Diabetes Blog Week- Day 2 – Feeling Lucky

The Cost of a Chronic Illness – Tuesday 5/16  Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?

I find it hard writing this post. We live in Australia and if I were to complain about the little things that annoy me I would sound pathetic. There are people in the world who do not have access to insulin. This is why charities like Spare a Rose are so important.

I know there is such an awful situation in the USA at the moment. I follow what is going on on Twitter and I feel sick for everyone there. The stress of not knowing if you will be able to afford insulin or the sacrifices that will need to be made must be very scary indeed.

I do not know the feeling of worrying about being able to afford insulin. My son has a healthcare card which gives him an even greater reduction on his insulin, meter strips etc for as long as he is a student. We have a supply drawer full of needles, meters, ketone strips, glucagon etc.

We have access to an amazing team locally who will see us as often as we need and are available via text and email when things go wrong. Our paediatrician is available and has a good knowledge of diabetes. We see a paediatric endocrinologist every six months. How lucky are we?

My son, if and when he wants to, can have a pump to use to manage his diabetes. We are lucky enough to be able to afford the private health care which would make this possible.

A recent bitter sweet victory was the funding of CGMs for under 21s. Why bitter sweet? It’s fantastic for under 21s but what are they expecting to happen when those kids who have become reliant on the CGM turn 21? A lottery win? What about adults managing their Type 1 diabetes? I can only imagine it must be very hard for them if they want a CGM and cannot afford the costs. We can only hope that this subsidy will be granted to all those with Type 1 diabetes.

We have access to great food and have jobs which mean we can eat well every day.

I know there may be others in Australia who may not feel so lucky. I can imagine our story would not match the experience of everyone here.

It is so sad that our experience is not that of all those who have diabetes. I only wish it were!

 

Diabetes Blog Week- Day 1

Diabetes and The Unexpected – Monday 5/15

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected? 

I’m going to tackle the latter part of today’s challenge! 

Context: My son was diagnosed with Type 1 diabetes three and a half years ago.

GOOD THINGS DIABETES HAS BROUGHT TO OUR LIVES

AN ABILITY TO DO MATHS– I really do suck at maths and my poor wee brain turns itself inside out doing calculations for new recipes. I find now that I can add carbs up in my head and divide them by the number of people eating the food with greater speed and accuracy. It does take my total concentration. If my husband comes across me in the kitchen with a furrowed brow and strange facial expression, he knows to leave me alone. I’m either counting carbs or doing my pelvic floor exercises! If I can ever master doing both things at the same time, I will let you know! 

A KICK ASS ATTITUDE – I used to worry about what people thought of me. Now? Not so much. I have taken a school principal and his deputy to task when my child was unsafe under their care. I know how to cut to the chase with an issue and I am afraid of no one when it comes to my children being safe. 

ACTING SKILLS – there are days when I am exhausted either from worrying about all the things mums stress over or have concerns about the added whammy of having a child with Type 1 diabetes thrown in. I work full time as a teacher and I do totally love my job but there are days when I’m exhausted and would rather stay home and binge on Netflix. I can’t so I slap on my makeup, and go to work. 

I know that my son has his own version of this. After a rocky night, he still gets up and goes to school and does his work. He must feel pretty crappy at times but he never lets it show. Sometimes we have a quiet hug before he goes out as I need him to know that I get it on some level. I may not have diabetes but I am his mum.

MULTITASKING I’ve become really good at faking total engagement in meetings and in class whilst being able to imagine where my child is, and what his blood glucose levels might be. You know what? I must be bloody good as no one has ever noticed and when there are less stressful moments, I can race through work related tasks with a speed and focus that I did not used to possess. My nodding at meetings is in all the correct places and, after over twenty years in this job, my classes don’t actually require my 100% attention.

My son is an expert mulitasker who can be heavily involved in a rugby game yet still read my frantic facial expressions from the side line that he needs to check his BGLs. He can quickly come across and do a check at half time without losing his concentration on the game. That is impressive.

GREATER COMPASSION-  It reminds me of when I was pregnant and I would get teary over ads on TV. I am hopeless when I see a family experiencing a difficult situation. It doesn’t need to be diabetes related. I could cry for the kids in my care who have extra challenges in their lives and I carry their stories with me and change how I deal with them and their families as a result.

This (Aretha Franklin I Say A Little Prayer)is my anthem as I’m looking in the mirror in the morning, getting my ‘game face’ on for the day ahead. 

I can see this in my three boys. They get that life can be tough for people for so many reasons and they are not quick to judge. This will be a great skill for them to carry forward into their adult lives. 

AN ABILITY TO FEEL LIKE YOU ARE FAILING REPEATEDLY YET NOT GIVE UP- I’m Scottish and I take my inspiration from Robert the Bruce ( here is the story) watching the spider in the cave. We chase the ever elusive perfect blood sugar levels. We very rarely get them in range for a whole day at the moment and yet every day I see my son get up and get on with life without ever complaining. 

We all try so hard to be perfect parents and diabetes has taught me that failure is ok! I cannot always meet the standards set, there is nothing to be learnt from this failure most of the time as diabetes does not acknowledge effort put in and yet we keep going and most of the time life is good. This, I think, is the most important of all.

Sitting with the sadness

Sometimes you just have to sit with the sadness.

My son has had type 1 diabetes for over three years. It has become part of what we do: an annoying interloper whose demands have to be satisfied at every turn but mainly we muddle along quite nicely.

Recently though, I have felt a real sadness settle over me. I’d been ignoring it. Life is busy so it’s not hard to keep on moving. Three kids, work, we all know some version of the routine.

Holidays are here now and it cannot be outrun any more. Tears have been a secret companion in the last couple of weeks and often for no apparent reason. So over the last few of days, I’ve not run away from how I feel. I’ve cried my tears and sat with my sadness and through that, I seem to have figured out why I feel like I do.

The baby that I had, that I fed, whose nappies I changed and for whom I had dreams and hopes, is turning into a man. I need to grieve that this adulthood which he is entering is not quite the one I had imagined. I know it’s not all doom and gloom and my mission every single day is to make sure that diabetes does not dominate. I didn’t, however,  think about how it must be horribly normal to go through the feelings of grief that a parent has at diagnosis at later times too.

Recently lots of things have been changing. It’s all the normal stuff : school exams, learning to drive, moving over to winter sports, going out more with friends, girls, work. My son is amazing and does not hold back on anything, which is exactly how a teenager should be. My job in the background is to figure out  how all this can be done and often this can involve emails to our fabulous educator (to adjust insulin doses)  or to the not so fabulous school ( to query diabetes provisions for senior exams or try to organise for the DE to talk to staff). I try to be discreet and not in my son’s face. I know he thinks about his diabetes too so I don’t want to add my concerns to any he may have. 

As his big brother is heading towards the end of his high school education, we are helping him plan what he may want to do. A deposit for schoolies (a horrid Aussie tradition, in my opinion) has been paid from his savings and university open days will be visited in the upcoming months. This is what has forced my brain to consider the options for my second son, the one with Type 1 diabetes, who will have all these decisions to make next year. 

I could vomit at the thought of him taking off to schoolies for a week. The temptations, in all their shapes and forms, are huge there. Then what about uni?  We do have a local uni but why shouldn’t he go off and experience the fun and independence of undergrad life: freshers week, juggling a part time job with uni, sleeping in shared accommodation, etc. My mind has been racing ahead in a way that I have until now managed not to do. Taking on one thing at a time has got us through these last three years so I need to stop worrying and live life now. The future will come soon enough.

Now that I know why I am feeling like this, the tears have stopped. I’ve gone back to doing what I did when my son was first diagnosed. 

I’ve been walking and thanks to a new family subscription to Apple Music, I have the funkiest playlist which I play at top volume as I pound the streets. These cool sounds and the incessant beat of the tunes of my youth, with a few modern numbers added in by my kids to keep me up to date, do not allow my brain to worry. 

The Smiling Mind app on my phone has been used every day and the breathing exercises and focus on mindfulness are really helping me regroup.

Last night, I was feeling a bit low after a successful but tiring camping trip. Connecting with others who understand about diabetes felt like the right thing to do and a pleasant hour was spent with the amazing people on #OzDoc on Twitter (always there on Tuesday evening from 8.30pm, please do come and join in). I’m so glad I did. I needed to be amongst adults who had survived those years and who, despite issues they may have, are living good lives. 

I’ve sat with my sadness and I’ve looked it straight in the eye and I’m fine.

Celebrating being average!


I am average, my kids are average, most of my life is fairly average and I commit to celebrating this! We need to celebrate the average! Why is being average frowned upon and overlooked when that is what most of us are? This is my own personal protest cry for common humanity! 

I have three fantastic kids who are average and I am not ashamed of that. I hold my head up high and I love them with every ounce of my being. They go to school and do all their work, they play multiple sports, they have friends and people tell me they are lovely, polite boys. Why should I be made to feel that this is not enough? 

There is such pressure on our children to excel at everything or at the very least at something. Why are we not content to be what we are?  I see friends putting their primary school aged kids into tutoring to try and pull up their grades. These kids do their regular homework, then plough through the revision sheets issued by tutors. Their haunted little faces pain me as they are drilled to within an inch of their lives and have such high expectations put upon them to always do better. What skill set do they need to have for their future lives? Are they going to be astrophysicists or elite athletes? Why do we always seem to demand more and more of our children when they are already giving us their best effort but the results are ‘only’ average?

I certainly do not mean that kids should not excel. If your kid is in the gifted and talented category, good on them but for the love of God, please stop dropping that into the conversation! I get it you are proud and so you should be but I am equally as proud of my three children. I have tried to help each of my boys find something they can be passionate about. For them it is sport, in various shapes and sizes. 

I have decided to withdraw from this pressure! It feels so liberating but it is hard and I do need to keep myself in constant check. 

What caused me to rethink? 

Three years ago, my middle boy was diagnosed with Type 1 Diabetes. His life and our lives changed and numbers took on a far more significant role. Every day, my son checks his blood glucose levels multiple times, we calculate the number of carbs he is going to eat and from that the insulin dose he injects is calculated. He is growing and is very sporty so these calculations are constantly changed and modified in order to try to keep his levels in the sweet 4 to 8 mmol (72mg-144mg) range. Every three months an average is taken and we find out the results of the all important HbA1c. I’m sure many people (and/or their parents) with Type 1 Diabetes would acknowledge a certain nervousness when they are about to get this magic number. 

The night before this result is given, I feel sick and cannnot help but think back over the previous three months. We try so hard to keep those blood glucose levels in range, but real life gets in the way. Sport, illness and being human all interfere and I lie in bed picturing a big  zig zag with high highs and low lows. My son tries his hardest and so do we as his support team. It doesn’t matter what that number is, there is nothing we could have done differently.

When school reports arrive in the middle of a life full of numbers, it really makes me think. Don’t the same things, sport, illness and being human, impact on these school results? Yes they do and so I commit to stressing less about grades and results and as long as we are all trying as hard as we can most of the time then that is absolutely good enough!

I am an insulin pen

I am no ordinary pen.
My story is written in the veins of those whom I save every day.
There is no ink in me.
I push insulin through my nib into the flesh of those who need me.
Hands grasp me, dial up the dose required and plunge me into their flesh,
Multiple times of every day of every week of every year.
My needle pierces the skin, bringing a sting of pain.
Some consider me inferior, as technology could easily replace me
Yet
I am loved by many for my lack of intrusiveness and for the comfort of knowing that I will never let them down.
I have hidden strength in my little vial and never forget this.
Treat me with disdain and I can take you down.
Love me, handle me with care and attention.
Because of me, people lead lives both ordinary and amazing.
This is the gift I give.
The rest is up to you.



King of the Road

Our eldest two boys are only 17 months apart in age. It’s almost like having twins. 

We live in New South Wales, Australia. When you learn to drive here, you firstly do a computer based theory test to make sure you have the knowledge of the rules of the road. You can do this as soon as you turn 16, get your Learner licence then you have the minimum of a year in which to do 120 hours of driving practise. Once you have turned 17 and have done  your 120 hours, you can sit your practical test in a car with an examiner and then you gain your P plates which allow you to drive alone (with some other restrictions on speed, passengers and alcohol consumption thrown in to keep you safe). Got that?

Our eldest got his Ps last year and has now gained the nickname Über. After surviving 120 hours in the car with him, he owes his loving parents a few lifts here and there.

Onto number two child, with the added complication of Type 1 Diabetes thrown in. 

Number 1: 

Getting your L’s – a letter is required from an endocrinologist or paediatrician. A sight test is needed here and, from what I can understand, this letter basically lets the authorities know that the person has controlled diabetes. From what I’ve understood, this letter is required to be submitted every year. How and where I have yet to figure out.

Number 2:

Working out the rules around driving with Type 1 diabetes. You would assume that the Roads and Maritime Services who issue the Learner’s licence would be able to tell you that. Wrong! After googling myself into a zombie like state #OzDoc came to the rescue. Serendipity is a wonderful thing as the topic on the Tuesday night #OzDoc twitter chat was driving. I was given advice on how to help my son with hypos and driving, the documents we needed to read and so much more. How amazing is it to be in rural NSW where you don’t really know anyone else with Type 1 diabetes and be able to quickly get the advice you need to help your child.

Number 3: 

Navigating the numbers. The first couple of hours of practise went well. My boy is a natural and unlike the first few outings with his big brother, I did not swear once!  It’s been so lovely to spend one on one time with him driving around our beautiful area, whilst chatting. When it came to the third time going out, he checked his BGL and was 4.8. What to have? 

There was no advice quickly available online about how to get that level up to 5.0 without pushing it too high in the other direction. A fast acting hypo treatment seems to go against all we had ever done, given that this 4.8 was in the lovely normal range. I puzzled over this then asked on twitter what to do. Several lovely tweets with suggestions came back and from those, my son’s preference is to have a freddo frog. Good choice!

The next day was accompanied with an unexpected hypo just as we were about to go out. Things suddenly felt more complicated. Have a hypo treatment, wait till the level comes up to 5.0 then wait half an hour and check again. This took 45 minutes and the window of opportunity to drive had closed.

Number 4:

Finding a sympathetic driving instructor. Actually, this turned out not to be such a hard thing. We had used this instructor for our eldest child and knew he was a good man. I sent him a text to book in our second son and let him know he had Type 1 diabetes. I sent him the link to the NDSS document ‘Above 5 to Drive’. 

A short while later, I received this text: ‘Had a read of the link and thanks for the info . I will take care of him and tell him to always say if there’s a problem. And if he ever needs to cancel, even if I’m at the house, it’s all good with me and tell him never worry 😊’. Wow, wow and wow! Imagine a world where this was the normal reaction to Type 1 Diabetes.

Ok, 4 hours done, 116 to go!

What I’d love to write to my son’s school

Hey

Yes it’s me again. The one whose eye you very carefully avoided when you saw me at school the other day. For your information, I didn’t even want to talk to you. I was there with another of my children. It was their moment. I respect that and so should you.

I know you saw me. I’m aware that you consider me to be a pain in the arse and quite frankly, I don’t give a flying duck!

Since my child was diagnosed with Type 1 diabetes three years ago, I’ve become an advocate for his rights. I have to because you don’t really look after his needs and I know for a fact that there are several other students at his school with Type 1 diabetes. I wonder if you treat them with the same disdain? 

I have never once been rude when I’ve approached you. I am direct as I’ve given up on the subtlety I previously favoured (see here)

Is it really that much to ask that the diabetes educator be allowed to come and talk to all the staff once a year? Can’t you schedule it in to one of the staff meetings? I find it incredibly rude that every single year I have to make multiple requests, with increasing forcefulness, before it is finally done. 

Last year, I ran out of energy and guess what? No visit from the educator! 

I have three children at your school and because of your lack of ability to deal with training, I have to be the one to send my child’s emergency care plan to teachers when there is an excursion. This doesn’t bother me but, as a consequence, I feel judged and I often don’t contact the school when there are issues with my other children, as I don’t want to be seen as ‘one of those parents’. That bothers me at times! 

I would not send them to this school if I didn’t believe it offered a good education and that most of the teachers really do care about the students, so come on! Step up and shoulder your responsibility in this!

In one of our conversations, you told me my child needed to speak up when he was in trouble with his diabetes. This phrase haunts me in rare dark moments and tells me you do not understand what happens to someone who, for whatever reason, and often through no fault of their own, has blood sugar levels which are very low or very high. I wonder what needs to happen before you realise? That is the question that rolls around my brain when I send off my child to your care.

It has, however, felt really wonderful to get this off my chest!

Yours,

Resting bitch face