with no one's clothes on the floor but yours. And you can love your work but still wish you didn't have to do it every day. 

I even have days when I wish I didn't have kids. I don't mean that I would wish them away. Only that maybe it would be nice if they belonged to someone else. Then I could play with them all day and I'd be the fun auntie or babysitter instead of cranky mammy. They probably wouldn't make much mess because they'd be entertained and I'd have the whole evening to do any chores before having dinner at a respectable time of 7.30pm. Even better is the scenario where this isn't my house either. I could do a rudimentary pick up of toys before their mother gets home and then go home to my fashionable clutter-free house which is totally clean and tidy because no one is ever in it. I could smugly think "I blame the parents" when they misbehaved or had tantrums, instead of wondering what I was doing wrong. I could theorise with myself as to why they presented certain behaviours or traits: they aren't shown enough love/discipline, the parents are too strict/soft, they go to bed too late, the parents can't control them, they don't eat the right foods. And I could smugly imagine my own future children who I would raise perfectly and who would never do the things these kids do. 

But the thing is, even on those days, my kids have cute moments, affectionate moments, vulnerable moments, moments of such development and clarity that I look at them and think "are you that same small, squawking pink creature I gave birth to? You really are amazing." Moments where I can honestly say I'm proud to be their mother. They are full of promise of what the future may hold; of all the weird and wonderful things they will bring into my life as they grow and develop their unique personalities; of the pride that I will feel when they do something new, or different, or amazing or just because they are being themselves; of all the many challenges they will bring that will develop my own strength and character. Every day they teach me more about myself than I learnt in the entire 33 years I lived before they entered my life. 

Diabetes is not cute. It is not affectionate, vulnerable or promising. At best it is slightly inconspicuous and a minor inconvenience. Okay, so it is challenging, and it does teach me a lot, I'll give it that. I even have moments of pride when I totally nail something. But is constant, exhausting, always there, always a consideration, like having another, very demanding, child. It makes even the most confident, relaxed parent second guess everything. Imagine trying to figure out if your child is just refusing bedtime or is actually really sad because their little world has been turned upside down. I know we haven't seen the worst this disease has to offer. We've had no serious hypos, no stubborn highs and no hospitalisations. But Diabetes, I really just wish you would do one. 

Monday, January 28, 2013

Living with Diabetes: The way we speak (three months in)

Miss Chief at diagnosis.
For some time now I've been meaning to post an update to my Sugar Plum fairy post about Miss Chief's Type 1 Diabetes diagnosis. Actually, if I was to try and summarise what has happened in the last three months it would be a really long post that I doubt many of you would find the time to read. Truth is I don't have the time to write it. One thing that living with diabetes does, in the early days at least, is chew up your time, leaving little for much else. And the longer I wait to post, the more time passes, the more our way of living with T1 changes and the longer the post would get and the more I'd put it off.

So I figure the best thing would be to post a little bit each day or once every few days. I will try to be organised about it and cover a specific topic, but I don't think that really reflects my current state of mind so it will probably be more like a diary. Some posts will have a positive spin, others less so and many won't exist because I'll be too damn tired to write them. So far that has been my main experience of living with diabetes - bloody exhausting.

So before I go off and do my pre-bed check of Miss Chief I'm going to do a little dictionary, or Diabetionary, of words, phrases and acronyms that have become part of my everyday vocabulary since October 23rd 2012.

Basal/bolus: A particular insulin regime which consists of providing a low basal dose of insulin throughout the day and then additional bolus doses with each meal. We use a slow-release long-lasting basal in the morning which lasts about 24 hours. Then we administer a fast-acting bolus with each meal, which peaks after 1-2 hours and drops off significantly after 3-4. By 4-5 hours it is out of the system.

BGL: Blood Glucose Level. We do these regularly throughout the day or night by pricking Chief's finger and squeezing blood onto a glucometer. We also call this the fairy test, fairy blood, check, levels, numbers and often just say "so what was Chief?" and we both know what we're talking about.

CGM: Continuous Glucose Monitor, a highly sophisticated, desirable and expensive device that significantly reduces (dare I say eliminates) the need for finger pricks. Aside from the expense the only downside of this is that it is a wee bit bulky but basically it sits on your tummy with a little sensor under the skin and continuously measures your BGL. It can communicate directly with your insulin pump leading to much better control and is just the most awesomest thing for getting a good night's sleep. Not that we have tried one but I'm assuming it would be.

Clinic: Diabetes clinic, attended by T1 kids (and adults) and their carer(s) every three months. Overall BGL is looked at, a paediatrican does a general check which may include scrutinising the log book to determine whether insulin requirements are changing, discussing the insulin regime to ensure it still fits in with the patient's lifestyle, examining injection sites to ensure they are being rotated rather than sticking the needle in the same place every time, which can cause problems, and doing the same with the fingers, writing prescriptions for insulin and glucogen, and coordinating tests for other auto-immune diseases, such as coeliac. There are also diabetes educators, psychologists and dieticians on hand to answer questions and offer advice.

Coffee: Not exactly a new word but a word with a slightly different meaning since diabetes entered our lives. Before it was associated with socialising, sophisticated tastes (I never drink instant), cafes, frothy cappuccinos, days out. Now it is a vital tool in my diabetes carer's survival kit. I have yet to meet a D-mum who doesn't drink coffee.

Diabetes Kit: Also known as "the kit" this contains everything Chief needs and it goes everywhere with her. Includes log book, pen, glucometer and lancet, plus spare glucometer that measures ketones and spare lancet. Spare glucose and ketone testing strips, finger wipes, tissues, basal insulin and bolus insulin pens, hypo kit, needle tips, sharps container.

D: see T1D.

D-mum: Mother (usually carer) of a T1 child (or adult). See T1D.

Fairy Pen: Not technially a diabetes phrase but it's what we call the pens that we use to inject Chief's insulin.

Free snacks: are those with little or no carbs in them, that Chief can eat at any time - so long as she doesn't fill up on these instead of carb foods after having insulin, because then she might go low. I often pack a selection of free snacks in her daycare lunchbox that she can have either after lunch or as an extra snack on hungry days. Unfortunately "free snacks" are not actually free. Reminds me of the whole "free speech, free beer" open source software debate.

Glucometer: Usually just referred to as the "meter", "glucose meter" or "BGL meter", this is what measures the BGL. There are lots of different types, of which we have tried 3. The main one we use is called the Accu-Chek Mobile and is an all-in-one device where the finger pricker can attach to the side of the meter. Instead of fumbling with a test strip wrapped in foil and sticking that in the meter 7 times a day, we pop a cassette in the back with 50 tests in it. The cassette automatically winds the next test strip round and we never need to touch it. Likewise, instead of replacing the finger pricker needle (lancet) every few days (they say every time but as if!) we stick a cartridge of 6 needles in and this lasts us about 1-1½ months. Chief prefers this finger pricker as it seems to be more gentle and daycare love the fact that they have one device to pull out and don't have to faff around with test strips - their time is strapped enough as it is. I prefer this one at night as I can do the test much more quickly - so long as I have access to one of the kids' gloworm toys otherwise I can't see what I'm doing. Apparently they're going to make a version with a light for use at night so hopefully they'll send us one to trial.

Glucogen: A scary looking injection you have to give if a diabetic has an unconscious hypo. Paramedics are trained to give this so you don't have to if you're too freaked out. But obviously the sooner the patient gets it the better. Glucogen can also be used when a diabetic is sick and refusing to eat, using a less scary looking needle, which is still a fair bit scarier than the pen needles that we use for insulin. (Can't imagine how scary diabetes must have been in the old days.)

HbA1c: Without getting too technical this is a red blood cell glucose test (Hb - haemoglobin) conducted every three months. Red blood cells last up to 4 months so this gives a good indication of your overall control, kind of like an average BGL. D families get very nervous about this number just before clinic.

High: as in BGL is higher than we would like, causing hyperglycaemia and associated symptoms such as irritability, hyperactivity and sore tummy. High for us is above 11, depending upon the time of day. Above 15 or 16mmol/l Chief starts to feel unwell. But as a normal 4 year old she can be hyperactive whatever her level - groan! The meter will measure up to about 27mmol and then read HI. High BGLs can be caused by too many carbs, too little insulin, illness, excitement or other hormonal activity (growth, puberty etc.).

Hypo: No this doesn't mean hyperactive. I often hear people say their kid went "hypo" and I wonder what the hell they mean. I think they mean "hyper". Well, Chief does go hyper, hyperglycaemic that it is, which often results in hyperactive behaviour. But she can also hypo, that is suffer from hypoglycaemia, or low blood glucose. Technically mild hypoglycaemia occurs when BGL is below 4.0 mmol/l. With lower levels come certain symptoms which differ from person to person. They can be lethargic to the point of being unable to move, light-headed to the point of behaving as though they are drunk. They may be quiet, or they may be agressive. They may be incredibly hungry or they may be pale and shaky and refusing to eat. Severe hypoglycaemia can lead to unconsciousness or a diabetic coma, which is a serious condition. Chief hasn't had many lows so we haven't yet determined a concrete set of symptoms for her.

Hypo Kit: A kit of hypo treatments. Ours contains glucogen, jelly beans, juice and a muesli bar. It goes everywhere with Chief but at home we use milk to keep her up and if we need to we give her honey, a jelly bean or juice to get her up quickly.

Ketones: These are toxins in the blood. They can get there with prolonged high BGLs, illness, or if the body has recovered from a severe hypo. Diabetics check ketones if they have a series of high BGLs as they can be difficult to clear if you can't produce your own insulin and a build up of ketones can cause serious illness and hospitalisation.

Lancet: The finger pricker.

Low: A low BGL, as in "she's a bit low" or "she's having a low". This can be quite relative. If you've been high (high BGL) for a while, such as before diagnosis, then a moderate or normal BGL could produce feelings of being low, but generally a low is considered around 4.0mmol and without hypo symptoms. Before bed a low might be 6.0 mmol as generally a higher number is preferred to get you through the night without risking a hypo.

MDI: Multiple Daily Injections. A method of administering insulin, as opposed to infusion via an insulin pump.

Mmol: Millomol. I don't know what this means other than it's the measure of glucose in the blood. For a non-diabetic a normal BGL would be between 3.5 and 8.0 mmols per litre of blood, or mmol/l.

PWD: Person with diabetes. I don't often use this but I do now know what it means. Also CWD, child with diabetes.

Sleep: Again, not a new word but one with changed significance. Before it was something I dreamed of getting more of when Happy One got a bit older. Now it's something other people get.

T1D: Acronym for Type 1 Diabetes, also referred to as simply T1. Amongst the T1 online community a commonly used acronym is D. This is extended to D-families, D community and D-mums. Outside of that community T1 is preferred so there is a clear distinction with Type 2 diabetes.

Target BGL: The ideal BGL falls between  4.0mmol/l and 8.0mmol/l. However, most diabetics sit within this range 60-80% of the time. Over the last 2 weeks, since we increased Chief's basal insulin dose she has only sat in this range 35% of the time (see chart below). However, she is in the honeymoon phase where insulin requirements are small and often changing and fine control can be difficult. What is important is that she has improved. Since 1st December she has been in that range only 28% of the time.

Well, I seem to have written way more than intended. Well done if you're still reading. No doubt there are many concepts and terms I have missed but hopefully this will allow you to better understand future posts as I'm sure more than a few will be on this subject.

Friday, January 25, 2013

Can you help Ironman Anna raise money to cure diabetes?

Can you donate a small amount to help a friend of mine raise money for Type 1 Diabetes research?

A very good friend of mine from university has entered the Melbourne Ironman to raise money for the Juvenile Diabetes Research Foundation. Anna Jepson is one of the most amazing, dedicated and committed people I have had the pleasure to know in my lifetime. As well as being a very successful accountant, and an amazing athlete and musician, she works tirelessly to raise money for causes that are close to her heart. After taking part in an uber-marathon in South Africa in 2011 (despite suffering from a tropical illness) to raise money for breast cancer research, I wondered how she could possibly top that. I am so pleased to have someone like her raising money for a cause that is so important to me and my family. Anna has another close friend with a 6 year old daughter with Type 1 Diabetes.

Anna's fundraising page is 

Here is what she has to say:

I'm hoping to raise 5 or 6 grand over the next 4mths, which Macquarie Bank will match to take my tally up to about $10-11k which would be fantastic.
there is a whole team from macquarie going to the barossa for a 160km ride for jdrf in january as well.
The hopeful thing is that in the last 3yrs since i found out about it there has been some progress.  I'm just praying we can help find a cure in the near future rather than the longer.

Anna completed the 160km JDRF Ride for a Cure last weekend and along with over 300 other riders raised over a million dollars for diabetes research. The Ironman is a mega-triathlon consisting of a 3.8km swim, 180km cycle and 42km run. Did I say Anna is an amazing athlete?

She has funded the extortionate entrance fee from her own pocket. Her employer, Macquarie Bank will match dollar for dollar any donated funds so essentially you will double your money.

I will very soon be writing a blog post on what it has been like to live with diabetes over these last few months but in the meantime I will just tell you that it isn't easy for anyone involved, least of all The Chief. Four needles a day, finger pricks seven times throughout the day and night. Her strength, bravery and acceptance both astound and inspire me, as well as making my heart ache. I would do anything to take this away from her. I can't, but raising awareness and donating to foundations such as JDRF is a reasonable second best. 

I am extremely hopeful that Miss Chief will live to not only see a cure but to benefit from one in time to live a long and healthy diabetes-free portion of her life. Even since her diagnosis just three months ago there have been tremendous results amongst scientists searching for a cure. Recently, Australian scientists discovered how insulin unlocks cells to allow the glucose to move through from the blood; up until then this had been a mystery. In November scientists announced successful testing of software that acts like an artificial pancreas and clinical trials have already started for that. A monitor to warn of overnight hypos has come onto the market. A nasal spray has been developed that can deliver insulin to rats. And stem cells that can turn into insulin producing cells have been discovered. There is so much happening.

But along with all of the positive stories we are still hearing stories of tragedy and sadness, of children dying of undiagnosed diabetes, and just a few days ago 30 year old professional skateboarder, Lewis Marnell, passed away from hypoglycaemic complications. Yes, this disease is a big deal. It's a constant source of worry, anxiety and threat for those that have to live with it. A cure must be found.

The 2013 Melbourne Ironman takes place on 24 March. Please find the time and a small (or large) amount of money to donate to this incredibly worthy, very promising, and excruciatingly personal cause.

Thank you from me and Miss Chief.