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.

The difference between being and looking after a T1D

It has been a while since I have posted and to tell you the truth it is because T1D has taken a backseat to MS in my life. Being someone who wants to know all about the disease that it attacking my body it takes precedence. However I thought I would jump back into the drivers seat as I was thinking to myself the other day there are differences in managing your own compared to managing someone else's T1D.

The feelings that you have on a day to day basis, the intuition that your body throws you and the ability to know what is coming are just some of the things that make actually living with the disease manageable. Having a 2 year old T1D I keep reminding myself that all of these things and feelings would feel normal at this stage. She wouldn't know that a sudden drain of energy, shakiness, faintness and all the other signs are part of a hypo all she knows is that mum and dad try not to freak out while draining blood from one of her delicate fingers and then once we read the low reading we run around the house and tell her she has to eat something sweet. On the other end of the see saw she also doesn't realise, as she did the other day, that if someone gives her a big bag of lollies like her sisters then she can't just gorge into them because the feelings of sickness, tiredness, thirst and the urgent need to go to the bathroom are not a normal part of "normal" life.

For me I know that if I step out side of the routine and disregard the rules of T1D then I have myself to blame for it. I know that the symptoms of either a high or low will teach me that I really shouldn't have ignored what works and what is good for me. But if I or my wife disregard the rules when it comes to our daughter then it is she that suffers, yes we suffer the pain that any parent will go through when they see their child sick, but she is the one that truly suffers in and out. It frustrates me that even I know the feelings that I have in these circumstances I can't yet get my daughter to understand that the feelings she is having are not normal and are feelings that need action and understanding.

Another interesting fact about knowing and having a history of T1D is that we continue to realise that  by knowing the signs of our daughter early and getting her onto a stable regime on the pump we have been able to reinvigorate her pancreas for a longer period of time. This means more natural function and less strain on little organs that are developing at a rapid rate. The "honeymoon period" is frustrating because every day can be different because the ability to know when the pancreas is working and when it isn't is impossible however we know our daughter will that us in the years to come as we are giving her the best start possible.

Living with T1D compared to managing someone else's is challenging. Being able to take notice of signs or changes that seem out of the norm are a day to day, minute to minute , second to second job that left unnoticed just for a minute could mean the difference of a mild hypo and a major one.

My levels are set to a point that I know with little worry, unless something strange has happened like a kinked line or a bad batch of insulin, that I can sleep comfortably through out the night or if I need to miss a meal then I can sit at a comfortable level. It will take time to get there with my daughter but for now and for the foreseeable future we need to test through out the night to make sure she is safe. A matter of hours could mean the difference of a perfect number or a high or low. This sees us have to give 2 hourly blood tests until a time that a clear pattern of stability is formed. With the pancreas still active this will be no time soon.

  I look forward to the day where I can teach my daughter what I know so that she will be able to understand what her body is doing at any one time. Even though she will grow up and manage her own T1D we will always be in it together and my wife and I will always worry and be proud of her efforts.

A happy interaction....

It is amazing as I contribute to online communities, talk to other parents with children with T1D and even have friends with T1 (even though we don't talk enough) but nothing stands up to speaking to a complete stranger who you connect to instantly because we share this disease.

Today while waiting for my wife to have her nails done I decided to take the kids to the park at the shopping centre. I open the door and the kids run, as usual, to all the fun and excitement that the park brings. Keeping in mind that I needed to make sure that my T1 daughter didn't drop low I decided to take a seat and watch the fun. Upon sitting down I saw a common sight to me but to most people would not even take a second except if they were looking to see if the device that was on the pocket was some sort of pager or MP3 player.

I knew instantly that this person knew what it was like to have a hypo or to be high, from over doing the sugar intake and not weed. It isn't everyday you come across another T1 so I decided to make contact. For a split second the Type ones in the near vicinity out numbered the normal people (well it didn't but there were now 3 out of around 10 and in my opinion that is almost a gathering) and I said  the mother playing with her family that I think there are now more type 1's here than normal people. Instantly when hearing those words there was understanding that we were both on the same page.

After conversing for minutes about myself and my daughter being T1 and jotting though the standard questions such as "When were you diagnosed or How long have you been Type 1?" I realised to myself that to speak face to face with someone who goes through a day simular to what I do is a relief and a joy. To be able to speak only half of a scenario and know that the other person can relate is something to behold. Usually if I told someone that I was 2.2 it would mean absolutely nothing to them without a long explanation as to the standard levels and what causes low blood sugar is and even what blood sugar is but in this instance I was told and I could empathise without even another word.

I suppose that this relates back the scenario where people talk about the advancement of technology across all sectors such as robots working in hospitality (I know a long way off) and less need for people as we are automating so much that where we used to have 10 people to do a job we now only require 2, where doctors will consult online with instruments that will send instant results online. There is a time where human interaction becomes one of the most important factors in life. To be able to relate feelings, scenario's, joys and frustrations is as important to me as breathing. Nothing can ever take away from this event and for any T1's out there that don't have the want or maybe the means to meet another T1 in person then I hope one day that you have the opportunity as nothing compares.