Deck the halls with Counting and Insulin

It is coming up to the time of year again where we all enjoy the time with family, presents and all the food and drinking. This all sounds great however for those either with T1 or supporting a child with T1 it can be more daunting than exciting.

Having parties where snacking is normal, preparing for Christmas parties and setting up for a successful New Years Eve are all possible and just need some focus and planning.

When I was on MDI I found Christmas to be restrictive because everything was set amounts and there was no such thing as snacking. Now that I am on a pump and carb counting it is a totally different game. Making smart decisions is still my priority however management can be easier. Giving small boluses through out the day if not knowing what is coming or I have used the square wave bolus in the past when you have a little control and knowledge on what is to come through the day. One thing I love about Christmas is that the traditional main course has plenty of low carb options. Whether it is Ham, Turkey or even Prawns here in Aus you can go for your life. I always am grateful to myself after Christmas when I can think back and know that I made the smart choices.

Now for those that are able to drink and head towards Christmas and New Years make sure at least one person knows what to do in the worst situation if it was to occur. Preparing is the same as any night out, never start out with an empty stomach, make smart choices and keep an eye on things. If you can't keep an eye out then trust someone who can. Having my CGM in place and being able to see what is happening on the screen at any one time is a calming presence as it allows you to quickly look down and know what is happening without stopping or interrupting your night. Also seeing as a low after drinking can come in the early hours of the morning while asleep knowing that my pump automatically shuts down in the event of a imminent Hypo.

Smart choices, good counting, insulin and a little planning is all that is needed to make sure your holiday period is only full of good times.

CGM

                                                   

Last yeah it was approved to have the CGM technology made available to all people with Type 1 Diabetes who are under 21 in Australia. This is an amazing step and will help dramatically in improving lives of those and those who care for people within the life long battle.
As you could imagine though the life with disease doesn’t finish when you turn 22 and the next goal is to see it available for everyone. There are huge benefits to making it available both from a individual and a country perspective... I thought I would have a go at putting a few of them down -

1. Information is King - no matter what decision one makes in life we gather as much information as possible to ensure that we make a decision that is going to benefit us into the immediate and long term future. Well why would the decisions we make on our everyday health be any different. Doing traditional finger stick tests will still need to be a part of Management there are a lot of holes in the day that most of us have only an idea on. The CGM technology fills in all those holes with readings every 5 minutes that it is attached and in operation. So for someone that would do 10 blood tests a day (this would be a lot for most) the CGM would do more tests in just 1 hour in the day. So in multiplying this out we are seeing information on 288 CGM readings per day. I think you would agree that this Information is King.

2. The possibility for finer control - With the results of the 288 CGM readings you have the ability to refine your insulin intake and especially when on a pump you can change both your basal rates and basal rates down to each minute of the day. The minimal increments that can be made, down to 0.025, units of insulin changes means control can be exact. It will not take away having to monitor and manage but that is what Type 1 Diabetes fundamentally is. You have to know that everything has an effect and no matter how much you think your under control things will always change.

3. Reduce anxiety - Being both someone that lives with T1D and also a parent of a child with it I see how the anxiety and worry that comes along with it can effect more than just the individual living with it. The CGM technology helps reduce just that the worry about what is happening and the anxiety around missing something. You can start to be proactive rather than reactive all the time. Be alerted before it happens.

4. Cost of emergency medical treatment - I strongly believe that this technology has the long term ability to minimize the chance of ending up in our hospital system over and over again. The ability to predict things before they get to a point of needing intervention can only be a good thing for both the individual and the greater health system.

No longer is randomly checking your blood glucose levels by pricking your finger the best management method. Technology has been developed that will not only help each and every type one diabetic but will also help all the loved ones that care and love the type 1 diabetic. As children and families become used to the technology to then take it away when they probably most need it when they are heading into the wider world, often by them selves, they will have less than appropriate amount of support to ensure they are fit and healthy as they begin life in the wider community

In the wider picture around the world it is time for governments to understand the true cost that this disease takes both financially, mentally and physically. The price of what keeps us alive is difficult to justify and to hear that people go without around the world is heart breaking.

Type 1 needs to stand out and stand separate so that governments understand that this chronic disease is one that is can be managed better with the technology that is quickly developing however governments need to understand and listen. Stand up and educate.

The pumps infusion sites

                                        

We constantly talk about to pump or to stay on MDI, which pump is the best and continual glucose monitoring. Don't get me wrong we need to have these decisions and conversations but we also need to keep in mind some of the day to day decisions that come up. After being T1 for over 28 years now I am seeing some effects that cause me to think about things that didn't even consider 15 to 20 years ago.

When on MDI I rotated my injection sites from my abdomen, arms and legs and for the past 12 years I have been rotating my pump infusion sites on my abdomen and sides. All in all everything is good with my site locations however one thing that I have done is to make sure that I have limited the possibility of having infected sites. It is recommended that the plastic cannula sites are only used for 3 days and the metal cannuals are used for 2 days. Why is that? this is because you have a foreign item in your body and it is only time before your white blood cells start to react to it. Also no matter how natural the insulin is that you are putting into your body you are still injecting / infusing a substance into the body in an area that is unnatural so there can be a limit to the amount of insulin that can be held before the cells become over-saturated and absorption becomes a problem.

So first I have always used plastic cannula's. One because it was firstly recommended and secondly because I have never had a problem with them so they suit me. I use the minimed quickset sites. These are recommended for the 3 day wear. Does this mean I have always made sure they were always changed at the exact time..... no because life sometimes takes priority and the site is pushed out a little. However it is always at the forethought as when the day 3 comes around the effect on your bgl's is right there. My daughter uses a combination of the short metal cannula's of the sure T's and the short plastic cannula's of the Mio sites. Because of her age, diagnosed at 2 and now 7 the metal canula's that won't bend and stop the flow was necessary even though it meant and site change every 2 days. Being used to the plastic early on with the metal canula's we allowed it to spill late into the 3rd day and wondered why her bgl numbers started to climb even though she wasn't eating. We triple checked that she hadn't eaten something we didn't know about and then went about changing the site. After drawing everything up we removed the site and were shocked as to what had happened. We were left with a hard lump under the skin and a yellow puss coming from where the needle had been sitting. Knowing that this wasn't something we wanted to happen again we made sure we paid attention to the days and effects of what can happen.

Absorption can also become a problem the longer the site stays in. The cells around the area where the cannula sits is accepting a substance that it doesn't normally do. So the longer you saturate these cells the more they have to adapt to what you are doing. If you ask them to do more than they are able then the ability to push the required insulin to the body becomes difficult.

Another problem that we have come across is the damage that can be done to the largest organ in your body - your skin. Every now and again, I do find it more with my daughter, the area around the site becomes itchy. Obviously as the irritation is under the tape scratching it is near impossible but leaving the tape in place will become a problem. Luckily my daughter and I are not allergic to the tape which would be difficult however maintaining clean and regularly changed sites limits the possibility of infections on the skin. There have been a few times where treating damaged skin is another thing that is added to the list of things to think about in a already busy day with T1D.

Obviously one of the main reasons to push things out is the cost of supplies and not wanting to waste insulin which is something I completely agree with. The cost of essential supplies that allow us to live is ridiculous and we all hope that one day governments across the world will understand and take at least one burden off our plate. One thing that you can do to minimize wastage of insulin at least is to only put the estimated amount for a 3 day period in the reservoir. I know this can't solve all problems but maybe alleviate one.... just a little.

Knowing that T1D is for life keeping your mind on the big picture is a must. You can focus on today and tomorrow however you run the risk of possible difficulties later in the future. Looking after your body now is a must. I constantly think about my daughter and how when she is a strong adult I want her to be as fit and healthy and to be able to not have resentment towards decisions that we were in charge of making while she was young. To me it is even more setting her up for a happy and healthy life.

For myself I do have some minor under skin scaring however this is inevitable and honestly is a very minor problem. I am still yet to have an infected site which I believe is a strong reason around achieving this. My biggest advice if asked is to know that everything has an effect and everything needs consideration for the long term.

Sick Days

Like living with or supporting someone with T1D isn't tough enough everything seems to be thrown out the window and you go back to the drawing book when you get sick. I still remember 28 years ago the main advice I was given to manage the days when things are not going to plan and a virus is taking hold.

"Continue to test, and test even more than usual. Never stop taking your insulin, even if you cannot eat but to combat that slowly sip lemonade or juice."

I think about this a lot these days because of a number of reasons -

1. How simple the advice is when your well and how without experience and knowledge you take it and use the information the best you can.
2. How dangerous it sounds or could . We didn't have blood testing equipment that could detect ketones back then and to be honest we very rarely had the urine strips on hand to manage to get a test done.

I sit and ponder about all the times through out my time as a T1D and I have to be thankful that the information I was given and due diligence, I have never been DKA. As I say that my had knocks the wood table beside me and hope that my luck continues.

Being a parent of a T1 I also know that the more information we have the better we can manage. Something that we didn't seek out earlier but know it is my life mantra. With my daughter we now know that, even before signs of a cold or sickness start showing her numbers start to go hay wire. It can be difficult to pinpoint however it is a process of elimination on everything else (change site, look at insulin validity or see if she has been sneaking food. This happens only rarely but still needs to be taken into consideration). Once we have eliminated all other aspects we begin the process of managing just waiting for the bug to raise its ugly head.

1. Apply temporary basal rates either up or down depending on where the levels are sitting. I have had a number of times over the years where no matter the amount of sugar I have to treat low blood sugar it will just not budge but on the other hand have bugs that push my numbers so that I need 200% of my basal rate while it takes hold.

2. Maintain hydration. Such an important thing to do for each and every person but even more so with having T1. I saw a post the other day asking how to help minimize ketones and one thing is to flush them out of your system by staying hydrated.

3. Have ketone strips handy so that your able to understand when they may be rising. I always believe that it is better to manage in short increments rather than leaving it for hours on end and trying to move a mountain instead of a rock. I have always been told that to clear ketones you need extra insulin and water. Insulin breaks down the ketones and the water flushes them out of the system. Ketones are simply put BAD. They have the ability to poison your system and if left untreated or at a high level then permanent damage can be done.

4. Don't be hard on yourself. A few days of being out with your numbers isn't going to hurt. Every time you get sick it could be different but learn something from each and every time you can. As I said before information with T1D is king. As your getting better know that you can get things back on track.

5. While I was on MDI I did follow directions to a tea and never missed an injection no matter how I felt. Many a time a Gastro bug would hit and the first thing I got was lemonade and apple juice so that I could continue to keep up hydration and continue having something that could keep my levels at bay while I was still having the insulin on board. Now that I am on a pump I still get the lemonade and apple juice however they are not needed as much at all. Used more for my daughter as she has a tendency to have ketones while still having a BGL within range or lower which means we need the insulin not to bring the BGL down but to break down the ketones so the juice or lemonade is used to manage. Non the less it is in the cupboard as an emergency preparation really.

6.  Keep in mind always about your options if things change rapidly. A few years back and only a year into our journey with my daughter she developed Influenza A as it turns out and after 3 or so days of managing to keep ketones and BGL's at a reasonable level it was decided that hydration wasn't the best and we needed more help. We headed into hospital and spent the next 3 days keeping things under control while we waited for the virus to move on.

Being sick sucks for everyone but is a part of life. As long as you are open to the information that is given and you have your plan and supplies then you manage the best you can while you can and never be afraid to reach out for help.

Burnout - Individual and family

I like this line from another post I read "would you accept a job that you worked 7 days a week, 24 hours a day with no annual leave or even sick days?" I know there is not an inch of me that would say yes but each one of us with T1D has exactly that, an endless job that does get the best of us sometimes and you fall into a state where you are tired, exhausted and you really don't want to or can't explain why this is happening to you.

Diabetes burnout, as much as we don't want to talk about it is a part of a chronic disease that we live with every second of every day. Burnout is just as it says you get to a point where you mentally don't want to continue the acceptance of either counting all the carbs, analysing the exercise, calculating the insulin, making sure that we have our numbers that can be always on a roller coaster are as flat as possible. It can begin with just one of these or it can be built up out of all of them at the same time. You become tired and to do the simplest diabetes task plays on your mind and frustration and anger rise. As an T1D adult that have lived with this for some 28 years I still go through times where I am just tired and question why me but I have also learnt to understand and recognise what is happening. I also believe that the biggest thing I have learnt is to accept what it for what it is and to process through it.

No matter how far I fall into burnout I ensure that my insulin and my tests are done but things that help are

• Telling someone that understands - Even if it is to say I hate it and I don't know what to do allows you to get the feeling from your chest and to have someone else help with the burden even just for a second. This is very much an emotional understanding that we all need and require.
• For me I treat myself to something that I wouldn't let myself have. I know that we can do or eat what ever we want, however I set myself limits both for control and long life health. For example I will go and get a cake or something similar, still have my insulin for it, but will go on the roller coaster that it brings. I will do this with no guilt as it is for a reason. I learn from both the feeling of control and lack of control. 
• Accepting and allowing burnout to happen over a 24 hour period also helps but I use sleep as the catalyst to start a fresh. Each day brings new things and the ability with T1D to start again. You have no food in your system and no exercise altering what your body is doing.

I have talked of this before but today I see another side, I see a burnout from a carer of a type one child and me a T1 adult. It has now been 5 years that my whole family has needed understand this battle and because it is very much second nature to me I forget that it can be scary, daunting, overwhelming, confusing  and out right unfair on those that don't know what the T1 is feeling but has the complete responsibility for management in ultimately keeping someone alive through the actions they do. Don't get me wrong I still have all these feelings but I suppose to understand the intricacies of T1 has allowed me a slightly more process driven with the ability to go head first in managing what has to happen. In one way removing some of the emotion if you like.

We, as a family, have adapted and taken on a massive amount of information in a very short time, this information is not just to do a job 24x7 but to do the job while being a teacher, role model, doctor, nurse, dietitian and biggest of all a parent. The emotional elements that come with the last in the list are the driving parts that allow the rest to fit into place. This is a remarkable feet that I cherish each and every day.

Today I see burnout not as I usually do. Not from me having enough but from my family who can get frustrated because numbers are not perfect, because sometimes there just isn't an answer, because to not test at night (which would mean nearly 8 hour sleep) is like saying we will run the tight rope and hope that everything is ok and we all wake in the morning and because we allow emotion to take over from procedure. This is human nature and is in each and every day and needs to be there but as doctors do they remove emotion to ensure the logical path is taken rather than the emotional one.

This burnout is difficult as it is all encompassing and takes you out at the core of your humanity. We will never stop no matter the burnout we will be in because it is our daughters life that is at stake. We will learn together and I hope as someone that has lived this battle that I am not only able to share with my daughter some do's and don'ts but also help my family with information that will hopefully just make things a little less stressful. I was going to say easier but I honestly do not think any part of T1D is easy and to say so would be to disrespect to what we put into each and every day.

Prior to my daughter I managed myself and kept the nuts and bolts to myself because other than fixing a terrible high or low all the other things could stay with me. 

This disease is a battle not only to the T1D but those all around. Those who care enough to know what is happening and those who want to take the time to take on another full time or part time job. Next time you see or meeting a T1D acknowledge those who spend every moment of there life managing, learning and adapting to ensure there loved ones will continue fighting to become some of the strongest people in the world.

From the words of a 6 year old with T1D

Hi All,

Today my daughter came to me wanting to have a dive into her daily thoughts. The ones she see's as secrets and the ones that scare her. I asked her if she would like to share them with you as I thought it would be a different insight into how this disease plays out in the mind of one that has had it for 4 years but still so young. Note all answers are her words from the questions I asked.


How would you describe Type 1 Diabetes?

Very hard and very scary. Cause I have to deal with needles and stuff like that.

Is there anything you can't do with T1D?

I can do everything but I cant go sliding down the slides at the park on my belly cause I'm afraid my pump will get scratched and hurt.

Can you describe what its like having a pump?

It's kind of annoying when sleeping as it can stick into you. Its actually true it can stick into you. Sometimes when I go to fun things I am able to forget that the pump is even there. Then when I stop I know its there again. I would much rather have the pump than have needles every time i want to eat something.
I have to thank my mum for saving my life as she tested me first and dad you saved my life for getting me the pump.

What scares you about T1D?

What scares me? It just that the needles and sensors can hurt when we do the changes. Even taking them off is such a pain. It drives me mad and scared.


Do you ever forget that you have it?

Ummm my sensor I know is always there but I forget that my site is there. The sensor is a big lump but the site is flat and I sometimes go to scratch and realize its there.
I never forget that I have diabetes and sometimes when I see other kids without it I start to cry cause I know I am not like them.

What do you think it would be like without T1D?

I think it would be more fun and happier

Why? -
       
Cause other kids can run

You can't run?
       
I can but I might go low. Everyday when I run I think I have to slow down cause I don't want to go low. Everyday my mum and dad have to bring a juice everywhere like a jungle gym or playground just in case.

Why would it be happier?
     
It would just be running around doing what ever I want to do. Diabetes kind of keeps you down.

Why does it keep you down? You swim, do cheer leading and everything your sisters do...
       
But when I went to school my mum had to come as no people there knew how to manage                    diabetes. Sometimes I wish for Christmas that my diabetes would go. I even asked my nanny for my  diabetes to go away.

Some scientists found something for type 2 but I'm type 1 and it is very hard.


What would you tell a friend you just met about your diabetes? -

I would tell them that I have diabetes which is your pancreas makes insulin however mine doesn't and my pump gives me the insulin I need. It doesn't matter if I run around you just play and nothing will stop me.


Talk about site changes and sensor changes?

My site I can't explain it, it is very scary. Every time my mum and dad are about to do it I see the needle and I tell them to hide it cause it scares me and my mind says that it will hurt. The sensor isn't that bad because I can't see the needle and when it happens it just makes me jump a little. I always say I can do it.

How is your life?

When I have diabetes the needles are very hard cause they scare me because they are going to hurt me but everyday I tell myself I will be alright and nothing can stop me. When I am sick I don't let it keep me down. I get up and do what I usually do and let nothing stop me. I hope in pools, Play at parks and do what I usually do.

If you had one message to send to everyone about T1 what do you think it would be?

I would say your the lucky one cause you don't have diabetes. I would want them to teach me about being a normal kid.

The Exciting next step

Ok so first of all an update on the health kick with the 640g and Smartguard . It has been around 4 months and I’m happy to say I have never felt better. I have lost over 15kg and increased muscle mass and have done this with no major hypos. I monitor my levels very closely and make sure Smartguard is in place so that it stops me from having to treat minor lows.

I have had what I would say is a good HbA1C over the last 14 years with it predominantly between Ng I. The 5’s however I was elated when I got my recent results and I had gone to 4.9.

There is 2 ways to look at the A1C result because it can be misleading or it can look false because if you have a lot of highs and lows it will average it out so you don’t see the peaks and troughs which as we all know is bad. It needs to be seen in conjunction with everyday results also.

If I had been having excessive amounts of treaded hypos I wouldn’t be happy with a 4.9 result at all however knowing through having my pump and CGM on my side always I know that I am within my set range 99.99% of the time which is great to me.

Now to what I’m even more excited about - the future of the technology that is coming for us. Having the 640g pump with the CGM and Smartguard has been a game changer for both me and my daughter , in all honesty our whole family. But this is only a step towards the goal of being able to have a certified half closed loop system that will be able to monitor your BGL’s in real-time and make decisions for you. Scary I know but with the confidence I now have with the current Smartguard instance I have complete faith that the next step will make an even better impact on living life with this disease.

Do not get me wrong we are still hanging out for a cure but I do t think we are much closer to that than we were some 30 odd years ago when I was diagnosed so I sit and watch and take advantage of the technology that will take at least one decision from me and automate it in a natural way.

So what am I talking about when I say a certified half closed loop system. So the Medtronic 640g pump was only the first step of many. This system predicts lows and shuts down the pump to lessen the curve of the drop. Then when rising again it will restart giving the set basal rate. This works great but there is still the need to manage basal rates and also manage to bolus and give corrections for higher BSL’s.

Now the next step is the 670g pump. This has been released in the US however we are waiting for the approval here in Aus but we hope by early 2019 it will be here. This pump when combined with the CGM takes automation further. It still has the prediction of the lows however when in auto mode the algorithms take the need of basal rates away because it reads your BSL and makes real time calculations to set the rates automatically. It also self corrects for highs also. To me this is amazing... scary but amazing. This still isn’t a fully closed loop artificial pancreas but being able to focus on each layer and step allows for the step that is a little closer to having a device with each component and layer working in unison.

One thing I taught myself a long time ago with this disease is that everything we do at one point or another is scary. Whether it was the first time you gave yourself injections, the time where you had a bad low, the time where a virus threw you into DKA or even the time where you move to a pump and start to slowly trust that it can help you control things. All of these scary times can be overcome by information, practice and giving it a go. I tell my daughters in general life that to understand something and to have a true opinion you need to at least try and it is certainly no different here.

This technology effects our whole family, it allows us to sleep at night knowing that we won’t just get woken up with alarms but we will have the pump working with us to keep us safe and to allow us to wake up the next day. It allows my daughters (and trust me they are now old enough to hold me accountable if I am having a rough management day) to know that everything will be ok. Not just now but long I to the future as we stand the best possibility of keeping complications at bay by having great control.

I tell you what I’m more excited than fearful with this disease by having technology that will make a long life easier and more manageable. No it’s not a cure but while we wait I am looking forward to the steps to come because this is only the start.