An evoluntionary change is here! Medtronic 640G

Over the last eight years my little device that sits on my hip or in my pocket every second of every day has changed my life and it has become one of the most important pieces in my life which allows me to live my life to the upmost..... However, as stated in the title, an evolutionary change is here and I am excited to make the change.

 

The change that I refer to is the MiniMed^® 640G System^{^(}https://www.youtube.com/watch?v=wl6WDkxXjBc), Medtronic's next approved pump that not only has the state of the art technology and reliability that we have come to love in previous pumps but it also brings predictive technology (SmartGuard^™) to the forefront. In the Veo when connected to the CGM it has the assurance that if you drop low and have no response to the alarms then the pump will automatically shut down for a period of time. This sees you still having a Hypo which could be causing damage especially in young children. The SmartGuard^™ now extends past the ability to automatically shut down once you hit your pre-set low, to being able to predict 30min BEFORE you reach a low and stop the insulin delivery. Once the sensor reads that your going back to a stable levels the pump will begin again automatically.

This technology is one step closer to being a fully automated artificial pancreas. A step in management that we are all waiting for and the only thing better would be a cure.

If the SmartGuard^™ isn't enough Medtronic has gone above and beyond with other features. I have only had an initial play with the pump but the other features include -

• Waterproof!!!!!!! yes you heard right the new pump is now waterproof up to 3.6m. No more worrying about your little one running into water and freaking out that the pump is still on.
• Colour screen. Not only does the colour screen not even look like it is an electronic screen but the device has an inbuilt light sensor so that no matter if your in direct sunlight or in the shadows then the screen will be easily read.
• Programmability. The MiniMed^® 640G has the ability to pre-set various settings. For example if you or your T1 child has a usual exercise pattern or is doing PE at school then you can have a setting in the pump that is customised to be PE. You can have it so that you or a teacher can go and press go on the setting rather than change the settings manually (which could be dangerous until the user or operator is experienced). The setting will go for the desired amount of time and at the basal rate required. You can also pre-set meals which will also be a great benefit for little T1's.
• This pump has various alarms and alarms you can set for different times of the day. For example if your at work in meetings and you want to be discrete about your pump then during the day you can turn the alarm to low or off and then at night to ensure it wakes you up you can have it at a higher alert tone.
• The device no longer looks like a pager. It has the look of an MP3 player or even a SMART phone. Its profile is changed to be portrait, which can be used in one hand and the overall look is nothing like anything else on the market. Colour range is still available which will suite the aesthetically challenged of us.

This is in no way the full list of benefits and as I said I only had a small play with the device and as I am connected and get to know my new best friend I will be able to delve a lot deeper into the benefits that I, my daughter and even my whole family will experience.

This is one of the most exciting times of my T1 life. Yes that means this change in my 25 years is as exciting and if not more exciting than getting the pump as it allows security and safety for me, my daughter and my whole family. If you want more information head to www.medtronic-diabetes.com.au

Disconnected - A day at Wet 'n' Wild

I woke  up this morning and after a week of having to drag the kids to work after school I thought it would be a great idea to get them out and take them to the local water park. This means swimming, water slides and a big day of walking around and climbing stairs.

OH wait I am on a pump!!!! This is something that comes to mind as to on of the concerns before going on a pump and for a lot if not all non pumpers the fear of having the pump connected to you 24x7 is scary and then the thought of having to disconnect for a period of time scares the hell out of most. Yes it is something that has to be managed but what day isn't full of management for this lovely disease.

So here is my day.

7am - Get up and have normal breakfast - BGL 6.5 mmol

7.10am - Have the children jumping around the house trying to get everything together for a day at the water park. BGL - 6.5 mmol

8.45am - Leave for the water park which is 40 mins away - BGL 7.2 mmol

9.45am - Standing in a ridiculous long line waiting to get into the theme park. (This may seem strange to say but in fact the amount of people and the length of the line is a critical part of what I was going to do today. The longer your standing still in lines the longer your not using the glucose up in your blood stream) - BGL 5.2 mmol

10.15am - We are in and locker for the day procured to hold all of our valuables. This includes watch, keys, wallet, a complete set change and spare insulin and yes my pump (and all the usual pool stuff). - BGL 5.2 mmol

The next 2 hours were full of water slides, swimming in the wave pool, sitting in tubes going around a lagoon, walking as quick as possible on the scolding ground trying not to burn our feet, climbing stairs and hills to get to the top of the slides and yes waiting in lines. The crowd today wasn't to bad so I think in the first 2 hours our longest wait was only 20 mins.

12.45pm - Ok the first check to see how things are going. The kids and I head back to the locker to test and reconnect for some lunch. I get my tester out and follow the usual process and to my surprise BGL 4.5 mmol. Now keep in mind my morning bolus amount was done at 7am so any residual insulin from that was gone and the exercise that we were doing was helping to keep the high sugars away. We had our lunch which consisted of a BBQ sausage in a roll and a diet coke. This was bloused for and I was connected for the duration of lunch. We then headed back to the locker to disconnect again. BGL 4.5 mmol

1.30pm - The fun resumes and I think it is time for the kids to head to one of the fastest slides in the park. Well for my 9 y/o anyway.

3.30pm - After another 2 hours of jumping to the shadows on the hot ground. listening to kids scream as they fly down the slides and just having fun the we all deserve from time to time it was time to call it a day. We headed back to the locker for another test, to reconnect and to collect our belongings. I take my meter out and preform the test BGL 5.9 mmol. I was ecstatic that the day had played out as it should. BGL 5.9 mmol

4pm - We headed home and I continued to test and the highest that I went to was 8.9 mmol. This I was happy with.

All in all I write this not to gloat and not to blow my own horn but to let people know that even though we have this disease and even though it takes management day in and day out we are able to push through and work out what is best for us. Being connected to the pump does not mean limitations it actually means greater amount of flexibility.  

One size fits all

This may be the case when we look at some hats, stretchy clothes and accessories however in the world of T1D nothing can be further from the truth. In the general public, through the media promoting a very general picture when it comes to T1D, T2 or even T1.5, it is believed that if you have Diabetes you have one not looked after yourself or your parents haven't provided  a healthy lifestyle when your a child. So in short the perception is that one size does fit all or even most.

What the general public do not realize is that there are so many things that are different to each and every T1D -

• The only one thing that is the same is that we all have a auto immune system that doesn't like out Beta insulin producing cells and we can either no longer create insulin or are on the way to that.

• How exercise effects us can be different. During and after the exercise some peoples adrenaline will cause the BSL to increase rapidly and then find that a drop in the actual BSL from the exercise will happen after the adrenaline subsides. Others have a drop during or straight after.

• Basal rates (the background insulin either with short acting insulin through a pump or long acting insulin on MDI) will be different. Mine change depending on the time of day. For some reason when my body rests is when I need the highest amount of basal insulin. Others such as my daughter have a very low rate over night and higher rates during the day.

• Food can have very big differences on everyone. A simple piece of bread can effect one person in one way and someone else completely different. Different times of the day is also able to see different insulin requirements for the carbohydrates eaten. Breakfast lunch and dinner are all different in my pump. 

• The way in which people are effected by highs and lows also vary greatly. Some people are highly susceptible to  DKA or dangerous lows without really knowing. Other people will know it is coming before it gets to a dangerous level. Some people become emotional with lows, some people get the shakes, some sweat heavily and there are many other possibility that are experienced however these are what I feel sometimes singularly and sometimes all together.

• Management methods are different also. Some people are happy with the management that MDI give them however there are others that have become fed up with the constant injections and move to the insulin infusion pump. As technology changes I am sure there will be more options with management so time will tell what other differences there will be.

Even though this list isn't complete as there are differences each and every day that show that One size does not fit all T1D's.

Making it a little easier

Some may say that there is nothing simple about dealing with life and then adding T1D ontop, others may take it in their stride and it just becomes of a part of who they are. But there is one thing that is certain when you get ill and you feel like the sickness is all cumbersome however T1D never takes a backseat.

My last post that was a while ago now saw sickness hit my family and take a large toll on my 3 y/o T1D daughter where a week in hospital was required. All is well now and she is strong and healthy however I reflect on how things have changed since I started living this life.

For about a week of two before my daughter shows any signs of sickness her body already starts fighting what is within because the first sign of sickness is her BSL rising rapidly. This means greater amount of monitoring and care however the over the easy part that we manage is the ability to adjust the temporary basal rates that we have on the pump. For the last sickness we engaged the temporary rates to 200% of her normal requirements but depending on what was happening throughout the day and what ever was going on in the body we would actively manage the rates varying from 50% (needing less insulin) to all the way to 200%. Yes is takes a lot of management, monitoring and changes but with a 3 y/o or even my self  as a veteran adult monitoring and positive adjustments are part and parcel of this life with T1D.

I thank the advances in technology for the ability to make changes to my daughters settings on the pump instead of having to make additional insulin shots just to keep her out of DKA. Even though with sickness my daughters Ketone levels rose we actively managed with the changes to the pump to keep her out of DKA. If we didn't have the pump we would have been in hospital for both the Flu (which took a big toll) and even more seriously the poisoning of ketones in her system. After 24 years of T1D I have only been in DKA once after diagnosis and unfortunately that was due to doctor error and sickness rather than  poor management and it is something that I do not plan on getting into ever again. It is a terrible place to be and the last time I was there I was basically in and out of a coma for days. My wife and I will do all we can to keep our daughter out of DKA and hopefully teach her all that she needs for the day where she has the full responsibility to manage everything herself.

The other part to the technology that was the difference between DKA and even just sanity for my wife and I was the CGM sensor that is connected to the pump. To be able to monitor the ups and downs and then make the necessary proactive changes takes a lot of the guess work out of doing what we do.

Anything to make things just a little easier, even if it was the simple change that allowed my BGL meter to talk directly to my pump, is welcome and we will continue to find things that can be added to our arsenal to make life choices easier.

CGM an updated post

Ok it has now been nearly 6 months of wearing a CGM. I know time fly's when your having fun. Anyhow I have experienced stress, illness, happiness, fun and hardship. I have worked, been on holiday and just been at home. All in all no matter the situation I see the CGM as a valuable piece of my arsenal in this battle with T1.

I have had insertions that have not gone right. For example when you hit a blood vessel and the fluids that the sensor uses to monitor levels are in short supply. The readings can be skewed or in 1 or 2 situations the sensor has had a failure however when it hits the right spot the sensor is in tune to what is happening. In recent months the sensors that I m using, Medtronic Enlite, have also been upgraded for performance as well as comfort. The actual surface size of the sensor component has been reduced and the delay between the blood level and the sensor level and once it is in I have had no problem with even knowing it is there. Other than every now and again catching the sensor on a piece of clothing but that also happens to my site sometimes and I quickly remember it is there and am more careful.

On the old sensor my daughter, who is quite fine in stature being 3 and all had some difficulty with finding the right spot. We had to find some tissue where the stores of fluid under the skin were stable. To tell you the truth we went through a number of sensors that either wouldn't begin or only lasted a day or so before they began alarming and failing. Since moving to the Medtronic Enlite advanced sensors we have had a lot more success. The sensors have been accurate and they have had no problem lasting the 6 days that they are active for. We have had some assurance and piece of mind over night knowing that if there is a unsuspected drop then the alarm will sound and we will be alerted before it becomes a problem.

In recent weeks including a weeks stay in hospital due to my 3 year old T1 catching influenza A, the CGM was invaluable. We could see when things were just not working and we were able to keep her out of DKA. Her ketones were out of control but we managed the fluid intake and the BSL level for as long as we could at home before we had to make the move to hospital. With the Flu and a viral eye infection she looked like hell but we kept her from what we would consider a night mare in DKA. Even when getting into hospital the doctors where surprised that we were able to maintain as we did for the time we did. We are thankful for the tools we have that are there to help each and every day.

Looking at the advancements in the last 23 years I now wonder what is next. I see articles trying to say that they are close to understanding why T1 happens and I see the trials of a artificial pancreas that will be able to administer both insulin and glucagon in small amounts to make sure levels are maintained. I see articles on all other types of pumps and thoughts on management such as inhaler medications and I am excited as to what is next. Working in the IT industry I see how quickly the world is changing and I know that the advancements that are to come will come thick and fast. There will be a option that will suit all of us and hopefully will make us even more successful I managing this disease.

When sickness hits!!!

This week continues to be one to forget. After a semi easy week our older 2 daughters arrived home from a trip to Fiji. I know nice, huh? It would have been until I got the phone call saying that they were home and heard the words that my oldest daughter had been vomiting within the last 12 hours.... To tell you the truth I and my wife began freaking out cause unlike a non T1 family we have the difficulty of managing the sickness along with the massive dangerous roller coaster that T1 can bring. To put it simply also was that our little T1DD who just got over a cold and in the 9 months of T1 D had never had a gastro bug..... I sit here now and I can no longer make that statement. I sit here after a day of vomiting, crying, stressing, arguing and T1 D trying to get out of control. Not a day I would recommend to anyone.

But to go back a step in this household seeing as there is 2 T1D's and 3 non D's you would hope that maybe the world would give us a break however that was not the case. I was the first to catch the bug. With sensor attached and the pump on my hip the sickness took hold. Vomiting and fever began and took hold for over a 24 hour period. Some liquids but no food over that time at all. It was at that moment that over the last few weeks I had been doing basal testing and working out my correct levels. I actually watched my levels stay level through this ordeal which was great to see. Another great benefit of being on the CGM, it meant that I could concentrate on the problem at hand and have confidence that I was not getting into trouble with my levels.

After nearly 2 days I am finally back onto solids and able to say that things are back on track....

Just as I did say that to myself the next episode began, our 3 year old T1 went down hill quickly. I got the call from my wife just after she was shopping to tell me that the gastro bug had hit again and that she had vomited everywhere. The problem was that, unlike my T1, her's was taking it hard. Her ketone level's rose from 0.1 to 2.2 and she refused any liquids or medication to try and help. I began coding my wife in sick day management which included the increase of insulin to try and flush the ketones and an effort to get some fluids in to try and keep dehydration at bay.

By the time we had gotten to the 2.2 ketone level we gave ourselves 1/2 an hour before we headed to the hospital. Luckily our daughter finally took some panadol to try to get the fever to drop and she started to get some colour back in her face. We continued to check he BGL and ketone level and the were down to 8.6 and 0.9 respectively. Now this was not an easy feat as each time we wanted our daughter to drink some liquids it meant an argument and ultimately some sort of bribery but we have had sips every 5 to 10 mins. I know probably not enough but it is doing something to bring the levels into check.

Unfortunately as mine lasted for over 24 hours it is not going to be a restful night for mum and dad as we need to continue the fight while our baby tries to get some sleep and allow her body to rest.

I congratulate my wife in her first serious bout of gastro and her management. She has been tough when needed to be and loving and understanding for the rest.

This battle with T1D is never welcome and never pleasant and all we can do is manage the best we know how. If we falter then we know there is help with the doctors but for now we try and try our hardest.

Fears

One of the first things my endo ever told me when considering the pump is that "The pump is not a cure! It is a management technique and if abused it can be dangerous as things can change quickly." I sit here now and wonder whether or not the rigorous and strict beginning was a blessing in disguise.

To this day I still try to live the diabetic lifestyle and diet (Before there are comments I know there is no such thing as it should be moderation and nothing in excess and I suppose that is what I mean). I steer clear of normal soft drinks like it is poison. I limit any sweets so that it doesn't blow out my BGL. The only reason I look at this is because I see how my daughter, who has been on a pump since day 2, has to an extent continued with her life as it was. I argue with my wife cause to me if we are able to put some rigor in place now it will make the journey later in life easier. I look and wonder if in 20 years will she have the knowledge to make the right decisions to make sure she steers clear of complications.

Within this world of expanding choices and accessibility to anything I fear that if my daughter doesn't understand limits then her journey will be made up of difficult experiences. On the flip side also life is there to be lived and sometimes making the wrong decisions is what makes you learn the best. So maybe it is a mixture of giving the foundation of what the right choices should be while knowing that every now and again the bad choices will prevail and as long as they are choices that are learn't from then this is ok.

After living completely inside this battle for over 2 decades and now within a side battle of MS the biggest thing I have to learn is to understand what it is like for my little baby to grow up with this and not know any different. I was 10 when I was diagnosed so do have memories of what it was like without it but she will never know the difference. I have to understand that she will one day understand why we have had to do so much for and too her. All I want as we all do is for her to have the best future she can have. This will mean structure and processes and also a whole lot of time where life comes first (of course with T1 along for the ride).

She will be taught at the minute that the pump is only a management tool and that it is something to be respected and used within guidelines so that the dangerous part is kept at bay.

To pump or not to pump? Things to consider....

Any milestone in this life with T1D, whether it is the first test or injection or just the first time you try something new and you calculate your diabetes to perfection, is a feat to behold. In this age one of the biggest management changes that can be made is to choose whether or not you start pumping or stay on MDI.

As with all big decisions there are positive and negative aspects that need to be considered. But with every decision there is always a balance between the 2 and hopefully with sound judgement the right decision is made.

I have spoken in part of my decision about pumping and even the decision to have my 2 year old daughter on a pump but I suppose I haven't gone through the consideration process.

First to consider is what stage are you at -

• Are you a long standing or well experienced T1D and you have been giving so many injections over the years that your tired of the routine, the feeling of being a pin cushion, the inflexibility and to a degree the blindness that can come with MDI?
• Are you a long standing or well experienced T1D with control and a view to maintain the control and avoid complications well into the future?
• Are you new to T1D and looking for a management method that will be as like to normal function?
• Are you a parent trying to work out what is going to suit your little one the best to ensure that they can minimise the risk of complications?

For me some 8 years ago I was 16 years in to my journey. I was living on 5 injections a day and calculating my food intake by exchanges. I was a slave to feeding my insulin rather than have my insulin to what my body requires. I was tired of the needles, I was tired of managing my intake by knowing what I had to have hours before hand so that I could have my insulin 30 minutes prior to eating.

All of the above stages have elements to them that will have a dramatic effect on what decision will be made.

As with all methods of controlling T1D pumping can in fact be a method that can be stable and also have quick change if not paid attention to. By using short acting insulin only, you can have something go wrong and  it can change your BSL in minutes. This is not to say that on MDI with a long acting insulin this won't happen and to tell you the truth the worst hypo's that I have had is when I was on MDI with a long acting insulin. I suppose that with the short acting insulin you can make changes and have them applied within minutes and hours rather than days.

If you have gotten to this point and you think pumping, which is the most advanced method of T1D management, is something that should be considered (which I completely agree with) then you need to take the following into account -

• What type of pumps are there? Well in our market there are 3 on the market that can be prescribed. All of which do the same basic job however, and this is where you need to do the research and understand about the support and company behind them. A pump is only as good as the support that goes along with them. Do not expect that each of the companies are the same. Do your homework.
• What functions do you and your health team think are important? Is it small dosage ability for your basal rates, is it the ability to connect a CGM to the pump to help with a little bit of automation and reassurance through out the day or is it a combination of all the little things that make up the pump.
• How do you work with your Team? Do you wait until your 3 monthly appointment before you review your BSL's and rates or do you expect the information to be available to you and your team no matter the day or even where you are in the world. For me this is a big thing, I download my pump and that data is available for my team to review whether I am there with them or I am in the other side if the world. This allows me the speak to my team and tweak my settings to ensure a maintainable range is kept.
• Is it more about the aesthetics? Can you read the screen, can you navigate through the screens in an easy manner and would it be in user friendly terminology?
• Does your endocrinologist have a vested interest in understanding how your pump can work for you to ensure your life immediately and in the future will be better. Even though I was on a Medtronic pump for nearly 8 years prior to my daughter being diagnosed and knowing that I wanted her on a pump I still asked her medical team for their professional opinion on what they thought was best. Of course I could have argued with them if they didn't agree me as to the best but that wasn't to happen.
• Is it a concern that you will have a device attached to you 24 hours a day, 7 days a week? Well this is an interesting question as there are many like situations. My wife is not a T1D however she has a device that I would say is attached to her 24x7 and is rarely more than a meter away from her. The difference is that I think she can live with out her phone compared to me not living with out my pump. It is a change to have a device attached however the pro's quickly outweigh the con's and within days you live like it isn't there. My daughter, since seeing me with mine her whole life never second guessed her pump and to her now it is normal.
• Can you teach old dogs new tricks? It's never too late to make a change and if you have gotten through 10's of years on MDI and have little to no complications then pumping could be a management style to get you through the next 10's of years minimising the possibility through hard work of complications.
• The pump is not a cure! This was one of the first things my endo told me. It is a management tool that if abused can be dangerousness but used in the purpose of why it was made, have awareness of your body and have the drive to always want the best for yourself and the pump will be a shimmer of normality back in your life.

For me and my daughter the pump has been a welcome addition to life. It has put flexibility and control back in our hands. It was the best decision I could have ever made in my years so far as a T1D. I understand that people could be adverse to the change but if there is an incling that any one point above has made you think then at least ask the question and investigate. Do not be afraid to make a change for the good.

The day it all began - Diaversary

Today I have mixed and strange feelings, I wonder to myself whether or not I need to be happy, excited or angry and confused. Today is the eve of what many call their "Diaversary". This is the first time in 24 years, and it is because I am a lot more thoughtful since my daughters diagnosis, that I have been able to sit back and recognise the day that it happened some 23 years and 364 days ago.

Is it something you celebrate? Is it something like a birthday? Or is a time to reflect on what has been done and what will be done?

For me I think it is the later, reflect on achievements made through the years, celebrate that life still comes first and that T1 has not caused major problems. Celebrate on the advancements in management and the ability I have had to change to make my life better.

Before 1921 there was no management, there was no insulin to keep us alive. Now that may seem like a long time ago however I then put it in perspective with the people around me. My grandmother was roughly born around the same time that insulin was found. My grandmother is still alive now and to me I would say that modern management of T1D has been available for only 2 generations. I don't know about you but that doesn't seem like a long time to me at all.

Then to think of the advancements from glass syringes to disposable syringes, no blood test equipment to machines that take 5 seconds to give you an accurate reading, urine base ketone tests to once again blood machines to calculate ketones and probably the biggest change is the modern day insulin pumps and CGM sensors. I saw a photo a photo the other day of the first insulin pump and it resembled a ghost busters back pack. To think we have moved from that to a small pager device that has the ability to mimic the natural body's insulin production. This I am thankful for. Not only for me but most for my daughter. If I can maintain tight control then maybe just maybe she can also learn to keep any complications at bay.

Now that we have looked behind us now it is time to get excited of what could be in front. If in 93 years we can go from death to having the ability to manage this disease with a little pager then what is coming at us in the near future. With the rapid advancement of technology I would have to say that the next breakthrough in management is only around the corner. Whether it is a full blown artificial pancreas that is able to determine the BSL and then give either insulin or glucagon to keep it in range or if there are elements of automated predictability then anything is welcome. Anything that will help maintain levels to keep the other hidden complications at bay is always going to be welcome at my door.

So in reflection of this post tomorrow is my "Diaversary" and I will celebrate who I am and what I have become with T1D on my side and look toward tomorrow for things that will make the next 24 years as successful as the last.

Personal training begins

A few months ago I wrote an entry on trying to loose weight and how when eating the right portions and exercising  alone was difficult and scary in the point that the unexpected lows and the management of insulin levels as your body needs less was and is difficult. You never want the low to hit in the middle of the night that is for sure.

As this is the case I decided that this time I will try a different tactic and use a personal trainer. It was also timely that I saw online that there was a personal trainer who was looking to make the next step and become a personal trainer that is qualified to train people with critical diseases or problems such as T1. To me I didn't even know this existed so I thought it should be interesting to see what they know and what they could do differently.

On MDI I lost 30 odd Kilograms at one point and in doing so I had some of the worst hypo's I have ever had. One day would be fine the next would be the body saying your now loosing weight so you don't need so much insulin. To which case I would adjust what I was having but where I would try and preempt it I would run high and just feel terrible. It was great to loose weight but it was a scary time.

Now on a pump with a CGM sensor it is very interesting to see the impact of what I am going to put myself through.

I get to the gym on my first session dreading what was to come and I get the information that we are going to want to work out to bun fat and not glucose. I had never really thought of this before, and probably it was just naive  of me, but to do this it meant we would work on the large mussel groups with heavy weights with high repetition. As I like to think that the people who are the specialists in their profession know what is best I did the work out.

The weight section of the work out consisted of dead lifts, squats, squat jumps and bench press. The cardio section, even though it was a very small fast bursts, was done on a rope pull machine. Like short sprints it was 2 minutes of fast paced repetition.

By the end of the sprints it was then onto the treadmill for a cool down walk to ensure my heart rate lowered. I can safely say that by this stage I felt like vomiting from the lactic acid flowing through my limbs and it felt like my legs were jelly.  It was a hell of a work out.

Now the interesting part. Usually when I do a cardio workout my BSL will rise and the 2 or so hours later it will drop dramatically. Through out my workout and because I was wearing my Medtronic CGM I was able to monitor what was happening and anytime through the hour. I was shocked to see that through out the hour my BSL remained roughly the same. I had no rise and even more importantly I had no major drop even hours after. I was amazed and I felt great.

I have continued to work out and wear my CGM and I have had consistent results. Heavy weights with high repetition saw stable BSL. There had been a number sessions since where we incorporated sprints on the bike along with the rope pull machine in the one session. As this was multiple cardio elements I did notice on my CGM hours after the workouts the drops in BSL occurred.

Moving forward there is a fine line between burning fat instead of glucose but if nothing else I have another element to use in the war with T1D and how I can just manage what I can to get the results I need.

Another's perspective ##Guest Writer##

Today I have asked for my wife's  views on living with 2 T1D's. Her perspective from living just with me compared to now that she has a daughter with it and the responsibility to keep her alive is ours.

I knew Gareth for years before we got together. I at first did not even know he has T1d. It was only when on one night I was babysitting Ella and Lucy (his daughters from a previous marriage) when I noticed these strange vial things in his fridge. On closer inspection I found that they were insulin and that the strange thing he wore on his pants was in fact not a pager after all! My first experience with his T1d was a few weeks after we got together. He always managed his diabetes on his own, never really discussed it, he just did it. But on this one occasion, gareth got gastro. He turned not only into the exorcist but a zombie. He was passing out and in between consciousness, he told me he needed sugar and quick! I remember running down the stairs and grabbing cordial as I knew he couldn't stomach anything solid so I would give this a go. It went down and it came straight back up. I was terrified and even though he mumbled he didn't want to go to hospital, I managed to limp him to the car and to emergency. Which luckily, was a 2 minute drive away. I knew nothing of the glucagon injection, nothing. It was frightening and luckily never happened again. Gareth continued to look after his diabetes himself and was always well controlled so very rarely ever needed my help except for grabbing the jelly beans every now and then or by me telling him his breath smelt sweet, could he be high?
When I fell pregnant with Shiloh I think I may have thought about her getting T1d once, maybe twice. Gareth was the only one in his family with it, and Ella and Lucy didn't have it so why would my baby get it, right?
Shiloh came into the world in a less than glamouros way. She was stuck, and even though she was only 2cm away, cutting, forceps and vacuum failed. So she was born by emergency c-section after both our hearts were not beating correctly. She was a happy baby but earned her frequent flyer points at the doctors. She first got severe jaundice. The doctors said this was from the trauma to her head at birth (forceps and vacuum). She then got a very rare eye infection which took a lot to treat and was again caused by birth. At 3 weeks old I noticed her stools resembled that of a lactose intolerant. I worked in child care for many years so knew what it looked like. The doctors kept brushing it off. Kept saying it was colic. But her pain got worse. From birth she very rarely slept. As a newborn she would sleep 20 minutes and sometimes that was for the whole day. At night she would wake every half hour. Shiloh also got terrible eczema. I put her on soy formula and the pains stopped. Finally the doctors agreed that she was lactose intollerant. However the sleeping pattern continued, the eczema slowly improved. Shiloh also suffered a lot from colds, ear infections. So much that this helped us to decide to move to sunny Queensland. Where in fact her health improved until she was 2 and a half years old.
At the end of August 2013, I noticed that shiloh's eyes were more darker than usual (she always was a little darker under the eyes) she was grizzly, hard to reason with and her appetite which usually resembled that of a sparrow, increased dramatically. So did all the cups of water she was scoffing. I mentioned this to family and friends, as by now T1d was slightly in the back of my mind. They all said she was probably growing which I agreed once I had spoken to gareth and he thought the same thing. I now know he did not want to believe it was T1d and found it easier to pretend it was something different. However, on September 4th we went out shopping and to lunch with my sister in law who had just flown in from Melbourne. Shiloh was sweaty and demanding more and more drinks of water. I mentioned t1d to gareth at lunch. Who agreed to test her once we got home. By then the wet nappies had started. Every 10 minutes we were going through a saturated nappy!! I held her while he tested her. And we got the answer we were dreading, "HI".
The look on Gareth's face said it all. He rushed to wash her hands and re test while I sat staring at the floor. All I could think was "no it can't be, she must have sugar on her fingers" but the re test was again read, "HI".
We rushed to our GP, just in case our tester was broken. Please god let the tester be broken. The doctor looked at us and she said "rush her straight to emergency, I think you are right. I think she is type 1". We cried all the way to the royal children's. I sat in the back with my little girl. Holding her hand, kissing her, telling her she would be ok. It would all be ok. And all she did was wipe my tears away and tell me not to cry. My heart was beyond broken. Here was my little girl, sick, exhausted, feeling so poorly but all she cared about was me and her daddy crying. And I swore right then, that I would fight this disease with my last breath. I stopped crying, I would not let it break me today or any other day! We walked into the hospital while we all held her down so they could take blood and put a drip in. She was so upset she slapped my face and I wanted to break down, I wanted to scream and cry, but I didn't. I had to stay strong in front of her and I did. I was her warrior now. She had to see my brave face. The doctors confirmed what we had already accepted. Our beautiful baby had T1d. An autoimmune disease that she would have forever unless a cure was found. I remember smiling and telling her she was just like daddy and then I would go to the toilets and sit on the floor, rocking and crying.
The injections were the hardest. We had an amazing diabetic educator, Karen shann, who to this day remains our saving grace. But the injections for a fussy eating toddler were crazy. She would get hungry but could not eat anything else as she had already eaten her max carb ratio until the next injection. She would want a bottle of milk before bed but the nurses would say no. Shiloh always had milk to go to sleep!!! This created so much more stress and on the 2 nd day of diagnosis, Karen worked with the wonderful people at Medtronic and Shiloh got an insulin pump! God bless the pump!! Shiloh took to the pump like a pro. She matched her daddy and she was happy.
I noticed too that as soon as Shiloh had insulin, she instantly looked better than she did in a long time. She also slept all night!!!! Which she never ever did before diagnosis. She was also not as angry as she used to be and so much happier in herself. We have often discussed with our diabetic team that perhaps, Shiloh was pre diabetic. And I believe this to be the case. What other kid would fail sleep school?
Shiloh has excepted T1d better than all of us, including the doctors, could ever have imagined.
But have I?
Well.......... I soldiered on. At first I tested her 15-20 times a day. I panicked at every moment.  It was mummy against this T1d during the day by herself while daddy works. I had, and still do, have so much to learn. It's never ending learning with T1d. But i learnt to ease up. and I stay strong, but there are those days. Those days Shiloh gets too high and I blame myself for not bolusing enough. For giving her that treat. It's my fault. MY FAULT.
It's my fault Shiloh went to low. I over corrected. God I could have killed her!
Its my fault she cries at set chances. It should have been me! give this disease to me, not my little baby!!!! I understood for the first time, what Gareth was dealing with. somedays my mind just cant take anymore information or frustration and i just snap!!
Most nights I admit, I wake in the early hours and as Shiloh has slept with us since diagnosis (a mummy coping mechanism) I rest with my hand on her belly to make sure she is breathing. I then watch for Gareth's breath for now I have the understanding I also have the fear of what can happen to him as well.
Sometimes I cry. I cry alot. For all the difficulties my little girl is going to have to face with T1d.
Kindergarten, school, sports, illnesses, health problems etc. and what will happen when it's no longer up to mummy and daddy to keep her alive? When she is responsible for it herself? Will she rebel against it? Oh god, the thought of this brings many tears now. And as I write this, in the bath on this cold Sunday evening I can hear her begging and crying to her dad for no 1,2,3 (this is what she calls set changes). And my heart cries for our beautiful, strong, baby girl.
But then I think, that's just it!! Shiloh is strong!!! She is healthy besides her pancreas. My little girl is a force to be reckond with. And she learnt from us. Her warriors! We will fight T1d until our last breaths. Together we will not let this beat us!!!

Diabetes Burnout!

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.

I have talked of this before but today I see the other side, I see a burnout from a carer of a type one toddler and me a T1 adult. It has only been 9 months that my wife 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 head in managing what has to happen. In one way removing some of the emotion if you like.

My wife has 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 a a mother. 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 wife who is 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 wife 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 what we put into each and every day.

I give thanks that my wife has been so accepting of not only her babies new life but has now also understood what I have been doing for so many years behind closed doors if you like. 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. Now that we progress down this road she is applying what she has learnt on me also. For example last night, during an episode of extreme tiredness from my MS, I groggily woke up to her pricking my finger to see why my pump was beeping at me. She subsequently found I was down to around 4 so she shoved some sugar into my mouth and made me wake up enough to know what was happening. This isn't something I have asked of her she has done it out of awareness and care and I love her for it.

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 aknowledge 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.

Are highs and lows all the same?

For me the simple answer is no. For example a high from not having enough insulin, so under bolusing, is completely different to having no insulin at all and going high. I sit here this morning after having a BSL rise gradually the night before due to a poor insertion site. It was one of the ones that when you take the cannula out it bleeds for at least 5 minutes but I was lucky that it didn't squirt all over the poor like the last one of these. Basically this is just putting a stop to the insulin observing into the body through the normal tissue. As it was a gradual rise I was still getting some but not all that I needed. After a manual injection and changing the line and site I steadily watched the BSL lower to an acceptable range and so off to bed I went.

What I didn't know was that the new line I inserted had an even worse fault. Where the line connects to the cannula site, where you disconnect for showering or swimming, was loose. Usually it locks into place softly so that the connection for the insulin to flow through is secure. What must have happened is that when I first inserted everything was in alignment but then while in bed and as I moved the alignment was moved hence the starvation of insulin. Waking up and having no insulin for 4 hours is hell for me. My heart is racing, I have laboured breathing as it actually hurts my lungs, every muscle in my body is cramping and my blood feels like mud. This is what I call waking up on the wrong side of the bed.

Luckily I caught it and my BSL is only 14.6 and my eye sight isn't effected. A 14.6 for over eating I would have the thick blood but I wouldn't have the heart racing, laboured breathing and the muscle cramps. Don't get me wrong both feel like crap and I never want them but being with out insulin for me now is an impossibility. Someone asked me the other day how long I think I would last if I didn't have insulin and sitting here right now feeling the way I do I would think after 12 hours at a maximum I would be in a serious state in hospital. It is scary to think that a small amount of a hormone that the majority of the world takes for granted keeps us alive and we have a dependence that causes us to be in serious trouble in only hours of not having it.

I find it the same for lows. There are lows for excercise and there are lows for too much insulin. Whether it is a basal rate that is too high or you have over shot on a Bolus shot then they have too different feelings attached to them. Excercise lows I can deal with because I suppose you are not overdosing on insulin your just using your stores of glucose and energy which need to be replenished. A low from over dose sees there being too much insulin on board and it looking for what ever it can to do its job.

So to answer my first question for me not all highs and lows are the same. Different scenarios will have different reactions and when it comes down to it different emotional responses. Just because we need more to take into the day.

Being 7,182 miles away from safety!!!

To many going on holiday is the most joyous time where all the hard life decisions, day to day burdens and just normal life can be almost forgotten and you can live how you would like with out a care in the world. In most part this is still correct except for one large part.for my daughter and I. It is currently 9.55pm in the Anaheim area USA, some 7,182 miles away from the comfort of home. After a day in Disneyland I sit here reflecting on the number of challenges we were faced with just because we did something a little different.

The day started with pulling together the supplies for the day including testers, strips, pumps, hypo food, back up needles just in case the pump failed, and of course the extreme hypo measure of the glucagon shot. Now this isn't necessarily any different to any other day other than the face that we are out of the comfort zone and our team and general process for supplies and doctors are not at an easy reach.

Yes we are in a large modern country and the majority of what we use to keep us alive probably originates from companies here but what we also know is that every country has its own medical system and when you do not know the ins and outs the fear of "if something goes wrong" is daunting. What happens if the pump fails. How long will it take to replace. What happens if we get sick who do we call or where is the hospital. Things can change rapidly and knowing that is just the start of the worry.

I have spent multiple days adjusting settings on both my and my daughters pumps to try and counteract hypos or highs that were becoming present over numberouse consistent days. Tweaking to make sure that health is maintained so that we can enjoy our trip. Today for instance I had dropped back my daughters basal rates as she was constantly going low. I did this slightly and now I drop it again just a little as it still was not quite enough. If it had been a one off I would use the temp basal rate so that when things went back to normal, or less exciting it would fix itself however as these hypos were appearing over multiple days and during periods away from food intake and over various settings (such as Disneyland one day and driving the next) I am adjusting the basal on the current pattern she is on. It could very well be the end of a growth spurt that started a week before going away which saw an increase of basal by an average of 170% across a 24 hour period however I need a few more days to drop it right back.

My levels on the other hand have needed increasing in some areas and decreasing in others. I think the out of the normal routine, and it really does become evident of the routine you get yourself into when you get out, has had this effect. Eating different foods, having different strains on my body and just being in a different environment causes variousness changes in the body that will have an effect.

In no way am I ever going to stop traveling but I suppose what I want to share is no matter how much we may want to step out side of T1 and go on a holiday the same pleasures, problems, calculations and considerations will follow and yes I am tired but it needs to be taken into account even on the other side of the world because if something goes wrong here then I have to rely on strangers to ensure everything can be put on track.

CGM - my experience thus far

Over the years I have had a few chances to have a single sensor for CGM just so that I could fine tune my pump settings. Each time it has given me valuable insight and the ability for change but as they were just a trial then there was no real focus on what benefit it could bring if it was there permanently.

Now things have changed.... I have a full years supply of CGM sensors and I plan to get the most out of them. Now I am 3 weeks in and have had a sensor in everyday over that period. In the beginning it was very similar to the trial ones where I didn't see the benefit however once I truly realised that it was here and here to stay I opened my mind to what it could do.

Having the ability to confirm my body feelings is the first advantage to knowing your own body. I have able to show my self that the rapid rise or fall of the BSL would give me different feelings than when it just rises or drops slowly. Being able to look down at my pump and see a single or double arrow is the confirmation that I need to pay attention to what is going on. Have I eaten something and my insulin to carb ratios need tweaking, have I just done exercise and may need a temporary basal rate, am I under pressure and stress or is it just that my basal rate is off. All things that I can think about proactively with the sensor on where as before there would be a reactive element.

The chance to watch the slow rises and falls helps to manage good ranges. I can have little tweaks of insulin to ensure I can cut off the rise or I can have some small carbs to cut off a hypo. I know for me this equates to peace of mind for me and my family.

Please don't get me wrong I do not spend my day sitting there watching my pump now. I sort of wish sometimes that I wasn't so busy and I could but for me life always comes first. With saying that the alarm feature has helped me a number of times. I was in a meeting just the other day concentrating of forcasts and business news of the day. When in this mode I tend to turn off from my T1 so I can concentrate fully. I was feeling fine but all of a sudden I heard an alarm coming from my waist band and as I looked down it was an alarm telling me that my BSL had reached 2.3. Knowing that this had happened I quickly was able to excuse myself and test my blood for assureity and it wasn't quite as low as 2.3 but it was down to the low 3's and I needed to rectify it. I quickly had some glucose and was on my way moments later. With out the alarm I would have been in the dark until I finished my meeting and I took stock of what was going on. In the worst case scenario it could have dropped further and gone into a full blown hypo and I just don't want that at work ever.

Ok having another item stuck to you does take a little bit to get used to but what I can tell you the transmitter is a hell of a lot smaller and lighter than they used to be. Finding spots around the abdominal area, after 8 years of pumping does sometimes have its limits but I still have plenty of room. Sometimes when the pump site needs to change to the opposite side to where the transmitter is can be slightly annoying but thank god for the longer tube lines so that I am able to still wear the pump close to the sensor. Some times if you don't the connection becomes weakened. Not that it is a real big problem cause even if the sensor looses connection there is memory to hold up to 30 mins of data that it will download upon reconnection.

As with the pump, and anything else in life there are pros and cons. When starting the pump the large con for many is having something connected to them 24x7 is daunting and in some cases a reason not to choose pump therapy. However for me, just like the pump the pros out way the cons ten fold. The control, stability and awareness that the CGM brings adds an extra element to the battle that T1D can be. It allows you a sense of strength through knowledge and to get that in real time is great.

Now onto the difficult subject - the cost. To me this is still a luxury item. Once this 12 months is up I don't think it will be in my financial means to continue and for something that ultimately keep T1D's out of the hospital system it is something that should have some recognition of benefit from our governments or health insurance providers.

This is only the start because in the coming weeks I plan to put my 3 year old daughters sensor on and give you my feelings and thought on how it helps me to manage her and her levels. But at the minute I am letting her see it on me for a few weeks so that when I try to put it on her it just seems normal. If there any such thing in this T1D life.

What is worse!

Please don't think that I have a mis belief that T1D is the worst thing out there because I know it is far from it and people do suffer a great deal more however having a critical disease that you live with every second of every day is a big thing to deal with.

If I had a dollar for every person that told me (including my family) that it could be worse at least you don't have cancer. Well I have come across this situation recently with my mother being diagnosed with cancer. Every case is different but in this instance I have been met with mixed emotions. In one way I was devastated and concerned with the health and well being of my mum. We went through the action plan, and yes there were some drastic measures to address the cancer. In this case we were lucky because the cancer was caught early and with some surgery the cancer was gone and the further drastic measure of chemo was not going to be needed. So all in all a great result for something that can be a death sentence at times.

Now on the flip side. This may seem selfish but after living with T1D for 24 years and now having MS I could not stop myself from thinking that I wish I could have a day in hospital for an operation so I could live normally again. So I didn't have to calculate everything, everyday. So that I could go for a run without worry of a hypo. Of course this was a feeling that quickly past but I suppose it just put it into perspective that sometimes for a person that is living with a incurible disease there isn't anything worse in that second.

Why I have my toddler on a pump

This is going to be a very easy post and if you follow the link you get to see the man behind this blog. Head to

www.t1dpump.com.au 

And click on the newly diagnosed video and enjoy.

Traveling with T1D

Traveling at the best of times is exciting, fun and complicated all at the same time. Especially when going overseas you need to arrange tickets, accommodation, things to do and see and insurance just to name a small portion. What adds a great amount of complexity to this is traveling with 2 T1D's.

When nearly away for 3 weeks on the other side of the world I am predicting on a suitcase just for T1D supplies. I will need my lines and resivoirs for my pump, my insulin, my test strips to last the whole trip, my BGL meter, my spare BGL meter with spare test strips. Now that isn't it for me but now multiply these things out for my daughter. She will need even more lines and resivoirs (different to mine), her insulin, her test strips to last the whole trip, her meter, a debate on whether 1 spare meter or 2 is sufficient, oh and maybe some more test strips.

The items mentioned above are just the staples, next you need to think of all the worst case scenario's. Possibilities include -
1. Pump failure - luckily I have a spare old pump which is still in working order so for this to be used existing pump settings need to be both stored manually and electronically on the Medtronic site (user name and passwords need to be remembered).

2. A secondary plan if spare pump fails. This includes syringes and novo pens along with short acting insulin and long acting insulin. For us that is Novorapid and levimer. As with the spare pump we will still require the manual settings so that we can calculate the shots needed with food and the longer acting shots morning and night. We do the long acting broken down into the shorter time frames as we would be unsure of when a replacement pump will arrive and when it does we would want to connect again ASAP.

3. To split our supplies. If we are to put all supplies in the checking luggage and the bag goes missing then all hell would break loose. So the general plan is to take half on board and half in the check in. This ensures if the bag does go missing we would have enough supplies to get us through until the bag is found.

4. Sickness - this would have to be one of the biggest fears about going overseas with T1D. Luckily we are going to a first world country and we have taken out full unlimited insurance but to tell you he truth with a T1D that is only nearly 3y/o there are some countries I would bypass. If it was just me I could manage anywhere but the uncertainty of a 3 y/o not being able to express what is wrong is a problem. Any way things to take for sickness, ketone strips, back up ketone urine strips, clear identification stating medication and condition, if possible some hydro lite sachets (even if it is only 1or 2 it will help) and just a good plan of attack if sickness does come.

5. Try to know what is around in the area that we are going. For example shopping malls, supermarkets, shops and hospitals. If we end up in an emergency I need to know where to get things or where to get help.

6. Hypo treatments. Even though this point is an everyday plan it needs to be heightened as emotions and excitement could play a part in the unknown part of T1D. Take more than we think we need.

7. Hyper treatments. Other than insulin and water there isn't much else but we do have to take into account the extra insulin just in case.

Ok now that we have gone through and packed our T1D supplies now I suppose we need to pack the normal stuff everyone packs like clothes, toiletries and such. I tell you what the supplies that will be with us will more than likely take up enough room to fill 1 suit case or near enough to. I wonder if airlines would take that I to account. I guess not but I always like to see there faces at the airport when they see a full bag of needles and supplies go through the scanner.

Resetting T1D

A day with T1D can be exciting, tiring, confusing, complicated and simple. You can have all the luck in the world or you can just be down right unlucky. Even though you can work at trying to make things perfect it can go all wrong with a simple miscalculation. Some days you will get to the end and just wish it would stop and go away.

As we all know getting it to go away is impossible but with a mindset it is possible to reset your T1D so that you start with a clean slate. Well I can anyway, if this helps for anyone else then that is great.

Some days I will eat too much stuff that will have adverse effects on my BSL, some days the stress of life takes hold and effects my BSL, some days things are just out of control and some days are great but the one thing that I tell myself is that there is one constant and that is the fact that at night I will go to sleep and not have any food intake for at least 6-8 hours. Being on my Medtronic pump this allows anything that I have eaten or done in the previous day to be utilised in my system. It means that the only insulin onboard is my basal rate. There is nothing else that is having an effect. 

I may wake up high from what had happened the day before but the simplistic approach of not having anything else in my system usually means the correction works quickly to bring be back into line for a fresh start. It will be similar if I wake low. I know that there isn't anything else that will need to balculated into the glucose correction just the simple process of having it come back up to start again. Don't get me wrong though things can still go wrong by overdoing the correction but that just comes down to self control.

So all in all this is what I tell myself or allowing myself the ability to reset my T1D. It allows me to put aside everything that happened the day before and only focus on what is to come. Mistakes will still be made or bad days will happen but I will always know the next morning I can start again.

A passion is found

I know I have only been writing this blog for 6 months but it has ignited something inside me to want to help spread the awareness of what T1D is, what it is like to look after a small child with it and to try and let people know they are not alone. I find myself at the end of the day looking through out my experiences to understand what's next.

Through this blog I have now reached at least one person in over 20 countries around the world. Seeing as one of my main reasons for creating this blog was to try and make sure at least one other person didn't feel as alone as I did growing up I think I have over exceeded my goal. This has ignited a fire within me to continue to help.

From this blog, and a little marketing on my behalf I have spawned 2 other opportunities -

1. Addressing the Diabetic Educators of Queensland on the benefit of technology through blogging in my life with T1D. In other words what has it allowed me to do personally and how it has allowed me to reach others in the same situation as me. Hopefully I will be able to express to the educators how important it is for all T1D's to have communication with other T1's and maybe get my blog out to more T1's who may want to know they are not alone.

2. This is the big one. After having my blog read by the team in at Medtronic my daughter and I have been accepted in the advocacy program. Seeing as moving to my pump some 8 years ago changed everything and is still something that I am great full for it is a great pleasure to share my stories and experiences to a wider audience. I believe that the government needs to be able to recognise that insulin pump and CGM therapy is critical to long term health benefits and cost savings for the government in the long term.

My advocacy started on Friday with a morning of interviews, filming, photo's and meeting a great team of passionate people. They are passionate about people's health and passionate about making a difference to people's lives. I look forward to this journey and will keep you informed as more opportunities pop up.

To anyone that has taken the time to read my humble words I thank you and I hope that I have either helped you know that your not alone or shed some light as to what your child may be feeling but unable to express yet.

If there is ever a subject that you would like to hear about please let me know by commenting on my Facebook or on these posts.

I thank you again for allowing me to find something that I get fulfilment out of.

Just when you thought you had covered everything....

With a life of T1D you count everything, you monitor your BSL, you monitor and counteract the impact your excercise has, you make sure that anything you do or don't do doesn't have a negative impact. Now along with everyday tasks this would seem like enough but it isn't.

Tonight after a well controlled day for both myself and my daughter I proceeded to test her prior to her final bottle before bed. I went through the usual process of making sure her figure was clean and entered the BSL strip into the meter to activate it to the point it would ask for the blood to be added to the strip. Unfortunately this is where things became problamatic. The meter would no longer identify the test strip and hence would not turn on.

I could activate the meter manually however this just proves the battery wasn't dead and it only allows you to check the memory which in this case was useless to me.

Now as usual you always have a backup meter or 2 which I do have however the one thing that I hadn't counted on was the test strips in both of my backup meters being expired. In this case we were using the Accu Check mobile meters as the backup and not really considering that the strips would have an expiry date I thought everything would be fine however I was wrong again.

Keeping in mind all of this happened at 6.30 pm on a Saturday night (no chemists open). I had a back up back, back up plan which if everything else fails then we would both share my meter however I needed to check one last thing. Upon driving to the chemist to triple check I noticed that it was closed however there seemed to be a staff meeting going on. Sitting out the front of the chemist I decided to call them to see if anyone would actually answer. Luck was on my side as they did answer and the allowed me to come in to get some supplies. With the advancement of the technology in the mobile meter with having the cartridge strips rather than the individual strips was something I hadn't experienced before. Time to stick with the individual strips as a back up.

I suppose the moral of today's story is to make sure everything is checked on a regular basis and have back ups for your back up plans. Today I was lucky however another day I may not be.

CGM - tune up for my pump

Everyone would be aware of the ability to have your blood glucose monitored continuously through a sensor that sits under the skin and a transmitter that sends the readings over to the receiver. Either a stand alone device or in my case to the Medtronic insulin pump. The benefit to using it with the latest model pump is the ability to shut the pump off automatically if the blood sugar drops below the set level. I don't know about you but that ability is a piece of mind especially during those night time periods when you want certainty while asleep.

This technology is massive step forward however with big steps forward there is a price tag. Unfortunately for as long as my government do not see it as a necessity then it stays as a luxury item for me.

One of the great opportunities that I have had is to have access to a transmitter, on loan, and one sensor for the 6 day period. Where we have the ability to manually adjust our settings on the pump the access to the CGM allows for a detailed view of trends and and proof of areas that need changing, or even adding.

As we know T1D has the ability to change or do different things even if everything everything you do is the same. It had been roughly 3 years since my access to a sensor and to tell you the truth I had made changes where necessary and things were going well. Unfortunately stress was an unknown factor in my life along with new medication for MS so I had the chance to get a sensor to get a detailed view of what was happening.

The chance to see my rises, falls and steadiness in real time  was reassuring and scary all at the same time. Reassuring because I was able to see what was happening at any given time and the ability to set alarms for rapid rises and drops would hopefully allow for stopping hypos and hypers before they become a problem. Scary because where I thought I had good control (and this is probably the perfectionist in me) I could see where could be room for improvement.

After seeing that that I would usually have large uses after eating we knew instantly that the insulin to carb ratios were off. We adjusted them across the board but in doing that we had to be careful with the basal rates because if there was more insulin in the body for food then the basal rates may be too high. We also noted in the times where there were large gaps between eating the basal rates were on a slight decline so it was decided that we would cut back the basal rates to compensate for the increase of I2C rates.

As stated previously this was a welcome tune up and baseline for my pump settings and to tell you the truth it was a very successful 6 days.

With the auto shut off features and the ability to set your rise and fall rates this would be of great benefit each and every day but with it being out of my reach financially then the tune up is a great way to get everything back into line and maintain the best control ever.

Out of interest for those of you on Medtronic insulin pumps and in Australia they currently have a free 6 day trial offer for the transmitter and sensor. All you need to do is give them a call and mention the 6 day free trial and they will organise it with your health care team and yourself.

"Death by Numbers" a game of awarness

At work I have a type 2 diabetic and myself a T1 and as I have been writing this blog I have been trying to educate as best as I can what T1D is and what there is to expect. One thing that I was unsure of was working out how to get people in my direct team to recognize if there is a problem. When I say problem if I was having a Hypo of Hyper. Even the most aware and well controlled diabetic can have a hypo sneak up and attack without warning. So with all of this in mind I set out trying to work out the best way of getting people to look for the signs.




I came up with a game called "Death by Numbers" the reason for the name has a number of purposes.




1. In my work we deal a lot with numbers so asking the team to look or consider more could mean death.




2. For people to understand when  Hypo is raging then their awareness could mean less risk of death (I know a little dramatic but sometimes dramatic helps make a point)




Now for the game itself. It is simple really I send an email with a basic blurb as to what a normal BSL is and what range you could expect from a T1 and T2 diabetic. Each person then has the ability to ask questions as to what a previous test was, what food had been consumed and when we last ate, and any other question (other than what is your BSL?) that they feel they can use to make an estimate on what the current BSL is.




Once the questions have been asked they reply to the email with their guess as to what the BSL is.


After all entries are in then the test is done. The person with the closest guess is the winner of a prize of exponential value....... a choice of a mini chocolate bar ;-).




Since beginning this game the awareness across the team has grown exponentially. The guesses are getting closer and closer and the questions are getting more and more refined.




On a selfish note to do something like this helps me to feel that if something goes wrong and help is needed then there is a team of people that can not only help but also recognize when things are not right.




Find a way to educate and make it fun... It is amazing to see the reaction from people who previously had no concept of what is required to manage this disease to now be people who understand and can make a difference.




Education is the key!

Being Alone with T1D

It is easy to say that T1D can be a large part of your life but when it comes down to it we are all just trying to have the best life possible. One of the areas that has always put weight on my mind is being alone and dealing with T1D. Having the fear that a serious hypo will attack at night and cause you either to wake up in a diminished state or not wake up at all is something that each and every T1D has to come to terms with at one stage or another.

I have been told and have read about services that will call your phone number at a set time every morning and if you answer then the service is met but if they have 2 failed attempts then they call a set second number of a family member of friend. If they answer then they have the opportunity to check that your ok. If the family member or friend doesn't answer then the ambulance is called to ensure you are checked and ok.

I have been through multiple stages with in my 24 years with T1 where I have been absolutely terrified of being alone and not trusting that I could manage it all myself in every situation, one of these instances I found myself trying to convince my parents to allow my younger brother to move out of home to rent with me. I must have been in a state cause through the stress and worry while trying to convince them a hypo hit like on cue and caused me to need help to get it rectified quickly. After that conversation and a few hypo tears it must have made a clear picture of my need as it was decided that I get my house mate.

Then there are times like now where being alone is not a worry. I have confidence that my control is good and that if an unexpected hypo was to occur (even in the middle of the night) then I have the strength to get up and get everything back on track. That I have the ability for my body to still produce enough adrenaline to ensure the mind stays active enough to react.

I wouldn't do anything stupid like drink heavily or do an excessive amount of 'out of the norm' exercise when I know I am alone but I would still live life. As with everything else in this T1D life it is about balance and confidence.

Balance, to understand that everything has some sort of effect and you need to monitor you BSL and balance the nutritional intake.

Confidence, to have faith that the work that you put in each and every day will be enough to get you through on auto pilot if needed. Confidence that plans, if needed, are in place to ensure all is well and confidence that we manage our lives with T1D and it isn't T1D taking us on a ride.

Even though we sometimes feel alone in this life with T1D actually being alone adds another complexity and heart ache to the situation. It is never easy but it is manageable.

You learn something new each and every day. Even if you don't realise.

I start this entry with the words of caution "I am not a specialist or doctor but I am the expert on my own T1D."

After now 4 months with 2 T1D's in the house I have been amazed to see just how the honeymoon period works compared to someone who has no natural insulin production. If you have read my other entries you will know that the first decision my wife and I made when our 2 year old daughter was diagnosed was to get her onto a pump ASAP. This meant getting up and running before we left the hospital. As I was already a Medtronic user we went forth with what was familiar. We made the decision because of the following reasons -

1. Our daughter is fussy. There is no way we could ensure she would eat a set amount of carbohydrates at any given time.
2. After living with MDI and a pump we wanted our daughter to have the best possible start with the best control.
3. To also put it straight we wanted to only give an injection to a 2 year old every 2 days rather than 5 times a day.

If these were the only benefits that bringing this device into our daughters life then we were going to be extremely happy. We would soon see that these benefits were not the only ones.

With the honeymoon period in full swing my daughters pancreas is in the process of slowly diminishing it's insulin production. Coming out of hospital we were under the belief that the insulin levels were keeping her at a stable level. This was true for the first 2 days after those days I found myself lowering the insulin levels across the board. Each time I made these adjustments the changes would work however they would only work for a number of days before the hypos would start again. I would go through the same process and wait for a pattern to form before making the required change.

The benefit that we were not aware of is that while our daughters beta cells are slowly being attacked we are able to artificially replace the function of the pancreas and the insulin production. While not replacing we are helping to support the pancreas while it is under attack. Instead of allowing it to be under stress and for it to diminish quickly we were now using the pump to prop it up.

I realised that each time we had to review the setting on the pump and reduce the insulin amount was the ability to reprogram the pancreas. Why is that important? Well to be able to maintain natural insulin production is the ability to allow the body to have natural, stress free production and the best chance of long term benefit. this disease is not easy and as you progress further down the road you realise how important good control and stability is in the early days of T1D.

We also realise that this honeymoon period will finish one day soon however the ability to maintain natural function is now one of the biggest benefits to having the insulin pump introduced even at an age where they have no idea what is going on and why they have to carry around this life and lifestyle saving device.

This is my learning for the day and I didn't even know it was coming.